I have a HUGE migraine right now, hopefully I am getting my period which I missed this month. I am hoping I do because I am SO bloated and started my diet. It would really help my confidence if I just dropped the water weight I am holding onto. I was 126 lbs when I started chemo and I am 149 lbs now (as of Saturday). Thats a 23 lbs weight gain people! I never thought I would post this here but I plan on losing it and returning to my old weight since I worked so hard to do so before the sh*t hit the fan. I just weighed myself and I lost 1/2 lb and weigh 148.5 lbs. I am shrinking by the minute!
I mailed my wig back so they can sew the little combs into it. The adhesive was pulling out my growing hairs and I cant have that. I mailed it USPS Priority and insured it for $2000. If it gets lost I can use that money to pay for it because I used my CC. I would miss it but we really need the money. Its sad because I love that wig and I still plan on wearing it when the holidays come.
Well, since we are so broke I thought that I would make a few people their Christmas gifts this year. Thats the main reason I bought so much yarn when I went to the craft store the other day. I bought lots of stuff and still need size 7 needles to make the dishtowels for the kitchen. I am making a few for me and for my Grandmother who also mentioned some interest in crocheting again. I told her I have some yarn and an extra H hook that she can have to play around with. She sounded excited about it which is strange behavior for her. She is usually grumpy but hey if it makes her feel better. I am going to Knotty Girl later and am also asking about a lesson so I can really learn how to increase, decrease and all the stuff I am having a problem with. I plan on making my Dad a nice thick bulky scarf, he loves them. I am also going to make one for my Aunt, Mom, cousins and whoever I think is in need of a scarf! Some will be for outerwear and others will be for wear with a pretty sweater. I plan on making more than scarfs though. I am still learning so give me some time. I am definitely addicted because its all I can think about is making all these pretty things! From one obsession to another I say but its all good.
Last night while I was bathing my daughter I smelled gas. The kids bathroom is on the other side of the house and my husband and son were watching a video in our bedroom and he wasnt able to smell it. The furnace and hot water heater in down stairs and on the side of the house my daughter and I were in so I assumed thats where it was coming from and it was STRONG. I called for my husband and he immediately told me and the kids to GET OUT NOW were his exact words as he threw me the phone and my wallet. On the way out the door I opened as many windows as I could and called the police. Within 3 minutes I heard the fire engines. My kids were in their pajamas and we headed out the door and across the street to our neighbor J's house. He's such a great guy and his wife and kids were out there to helping me with my son and daughter because they were frightened. Hey, so was I. I had managed to get all the animals inside the HUGE crate I have. Three dogs and two cats sharing the space together. They were all good and they knew why. Animals are so smart. I pulled the crate over to the two open French doors which leads out to our deck and I figured they would be fine. If the fire men said to remove them I would have loaded them all in my car but my kids were with me and I couldnt get them physically out by myself. Plus they were on the other side of the house were you couldnt smell gas. While we were standing in J's driveway I heard the sound of sirens. Then I see not one, not 2, not 3, not 4, but 5 fire trucks make the turn onto my street! Wow, they dont fool around I guess. J said that they dont fool around with gas because they had a couple of houses explode. Thats a nice thought. When they were inspecting the house I went over to talk to one of the firemen. He was the nicest guy you would ever want to meet. He was also HOT!! Probably MUCH younger than I too. He kept asking me questions about my kids and mentioned that his son went to the same program as mine and so on. I havent been hit on in a while and thats what was happening. I looked HORRIBLE and had pizza sauce on my white shorts and a Buff that didnt match on my head. My eyebrows which consist of brown powdered eyeliner, were practically off my face. This guy must dig chemo chicks or bald ones! It was very funny. He made sure to check EVERYTHING so I could sleep that night. Eventually they found what they thought was the problem and I agreed. At the time I smelled the gas I was bathing my daughter and using the hot water. Our hot water heater is gas and over 20 years old. It was installed in 1984. My husband put the attic fan on with all the windows shut which created a negative pressure situation in the house blowing out the pilot light on the hot water heater. Therefore the gas smell and I mean smell. We opened everything and it still registered on the firemens gas detectors thats how strong it was. So they cant say for sure but I bet thats what it was. They couldnt detect any leak elsewhere so logical reasoning would say thats what it was. I have to call the gas company and have them come out to service the hot water heater. We really need a new one because the new ones have saftey features that the old ones are lacking but they cost a pretty penny as does everything else. Add something else to the list. We did find all the cat toys when the firemen moved the stove out from the wall to check the gas line. The cats were high on cat nip the rest of the night and you should have seen my old man stoned. He was wobbling all over the place. (I realized that previous sentence doesnt sound right if you havent read the entire paragraph).
My husband is quite handy and I guess things happen in threes. Last week our ceiling fan just stopped working in our bedroom. It was 20 years old also so the motor burned out from it being on day and night. With the heat we have been having I keep it on with the AC to move the air. We went to Home Depot and got a Hampton Bay for $60. It was a great deal because the one I really wanted was way to much and unaffordable at $269. Thats crazy and way over any budget so we got the cheaper one and I love it because it works! Then our Master Bedroom toilet started to leak from the base. DH had the entire thing taken apart with a gapping hole in the ground on Monday morning when I woke up. It took him 4 hours but he fixed it. It cost $28 in parts and a plumber would have charged at least $400 for the work with labor and parts. DH also fixed the pipes that came from the sink in the bath because they broke while he was fixing the toilet. Now this gas leak thing with the hot water heater happens. Anything else that can break?
I watched the couple that bought our other house move in the other day. I couldnt get a look at them close but one drives a mini Cooper. They already have lounge chairs on the front deck and flowers. I hope they find as much happiness there as we did. I am so happy a contractor didnt buy it and knock it down, it would have broken my heart to see such a cute little colonial with so much history being knocked down for a 5,000 SF McMansion to be put in its place. I cant stand those huge houses.
Tomorrow I have an appointment with my oncologist. The appointment is with the nurses and not the Dr. I am only having my port-a-cath flushed. This will be for the last time before my surgery and then its gone! I cant wait for it to come out but I am not looking forward to my surgery. I am nervous, anxious and frightened as the days inch closer and closer. I also notice that I am losing patience with little things and snapping at everyone. I think this is the reason.
I wish this damn headache would go away so I can knit and relax. It so relaxing to me when I am doing it thats one of the reasons I am doing it. Its more productive than watching TV or doing puzzles but that doesnt mean I am giving those things up either, fat chance.
Wednesday, July 26, 2006
Saturday, July 15, 2006
2 Week Post Chemo Update
July 12, 2006, I had an appointment with my oncologist for my 2 week post chemo check. They took lots of blood and then I waited to see him. He said everything was fine and I looked great (he doesnt see me in the morning!). He told me to see a GI specialist for my stomach problem (which I thought he would say). I also requested a MRI of my head and he said he would do it after my surgery was complete. I have to have my port flushed in 2 weeks and then I dont have to see him for 3 months. That would be in October sometime. He'll probably order a PET scan along with the MRI to see if I am cancer free. I spoke to the GI Dr when I got home and he wants me to wait to see if it will heal (he thinks its an ulcer/erosion) on its own and would rather wait to do an endoscopy because he would be treating me the same as he is now. So we will wait and I'll buy stock in Gaviscon!
After the oncologist I went across the street to the hospital to see my OT. She FINALLY got the sleeve in!! BUT not the glove, which I need more than the sleeve because my hand is always swollen. I havent been able to wear my wedding band in months and it bothers me. Right now I should be wearing my sleeve but it makes my hand swell more if I dont wear it with the glove. So now we go back to waiting for the glove! What a joke. Lets hope I have everything before my surgery. I dont have to see the OT until she gets the glove in so I am awaiting the phone call from her on that. I am typing on my home computer, not my laptop and its so uncomfortable! I am so spoiled with my iBook.
My husband and I had our 3rd appointment with the therapist this morning while the kids were at camp. It was a much better session than the previous two and I didnt get upset. Things are looking up lately. I hope they continue to improve. I still find myself doing most of the talking and I wish my husband would talk more. I said that to the therapist in front of him and he thinks that he is talking alot and getting his emotions out. Its funny how men look at things differently than women.
When we got home I opened my mail and there was a check from my health insurance company that has to be signed over to the plastic surgeon so I called his office to let them know I had it. The person who picked up just happened to be the billing person/office manager and she said that I owed them more than what the check was made out for. Something like $275 more!!! That was for a consult mind you and they charged the insurance company $400!! Thats crazy, just to talk to a plastic surgeon. She said that he was out of my network and I had a certain percentage to pay. When I was there she never said that to me. Now, all the Dr's I have been seeing are out of my network (who the heck knows why when the insurance is thru my husband's job which is the hospital all these Dr's work out of!!) and they have just been taking what the insurance gives them and eating the rest out of courtesy for my husband who works at the hospital. I have not received a bill from any of the Dr's so far and only have to pay a co-pay with the pain specialist I see. So this office manager (I should call her a bitch but I'll call her B instead), B, tells me to mail the money to her. I said I dont have that money and I wont have it so I cant do a payment plan, thats how broke I am. I just paid my 2 car payments which were both 22 days late! I asked to speak to the Dr and she refused. As soon as I told her that my husband worked at the hospital she should have thought in her tiny brain that MAYBE the surgeon knows him and wants to work something out with the way its going to be handled but NO she didnt. She should have taken my number and had the Dr call me back when he had time, like all my other Dr's do. I was crying so much that I dropped the phone and was sobbing uncontrollably, my husband had to pick it up to talk to her. He explained how all the other DR's were eating the deductables and accepting what the insurance is giving them and there is no way we could pay a percentage of what the plastic surgeons bill was going to be for breast reconstruction. 20% of $20,000 (just a guess its probably much more) is a lot of money we dont have and I refuse to pay anything for because I didnt ask to get breast cancer and I am not electing to have a boob job so my insurance should pay. DH said that there is some state or federal law about that. He told B to find out from the insurance company EXACTLY what they were going to cover and how much it would be and call us back. Apparently she had no clue as to what was going to be covered or not which she should have known, thats her damn job. After he hung up with B he called my breast surgeon (she is a saint) Dr Ward and left a message with the receptionist to have her call because I was very upset over a situation with the plastic surgeon. They work together ALL the time. She called back in 15 minutes and I told her what was happening. She also doesnt take my insurance but she just accepts what the insurance company gives her. She is the definition of a beautiful, caring doctor with a wonderful bedside manner. More Dr's should be like her. She said that B had no right to tell me what the Dr would or would not do because he has worked it out with patients before, as all plastic surgeons do in cases like this, and she would personally call him and speak to him on my behalf. I cant go to another hospital because she is my breast surgeon and she is doing the mastectomy portion of the surgery. He is the only plastic surgeon that does recon at the hospital at this time. The other one that was there had privilages taken away for coming into the hospital drunk or high or something like that. Yeah, I would want him to operate on me! Anyway, Dr Ward told me that these billing people dont care who they upset, they just want to make the office the most money because it makes them look good, so they think. When B was on the phone with hubby and I was sobbing in the backround she said, "I know how difficult this must be." My husband said outright, "NO YOU DONT SO PLEASE DONT SAY YOU DO". You go hubby!!
I am so upset over this entire thing you should see what a mess I was before. I couldnt stop crying and was almost vomiting I was so upset. I am going to try and calm down because Dr Ward is doing all she can to help me.
Last week I came across a website that gives out free hats to people undergoing chemo. I think its www.heavenlyhats.com I told them it was for me and that I like the color pink. Within 5 days I received a big box with 4 hats and 2 bandanas in it! Nice ones too! One was a pink baseball hat the other was one with the pink ribbon on it & 2 were floppy Ralph Lauren hats. One bandana was a bright green with Hawaiian flowers and the other had the breast cancer ribbons on it. It was such a nice thing to do I was so happy. I have to send them a thank you note.
Tomorrow my hubby and I plan to go out after he gets out of work. Hopefully we can get something to eat and go see Pirates of the Carribbean with Johnny Depp. I want to see that movie so bad. It all depends on what time he gets home and if we can get into a place to eat. We will never get into the Japanese Restaurant that we both love because you need a reservation and I dont know when he is going to be home. My sister is actually coming up tomorrow afternoon to hang out and watch the kids after camp. My Mom is going to take over for her in the evening when we go out. They are going to either collapse from exhaustion or get their second wind and make my Mom collapse!
Saturday, DH's nurse manager (who is leaving) is having a going away party at her house. She lives down the block from us. They have a pool and lots of stuff to do so we are going to go for a few hours. The kids are going to love playing in the pool especially since we didnt open our pool this year. Its supposed to be in the 90's so I better find my bathing suit!
*************************************************************************
July 15,2006~The situation with the plastic surgeon has been resolved and the B woman called my DH at work to apologize. To little to late B. Anyway, its one less thing to stress over.
My bloods came back normal. What a relief. The only thing that was off was my TSH and Free T4 so the Dr adjusted my synthroid dosage. Hopefully it will return to more normal numbers in 4 weeks when he wants it checked again.
My husband and I went to see Pirates of the Caribbean last night. It was good but the story doesnt end at the end of the movie. They leave it as a "to be continued" when the third one comes out. It was a lot scarier than the 1st one and definitely not for the kids. Well, kids that are 6 and 3 that is.
We went to the party that my husband's ex-nurse manager had today and ended up staying longer than we had planned. The kids were in the pool most of the time that we were there and both DH and I were in there with them. I had a good time even though I didnt feel to great wearing my bathing suit. I barely made it into it due to the weight I gained during chemo. Most of the people DH works with are nice but there is one particular person that we avoided and I wont mention names here. She is the new Nurse Manager and I waiting for her do screw up because its only a matter of time. Its a long story about her and I dont feel like going through it but believe me she is not a nice person.
My stomach is still bothering me and I stopped taking the Zegerid and started back on the Protonix. I'll see if I notice a difference in how I feel. I dont want to have an endoscopy so anything to avoid it would be nice.
Tomorrow we are going to my Mom's for dinner because she is going away for a few weeks and my Grandmother is going to the shore with my Great Aunt. I am a little nervous because I am going to be doing things for the 1st time without some help and I am expecting to be totally wiped out. I know I can do it though because I did it after I had back surgery 3 years ago. The difference is that my son wasnt as active three years ago!
Time to work on some easy crosswords.
After the oncologist I went across the street to the hospital to see my OT. She FINALLY got the sleeve in!! BUT not the glove, which I need more than the sleeve because my hand is always swollen. I havent been able to wear my wedding band in months and it bothers me. Right now I should be wearing my sleeve but it makes my hand swell more if I dont wear it with the glove. So now we go back to waiting for the glove! What a joke. Lets hope I have everything before my surgery. I dont have to see the OT until she gets the glove in so I am awaiting the phone call from her on that. I am typing on my home computer, not my laptop and its so uncomfortable! I am so spoiled with my iBook.
My husband and I had our 3rd appointment with the therapist this morning while the kids were at camp. It was a much better session than the previous two and I didnt get upset. Things are looking up lately. I hope they continue to improve. I still find myself doing most of the talking and I wish my husband would talk more. I said that to the therapist in front of him and he thinks that he is talking alot and getting his emotions out. Its funny how men look at things differently than women.
When we got home I opened my mail and there was a check from my health insurance company that has to be signed over to the plastic surgeon so I called his office to let them know I had it. The person who picked up just happened to be the billing person/office manager and she said that I owed them more than what the check was made out for. Something like $275 more!!! That was for a consult mind you and they charged the insurance company $400!! Thats crazy, just to talk to a plastic surgeon. She said that he was out of my network and I had a certain percentage to pay. When I was there she never said that to me. Now, all the Dr's I have been seeing are out of my network (who the heck knows why when the insurance is thru my husband's job which is the hospital all these Dr's work out of!!) and they have just been taking what the insurance gives them and eating the rest out of courtesy for my husband who works at the hospital. I have not received a bill from any of the Dr's so far and only have to pay a co-pay with the pain specialist I see. So this office manager (I should call her a bitch but I'll call her B instead), B, tells me to mail the money to her. I said I dont have that money and I wont have it so I cant do a payment plan, thats how broke I am. I just paid my 2 car payments which were both 22 days late! I asked to speak to the Dr and she refused. As soon as I told her that my husband worked at the hospital she should have thought in her tiny brain that MAYBE the surgeon knows him and wants to work something out with the way its going to be handled but NO she didnt. She should have taken my number and had the Dr call me back when he had time, like all my other Dr's do. I was crying so much that I dropped the phone and was sobbing uncontrollably, my husband had to pick it up to talk to her. He explained how all the other DR's were eating the deductables and accepting what the insurance is giving them and there is no way we could pay a percentage of what the plastic surgeons bill was going to be for breast reconstruction. 20% of $20,000 (just a guess its probably much more) is a lot of money we dont have and I refuse to pay anything for because I didnt ask to get breast cancer and I am not electing to have a boob job so my insurance should pay. DH said that there is some state or federal law about that. He told B to find out from the insurance company EXACTLY what they were going to cover and how much it would be and call us back. Apparently she had no clue as to what was going to be covered or not which she should have known, thats her damn job. After he hung up with B he called my breast surgeon (she is a saint) Dr Ward and left a message with the receptionist to have her call because I was very upset over a situation with the plastic surgeon. They work together ALL the time. She called back in 15 minutes and I told her what was happening. She also doesnt take my insurance but she just accepts what the insurance company gives her. She is the definition of a beautiful, caring doctor with a wonderful bedside manner. More Dr's should be like her. She said that B had no right to tell me what the Dr would or would not do because he has worked it out with patients before, as all plastic surgeons do in cases like this, and she would personally call him and speak to him on my behalf. I cant go to another hospital because she is my breast surgeon and she is doing the mastectomy portion of the surgery. He is the only plastic surgeon that does recon at the hospital at this time. The other one that was there had privilages taken away for coming into the hospital drunk or high or something like that. Yeah, I would want him to operate on me! Anyway, Dr Ward told me that these billing people dont care who they upset, they just want to make the office the most money because it makes them look good, so they think. When B was on the phone with hubby and I was sobbing in the backround she said, "I know how difficult this must be." My husband said outright, "NO YOU DONT SO PLEASE DONT SAY YOU DO". You go hubby!!
I am so upset over this entire thing you should see what a mess I was before. I couldnt stop crying and was almost vomiting I was so upset. I am going to try and calm down because Dr Ward is doing all she can to help me.
Last week I came across a website that gives out free hats to people undergoing chemo. I think its www.heavenlyhats.com I told them it was for me and that I like the color pink. Within 5 days I received a big box with 4 hats and 2 bandanas in it! Nice ones too! One was a pink baseball hat the other was one with the pink ribbon on it & 2 were floppy Ralph Lauren hats. One bandana was a bright green with Hawaiian flowers and the other had the breast cancer ribbons on it. It was such a nice thing to do I was so happy. I have to send them a thank you note.
Tomorrow my hubby and I plan to go out after he gets out of work. Hopefully we can get something to eat and go see Pirates of the Carribbean with Johnny Depp. I want to see that movie so bad. It all depends on what time he gets home and if we can get into a place to eat. We will never get into the Japanese Restaurant that we both love because you need a reservation and I dont know when he is going to be home. My sister is actually coming up tomorrow afternoon to hang out and watch the kids after camp. My Mom is going to take over for her in the evening when we go out. They are going to either collapse from exhaustion or get their second wind and make my Mom collapse!
Saturday, DH's nurse manager (who is leaving) is having a going away party at her house. She lives down the block from us. They have a pool and lots of stuff to do so we are going to go for a few hours. The kids are going to love playing in the pool especially since we didnt open our pool this year. Its supposed to be in the 90's so I better find my bathing suit!
*************************************************************************
July 15,2006~The situation with the plastic surgeon has been resolved and the B woman called my DH at work to apologize. To little to late B. Anyway, its one less thing to stress over.
My bloods came back normal. What a relief. The only thing that was off was my TSH and Free T4 so the Dr adjusted my synthroid dosage. Hopefully it will return to more normal numbers in 4 weeks when he wants it checked again.
My husband and I went to see Pirates of the Caribbean last night. It was good but the story doesnt end at the end of the movie. They leave it as a "to be continued" when the third one comes out. It was a lot scarier than the 1st one and definitely not for the kids. Well, kids that are 6 and 3 that is.
We went to the party that my husband's ex-nurse manager had today and ended up staying longer than we had planned. The kids were in the pool most of the time that we were there and both DH and I were in there with them. I had a good time even though I didnt feel to great wearing my bathing suit. I barely made it into it due to the weight I gained during chemo. Most of the people DH works with are nice but there is one particular person that we avoided and I wont mention names here. She is the new Nurse Manager and I waiting for her do screw up because its only a matter of time. Its a long story about her and I dont feel like going through it but believe me she is not a nice person.
My stomach is still bothering me and I stopped taking the Zegerid and started back on the Protonix. I'll see if I notice a difference in how I feel. I dont want to have an endoscopy so anything to avoid it would be nice.
Tomorrow we are going to my Mom's for dinner because she is going away for a few weeks and my Grandmother is going to the shore with my Great Aunt. I am a little nervous because I am going to be doing things for the 1st time without some help and I am expecting to be totally wiped out. I know I can do it though because I did it after I had back surgery 3 years ago. The difference is that my son wasnt as active three years ago!
Time to work on some easy crosswords.
Thursday, July 06, 2006
Fuzzy Wuzzy was a Bear?
Houston, we have FUZZ! My head has a 5 O'clock shadow and I can see my hair line for the 1st time since March. I am excited over this! I am beginning to use my Morrocco Method Products to help get the growth going a bit faster. If it does what it should and works I'll buy more. I am going to use up what I have first and see what happens because it is expensive.
I am still not feeling well from last weeks Taxotere infusion and my left eye is still twitching. Hopefully it will calm down and stop driving me crazy. My stomach is also acting weird. I need to write all this stuff down so when I see the oncologist next week I can tell him.
Tomorrow my husband and I have our 2nd counciling session with the therapist. I dont want to cry as much as I did the last time we went but I have a feeling I will.
I am still not feeling well from last weeks Taxotere infusion and my left eye is still twitching. Hopefully it will calm down and stop driving me crazy. My stomach is also acting weird. I need to write all this stuff down so when I see the oncologist next week I can tell him.
Tomorrow my husband and I have our 2nd counciling session with the therapist. I dont want to cry as much as I did the last time we went but I have a feeling I will.
Saturday, July 01, 2006
My 8th and LAST Chemotherapy Treatment~6/29/06
I had my last treatment on Thursday morning and we were all running a bit late. My husband and I stopped to get the office staff pastries and the girl at the bakery was the nastiest b*tch walking the face of the earth. The bakery is great but dealing with nastiness like that is not worth it. She acted like we were bothering her giving the place business. Last time I checked thats what pays your check jerk.
After that encounter we headed to the office and the lab 1st for bloods to make sure all was well with receiving the treatment. My hematocrit was low and they wanted to give me Procrit but I have gone this far without is so I said that I would rather skip it if it was OK with the Dr. It was OK with him, thats probably why I am so darn tired right now. Right before the treatment the Dr wanted to see me in the exam room to get a look at the rash and give his verdict on it. He asked all kinds of questions and finally came to the conclusion that I had a form of what my son had, the Coxackie virus. Adults can get it but not necessarily in the same form that the child would get it. Its healing slowly with the cream I am using so he said to continue using it. We agreed that we would stick with Taxotere as the last treatment because we all agreed that the viral rash was just brought about because of my low blood counts and immunosupressed status and not a result of the drug.
I assumed the usual position in my lucky chair and they gave me all my pre-meds while hubby went out to get some lunch before I fell asleep. We ate lunch and then I started to get a pain in my chest. I wasnt sure if it was gas or a reaction from the Taxotere. They stopped the infusion for a few minutes and gave me some TUMS for my stomach then turned it on really slow. I wanted to get it finished no matter how long it took. I fell asleep the last hour or so that it took to infuse and I was soooo tired afterwards I cant even describe. I was unsure if I was going to make it to the appointment with the pain specialist afterwards.
We left the office at 2pm for the appointment with the pain specialist across the street. There was a ton of people in the office and NO WAY I was going to be able to wait around to see this guy. I waited 15 minutes and realized that the people waiting were already waiting over 45 minutes! I told his nurse practitioner that I had to reschedule another day because I just had chemo and needed to get to bed ASAP. She understood and didnt realize why I was an hour and a half late. I told her they had to slow down my infusion due to chest pain and then she got it. Duh, I thought I told her that I was coming straight over from receiving a treatment when I made the appointment. Well, anyway I can wait, I have enough pain medicine.
When I got home I went straight to bed and didnt move from 3pm-8pm that night. I woke up to shower and get back in bed then awoke again at 2am and had a snack of some cookies and milk to settle my stomach and get back to bed. I have been so exhausted after this treatment that I was teasing that they gave me the old stuff from when I 1st started my chemo treatments!
Yesterday I didnt even want to get up to go for my OT at the hospital but I had to because the Taxotere makes me swell quite a bit. Anything to avoid making the lymphedema worse is better than not doing anything at all so I went. When we got home I hopped into bed again exhaused from doing nothing. I fell asleep again until 7pm and my husband had made the kids dinner again, just like the previous night. You know when I dont prepare dinner then I dont feel well at all. I woke up just long enough to help bathe the kids and sit and watch a video with them. After they went to bed I had some ice cream (my dinner) and watermelon, take a shower and get back in bed. I fell asleep until 1-2am and then couldnt get back to sleep until after 3am. I was hurting quite a bit and got up several times to take pain meds but nothing was working. Finally something kicked in and I fell asleep close to 4am and woke up when the kids did. I had a very hard time getting out of bed and my husband had gone to work so I had no choice but to get up. My Mom wasnt coming until after 10:30am and the kids werent waiting. I had to lay down a few times in between getting the kids breakfast and stuff. The poor dogs had to hold it to wait for me to get enough energy up to get outside and walk them. I am so glad that this is the last treatment because I cant do this anymore. I feel like crap after this and I want it to go away as soon as possible. I feel totally useless to everyone and its not a good feeling. My son starts camp on Monday and I have to get him up early to catch the bus. I know he can handle it but I am not sure I can. At least my daughter doesnt start camp until the following week and an hour later then my son does.
I am sorry I didnt have a chance to update until today. I know a lot of people were wondering how I was doing and waiting for me to write. I could be better but hopefully as the days go by and this stuff gets out of my system I will feel much better. I took some pictures at the office while I was hooked up getting my treatment but I am not sure when I am going to be able to post them.
After that encounter we headed to the office and the lab 1st for bloods to make sure all was well with receiving the treatment. My hematocrit was low and they wanted to give me Procrit but I have gone this far without is so I said that I would rather skip it if it was OK with the Dr. It was OK with him, thats probably why I am so darn tired right now. Right before the treatment the Dr wanted to see me in the exam room to get a look at the rash and give his verdict on it. He asked all kinds of questions and finally came to the conclusion that I had a form of what my son had, the Coxackie virus. Adults can get it but not necessarily in the same form that the child would get it. Its healing slowly with the cream I am using so he said to continue using it. We agreed that we would stick with Taxotere as the last treatment because we all agreed that the viral rash was just brought about because of my low blood counts and immunosupressed status and not a result of the drug.
I assumed the usual position in my lucky chair and they gave me all my pre-meds while hubby went out to get some lunch before I fell asleep. We ate lunch and then I started to get a pain in my chest. I wasnt sure if it was gas or a reaction from the Taxotere. They stopped the infusion for a few minutes and gave me some TUMS for my stomach then turned it on really slow. I wanted to get it finished no matter how long it took. I fell asleep the last hour or so that it took to infuse and I was soooo tired afterwards I cant even describe. I was unsure if I was going to make it to the appointment with the pain specialist afterwards.
We left the office at 2pm for the appointment with the pain specialist across the street. There was a ton of people in the office and NO WAY I was going to be able to wait around to see this guy. I waited 15 minutes and realized that the people waiting were already waiting over 45 minutes! I told his nurse practitioner that I had to reschedule another day because I just had chemo and needed to get to bed ASAP. She understood and didnt realize why I was an hour and a half late. I told her they had to slow down my infusion due to chest pain and then she got it. Duh, I thought I told her that I was coming straight over from receiving a treatment when I made the appointment. Well, anyway I can wait, I have enough pain medicine.
When I got home I went straight to bed and didnt move from 3pm-8pm that night. I woke up to shower and get back in bed then awoke again at 2am and had a snack of some cookies and milk to settle my stomach and get back to bed. I have been so exhausted after this treatment that I was teasing that they gave me the old stuff from when I 1st started my chemo treatments!
Yesterday I didnt even want to get up to go for my OT at the hospital but I had to because the Taxotere makes me swell quite a bit. Anything to avoid making the lymphedema worse is better than not doing anything at all so I went. When we got home I hopped into bed again exhaused from doing nothing. I fell asleep again until 7pm and my husband had made the kids dinner again, just like the previous night. You know when I dont prepare dinner then I dont feel well at all. I woke up just long enough to help bathe the kids and sit and watch a video with them. After they went to bed I had some ice cream (my dinner) and watermelon, take a shower and get back in bed. I fell asleep until 1-2am and then couldnt get back to sleep until after 3am. I was hurting quite a bit and got up several times to take pain meds but nothing was working. Finally something kicked in and I fell asleep close to 4am and woke up when the kids did. I had a very hard time getting out of bed and my husband had gone to work so I had no choice but to get up. My Mom wasnt coming until after 10:30am and the kids werent waiting. I had to lay down a few times in between getting the kids breakfast and stuff. The poor dogs had to hold it to wait for me to get enough energy up to get outside and walk them. I am so glad that this is the last treatment because I cant do this anymore. I feel like crap after this and I want it to go away as soon as possible. I feel totally useless to everyone and its not a good feeling. My son starts camp on Monday and I have to get him up early to catch the bus. I know he can handle it but I am not sure I can. At least my daughter doesnt start camp until the following week and an hour later then my son does.
I am sorry I didnt have a chance to update until today. I know a lot of people were wondering how I was doing and waiting for me to write. I could be better but hopefully as the days go by and this stuff gets out of my system I will feel much better. I took some pictures at the office while I was hooked up getting my treatment but I am not sure when I am going to be able to post them.
Plastic Surgeon Appointment
JUNE 28th, 2006~Today was my appointment with the plastic surgeon and DH went with me. I left the kids with my Mom because I figured the conversation and topic would not be appropriate and also because we would probably not get a chance to talk with a 6 and 3 year old present.
I liked the Dr a lot and I have heard great things about him. I feel comfortable with him and thats whats important. He filled me in on what is going to happen in the OR after the mastectomy takes place and what he is going to be doing. If this is TMI for everyone you can skip ahead, I understand.
After they remove the breast tissue (they try to spare as much skin as possible but they have to take the nipple because its breast tissue where recurrance of the cancer can take place), they then place "expanders" under the pectoralis muscle and skin. They are using a special tissue called Aloderm to aid in forming the shape of the new breast without pulling in another muscle (cant remember the name). If they do it without this material there is more discomfort involved and the breast doesnt look as good/natural as it can look. The Dr explained that many people get grossed out about this stuff because its harvested from cadavers BUT the cells are washed, sterilized and go through a process where the DNA and other stuff is removed or something like that and this 'tissue' actually becomes part of my own body because my cells grow into it like a mesh. Then they place drains into you for a week or two to drain extra fluid that accumulates. I had one drain after my lumpectomy and this time I will have at least 2, hopefully no more than that. They are also going to be removing my port-o-cath during this surgery which I am thrilled over and wish I can get it out tomorrow after my last treatment. After a 3-4 day stay in the hospital they allow you to heal for 2-4 weeks and then begin to inject saline into the expander to stretch the muscle and skin slowly so there is the least amount of pain involved. They usually inject about 50-100cc of saline at once and this is done once a week to once every 2 weeks depending upon how well your body adjusts to the expanding. After you reach the size you are comfortable with (this can take anywhere from a few months to many months) they let you remain with the expanders in for a few more months to make sure the tissue is stretched enough for the next procedure. The next procedure is called an 'exchange' or 'swap' surgery that is done as an outpatient. They remove the expanders and replace them with the implants. I am almost 100% decided on gel implants otherwise known as silicone. The Dr went over all the studies done and that they are just as safe as saline and actually he recommends them for women with mastectomies because they feel and look more natural than the saline implants. Women who have implants for cosmetic reasons still have breast tissue that the implant is behind so there is no issue with how natural it looks. With a woman with a mastectomy there is nothing there but some muscle the implant is under and the skin on top. I did my own research and I was in total agreement with all that he said to me and so was DH which means a lot when he agrees also. The last procedure is done anytime after you are healed from the exchange surgery. It can occur 2-3 weeks after or anytime after. I have heard of women waiting up to a year to do the last procedure. This final procedure involves making the nipple part of the breast. They take tissue that is darker in color usually from the inner thigh area or other private areas (I'm not to sure of exactly where) and use that to form the nipple. After that is formed they do tatooing of the area to make it appear more realistic. I was undecided whether or not I wanted to do this but after seeing the Dr today I think if I have come this far then it makes sense for me to complete the job and have nice looking breasts even though they arent the ones I was born with.
When it comes down to it I would take my 35 year old saggy breasts over implants any day but I am happy that I will have breasts to wear clothing and not feel uncomfortable if I wanted tro wear something a bit revealing. Heck, I might be able to wear things I never was able to wear before! I gotta look at the bright side of things here otherwise I would be crying my eyes out at the loss of my boobies. The breast surgeon said something to me a few weeks ago when I went to see her to discuss the surgery. After I was crying my eyes out in her office explaining that I have an emotional attatchment to my breasts because I nursed both my children for 2+ years each and when I think about them as infants I think about the times I sat in my rocking chair nursing them. She said to me that at that time in my life my breasts were my friends and they fed my babies and made them grow into happy healthy children but now they are the enemy and not my friend. They need to be dealt with appropriately so I never have to go through this hell again. Since she said this to me I have been thinking like that but let me tell you how hard it is. They are a part of me being a woman and I am a bit attatched so I am working on changing my mindset. I have 6 weeks to do that. Surgery is scheduled for the middle of August so I am working on viewing my breasts as the enemy and losing a few pounds so I can go into this surgery a bit healthier. I gained so much weight with all the steroids I have taken during chemo that I have blown up quite a bit. I know that I will lose it because I already did it once and I am more determined than ever. I am waiting for my NutriSystem to arrive and I am starting my diet after the 4th of July.
I thought the day would never come and it seemed so far away when I began my treatment in March. Tomorrow is the day of my last chemotherapy treatment. I am not sure if I am excited about it or not. I feel kind of indifferent about it because I feel like I should be doing something else to help myself. Unfortunately since my tumors were whats called Triple Negative (it means that the tumor is estrogen, progesterone and Her2 receptor NEGATIVE and cannot be treated with tamoxifen, arimidex or herceptin because it wont respond to them). Being triple negative has its good and bad things about it. The bad is that if you are triple negative you have the highest rate of recurrance within 2.5-5 years. After you have reached the 5 year mark you actually have a lower recurrance risk than the people who are positive for any of those 3 receptors. What many people dont understand about breast cancer is that there is no 5 year rule like other cancers. With most other cancers after 5 years they say you are cancer free or cured (many dont like the use of that word because there is no 'cure' for cancer) but with breast cancer they cant say that because you can have a recurrance 10, 15 or 20 years down the road. When I first read that I was stunned because I didnt know that but I made up my mind not to dwell on statistics and numbers because everyone is different and they cant classify you or throw you into this group or that group of women with BC. Mark Twain once said that there are 3 types of lies: Lies, damned lies and statistics. This is so true because with all the medical problems I have had I was supposed to be in the higher statistical range and not have the disease but I did. Thats why I hate numbers and statistics.
Well, I got to get to sleep because tomorrow is a big day and I have to see the pain specialist AFTER my treatment. I had no choice because he didnt have an appointment available before my treatment. I also have to do something nice for the nurses so I think DH and I are going to get some pastry for them. I want to do more but dont have enough time in the morning plus I have to think about what I want to get them. They were all wonderful and I love every one of them.
A special thanks to my "THREE MUSKETEERS" who came through for me today with a surprise bouquet of flowers in celebration of my last treatment. But more so than the flowers and gifts given to me, they have shown me such support, love and compassion throughout this entire time I've been treated that it cant compare to any material gift. What they have given me cant be bought in any store. I love the three of them with my whole heart and they will be with me tomorrrow as I start another journey in my life.
I liked the Dr a lot and I have heard great things about him. I feel comfortable with him and thats whats important. He filled me in on what is going to happen in the OR after the mastectomy takes place and what he is going to be doing. If this is TMI for everyone you can skip ahead, I understand.
After they remove the breast tissue (they try to spare as much skin as possible but they have to take the nipple because its breast tissue where recurrance of the cancer can take place), they then place "expanders" under the pectoralis muscle and skin. They are using a special tissue called Aloderm to aid in forming the shape of the new breast without pulling in another muscle (cant remember the name). If they do it without this material there is more discomfort involved and the breast doesnt look as good/natural as it can look. The Dr explained that many people get grossed out about this stuff because its harvested from cadavers BUT the cells are washed, sterilized and go through a process where the DNA and other stuff is removed or something like that and this 'tissue' actually becomes part of my own body because my cells grow into it like a mesh. Then they place drains into you for a week or two to drain extra fluid that accumulates. I had one drain after my lumpectomy and this time I will have at least 2, hopefully no more than that. They are also going to be removing my port-o-cath during this surgery which I am thrilled over and wish I can get it out tomorrow after my last treatment. After a 3-4 day stay in the hospital they allow you to heal for 2-4 weeks and then begin to inject saline into the expander to stretch the muscle and skin slowly so there is the least amount of pain involved. They usually inject about 50-100cc of saline at once and this is done once a week to once every 2 weeks depending upon how well your body adjusts to the expanding. After you reach the size you are comfortable with (this can take anywhere from a few months to many months) they let you remain with the expanders in for a few more months to make sure the tissue is stretched enough for the next procedure. The next procedure is called an 'exchange' or 'swap' surgery that is done as an outpatient. They remove the expanders and replace them with the implants. I am almost 100% decided on gel implants otherwise known as silicone. The Dr went over all the studies done and that they are just as safe as saline and actually he recommends them for women with mastectomies because they feel and look more natural than the saline implants. Women who have implants for cosmetic reasons still have breast tissue that the implant is behind so there is no issue with how natural it looks. With a woman with a mastectomy there is nothing there but some muscle the implant is under and the skin on top. I did my own research and I was in total agreement with all that he said to me and so was DH which means a lot when he agrees also. The last procedure is done anytime after you are healed from the exchange surgery. It can occur 2-3 weeks after or anytime after. I have heard of women waiting up to a year to do the last procedure. This final procedure involves making the nipple part of the breast. They take tissue that is darker in color usually from the inner thigh area or other private areas (I'm not to sure of exactly where) and use that to form the nipple. After that is formed they do tatooing of the area to make it appear more realistic. I was undecided whether or not I wanted to do this but after seeing the Dr today I think if I have come this far then it makes sense for me to complete the job and have nice looking breasts even though they arent the ones I was born with.
When it comes down to it I would take my 35 year old saggy breasts over implants any day but I am happy that I will have breasts to wear clothing and not feel uncomfortable if I wanted tro wear something a bit revealing. Heck, I might be able to wear things I never was able to wear before! I gotta look at the bright side of things here otherwise I would be crying my eyes out at the loss of my boobies. The breast surgeon said something to me a few weeks ago when I went to see her to discuss the surgery. After I was crying my eyes out in her office explaining that I have an emotional attatchment to my breasts because I nursed both my children for 2+ years each and when I think about them as infants I think about the times I sat in my rocking chair nursing them. She said to me that at that time in my life my breasts were my friends and they fed my babies and made them grow into happy healthy children but now they are the enemy and not my friend. They need to be dealt with appropriately so I never have to go through this hell again. Since she said this to me I have been thinking like that but let me tell you how hard it is. They are a part of me being a woman and I am a bit attatched so I am working on changing my mindset. I have 6 weeks to do that. Surgery is scheduled for the middle of August so I am working on viewing my breasts as the enemy and losing a few pounds so I can go into this surgery a bit healthier. I gained so much weight with all the steroids I have taken during chemo that I have blown up quite a bit. I know that I will lose it because I already did it once and I am more determined than ever. I am waiting for my NutriSystem to arrive and I am starting my diet after the 4th of July.
I thought the day would never come and it seemed so far away when I began my treatment in March. Tomorrow is the day of my last chemotherapy treatment. I am not sure if I am excited about it or not. I feel kind of indifferent about it because I feel like I should be doing something else to help myself. Unfortunately since my tumors were whats called Triple Negative (it means that the tumor is estrogen, progesterone and Her2 receptor NEGATIVE and cannot be treated with tamoxifen, arimidex or herceptin because it wont respond to them). Being triple negative has its good and bad things about it. The bad is that if you are triple negative you have the highest rate of recurrance within 2.5-5 years. After you have reached the 5 year mark you actually have a lower recurrance risk than the people who are positive for any of those 3 receptors. What many people dont understand about breast cancer is that there is no 5 year rule like other cancers. With most other cancers after 5 years they say you are cancer free or cured (many dont like the use of that word because there is no 'cure' for cancer) but with breast cancer they cant say that because you can have a recurrance 10, 15 or 20 years down the road. When I first read that I was stunned because I didnt know that but I made up my mind not to dwell on statistics and numbers because everyone is different and they cant classify you or throw you into this group or that group of women with BC. Mark Twain once said that there are 3 types of lies: Lies, damned lies and statistics. This is so true because with all the medical problems I have had I was supposed to be in the higher statistical range and not have the disease but I did. Thats why I hate numbers and statistics.
Well, I got to get to sleep because tomorrow is a big day and I have to see the pain specialist AFTER my treatment. I had no choice because he didnt have an appointment available before my treatment. I also have to do something nice for the nurses so I think DH and I are going to get some pastry for them. I want to do more but dont have enough time in the morning plus I have to think about what I want to get them. They were all wonderful and I love every one of them.
A special thanks to my "THREE MUSKETEERS" who came through for me today with a surprise bouquet of flowers in celebration of my last treatment. But more so than the flowers and gifts given to me, they have shown me such support, love and compassion throughout this entire time I've been treated that it cant compare to any material gift. What they have given me cant be bought in any store. I love the three of them with my whole heart and they will be with me tomorrrow as I start another journey in my life.
Tuesday, June 27, 2006
Major Complaints
I thought it would be healthy for me to get these things out so I can feel better.
Things that have been upsetting, bothering, annoying and/or hurting me:
1) People who call and all they can talk about is cancer and my treatments.
Example~"Hi CB, how are you feeling? Did I wake you up?"
"No, I wasnt sleeping, just resting. I am feeling OK" (not sure I want to go into detail about whats been bothering me such as this rash and other stuff people dont want to hear thats TMI).
"Oh, you were resting? I shouldnt have bothered you. I'll call you back later then."
"No really, you are not bothering me. If I didnt want to talk I wouldnt have picked up the phone." (wondering if they have now taken offense to this statement).
"Did you have your last treatment yet or is it this week? Was it better than the last treatment?"
"No my last treatment is the 29th but I am not sure if it is going to be delayed due to the reaction I had."
"Oh, thats good, its almost over for you then." (Yeah right, its NEVER over for someone diagnosed with cancer with the fear of recurrence hanging over your shoulder. How I hate when people say this. I think I hate it more than- THINGS WILL GO BACK TO NORMAL WHEN YOU ARE DONE WITH TREATMENT AND YOU CAN GET ON WITH YOUR LIFE. I thought I was living my life RIGHT NOW. Things have been changed in ways people without cancer cannot imagine and they will never be the same. There is a NEW normal and I have to define it myself. I have to define it for me, my DH and my two children)
"Yeah right"
"Did you get your genetic testing results back yet?"
"Yes, I did and it was negative. I am happy about that"
"Thats wonderful, you dont have to worry about that now" (Very dumb statement here because I DO have to worry even though I dont have the genetic markers. I have to worry because of the fact that I am a cancer survivor and the risk of recurrence is always looming. Also just because they didnt find the genetic marker for BrCa1 or 2 they also tell you that they are discovering more genetic markers every day so I might have BrCa3 or 4 if they exist. With more research they will discover more and more which will be helpful for my children and all the children of women with BC).
"Oh, so and so has the gene you know. She's not to concerned right now because she is concentrating on her career. She's only 33 anyway so she has until she's 40 to think about what she is going to do".
"OK, well, cancer is not on a timer that you can set it and plan for it to happen. She should put her health first before her career. I was diagnosed when I was 34 and I did everything to prevent it, I still got it though." (I also wasnt going to say sorry that she has the gene, thats stupid because many people have the gene and dont know it plus why am I sorry? She DOESNT HAVE CANCER. It also makes me feel stupid because she's acting like she's going to be smarter than I was an avoid getting it at such a young age. I did everything in my power to prevent cancer and I also found that lump as soon as I possibly could have thanks to self-breast exam. My lump grew so fast that it wasnt there a month earlier when I did an exam and it was such a fast growing aggresive tumor that it spread to my lymph nodes already in that span of time! Oh but she's going to be smarter than me. If you have the gene you have 87-90% chance that you will get cancer in your life time. Yeah, it sucks but if you know that and can prevent it with a prophlactic mastectomy you can decrease that number to what the normal #'s are for people without the gene)
You get the point here from this example of a conversation with a relative. Sometimes it amazes me how stupid people can be. I do know their intentions are to be nice and comforting but it comes out wrong and annoys the crap out of me. They need to think before they talk.
2) People who constantly tell me to think positive and having that mindset is the best attitude to have because you will heal better and then the cancer has less of a chance at coming back. OK, first of all I know that I have to be positive and I am very positive. I need to be a little negative once in a while, its my right gosh darn it! These people could be talking about anything else with me and they chose this topic. Lets take a guess how many times a cancer patient has heard this, "Now, you know you have to think positive, thats half the battle." I dont disagree with this statement at all. Its very true. I just dont need to hear it 100 million times. The funny thing is that most of the people telling me to be positive are the most negative, pessamistic people around. If I could take a gander I would guess that they themselves would not heed their own advice if they were the ones in my shoes! Yes, its laughable but it annoys me. I would tell these people to look in the mirror, pretend that they have no hair, eyebrows or eyelashes. After that put on makeup that gives them dark circles under their eyes, swollen eyelids, yellow powder on their face or grey depending upon what chemo they were given a few days ago. THEN say to that person in the mirror, "YOU KNOW THE MOST IMPORTANT THING YOU CAN DO FOR YOURSELF IS TO THINK POSITIVE, ITS HALF THE BATTLE. My guess is that they wont say that statement to a cancer patient again any time soon.
3) When I was 1st diagnosed I cant tell you how many people called me to say they were sorry and whatnot. This complaint isnt about them saying they were sorry even though its a bad choice of words but anyway (please dont be offended if any one of you guys said it to me, I dont mean anyone here, I meant my dumb ass relatives who said it like I was dead already or planning my funeral) they could have said it in a different tone of voice OR said, "I am sorry to HEAR about your cancer".
The real complaint I was originally writing about is that people would say, "If there is ANYTHING, I MEAN ANYTHING I can do for you please let me know." Most of the time these statements would come from people I would NEVER ask for anything ever. Not because they arent nice or anything like that but because I dont think they would actually do what I would need them to do PLUS like I said I would never ask them even before I got sick. OK, so say Mary (a fictitious person used as an example), an aquaintance of mine, said this to me. She lives in NY about an hour away and has a full time job and kids of her own to deal with so if I need her to pick up the kids at school one day she would drop everything, including HER job and HER children and do this for me. NO, I dont think so. Remember, she's not a friend of mine but an aquaintance so for her to throw out a statement like, "If there is anything I can do..." is foolish on her part and means nothing. These people need to find something better to say, something that they can stand behind instead of statements they cant. Now I have FRIENDS that I KNOW would do anything for me. My friend J, is like that. If I needed her help, no matter what the reason, she would call in sick to work, leave her son with her Mom or sister, drive over 2 hours to my house from where she lives and do whatever I asked her to do. I know she would do it because she is my friend, has been for many years and has done things similar to that in the past for me as I have for her. She is like my sister. We can go for a few months without hearing from each other due to our crazy schedules and because life is busy for both of us. When we finally do get in touch with one another we pick up where we left off like time never passed between us. Thats the definition of a true friend. Someone who doesnt keep score as to who did what for whom and sh*t like that. I hate that sh*t. People who do that are to into themselves to care about anyone but themselves therefore incapable of having friends. I call them self-serving, self-imortant a-holes who will die alone due to this factor in their meager existance they call their life. Harsh but true.
Well, I know there will be more complaints and I wrote enough for people to read and hopefully not vomit! Actually, I have had a headache all day and I am going to TRY and get some sleep with the help of some pain medicine. I am stressing over the fact that I have my last treatment on Thursday and I am thinking of all the things that can go wrong with this one.
Update on the rash~Its looking good with the use of the cream. Its still itchy but no where near as itchy as it was before. I just hope the chemo doesnt make it come back or get worse but I will keep my hopes up.
Last chemotherapy is on Thursday, only 2 days away. I thought I would be happy and overjoyed over this but I find myself very upset and emotional. I feel like I am on the verge of crying all the time and its driving me crazy. I wish I could learn to meditate and do yoga. So many people say that it helps them relax. I wish I was one of those people. Oh yeah, most of the people that say it helps them dont have cancer either. I wonder if that makes a difference.
Things that have been upsetting, bothering, annoying and/or hurting me:
1) People who call and all they can talk about is cancer and my treatments.
Example~"Hi CB, how are you feeling? Did I wake you up?"
"No, I wasnt sleeping, just resting. I am feeling OK" (not sure I want to go into detail about whats been bothering me such as this rash and other stuff people dont want to hear thats TMI).
"Oh, you were resting? I shouldnt have bothered you. I'll call you back later then."
"No really, you are not bothering me. If I didnt want to talk I wouldnt have picked up the phone." (wondering if they have now taken offense to this statement).
"Did you have your last treatment yet or is it this week? Was it better than the last treatment?"
"No my last treatment is the 29th but I am not sure if it is going to be delayed due to the reaction I had."
"Oh, thats good, its almost over for you then." (Yeah right, its NEVER over for someone diagnosed with cancer with the fear of recurrence hanging over your shoulder. How I hate when people say this. I think I hate it more than- THINGS WILL GO BACK TO NORMAL WHEN YOU ARE DONE WITH TREATMENT AND YOU CAN GET ON WITH YOUR LIFE. I thought I was living my life RIGHT NOW. Things have been changed in ways people without cancer cannot imagine and they will never be the same. There is a NEW normal and I have to define it myself. I have to define it for me, my DH and my two children)
"Yeah right"
"Did you get your genetic testing results back yet?"
"Yes, I did and it was negative. I am happy about that"
"Thats wonderful, you dont have to worry about that now" (Very dumb statement here because I DO have to worry even though I dont have the genetic markers. I have to worry because of the fact that I am a cancer survivor and the risk of recurrence is always looming. Also just because they didnt find the genetic marker for BrCa1 or 2 they also tell you that they are discovering more genetic markers every day so I might have BrCa3 or 4 if they exist. With more research they will discover more and more which will be helpful for my children and all the children of women with BC).
"Oh, so and so has the gene you know. She's not to concerned right now because she is concentrating on her career. She's only 33 anyway so she has until she's 40 to think about what she is going to do".
"OK, well, cancer is not on a timer that you can set it and plan for it to happen. She should put her health first before her career. I was diagnosed when I was 34 and I did everything to prevent it, I still got it though." (I also wasnt going to say sorry that she has the gene, thats stupid because many people have the gene and dont know it plus why am I sorry? She DOESNT HAVE CANCER. It also makes me feel stupid because she's acting like she's going to be smarter than I was an avoid getting it at such a young age. I did everything in my power to prevent cancer and I also found that lump as soon as I possibly could have thanks to self-breast exam. My lump grew so fast that it wasnt there a month earlier when I did an exam and it was such a fast growing aggresive tumor that it spread to my lymph nodes already in that span of time! Oh but she's going to be smarter than me. If you have the gene you have 87-90% chance that you will get cancer in your life time. Yeah, it sucks but if you know that and can prevent it with a prophlactic mastectomy you can decrease that number to what the normal #'s are for people without the gene)
You get the point here from this example of a conversation with a relative. Sometimes it amazes me how stupid people can be. I do know their intentions are to be nice and comforting but it comes out wrong and annoys the crap out of me. They need to think before they talk.
2) People who constantly tell me to think positive and having that mindset is the best attitude to have because you will heal better and then the cancer has less of a chance at coming back. OK, first of all I know that I have to be positive and I am very positive. I need to be a little negative once in a while, its my right gosh darn it! These people could be talking about anything else with me and they chose this topic. Lets take a guess how many times a cancer patient has heard this, "Now, you know you have to think positive, thats half the battle." I dont disagree with this statement at all. Its very true. I just dont need to hear it 100 million times. The funny thing is that most of the people telling me to be positive are the most negative, pessamistic people around. If I could take a gander I would guess that they themselves would not heed their own advice if they were the ones in my shoes! Yes, its laughable but it annoys me. I would tell these people to look in the mirror, pretend that they have no hair, eyebrows or eyelashes. After that put on makeup that gives them dark circles under their eyes, swollen eyelids, yellow powder on their face or grey depending upon what chemo they were given a few days ago. THEN say to that person in the mirror, "YOU KNOW THE MOST IMPORTANT THING YOU CAN DO FOR YOURSELF IS TO THINK POSITIVE, ITS HALF THE BATTLE. My guess is that they wont say that statement to a cancer patient again any time soon.
3) When I was 1st diagnosed I cant tell you how many people called me to say they were sorry and whatnot. This complaint isnt about them saying they were sorry even though its a bad choice of words but anyway (please dont be offended if any one of you guys said it to me, I dont mean anyone here, I meant my dumb ass relatives who said it like I was dead already or planning my funeral) they could have said it in a different tone of voice OR said, "I am sorry to HEAR about your cancer".
The real complaint I was originally writing about is that people would say, "If there is ANYTHING, I MEAN ANYTHING I can do for you please let me know." Most of the time these statements would come from people I would NEVER ask for anything ever. Not because they arent nice or anything like that but because I dont think they would actually do what I would need them to do PLUS like I said I would never ask them even before I got sick. OK, so say Mary (a fictitious person used as an example), an aquaintance of mine, said this to me. She lives in NY about an hour away and has a full time job and kids of her own to deal with so if I need her to pick up the kids at school one day she would drop everything, including HER job and HER children and do this for me. NO, I dont think so. Remember, she's not a friend of mine but an aquaintance so for her to throw out a statement like, "If there is anything I can do..." is foolish on her part and means nothing. These people need to find something better to say, something that they can stand behind instead of statements they cant. Now I have FRIENDS that I KNOW would do anything for me. My friend J, is like that. If I needed her help, no matter what the reason, she would call in sick to work, leave her son with her Mom or sister, drive over 2 hours to my house from where she lives and do whatever I asked her to do. I know she would do it because she is my friend, has been for many years and has done things similar to that in the past for me as I have for her. She is like my sister. We can go for a few months without hearing from each other due to our crazy schedules and because life is busy for both of us. When we finally do get in touch with one another we pick up where we left off like time never passed between us. Thats the definition of a true friend. Someone who doesnt keep score as to who did what for whom and sh*t like that. I hate that sh*t. People who do that are to into themselves to care about anyone but themselves therefore incapable of having friends. I call them self-serving, self-imortant a-holes who will die alone due to this factor in their meager existance they call their life. Harsh but true.
Well, I know there will be more complaints and I wrote enough for people to read and hopefully not vomit! Actually, I have had a headache all day and I am going to TRY and get some sleep with the help of some pain medicine. I am stressing over the fact that I have my last treatment on Thursday and I am thinking of all the things that can go wrong with this one.
Update on the rash~Its looking good with the use of the cream. Its still itchy but no where near as itchy as it was before. I just hope the chemo doesnt make it come back or get worse but I will keep my hopes up.
Last chemotherapy is on Thursday, only 2 days away. I thought I would be happy and overjoyed over this but I find myself very upset and emotional. I feel like I am on the verge of crying all the time and its driving me crazy. I wish I could learn to meditate and do yoga. So many people say that it helps them relax. I wish I was one of those people. Oh yeah, most of the people that say it helps them dont have cancer either. I wonder if that makes a difference.
Saturday, June 24, 2006
Another drug reaction? Can it really be happening? Oh and the kids are both sick!
Didnt sleep much last night due to the "itch" and the heat and humidity. We had a power failure at around 4am and that woke me up because I heard the AC shut down and everything else that runs on electricity shut down also. All I kept thinking about was the food in the fridge going bad and I cringed
I did get back to sleep for a few hours but then had to get up to be at an OT appointment at 10:30am. I decided to stop at the oncologists office first so he could take a look at the rash on my neck again because it had gotten worse. I also had the rash located around my female regions and it looked bad, thats all I'll say. Sorry to gross anyone out. My Dr wasnt in so I saw one of his associates (a woman that I dont like). She brought me into an exam room and looked at my neck. I asked her if she wanted to see the other parts of my body that contained the rash. She said, no thats OK. OK, well, I would feel better if you looked at it, I said. She insisted that she didnt need to see it and that it was a drug rash from the Taxotere. She continued to ask me what I was doing for it and I told her about the benadryl and atarax for the itch and also the creams I had been using on it. I used an antibiotic, hydrocortisone, antifungal cream and powder and not all at the same time. None of them worked too well so then I was just using plain cornstarch to stop the itch and absorb the moisture. I asked her about my throat because I have no voice at the moment and both my kids are being treated for strep throats with antibiotics. Do you think she did a throat culture or blood cultures? NO, and that surprised me because my WBC count was extremely low a few days ago when I came in to have it checked. She looked down my throat and said it looked fine. Funny, when I looked down my throat WITH A FLASHLIGHT SO I COULD SEE, it was RED and had striations typical of a strep infection. So, no culture, no blood tests, no meds, nothing. This was turning into a supreme waste of my time and I was late for my OT appointment! She told me as I was leaving that I might want to see a dermatologist. Maybe my regular oncologist should have mentioned this to me the other day before he said that HE wanted to see me again if it got worse.
I post on a breast cancer board and another woman had the same skin breakout as me with the same chemo drug, Taxotere. She said the Dr had never seen anyone with those type of blisters/rash and that it must be herpes. To make a long story short the woman insisted she never had herpes and they ran a test because the Dr was an asshole and didnt listen to his patient. The tests showed that she was negative for the herpes virus and the Dr was WRONG. I wonder if he apologized to her over that? Most of these Dr's get tunnel vision and only see the part of the picture that they want to see instead of the WHOLE picture.
After that fiasco I went to my OT appointment and had my fluid filled arm wrapped because yet again my compression garment is not in (she said today it would probably be in later in the day WHOOPIE! later in the day when I am HOME where it can do me a whole lot of good)
We left the hospital just in time to make it to the counciling place where we live. I was a bit nervous about this entire thing but knew that it was something we have to do before we rip each others eyes out. The kids had to come with us because school is out and camp hasnt started yet. They were very accomadating to us with having another councilor to watch the kids while we were with the other. I cant say she watched them very well though because they were running up and down the stairs of the old colonial the counciling place is in and they are quite steep. I was silently biting my tongue inside the room as I heard their shennanigans from there. God forbid my kids behave for a moment that I REALLY need them to! The world would stop rotating on its axis. Yup, I have a great sense of humor which gets me through the hard times. I dont know what I would do without it.
The session went well and I cried a lot but that was to be expected. I wonder sometimes if my husband has any emotions because I never see them. Maybe he hides them well but I would like to see him express more of them so I can learn to understand him better.
I was totally drained when we got home and laid down for a little bit. I fell asleep for a few minutes but I needed to sleep hours to make up for the lack of sleep in my life lately. My throat was hurting more and the rash was getting worse with the increasing temperatures. I found some Zovirax cream (anti-viral) and used that on the rash to see if it would help. Heck it couldnt hurt me could it! Might as well give it a shot. I was concerned with the lack of attention the Dr gave my throat and my slight temperature I had. She asked me if I had a fever and I told her that I honestly didnt know and probably wouldnt be able to tell because I am on Oxycontin, oxycodone, Tylenol at times alternated with Motrin. If I had pain or fever from an infection it would be masked by these drugs. All the more reason she should have done a culture.
This evening at 8pm I called my regular internist who was on call to see if he could help me. He didnt call me back until after 10 because the pagers were down at the hospital. I am just glad he returned my call. I told him what happened at my oncologists office today and the rash and my throat and he felt very bad for me. He told me to start taking the Zithromax antibiotic I had in the house tonight and see if that would help to clear up my throat and also maybe help with the rashes which he thinks is a secondary infection. He thinks everything is related in some way to one another. I hope he is right. He also wants me to come down to his office tomorrow so he could get a look at the rash. I am not sure I could get to his office tomorrow because of the heavy, torrential rains we are going to be getting (starting tonight). They are predicting 5 inches of rain this weekend! Thats a lot of rain and flooding on the highways here which wont make it easy for me to get to the Dr's office.
I am so glad that I have such a wonderful Dr who genuinely cares about me as a person and not just as his patient who pays him to take care of me. He would go out of his way to help me or my DH and has many times in the past, not only for me but my parents and grandparents.
On the topic of HAIR~I have notices lots of fuzz and baby hairs all over my head. I am excited over this new discovery but a little disappointed over my eyebrows and eyelashes being totally gone. I just want my hair back so I can use hair products again. I know it sounds funny but I miss the smell of all that stuff
When my hair starts to fill in a little bit more I am going to use the Morocco Method products I bought right before my diagnosis. I read on their message boards that many people who lose their hair and undergo chemo use it with good results growing new, stronger, healthier hair. Plus, I wont have to use a lot like I did when my hair was 31" so thats a positive. The Zen Detox is something that looks spectacular for use after I finish my last round of chemo to make sure its out of my hair follicles and nothing is their to hinder the growth of new baby hairs.
I did get back to sleep for a few hours but then had to get up to be at an OT appointment at 10:30am. I decided to stop at the oncologists office first so he could take a look at the rash on my neck again because it had gotten worse. I also had the rash located around my female regions and it looked bad, thats all I'll say. Sorry to gross anyone out. My Dr wasnt in so I saw one of his associates (a woman that I dont like). She brought me into an exam room and looked at my neck. I asked her if she wanted to see the other parts of my body that contained the rash. She said, no thats OK. OK, well, I would feel better if you looked at it, I said. She insisted that she didnt need to see it and that it was a drug rash from the Taxotere. She continued to ask me what I was doing for it and I told her about the benadryl and atarax for the itch and also the creams I had been using on it. I used an antibiotic, hydrocortisone, antifungal cream and powder and not all at the same time. None of them worked too well so then I was just using plain cornstarch to stop the itch and absorb the moisture. I asked her about my throat because I have no voice at the moment and both my kids are being treated for strep throats with antibiotics. Do you think she did a throat culture or blood cultures? NO, and that surprised me because my WBC count was extremely low a few days ago when I came in to have it checked. She looked down my throat and said it looked fine. Funny, when I looked down my throat WITH A FLASHLIGHT SO I COULD SEE, it was RED and had striations typical of a strep infection. So, no culture, no blood tests, no meds, nothing. This was turning into a supreme waste of my time and I was late for my OT appointment! She told me as I was leaving that I might want to see a dermatologist. Maybe my regular oncologist should have mentioned this to me the other day before he said that HE wanted to see me again if it got worse.
I post on a breast cancer board and another woman had the same skin breakout as me with the same chemo drug, Taxotere. She said the Dr had never seen anyone with those type of blisters/rash and that it must be herpes. To make a long story short the woman insisted she never had herpes and they ran a test because the Dr was an asshole and didnt listen to his patient. The tests showed that she was negative for the herpes virus and the Dr was WRONG. I wonder if he apologized to her over that? Most of these Dr's get tunnel vision and only see the part of the picture that they want to see instead of the WHOLE picture.
After that fiasco I went to my OT appointment and had my fluid filled arm wrapped because yet again my compression garment is not in (she said today it would probably be in later in the day WHOOPIE! later in the day when I am HOME where it can do me a whole lot of good)
We left the hospital just in time to make it to the counciling place where we live. I was a bit nervous about this entire thing but knew that it was something we have to do before we rip each others eyes out. The kids had to come with us because school is out and camp hasnt started yet. They were very accomadating to us with having another councilor to watch the kids while we were with the other. I cant say she watched them very well though because they were running up and down the stairs of the old colonial the counciling place is in and they are quite steep. I was silently biting my tongue inside the room as I heard their shennanigans from there. God forbid my kids behave for a moment that I REALLY need them to! The world would stop rotating on its axis. Yup, I have a great sense of humor which gets me through the hard times. I dont know what I would do without it.
The session went well and I cried a lot but that was to be expected. I wonder sometimes if my husband has any emotions because I never see them. Maybe he hides them well but I would like to see him express more of them so I can learn to understand him better.
I was totally drained when we got home and laid down for a little bit. I fell asleep for a few minutes but I needed to sleep hours to make up for the lack of sleep in my life lately. My throat was hurting more and the rash was getting worse with the increasing temperatures. I found some Zovirax cream (anti-viral) and used that on the rash to see if it would help. Heck it couldnt hurt me could it! Might as well give it a shot. I was concerned with the lack of attention the Dr gave my throat and my slight temperature I had. She asked me if I had a fever and I told her that I honestly didnt know and probably wouldnt be able to tell because I am on Oxycontin, oxycodone, Tylenol at times alternated with Motrin. If I had pain or fever from an infection it would be masked by these drugs. All the more reason she should have done a culture.
This evening at 8pm I called my regular internist who was on call to see if he could help me. He didnt call me back until after 10 because the pagers were down at the hospital. I am just glad he returned my call. I told him what happened at my oncologists office today and the rash and my throat and he felt very bad for me. He told me to start taking the Zithromax antibiotic I had in the house tonight and see if that would help to clear up my throat and also maybe help with the rashes which he thinks is a secondary infection. He thinks everything is related in some way to one another. I hope he is right. He also wants me to come down to his office tomorrow so he could get a look at the rash. I am not sure I could get to his office tomorrow because of the heavy, torrential rains we are going to be getting (starting tonight). They are predicting 5 inches of rain this weekend! Thats a lot of rain and flooding on the highways here which wont make it easy for me to get to the Dr's office.
I am so glad that I have such a wonderful Dr who genuinely cares about me as a person and not just as his patient who pays him to take care of me. He would go out of his way to help me or my DH and has many times in the past, not only for me but my parents and grandparents.
On the topic of HAIR~I have notices lots of fuzz and baby hairs all over my head. I am excited over this new discovery but a little disappointed over my eyebrows and eyelashes being totally gone. I just want my hair back so I can use hair products again. I know it sounds funny but I miss the smell of all that stuff
When my hair starts to fill in a little bit more I am going to use the Morocco Method products I bought right before my diagnosis. I read on their message boards that many people who lose their hair and undergo chemo use it with good results growing new, stronger, healthier hair. Plus, I wont have to use a lot like I did when my hair was 31" so thats a positive. The Zen Detox is something that looks spectacular for use after I finish my last round of chemo to make sure its out of my hair follicles and nothing is their to hinder the growth of new baby hairs.
Sunday, June 18, 2006
Father's Day 2006
My husband had to work a long shift today because it was his weekend to work so my Mom came up to help me out with the kids. My Dad had taken my Grandmother down to the shore for her to spend time with my Great Aunts. They are all in their 80's and get along quite well together especially when they break out the cards to play poker with all the lose change they have in their purses. Its quite fun to watch them get so competative with one another! LOL.
The kids and I decided to be original and make some home made cards for DH and my Dad. They came out adorable and he loved them. My Mom still has to give my Dad his shirt that I bought him for Father's Day but she is going to be here a few days so who knows when she will see him again.
I actually got to use one of DH's fathers day gifts today even before he did. My Mom and Dad bought him a THERMOS Grill to GO and its like a huge George Forman grill with legs but it uses propane to cook. I made Honey Mustard Chicken with veggie kabobs and they came out great too. The problem with me today was that everything annoyed the hell out of me due to the pain I was in and that it was very hot outside which didnt make it any better. I am so tired right now that I cant focus to type the right letters and keep going back to fix it. Maybe I can do this better when I am caught up on my sleep? Sorry for such a short post but I have to get some shut eye if thats possible because sometimes when I am overtired I cant get to sleep and then get up all hours of the night and surf the web or watch TV, my other vice.
The kids and I decided to be original and make some home made cards for DH and my Dad. They came out adorable and he loved them. My Mom still has to give my Dad his shirt that I bought him for Father's Day but she is going to be here a few days so who knows when she will see him again.
I actually got to use one of DH's fathers day gifts today even before he did. My Mom and Dad bought him a THERMOS Grill to GO and its like a huge George Forman grill with legs but it uses propane to cook. I made Honey Mustard Chicken with veggie kabobs and they came out great too. The problem with me today was that everything annoyed the hell out of me due to the pain I was in and that it was very hot outside which didnt make it any better. I am so tired right now that I cant focus to type the right letters and keep going back to fix it. Maybe I can do this better when I am caught up on my sleep? Sorry for such a short post but I have to get some shut eye if thats possible because sometimes when I am overtired I cant get to sleep and then get up all hours of the night and surf the web or watch TV, my other vice.
Friday, June 16, 2006
My 7th Chemotherapy Treatment~June 15, 2006
I had my appointment today with the breast surgeon and we set the date for Aug. 15th for my surgery. I have to also make an appointment with the plastic surgeon and discuss what procedure we are going to choose for the reconstruction. I think I will feel a lot better about everything once I speak to the plastic surgeon. I also had a chance to speak to 2 ladies who had bilateral mastectomies. One was an older woman in her 50's who didnt have recon but uses prosthesis. They look good but they slide alot and I dont think I want to deal with that. You also have to wear different ones when you are swimming in a pool or any water because the others are not supposed to be submerged in water. The other woman is one that works in the Dr's office and she helped me out a lot with questions I had written down. She answered all of them and they look fabulous, like real breasts!
I also had my 7th Chemotherapy Treatment today and my first with TAXOTERE. I had a bad reaction to the TAXOL so the oncologist felt it was necessary to switch and avoid a repeat performance of the last time! I wasn't going to let that happen either. I had a little encounter with a lady sitting in my treatment seat. I went to sit in my seat and she had moved to another one which was in the treatment area when she should have been in the waiting room. People receiving chemo want privacy not some stranger sitting there watching what meds are being given to a patient. Anyway my husband went to sit in my seat that I always sit in and I said jokingly, “get out of my lucky seat! I need to sit there.”
This woman looked at me taking all my stuffed animals out and arrange them on the shelf next to me and gave me the weirdest look. I looked back at her and said that I am a bit superstitious and like things to be exactly the same way each time I get treated. That means I have the same seat and articles that I bring with me each and every time. She made some stupid comments about, “well, if that's what makes you happy.” She said it in a very condescending way though and it annoyed me. Another thing that I though was hilarious was that I overheard her saying that she has lived in the same neighborhood and cannot make any friends. She said, “I don't understand, I am a friendly person how come I cant make friends?” Well lady let me clue you in on that one. Maybe its because you think you are better than everyone else and no one wants friends like that. I was laughing out loud and I really couldn't care if she heard me or not. People like that are just annoying.
Joy was my nurse today and she gave me an IV anti-emetic, Benadryl, Decadron, and the TAXOTERE. I was so nervous, yet again due to the new drug, and was feeling a little weird when it was infused but overall it went well. The good thing is that the TAXOTERE can be infused a little bit quicker than the TAXOL was. I was glad that it was over as quickly as it was. I am feeling a bit run down and tired right now from the treatment. My body is just starting to hurt. Tomorrow I have an OT appointment that I hope I can make. The therapist said if I didn't feel good to give her a call and let her know so we can reschedule. I’ll see how I feel when I wake up in the morning.
I decided to put curlers in my wig tonight to give it a bit of a curl. When I washed it the other day it came out quite straight and I am missing my curls a whole bunch right now! This is the closest I can get to them so I hope they come out OK. I am going to leave them in until the hair is totally dry. I spritzed it with lavender water and aloe vera gel before I rolled each piece of hair.
I ate 1/4 of a Sara Lee pound cake and I want more! Man, do these steroids make you hungry! Its not even a normal hungry its ravenous. My Mom saw how depressed I was the other day that I was upset over the steroid weight gain and she offered to pay for the NutriSystem plan when I am finished with chemo. I am seriously considering it because there are 6 weeks after chemo is over and then I will have my surgery and I think that's a great amount of time to lose some weight, like 15 lbs. Its probably better to go into the surgery healthier and a bit slimmer.
I am hoping that I can keep the pain that comes with the TAXOTERE away with control through the pain meds, Right now my hip joints and knees are starting to hurt. I tool some Tylenol PM so hopefully it will make me sleep too!
I am mentioning in my blog that I am starting to see a nurse practitioner (Kathleen) who is a licensed family psychologist and since I have BC, its a free service. I spoke to her once on the phone about lots of things that are going on and how being sick exaggerates all the minor problems you had before. She agreed and gave me the name of a community services group in my town that sees patients on a sliding scale because those co-pays add up and right now we are short on the cash. My husband and I have our 1st appointment next week and I think its going to help a lot because he is having a difficult time talking to me and we are also fighting way too much. No one said marriage was easy and its even harder when one partner has a diagnosis of cancer. We both love one another and I want to make things right so we have a healthier marriage and that this cancer doesn't destroy that. Kathleen had said that we probably only need a few sessions to talk and learn better communications techniques which all married people should know. I am not embarrassed to say these things because they're are so many women who go through this and have problems with their family and spouse. If this can help one person then I have done my job, whatever that it! LOL
I also had my 7th Chemotherapy Treatment today and my first with TAXOTERE. I had a bad reaction to the TAXOL so the oncologist felt it was necessary to switch and avoid a repeat performance of the last time! I wasn't going to let that happen either. I had a little encounter with a lady sitting in my treatment seat. I went to sit in my seat and she had moved to another one which was in the treatment area when she should have been in the waiting room. People receiving chemo want privacy not some stranger sitting there watching what meds are being given to a patient. Anyway my husband went to sit in my seat that I always sit in and I said jokingly, “get out of my lucky seat! I need to sit there.”
This woman looked at me taking all my stuffed animals out and arrange them on the shelf next to me and gave me the weirdest look. I looked back at her and said that I am a bit superstitious and like things to be exactly the same way each time I get treated. That means I have the same seat and articles that I bring with me each and every time. She made some stupid comments about, “well, if that's what makes you happy.” She said it in a very condescending way though and it annoyed me. Another thing that I though was hilarious was that I overheard her saying that she has lived in the same neighborhood and cannot make any friends. She said, “I don't understand, I am a friendly person how come I cant make friends?” Well lady let me clue you in on that one. Maybe its because you think you are better than everyone else and no one wants friends like that. I was laughing out loud and I really couldn't care if she heard me or not. People like that are just annoying.
Joy was my nurse today and she gave me an IV anti-emetic, Benadryl, Decadron, and the TAXOTERE. I was so nervous, yet again due to the new drug, and was feeling a little weird when it was infused but overall it went well. The good thing is that the TAXOTERE can be infused a little bit quicker than the TAXOL was. I was glad that it was over as quickly as it was. I am feeling a bit run down and tired right now from the treatment. My body is just starting to hurt. Tomorrow I have an OT appointment that I hope I can make. The therapist said if I didn't feel good to give her a call and let her know so we can reschedule. I’ll see how I feel when I wake up in the morning.
I decided to put curlers in my wig tonight to give it a bit of a curl. When I washed it the other day it came out quite straight and I am missing my curls a whole bunch right now! This is the closest I can get to them so I hope they come out OK. I am going to leave them in until the hair is totally dry. I spritzed it with lavender water and aloe vera gel before I rolled each piece of hair.
I ate 1/4 of a Sara Lee pound cake and I want more! Man, do these steroids make you hungry! Its not even a normal hungry its ravenous. My Mom saw how depressed I was the other day that I was upset over the steroid weight gain and she offered to pay for the NutriSystem plan when I am finished with chemo. I am seriously considering it because there are 6 weeks after chemo is over and then I will have my surgery and I think that's a great amount of time to lose some weight, like 15 lbs. Its probably better to go into the surgery healthier and a bit slimmer.
I am hoping that I can keep the pain that comes with the TAXOTERE away with control through the pain meds, Right now my hip joints and knees are starting to hurt. I tool some Tylenol PM so hopefully it will make me sleep too!
I am mentioning in my blog that I am starting to see a nurse practitioner (Kathleen) who is a licensed family psychologist and since I have BC, its a free service. I spoke to her once on the phone about lots of things that are going on and how being sick exaggerates all the minor problems you had before. She agreed and gave me the name of a community services group in my town that sees patients on a sliding scale because those co-pays add up and right now we are short on the cash. My husband and I have our 1st appointment next week and I think its going to help a lot because he is having a difficult time talking to me and we are also fighting way too much. No one said marriage was easy and its even harder when one partner has a diagnosis of cancer. We both love one another and I want to make things right so we have a healthier marriage and that this cancer doesn't destroy that. Kathleen had said that we probably only need a few sessions to talk and learn better communications techniques which all married people should know. I am not embarrassed to say these things because they're are so many women who go through this and have problems with their family and spouse. If this can help one person then I have done my job, whatever that it! LOL
Saturday, June 10, 2006
Look Good, Feel Better
JUNE 8, 2006~I promised to write about the LOOK GOOD FEEL BETTER class that I attended last night so here it is. There were about 12-14 women there and we all had to say a little something about ourselves which was somewhat emotional for me but I got through it. Most of the ladies there were older than me making me the youngest one there. One of the ladies there was actually a patient of my husband's when she was in the hospital a few months ago. When I did my intoduction she was shocked when I mentioned that my husband was an oncology nurse upstairs. I guess it is ironic that he is an oncology nurse and I get cancer. After the intros we started talking about headcoverings and different ways to wear them (which I already am extremely good at I must say) but I paid attention like a good student would. There was a lady there that went over all the different types of wigs out there and how to care for them. I didnt wear my wig last night due to the fact it was raining cats and dogs and I didnt want to damage it because its a human hair wig and getting the lace top wet can cause the hair to loosen up and fall out. Then it was onto the good bag filled with all kinds of cosmetics. There were lipsticks from Origins, Aveda, & Oil Of Olay. Cleansers from Eucerin and toner from AVON with the matching cream, Estee Lauder blush, mascara and liquid shadow, Aveda Blush, Merle Norman eye color, liners and brow pencils, Channel foundation, Clinique sunblock moisturizer and concealer, A big bottle of body cream, q-tips, and a few other things I cant remember. They went step by step on how to apply (which I think I am pretty good at) and the instructor was a Mary Kay rep and I used to do that so I know the whole presentation already. I did learn a few things about what color I am. According to the MK lady I am a "Cool" which means I look good in blues, pinks, etc. I wear lots of pink because its my favorite color. Overall it was a good time had by all and I was so happy to see some ladies 6 months post chemo with their heads covered in thick curly hair. I cant wait for that to be me one day soon.
This morning my skin looked a lot worse so I headed down to the Dr's office so he could take a look at it. When he saw it he knew right away it was a drug reaction rash from the Taxol. I was a little upset because now they might have to change up my chemo and give me Taxotere or Abraxane instead of the Taxol. They are both molecularly different so the chances of a reaction are slim but with me you never know thats why I dont believe Dr's when they give me the statistics on something.
The Dr gave me IV Benadryl and Tagamet which took about an hour. Good thing I wasnt driving because the benadrly made me sleepy. Dr also wrote me a presription for Atarax which is an antihistasmine and in my opinion, better than benadryl for the itch. My hands (now both of them, not just the left, is so swollen that I physically cant make a fist. I have an OT appointment tomorrow with the therapist and hopefully she will have my compression sleeve that I have been waiting weeks to get. In the meantime more swelling is occuring and I dont want it to be irreversible.
When I arrived home I laid down and decided to take a nap before dinner because I didnt sleep well last night due waking up to scratch this damn itch! All of a sudden a horrible vice like gripping pain in my stomach woke me up and I was bolt upright in the bed then doubled over crying thinking I was going to die. Yes, it was that bad. My DH immediately called the Dr and he seems to think the steroids are causing that pain and to stop taking them for 24 hours and then resume. Also he wants me to up my dosage of pain meds but thats not such a bad thing. The bad thing is that for this type of pain nothing is helping me including the pain meds. Of course if it gets worse I have to go to the ER which I am trying to avoid at all cost. I had a bad experience with them properly treating my pain and I had to take my OWN meds that I brought with me! Hopefully the break from the steroid will help out a bit.
JUNE 10, 2006~Yesterday I went to the hospital to have an abdominal x-ray because the pain was unbearable. It was so bad that I couldnt even swallow due to my stomach spasming. The results of the x-ray showed a HUGE "back-up" and the Dr told me to take Magnesium citrate and get it out. The back up in my intestines was causing my whole intestinal tract to spasm and causing the pain. I took the whole bottle of Mag Citrate yesterday and half of another bottle today. I am feeling much better after spending some time in the bathroom. The funny thing is that I was never constipated in any way so how was I to know that I had this problem? The key is to avoid it in the future.
I still have the hives/rash and itch. My hands are swollen from the intense scratching and its driving me insane, even with all the anti-histamines and the steroids. I really hope that the Dr is not going to give me the Taxol again when I have my treatment on June 15th. I dont want to go through this again. There are other alternatives to the Taxol such as Taxotere and Abraxane. It doesnt matter because I will refuse to have the Taxol administered. I will advocate my patient rights if I have to.
This morning my skin looked a lot worse so I headed down to the Dr's office so he could take a look at it. When he saw it he knew right away it was a drug reaction rash from the Taxol. I was a little upset because now they might have to change up my chemo and give me Taxotere or Abraxane instead of the Taxol. They are both molecularly different so the chances of a reaction are slim but with me you never know thats why I dont believe Dr's when they give me the statistics on something.
The Dr gave me IV Benadryl and Tagamet which took about an hour. Good thing I wasnt driving because the benadrly made me sleepy. Dr also wrote me a presription for Atarax which is an antihistasmine and in my opinion, better than benadryl for the itch. My hands (now both of them, not just the left, is so swollen that I physically cant make a fist. I have an OT appointment tomorrow with the therapist and hopefully she will have my compression sleeve that I have been waiting weeks to get. In the meantime more swelling is occuring and I dont want it to be irreversible.
When I arrived home I laid down and decided to take a nap before dinner because I didnt sleep well last night due waking up to scratch this damn itch! All of a sudden a horrible vice like gripping pain in my stomach woke me up and I was bolt upright in the bed then doubled over crying thinking I was going to die. Yes, it was that bad. My DH immediately called the Dr and he seems to think the steroids are causing that pain and to stop taking them for 24 hours and then resume. Also he wants me to up my dosage of pain meds but thats not such a bad thing. The bad thing is that for this type of pain nothing is helping me including the pain meds. Of course if it gets worse I have to go to the ER which I am trying to avoid at all cost. I had a bad experience with them properly treating my pain and I had to take my OWN meds that I brought with me! Hopefully the break from the steroid will help out a bit.
JUNE 10, 2006~Yesterday I went to the hospital to have an abdominal x-ray because the pain was unbearable. It was so bad that I couldnt even swallow due to my stomach spasming. The results of the x-ray showed a HUGE "back-up" and the Dr told me to take Magnesium citrate and get it out. The back up in my intestines was causing my whole intestinal tract to spasm and causing the pain. I took the whole bottle of Mag Citrate yesterday and half of another bottle today. I am feeling much better after spending some time in the bathroom. The funny thing is that I was never constipated in any way so how was I to know that I had this problem? The key is to avoid it in the future.
I still have the hives/rash and itch. My hands are swollen from the intense scratching and its driving me insane, even with all the anti-histamines and the steroids. I really hope that the Dr is not going to give me the Taxol again when I have my treatment on June 15th. I dont want to go through this again. There are other alternatives to the Taxol such as Taxotere and Abraxane. It doesnt matter because I will refuse to have the Taxol administered. I will advocate my patient rights if I have to.
Thursday, June 08, 2006
One Day at a Time
One Day at a Time
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.
One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.
One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.
Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."
Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.
One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.
by Annie Johnson Flint
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.
One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.
One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.
Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."
Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.
One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.
by Annie Johnson Flint
Monday, June 05, 2006
Kyrie Eleison
Mister Mr~Kyrie
Kyrie eleison, kyrie eleison, kyrie
The wind blows hard against this mountain side,
across the sea into my soul
It reaches into where I cannot hide,
setting my feet upon the road
My heart is old, it holds my memories,
my body burns a gemlike flame
Somewhere between the soul and soft machine,
is where I find myself again
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
When I was young I thought of growing old,
of what my life would mean to me
Would I have followed down my chosen road,
or only wished what I could be
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
oh oh oh oh oh oh oh
oh oh oh oh oh oh oh
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
I just heard this song on the radio and it brought back some great memories.
I went to a private, Catholic high school and before I graduated the school gave us the opportunity to go on a retreat. I wanted my best friend to go with me but she said it was too expensive for her ($100-3 days/2 nights with meals included) and she decided not to go. The whole purpose of the retreat was to reflect on yourself and spirituality so I was glad to be alone. Many girls (not my close friends at all) that had their clique of friends didnt get much out of the retreat from what I observed because they were doing drugs and other illegal stuff I didnt want to know about. Talk about being disrespectful. I avoided them the whole time.
The retreat was on a little island off of Long Island, NY and was run by the Cappucin monks who are very liberal compared to the Roman Catholic priests. They are a part of the Catholic Church but you would never have guessed it by the exciting way they approached running the retreat for us. They would have meditation sessions with us and play current popular music at the time (this was the 80's so just imagine). They played U2's STILL HAVENT FOUND WHAT I AM LOOKING FOR and IN THE NAME OF LOVE which are great songs with huge references to Jesus. I was fortunate to have my own room and didnt have to deal with a roomate so that made me even happier and I was able to get a lot out of the retreat and reflect on where I was headed with my life. In the morning they would wake us up with music played over the loudspeakers in every room. One morning they played KYRIE by MISTER MR. It happened to be one of my favorite songs at the time along with all of MISTER MR'S songs. They actually played another song called BROKEN WINGS in the chapel where we attended mass. During confession they played lots of current rock songs that had religious meaning or significance of some kind in their lyrics. The song KYRIE was always my favorite and I would love when they played it. I think that it pertains to my life right now and thats the reason it brought back this specific memory of the retreat.
Basically it means "Lord, have mercy". In church during mass its said as a prayer:
Lord, have mercy
Christ, have mercy
Lord, have mercy.
Its said 3 times for the Trinity which is the Father, Son and Holy Spirit.
Right now it has meaning for me because God is guiding me down a road that I cannot see and through my belief and faith in him I know that everything will be OK and he will protect me.
I certainly needed some type of wake up call like this song being played on the radio today. I have been feeling really crappy the past few days. I have been angry, depressed, easily pissed off and starting fights with my loved ones and other behaviors that arent healthy to be stuck in. I mean its perfectly normal and healthy to have all these emotions because I am only human and I cant be happy and positive all the time. Pain is causing me to act this way, I am totally convinced. I was in so much pain last night that I couldnt get to sleep until after 2:30am. I hate when that happens because I want to sleep now during the day! I've been thinking about the cancer coming back and what would happen if I had a recurrence. My genetic test results will be coming back on the 12th next week and I am not sure how I feel about it. If its positive I am going to have to have more surgery to remove my ovaries and I just dont want any more surgery! I am sick of procedures and surgeries. You would think that I would be a pro at it right now and I guess I am but I think of all the crap that can go wrong. I need to put my faith in God and put it in his hands because no amount of worrying and fretting over it will change anything except make me more anxious and nervous.
Kyrie eleison, kyrie eleison, kyrie
The wind blows hard against this mountain side,
across the sea into my soul
It reaches into where I cannot hide,
setting my feet upon the road
My heart is old, it holds my memories,
my body burns a gemlike flame
Somewhere between the soul and soft machine,
is where I find myself again
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
When I was young I thought of growing old,
of what my life would mean to me
Would I have followed down my chosen road,
or only wished what I could be
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
oh oh oh oh oh oh oh
oh oh oh oh oh oh oh
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light
I just heard this song on the radio and it brought back some great memories.
I went to a private, Catholic high school and before I graduated the school gave us the opportunity to go on a retreat. I wanted my best friend to go with me but she said it was too expensive for her ($100-3 days/2 nights with meals included) and she decided not to go. The whole purpose of the retreat was to reflect on yourself and spirituality so I was glad to be alone. Many girls (not my close friends at all) that had their clique of friends didnt get much out of the retreat from what I observed because they were doing drugs and other illegal stuff I didnt want to know about. Talk about being disrespectful. I avoided them the whole time.
The retreat was on a little island off of Long Island, NY and was run by the Cappucin monks who are very liberal compared to the Roman Catholic priests. They are a part of the Catholic Church but you would never have guessed it by the exciting way they approached running the retreat for us. They would have meditation sessions with us and play current popular music at the time (this was the 80's so just imagine). They played U2's STILL HAVENT FOUND WHAT I AM LOOKING FOR and IN THE NAME OF LOVE which are great songs with huge references to Jesus. I was fortunate to have my own room and didnt have to deal with a roomate so that made me even happier and I was able to get a lot out of the retreat and reflect on where I was headed with my life. In the morning they would wake us up with music played over the loudspeakers in every room. One morning they played KYRIE by MISTER MR. It happened to be one of my favorite songs at the time along with all of MISTER MR'S songs. They actually played another song called BROKEN WINGS in the chapel where we attended mass. During confession they played lots of current rock songs that had religious meaning or significance of some kind in their lyrics. The song KYRIE was always my favorite and I would love when they played it. I think that it pertains to my life right now and thats the reason it brought back this specific memory of the retreat.
Basically it means "Lord, have mercy". In church during mass its said as a prayer:
Lord, have mercy
Christ, have mercy
Lord, have mercy.
Its said 3 times for the Trinity which is the Father, Son and Holy Spirit.
Right now it has meaning for me because God is guiding me down a road that I cannot see and through my belief and faith in him I know that everything will be OK and he will protect me.
I certainly needed some type of wake up call like this song being played on the radio today. I have been feeling really crappy the past few days. I have been angry, depressed, easily pissed off and starting fights with my loved ones and other behaviors that arent healthy to be stuck in. I mean its perfectly normal and healthy to have all these emotions because I am only human and I cant be happy and positive all the time. Pain is causing me to act this way, I am totally convinced. I was in so much pain last night that I couldnt get to sleep until after 2:30am. I hate when that happens because I want to sleep now during the day! I've been thinking about the cancer coming back and what would happen if I had a recurrence. My genetic test results will be coming back on the 12th next week and I am not sure how I feel about it. If its positive I am going to have to have more surgery to remove my ovaries and I just dont want any more surgery! I am sick of procedures and surgeries. You would think that I would be a pro at it right now and I guess I am but I think of all the crap that can go wrong. I need to put my faith in God and put it in his hands because no amount of worrying and fretting over it will change anything except make me more anxious and nervous.
Saturday, June 03, 2006
Talk to the (swollen) hand
Its 10:30pm and my arm is more swollen than this afternoon. I decided to let my husband wrap it for a few hours to see if the swelling would come down. Wrapping it from the hand up to the shoulder pushes the excess lymph fluid back into the body so it drains out of the arm and theoretically brings down the swelling. I am going to try and leave it on until midnight or just after. Its too hot to leave it on all night plus it hurts like hell. Thank God my husband put in the air conditioners today!
I just hope it doesnt get more swollen because the pain seems to increase along with the swelling.
I just hope it doesnt get more swollen because the pain seems to increase along with the swelling.
Friday, June 02, 2006
My 6th Chemotherapy Treatment~June 1st, 2006
Yesterday I had my 6th chemotherapy treatment. It was my 2nd Taxol out of 4. That means I am almost done. I had Pat as my nurse and she was so excited that I am almost done. I cant get that excited yet, maybe at my next treatment. When I arrived I did the usual stuff, I went to the lab to have my blood drawn. Results were what they called excellent for someone going through dose dense chemo. My hematocrit or RBC's were actually improved from the last time. They were 32 last time and now they went up 2 pts to 34. I was shocked that they improved and also shocked that my WBC's werent elevated because I woke up with a slight cough. I think the cough was caused by taking too much benadryl the night before. When I took the Tylenol PM I took 2 pills and next time I know to take 1 only. It dried my lungs up too much so I learn from my mistakes.
After my blood results came in they set me up in my usual recliner in the back of the huge waiting room. I was seated next to an elderly lady, probably in her late 70's or early 80's who started a converstation with me while I started to get my pre-meds.
I was getting Decadron, another anti-emetic that I cant remember the name of, benadryl and tagamet, all IV, so I was a bit groggy while having this conversation with my elderly friend, Belle. She asked me what I was being treated for and I told her breast cancer. She asked me lots of questions about how the chemo made me feel and was surprised that she was feeling lots of the same things I was. There were times in our conversation where I can see that she was getting emotional and wanted to cry. I said a few times that its OK to cry and I do it alot. She smiled at me and didnt reply but I can tell she cried in private. I asked her what she was being treated for and she said she had a tumor on her ovary and that they were trying to shrink it but it wasnt shrinking after 6 months of chemo. Wow, I was shocked that she was going through this for 6 months and they were unable to remove it until it shrunk. I felt so bad for her that I wanted to get up and hug her but I was stuck in my recliner. When she was finished with her treatment she came over to me and put her hand on my arm and said, "Good luck to you". I wished her the same and we parted ways. I told her maybe we would run into each other again on a Thursday treatment day. What a sweet lady. Like all the other patients I have met during my treatments, I will never forget her.
My hubby went to get me a hamburger and fries from the hospital cafeteria across the street for my usual lunch during treatment. I couldnt finish it because my stomach felt funny and I didnt want to push it and then throw up. During the Taxol infusion I noticed my skin and nail beds were stark white! It scared the crap out of me when I saw it but my husband said it was common when Taxol is being given. That didnt make me feel any better. I fell asleep the last 60-90 minutes of the treatment and the office at the time was on lunch break so no one was in the waiting room. It was nice and quite and I was able to rest. The nurses and Dr were all whispering as not to wake me up. I thought that was so sweet of them.
On the way home the pain started to kick in. My joints, mostly in my lower body were not happy. Neuropathy was also occuring in my feet and hands. I hate that horrible feeling of numbness because it makes it difficult to walk and do things with your hands. My left arm is also more swollen today and I think that the Taxol in addition to the lymphedema causes that. I skipped my OT session today due to me not being able to get my butt out of bed. I dont have another appointment until next Friday and I hope the swelling doesnt get any worse.
I took a relaxing bath with my dead sea salts, Pink dead sea salts and extra epsom salts with lavender oil that I made myself. It doesnt make the pain go away but it certainly helps to ease the pain. I always feel better, more refreshed after I soak in the tub for awhile.
Its raining again today as it was all last night. I dont mind the rain its just the lightning and thunder that bothers me. I heard that a police officer was hit by lightning in NYC last night and he was in supposedly the safest place you can be in an electric storm, his car. No place is safe in a storm except my basement! You should see me when a storm is coming, I go into total anxiety attack mode and usually have to pop one of my anti-anxiety pills.
On the hair front I am still rubbing Moonchaser's oil into my head twice a day and there are more little hairs here and there. I am gaining more stubble or peach fuzz as I call it, than length, but thats OK because I know its coming, just not as fast as I want it to.
After my blood results came in they set me up in my usual recliner in the back of the huge waiting room. I was seated next to an elderly lady, probably in her late 70's or early 80's who started a converstation with me while I started to get my pre-meds.
I was getting Decadron, another anti-emetic that I cant remember the name of, benadryl and tagamet, all IV, so I was a bit groggy while having this conversation with my elderly friend, Belle. She asked me what I was being treated for and I told her breast cancer. She asked me lots of questions about how the chemo made me feel and was surprised that she was feeling lots of the same things I was. There were times in our conversation where I can see that she was getting emotional and wanted to cry. I said a few times that its OK to cry and I do it alot. She smiled at me and didnt reply but I can tell she cried in private. I asked her what she was being treated for and she said she had a tumor on her ovary and that they were trying to shrink it but it wasnt shrinking after 6 months of chemo. Wow, I was shocked that she was going through this for 6 months and they were unable to remove it until it shrunk. I felt so bad for her that I wanted to get up and hug her but I was stuck in my recliner. When she was finished with her treatment she came over to me and put her hand on my arm and said, "Good luck to you". I wished her the same and we parted ways. I told her maybe we would run into each other again on a Thursday treatment day. What a sweet lady. Like all the other patients I have met during my treatments, I will never forget her.
My hubby went to get me a hamburger and fries from the hospital cafeteria across the street for my usual lunch during treatment. I couldnt finish it because my stomach felt funny and I didnt want to push it and then throw up. During the Taxol infusion I noticed my skin and nail beds were stark white! It scared the crap out of me when I saw it but my husband said it was common when Taxol is being given. That didnt make me feel any better. I fell asleep the last 60-90 minutes of the treatment and the office at the time was on lunch break so no one was in the waiting room. It was nice and quite and I was able to rest. The nurses and Dr were all whispering as not to wake me up. I thought that was so sweet of them.
On the way home the pain started to kick in. My joints, mostly in my lower body were not happy. Neuropathy was also occuring in my feet and hands. I hate that horrible feeling of numbness because it makes it difficult to walk and do things with your hands. My left arm is also more swollen today and I think that the Taxol in addition to the lymphedema causes that. I skipped my OT session today due to me not being able to get my butt out of bed. I dont have another appointment until next Friday and I hope the swelling doesnt get any worse.
I took a relaxing bath with my dead sea salts, Pink dead sea salts and extra epsom salts with lavender oil that I made myself. It doesnt make the pain go away but it certainly helps to ease the pain. I always feel better, more refreshed after I soak in the tub for awhile.
Its raining again today as it was all last night. I dont mind the rain its just the lightning and thunder that bothers me. I heard that a police officer was hit by lightning in NYC last night and he was in supposedly the safest place you can be in an electric storm, his car. No place is safe in a storm except my basement! You should see me when a storm is coming, I go into total anxiety attack mode and usually have to pop one of my anti-anxiety pills.
On the hair front I am still rubbing Moonchaser's oil into my head twice a day and there are more little hairs here and there. I am gaining more stubble or peach fuzz as I call it, than length, but thats OK because I know its coming, just not as fast as I want it to.
Wednesday, May 31, 2006
Updates and stuff
I woke up this morning naseaus and dry heaving. I hadnt felt this way since the last chemo drug I was on many weeks ago. I took some Zofran and prayed that it would subside. My stomach started to hurt like hell right afterwards. It was a crazy morning in the bathroom, lets just put it that way. In between the bathroom visits I still was able to get the kids dressed and ready for school while my Mom gave them breakfast.
I had an Occupational Therapy appointment at the hospital today. It went well but my arm seems to have become more swollen over the past few days. I think it might have something to do with the heat and humidity we have been experiencing. The therapist said that I shouldnt wear my wedding band because its cutting off lymph flow back into my arm. I had to use soapy water to get this baby off my finger. When I was pregnant my husband had to purchase another wedding band for me because my original one didnt fit so thats what I am wearing now. I feel funny not wearing anything at all on my ring finger, like I am naked in a way.
After my appointment was over I had lunch with my husband. He was working today and his unit is on the same floor as my therapy. It was nice that the kitchen made us some turkey clubs with black bean soup and chocolate cake. My nausea improved and I was able to eat most of it.
On the way home I stopped at CVS to get some Tylenol PM. I have been taking Extra Strength Tylenol at bedtime with 25 mgs of Benadryl for pain and sleeplessness. Its been working really well for me and it helps with my allergies so I thought why not just take them both together? I think it will be easier than taking the 2 different drugs. I bought the generic CVS brand to save a few bucks.
Tomorrow I have my 6th chemo treatment, which is my 2nd out of 4 Taxol treatments. After tomorrow I will be 50% done with the Taxol and have only 2 more treatments to go and then I am officially done with chemo! I cant wait.
I have an appointment in a few weeks with the breast surgeon to discuss the bilateral mastectomy and also get some referrals for plastic surgeons. The wheels are turning and I am both anxious, nervous and a tiny bit excited over the whole thing coming to fruition. Hopefully I can update my journal tomorrow after my treatment if I am awake that is. This time I am going to try and sleep through my treatment (if thats even possible )
I had an Occupational Therapy appointment at the hospital today. It went well but my arm seems to have become more swollen over the past few days. I think it might have something to do with the heat and humidity we have been experiencing. The therapist said that I shouldnt wear my wedding band because its cutting off lymph flow back into my arm. I had to use soapy water to get this baby off my finger. When I was pregnant my husband had to purchase another wedding band for me because my original one didnt fit so thats what I am wearing now. I feel funny not wearing anything at all on my ring finger, like I am naked in a way.
After my appointment was over I had lunch with my husband. He was working today and his unit is on the same floor as my therapy. It was nice that the kitchen made us some turkey clubs with black bean soup and chocolate cake. My nausea improved and I was able to eat most of it.
On the way home I stopped at CVS to get some Tylenol PM. I have been taking Extra Strength Tylenol at bedtime with 25 mgs of Benadryl for pain and sleeplessness. Its been working really well for me and it helps with my allergies so I thought why not just take them both together? I think it will be easier than taking the 2 different drugs. I bought the generic CVS brand to save a few bucks.
Tomorrow I have my 6th chemo treatment, which is my 2nd out of 4 Taxol treatments. After tomorrow I will be 50% done with the Taxol and have only 2 more treatments to go and then I am officially done with chemo! I cant wait.
I have an appointment in a few weeks with the breast surgeon to discuss the bilateral mastectomy and also get some referrals for plastic surgeons. The wheels are turning and I am both anxious, nervous and a tiny bit excited over the whole thing coming to fruition. Hopefully I can update my journal tomorrow after my treatment if I am awake that is. This time I am going to try and sleep through my treatment (if thats even possible )
Wednesday, May 24, 2006
Arm Improvement!
I had my OT appointment today and it wasnt as bad as I thought it was going to be. My OT took a look at the lump in my arm and knew immediately what it was. Where the heck was she when I was in the ER the other night?? I could have used someone who knew what the helll they were talking about. She examined my arm and said the lump was the broken "cord" or scar tissue that was forming the tight rubber band like cords preventing me from moving my arm. She made me move my arm in positions that I was unable to move during previous therapy sessions. I am so happy right now that I am making some progress with this arm!
After she did manual drainage (lymphatic drainage) which involves lots of massage of the arm, chest and back to get the extra fluid that has accumulated in the arm, out of the arm and into the lymph system. She them wrapped it to push the fluid out of the arm. She hasnt received my custom compression sleeve yet so I have to have it wrapped. I am supposed to leave it on until tomorrow morning but its annoying the heck out of me because its hot and a bit cumbersome. I can move it but not as much as I would like. I am going to try and leave it on as long as I can. I have another appointment on Friday with her. She also told me that the cord that broke is hung up with the other scar tissue but with all the therapy it will break up and readsorb into the body. More good news!
After she did manual drainage (lymphatic drainage) which involves lots of massage of the arm, chest and back to get the extra fluid that has accumulated in the arm, out of the arm and into the lymph system. She them wrapped it to push the fluid out of the arm. She hasnt received my custom compression sleeve yet so I have to have it wrapped. I am supposed to leave it on until tomorrow morning but its annoying the heck out of me because its hot and a bit cumbersome. I can move it but not as much as I would like. I am going to try and leave it on as long as I can. I have another appointment on Friday with her. She also told me that the cord that broke is hung up with the other scar tissue but with all the therapy it will break up and readsorb into the body. More good news!
Sunday, May 21, 2006
Another Emergency Room Visit~May 20, 2006
Last night while I was getting undressed to take my bath, I noticed a huge lump on my left arm right above the bend in the elbow crease. This is the same arm that is being treated for lymphedema and cording by my Occupational Therapist. At first I was unsure as to what it could be and then a horrible thought crossed my mind. What if it was a clot? I immediatly called the DR and she told me to go to the ER and get an ultrasound so they could rule out a clot. I was so scared at this point that I was in tears and I think my kids were getting a little scared also. I didnt want to do that to them so I tried my best to calm myself and them down. My daughter was the one telling me that everything would be OK.
When I got to the hospital I was seen immediately by a Physician Assistant who knew nothing about pain control because she thought that 1 Percocet was going to help me. No, I dont think so deary especially when I take Oxycontin 2x a day in addition to oxycodone for breakthrough pain. Yup, 1 Percocet would be enough for my pinky finger pain. If she read my chart she would have known what meds I was taking to begin with. They called in an ultrasound tech to do my test and it happened to be one that my husband is pretty friendly with so he was telling me what he was seeing as he was doing it. He did the entire left arm and all the vessels including my carotid artery. All of them looked well according to him. I felt better after getting the results after the report was out and officially in my chart. So they ruled out a blood clot and I was extremely happy about that but still they didnt give me an answer as to what this lump is. My husband and I have our own theory of what it is. We both think its the lymphedema and fluid pooling in certain areas of my arm which is very common. It also could be that the cording the OT has been working on breaking has actually broken and thats what the lump is. The tissue and fluid there has to be readsorbed into my body and the only way to do that is to wear my compression stocking on my arm, which I am still waiting for, and to go to OT and have the therapist 'decongest' the arm and re route the fliud out of my arm. Sounds complicated but I dont think it is, just a pain in the a** or I should say arm
All I can say is thank God for pain medicine otherwise I could not be able to do anything.
On another note my friend called me yesterday afternoon (finally!) and we talked a bit. I feel better and less angry about the whole situation.
This Taxol is really causing my whole body to hurt especially my joints in my legs, hip and back. I know I mentioned it before but I thought it was going to go away and it hasnt as of yet. I am 3 days post treatment and I am hoping that it starts to feel better soon. I want a few pain free days between treatments, or almost pain free.
On the subject of hair~I have noticed that there are a few new hairs on my head that were not there last week. I am not sure if that means my hair is starting to grow back or what. I am going to continue with Moonchaser's SS Hair Oil at night and keep an eye on it.
When I got to the hospital I was seen immediately by a Physician Assistant who knew nothing about pain control because she thought that 1 Percocet was going to help me. No, I dont think so deary especially when I take Oxycontin 2x a day in addition to oxycodone for breakthrough pain. Yup, 1 Percocet would be enough for my pinky finger pain. If she read my chart she would have known what meds I was taking to begin with. They called in an ultrasound tech to do my test and it happened to be one that my husband is pretty friendly with so he was telling me what he was seeing as he was doing it. He did the entire left arm and all the vessels including my carotid artery. All of them looked well according to him. I felt better after getting the results after the report was out and officially in my chart. So they ruled out a blood clot and I was extremely happy about that but still they didnt give me an answer as to what this lump is. My husband and I have our own theory of what it is. We both think its the lymphedema and fluid pooling in certain areas of my arm which is very common. It also could be that the cording the OT has been working on breaking has actually broken and thats what the lump is. The tissue and fluid there has to be readsorbed into my body and the only way to do that is to wear my compression stocking on my arm, which I am still waiting for, and to go to OT and have the therapist 'decongest' the arm and re route the fliud out of my arm. Sounds complicated but I dont think it is, just a pain in the a** or I should say arm
All I can say is thank God for pain medicine otherwise I could not be able to do anything.
On another note my friend called me yesterday afternoon (finally!) and we talked a bit. I feel better and less angry about the whole situation.
This Taxol is really causing my whole body to hurt especially my joints in my legs, hip and back. I know I mentioned it before but I thought it was going to go away and it hasnt as of yet. I am 3 days post treatment and I am hoping that it starts to feel better soon. I want a few pain free days between treatments, or almost pain free.
On the subject of hair~I have noticed that there are a few new hairs on my head that were not there last week. I am not sure if that means my hair is starting to grow back or what. I am going to continue with Moonchaser's SS Hair Oil at night and keep an eye on it.
Friday, May 19, 2006
My 5th Chemotherapy Treatment~May 18, 2006
I was so nervous about yesterdays chemo treatment that I couldnt stop shaking the entire way there. My husband reassured me that I had already been through much worse before with the Adriamycin/Cytoxan combo and if I could get through that I could get through anything. I knew that he was right but its the fear of the unknown more than anything else that gets to you. I brought with me my arsenal of good luck stuffed animals and several prayer books, rosary, and other things that make the trip with me every time I get chemo. I dont necessarily think that I am superstitious but I just think that every little bit helps. I say if it makes you feel better than do it.
When we got there the 1st thing I had to do was have my blood drawn to make sure all was well with it so I could get my treatment. My Hematocrit dropped from 34 to 32 but its still in the acceptable range according to the DR. He said that I am young and I dont need any Procrit or Nupogen as of yet. I think that they are going to wait until my level hits around 28 or so to give me anything to bring it up. So I am a little anemic and I need to eat foods like meats and green leafy veggies to help.
When it was time for my treatment I sat in my usual treatment chair on the other side of the waiting room (there are huge jungle plants and a folding screen to block the area so its private), set up my animals and books on the table along with my drinks and various snacks. As you can see I always come prepared! One of my favorite nurses in the office, Joy, was doing my treatment with me today and she was extremly comforting to me when I started to cry out of nervousness and other things. She told me what she was going to do and that everything was going to be OK. I also let it spill out that I was upset over my friend and some family members not calling and such. I told her the story. She told me that it happens a lot to cancer patients and he hears it from the patients who she treats. Its not right but it happens and she cant explain it. The DR, who is such a wonderful guy, walked by while I was crying and also stopped to comfort me. He kinda heard what we were talking about and basically told me the same thing. He also said that right now I have to worry about ME and not silly friends who probably arent my friends to begin with if they act that way. I know that he's right but it still hurts. Joy told me that I could write a letter to her even if I dont decide to send it at least I get my feelings out. I decided to do that while she was starting my IV with the meds. Since I was so nervous she didnt give me a blow by blow description of what was in the IV and good thing because I think it would have been worse if I knew. I realized while I was writing that I felt a bit woozy and disconnected from my body. I grabbed Joy as she was walking by and told her that I thought something was wrong. She replied with, "Its the IV Benadryl you're getting". OK, that explains it! I asked her for some pillows and a blanket so I could close my eyes and maybe fall asleep. By this time my husband had returned with an awesome hamburger, fries and chocolate cake that he had made at the hospital across the street. It was awesome!
After I finished eating I didnt even realize that the TAXOL had been infusing for 20 minutes! I asked Joy when she was going to start it and she said that it had been running for the past 20 minutes and that everything was going great. She said that if I was going to have a reaction I would have had it already. Sounds like good news to me. I decided to complete the letter to my friend at that time. Another great nurse, Mary, walked by and asked what novel I was writing! I quickly told her the story of my friend (very quick) and she said that was a great idea. An older man who was at the desk came over to me and said, "I am sorry I couldnt help hearing what you were taling about and I would like to give you this (he handed me $10) to give to your Mom's cancer run AND your friend is not being a good friend to you". At first I couldnt believe it and then I said thank you. What a nice thing to do. Things like that reaffirm my belief that most people are good.
Last night I made the donation to my Mom's site along with my own personal donation in my other name, The Pink Panther. My Mom has been calling me that lately and I think its cute. She is now officially at $7,000!!! and she has 5 more months to go.
I fell asleep the last 45 minutes of the treatment and then it was all done. It took about 4.5 hours for the entire process which really went by quickly. I couldnt wait to get home and get into bed, I was so tired from the benadryl. When I got home I crawled into bed and slept for 3 hours. When I woke up I had a small piece of pizza that DH made the kids. Later on I had some ice cream because the Decadron was doing a number on my stomach and it does help. I was so tired that after watching a little TV, I fell asleep with my nightstand light on and TV left on. When I woke at 4 am the cat was begging me to feed him. My older cat was asleep on my bed and just wanted to sleep, what a good, mellow cat he is!I fed him and got back in bed.
Yes, I slept until 9am when the phone rang and it was Joy, the nurse, wanting to know how I was feeling. I told her I was tired and all my joints hurt especially my knees, ankles, hips, shoulders and back. She said that was normal and thats what the TAXOL does. So I am taking my pain meds and they help a lot. Thats all I can do.
Overall, the TAXOL was much better than the AC, no doubt! My body is hurting but I can deal with it. I guess I am used to pain. At least I'm not vomiting!
When we got there the 1st thing I had to do was have my blood drawn to make sure all was well with it so I could get my treatment. My Hematocrit dropped from 34 to 32 but its still in the acceptable range according to the DR. He said that I am young and I dont need any Procrit or Nupogen as of yet. I think that they are going to wait until my level hits around 28 or so to give me anything to bring it up. So I am a little anemic and I need to eat foods like meats and green leafy veggies to help.
When it was time for my treatment I sat in my usual treatment chair on the other side of the waiting room (there are huge jungle plants and a folding screen to block the area so its private), set up my animals and books on the table along with my drinks and various snacks. As you can see I always come prepared! One of my favorite nurses in the office, Joy, was doing my treatment with me today and she was extremly comforting to me when I started to cry out of nervousness and other things. She told me what she was going to do and that everything was going to be OK. I also let it spill out that I was upset over my friend and some family members not calling and such. I told her the story. She told me that it happens a lot to cancer patients and he hears it from the patients who she treats. Its not right but it happens and she cant explain it. The DR, who is such a wonderful guy, walked by while I was crying and also stopped to comfort me. He kinda heard what we were talking about and basically told me the same thing. He also said that right now I have to worry about ME and not silly friends who probably arent my friends to begin with if they act that way. I know that he's right but it still hurts. Joy told me that I could write a letter to her even if I dont decide to send it at least I get my feelings out. I decided to do that while she was starting my IV with the meds. Since I was so nervous she didnt give me a blow by blow description of what was in the IV and good thing because I think it would have been worse if I knew. I realized while I was writing that I felt a bit woozy and disconnected from my body. I grabbed Joy as she was walking by and told her that I thought something was wrong. She replied with, "Its the IV Benadryl you're getting". OK, that explains it! I asked her for some pillows and a blanket so I could close my eyes and maybe fall asleep. By this time my husband had returned with an awesome hamburger, fries and chocolate cake that he had made at the hospital across the street. It was awesome!
After I finished eating I didnt even realize that the TAXOL had been infusing for 20 minutes! I asked Joy when she was going to start it and she said that it had been running for the past 20 minutes and that everything was going great. She said that if I was going to have a reaction I would have had it already. Sounds like good news to me. I decided to complete the letter to my friend at that time. Another great nurse, Mary, walked by and asked what novel I was writing! I quickly told her the story of my friend (very quick) and she said that was a great idea. An older man who was at the desk came over to me and said, "I am sorry I couldnt help hearing what you were taling about and I would like to give you this (he handed me $10) to give to your Mom's cancer run AND your friend is not being a good friend to you". At first I couldnt believe it and then I said thank you. What a nice thing to do. Things like that reaffirm my belief that most people are good.
Last night I made the donation to my Mom's site along with my own personal donation in my other name, The Pink Panther. My Mom has been calling me that lately and I think its cute. She is now officially at $7,000!!! and she has 5 more months to go.
I fell asleep the last 45 minutes of the treatment and then it was all done. It took about 4.5 hours for the entire process which really went by quickly. I couldnt wait to get home and get into bed, I was so tired from the benadryl. When I got home I crawled into bed and slept for 3 hours. When I woke up I had a small piece of pizza that DH made the kids. Later on I had some ice cream because the Decadron was doing a number on my stomach and it does help. I was so tired that after watching a little TV, I fell asleep with my nightstand light on and TV left on. When I woke at 4 am the cat was begging me to feed him. My older cat was asleep on my bed and just wanted to sleep, what a good, mellow cat he is!I fed him and got back in bed.
Yes, I slept until 9am when the phone rang and it was Joy, the nurse, wanting to know how I was feeling. I told her I was tired and all my joints hurt especially my knees, ankles, hips, shoulders and back. She said that was normal and thats what the TAXOL does. So I am taking my pain meds and they help a lot. Thats all I can do.
Overall, the TAXOL was much better than the AC, no doubt! My body is hurting but I can deal with it. I guess I am used to pain. At least I'm not vomiting!
Tuesday, May 16, 2006
Occupational Therapy
I had my second occupational therapy appointment today at the hospital. It was painful but at least I know its for the greater good and I will be able to move my arm normally within 2 months or so. Heather (my OT) took measurements of my arm and ordered my compression stocking which will be ready later this week and will aid in the manual lymphatic drainage of my arm. It will also bring down the swelling that has developed in my arm (lymphedema). I am so happy that its going to go away and I wont have this horrendous pain when I move my arm in a certain way. I need to be able to do normal activities of daily living, like lift my kids and reach up to get something out of the cupboard. Right now I cant because my arm just wont go that high or in that direction. Overall, these 2 OT appointments have encouraged me a great deal and my arm already feels slightly different (in a better way) and its only going to get better.
My next chemotherapy treatment will be on Thursday this week and I am very nervous about it. It will be my 1st Taxol treatment and I have to be at the Dr's office early because it takes 4-5 hours to infuse all the drugs they have to give with the Taxol. I better bring something to read or do while I am there. That's where SuDoku puzzles come in handy!
My next chemotherapy treatment will be on Thursday this week and I am very nervous about it. It will be my 1st Taxol treatment and I have to be at the Dr's office early because it takes 4-5 hours to infuse all the drugs they have to give with the Taxol. I better bring something to read or do while I am there. That's where SuDoku puzzles come in handy!
Tuesday, May 09, 2006
Lymphedema
The Dr who specializes in physical medicine and dealing with lymphedema called me back today. She said that I would need PT for the arm. After surgery scar tissue forms where the lymph nodes are removed. A channel is formed and good tissue and scar tissue combine and it causes a back up of fluids to collect in the arm. The fluid in the arm is painful but so is the "cording" that forms with the scar tissue. It makes it impossible to use the arm in the normal ways it was used before the surgery. The cord needs to be stretched and broken in a sense so the arm can be used properly. If nothing is done to reverse this, cellulitis can form in the arm and infection can develop. If this happens it will put off my chemo treatments and I would need IV antibiotics. Ugh! Something else that I have to worry about, its crazy! Its very frustrating that I cant do normal things with my damn arm! I didnt realize how painful it would be either. I am very happy that someone can help with this problem though. My 1st appointment is on Friday with the Occupational Therapist.
On a more private note, the Dr told me that chemo would put me into state of temporary menapause. My last period was March 17th and I wasnt expecting it anytime soon because I was getting intense hot flashes. Today I started to bleed a little bit and called the office to make sure everything was supposed to be happening that way. The nurse said that they can never say never and to keep an eye to make sure the bleeding doesnt get too intense and cause other problems. So I am not even sure its a real period but if it is I am quite happy about it because I am too young to be in menapause.
I had my 2nd geneticist appointment yesterday. When you 1st go in to the geneticist they tell you that your chances of having the gene (BrCa1 or BrCa2) is 10%. After all the info is gathered about your family history they give you a new percentage. The chances that I have the gene for BC jumped from 10% to 60-80%.
On a more private note, the Dr told me that chemo would put me into state of temporary menapause. My last period was March 17th and I wasnt expecting it anytime soon because I was getting intense hot flashes. Today I started to bleed a little bit and called the office to make sure everything was supposed to be happening that way. The nurse said that they can never say never and to keep an eye to make sure the bleeding doesnt get too intense and cause other problems. So I am not even sure its a real period but if it is I am quite happy about it because I am too young to be in menapause.
I had my 2nd geneticist appointment yesterday. When you 1st go in to the geneticist they tell you that your chances of having the gene (BrCa1 or BrCa2) is 10%. After all the info is gathered about your family history they give you a new percentage. The chances that I have the gene for BC jumped from 10% to 60-80%.
Subscribe to:
Posts (Atom)