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 )

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!

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.

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!

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!

Tuesday, May 09, 2006


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%.

Saturday, May 06, 2006

My 4th Chemotherapy Treatment~May 4th, 2006

This last treatment was one hell of a whopper! I can compare it to the 1st treatment I had thats how aweful it was. I stayed in my pajamas all day yesterday and couldnt move from my bed. Everthing in my body hurts and the Decadron is causing horrendous stomach pain. I found out that with the next treatment (Taxol) I have to take a huge dose of Decadron the night before the treatment and then the day of the treatment and then they give me another dose IV right before the treatment. Thats a lot of Decadron! I hope it doesnt cause the same amount of stomach pain that I am getting now. The only good thing about this is that the closer I am getting to the end of it all and then no more chemo!! Then I have to concentrate on my surgery and reconstruction but I cant even think about that right now. One day at a time is my motto and thats how I get by.

A few of the nurses at the Dr's office said that they have seen many people have their hair start to grow back on the Taxol but I am not holding my breath. I have also heard women say that they did not have their hair grow back until after the Taxol was finished.

I spoke to the oncologist about the swelling in my left arm (lymphedema) and he wants me to see a Dr who is a specialist in Breast cancer and women suffering from lymphedema. I have to call and make an appointment with her. So far the swelling hasnt gotten any worse but it hasnt improved either.

Today my husband took my daughter to a birthday party and my Mom is here waching my son so I am able to rest in my bed. I was actually able to eat something last night for dinner and had some lunch today. I think the steroid makes you have an appetite of sorts when its not causing stomach pain that is. Its so funny because the only thing that settled my stomach the other day was a Drakes Devil Dog after I took the Decadron! I think thats hysterical. I have to ask my hubby to pick up some more of those high fattening snacks. Maybe thats why it helps, because it has a higher fat content that coats the stomach? Who knows, maybe thats why I am addicted to ice-cream lately.

I am trying my best not to order any Bare Escentuals from QVC today and its very hard! They have lots of very pretty colors and I am soooo tempted!

I am wearing my Queen Esther head scarf with all the pretty beading and adornments today and my son said to me, "I like that scarf Mommy" as clear as day. It was so cute I almost cried.

Monday, May 01, 2006

Dinner Date

My husband and I went out to eat Saturday night to celebrate my birthday which was Apr. 22nd. We went to our favorite Japanese Steakhouse that does hibatchi. We didnt sit at the hibatchi tables but decided to sit at a regular table because it was so crowded. They gave us the crappiest table that was in a very bad spot where people who passed by kept bumping my husband. Even though the table was in a bad spot we had a great meal. I was just happy to be out and eating in a restaurant! I caught a few people looking at me funny probably trying to figure out if I was wearing a wig or not. Maybe they were just trying to figure out how I got my hair so perfect! It amazes me how some people are so rude. I would never think about starring at someone who I thought was wearing a wig. I WOULD think that maybe this person is undergoing chemo or maybe has a very good reason that they are wearing a wig at such a young age. Since my diagnosis with BC I have encountered such wonderful people who are kind and compassionate but I have also encountered some very ignorant, stupid people and it drives me nuts.

My 4th treatment, and last AC treatment will be on Thursday May 4th. I am happy that the AC will be done and I am at the half way point with my chemo but a bit anxious about starting the 4 rounds of Taxol.