Yesterday was great. I never had one minute when I didn't feel perfectly healthy. I think I've turned a corner in the surgical recovery period, so I expect another great day today.
I have been doing all of my arm exercises, including the wall crawling, and it's going well. Since I'm left handed, this is my dominant arm, and I do want it to get full functionality again. I don't like the way my arm feels, but I'm doing the best I can to increase the mobility of it no matter what it feels like. It hurts, tingles, and feels numb and weak. I just ignore it as much as possible and do what I want with the arm, up to the point where I'm sure it would be unhealthy to push it farther. Last night I did some more reading on the axillary node dissection and arm problems. What I have is very, very common for women who have had 15 nodes removed. Many nerves are cut during the surgery. What I learned is that the numbness and tingling could last six months or more. That was a little unexpected.
I also got news from my good friend Barbara, a pharmacist. Her sister, also a pharmacist, had breast cancer. So, of course, they are sharing my news and giving me good advice. They were the first to throw this nugget of information into the ring: lobular cancer does not respond well to chemotherapy. HUH? I hadn't heard that before. Mark did a little research and found one study from 2006 that did find that to be true. This will certainly be a question for the medical oncologist tomorrow. What is the chance of a complete cure or non-recurrence if this is true? I'll let you know what the doctor says about it.
I read way too much last night on the side effects of chemotherapy, since I'm trying to come to grips with the real possibility that there will be chemo. Everything I read corroborates Dr. Dziuba's comment that if even one node has cancer, there will be chemo. The side effects of hair loss, fatigue, and nausea are well-known, but HOLY COW, there are lots of others: mouth and throat sores, metallic taste, loss of fingernails, heart complications, low white cell count, risk of serious infections, feeling like there is a bladder infection, numbness and tingling in the extremities, infertility, and much more. Fortunately most women do not get all of these side effects and doctors watch closely for them to alleviate them as much as possible, but no one knows which ones they will get until they are involved in it. Different drug "cocktails" cause different ones, as well, so until I know the specific drugs that I might be given, there isn't much point in thinking anymore about it.
Today I have a friend visiting for about an hour this morning, then Mark and I will head to the kosher Subway in Pikesville. He's still trying to find a kosher lunch that will allow him to eat in a succah. Since Pita Plus was closed, we didn't get to eat in a succah yesterday, but we know for sure the kosher Subway will be there and does have a succah.
I also never got to have that pedicure yesterday. We just ran out of time, so that's on the agenda for later today. Just because I'm not supposed to have professional manicures anymore (to minimize the risk of developing lymphedema), doesn't mean I can't get my pedicures! Mark will also go to the gym and buy some comics, and then he still has to do the week's grocery shopping. I expect today will be another great day!
I hope everyone who reads this blog also has a great day.
Good Morning Reby,
ReplyDeleteI am so glad that yesterday went well for you. It is wonderful to hear about you getting stronger every day. I expect you will just keep feeling better and better now. I am so glad that you are working hard on increasing mobility and functionality in your affected arm. I also had multiple lymph nodes removed from one arm 8 1/2 years ago and the arm exercises really helped me.
I am doing weekly chemo 3 out of 4 weeks a month. My oncologist plans to continue it indefinitely as long as I am tolerating it. There is a world of difference between the side effects of this chemo and the chemo that I took 8 1/2 years ago. 8 1/2 years ago the chemo was stronger than what I get now. There are side effects to my current chemo such as decreased blood counts, some mouth soreness, exhaustion, and constipation. All of these are liveable side effects at this point. I have figured out plans to combat them to the point where they don't significantly affect the quality of my life. The exhaustion side effect is a work in progress as I have to push myself to exercise and I am working on that. I think that the exhaustion will get better when I figure out how to get back to working at least part-time.
When I had chemo 8 1/2 years ago there were side effects, but I think what helped me was that I kept working during the chemo. I would have chemo on Friday and be back to work on Monday. I think since you are retired you could accomplish the same thing if you stay as busy as you can tolerate. For me it was helpful to keep on working because it left me less time to wonder and worry about how I was doing. With the immunosuppression some people thought I was crazy to keep working at a hospital as a nurse, but it worked for me and I didn't get sick from it. Well I don't mean to go on so long. I will keep you in my prayers. I hope that you have a wonderful and fun day today.
Thanks for this information. I like to learn about other people's situations. "Indefinitely" for the chemo would bother me, but as my husband just said, "Indefinite doesn't mean permanent." I hope he's right. I'm glad to know you are functioning well and managing the side effects. I will certainly keep everyone posted as to how it goes for me if I do, indeed, start that.
ReplyDeleteBecky,
ReplyDeleteI just wanted to write you back about my afternoon as it related to you. For some reason I have been having kind of a down day today--no real reason for it but it is there none the less. Well anyway I just spent the last hour reading the first part of your blog. It is fascinating to me and I enjoyed it very much. Needless to say it lifted my spirits. Thank you!
Also one thing to remember about your chemo if you do end up having it is that I think generally chemo for the initial diagnosis of breast cancer has a planned stop time. So I don't want you to have to worry about your chemo dr saying the "indefinitely" word when it comes to your timeline of chemo. I don't think that that is going to happen to you.
I am going to read the rest of your blog as I have a chance. I really think you should reconsider about writing a book. I think you are a great writer.
Have a great afternoon and I will be thinking about you tomorrow as you go and see the medical oncologist.
Thanks, Rhonda. I really don't think my chemo will go indefinitely, I just feel bad for you that you have to go through that. UGH. Is this recurrence in the other breast? How did you find it? Do you know when our support group will start again? Soon, I hope. I'm glad that you are enjoying the older blog posts. I had my daughter help me set it up, as you probably read, because I felt so out of control. Oh boy! Little did I know how out of control I would feel now!
ReplyDeleteHey thanks for writing back. It is fun for me to chat with you. My original cancer 8 1/2 years ago was 2 primary sites--one in each breast. My doctor said that only happens in 1 out of 100 women. ( If I had to beat the odds I only wish it would have been to win the lottery instead of in how my breast cancer presented itself.) Then in 2007 I had early stage endometrial cancer from the Tamoxifen taken for Breast Cancer. I just had to have surgery for that. Then in 2008 I had one spot of bone metastasis in my hip that was treated with radiation. Then in 2009 I started with a chronic cough. After many dr visits I finally was diagnosed with more bone metastasis and metastasis to my right pleural fluid. Right now I am doing well! I am so thankful to not be short of breath like I was. The chemo is an inconvenience, but I like how I am feeling now. By the way, I don't want to worry you with my story because I feel like we will both live for many years yet to fight cancer. I am still hoping that you don't have to have chemo, but if you do I know by now after reading so much of your blog that you are a fighter and you will get through it fine. Our cancer care support group will start up October 5th.
ReplyDeleteHey Rhonda, Yes, this is fun, although remember it's a public forum so anyone can read this. I did not remember that you had had this many cancer episodes. Wow! Kudos to YOU for a strong, brave attitude. You have been fighting the beast for a long time and still have a great outlook on it. I just hope I can handle this as well. I'm not going to hide the fact that I'm scared about it right now. I'll blog later today when I know what the status of the chemo is going to be.
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