Happy Memorial Day weekend, hope everyone is having a wonderful start to the summer. I had the first CSA dinner this weekend and everyone had a wonderful time. The food was an adventure for some and conversation very lively. So those that could not come to the first dinner, there will be another opportunity so stay tuned for next dinner invitation. Hopefully the weather will cooperate, and we can eat outside.
Week 9 we continued with the Taxol and Herceptin. One of the main reasons was that the rash was somewhat stable, and the neuropathy seemed to come and go based on level of inflammation that implied it could be temporary. I also was interested if there were any studies that indicated the effectiveness of Herceptin with only 8 weeks of Taxol rather than 12. Per my Oncologist none of the studies had a large enough sample to be able to draw any conclusions. The closer to the 12 Taxol and Herceptin infusions I could achieve the better off I would be. We continue to make the decision week to week.
During this week the rash on my arms does not seem to be responding to the cortisone cream as well. During the middle of the day and at night – about 5 hours after application – I start to feel itchy, the rash seems to become raised and look a bit more red. I cannot tell you how hard it is not to scratch. The neuropathy has settled into my finger tips and pads, and more often I am feeling pain in my hands which seems to be happening when my arms and hands feel swollen – inflammation.
I ask the oncology nurses what else I could do to eliminate the inflammation, and they had nothing else to tell me that I was not already doing. My decision at the very beginning of this journey to change my diet and eliminate foods that cause inflammation and other sources of inflammation in my life, has proven to be prophetic. I suspect I would be having a much more difficult time if I had not done this. Once the chemo started, I would not have had the ability for my body to fight back inflammation since the chemo creates it by its very presence.
The only day that I felt off this week – funky stomach - was Friday, but I was not able to walk that day due to appointments and running around I had to do. Walking in the morning makes all the difference as to how I feel the entire rest of the day. I am sure I feel it more acutely because of how sensitive my system is right now, but I am hopeful I can keep this up even after this year is over.
Things are starting to build, and I am feeling a bit more lethargic during the middle of the day. Not so much tired as unmotivated because things feel like too much to do. I can power through this most days, and usually I feel better afterwards. I have decided I am done with this game, I do not want to play anymore. No one seems to be listening, oh well I power on.
For my Lions this week, make sure you take advantage of the long weekend that marks the start of summer no matter where you are and what the weather is like. Make sure you hug those you care about and seize the moment for those spontaneous opportunities. We go around once; the moment may not present itself again. My seize the moment for this weekend, it to take the opportunity to meet new people and learn new things. Happy Memorial Day Weekend.
I skipped a week keeping everyone up to date. I know that many of you have been reaching out to find out if I am ok. All is well, it was just a bit challenging trying to manage all the symptoms that are starting to accumulate. And since I was not sure what the out come in week 7 would be, I just sort of skipped it to try to have more to tell you.
I should have known that one of the most challenging symptoms would be dry scaly skin, no one mentioned it to me, and it was not top of mind with everything else going on. I have a rash on my arms that has developed slowly over the last few weeks. Of course, week 7 & 8 were the weeks that it decided to become somewhat inflamed. In addition, my hands have severe eczema and my face is so dry and scaly that no lotion works. An hour after I apply the lotion it feels like nothing happened. The area around my eyes felt like I had scratched it they were so irritated. Thanks to me PEO sisters, the face wash and cream they found was able to do the trick. After applying three times a day for a few days, I was able to fix my face for the time being. And my oncologist recommended using a cortisone cream for my arms to repair and reduce the inflammation on my arms. All of this took a few days to a week to get under control.
Tip for anyone reading this: If you know of someone starting Chemo of any kind, 80 – 90% of chemo patients have skin issues. Lotions do not work. You need to find a good cream meant for chemo and radiation. I also recommend you start using it as soon as you start treatments. This will help prevent/minimize some of the challenges most patients experience.
The most concerning of symptoms was the neuropathy did not reduce or stabilize with the lower dose of Taxol in week 7. During the week after treatment I started experiencing a spread of the numbness to the pads of my fingers as well as pain in my arms and hands. One of the nights I also experienced pains in my legs and tingling/numbness in my feet over night. After discussion with my oncologist we decided to complete the 8th week of treatment, then assess the best course of action. So right now, I am watching and waiting to see what happens this week. So far I have only had numbness in my finger tips the first few days after treatment. Then today I have experienced an advancement of the neuropathy to my finger pads. I have not had any continuation of pain or numbness in my legs or feet. Right now, we are on a wait and see if I continue with Taxol and Herceptin for the remaining 4 weeks or however long I can go, or switch to Herceptin only.
I also managed to catch a cold this week. The morning after treatment I woke up with a scratchy throat and very stuffed nose. I was hopeful that I just needed water to lubricate my throat and blow my nose a lot because it was due to allergies. Not so. The runny nose and sore throat lingered for a few days and by the end of the week was on the downhill side. But it has been a wake-up call about how the build up of chemo is compromising my system. I made the very hard decision to not attend an event due to the numbers of people that would be attending. I am a people person, so that is hardest part of this experience.
But do not be sad for me, I am filling my time with reading, movies, cooking and exercising. I have lost 30 pounds since beginning of January. During chemo treatments so far, I have leveled off due to the drugs in my system, but I really feel good. Going to a mainly plant based diet made all the difference. And I have to say, I do not have cravings, I am fully satisfied after every meal. I do not have an urge to snack during the day unless my funky stomach comes back, and I need to make sure it has something in it. Thanks to acupuncture, I have not had a seriously nauseated stomach since week three. For those interested in learning more about the plant-based diet and why I chose to go this route search out the book, “China Study; edition two.”
Speaking of food my first week of the CSA Lancaster Farm Fresh delivery will be Tuesday. There will be way too much food for me, so look out for an invitation to a dinner at my house where we will have the pleasure of learning how to cook in a plant-based diet world by a local vegan/vegetarian chef. I am determined that my friends and family will not have to take this route to getting healthy and avoiding any form of cancer.
Woo Hoo! Half way done with the most difficult of the stages of treatment.
After the last post, I did experience a bad nausea day on Monday. It was also the day of the week with the barometric pressure going crazy. Clearly, I am very sensitive to changes in my environment now. Week 6 chemo day was again uneventful. Had acupuncture on Thursday. I personally swear by acupuncture. It is really working for me. If I keep a strict schedule my nausea seems to be minimal to nothing. But if I do not walk first thing in the morning, or eat at prescribed times of the day, or get to bed around 9 – 10pm, my body screams at me in not very nice ways. It is frustrating because I have always had a very active life that had me running everywhere and doing things at night. This is forcing me to take a step back and learn to say no to things. I guess not a bad thing, but very frustrating.
This week my oncologist also addressed my oncoming neuropathy by reducing the Taxol dosage by 10mg and extending the infusion time in the hopes that we can hold back the neuropathy in my fingers and it does not become permanent. I am trying to not borrow trouble, but I am also trying to come to grips mentally with the possibility that I may have trouble playing the violin and piano in the future.
This week also brought about a huge change. One of my walking buddies came by on Thursday morning and had to break the news that my hair looked like a bad comb over. It was time to decide how to deal with the emotional impact of losing my hair. Up until now, chemo days were just another appointment on the calendar. Since I have been feeling so well, I could forget about the cancer for huge portions of my week. But the loss of the hair is a constant reminder every time I look in the mirror. So, like most things I needed to act rather than let life take me. Two of my lions went with me to my hair dresser to record the event. I shaved it all off!
I was nervous about what my head shape would look like, and if I could handle the look. I decided I like it. It is freeing; great on warm days, and no more good and bad hair days. I have become the Warrior Jewish American Princess.