Another week down and again the infusion day was uneventful. The fun happens in the days ahead. But surprise, as of today (Friday) this week has been one of the easiest. I guess I should not count my chickens before they hatch. I still have the weekend days to get through. But so far this week the nausea was been almost nonexistent. I am still keeping to a strict schedule and drinking lots of fluid and walking every day which is supposed to help with all symptoms. I suspect the weekly acupuncture is making a huge difference.
The neuropathy I experienced last week also went down to a dull undertone that just felt like it was going to rear its head if something changed. One of the things I did was read up on the Dana Farber Cancer Center site. The articles indicated that vitamins B6 & B12 could potentially help to alleviate the risk, although not scientifically conclusive. While reading I also learned that those that do a plant based diet often can have trouble getting enough B12. This week after clearing with my oncologist, I added to my vitamin intake with B6 & B12. Between the acupuncture and vitamins, I might have changed the advancing neuropathy. Time will tell.
My hair is still shedding and getting really thin. So far people are telling me I do not have bald patches, but I am not sure if they are just trying to be nice. I cannot see the back of my head. I am holding on so far, but if bald patches start appearing, I will probably have my head shaved. I have found some wonderful hats, and I have the retro scarves from my great aunt. As my cousin reminded me, wearing the scarves will be like getting a hug from my aunt.
This weekend I get to hang out with some wonderful friends form High School days. I am really looking forward to catching up with everyone. Here is hoping that the nausea does not rear its ugly head, so I can enjoy our time together. One more week and I am half way done. Staying focus and marching forward.
This week I met with the Oncologist prior to the infusion. It was a good appointment that reinforced I am with the right doctor. Some of the concerning symptoms that I have had he was able to explain what was happening and calm any fear I was starting to have. For example: I was having intermittent pain on the left side of my chest along with lower right jaw pain. Since Herceptin can affect the heart and women can present with heart problems with pain in their jaws, I was concerned. He was able to explain that because I was having this pain many hours after exercising it was presenting as the normal aches and pains that Taxol can create. So, heart problem not likely. Whew! The doctor also told me that changes in the barometric pressure is also felt by Chemo patients more intensely, so that would explain why week three was more difficult and more intense.
Again, the infusion was uneventful. But symptoms are building. My hair is shedding. Those that look at me do not see it immediately, but I know it is happening because there is hair all over my house. To help try to not loose it all, I am caring for it very gently. I might get lucky and only thin, but I have 8 weeks to go, so I am not holding out too much hope. This will likely be the most emotionally impactful, because I will be reminded what is happening in my life every time I look in the mirror. As of right now, I can go hours or days and be able to just carry on and treat the doctor appointments as just meetings on the schedule of my life.
The other concerning symptom I have developed over the last two weeks is the start of neuropathy in my hands. This is when your hands get weak, you get the dropsies and can also cause numbness in the finger tips. It can be temporary or permanent it just depends on the patient. I started getting shots of numbness in my fingertips. I discussed this with my oncologist. He has asked me to record what I feel, when I feel it, and for how long. This will give him the information to manage the likelihood it is advancing to far for me to recover from neuropathy. Permanent neuropathy would change my life completely, I would no longer be able to play the violin, which has become a big part of my social life and a major stress reliever.
I again went to acupuncture this week. I mentioned the symptoms I am having including the start of nephropathy. It was reinforced I am receptive. The treatment retarded the symptoms of neuropathy. I am still feeling hand weakness and nerve shots in my hands if I try to twist off a top on a jar, but I have not had any more numbness in my fingertips. I cannot recommend acupuncture more for what ails you. It does not work for everyone, but when it works, what a difference it makes.
I also had an initial consult with the Radiologist Oncologist I will be treated by after the 12 weeks of chemo. All I can say is Philly is really a small town. I found out that he is a graduate of my high school four years earlier than I. I really liked him, he was very informative, and listened and heard me. It confirmed I made the right decision with my care.
This week my cousin came down from Boston for a visit. It was nice to see her and be able to visit and take time to just talk. I got her out on my walks and she was able to meet some of you too. The pattern is still about a day and a half starting Thursdays that I am most affected by nausea. I am managing with food, warm water, sleep and getting out walking. But my system is more sensitive, and I really must eat and sleep on schedule, or I pay the next day or two. I am still doing well over all, and able and needing movement to keep back the fatigue.
It is finally turning to spring. Let’s hope we have a spring rather than jump immediately to summer. I would like to inspire everyone to get out and move; it could be bike riding, walking, hiking in the mountains, or getting to the gym. If you would like to join me walking, text, or email me to make it happen. I will probably start attending Hathe Yoga classes at the YMCA in the coming weeks, you are welcome to join me. Once I am past these 12 weeks, and recovering from the chemo, I will be trying to get up into the mountains to hike.
Another week down and almost 1/3 of the way done. This was a week of learning how to manage symptoms. I learned:
1. Schedule is important. If I try to stay out or up later or push myself I will pay for it the next day. I do not mean by just being tired. The nausea is greater, the fatigue is worse, and I tend toward lightheadedness and feeling like I will faint.
2. Each week is something new. I thought I was getting into a pattern, but then this week, the tougher day was not Thursday be rather Friday and Saturday morning.
3. The Chemo exploits your physical weak points. Now I understand why all medical professionals were saying I would do well. Because I am healthy, there is not much for the chemo to exploit. But what I have experienced to date: bloody nose, dry cracked skin on my thumbs, and the listed symptom of aches and twinges that move throughout my body. I have also started to shed my hair; not in clumps but just strands. My hair may just thin rather than loose it all, but time will tell.
4. Fatigue really is fought off by exercise. The days I walk 3-4 miles a day I feel good and can function. The times I have sat on the couch or lazed around I feel horrible and have more trouble with nausea. Back to point one, sticking to a schedule is critical.
I really am doing ok, and able to function and take care of life for myself. In fact, it is better when I do because I am moving and active. The treatments have been uneventful and will now only be about 2.5 hours in length.
There are some things I will need help with soon. I will let you know when, but in May I am going to need some men with upper body strength is help move boxes and furniture. Stay tuned for the sign up genius in May.
I need people to walk with. I can push myself further when I am talking with someone. When I am alone I do not push through the wall, and it is harder to fight the fatigue. So, when you are available, text or call me, and we can make it happen rain or shine.
Yeah! Another week down, 10 to go. Again, the treatment day was uneventful. A lion joined me for the day, we hung out and caught up on each other’s lives. I love that I get to use these treatment days to spend with friends and make the most of our time together. I was also surrounded by my PEO sisters and their loving support. Thanks to them I have a lovely Pashmina and warm fuzzy socks to brighten up the infusion room.
This week was much like the first week, but the infusion time was reduced by 30 minutes. I was feeling ok when I got home and had lunch. Unfortunately, I learned a valuable lesson, do not sit on the couch after having lunch on infusion day. I started to feel overwhelming fatigue. By 3pm I got out and went for a good long walk and felt tremendously better. Like the previous week, I only slept about 4 hours that night, and woke up on Wednesday feeling good. I am learning that is the steroids talking.
Wednesday I went to my first ever acupuncture appointment. I am beginning to believe in mysticism. If you recall, I was diagnosed on my mom’s birthday, I was able to attend Hamilton a year early in January on my dad’s birthday. Well when I walked into the treatment room at the acupuncturist the only thing hanging on the wall was a sign that said “Live, Laugh, Love”. This is the phrase that is on my dad’s tomb stone. I still get chills thinking about it.
The acupuncture was amazing. I highly recommend it for what ails you. I received the detox treatment which was needles in strategic points all over my body. I then lay there for about 45 minutes. Through out that time, I had my eyes closed and tried to empty my mind and just feel. What I felt was points of pain intermittently in different parts of my body and then tingling sensations, culminating in an overall tingling sensation over my whole body. Afterwards I was very relaxed and felt like I was floating the rest of the day. Apparently, I am very receptive. The good feeling carried over to Thursday as well.
Thursdays are turning into my challenging days. This is when I get the funky stomach and if I do not pay attention to ingesting food and water throughout the day I get lightheaded and feel like I will faint. This week because I planned and made myself drink and eat at 2 – 3-hour intervals I was able to manage it and have a very fun productive day. I friend invited me to attend a concert at the Kimmel Center to see the Danish Quartet. It was an amazing concert. I am so grateful I was asked and able to attend.
Stay tuned for the next Sign Up Genius. The May treatment schedule was given to me, and I would be grateful for those that want to spend treatment days with me.