Medical Update
Brain Tumor Treatment, Chemotherapy, My Story January 26th, 2010
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I’ve now completed my second week of using VP-16. I’m now starting to feel the cumulative effects of this chemotherapy. It’s somewhat like temodar but for some reason the side effects are felt more consistently. With temodar I would feel nauseous in the morning but it would subside by about 8 AM. With VP 16, I’m beginning to feel nauseous most of the day. My routine has been the same as it was with temodar but I am folding in more zofran to address the nausea. I wake up just not feeling good but it goes on into the afternoon.
I’ve always stated that this blog is real meaning it’s not candy-coated. I do my best to share with you as honestly as I can - the good and the bad. The last two days have not been so good for me. I’ve been feeling sick, fatigued and a a bit down primarily because of my loss of function in my left arm. This morning in particular was a little bit of a breaking point for me. For the first time I was not able to reach my right under arm with my left hand to bathe. I wasn’t feeling sorry for myself. I know there is a lot more to come that will be even more difficult It was more about the physical limitations I have now and the dependency on others compared to how I used to be and it was so incredibly frustrating to me. I hit the shower wall a few times to be quite honest and because of my frame of mind started wondering what’s next. My left shoulder is just very weak and it can’t support the weight of my arm. The tendons from my scapula to my shoulder are separating and most of the pain is felt in the AM after sleeping overnight. I’ve been trying to use a towel lying on my left side to support my arm and shoulder arent pulling as much but it doesn’t seem to help much. The result is if I bend over during the day to pick something up I hear pops and cracks in my left shoulder and it further stretches out that tendon. I’m stooping as best I can but it’s just a problem I have to work as with the others.
If anyone has experience with shoulder injuries and support systems for sleeping at night I would greatly appreciate any input you have! I think I’ll have some good information from PT tomorrow afternoon.
As I well know, this type of thinking – getting caught up in the problem – accomplishes nothing but at the same time I think it’s important to walk through whatever you’re going to feel. The reality is the same. I’m only human and it is frustrating.
It took me a while to get back into today which is where I belong and what I preach all the time. This certainly addresses the future and anything that is to come. That’s all part of God’s plan. What I find difficult is when I’m going through something like this, I’m frustrated and it IS happening today. There’s no other way than prayer and turning it over and I’ve done that over the last three hours. Enough said
With regard to IV chemo, I will be at the infusion center tomorrow for avastin treatment. I’ve been doing this every other week for quite a long while. On February 1, I will have another MRI. At that point will see where we are and I know that we will be guided in the right correction.
Lastly, I have upgraded the blog’s core software to the latest version. What this means for everyone else as I will be able to build in new functionality that is really exciting. Already I have put in a mobile edition of the blog that you can access with an iPhone, Blackberry and most of the major smart phones. Basically it’s a stand down version of the blog that allows you to see recent posts, comments and allows you to respond to posts on the go. For me, upgrading the blog opens a lot of possibilities in terms of some projects I’d like to tackle when I’m not working. After all I I still have that brainy side that needs to be exercised
I will provide updates as usual. Friday is my last day of work.
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Hey Mark –
I had a shoulder injury last summer involving connective tissue. What I ended up with was a series of small, repetitive therapies, at low weight and high reps, with an elastic band. It was tedious
with reps at 100 or more, but it made all the difference getting my mobility back.
For sleeping, I was recommended to sleep on my back, not my side, and to not sleep *on* the injured shoulder. Part of the problem was the muscle tension that came with the pain — the body trying to protect the joint by clenching. So heat, cold and massage was part of it, too. Heat before exercising, to loosen up the area, cold after to prevent swelling. Massages once a week, then once a fortnight, then once a month.
I also used arnica and some homemade organic salves to keep the area supple, improve blood flow, and decrease bruising. (Shoulder lock-ups are endemic in the women in my family.)
I don’t know how those would work/interact with your regimen of meds.
Blessed be,
Barbara
Hey Mark – I know that this is very difficult, especially the diminished use of your left arm…just know that you and the family are constantly in our prayers. While you are only human and have EVERY right to not only feel this frustration but also express it outwardly, you should know how much inspiration you give all of us! keep living in today. Can’t wait to see you guys at the end of February.
All our love,
Shawn
Mark, I feel everything you are going thru. You and your family are always in my thoughts and prayers. This cancer is all around us. Just the other day I was at the grocery store shopping for a King Cake and I met this woman with a very rare brain tumor. We talked for 30 min. and I had her all signed up for our support group. We must live in today. With my husband Marc, I must keep him motivated with projects. He is by the way doing well as can be expected. Almost 1 year on Avastin. His lab counts did go down recently and we are awaiting a PET and MRI scan in March. Please know that your blog has helped me tremendously with information and keeping me in the faith. God does have a plan for us all.
Who dat goin win the Superbowl!!!!!
Stacey – Baton Rouge, LA
Thanks for all your help and comments. Barbara, I will definitely try out some of the techniques you have mentioned. I should have clarified that I’m not sleeping on my left side. Rather, I’m placing a pillow next to me on the left side in an attempt to support my left arm while sleeping. It seems to help. I’ve also seen some great braces I can use during the day to help support my arm.
Shawn and Stacy I really appreciate your comments. They are always uplifting. Thank you so much.
I’m really glad to hear that Marc is doing okay. It’s a tough fight as we well know that it’s battle worthy of pursuing. I already have a lot of projects lined up but I want to accomplish and I have a lot of time to spend with my family that are memories that can never be re-created. That is what is most important. And you are right – the woman you met in the store just underscores the fact that we are not alone and it’s an example of how you personally played a role in someone else’s life that will make a difference.
Super Bowl? It should be the San Diego Chargers. However, they blew it at home so given the two teams that are there my guess it’s the Colts but it should be close unless Peyton gets into a good rhythm. If he does, it might be over early!
Mark
Mark, I thought you would like this. Ha..
Pledge allegiance to The Saints, and to the great city of New Orleans; and to The Super Bowl, for which we will win; One city, below sea level, under God; with Mardi Gras & alcohol for all. AMEN!
Stacey – Baton Rouge, LA