- 6 Doxil Infusions
- 23 Velcade Infusions
- 76 25mg doses of Revlimid
- 30 20mg doses of Dexamethasone
- 16 10mg does of Dexammethasone
I don't have any earth shattering wisdom quite yet, but jotted below are some quick thoughts on what I have found helpful over the last four months:
- Lean on the MM blog-o-sphere: Connect with folks who are blogging about their MM experience. These people have been an amazing network of support for us and I hope one day to meet them all in person.
- Add to the Conversation: Start blogging your journey or that of your loved one who has MM. This has helped me connect with myself, family and friends all awhile leaving a trail of information for others to be enlightened, inspired and hopefully converted to Michigan Football fans. And if you need help setting up a blog, just send me a comment.
- Side Effects: Know what they are, but understand that they will not last forever. A couple of my side effects took me to the ER/Urgent Care 3 times in my first two cycles! Four cycles later there has been no signs of these issues.
- Worse may be better: The worse I have felt, the better response my cancer was having to the drugs. Try to find the good in the worst of circumstances.....or just laugh.
- Partner with your Doctor: We are all in this together, especially the patient and the medical staff. I think having a team environment in this journey is critical. I wish this disease had a start and finish date, but we're not there yet. Therefore, we all need to push forward together.
Four months from now I hope to have dominated my first stem cell transplant with no signs of M-protein. I also hope to have been able to sit back and relax for the first time in my entire life. We'll see....
8 comments:
Phil, having had a stemcell transplant I can relate to 90% of that (the drugs vary a little but the goal is the same) UK or USA it's all the same. The one I agree with most is BOND WITH YOUR MEDICS and IF ALL OTHER THINGS FAIL, LAUGH....
It would appear that you have the same fantastic support from Cassie as I do from Averil, aren't they wonderful.
That "worse may be better" thing reminded me so much of pregnancy, and my OB reminding me over and over that morning sickness was really a positive thing. It's obvious when you sit down and think about it that chemo is going to mess you up because it's *really* messing up your misbehavin' cells. (Of couse, your positive attitude is about 1000 times better than mine was.)
I had done yoga before and thought it was okay, but I think I am benefiting more from it this time. Perhaps because I haven't been as active I don't find some of the moves so easy and therefore consider it more challenging. Even the armchair yoga is good, this focuses more on breathing and relaxation. I had very few physical side affects from my treatment (apart from the bunged upness), but unfortunately the steriods sent me crazy. Now they are out of my system I feel so much better and do find the yoga assists in getting back to 'normal' and feeling like I'm in control of my body again in a way that cycling, walking don't. Wow, that's a bit deep for me. I tried tai chi too but its too quick for me! I have the co-ordination of a monkey on crack cocaine in relation to anything like that.
While your stem cells are busy repopulating you could be knitting a little something for the new arrival.
Paula
Phil, I can't begin to tell you how much better your blog and others have made me feel less alone in this battle. Our treatment paths have almost followed the same timeline. Although, I have only just started the Revlimid and have only 3 compared to your 76. Fortunately for me, there have been few if any side effects from the chemo. The slight intermittent numbness and tingling in my left fingers is being chalked up more to the neck surgery than the chemo.
Today the Jersey shore is experiencing a rare blizzard. We have already had about 14 inches of snow, which is unheard of for us, and it is still coming down. For me that means the start of cabin fever again. Especially with being on the Dex which makes me pace the floor. On the other hand, my 9 year old is having a blast sliding down the mountains of snow that the plows have left. Oh, to be a kid again. Next year, I want to be the one on the sled sliding down the mountain.
Jodi
Well said Phil, I agree with all of that.
The creation of a team is a must.
I would add create a knowledge base for myeloma medical matters and a knowledge base on how to fight and live with myeloma. The latter comes from our myeloma friends.
Sid
Great really worthwhile comments in this post - all very wise and helpful - Our very best wishes come to you across the pond.
dang Phil. I find myself talking about you to friends, citing things you say, and just overall gleaning hope and meaning all the time from your outlook and the way you express things. You almost make me glad to be in a the same club. ALMOST. ha ha.
KT
Keep it up, I really appreciate your outlook. Best of luck to you.
Post a Comment