Wednesday, February 9, 2011


Wednesdays used to be my high energy days but since being on this new chemo schedule and less steroids it has become a more challenging one. It's just my stomach and I guess it's not all bad because I'm still carrying around more weight than I would like.

I've been having some issues with my feet. Frequently I get a sharp pain in the ball of my foot that makes it hard to walk. This is not the way the neuropathy was described to me but I'm wondering if this is the way it manifests in me. I also get pain in my big toes. At first I thought it was an ingrown nail but it comes and goes and can be so painful even having that toe rub up against a bed sheet can be agony. I take allopurinol to combat high uric acid which can cause gout but I have to be careful how much of that I take because of my kidneys. I see Dr. Gregory next week so I'm going to run all this by her.

Yesterday I got an email regarding a memorial service for someone I know who has been battling cancer. She had a bone marrow transplant but struggled afterwards and obviously didn't make it. So much of this is luck. Certainly bad luck in getting ill but I know another amyloidosis patient who had a bone marrow transplant and went into remission, so some good luck as well. I survived my bone marrow transplant (good luck) but it didn't last and I continue to manage the illness. We all want answers. We all want it to make sense but it doesn't. Why does one treatment work well for one person, somewhat well for another and not all for others? Are some of us more blessed than others? I don't believe that. Like I said I think a lot of it is luck. I could be wrong but it works for me. In the meantime my heart breaks for her family who must find a way to go on without her.

Monday, February 7, 2011


The reentry into Velcade after a month off has proven to be more challenging than I thought. The first week I caught a stomach bug from Fox and had to postpone my chemo for a day. The rest of the week and weekend I didn't feel great but was unsure if it was the bug or the velcade. The second week was not as bad stomach wise but it's clear to me that some of the side effects I was attributing to the steroids were actually from the velcade.

My creatinine has been inching up and last week was at 3.55. That can happen when you are fighting an infection or virus but if it's up again this week I'm going to contact Dr. Leung and see if he wants me to go back up on the steroids. Right now I take 2 on Tuesday and 2 on Friday. I feel better on the lower steroids but I have to maintain my kidney function as well.

The new Cancer Center at RUSH is beautiful and running fairly smoothly. The check-in, check-out process still needs some tweaking in my opinion but everything else is smooth sailing. There are many new faces and thankfully all the old ones as well.

Because of the new procedures at the Cancer Center I haven't scheduled anything with Dr. Gautier (therapist) since I returned from Mayo but I'm feeling good about things overall. I'm still having billing issues on that end and it's frustrating because all someone has to do is change a code. Unfortunately I am not the person that can do that even though they keep calling me.