21. "Overdoing It" or too much activity is relative...

21. "Overdoing It" or too much activity is relative...

When my mom was first being treated for Primary Amyloidosis in 2003 the disease was extremely rare and not very well known. There were exactly three places you could be treated for it. One was Memorial Sloan Kettering in NYC. Thankfully, I lived in NYC at the time and when she came to be treated in one of their Clinical Trials she and my stepfather were able to stay with me for the 10 weeks she had to be in town. There was no known cure (and still isn't) but the treatment protocol was stem cell harvesting followed by high dose chemo and an  autologous stem cell transplant. The chemo and transplant were done in the hospital and my mom was in "reverse isolation" for three weeks, while her cells regenerated. 


When harvesting cells you must remain VERY still.

The process takes about two days. First, the chemo, then 24 hours later the introduction of the stem cells supported by blood transfusions. Day one came off fine. It was day two that left her feeling like death warmed over.  Day three, when Dr C walked in to check on her, he found her alert sitting up in bed beading a bracelet, from the bead caddy she had brought with her to the hospital. 

"What are you doing ?" He asked

"Beading", she said, a bit confused that it wasn't obvious 

"How are you doing that?" He asked truly puzzled that she wasn't laying prone and sickly.

"Well, no one told me I couldn't" she said simply and continued on with her work. 

To say I am from "hearty stock" is an understatement.  My entire family have always been incredibly active. My 91 year old Grandmother was interviewed a few years ago shoveling her walk in Wisconsin. I have been a fitness instructor averaging about 15 classes a week going on 17 years, so I think it can be said I know my body pretty well.

One of the first things listed on my Post-Op instructions, to start immediately, is to go for walks (mostly to help cycle the anesthesia out of your system).  While I have done that in the week after surgery, removing my drains has been like being set free.  I have been to the gym, to Palm Springs for the long weekend, with my brother and husband , and out to dinner with friends.  Within this time, I have also gotten deep into "The West Wing", started some books and have spent A LOT of time resting.

While I feel capable physically, I am acutely aware of my lack of upper body strength. How the mere act of opening the car door is a strain and I need someone to do it for me, or to very cautiously do it myself. This weekend when approached by a man asking for money,  I realized how very physically vulnerable I actually am. I was alone and thought nothing of walking from my hair appointment to the casino to meet Collin and my brother like I had always done. As he approached, I realized that while I had no money I wanted to give him, if he decided to assault me I didn't have the upper body strength to fight back. These are thoughts that have never crossed my mind, but this new awareness of my wounded state has heightened my attention to potential danger. 

Of course the weekend passes in a routine of  easygoing site seeing, eating, and laying about. Yet, I am warned by those concerned that "I am overdoing it" (which by contrast to my normal life I am no where near). However, two days later while back home, I am KNOCKED ON MY ASS  by a migraine that has less to do with "overdoing it" than my forgetting it occurs monthly  and according to the calendar, it is that time. It lasts 24 hours: splitting headache,  nausea, and a day lying with a ball on a pressure point until it finally releases.

The next day I am back. Feeling my way through the fuzziness of what was left of the migraine, checking in to see what I feel where my body is and what it feels like it can do today. Because everyone's body, everyone's healing is different. I decide to work on some simple core exercises, curving into a "hollow body hold" focusing on the connection, making certain my arms attempting to support me. 

Collin comes in and looks at me questioning. 

"No one said I couldn't " I say.

22. My "Franken-chest." Or… Dr D. does GOOD work.

22. My "Franken-chest." Or… Dr D. does GOOD work.

20.  Contemplating my mortality on the first anniversary of my Dad's death.

20. Contemplating my mortality on the first anniversary of my Dad's death.