end of January 2012

Okay, so all of this nitrogen mustard stuff has been ruminating in the back of my mind for a few weeks now.

Do you want to see the list of things that were caused by chemotherapy and radiation from when I was 7 and 8, specifically the nitrogen mustard?

Here goes. . .in no particular order:

* Shingles (Extensive case, leaving massive scars and no skin sensation across my left shoulder and neck. Because the virus was activated, I currently have to take Acyclovir day and night so I don't contract another case while my body is recovering from the transplant.)

* Tachycardia (Resting heart rate is about 100 beats per minute, which means my heart races constantly and is working harder than it should.)

* Stunted growth (Parents were on the taller side, one brother was over 6 feet, my sisters are in the 5'6"-5'8" range, and I'm stuck at 5'0".)

* Weak teeth (I could pull out all of my teeth on my bottom left jaw today. They move significantly from side to side and have roots that are smaller than baby teeth. I was told at age 7 that I'd lose all of my teeth by the time I was 25. I'm trying to hold on to them as long as possible.)

* No sweat glands or hair follicles under either arm (This, I actually count as a blessing. No wearing deodorant or shaving there for me!)

* Hypothyroidism (Thyroid was damaged and doesn't produce enough hormone, so I'm on a replacement thyroid hormone.)

* Mitral Valve Regurgitation (Heart was damaged, so it's having to work harder to overcome the leaking valve.)

* Gastro-Esophageal Reflux (The esophageal lining was weakened and is too thin, so I take medication day and night to prevent more erosion.)

* Sterility (MOPP leaves you sterile, so I was told from the time I was 7 that I couldn't have children. Then, all of my female organs failed when I was 34, so I had to have a complete abdominal hysterectomy, which cinched the fact.)

* Pulmonary Hypertension (My lungs are permanently scarred and have the capacity of an 81 year-old woman. No wonder I have such trouble breathing!)

* Aortic Valve Stenosis (This heart valve leaks a lot and is being closely monitored. I'll probably have to have open heart surgery to have it replaced in the next 2-3 years.)

* Severe Osteoporosis (This is why, when I tripped on the sidewalk a year ago, my forearm and wrist shattered into over 20 pieces. Now, I'm on a daily injected medication for two years to try and strengthen my bones as much as possible. Chemo robs bones of their calcium.)

* Severe Myopia (Near sightedness. Recently added to my list as a direct effect.)

Not to mention all of the scars covering my body. Shingles scars, scars on my neck and upper chest from ports and other blood catheters, two long scars on my abdomen from a laparotomy and splenectomy (no spleen) at 7 and hysterectomy more recently, ugly scars on my left forearm and hand from having a external fixator inserted from when it was broken, and a pair of dog-bite-looking scars on the top of each foot from two lymphangiograms when I was 7 (for diagnosis and treatment progress purposes). I tongue-in-cheek joke with Dale that he'll never have a problem identifying my body with all of its scars!

I know. I know. I know it could be much worse. I'm alive and can relatively do the things I want to do--as long as I carry that wretched oxygen with me. However, this list and my general weakness and fatigue and the fact that I'm still on oxygen after 5 months have just been weighing heavily on me. It feels like too much. I feel like giving up sometimes. What's the point if I have all of this to deal with? And who knows how much worse the effects from the latest rounds of chemo and radiation are going to be? I'm just sad and disheartened.