Archive for October, 2016

A long overdue update

First off, I apologize for not updating this blog in over a year. I’ve either not felt up to it, or didn’t even know where to begin. So much has happened since I was in the hospital for my transplant.

 

The transplant was the worst experience of my life. I was bombarded by twenty some doses of chemo, given my donor cells, then continued the downward spiral. The little strength I had dwindled away, the chemo destroyed my mouth to the point where I couldn’t eat and needed a feeding tube shoved up my nose, and I was in a state of semi-conciousness for most of the 3 weeks I was in the hospital. I lost my hair for the third time, lost control of bodily functions, and was out of my mind most days.

 

I was not myself for some time after the transplant. I couldn’t do anything for myself and felt a level of fatigue I didn’t know was possible. Much of the hospital stay and the first couple of months after the transplant is a complete blur for me. I relapsed within 90 days of the transplant, and had to get more chemo. Thankfully I have been cancer free since November 2015.

 

Here is a list of most of the problems that I’ve had to deal with, from head to toe:

Hair: has only grown about 1-2 inches in the last year, is very thin & my scalp shows through

Eyes: no longer produce tears, lids no longer produce oil (didn’t know about lids producing oil previously). Need speciality sclera lenses (can’t afford), should be using autogulous serum eye drops (can’t afford), should be using Restasis (can’t afford). Have tried several types of drops and gels, had punctal plugs installed. Need drops constantly. Vision is always cloudy/foggy, and eyes hurt all the time. Had eye surgery due to bleeding in right eye, now have cataracts in both eyes. Will need surgery to remove cataracts when they get worse.

Ears: always ring, can’t tolerate loud noise

Nose: always runny

Mouth/Throat: very dry, must eat soft wet foods. Have trouble swallowing, often choke on food

Teeth: total mess due to dry mouth and lack of ability to have dental work done while going through chemo. Cavaties have fallen out, teeth have broken, crowns & root canals have broken

Stomach: acid reflux is worse than it was prior to cancer. Can’t eat or drink things that I was able to before.

Intestines: had Graft Vs Host Disease in lower instestine, which went away after several months of steroids. Caused a lot of pain in the lower abdomen.

Lungs: Have had a cough since January 2016. Coughed a hole in my lung in February, had a chest tube placed in my right side. Continue to have pain in right side where scar is, and the area under my breast. Have had pneumonia about 3 times so far this year. Often short of breath, lung capacity has greatly dimished.

Tailbone: fell a few weeks ago & hurt my tailbone (knees gave out). Have had lower back pain since.

Arms: very week, range of motion is very small. Shoulder pain prevents me from reaching beside or behind me.

Legs: very weak, hard to walk. Can’t put any weight on knees, they give out. Can’t squat, crouch, or get to the floor level without bending at the back/hip.

Feet: always sore, can’t move toes very well. Swell very easily & swelling goes up to the knees, sometimes higher.

Hands: always sore, hurts to do anything with my hands.

Skin: extremely dry, peeled head to toe for months after transplant. Don’t seem to be producing much natural oil (don’t sweat, hair never gets oily)

Infections: I’ve had a blood infection, bladder infection, and Urinary Tract Infection (UTI).

 

Beyond that, I am now being treated for rheumatoid arthritis and osteoporosis. Ironically, treatment for the arthritis is a chemo pill. I haven’t driven since February 2015, and until I can see better I won’t be able to. I am also menopausal…at age 43.

It’s depressing enough that I look and feel old, but I can’t even wear makeup due to the constant drops I have to dump into my eyes. The whole “look good feel better” slogan goes out the window for me. One of the hardest things about this entire experience has been to say goodbye to the person that I have been my whole life. I’m simply not ready to do that yet, and I struggle every day with looking in the mirror. This sounds vain, but it’s not. I sort of feel like I am trapped in someone else’s body, one that feels and looks much worse than mine.

So there you have it…the last year or so in a nutshell. I will try my best to update my blog more often going forward.

A huge shout out to my friends and family in PA – I miss all of you & can’t wait until I can visit again! Thanks for all you’ve done for me :)