Thursday, August 20, 2009

Nothing new

I don't really have anything new to report, but I didn't want to let a week go by on the blog without a post. I get anxious when my friends in the blogosphere are quiet for too long and didn't want anyone to worry because I did the same.

The skin GvHD persists and I have to take benadryl at least three days a week as a result of flares. I still have it much better than others who suffer from the same thing, so no whining here. The stinging sensation has been a little worse lately and comes on without warning now. If it's hot or really sunny and I'm outside for more than five seconds, I can anticipate something happening, but it's starting to happen more and more when I'm in the house being active. Last week I had an attack while vacuuming and ended up dropping the thermostat to 70 in an attempt to cool off quickly. Sometimes it happens in the shower if the water is too hot, which is not very hot at all. It's evidence that the new immune system is on patrol and doing what it's programmed to do and I'm hopeful that if there are any hidden pockets of leukemia or clone cells waiting for an opening to mutate, my donor's system knows what to do.

I'll confess to being a non-compliant patient last week and since it's the first time I've done something that I shouldn't have, I'm feeling very sheepish. You transplant veterans can probably relate to what I'm about to confess and everyone else is probably going to think it's just funny. I colored my hair.

Because of the conditioning regimen I had with this last transplant, my hair still hasn't fully grown in. My doctor swears that it will and that I need to be patient. People, it's been eleven months. With the first transplant, I had a full head of hair by the six month mark. What did manage to grow back this time around was a 60/40 mix of gray and brown. Every time I looked in the mirror, I could see my dad's hair, curls and all. I felt like this one act of rebellion would make me feel more normal even though I could hear my transplant doctor asking me why I would do it.

After transplant, the doctors like for you to wait at least a year before you do something so vain as adding color. Your skin tends to be very sensitive to chemicals and if you have GvHD, the dye tends to cause flares. So, I did it and I do feel more normal because of it. Of course, if you saw me in public, you wouldn't know since I still have to wear a baseball cap. I don't mind being marginally bald and would rather go out in public without a hat or scarf, but people tend to stare and it gets tiresome after a while.

Chris and I are really looking forward to having our first house guest next week and I'm doing my best to stay out of trouble. Things will probably be quiet on the blog front, so please don't worry if I don't post for the next few days.


Susan C said...

How fun to be entertaining in your new home!

And how good it feels for me to type those words, remembering all the challenges that have led up to this moment.

Ann said...

Thanks, Susan. Hugs. :)

Ronni Gordon said...

I can relate to the hair thing. Each time it comes back in, I hold off coloring for a while and then I give in. I'm glad you got it colored. Look good, feel good. My hair is coming in really fuzzy and thin so you can see the scalp. My "normal" hair is really thick. I'm a little concerned but I guess I just have to be patient.

Ann said...

Ronni, do you think the hair thing has to do with all of the multiple chemos, etc? What you described is what I'm also dealing with. So frustrating.

Anonymous said...

Hi sweet girl-

Oh I have been naughty too and waxed my face when on immunosuppressants and prednisone. Not smart but the creams were no longer doing anything!
My hair really did not start growing again till about 18 months and it is still slow. The tac made my hair super thin and a side effect of it is baldness.
Big hugs to you super star!

Ronni Gordon said...

Hi Ann,

Maybe it does have to do with the multiple chemos. I do remember going through the fuzzy duckling stage before, and then it got really curly and thick. I just don't remember it lasting so long. Oh well at least it's comfortable in the heat.

Nancy said...

Hey Ann... enjoy entertaining. It should be a blast and bring you even closer to normalcy.

Yes, my doc also told me not to color my hair. So when I hit three years post-transplant and asked him again, he said it's no problem (as if it were fine the entire three years, which we know it wasn't)

Enjoy the new color and entertaining. Happy Happy Days!!!!!

Thank you for the birthday card. I just love it! : ) n