Saturday, July 26, 2008

Day +88

Day +88

Steroids are deadly. They can make you soar to unbelievable heights or dive into a dismal abyss. Because of Erica’s mouth sores that surface and play havoc with her whenever she attempts to eat plus other evidence such as a body rash, her doctors think its chronic GVHD. Hoping to eliminate or at least control the mouth sores to a certain degree, she was put onto prednisone steroids.

At the beginning, she was on a low doze, then they upped it to 100mg per day. For the past week, she has been feeling pretty lousy, being constantly fatigued, either sleeping constantly or not sleeping through the night at all. Not to mention that it’s playing havoc with her emotions to the extreme. She is irritable, forgetful and generally sad. However being the driving person that she is, she still tries to maintain somewhat of a schedule to keep her sanity.

Thank goodness Jonathan was here for a couple of days to balance things a bit. Gioia arrived from Switzerland via London last night and the girls, with Katie are off on a one day jaunt today to Carmel. Erica is so looking forward to getting away, albeit for only one night. She is sure antsy but you can’t really blame this foot-loose gal as she has been cooped up for the last 6 months.

However, the light is shining bright at the end of the tunnel. The 100-day mark is looming up ahead on 8/8/08, very auspicious in the Chinese calendar. 8 is always a very lucky number (as is today being Day +88 post transplant) and, for Erica, that date begins another chapter in her ongoing saga of her illness. All things considered, she is recuperating extremely well and despite all the discomforts her mouth sores bring, overall she has weathered the transplant very well.

Monday she will undergo her first bone marrow biopsy since the transplant and we will know for sure where exactly she stands. This is such a terribly painful procedure for any patient to have to endure without conscious sedation. Then on Friday, she will have her first clinic visit with her BMT doctor to find out the result of the biopsy as well as to access her future treatment.

Meantime, we have to congratulate her for being so patient, so enduring and so strong despite it all. We truly have to admire her spirit and courage. The past 2 ½ years have surely not been easy for her. She has come a long way since her first diagnosis.

Love you tons, sweetheart.

Mama-san

8 comments:

Abby Wood said...

Hey E and "Mama-san"!

Boo steroids, but yay almost free! Um, that's pretty much it from here, except to say that there's nowhere I'd rather be right now than at Carmel with you guys!

Mwah!
Ab

Georg, Stephanie & Liam said...

Carmel is a perfect place to be right now since we are baking in the valley sun! We hate steriods too,they can be your best friend and worst enemy at the same time. My brother in-law had his BMT a few years ago, and is still on them to this day. He developed diabetes just recently because of the drugs. Keep in good spirits and know you have hug family in blogville cheering you on!

Anonymous said...

Thinking of you constantly and sending prayers your way each day, Miss E. I miss you here in The Treehouse! Can you believe that same darn squirrel keeps trying to break into the kitchen again this summer?!?! He even ate a cake I had baked for a gathering through saran wrap! The nerve. ;-)

Love,
Addie

Sara said...

I had my day count wrong! Thought the mark was yesterday... well I'll keep checking your blog for news, so happy Gioia is there with you! You ladies have as much fun as possible, sure Gioia will see to that.

pfoster said...

Hi.
I found your blog through your You Tube video. I'm a writer for the National Marrow Donor Program. You might want to subscribe to the ACOR list, BMT Talk. The archives have information about pain control during marrow biopsies. Many patients and caregivers insist on it. It might be something you'd want to explore further with your doctors. Wishing you healing thoughts.

- Peter

http://www.lsoft.com/scripts/wl.exe?SL1=BMT-TALK&H=LISTSERV.ACOR.ORG

John said...

congratulations erica. sending you positive thoughts on your bmb day.

Yardley said...

Dear Judy,

I can't help but tearing up reading your write-up...so much love for you both...

See you soon.......

Yardley

Anonymous said...

Hi again Erica!
Glad to hear you are doing well (minus the steroids). They do suck though! Bleh, my face got so fat on them it was ridiculous. Eventually you wont have to take them though. If they get too uncomfortable to take, ask you doctor about Zenapex (sp?) which is another immune suppressor without the steroid side effects. Also avoid the sun!!! Ahh! sun makes gvhd soooo much worse. Check out the "stealth jacket" from Sungrubbies.com. Its SPF 50 and actually very stylish. I just got it myself.
Take care!
Natasha from Louisville, KY
natashacollins@gmail.com