Hello Everyone,
Michele again. I just got off the phone with Heather and she asked me to write an update. I know that we all want to hear from her directly. Heather says she will post on Monday.
Today was/is a good day. Heather's liver function counts continue to drop and she continues to lose fluid weight. To give you an idea of what can happen in terms of fluid retention in a situation like this - Heather's waist measurement was 44 inches yesterday. For those of you who know Heather - normally the owner of a svelte physique - this is rather shocking. Today her waist measurement was 41 inches (a good sign that her liver is starting to work again). Inside, her liver has swollen to twice its normal size and is being pressed upon by all of the fluid she is retaining. The short story - pain. To better manage the pain, she has switched off of morphine - which in Heathers words "sucked" and had no effect in easing the pain - to an even stronger drug called delada (phonetically spelled), which is working well so far and does not have any delusional side effects. (Today we had a few laughs going over the things she had said while under the influence of the first pain medication - none of which she remembers.)
Heather mentioned the meeting with the radio oncologist briefly in the last post. The summary of this meeting is that Heather will most likely start radiation 9-10 weeks from Day 1 (meaning sometime around March 20-27). A week prior to that she will have a CAT and perhaps PET scan. The radio oncologist want to make sure that she has flushed as many of the toxins from the chemo from her system as possible before starting. She will have at least 20 treatments, and perhaps more based on how these treatments work. When it comes to performing radiation, it seems that with a media-stinal mass as large as Heather's, that is so close to other organs/body parts, the radiation becomes as much an art as it is a science.
In closing for today, Heather will be in the hospital for another week. She has read all of your posts (a few times over) and as a result we talked a lot today about the amazing power of prayer and positive thinking. Heather sends her deepest thanks!
Michele
P.S. (And only in this crazy situation is this a post-script... Heather still has the pneumonia that brought her back into the hospital in the first place. The doctors and nurses say it is under control, her fevers are gone, the white counts are up, and the medication will wipe what is left of the pneumonia out. Another one bites the dust...)
A journal to keep everyone up to date with my Primary Refractory Hodgkin’s, radiation myelitis, and the little Z’s.
Followers
A QUICK TIMELINE
2006
January
Conceived our third child
Began to display symptoms of Hodgkin's - night sweats, itching, swelling, shortness of breath
March
Diagnosed with Hodgkin's and began 6 cycles of ABVD
Pregnant with cancer - what luck
August
Delivered Alex on August 28
PET Scan on August 31 - results that the ABVD did not reduce my tumor
re-diagnosed with Primary Refractory Hodgkin's
September
Consultation with NIH and Hopkins - recommended that I have 2 cycles of ICE then Stem Cell Transplant (SCT).
October
PET Scan results that I could get the SCT
November
Had another cycle of ICE while waiting for transplant (3rd) Began SCT process
December
Final cycle (4th) of ICE
Unable to mobilize stem cells and waiting for bone marrow harvest
2007
January
Harvest bone marrow from bones under twilight meds Admitted into hospital for SCT; new birthday Jan. 16
February
Released from hospital - 2 days later back with VOD
Final release on Feb. 14 (happy v-day)
April - May
Radiation treatments
June
PET scan to see if treatment & SCT worked - it did and I am cancer free!
July
Hospitalized for pneumonia and missed Charlotte Marie's 4th bday.
On oxygen support
August
Alex's first birthday - can you believe it!
September
Returned to work part time
Lee started kindergarten
October
Diagnosed with BOOP - out of work again
Back on oxygen support and steroids
Resigned from job to focus on health
2008
Jan.
1 year anniversary of SCT - still cancer free
April
Diagnosed with radiation myelitis
July/August
Lost moblity in lower extremities - wheelchair bound.
Using Avastin to try to stop progression of myelitis to my arms and hands
January
Conceived our third child
Began to display symptoms of Hodgkin's - night sweats, itching, swelling, shortness of breath
March
Diagnosed with Hodgkin's and began 6 cycles of ABVD
Pregnant with cancer - what luck
August
Delivered Alex on August 28
PET Scan on August 31 - results that the ABVD did not reduce my tumor
re-diagnosed with Primary Refractory Hodgkin's
September
Consultation with NIH and Hopkins - recommended that I have 2 cycles of ICE then Stem Cell Transplant (SCT).
October
PET Scan results that I could get the SCT
November
Had another cycle of ICE while waiting for transplant (3rd) Began SCT process
December
Final cycle (4th) of ICE
Unable to mobilize stem cells and waiting for bone marrow harvest
2007
January
Harvest bone marrow from bones under twilight meds Admitted into hospital for SCT; new birthday Jan. 16
February
Released from hospital - 2 days later back with VOD
Final release on Feb. 14 (happy v-day)
April - May
Radiation treatments
June
PET scan to see if treatment & SCT worked - it did and I am cancer free!
July
Hospitalized for pneumonia and missed Charlotte Marie's 4th bday.
On oxygen support
August
Alex's first birthday - can you believe it!
September
Returned to work part time
Lee started kindergarten
October
Diagnosed with BOOP - out of work again
Back on oxygen support and steroids
Resigned from job to focus on health
2008
Jan.
1 year anniversary of SCT - still cancer free
April
Diagnosed with radiation myelitis
July/August
Lost moblity in lower extremities - wheelchair bound.
Using Avastin to try to stop progression of myelitis to my arms and hands
Good Links
Maple
12 comments:
YES! Joyce
THANK YOU, THANK YOU, MICHELE!
SO GRATEFUL FOR YOUR UP-TO-THE MINUTE UPDATES! HOPING FOR MORE POSITIVE NEWS!
PERHAPS THE FACT THAT THE FAMILY MEMBERS REPRESENT SO MANY DIFFERENT RELIGIONS MEANS THAT ALL THE "GODS" ARE LOOKING DOWN ON HEATHER!?
MUCH LOVE TO YOU ALL, EDNA
Yay! Very encouraging news! I'm glad to hear that things are improving and I only hope that the pain stops very, very soon. If you're up for some company, I'd love to come to visit when I return from Portland. Paul, Jake, Noah, and I pray for you every day. Love and miss you!
Love, Nikki
Once again, thank you, dear Michele, for keeping all of us up to snuff on Heather's progress, indeed, the progress Heather had today was a positive one for a change.
Finally, things are turning around and all I can say is, IT'S ABOUT TIME, let's hope she can keep the momentum going ... with all the wonderful prayers, and thoughts from friends and family, how can she miss.
The day was even a little better for me because when the phone rang earlier today, the voice on the other end was Heather's ... music to these "old" ears, I can tell you. I had not spoken to her since I was last with her in IPOP. So, this was great being able to have a little, "schmooze!, as we in the Zeitlin clan refer to as " a good gab." And Heather will tell you, I like to schmooze.
Anyway, thanks all, for your wonderful posts, I know that when Heather reads them, it has to bring a smile to her face to know all of you are routing for her ... with a team like that she can hit this thing right out of the park!
Sister,
I love you a lot and praying for you daily. You truly are absolutely amazing through all this, and it is hard to imagine anyone being stronger than you have. I truly believe you are inspiration to your friends, and probably the strangers that stop by. I can't wait for the day we can have a good 'ole 'silver spring zeitlin's' get together with the seven of us, like were supposed to have. You know Nicole and I will do anything we can to help you guys out! I am very glad to hear your feeling a little bit better.
I am honored and proud to call you my sister! Take care of yourself and one of these days when the whole fam is absolutely healthy, maybe we can actually get up and see you (or I'd be much happier if you beat us and got home :) )
Michelle - You are also very amazing through all of this - thanks for keeping us all in the loop, taking great care of your sister, and helping my brother (my best-friend) through it on the 'day-to-day' family side.
Michele & Heather, hey cousins! You are so right about the power of prayer and positive thinking. I have called on many of my friends to be actively praying for Heather, especially in the last couple of days. I have received dozens of emails saying how you are in their prayers every day ... you are WELL LOVED on the West Coast. I found this quote that I wrote to them in an email, but I thought I would share it with you too: "When it seems hardest to pray, pray hardest." (Hugh Black). I am praying my hardest for you! Love, Jessica
Heather,
I am a long time friend of Louise's. We have run many miles together. Just wanted to let you know that you have been in my prayers ever since Louise told me about your illness. I have faith that the Lord can and will perform healing in your case. Hang in there and keep tough. By the way your children are absolutely beautiful. God Bless, Delma
Dear Heather:
Your deterimination and strength are showing in this more positive development I pray for you each night. I know all of us are willing you our strength so you can continue the fight.
God bless and heal you.
Irene Wolfe
Dear Heather,
You are, without a doubt, the strongest person we have ever known. You are amazing! We are so happy to read that things are turning around. You are in our prayers every night - we all love you!
Love, Tommy, Dina, Kendal and Jackson
P.S. Thanks Michele for the updates - Tommy and I were laughing about the "comments" made while on the pain meds - does Heather really not remember? :-) Good to know that she's got some laughs while in the hospital!
Hi Heather!
Keep kicking ass, sister! We're rooting for you over here in Mother Russia! Michele keeps me well posted on your progress, and I'm keeping you in my thoughts and contemplations (okay, I'm a lousy agnostic, prayers too ;-).
Looking forward to reading more!
Don
hi heather. just wanted you to know that we have been following your journal ,and have prayed, and continue to do so. hang in ther . barb and dave newhouse
Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!
Post a Comment