Jill's Journey

[mausmish]

Hope everything goes great for you!

[Julianna]

Thinking of you Jill! Hope all is still going ok... whatever that means for you. I wish you the best.

Jules

[Jill2008]

I'm sorry that I have not been able to post updates daily. I experienced some nausea and hand tremors that made it difficult for me to type. I finished off my 16 doses of Busulfan on Friday and one dose of Cytoxin yesterday. I struggled most of the day with nausea, vomiting, headache and a gereral yuk feeling even though I was given medications to help minimize the side effects. Can't wait to get today's dose over with, even though the most challenging days are yet to come. Tomorrow will be a day of rest and then Tuesday will be transplant day...my rebirthday!

[Jill2008]

Hello all! This is Amber, Jill's oldest daughter and I will be doing the posting for my Mom for awhile. Today was Transplant day and she is doing good, just a little drowsy. Her re-birth time was at 12:08 pm and the process took about a half an hour. She is an amazingly strong woman and we are all so proud of her. She takes it all with a smile and we have no doubts that this will be a success. Plus she has TWO Birthday's now....who wouldn't like that, right?

[Jill2008]

Thank you for the wonderful encouragement everyone. I'm feeling much better today. At least now the slightest smell or thought of food doesn't make me sick. It's a good thing too because tonight is turkey with mashed potatoes & gravy! My throat is becoming increasingly sore and it is getting more difficult to swallow, so I am pretty much restricted to a soft diet. There are plenty of popsicles and jello to go around here though.
I received one unit of red blood cells and platelets late yesterday and one unit of red blood cells this morning and it has made a world of difference. Because of my low white cell count though, I am now confined to my room. No more walks around the BMT Unit, with the staff there to urge me along. Now I must have a stationary bike or treadmill brought into my room for exercise. At least I have a room with a beautiful garden view so I don't go too crazy and a visit by Art For Health provided me with some art projects to work on. I was also visited by a woman from Guided Imagery who gave me a sample of her relaxation and pain management techniques. (I feel asleep during her visit, so I guess it really works.

[Neil Cuadra]

Hi Amber. Thanks for keeping us up to date.

Jill: Congratulations on your new birthday!

Your latest hardships -- having a sore throat and being confined to quarters --are, unfortunately, right on schedule!

I'm impressed if you are using a stationary bike or treadmill despite feeling lousy. Do whatever keeps you most comfortable, mind and body.

During my wife's transplant I requested a particular room in the transplant center because of its great garden view. I thought it would be something cheerful for her to see very day. But as it turned out she had to keep the blinds closed the whole time she was in that room, because the light bothered her eyes!

Keep up the good work, Jill. Say goodbye to cells from your own marrow and welcome the cells made by your new marrow!

[squirrellypoo]

Thanks for the updates, Jill & Amber! I can't view your caringbridge site so this is the only way to know how you're doing.

I'm jealous about your room view AND the art! My room just looked out onto a brick wall. Sometimes a fat pigeon would rest on a drainpipe. Pff, such excitement! And I've always been a crafty person, so friends and family brought me embroidery and jewellery making to work on, but I love that your transplant centre provides activities. This is the time when you most need to stave off boredom, so try to keep active, either mentally or physically!

You're doing great, keep it up!

[Laura]

Glad to hear the updates too. We are thinking of you Jill and wishing you great success. Happy re-birthday! Pretty soon you will be celebrating your one year anniversary too Hope you are feeling better every day.

Laura

[Jill2008]

Sorry for the lack of updates. My journey took a slight detour to the ICU for about four days. I developed a blood infection (E-Coli), my lungs became surrounded in fluid causing my oxygen saturation to decline and I began to have heart arrhythmia. My central venous catheter became infected and I had to have it surgically removed and a PICC line placed. It's amazing that through it all, I had a one time low-grade fever of 100 degrees only lasting a few hours. I am now at Day +21 and have amazed my doctors. I am eating, exercising and gaining strength daily. After many days of my white cell count being at 0.1, I am beginning to engraft. My white cell count climbs daily and was at 0.3 last night.
Jill

[mausmish]

Jill, you are obviously a strong and amazing woman. You're an inspiration to those of us who are not yet so far along on the journey. I'm still struggling with the decision to move forward as the search for a donor begins.

[Jill2008]

Karen,
I know it's a difficult decision. With the new finding of Monosomy 7 I really didn't have any choice other than to procede with the transplant. If I waited I took the chance of transforming to AML. I have a wonderful husband, three daughters and a 9-month granddaughter that I can't bear to leave. This is my inspiration to fight!
Jill

[squirrellypoo]

Oh no, what a scare you gave everyone! I'm so glad you hear you've pulled through and are engrafting now. Keep on fighting, and thanks for the update!

(if it's any consolation, my Hickman line got infected, too, and I much preferred my PICC line in the end!!)

[Laura]

Glad to hear things are looking up for you Jill. Quite a scare you had there!
Laura

[Jill2008]

Well, I was scheduled to be discharged a week ago, but had some bladder pain that was not getting better. Turns out I tested positive for the BK virus, which I am now beng treated for. Once this clears up I will be discharged. I haven't had any other issues and my appetite is good. In the meantime, my white cell count has climbed to 2.2.
Jill

[squirrellypoo]

Oh Jill that's great news you'll be out soon! It makes such a difference to be at home with your own things and to be able to eat your own food again!

I'm not familiar with the BK virus, what's that? I tested positive for EBV post-transplant, and it wasn't a problem. They check for these things all the time and know just what to do when they catch them early. You'll be home and enjoying the sunshine before you know it!

[Jill2008]

Hi Melissa,
The BK virus infection is a type of polyomavirus that infects most people (dormant in 80% of the population) but generally causes no symptoms. However, that virus may be reactivated when a patient receives immunosuppressive therapy (Hemorrhagic cystitis following bone marrow transplant.) Treatment involves antibiotics and several days of bladder irrigation with catheter in place. Not fun, but I'm looking forward to relief from he bladder spasms I've been experiencing. While I'm waiting, my WBC continues to climb..now 2.5.
Jill

[Laura]

How you doing Jill?

[Jill2008]

Hi everyone!
I'm still here! After five long months, my doctor is allowing me to go home next week (a four hour drive). I had a couple of setbacks that kept me close to Stanford for an extended period. I had the CMV virus and had to be put on Ganciclovir (IV) for 6 weeks. Now that I have completed this treatment my counts are holding much better and my white cell count is climbing back up. I have not had any GVHD and my biopsy shows that the MDS has been eliminated.
Jill

[mausmish]

Hurray! Jill, it's great hearing from you. That's wonderful news about no gvhd and no mds.

[Susan L]

Well congratulations!!!!