Blog
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Wednesday, November 19, 2008 - 2:13 pm
Day -1
by Van
So tomorrow’s the big day! We’re all very excited. It’s hard to believe that it’s finally here. It has always seemed like this event was so far-off. I have definitely felt like transplant day could not happen fast enough, and sometimes, I was scared it would never be here.
But we are finally here. It’s the last day of radiation treatment (hooray!) and the day before transplant. It’s quite fitting that Michelle’s transplant is happening a week before Thanksgiving as we have so so much to be thankful for.
So tomorrow’s schedule is pretty relaxed. Dr. Delaney’s team will let the 5/6 match cord blood unit thaw out and will deliver the cord blood to Michelle’s hospital room. It will be transfused through Michelle’s catheter into her bloodstream just like a blood or platelet transfusion. It’s actually quite simple. Pardon the lack of medical terminology…but then the little suckers already know where to go…basically Michelle’s lower back bones.
Four hours later, Michelle will get her 2nd cord blood, a 4/6 match, which has been expanded by Dr. Delaney’s team for the last two weeks. Last we checked, she had 30 flasks of it so now is probably when it’s going through a harvesting process that takes all the stem cells from the 30 flasks and it’s “put” into a smaller volume. That’s probably a really crude way of explaining a very complex procedure. Thank god for the smart people at the Hutch.
And that’s it…that’s the “transplant”. From there on, the two cord blood units will fight Michelle’s current body (hopefully any leftover leukemia cells), which it will think is foreign to each unit and I guess sort of fight it out against each other. Within the next 3 weeks hopefully, one of the units will win out and engraft (i.e. accept Michelle’s body) and will produce white blood cells, red blood cells and platelets for Michelle. At this point, Michelle will start feeling a lot better. In the meantime, we will be busy managing the side effects of all the chemo and radiation and will have to be super careful in terms of infections.
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Monday, November 17, 2008 - 11:37 pm
Trippy TBI
by michelle
I get TBI twice a day for 4 days. I stand with my legs between a bicycle cushion underneath to give me a bit of support, but mainly you are standing straight on your feet with your arms to the side holding support rails. You stand inside a 3×3 space surrounded by plastic walls and bars. The radiation beam shoots into your space. I’ll have to post pictures of it because it’s hard to describe.
My 1st appointment was at 8am yesterday. It was quite surreal, mainly in part because I was probably dehydrated and was not given dexamethazone (they don’t normally pre-med with this for TBI). You get zapped 2 times in the front and 2 times in the back. I think each zap lasts around 5-7 minutes. By the 4th zap, my ears started ringing, I had cold sweats and things got very bright. I thought I had said out loud, “I think I’m going to faint. I don’t feel so well.” I guess I didn’t say it loud enough, but luckily the technicians soon realized that I needed a break so they stopped mid treatment to let me sit and barf. It took a while for me to come to my senses and for the bright lights to go down. I think my body knew that something weird is up.
Off to a bad start, which only means that I can only go up from there right? I was loaded up on hydration and medicine so the afternoon session went very well. This morning went well too. Unfortunately during my 4th evening session the darn computer broke so I had to stay an extra 20-25 minutes in the tight contraption. I think my body has a limited threshold before it starts to rebel with nausea, headaches and overall ill feelings. I immediately got a dose of IV Ativan that took the nausea away when I got back to my room.
I probably shouldn’t call them “zaps,” because you don’t feel anything, except hear the buzzing sounds while the machine is on. Each zap feels like it lasts a long time, but I haven’t counted. Today I tried doing Buddhist mantras, “Namo tassa, bhagavato, arahato samma sambuddhasa”….I said it about 50 times during each “zap”.
I’m happy that I have 2 more days, 4 more sessions of TBI to go. Then is the BIG DAY!!!! All of my counts are low, but as to be expected. I got 2 units of red blood cells today, my wbc is 0.86 and my platelets are 50k. Other than that, my room is nice, the nurses are great, the food is bleh (but I blame my changing taste buds), and my energy level is still okay. No need for naps yet!
I miss everyone so much. I hope everyone has marvelous plans for Thanksgiving. Van just told me that the Hutch did a Thanksgiving dinner drawing for its patients and I won a complete Thanksgiving dinner to be sent to our apartment. I tell ya…cancer and all…I’m still a very lucky girl! Many things to be thankful for too.
p.s. Marshawn is back at home. My brother and his sweet girlfriend is nursing him back to health. (Thank you so much Michael and Casey.) He’s doing much better. I can’t believe his overnight stay was going to be 10X more expensive than my own hospital stay. Thank god for puppy insurance.
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Saturday, November 15, 2008 - 1:17 am
Day -6
by Van
We’re officially less than a week until transplant day. Today was Michelle’s last day of chemotherapy. She got her 3rd dose of Fludarabine and 2nd dose of Cytoxan.
After an emotionally and physically challenging Thursday night, I’m glad she’s not getting any more chemo. You can tell this chemo is pretty strong. And with all the pre-meds Michelle takes to combat the side effects, this makes for one drugged up patient. Today was better though.
Saturday is a day of “rest” before total body irradiation begins on Sunday. We’ll post more tomorrow.
Go Bears!
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Thursday, November 13, 2008 - 12:05 am
1st Day of Chemo - Done!
by michelle
It’s hard to believe I started chemo today. My first dose of Fludarabine went well. The burn in my throat is getting a bit worse, but I’m trying to combat it with saline rinses. I am going to try to stay on top of my pain by reporting every new sensation or inkling of pain that arises. I really hate taking pain meds. They either make me nauseous or sleepy.
Tomorrow, I report to the 8th floor of the UW hospital bright and early at 8am. I think Cytoxan begins around noon. Yikes, I still need to pack! Interestingly, patients can wear regular clothes. It hasn’t dawned on me that I realistically may be in the hospital for the next month. Gulp.
One a side note, my brother had to take Marshawn to the emergency hospital tonight. He is vomiting, has major diarrhea, and is very dehydrated. Waaaaa! My poor little guy. X-rays, urine tests and stool tests have found nothing. He’s receiving iv hydration and will be monitored at the hospital overnight. Geez, what a coincidence…
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Tuesday, November 11, 2008 - 10:24 pm
Hooray done with Cranial Spinal Radiation
by michelle
The ‘roids really kicked in on Sunday and I’ve been feeling pretty good (like good enough to break out a smile good). I’ve been keeping all of my food and fluids down too. Today, I just have a bit of heartburn which I heard is common from this kind of radiation.
Tomorrow, I start Fludarabin as an outpatient. Word on the street is that it’s a pretty well tolerated chemo. It’ll be a short break before what’s to come on Thursday. I’m getting admitted into the University of Washington transplant floor to start two days of Cytoxan. I’ve heard scary things about this one, but I guess if it can wreak havoc in my kidneys, mouth, liver, etc., it’ll be powerful enough to get rid of the cancer cells in my bone marrow once and for all and create a comfy space for my new stem cells to set up shop and flourish in.
On a side note my cord transplant doctor sent me a nice update, “Hi Michelle, Wanted to let you know that the stem cells are growing very well. We will be expanding them today - in other words, they will be put into 30 large flasks from 15 little ones. This is good and they are growing at a pace that I like!” Just what I wanted hear…grow baby grow!
Today, we had an appointment to learn about my inpatient stay. During the 2 Cytoxan days, the nurses will wake me up every 2 hours to pee so the toxic chemo won’t sit in my system. Whaaat?!? I thought I was going to get my beauty rest and sleep 20 hours a day. I was surprised to learn that transplant patients keep very busy. Aside from the doctors and nurses doing blood tests, checking vital signs, and poking and prodding me throughout the day, there are 3 things that I can control when I’m in the hospital: 1. Saline rinses every 1-2 hour to help alleviate the mucositis in my mouth, 2. Walking around the hospital floor to exercise my heart and muscles, 3. Deep breathing exercises (10 deep breaths, 10 times a day) to prevent pneumonia in my lungs. Sounds like a piece of cake, huh? Apparently, it’s not as easy as it sounds. I’m going to be tired, nauseous, in pain and drugged out.
My plan is to rely on my family to keep me on task. I can become quite stubborn when I’m in pain, but my mom has a way of convincing (bugging) me to do things. She’s flying in tomorrow. Speaking of family, Van’s sister Agnes from Spain is helping us out for a month or so. She’s brought positive energy and motivation into our little apartment. She’s gone Amazon.com happy and ordered many books about nutrition and cancer. I’ve been wanting to incorporate better nutrition into my diet and I’m extremely thankful that she’s here to do the research and food preparation. My sis Melanie was also here this past weekend. Sisters are the best caregivers. She just knows what I need, doesn’t get on my nerves and can make me laugh. I’m glad she was here during the first rough days of radiation. I’m going to miss her. And then there’s always my constant, Van. He did a great job on my dressing change on my new catheter today despite the stress of doing it for the first time.
I am also going through major Marshawn withdrawal. I miss my yorkie so much. I think he’s a bit depressed too (hahaha..I know I’ve become one of those dog owners). He’s gained 20% of his weight since I’ve left (just 3 weeks!). All he does is eat these days.
This post is a big fat jumble of random sentences. Keeping things short and concise is tough. Plus I hope these blogs will help other patients. I’m going to end it here. Will try to keep you posted. Much love!!!
p.s. Donielle, my coworker, is 30+ days out of her transplant and her stem cells have engrafted. I was so happy to hear her voice today when she called. She has some GVHD, but it seems like the doctors have a handle on it. She sounds fantastic.
