Sunday, June 24, 2012

Finally, A Date For Transplant! Maybe... :)


Currently I'm in the hospital receiving my 6th session of chemo this 3rd round of cancer, 3 were Adcetris/Brentuximab Vedotin (FAIL) and these last 3 have been Hyper CVAD A.  I should be getting out tomorrow or the next day.  It's not even been two full weeks since last I wrote but I feel like an incredible amount of information has been shoved my way- which is great!  Because I'm always feeling like I'm in the dark about what's next.  But I know YOU don't want to hear every single thing going on so here's going to be the short-ish version:

The kids came to visit me in the hospital yesterday.  They brought homemade flowers for me and beautiful cards to put up in my room.  Unfortunately kids have to be 5 and up to visit in the room so we have to go out into the visitor's lounge to hang out, but we still had fun!
Sorry the sound is so bad!


6/11:  Went in to get a CBC (complete blood count) and heard the word REMISSION for the third time.  Dr. Mato wasn't supposed to see me but he came in to deliver the good news himself.  I spend a couple hours speaking with Carolanne, my transplant manager, to go over possible scenarios and timelines  of transplant (if/then sort of things, and tons of them).  It was this day I found out I needed to fly Zack in on Sunday for his appointments on the 18th.  I hate last minute things like that, especially because it ended up costing double what a planned flight would have cost!

6/12:  Received an awesome Reiki massage (including foot zoning, acupressure, and other fun massage-like things) from Anca Dumitrescu that is being paid for by my amazing Mother-In-Law Anne just to help me get through some of the aches and pains of chemo.  Looking forward to the next one!

6/13:  Pelvic to brain CT scans done at the hospital.  Basically an extra scan required by the study that I'm in with Zack.  It was a pain in the butt because someone had crossed off one of the required scans but no one could figure out who, so there was lots of phone calls and emails and blame being spread... Not a fun day for me, just stuck in the middle waiting to get scanned!

6/14:  I had a barrage of tests at the hospital- Pulmonary Function Test, 24 vials of blood drawn for testing, met with the social worker to determine my mental health (phew, passed!), muga scan, and met with a nutritionist.  I was so glad to have Adam with me all day because there was a lot going on!  Again though, frustrating day because SOMEONE didn't schedule all the appointments (pretty sure it was my caseworker but she denied it being her JOB so there was more blame and finger pointing while in the meantime... I just stand there and try not to be late to the appointments that I did have to attend).

6/15:  What??  A day off??  Had a great time at the park with the kids and the Averys and then took off to spend the night at a hotel and visit the Land of Make believe with the kids the next day.  Such a last minute trip but it was so fun!


6/18:  Zack flew in the night before and he and I were off to the cancer center super early to get another barrage of tests and information.  We were very anxious about all these tests, just wanting to be sure that Zack would be approved to be my donor.  If he were to be unfit I could lose my best chance at living!  It was a bit of a tough week with that gnawing on our minds until finding out he was good to go on Thursday the 21st.

Zack had to have some blood drawn and he totally psyched himself up beforehand saying he was going to pass out... And guess what??  My big strong brother passed out at the sight of a little tiny bit of blood! :)

He totally looks ticked off that I'm filming but he really just didn't feel good!

Just 12 tiny vials!! :)  He's just like all the Basset boys in my family-
they get queasy at the smallest amount of their own blood!  
The same day on the 18th I met with Dr. Mato to get my CBC results and plan the next chemo.  He explained to me that my white blood counts were low so I needed some more Nuepogen over the next 3 days to prep me for more chemo on Friday.  I was so happy I was able to "suggest" Hyper CVAD A again because we could have gone for EPOCH which is longer AND I would have had to get a PICC line in my arm- no thanks!!  So I was happy about that, but have been extremely UNHAPPY with (could it be my case manager again???) the scheduling of Zack's visit to NIH in Maryland to have his TH2 cells drawn as part of the study.  Had someone scheduled him in good time, I would not be needing this extra chemo at all and would be going directly to transplant.  As it is, I can't wait 6 weeks of not having chemo before the transplant because, though I'm technically in remission, 6 weeks is long enough for the cancer to start growing again.  So here I am, back in the hospital.

6/19-20:  We spent these two days filming for a documentary!  Crazy huh?  We have been working with a director out of Utah who is doing a documentary based on serious illnesses and the different ways people react to them.  She's addressing faith, or lack thereof, and the different taboos some people face- like willingness or unwillingness to talk about death or even the disease itself.  It was a fun couple of days, though long and it's hard to "act natural" with a big camera and boom mike overhead!  Funniest part though was Beth, the director, asking Mykelle if she sometimes prays for her Mommy.  Mykelle's answer, "Yes I do, I pray that she won't be angry with me."  We had a very good laugh at the unexpected turn of that answer :)  Then, oddly enough, a wild turkey flew in front of the camera right overhead to the next yard.  Yes, ODD.

6/21:  Zack met with the transplant doctor and learned more of what he'll be facing for the actual transplant while I met with Dr. Mato for a CBC to see if I was clear for chemo the next day.  Unfortunately, I ALSO had to have another bone marrow biopsy!!  NOOOOOO!  The last one I had did not go over so well so I was nervous about this one.  It actually turned out much better than the last one, but it still was painful and not too fun!  Plus Dr. Mato wouldn't let me film it... Not sure why, just camera shy I guess.  But in case you want to see one done again- here's the last one on video from Dr. Goy in 2010.  Dr. Mato was much more gentle and made the experience a little less traumatic.

6/22:  Zack flew home in the afternoon and I went in for chemo in the evening.  The chemo was, as usual, started late but the docs have been great at upping the speed a little so I can hopefully get out by Monday night (preferably before midnight as happened last time!)

On Monday Zack will be flying to Bethesda, Maryland which is where the study we're doing is based out of (NIH).  While there he will get his TH2 cells taken out of his veins (kind of like on a dialysis machine) which takes a few hours but is relatively painless.  He stays one night and flies home the next day.

Meanwhile, NIH needs three weeks with the TH2 cells to prep them for entry into my body.  Obviously, I do not know all the details or all the technical jargon of what will be happening but it was explained to me like this- his TH2 cells are being trained to be "generals" that will come in to my body 2 weeks after I've received my transplant (Zack's bone marrow cells after I get mine weakened during the preparatory chemo) and these generals will be able to communicate with Zack's stem cells- telling them which cells to fight.  Hopefully they will tell them to fight any remaining cancer cells or problem cells in my body, and not fight off my actual body cells- which is the problem with Graft Versus Host Disease and a major worry of anyone undergoing a donor transplant.

Now here's the timeline ahead, though it's always up for change!!

6/25-26: I'm hoping to get out tomorrow or Tuesday, after which I always feel really terrible for at least 3 days.

6/27:  Start Neupogen shots at home

6/28: I have a dentist appointment to be cleared for transplant- make sure there are no "problem areas" that could cause infection or something of that sort.

6/29: CBC, looking to reach certain milestones with my blood work to be ready for future transplant.

7/1-7/7:  Papa Mike comes to help and visit!!  Planning to see the new Disney/Pixar movie BRAVE (looks awesome BTW).  I have to have two CBCs some time this week and probably do another awful push/injection of Vincristine chemo on the 6th.  If I haven't reached milestones yet I will still be taking Nuepogen shots daily.

7/9 & 7/12:  CBCs, possibly continued Neupogen shots, looking for those milestones

7/13:  Nana Anne here to help and visit!!  We are going to party it up for Evan's big Birthday #4 on the 15th!  She has generously offered to come out and help with the kids and keeping house while I'm in the hospital until August 4th.  We are so grateful to have her help!!

7/16:  I meet with Dr. Donato regarding transplant stuff.

7/17:  I go under light anesthesia to get a Triple Lumen Catheter put in my chest to administer chemo and the transplant cells, as well as receive any hydration I'll need and/or blood and platelets over the next few weeks.

7/18:  Start preparatory chemo for transplant!!  I go into the hospital for 3 weeks.  This first day is called Day -6 and is the first of 6 days of chemo before transplant.

7/23-24:  Zack gets "collected" here in NJ (similar to dialysis again, but it's called Apheresis).

7/24:  Day ZERO for me and and the BIG DAY.  Which is really quite uneventful.  I will be given Zack's stem cells into my weakened immune system.  The hope is Zack's cells will gradually take over my weakened immune system and I will have his blood in my body.  Literally- HIS blood!  I will have his blood type and XY chromosomes.  Is that crazy or what??? The nurse said if I were to rob a bank and get a cut the DNA would match Zack's and he'd get busted for it.  BUT, if it were my saliva or hair it would not match Zack's and I'd get caught.  CRAZY!??

8/3-5:  I get released from the hospital to go home.

8/7:  Back in to cancer center to get Zack's TH2 "General" cells to aid in the grafting of the transplant.

Forever onward:  Initially twice weekly appointments to have CBC's checked, then down to weekly, and slowly fewer and fewer.  Restricted diet, homebound for some time.  Hair starts growing 3 months down the road.  Trying to live a normal life...  Scans at 3, 6, 9, and 12 months.  MAYBE a trip to Utah for Christmas...?  Mykelle starts Kindergarten in September.  Evan needs to be signed up for something, but I can't be around people... Hmmm, it's a dilemma.  Maybe I should just stop now and think about all these things down the road??  Yes!






6 comments:

  1. Dear Tessa,

    I'm a fellow Hodgkin's fighter, although I've been clean for 4 years now. I just want you to know that I will be praying extra hard for you and your family these next few months. I hope that things leading up to your transplant are uneventful and go smoothly. You are such a warrior!

    Sending lots of love your way,
    Brenna

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    1. Thank you! And congrats on being "clean" for 4 years!!

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  2. Tessa, you've been so amazing through all of this and a great sense of humor too. I almost snort laughed about your brother. My hubby passed out when the doc stuck me in the back during my first epidural. Makes for a great story.

    So I know it's crazy with all of this but most elementary schools have preschools in them too. You could call and ask if you can get Evan in their too. If they say it's full just explain your situation and ask for the next higher up person if needed. That way he can ride the bus to school with your daughter and back home if she is in half day. You can also ask for special permission for full day if she will be full day. I think legally the school has to accept him with a situation like this even if he has no delayed learning problems. May I also recommend flu shots for your kids BEFORE they start school. If they can be around you. I think the shots for them is okay but the nasal mist is a definite NO. All of the teachers and school administrators should have their contact information available online. I'll pray that you get the help you need in this area. Making sure your kids are taken care of will give you time to rest and be able to be there for them sooner than later. My Haeley was 4 when I was diagnosed with Hodgkins and my son was 4 weeks old. Her kindergarten teacher was wonderful in helping me get her registered and took such good care of her. It made all the difference in the world. HUGS!!!

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    1. Thank you for this advice- I called the preschool down the road just today and will be trying to get Evan in for a short week starting in the fall. I love the idea of getting the flu shot before school starts, though the problem is usually supply right? We'll see if they have this year's out in good time! Thanks Laura

      PS, loving the DoTerra toothpaste!

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  3. You are amazing! you are inspiring! Thank you!

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  4. Thank you so much for sharing your amazing experiences! Truly a Strong Woman!! Very Inspiring!

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