On Monday I received results from my latest PetCT scan... Adam and I breathed a HUGE sigh of relief! "Recurrence of Lymphoma not suggested." Doesn't sound exciting the way it was written, but of course it IS! Wouldn't it be funny though, if you were a scan reader to put in there, "Have a party, your body is no longer glowing with radioactive tumors!" or, "All that chemo you went through may cause a secondary cancer, but TODAY IS NOT THAT DAY!!" or even a simple, "No cancer detected. Hooray!" At least I think it would be quite hilarious, until you got fired of course :)
I also received a booster flu shot and the go ahead to have surgery the next day to remove my gallbladder :( I have been doing a lot of research on gallstones and having your gallbladder removed- it appears that many people who have undergone chemotherapy and specifically a bone marrow transplant get the stones and eventually need theirs out. I've known that I had a lot of gallstones for about a year now but because it only bothered me occasionally it was suggested I leave it alone until if/when it started bothering me. Well, it started bothering me as can be guessed! Doctors said it wasn't a problem to have it out so we went ahead with the 7:30 am surgery on Tuesday.
About 6 months ago I started noticing my gallbladder aching under my right rib pretty constantly and would occasionally have a slight "gallbladder attack" after eating a particularly heavy or high fat meal (think bacon or those super cheap and super delicious Totino's pizzas that probably cause cancer from all the crap they put in them...). Then two weeks ago I indulged in another Totino's pizza slathered in delicious homemade ranch and I was in heaven... UNTIL... About two hours later when my right ribcage and shoulder were in so much pain I couldn't get comfortable in bed and absolutely could not sleep even after taking three 5mg Ambien! That's crazy- when one usually knocks me out cold. So of course I started reading on the net about all the problems gallstones can create and how one can end up in the emergency room getting emergency surgery... And I called my general practitioner in the morning. Within a week I had the surgery scheduled and just needed results from my PetCT and the ok from my docs!
Let me tell you though, I was worried SICK the pain in my right shoulder blade and front right chest was going to be tumors growing instead of gallbladder problems. For 3 months I've been unable to sleep on my right side due to the pain in my upper right quadrant and to the nodule on my thyroid that is just HUGE and feels like it's cutting off blood flow to my face if I'm not laying just right. I have been constantly observing my body to notice any "B Symptoms" of cancer, like night sweats or slight fevers as I was getting the last two times cancer presented itself. Fortunately I never noticed anything like those symptoms so I held off calling the docs. Until the attack of course :)
Yep, that's my gallbladder! I made the pics small so nobody gets TOO grossed out (Dad)
This is after it's out and ready to be done- I think it's cool the surgeon gave me these pics, but I couldn't look at them until the day after surgery :)
Now it's been 4 days since the gallbladder removal and I've got ZERO pain in my shoulder and even slept on my right side two nights since! How exciting :) I know, it sounds so dumb, but I was going crazy only being able to sleep on the left side! And my eye wrinkles were getting really bad on that left eye too :) It's true. Wrinkles have already improved since sleeping on my back and switching sides the last four nights. I never knew how harmful ones sleep habits could be to face wrinkles! But that's a tangent isn't it? I was getting to how the recovery from surgery has been; and it's about how I expected. Lots of sleep, pain in the belly, and cramping/grumbling constantly but at it's worst after eating anything. And another aside? Why not; the food I've received has been AMAZING!! I feel so spoiled- my family and friends have really taken care of me these last few days by bringing food for us and taking the kids a bit to play. It's so uplifting to see how much people care by the things they do after a surgery! Or after a baby, or chemo, or a death in the family- some good things can come from tough times that's for sure (though of course a baby is not as tough as the others :)
Wow, I just read through this post again; it's quite long-winded isn't it? Too much gallbladder stuff, sorry :)
Back to my oncology appointment at Huntsman (Dr. Hildebrandt is my doc btw, I'd recommend him to ANYONE, he has really been wonderful), my doc said he wants to see me in another two months for a checkup and additional vaccinations but I don't have to have another PetCT scan for 6 months!! This will be the first time I've gone longer than three months without a scan since fall of 2010! Is that crazy or what? I do wonder how many scans a body can go through without causing extra problems from all that radiation... Oh well, I guess the good outweighs the bad, until the balance tips? Whatever, I have other things to have anxiety over, I can push that topic out of my mind :)
I'm looking forward to the next couple months without having to drive to SLC for any appointments! Yay! As always, thank you for your continued support and following of my Cancer Journey- It feels great to share it with others and know there are those that can find this blog to hopefully help with their journeys. It's not fun it's true, but it's sure a lot more bearable with support! Love to all~
Benign: Music to anyone's ears, but particularly to a 3 time cancer survivor undergoing her 6th biopsy!
My doc told me he'd call me with results anywhere from 3-7 days later. On the off chance the results were in the computer before then, I checked my chart online… I want to be shocked that I could read my results before they were given to me but I'm too happy the results were exactly what I wanted to see :)
I went down to Huntsman on Thursday for the biopsy- I asked my doc if I could get a pic of him holding the giant needle next to my neck while I looked scared over at him… He made me repeat myself several times then said, "That is perhaps the oddest request I've ever heard." I got a good laugh out of it but he still seemed confused at why I'd want it :) He didn't want to be in the blog though, and was very hesitant about me even seeing the needle before the biopsy until I told him I'd already seen it during my first biopsy. Kinda funny. So The point is, I don't have very funny pics for your enjoyment, but I do at least have a picture of the biopsy :).
Thursday, December 19, 2013
Merry Christmas! It's a beautiful snowy day I've been enjoying with my family at home. I was supposed to travel to SLC for a thyroid needle-biopsy and as seems to happen way too often, a snowstorm got in the way so I've had to cancel!
In October I was able to go through my one year testing post BMT. All tests came back looking great, I even received the compliment from my doc that the blood results were perfect; better than his would be even! A nice compliment to hear for sure!
The only speed bump I hit was in my PetCT- the two nodules on my thyroid had grown instead of shrinking, and there was the beginning of a third nodule/bump/cyst/lumpy thingy that was suggested I get biopsied. Of course, I've run into rescheduling problems, a doctor quitting and having to schedule with a new doctor, and now a snowstorm, so the biopsy is scheduled for January 2nd.
I'm a little grumpy about the subject of my thyroid… Back in January I came down with a light case of GVHD and fatigue (yeah, that's only maybe two or three posts back… sorry!), I was put on prednisone and over the following 6-9 months I gained FORTY FIVE pounds, and had about zero energy even with the steroids, and continued to have joint pain. I was told repeatedly that I shouldn't have joint pain, the weight gain was normal, and I just had to wait until I went off of prednisone. I was also criminalized by several doctors who thought I was abusing pain medication because I "shouldn't" have pain in my joints. That's a long story though, and one I didn't want to tell because I was angry, and therefor caused a reticence to post an update. Well guess what?? As soon as we found out I was very much hypothyroid and I started Levothyroxine (thyroid replacement hormone) I lost over 15 pounds in 2 months and all joint pain vanished, and I had energy! I was able to quit my "abuse" of medication almost overnight! Funny that. And now we come to the BUT. There's always a "but," right?? I really really hate the "but." After almost two months of thyroid replacement hormone I started having crazy anxiety, sweating, fatigue, and other generalized craziness. I can't even take 1/2 of the smallest dose of Levothyroxine without feeling all these symptoms of HYPERthyroidism. Even though my blood levels say normal and my doc told me today over the phone that there's no way the medication is causing this and it's probably an underlying condition I need to get checked out. Huh- interesting then that when I don't take the meds I don't feel crazy, but (and there's that dang word again!! I feel like I should be able to make some childish joke here about buts and butts… BUT I can't think of anything witty at the moment!) And where was I? Yes, BUT, when I do take my medication I feel crazy all over again- crippling crazy. So… back at square one I guess. Oh yeah, the joint pain and fatigue are back too; I've only been off the replacement hormone for a week!
I feel terrible posting all whiney stuff on here. And I know, I'll have some people thinking I should be able to tell it like it is, right? Among others thinking I'm alive aren't I, so shouldn't I be happy about that?? Or maybe that's me getting down on myself… I'm a positive person though, I really dislike being angry, feeling helpless, and being depressed about the never-ending crap. Yes, crap. It's kind of an all-inclusive word. Crap I get from others who think I look fine, I don't have cancer, so why am I so flaky?? Crap around the house- I never was a good housekeeper, and now my housekeeping is non-existent. Crappy motherhood- I don't have my kids signed up for anything other than school because it's too difficult to do anything other than shower and get through the day in a haze. I'm crap for a wife too- sorry Honey, I know you hate hearing me "sell myself short," but we both know it's true! It's not like Adam isn't busy enough with a relatively new job he's tackling daily- it's not much help to have to do everything around the house too! Do you know our cars still have New Jersey plates on them??? It's been a whole year! And because the cars are in my name, the plates just haven't been changed. Well this is embarrassing… BUT, whatever! Yes, I'm bringing back the "Whatever!" with a big W!
It's actually therapeutic to write all this out. I should probably go back and delete that last paragraph… BUT I won't :) That's the kind of behind-the-scenes stuff most people with serious illnesses go through I think. I really truly am happy to have this extended lease on life, and grateful to be able to spend everyday with my beautiful family. I look around me and see this amazing valley I live in- the mountains, the people, the small towns… And I'm grateful for it all. BUT, I can always hope for better!
My 9 month PETscan results came in a couple weeks ago and they are clear!! No sign of disease recurrence! Pretty amazing, though life continues to have it's ups and downs, we were quite happy about this last scan- it was a biggie!
I'm posting a simple update for now, just to note where I'm at in the post-BMT process. Graft-vs-Host Disease (GVHD) is the main issue I grapple with currently, since we're not worried about treating cancer at the moment. I have GVHD mainly in my eyes and joints, as well as a nice case of chronic fatigue that often accompanies GVHD. In large part that's why I've kept from posting too often, I have had to cut out a lot of things in my life just to have some energy during the day to spend with my family! I've even had to cut out housecleaning for the most part- you should see the state of my messy home... On second thought, no, you shouldn't! :)
I'm happy to be here, to spend time every day with my kids and my husband, and be seeing my extended family as often as possible. Utah is amazing in the spring and summer, we're enjoying the outdoors every day, and enjoying the time we have together, while we have it. Life is beautiful.
Our new home we're renting in Logan! Not the best looking on the outside, but we love having a home and all this space!
And that's the best way to describe it! I'm HOME. Home in Utah, I feel at home with my new team of docs at the Huntsman Center, we've rented a wonderfully perfect home in Logan where even without our possessions it already feels like HOME. I'm at home sleeping in my parent's basement on a blow up mattress until said possessions make it here next week. And when Adam finally makes it out here for good in two weeks, we will really be HOME!! What a happy, relaxing thing to experience! And though I'm busy running everywhere doing a ton just to keep up, I'm happier. People are nicer. Life is slower, and more enjoyed. My kids are excited every day because every day is "THE BEST DAY EVER!!! " for both of them! It's kind of contagious! (As are colds, EVERY time we come home as the kids are evidence of, being in the middle of their first cold since being HOME). I breathe easier having found an amazing place to live (yes Jersey friends, gonna rub it in just a bit) we have 4 bedrooms Plus an office (that's right, extra space for visitors whenever you come to Logan!), 2 living rooms, each with a fireplace, and a big backyard with a "secret garden" hidden by bushes and overgrown with weeds, but it has a hidden playhouse in it the kids are in love with!! And let's be honest, so am I! :)
Did I get a little sidetracked?? Sorry!! My Huntsman Center visit was amazing, I'm very impressed and looking forward to continuing my treatment through them. Dr. Boyer seems to be nice, I'll try for pics next time. The location itself was AMAZING- both take-your-breath-away beautiful and extremely easy to use and navigate through! Adam and I loved sitting in ONE room and having everyone come to us, rather than traipsing from hospital to cancer center to pharmacy to medical imaging to lab and bag to cancer center.... Yeah, those days could get long!!!
The Huntsman Institute- It's beautiful!
The Plan: My new docs are cutting back my immunosuppressants every two weeks to initiate some GVHD in the hopes I will also experience some GVT (Graft Versus Tumor). I know I've explained most of this before, but it never hurts to explain again right??? I am currently on 1 milligram Prograf in the morning and a 1/2 milligram in the evening. On Tuesday I should be going down to 1/2 and 1/2. So far... no GVHD- not the best sign, we want a little to know the graft is also killing any cancer cells!! As for how I feel... Mentally: Great!!! Physically: well, I've got a lot of body aches, hand and feet aches, and a lot of burning in my lymph system in my neck and a sore throat. Could be better, could be worse.
I have been trying to add pics from my phone and I can't figure it out!! I feel kind of stupid admitting that... But I have some great ones I want to share as soon as I get settled in and am regularly using an actual computer, rather than writing posts from my phone... It takes forever!! My point- I apologize for the stale post. I will edit it later I promise, just wanted to post an update :)
"We all have inner demons to fight... If you don't conquer them, then a life of a hundred years... is a tragedy. If you do, a life of a single day can be a triumph."
So... Kind of a disappointing visit to the cancer center yesterday. I read my scan results and there is small growth (as in, biggest "target lesion" growth was 3 millimeters, not big at all) in 3 target areas, steady in one, and reduction in one (2 millimeters). The most worrisome part is my thymus gland- it's grown quite a bit, however, I've had a biopsy done there and quite possibly have some scar tissue and/or reaction in the thymus and is swollen/growing and NOT cancerous. It's also not bright at all in the SUV brightness of PETscans, and none of the target lesions are bright enough SUV ("yet," always implied, but never said) to predict a rebound of cancer. Hmm... So far you've hear the Not Good part of the appointment.
The Not Bad: Doctors were very positive and said they see this kind of thing all the time, and are going to cut back quite a bit on the immunosuppressants to let Zach's immune system really kick in and get some Graft vs. Tumor effect to shrink these babies once and for all! Since I've not had any Graft vs Host Disease (GVHD) during the first 100 days, they say I could very likely get some now that we're cutting back. It's also not supposed to be a good sign that I have NOT had GVHD yet. From what I've read, a LITTLE GVHD during the first 100 days is a great sign that the transplant will attack any cancerous cells that might be left over.
Next scan is in 4 weeks- I'll be in SLC getting that scan done and getting to know all of my new doctor team there. I'll miss everyone at JTCC- they've been wonderful, and I'd recommend them to anyone with Hodgkin's! I need to get baking though for my last appointment on Monday- I promised them all some of my famous "Best Sugar Cookies Ever" in little heart shapes with pink frosting :)
Monday I have CTscans (mostly for the study I'm in), a regular/last checkup to have blood drawn and checked, get copies of scans and my medical record, references of docs in SLC, results from my bone marrow biopsy I had yesterday (not bad by the way), and to get another transfusion of blood. LONG DAY! And you might be thinking... but in the last post Tessa said she has become a MAN and doesn't need blood transfusions anymore because she's making her own hemoglobin?? And you'd be right!! I did say that and apparently I'm mostly right (why can't things just be black or white? What is this grey crap?? :) My hemoglobin was only 7.7, which was a little disappointing but still shows some improvement- that I'm not dropping into the 6 range and seeing floating dots or hearing the rushing of my heart pumping blood to my brain faster than usual and/or passing out! I actually made it up all 3 flights of stairs at the cancer center without having to stop to rest- that's always been my own personal test of what my hemoglobin will be before we get results back- Adam thinks I'm crazy.
I know, it's been a long time, sorry!! I've had an incredibly draining and tiring 100 days post transplant period (day 100 was Nov. 1st and is considered a major milestone in BMTs). I've felt more tired than usual, taking often more than 30 pills a day, most of them prescription and most of them with heavy duty side effects. I've only recently begun weaning off of them, and up until 2 weeks ago my hemoglobin levels hovered around 6-7, when more like 12-18 is "normal" range for a woman my size and age. I was getting blood infusions every week and finally had a turn around two weeks ago!!
I am now making my own hemoglobin, which MEANS- that I AM A MAN!!!! :) Ok, not really a MAN, but I do have XY chromosomes in my blood, instead of XX for a female. Thanks Zach!! Now we are going to be the closest siblings ever! :) The fact that I can produce my own hemoglobin does mean my blood type has changed, from O+ to Zach's, A something (do people really remember the + or -?) The most important thing my own hemoglobin means: I have energy!!!! It may not be at awesome levels yet, but it's coming!
The last two weeks have been so much better for how I feel every day, and a good thing too- because a lot has happened recently!! Adam has accepted a position in our home state of UTAH and we're moving across country in 1 1/2 weeks!! Soon after accepting that and coming to terms with a horrible time of year to be packing and moving... We had to deal with Hurricane Sandy and no power or heat for a week!! So after a few long days of camping out in our house and crazy riotous lines for gas, we went to Boston over the weekend to stay in a hotel with heat and a gas station nearby- NO lines :)
While IN a Boston graveyard on a tour these nice people recognized me and my family from the Mormon video! Even knew my name! How surprising it was to hear my name said from behind me and to look around and not know the people who said it :) They were so nice, and are the reason I've decided to start blogging again.
Now we're back, celebrated Halloween late, and are off to a slow packing/shedding start before the big cross country drive over Thanksgiving week. Today I have an appointment for a bone marrow biopsy and results from my first PETScan since remission, at 2pm- it's 10am and I'm feeling nervous as I've ever felt- my stomach is rumbly and I feel sick. I may be able to be mentally be stoic but my body sure can't control itself!! I'll post as soon as possible after my appointment to share the news!
I've had a few people let me know they've been watching my blog for an update post-transplant and have been worried because I've not been posting. I am so sorry! The transplant went well, and I am recovering slowly, which is why I haven't posted. I just don't quite feel up to all of the work of a lengthy post with pics. It will happen though... and soon! Meanwhile, thank you for your continued support!
I went in to the cancer center last week on Friday for what I thought was a routine CBC blood check. I ended up being surprised with the suggestion that we go ahead with the bone marrow transplant the next week, July 11th rather than the 18th. I was completely taken unaware, and got upset immediately! I had everything all planned out! Zack's flight was scheduled, Evan's birthday party, Adam's mom coming out, a week of prep for shopping and cleaning (to leave my house all ready for my leave of absence)... I did NOT want to move it up a week! But one of the nurses warned me that if we waited the additional week my CD4 count could go up above 200, the critical point, and I'd have to undergo an additional chemo which would push everything back by 3 weeks. So I agreed to bumping it up.
I went home and slept off my disappointment, then I made some phone calls and sent out the email to change Evan's birthday party to the next day. I was a little stressed out, but we ended up having a really fun party and a nice weekend before heading in to my doctor's appointments on Monday. Where I found out I had not been told the truth about my transplant situation and the whole reason for upping the date on me. It's a very long and involved story so I won't go into it, but the reason the nurses had wanted to move the date was so they had less paper work to do. Seriously. It had NOTHING to do with my health and CD4 levels. Trust me, I let them know I was very unhappy with the situation.
The transplant doc, Dr. Donato, suggested we go back to the initial plan of starting the transplant on the 18th so we could check my blood for viruses since I haven't been feeling 100% and give me an additional week to recover from the last chemo. So once again, the transplant is on for the 18th, though it could always change! I'm very excited to have an extra week to get things together and looking forward to spending a weekend with my family and my mother-in-law!
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!
