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!
I kind of just want to leave my post as just that one line... It feels so wonderful, yet carries such mixed emotions with it... Being the third time I've heard that word, meaning I'm moving forward with a bone marrow transplant, still having who knows how many chemo sessions coming up to mess with any summer plans we might have had...
I am of course feeling relief and joy too, so happy to SEE that scan come back clear, and know the chemo has been working, and let's not forget the loads of praying too! There's still so much work to go through before I'm done with this, but this is the major milestone I've needed to move forward. We are ready for the next step.
Thank you for ALL the love and support, I feel it every day, and am constantly overwhelmed with gratitude! Love to you all!
Saw the doc on Thursday and got my extra dose of Vincristine and TEN pills of Dexamethasone. I swear I put on 10 pounds over the 4 days I take that steroid. Which usually cancer patients need but I'm a nausea eater- I eat to keep nausea at bay so I do NOT have a problem with losing weight from chemo! Not sure which is better... :)
Loved meeting up with dear friends Patty and Dennis at the cancer center who went through a stem cell transplant the same time I did. Dennis is doing quite well, especially considering he's in his 70's and has had cancer 3 times himself. It was so nice to see them and know his scans came through clean.
Speaking of scans... I went in for a PET/CT scan yesterday and will be doing Cat scans next Wednesday. As well as appointments on Monday, phone call from doc on Tuesday regarding PET/CT results (hint: I looked at the images already on CD, but I'm waiting for the official word of the doc to get excited :), and about 6 tests and an appointment on Wednesday for my transplant work up. That's right, looks like we're moving forward!! BUT, I of course won't know more until the appointment on Thursday. Awesome. Have I said before I hate not being able to plan ahead???
As far as how I'm feeling right now I'm doing quite well. HyperCVAD wasn't too rough this time around, though I had the rough three days coming home from the hospital followed by some just dreary days, but not bad ones. I'm so grateful for the incredible amount of help I've had with sitters and food brought in, I think it's really helped with recuperation this time around. I have the usual mind fuzziness from chemo, bone pain from Neupogen shots, sleeplessness and weight gain from steroids, and neuropathy from the Vincristine but all in all things are going well!
I'm getting my Cytoxin right now! It's Tuesday and I came in on Sunday night- got started around 12:30 Monday morning with my first dose of chemo. I've been feeling really great until about noon today when the queasiness kicked in a little, but I'm still doing quite well. Doc Mato has decided to speed up my doses so I can get out of here early again! Should be out of here tomorrow night, a little late, but still a day early! So excited!
My first roomie this time was hilarious- she was probably over 80 years old and refused to look at me every time I walked past her or looked at her. She was understandably upset that she'd been told she was leaving and had packed up and everything only to be told she had to stay another day. But she was CRANKY!
I was hopeful to have a free night last night but ended up getting a second roomie last night at 11:30. She has her husband and a nurse with her all the time, so comes with a lot of noise. But her story is so awful right now- she has Lymphoma but it's in her brain so it has paralyzed her whole left side within just a month of symptoms showing up. She's going through test after test and prepping for chemo but hasn't even started yet. Both her and her husband are scared as can be and have been asking me all sorts of questions, advice, and for encouragement. I'm trying to be supportive, even though our situations are so different! I wish I could be of more help to them, especially the husband. He is really frustrated with the doctors and the chaos- he threw his cell phone and busted it up! I think the language barrier is also a problem- they are Korean and communication is a little rough. They're a sweet couple together though, and he sleeps here in a cot next to her bed.
I had another fun visit with Ashleigh Booth last night! She really is so sweet to drive all the way out here just to visit me! She brought me the cutest package full of glow in the dark toys for the kids, snacks, and pudding! Because the last hospital pudding I got when she was here had a nasty film of oily yuck on top of it and she felt bad I had such gross food to eat! Isn't she great??
And of course she didn't want to be in the picture! Sorry Ashleigh :) We had so much fun laughing and talking that when we walked out the nurses were calling us the "Gigglers." I hope we weren't too loud!
When I got my awesome dinner of a burger and macaroni salad we just had to film it because it looked so awful! However, I ended up eating the whole burger so it must not have been too bad right??
So far I haven't been bored at all here. I've been taking walks around the floor, looking all sorts of things up on the internet, watching Netflix, paying bills, shopping for scarves online, learning about Pinterest, doing my nails, and talking on the phone with family. Adam came to visit today and I was able to Skype with the kids before they went to bed. It's actually been nice to do a little catch up on some of these things but I'd still MUCH rather be at home with my family!
So glad my husband loves me, even when I look like this!!!
Adam and I shared this video on Facebook and I received some mixed reviews... Personally, Adam and I thought this was so funny we just HAD to get it up on FB so everyone else could laugh with us! But I think some people felt bad for us watching the lint rolling... Just to clarify- it's my third time losing my hair completely and it does not bother me AT ALL! I know I look better with a little hair, but it's really just hair, it will come back! And I'm really looking forward to wearing my cute head scarves and shopping for more!! :) I'm even going to try false eyelashes which I've never done before!
Mykelle and Evan had fun with the lint rolling too:
I shaved afterward and it took me FOREVER!! Because I still had so many long hairs attached to my head. I really should have tried the duct tape on the back of my head... It would have made shaving go much more smoothly!!
I hate that my melon is so super white and shows up so easily under caps like this!
Nothing cools a hot head down like an Otter Pop...
I had my weekly doc visit today with Dr. Mato and NP Mary Curtin, and it was FUN! I love those two! They always bring up my blog and act like they don't read it... Okay, they probably don't but they still get uncomfortable when they think they've done something bad that will make it to the blog- like say things to me that are maybe unprofessional for doctors to say to their patients. It's fun though, we have a good time talking and joking around, and I know they really do care about me and my health.
My blood counts are good and I signed the admit form for chemo next week. The wbc went up to normal range, 4.4, and my hemoglobin is back above 10- they think it was low over the weekend and I should have gone in for a blood infusion since I was so hazy. Not too worrisome though, I wasn't fainting or anything :)
I've been having some more side effects from the Hyper CVAD regimen, quite a bit of cramping and bloating of my abdomen, soreness in my lymph system through arms, neck and chest, headaches and peripheral neuropathy. I've decided that much of what I'm feeling is "normal" for people going through chemotherapy, just that it's worse than last time so it's surprising to me. And not that it's bad really, just the stuff I have to deal with to get this cancer out of my body! In the end, it's worth it!
The neuropathy had me laughing out loud today when I dropped an ice cube 3 times! By the 3rd time I was feeling pretty clumsy but it was funny too. My hands and feet up through my arms and legs feel tingly (except for my pinkies and small toes... weird) like if you've been laying on your arm or leg too long and it's just partially fallen asleep, and it doesn't go away. The docs decided to cut the Vincristine dose in half to hopefully limit the neuropathy. I was worried this meant the effectiveness of the drugs would also be cut in half but they don't seem to think so. I made some flippant comment about lying to them about the side effects so they wouldn't change the dose and they immediately jumped all over that telling me the neuropathy could be permanent so it wouldn't really be a good idea to do that... Yeah, don't really want the tingling forever so I think I'll stick to telling them about all the side effects!
I'm in a haze and have been since Saturday morning. Saturday was beautiful, Adam and I were outside helping the kids ride their bikes with their new helmets and just having a nice time. It came on me quick but I started feeling really tired and it hasn't gone away since. I'm thinking it's due to low blood counts, maybe low hemoglobin because I'm seeing little phantom bugs flying around my vision and get a rushing in my head when I move too quickly. I wish I could tell if I should go in to get my blood tested or just wait it out until my appointment on Wednesday!
I'm all scheduled for chemo on Sunday again, another session of Hyper CVAD A all lined up. I know I shouldn't be but I'm already getting my hopes up that I will be out Wednesday night again rather than Thursday morning. Adam is already talking about having me gone again :( I'm sure he'll handle it, but he is so busy at work, he doesn't need an absent wife too! He probably felt like I was gone anyway all weekend since I just sort of sat around doing nothing... Sorry Honey!
Ha ha! I am laughing at how lame my post title is... Sorry!
It's about time for my hair to go again, so Adam convinced me to try a mohawk before the big shave...
And I love it!! I'm thinking of doing it regularly like this when it grows back in... What do you think??
Mykelle saw my hair and said, "Looks cool, kinda like a dinosaur Stegasaurus!" Pretty cool in itself to have her mom look like a dinosaur huh? :)
I had a doc appointment today. Adam came home from work so we could go together while my Bishop's wife watched the kids (she is AMAZING by the way, cleaned my house top to bottom yesterday with another great woman Ari, and in addition to watching the kids today she brought over one of my fave meals: turkey, mashed potatoes and gravy, and green beans. Thank you Debbie!!) I had to get a little more chemo- an injection of Vincristine and a steroid, Dexamethasone (10 pills a day for 4 days). It went well and was super fast.
My white blood cells are way low, .3 (normal is 4.0-ish) but the other counts are good. Doc said if I get any sort of fever of 100.5 or greater to go immediately to the ER. I woke up today and wondered why I was so tired and lethargic, turns out the low blood count is the answer! But I am taking the Neupogen shots every day that should boost my cells, though the side effect of bone pain has been really strong compared to Cancer #2 last year. I wake up feeling pain in EVERY joint, the worst in my knees and fingers. Makes me have a lot of compassion for those with arthritis! A little pain medication goes a long way though, so I'm feeling especially grateful for it!
I go in for another appointment next Wednesday, this one just a simple blood count follow up to make sure my counts are going back up. Then the next chemo session of Hyper CVAD A will be started on the 27th, a Sunday evening again.
Ugh... This feeling I remember!! Is it considered complaining if I'm stating the facts of how I feel?? I thought I'd do a quick post so I can keep the blog updated, and hopefully stay in the habit of making regular posts, even when I don't feel like it!
I came home Wednesday night and slept until 11:30am. Yes, 11:30!! Fortunately the kids were at Joy School and then with Melissa until Adam picked them up after work. I spent most of the day laying in bed watching "Lie to Me" on Netflix and alternating Zofran and Ativan for the nausea. The day feels like a blur! And the craziest part of this all is everything LOOKS like a blur! My eyesight is actually fuzzy. And maybe it's my head feeling a lot of pressure, but it's hard to focus my eyes. Lovely chemo.
Today Adam and I decided to give the kids a break and just let them watch TV and hang out all day while I laid around the house with them. They've been missing me and had a hard time being at different people's houses everyday. And now they're going stir crazy! Adam set them up with breakfast and a movie before he went off to work and I was able to sleep in until 10:30 before Evan came in and jumped on me! We've spent the rest of the day putting on makeup (yes, all three of us), opening a package from my mom (and eating the chocolate chip cookies in it), and watching silly cartoons. It's been an incredibly lazy day but I feel exhausted!
I've been feeling extremely fatigued- as in, walk up the stairs and have to sit down to rest at the top. Nausea, it's manageable but it's there. Fuzzy head and headache. And there's a film covering my mouth and lips, yeah, it grosses me out too! But you can't see it, I can just feel it. Supposedly that's from the chemo killing off the fast growing cells and can cause mouth sores so I'm trying not to brush too hard or eat stuff that will hurt my mouth, like pineapple. And food is gross. I think I've said this before, WATER is gross. Is that weird or what?? It tastes so bad, but I know I need to drink it to flush out all the chemo, but every time I drink it I feel a little sick. Awesome.
I start Neupogen shots today to start building my neutrophils so I don't get infections and I am taking 3 different pills to keep away viruses, fungi, and something else I can't remember right now... I've also got three different kinds of anti-nausea pills, sleeping pills, and a light pain killer for when the Neupogen shots start causing bone pain. Is it a wonder I feel a little fuzzy??
I hope I'm not too depressing!! I want to list my side effects of the chemo both for my own reference and anyone else going through this regimen but hate feeling like I'm depressing anyone who is reading this. Sorry if you're depressed!! :)
I've loved all the emails, calls, texts, visits, and the package getting out of chemo! It's great to know people are caring for me and my family!
