HSCT-MS Treatment

MESSAGES HOME

During treatment, I'd planned to journal but ended up focusing all my energy on healing and hanging out with my nurse Christian. The closest depiction of what I was experiencing throughout treatment are the texts I sent to my family and friends. I compiled those messages to provide insight into my headspace and how I felt.

NOVEMBER 22, 2020 - TRAVEL DAY

Today has gone smoothly. Delta has been fantastic and has so many safety procedures in place, putting my mind at ease while we travel. The oddest part has been how empty and quiet the airports are post-COVID. It feels familiar in some ways and almost apocalyptic in others. Everyone has been friendly, and we had more than enough time to make it through security. I could forgo the wheelchair this time since I have my handy scooter suitcase. It's awesome and allows me to keep up with my Peter finally. lol

We made it to Mexico City. I'm exhausted but otherwise ok. Upon arrival, they gave us new masks, gloves, and face shields then put our suitcases in a plastic bag to limit germ exposure. Very efficient, so we're off to a good start.

We made it to Puebla. Alex was a great driver, and my nurse seems so sweet, so I think we will get along well. I'm ready to be settled for the night, so we'll talk tomorrow. I am grateful Russia didn't work out after today because I'm not sure I could've made the long trip. I forgot how taxing travel is and am glad to be in my home away from home.

NOVEMBER 23, 2020

Everything is running smoothly. Had COVID tests and blood drawn. I'm going to eat breakfast then have a Zoom call with the doctor followed by a chest x-ray and lumbar MRI since I didn't do that prior. I am hoping to rest again afterward since I'm still exhausted.

There are three groups of five, and I'm in Group 1. Early mornings throughout, but at least I don't have to anticipate it all day. Christian is very friendly and has reminded me of several things before testing that I'd forgotten. She's young, knowledgeable, patient, kind, and always greets me with a smile. She has a Boston Terrier named Pucca that likes to wear clothes :) and loves to travel. She works very hard and sometimes stays at the clinic for four months. She's pretty fabulous.

I went to have tests run, and they are way more on top of things here than in the US. They have shoe washing/drying mats, take temps, give you hand sanitizer, and new gloves every place we've been. They were also literally washing the walls, floors, counters, etc., so I felt very safe and protected. Try not to worry.

I've been cleared for treatment, so I'll hit the ground running again tomorrow. I have meetings with the hematologist, neurologist, nurse to give a medical history and chemotherapy instructions in the morning. Then, I will have my first chemotherapy treatment tomorrow ~1:00 pm. Christian is amazing, and we have enjoyed chatting, but she also gives me space to rest, which I took advantage of this afternoon. I don't think this process would be as easy without her because there's absolutely nothing to worry about since she takes care of it all. There are also no long wait times; your appointment time is your time.

The entire experience has been top-notch, and care has been far above anything I've ever received. Clinica Ruiz was for sure the right choice. Christian feels I'm an ideal candidate for my stage of MS, and she believes wholeheartedly that this will be successful. I wanted to cry and feel very optimistic.

Another perk I forgot to mention is they gave me a cellphone with my daily schedule, which tells me times, locations, procedures when to take my meds, and everything I need to do before specific procedures. It helps make the process painless and takes the guesswork out, so it's foolproof. In addition, it has a direct line to the doctors, nurses, and staff. They all live here at the clinic during treatment, and we have everything done in the same building now because of the pandemic. I've been majorly impressed.

NOVEMBER 24, 2020

I went to the rooftop, and Christian shared a few stories passed down from generation to generation. We can see the Volcano in the distance, which smokes most days. The tall one is considered the male, and the smaller one is considered a sleeping female, so the male watches over her while she sleeps. She also said a massive bell from the most famous church here fell to the ground. The following day it was back in the tower, so the legend says the angels put it back for the people to hear. She also said Puebla is one of the safest cities in Mexico and home to many universities. It's nice hearing stories about where I'm staying. It makes me feel more connected.

I just met Dr. Ruiz, and he has a lovely, calming presence. He went over everything in detail. I have a slight kidney infection that will be treated with antibiotics, and I will take iron to address the anemia. My disability score is at a 4.5 now, which was kind of hard to hear but made me feel like I was here at the right time. Other than that, everything is normal, so I've been cleared for chemo at 1:00.

I'm a little nervous and happy Peter is here for the first day. He also feels I'm in excellent hands with Christian. She tells me, don't worry, you will be fine. She used to administer chemo and has been able to prepare me mentally. So I feel very fortunate to have her and like her very much.

Chemo day 1 is underway, and so far, so good. Lupita put my IV in and was very gentle. I like her and Paquito. I've met the people in my group but am so terrible with names that I can't remember anyone other than Jamie sitting to my right. As antisocial as I am, it's been oddly comforting hearing his journey, primarily because it is almost identical to mine. It honestly made me feel less crazy and that this is just part of it rather than something inherently wrong with me. I remember where the others are from, though, so I guess that's something and will know their names soon enough. There's someone from Australia, Massachusetts, Ohio, Germany, and me from Mississippi.

One down and doing well so far. Christian's mom brought me some tea to help me sleep. So sweet, extending kindness to someone she's never met. She also sent some chili lime peanuts (ssssooooo yummy) and Mexican candy home for the kids and brought Peter some instant coffee he has liked here. The culture here is very thoughtful and is quite lovely.  

NOVEMBER 25, 2020

Had a rough night. I have to make it through today. Hydration is essential, but I couldn't keep anything down, not even for nausea, and believe me, when I say I tried everything last night. Chemo nausea is an entirely different ballgame. Christian said it's normal, though, and not that bad considering the possible side effects. She said that means it's doing its job, and we have to make it through today. A wheelchair is a must today because I'm weak. I'm going to try to sleep through treatment and touch base later.

I just finished and was able to sleep almost the entire time. Christian is concerned that things may be more difficult since I didn't drink enough water, but I'm done with the first phase.

Thank you for the prayers. I feel them and have been able to sleep most of the day. Hopefully, Peter will make it home ok. I know there was some talk about him staying, but I want him to be with the kids on Thanksgiving, and I feel like I'm in good hands here. Thanks again for taking care of them while he was getting me settled. It's really, really hard being apart from them, but I'm trying to remind myself that I am doing this for them. Love you all.

NOVEMBER 26, 2020

Thank you for all the birthday wishes! They made chilaquiles and a beautiful cake. They put nausea meds in my IV, which kept me from throwing up all night, but I still feel queasy. I did eat a few bites of the chilaquiles since I'd never tried it. It's delicious, but I don't want to overdo it. I had Christian take the cake to share with the other nurses. Everything tastes different right now, and I don't have much appetite. Besides, they deserve a treat since they're taking such good care of me. Christian also gave me a beautiful purse. I hung it on the door where I could see it since the colors were vibrant and cheerful. :) 

Sorry, we haven't talked much today. I'm so tired and have been sleeping most of the day. My hair is also starting to fall out little by little. I haven't decided if I plan to shave it or see what happens. Christian said not everybody loses all their hair, so we'll see. I still have a little time to decide, but there is a window since you can't risk getting a cut or infection.

NOVEMBER 27, 2020

Day 2 of shots, so far, so good. I'm praying I don't get bone pain or headaches since I can't take pain meds with Cymbalta. However, I was strong enough to walk to get my shot rather than needing a wheelchair today, so hopefully, I will continue on this path.  

I'm hoping nausea will subside to build my strength back up before the second round of chemo.

Yay! I kept waffles down this morning. They have curry for lunch, which is a bit too ambitious, so I plan to have noodle soup and salad.  

It's been a little bit of a rough go, but I'm staying positive and grateful for having this option. I'm in good hands, so I'm just counting down days now.  

After I get my PICC line, they'll do bloodwork; if my white cell count is low enough, they'll alter chemo as needed. I would not be disappointed if they cut that short or altogether if that's even an option, lol.

NOVEMBER 28, 2020

Nothing new to report today. Resting as much as possible and letting my body do what it needs to.

NOVEMBER 29, 2020

4th day of shots and one week down! :) I'm still doing well with them—slight ache in my bones but nothing unbearable.

NOVEMBER 30, 2020

This is THE week I've been waiting for! Tomorrow we meet about the catheter, then placement on Thursday, my stem cells are taken out, and the last two rounds of chemo are Friday and Saturday, then I have transplant Sunday. Yay, yay, yay!!! Then it's just recovery and home.

I went back to sleep after shots today, and they have Bingo on the roof for my group soon. I can't decide if I'm up for being social or not yet since it tends to zap my energy.

I have had the weirdest, most vivid dreams all week, and I've never remembered my dreams before now, but it's non-stop. Hopefully, it means my brain is starting to recover and function as it should.

Proof I was participating and won Bingo twice. I got Pringles as my prize, so I ate one and gave one to Christian. I'd be lying if I said they weren't the best Pringles I've ever eaten; lol Guess my body wanted something salty.

DECEMBER 1, 2020

Dr. Juan Carlos said I'm a champion with the shots since my arms aren't tender and I've been bone pain and headache-free. I told him it was because the nurses were terrific at giving them. I didn't do well with chemo but have with shots. I think I'll take eight days of good over two days of bad anytime!

Tomorrow I get to go for a drive to see the city, which excites me. Not only will it be nice being outside of four walls, but it will be nice seeing the non-clinical side of Puebla.

They have painting on the roof today for my group but yesterday felt like a lot, so I passed today. I feel bad because everyone in my group hangs out on the roof and socializes every day, but it still exhausts me, and tracking and processing conversation is still difficult.  

Hanging out and talking with Christian is nice, though, and one-on-one doesn't tire me the same. She's very patient and doesn't pressure me to be social. She sees to everything I need and lets me do whatever is best for my body. She's one of the sweetest people I've ever met, and she feels like family. I'm hoping she will come to visit the US so you all can meet her.

I know this may not be a big deal, but this is the first time I've been able to sit criss-cross since MS because I don't have spasticity like before. Then, my muscles were so tight I couldn't sit like this or with my legs crossed anymore, but I did both today. :) I'm kind of proud and excited.

DECEMBER 2, 2020

Sorry I didn't get any pictures from our outing today. I felt so carsick, but it was still nice seeing the sights and learning some of the history. I'm going to head to the room to rest and watch Christmas movies with Christian. We will talk tomorrow.

DECEMBER 3, 2020

Christian shaved my head, so I have a new do. She just kept saying, oh my goodness, you have so much hair; lol I tried to warn her it was thick. My nurse is so cute and very meticulous. She'd say, ok, I think we're done, then I'd do something, and she'd say, wait— no, come back. I think we can do better, lol.

Today was the last possible day I could shave it, and I'm glad I did. It's traumatic pulling handfuls of hair out when shampooing and waking in the morning to find hair all over your pillow. Just felt right and I'm relieved my head isn't weird, and I look decent with no hair.

Everything went well, and I have my PICC line. I have to wait for the anesthesia to wear off and be able to keep a liquid down before we can head back to the clinic.  

I'm home from the hospital. Another thing off the list. Next is aphaeresis and chemo, which happens tomorrow. Only four items left, then it's just recovery.

I took a shower after the hospital, had the dressing changed on my line since it got wet, and am going to lay down until my next shot. Love you guys and will talk soon.

DECEMBER 4, 2020

Today is stem cell harvesting! But, Christian said, that's good because it means my numbers are where they need to be. If they weren't, they'd give me more shots to mobilize my stem cells. I'm so relieved because I was the only one in my group without bone pain, and I wasn't 100% sure my body was doing what it was supposed to. The only downside is you can't eat before aphaeresis, and I go straight from there to chemo. Wish me luck! 

They can only do 2-3 at a time, so it's me, Carla, and Chrissa at 8:30, then Jamie and David at 11:00.

And just like that, my blood is circulating, aka dialysis for the blood. So happy to see those beautiful stem cells.

I'm all done; unfortunately, I fell into the 10% that got every side effect (headache, dizziness, nausea, and body numbness). Today is going to be rough, I'm afraid, and I have chemo in 30 min :,(  

I feel pretty terrible, but the staff says to drink water, and I should feel better. So I trust the medical team and am trying, but it's tough to do that when it wants to come right back up.  

Dr. Juan Carlos checked on everyone and let them know how many stem cells were collected. I felt so blah at the time. I don't think it registered at the time, but I had 6,178 billion stem cells. He said he's so impressed with how many I had. Christian said they usually collect between 140-160 million stem cells, and that's why the doctor was so surprised lol I'm more than happy to be an overachiever in that department.  

I did keep soup and mango juice down for lunch, and the numbness is gone, so now it's just the headache, nausea, and dizziness. I'm going to try to sleep through chemo and will talk later.

I am done with chemo. I am eating a cheese quesadilla and going to bed. Today was a long day, but it leaves me much closer to completing treatment. I'm glad to only have chemo at 9:00. Today was just too long.

DECEMBER 5, 2020

Woohoo, at last chemo! Best of all, I slept through the night and wasn't sick. I was so relieved, lol.

I just finished my final chemo treatment, and fingers crossed, I won't get sick. I am glad to have that part behind me and feel lighter today. I was dreading it so much, and now it's all done.

DECEMBER 6, 2020

TODAY IS MY STEM CELL BIRTHDAY!!!!

I love you guys and appreciate all the support you've given throughout the process. It is so helpful having the support of my family, and that pulled me out of the darkness on some challenging days, in the words of Friday Night Lights, "Clear Eyes. Full Hearts. Can't Lose."

I am transplant patient 1002, and someone said they think I may be the first person from Mississippi, which is cool.

All 6 billion of those sweet tiny stem cells have been transplanted back into my body. The next highest was my chemo neighbor Jamie with 1.2 billion, so I'd say overall, my body has responded very well. I guess Christian was right when she said I was the perfect candidate. :)

I'm sorry I've been out of touch. My body has been working hard, so I've been sleeping all afternoon and still feel like sleeping. I am fine, just tired. I promise to respond more tomorrow, but for now, I sleep.

DECEMBER 7-11, 2020

There were no messages from this time, primarily because I mostly slept non-stop as my body was rebuilding.  

DECEMBER 12, 2020

I woke up with a grateful heart today. My spasticity has been gone for three days now. Today is the first time in years I have had chronic pain; my mind is clearer, so conversations are more manageable, my anxiety is almost completely gone, and my fatigue feels like a normal amount of tiredness.  

It feels impossible to be a week away from coming home, and I am forever grateful for this journey and optimistic about the future.  

The following year will be a roller coaster. I must remind myself not to get discouraged over the next year because I may experience minor setbacks, but they'll settle as my body figures out its new life. My heart feels overwhelmed today, and I just cried discussing all the subtle changes that feel huge. 

How cool is it that my body may hold the key to healing itself?

I've cried more here than I think I have maybe in my lifetime, lol. Movies, commercials, feeling overwhelmed, and grateful. I'm like, who is this person, and what have you done with my personality? Don't tell anyone I might be a softy when this is all said and done, lol. Wonder if I'll keep the red hair if I don't have the attitude to go with it ;) I also wonder if Peter will get any relief when he's driving because, you know, I love to freak out and tell someone how to do their job while holding onto the handle.  

I just met with Dr. Pietriske (transplant dr). I am even more neutropenic today, but he took the time to explain the process and said I am right on target. He said today should be my lowest, and then Monday, I will see an upwards trend. He said he expects engraftment to occur on Tuesday or Wednesday, which means I get Rituximab infusion and complete the process. And yes, I cried when he told me this. But, I felt much calmer after he took the time to explain the process after hearing I might need a blood transfusion.

DECEMBER 14, 2020

I finished with the hematologist, and my numbers are good, so I get my last infusion tomorrow, and I can come home on the 17th. I did it!!! I am a warrior and survivor. It almost feels like a dream. I am so incredibly grateful and hope never to do it again because it is challenging. lol

DECEMBER 15, 2020

I'm officially done and have been discharged. Peter switched my flight so I could come home early. I cannot wait to hug my kiddos and may never let them go.

DECEMBER 17, 2020

We are headed home!

Delta was fantastic! I highly recommend the wheelchair service. I feel better than I have in years, but my body is still new, so it helps conserve my energy, so I don't overdo it.  

HOME SWEET HOME

FaceTime is a beautiful thing. Seeing my kids and watching them do stuff from home helped tremendously. We tried to speak most days, and sometimes it was as simple as watching my daughter paint or my son play with our pups. They were terrific and did a fantastic job helping me feel more connected to them and what was happening at home. They were also on lockdown during that time to ensure I wasn’t unnecessarily exposed to anything that might complicate recovery. My husband worked from home and made sure our older home was remedied of anything that might negatively impact my health; he homeschooled the kids and gave them fresh air in exciting places where they were not around others. It was a huge sacrifice and adjustment for the entire family. I am forever grateful for their gift and hope that my participation in life again helps make it feel worthwhile.

It is true what they say; the first year is a roller coaster. I felt so many emotions, and they were all contradictory. First, I felt so grateful to have had this treatment, but every time an old symptom arose, it would feel paralyzing all over again, allowing doubts that my body was holding steady after HSCT. Then my system would calm again without medication, and tears streamed, breathing a sigh of relief. Waiting a year to see where my body would settle felt like an eternity, but it feels like a blink in time when looking back. I am proud and relieved to say my body settled in at minimal disability, so even if something returns briefly, I thankfully know that it will pass without any medications or drastic measures for now.