Day +100

happy-new-year

Freeimages.com/joseassenco

Happy New Year!  I almost can’t believe I’ve reached the 100 day mark, AND on new year’s day. The timing makes it feel even more auspicious, and hopeful. I also share my  100 day anniversary with my dad’s 60th birthday!  How’s that for some all around good cosmic juju?!

jess-hair-growth

I’m feeling good. I finished the Ganciclovir as planned, but had to return to appointments every week, just to stay on top of my blood work, making sure the CMV didn’t rear it’s head again.  My hair continues to grow, and my fingernails continue to peel as they grow out. I am STILL dealing with some nausea, but I’m mostly off of the olanzapine. I am down to meds twice a day now, and that is grrreat!

New Year’s acts as much as a time of reflection of the year past, as it does planning for the year ahead and as I consider what a year it’s been, I am filled with overwhelming gratitude for the people in my life, and some I’ve never even met.

thank-you

Freeimages.com/Daniel G

So on this, my 100 day post transplant and the 1st day of 2017, I am thankful.

Thanks to..

The hubbs. You said you knew what you were getting into when we were married late in 2015, but I can’t imagine this was on your radar for our very first year as husband and wife. You’ve been with me during the good, the bad, and the really bad in 2016. You’ve celebrated the little victories with me, and tried to soften the blows. I love you, and can’t wait to see what wonderful things 2017 has in-store for us.

Momma. You put your entire life on hold to be here to take care of me. You left your home, your job, and your community of peeps, to cook, clean, to play chauffeur, and pharmacist, and therapist, and to be on call all day every day, and through the night. I never felt alone, not once. I really don’t know what this experience would have looked like without you.

My family peeps. You sent cards, and care packages full of surprises. You came to visit, and sent emails, you said prayers and let me know that you were with me in spirit, even if you couldn’t always be with me physically. You helped keep my spirits up, even when things were (really) hard. You rallied, and I’m SO appreciative of all of it. I love you.

My friends. You also sent cards, and emails, and text messages, and Facebook messages, and I always felt like you were there if I needed you. You offered to cook meals, and shop, and you offered rides, and company when I was in the hospital. You offered to travel to where I was, and you also sent prayers, and love. My oldest, and dearest friends – you gave me the space to heal and rest with no expectation, and you also let me know you were only a phone call away. I am blessed.

My home church family.  Even though it has been many years since I have attended St.Andrews in Sudbury regularly, I was speechless at the love and caring I received.  I was included in prayers, and gifted a beautiful prayer shawl that kept me warm and surrounded by love and strength during some of those earliest (and toughest) days. I am still awed by their kindnesses.

Friends of family, friends of friends, very extended family, and strangers.  Let’s face it, 2016 felt like a bit of a train wreck. I sometimes found myself broken hearted by the violence going on around the world, and disillusioned with humanity (can you say “Trump presidency”?) but I was also deeply heartened and buoyed by the well wishes I received from relative, and complete strangers. Comments on this blog, and through other social media, and even gifts from people far away, whom I have never met, gave me renewed hope for humans on this planet.

The BMT team.  Doctors and nurses who provided loving and compassionate care. I’ve always felt like my doctors and nurses are passionate about what they are doing. They are friendly and approachable, and feel very invested in their patients. I’ve never felt like just a number.

With all of this love, how could I feel anything but uplifted, supported, and grateful. Thank you again.


Day +70

Well hello December!  Twenty-two shopping days until Christmas, and I can proudly say that I’m almost done mine.  Luckily, online shopping has made it so that I didn’t even have to step into a busy, germ filled store, but could sit quietly with a cup of tea browsing for gifts.

On the health front, things are good.  My follow-ups are now every two weeks, instead of weekly and I FINALLY finish the Ganciclovir next Wednesday.

I’m STILL struggling with nausea, and can’t seem to eliminate the olanzapine from my list of daily meds. The BMT team assures us that this is not that strange, and they also continue to remind us that everyone is different.

In happy news, my HAIR has started to GROW!! ….I mean…it’s really no big deal *wink* they’re fine little wispy hairs, but they’re definitely growing. My finger nails however, have started to peel. Yep, that’s as gross as it sounds, and it’s also pretty painful. Again, BMT docs say that it’s not unusual and not to worry, but it’s making day to day tasks like getting dressed, painful.

I don’t think that I mentioned it at the time, but the bottom of both of my feet also started to peel earlier in my recovery, and my lips are perpetually dry and peeling no matter the water I drink or the lip balm I apply. I joke that it’s like everything is trying to jump off of my body. My hair, my skin, and now my nails. It affirms just how toxic chemotherapy is to all of the body’s systems. A necessary evil of sorts, I know.

Our house is on it’s way to christmafied. The tree is up and lit waiting for the ornaments that we’ll hang this weekend, and thanks to momma we’ve enjoyed our first little sweets from our advent calendars that she never fails to supply. You’re never too old for chocolate in the morning!


Day +58

snow-scene

Remember this?! It’s baaaaack. Freeimages.com/Margot H

It’s snowing. Big, wet, white, “winter has arrived” flakes.  While I know that this means that my life gets more challenging (think boots, ice, and cold hands that don’t work) it IS pretty, and snow makes everything feel ‘Christmasy’, don’t ya think?

My apologies for leaving you all wondering what has been going on over the past few weeks, but honestly, it’s been uneventful.  I’ve got a little over two weeks left of the daily infusions of Ganciclovir. My infusions are down to once a day, and a smaller dose. Homecare taught us how to maintain my port, and change the bag on the infusion pump, so we’re pretty self-sufficient. The nurse only comes once a week to change my dressing.

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The big bag, was my initial dose, everyday for two weeks. The little bag is my dose now, once a day.

The biggest news (!), is that I’ve reached the halfway point. Halfway to +100 days, the milestone for the transplant doctors before which infection is most dangerous, and things going sideways are the biggest concern.

I’m feeling pretty good. My energy level is already better than it was before the transplant (!!!), so that’s a great sign. I haven’t noticed a change in my CIDP symptoms, but we’re not expecting to, this early.

Remember that the goal of the transplant was to STOP the progression of the disease. They’ve been very clear that they don’t EXPECT an improvement, and if things do improve it will be several months (or years) from now. We stay hopeful.  Right before the transplant, I had another little slide in my symptoms, and it means I lost the ability to write by hand, and the walker has become more of a necessity. Even typing is slower, and less comfortable than ever. So…we’ve all agreed that even if I can reverse those things, we’ll be ecstatic.

My appetite is pretty much back to normal, while I do still seem to be nauseous more than I would like.  I’m not taking anything on an ongoing basis for nausea anymore, having just stopped the olanzapine a couple of days ago. I’m only taking pills four times a day now, instead of six!

I’m still bald(!) and waiting impatiently to see signs of growth. I think it will definitely help my anxiety once it starts to grow, because right now I still LOOK sick and that is proving to be more stressful psychologically than I thought it would be, especially when leaving the house.

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My STILL bald head

On that note, the hubs and I have been to a couple of matinees the past few weeks (when there is almost nobody there), and I have been shopping quickly, and at off peak times. I’ve been on many car rides, and started driving again (yay!) last week.  I remain hyperaware of my surroundings and anxious about being around people, but I have been cleared to eat out again and so even had veggie, and cooked SUSHI after a movie last week! (small victories!)

 


Day +37

Happy weekend everyone! We had a good week around here. Momma is finished her second Springbok puzzle, hubs and I continue our cribbage “tournament” and I continue to feel a little restless.

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Mom’s impressive, SECOND since she arrived, puzzle

On Tuesday  I had my weekly check-in at Module L and as usual I had blood work done. I mentioned last post that they removed my PICC line, and it was so nice to feel free to bathe unencumbered.

I purposely say “was” because late Tuesday afternoon, we got a call back from a BMT nurse. Remember, no news is good news? Well, the news was that my Cytomegalovirus (CMV) test came back showing reactivation. What exactly is CMV? Well for the nerds out there a full explanation go here.

Now, the pertinent bits (thanks Wikipedia):   “[CMV] is a member of the viral family known as Herpesviridae…most healthy people who are infected by [CMV] after birth have no symptoms. Some develop a syndrome similar to [mono]…with prolonged fever, and mild hepatitis. A sore throat is common…Primary CMV infection in patients with weakened immune systems can lead to serious disease. However, a more common problem is reactivation of the latent virus.” *waves hand*

CMV reactivation is something that they’ve been watching for (unbeknownst to me), so when the CMV titre started to rise, they were on it. For me, this means Ganciclovir – an antiviral medication given through IV. The course of drugs is twice a day for two weeks, followed by once a day for four. That’s six weeks, if you’re counting.

Luckily, I can do this at home! I am hooked up to a pump that is set to deliver the medication every twelve hours. The pump and medicine lives in a fanny pack I can carry around (hello 1990!). Home care comes once a day to change the bag of medicine. My port is being used for access since I (zealously) gave up my PICC line. The only real inconvenient annoyance is that the port is on my upper chest and cannot be covered like a PICC line can to bathe. So it’s sponge baths for this kid for the next six weeks. Ugh.

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My appetite is better. I’m still taking anti-nausea meds, but I imagine we’ll be tapering them in the next week or two…I hope. Taking meds eight times a day is kind of intense!


Day +30 (1 month)

It’s been one month since day zero, ONE MONTH since I got my stem cells back. I can’t even believe it!

It’s been an uneventful couple of weeks here. Like I mentioned in my previous post, I have good days and bad days.

In general, my energy level is better than prior to transplant. I’m not waking up every morning already planning how to get back to bed, and sleep. Rest assured however, I am still a #sleepviking, and taking “healthy” naps…especially on bad days.

Not much else feels different so far. I’m still pretty unsteady when I stand or walk, and keyboarding is still proving to be more challenging than a few months ago. I write this with an awareness of what the doctor’s said all the way through. The goal wasn’t to get more function, that will be a plus, the goal was to stop further loss of function.

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Module L , waiting to have my PICC line removed

Some of the highlights from this week included: our weekly check-in at Module L (went fine, AND they took out my PICC line!), and a trip to a matinée of Bridget Jones’ Baby. It was cute, and mom enjoyed it too. We took a lovely drive to see the fall colours in the Gatineau Park, and we made it up to the Champlain lookout. What a view!

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Me and mom at Champlain look out.

I’m feeling a little bit of cabin fever. We’ve gotten a bit of conflicting info about whether or not I am “cleared” to leave the house. Some of the BMT nurses say no, while some say that going out is ok as long I stay out of crowds.  Unfortunately, the puzzles I took out for the puzzle addict mom have pieces that are too small for me to manipulate. She just bought one with larger pieces, we’ll see how that works.

The hubs has also reintroduced me to cribbage, and so we have a bit of a contest on, loser (the hubs), owes the winner (me) a coffee. *wink*

My appetite, has been up and down. I’m still taking all the anti-nausea meds (olanzapine, Zofran, Maxeran, Nabilone) and they’re still doing their job. *thumbs up*

Now a final note…on hypochondria. Ha! How’s that for a closer! I joke, but it’s real.  I am surprised (a little) to find out how hyperaware I am of EVERYTHING. The food I’m eating, the people I’m near, the doorknob I’m turning, or the handrail that I’m using. With their germs everywhere…forever unclean… I’m really having trouble not turning into a germaphobe who panics at the occasional sneeze, but I’m doing my best.  They keep comparing my fragile immune system with that of a baby’s, and I’m telling myself babies are resilient…hey, it’s how I get through.


Sometimes you’re the windshield…

Hello again all! It’s Jess, back in front of the keyboard. Momma did so well with her updates, I’m grateful that she helped document the process. I’m not sure what good drugs I was on I was thinking that I was going to be able to do it, I just had no energy to update you properly myself.

Last she posted, I was out of the hospital for the second time, and going to the BMT clinic on Oct 5th.

October 6th, 2016 (Day +13) to October 16, 2016 (Day +23)

A belated happy thanksgiving to you all!  I have so much to be thankful for, not least of which are all the wonderful, thoughtful people in my life. This experience has been made tolerable by the lovely surprises and great support I have received in recent days. Thank you. Thank you. Thank you.

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Me and sis. You may notice that my right eye looks weird, I burst a blood vessel, adding to the overall loveliness I got going on right now. *wink*

Both Daddio, and the Sister were in town for thanksgiving and it was awesome to see them. Daddio even came to the BMT clinic one day so that he could see where I was spending so.much.time.

Fall is in full swing, and we’ve had some beautiful autumn days. Momma has done her best to encourage me to get some fresh air every day, and I’ve even been out for a couple of short strolls.

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Mom and I took a short stroll at Hog’s Back park.

Over the last 10 days, my time has been spent between home and the BMT clinic. I’m pleased to say that I haven’t had another admission to hospital since our last post.

As you may recall, I started out by having an appointment every day at the BMT clinic (day hospital), then it became every other day.  On October 9th, I was officially “discharged” from the hospital. This means that, I will no longer have appointments on 5 West, as part of the day hospital, and if I need to be readmitted I have to go through the emergency department like everyone else – they are no longer holding a bed for me.  It also means I will start to be seen once a week in the BMT clinic in Module L, at the hospital. (Much more like a doctor’s office than a hospital room.)

On October 11th, I had my first “post-transplant” appointment in Module L. Nothing significant to report. They do blood work at these clinics but we don’t have to wait around for the results anymore, and we were told that they would call if there was something urgent. So, no news, is good news.

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A work of art by mom. So.many.pills.

The song lyrics for how I’ve been feeling these last 10 days are: “Sometimes you’re the windshield, sometimes you’re the bug.” I have good days, and bad. Some days I have energy, some days I sleep most of the day.  I’ve been struggling with nausea, but the doctor changed my anti-emetics from “as needed”to several times a day.  It seems that that has taken the edge off of the nausea. The doctors assure us that all of this is normal.

Another common side effect – poor appetite. Although I’m not nauseous, my appetite is pretty much nonexistent. I’m mostly eating soup, jello, toast, and crackers and cheese. Everything tastes strange, and NOT in a good way. I wouldn’t call it metallic so much as bitter.

One other side effect that I’ll mention that’s popped up, is hyper-pigmentation. Busulfan causes this, and it’s under my arms, and in the creases where my body meets my legs. We were told it would happen, and that it would resolve itself.


Sprung 2.0!

October 2nd, 2016 (Day +9)

WBC = 0.7 !!!
Jess was awake most of the day. Doc says maybe she can go home on Tuesday (Oct 4); so not a few weeks as originally discussed. They seem more motivated to get her home than when we were first discussing the transplant plan. Better to be home in your own bed if possible.

Using much less of the Fentanyl pump for pain control. Rinsing with”Magic Mouthwash” before meals has helped Jess eat a little more; it provides temporary freezing that wears off fast. Ensure hurts significantly going down but Resource, a different liquid meal replacement option that packs ~450 calories, hurts much less. We played two games of Skip Bo. Yesterday and today we’ve walked around and around the circuit (on the unit). This evening we commandeered a wheelchair, figured out how to make it dance with the IV pole, and ventured down to the quiet 2nd floor and then even outside for five minutes! Glad to say the incontinence was very temporary and seems to have cleared up.

October 3rd, 2016 (Day +10)

WBC = 2.4
Jess was able to eat almost all of her breakfast; Magic Mouthwash and Sulcrate now giving sufficient relief to eat soft foods. This afternoon Jess was untethered from all but the Fentanyl pump. Happy to report that she hasn’t needed to use it since early morning! Went outside again this evening for a little while. It has been sunny, warm autumn days in Ottawa.

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“What’s that you say IV pole? You’ve got nothin’ hanging? Sucks to be you ;)”

October 4th, 2016 (Day +11)

WBC = 4.5
Jess didn’t need the Fentanyl at all thru the night or this morning so it is gone now. Yay! We were told during the planning meeting that if she did get mucositis it would clear up as soon as the WBC count started to come up and that’s exactly what is happening.

Jess was discharged at 2:30pm (sprung 2.0!). First stop was The Cupcake Lounge for a German chocolate cupcake for Jess.

She had a soak in the tub, clean sheets, and all kinds of PVRd shows to catch up on but mostly sleep won out.

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Sprung 2.0

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She SOOOOOOO has her priorities straight, eh? That’s my girl!

October 5, 2016 (Day +12)

WBC = 3.9
Today was a hospital check in (BMT clinic) day; we are there for two hours while they check vitals, draw blood, and wait for the results to come back. All is well. Jess has taken nothing for pain for the past 24 hours and only very occasionally something for nausea.

The decrease in her WBC was expected by the team since she is no longer getting Neupogen. She was getting daily injections up until yesterday.

Tomorrow will be a rest day … no clinic appointment! Yay!