Tag Archives: hair

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 +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.

IMG_1944 edited.jpg

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.

Bald head.jpg

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!)

 


Hair today, gone tomorrow

Did you know that with this protocol of SCT that the first round of chemo is over…like a week plus over, before hair loss begins? Ya, me neither.

Since the first mention of the transplant, a few years back, I knew I would lose my hair. Every doctor I saw kind of mentioned it in passing, on the way to the “bigger” side effects like nausea, vomiting, mouth sores, infertility, etc. I’m not sure why alopecia caused by chemotherapy seems to be considered as a lesser of the side effects. Maybe because it’s seen as a vanity thing. Having hair, or being bald doesn’t have a physical effect on the body, and I suppose that when there are so many other side effects to be managed, hair loss just doesn’t seem to matter.  “It’s only hair.” Even I kind of felt like that, until it started to happen.

When we decided that the transplant was a go, I went out and cut my hair as short as I felt still looked good. Surprisingly, it was a big hit and made me wish I had done a long time ago. Ha!

Image-1

Left: Before before (the right side is braided…a faux shave), Right: After haircut #1 (the right and left sides are both shaved, kind of like a mohawk without the “punky” spikes.

I decided to wait for the first strands to fall in ernest, before shaving it down. I didn’t want to wait until too much fell, because I felt that would be traumatic, seeing it get patchy.

It was strange, I was finished chemo, and feeling better.  Things had returned to “normal” and mom was planning her return home for a while, except..I was waiting for my hair to start to fall out.

I had these delusional hopeful thoughts that maybe I would be an anomaly (hey, it could happen…look at what else has! ), but alas I woke up 12 days after my first dose of cyclophosphamide with the evidence on my pillow.

2016 08 18 (3)

Rise and shine!

It wasn’t coming out in clumps, but definitely in handfuls when I ran my fingers through it, and you know what was strange? What freaked me out more than seeing it and knowing it was just the beginning, was seeing it as evidence that noxious chemicals had done it, and while I felt better physically, the chemo was still taking a toll on my physical body.

Not to dwell, I decided that I would shave it…or more accurately, hubbs would shave it. So on the 18th of August, this happened:

IMG_4784

Luckily, my head was neither misshapen or had any funny spots.

My sister and her fiancé joined in by FaceTime, and all in all, I felt ok.  I had been anticipating it, and since I had made a plan and bought a couple of chemo caps, and a wig, just in case I was too weirded out when the time came, I felt in control of what was happening (however possible that was).

Now the perks of being bald in the summer are that it is SO MUCH cooler. No, like really, so. much. cooler., and I found myself pretty comfy walking around at home, and in public with my “buzz cut”. I got the “are you sick, or trying to be hardcore?” stares, and sympathetic nods (usually from older ladies who I guess chose to believe it was illness and not really a choice) – but it was okay.

My dad even shaved his down in solidarity:

FullSizeRender.jpg

I see the resemblance, do you? :o)

All in all, things were fine, pleasantly surprising actually…until it started to get patchy:

Image-1-1.jpg

There was no denying it.  This was not a choice. Chemo caps have become a necessity when leaving the house, and while I haven’t yet had the guts to wear the wig (it looks so…wig-like), I plan to do so when the weather gets colder.

The plan now is to shave it, I just haven’t quite gotten there yet…I haven’t wrapped my head around being bald bald, even though it seems like not much of a jump from patchy…it is, in my head anyway.