Day +3817: Waiting for a new day…

May 13th, 2021 by

”To wipe away the Uncertainty
That flows around me
Once again to stay
So many choices but so few answers
My time slips away while thinking too much…”

5/13/2021: I decided to get a spine biopsy instead of waiting for a repeat MRI or CT scan, thinking it would either provide us more immediate peace of mind with a benign result or confirm a malignancy that could be treated sooner rather than later. After a negative Covid test on April 24, I had the procedure under general anesthesia on April 27; confusing results trickled in 7-10 days later. Fortunately, my hematologist is readily available to answer questions via email. His comments are italicized.

Flow Cytometry: Mixed phenotype with no increase in blasts.
The specimen consists of a mixture of cell types. A limited panel is tested. Blasts with low density CD45 and low right angle scatter are not increased (1% of cells) but show partial loss of HLA-DR and CD38 and partial expression of CD56, but are otherwise difficult to distinguish from normal myeloblasts. There is a small population of phenotypically normal B cell precursors. The findings are non-specific. Clinical and morphologic correlation is necessary. “Can’t make much of it. Seems to be some cells that are not quite normal looking.”

Spine, Thoracic, T-9 (Core Needle Biopsy): Fragments of mature lamellar bone with fibrotic marrow containing abundant chronic inflammation. While there is no evidence of malignancy in this core biopsy, given the clinical suspicion and the radiologic findings, this tissue may not be representative. Clinical correlation is needed. “Looks benign but they are saying it may be a false negative. Get follow-up MRI in 2-3 months.”

Spine, Thoracic, T9 (Fine Needle Aspirate):
Fragments of bland spindled cells in a metachromatic (fibromyxoid) matrix in a background of bone marrow elements and blood. “Just benign cells seen in bony structures.”

So, once again we are left with uncertainty. I don’t regret getting the biopsy but wish the results had been less equivocal.

My otolaryngologist had already put orders in the Hopkins system for MRIs of spine and neck/head that I can schedule anytime. I plan on getting them toward the end of June before I see my transplant doc again. Until then, no news is good news.

xoxo,
Karen

Laura’s Day +0: If I had ever been here before I would probably know just what to do…

May 6th, 2021 by

.

“…Don’t you?…”

5/6/2021: The question is rhetorical. No. Parallel lines converge in the infinity universe. Yes. Change is a fickle beast. Maybe. Well, let’s try to go were no woman has gone before. Argh. My introduction is as interesting as screaming and arguing with the boulder in front yard seeking to extract the meaning life from its grains. Well, life is what is in the balance.

Karen’s transplant twin, Laura, is sitting on the cusp today of her second bone marrow transplant (BMT). She is of faith, so add her to your prayers – she would like that. The science and doctors give a solid 40% of surviving this treatment plan. In the past, I likened this to being suspended at edge of cliff, while you ponder the odds and next step, let’s breathe a little lighter, smile, and bring you Karen’s introduction.

“Laura and I first met in the Marrow Forums group online about a year after her bone marrow transplant when I was preparing for my own. There were differing medical opinions about the safety of having pets post BMT. I asked the group for their experiences and their doctors’ advice on the matter. Laura responded wholeheartedly that she didn’t know how she’d have recovered if kept apart from her beloved cat, Simon. We forged an immediate bond. That’s Simon pictured with Laura and me at our joyful first in-person meeting for her 5th rebirthday in 2014. In the ensuing years post transplant, we marveled at the many parallels in our medical experiences – she at Mayo, me at Hopkins – and dubbed ourselves transplant twins. Once again we find ourselves on similar paths. A couple of years ago, her blood counts started dropping mysteriously. Mayo was unconcerned; relapse 10 years after transplant is unthinkable. Eventually, she turned to a new doctor at University of Minnesota who took her worries seriously as her condition steadily worsened. And today, she is reborn with a second transplant from a new donor nearly 12 years after her first.” ~Karen

“…Feeling my way through the darkness
Guided by a beating heart
I can’t tell where the journey will end
But I know where to start..”

Laura’s road ahead will not be easy. A lot has been learned in the past twelve years, and a lot has changed; yet a lot is still chance. Run two of the BMT is similar, but not the same. The life saving genetics of the first transplant is just one aspect which complicates the prognosis and path ahead. Whole body radiation, ATG, Cytoxan (cyclophosphamide), and Fludarabine chemotherapy are aimed at destroying the cancer, actually the entire immune system. The medical team found her a young 21-year-old female donor – a change in protocol from last time – aimed not only to engraft healthy new marrow, but also garner the vitality of younger cells and fight, due to genetic divergence the possibility of future relapse. But let’s focus on now.

“…Call my name and save me from the dark
(Wake me up)
Bid my blood to run
(I can’t wake up)
Before I come undone
(Save me)
Save me from the nothing I’ve become
Bring me to life…”

Life…

Laura’s daughters, other family, and friends will be there to support and cheer her on in the future. Life – so much to live for. Best wishes Laura! Happy Rebirthday. Simon and the girls know you will be home soon.

So, it’s a hard road, but it is one that leads to a future. Please send your positive energy, prayers, and/or lucky charms and catnip!

Note: What did you accomplish by age 37? Well, I was reborn twice and made lunch for the kids.

Cheers,
Michael

p.s. Follow Laura’s progress at her CaringBridge site by tapping on her name under Blogs by Others.

Day +3790: To the left to the right, round and round and out of sight…

Apr 16th, 2021 by

“… Up and down, side to side searching all over far and wide,
I was sitting at the station waiting for my train
to a new destination to relax the strain,
Call it a holiday, call it a break,
it’s just something to save me for savior’s sake,
And I’m not looking for trouble, I’m not not looking for fame,
I’m not looking for anything,
maybe a little bit of personal gain…”

4/16/2021: Greetings all, and happy spring. I managed to stay medically boring for an entire week. Then I had my annual CT and MRI scans on April 9, routine monitoring of my lungs, kidneys, and pancreas due to prior findings believed to be benign. The good news is that all of these still look ok. However, there’s a new incidental finding:

CT – Interval appearance of suspicious sclerosis within the bodies of T9 and T10, possible metastases.

MRI – Interval appearance of vague sclerosis within the bodies of T10 and T9. T9 lesion has central lucency. Interval appearance of multiple enhancing high T2 signal lesions in vertebral bodies, suspicious for metastasis, similar to CT 4/9/2021. Calcific tendinitis involving the left rotator cuff versus small loose body, measuring 7 mm.

What does this mean? We don’t know at this point. Primary care resident called me with results same day and said they were sending messages to my transplant doctor (Jones) and my otolaryngologist (Gourin); I was instructed to contact them if I didn’t hear anything this week.

I saw my local hematologist Wednesday for my monthly appointment and blood work. Everything looks good in that regard. Because he’s affiliated with University of Maryland rather than Hopkins, he couldn’t access the actual CT and MRI images, only the reports that I quoted above which didn’t offer much info to help with differential diagnosis. He said they do see lots of referrals due to incidental findings that turn out to be benign. We discussed the possibility of PET scan, biopsy, or repeated imaging and decided to try to get copies of imaging and wait to see what Hopkins docs recommend. I finally heard from both last night and this afternoon. Neither had definitive answers or recommendations.

Jones: “I assume you are completely asymptomatic. MDS could cause sclerosis, your prior head and neck cancer much less likely. Running down unexpected findings on scan is always tricky. With involvement of 2 vertebrae, if it is cancer, it has already spread. Most likely it is nothing or old MDS, however. My druthers would be to repeat scan in 3-4 months if you are asymptomatic. Alternatively, you would need a biopsy of that area. There is no right or wrong here.”

Gourin: “I am surprised. At this date you are considered cured of the oropharyngeal cancer, so I would not expect this to be related to that.
Lets do the MRI of the neck.
The next step would be to biopsy those lesions. Can you touch base with your hematologist/oncologist as well for their thoughts? I will ask the neuroradiologists to set up biopsy.”

I’m not sure why but I don’t feel very worried. I’m tired of something new popping up every time I think an issue is resolved. I’m inclined to get the head/neck MRI and repeat the spine imaging in a few weeks after I see hematologist again on May 6. I feel nervous about any spinal procedure and would prefer an invasive biopsy only if absolutely necessary. Michael, on the other hand, would like me to go with the biopsy ASAP. Based on my history as an outlier, I feel like I’m running in circles and honestly don’t know what to do. I think I’ll sleep on it this weekend and try to decide which way to go. I’ll keep you posted when I know more.

xoxo,
Karen

Update: Just got an email from my hematologist after I forwarded him my Hopkins opinions: “I’ve asked my office to get your scans. Once we have them will review them in our conference. I’m out of town next week be back the following week.”

Day +3775: This is for my outliers…

Apr 1st, 2021 by

”…this is for my people.
Living on the fringes,
trying to figure out how to mend this
Desire to really thrive
while trying to improvise…”

4/1/2021: I had a surprisingly good meeting with my transplant doctor at Johns Hopkins today. It’s my first visit in 18 months – all of our communication has been via email and lab results.

He began with telling me how good I look and the pronouncement that because I relapsed later than any patient he’d ever seen, we’re in uncharted territory. I think he said something about being in “no man’s land” – I can’t remember his exact words. Imagine that, me an outlier. He confirmed that my blood counts look great and that I’m in remission; my chimerism is back up to 100%. All excellent news! I’ll probably relapse again eventually but I might not. Because my marrow is a hundred percent donor again, I might be cured. “We really don’t know.”

I basically have three options for the path forward:

  1. Donor lymphocyte infusion (DLI)
  2. Continuing Vidaza treatments and monitoring counts, DLI if relapse recurs
  3. Discontinuing Vidaza and closely monitoring chimerism and blood counts, resuming Vidaza and/or DLI if relapse recurs

He said he thinks I’m well informed and intelligent enough to decide for myself which way to go but if he were deciding for himself, he’d go with option three because his philosophy is simply to do no harm. He doesn’t think continued Vidaza treatments at this time would offer a better prognosis than resuming them as needed. If I eventually have a DLI, I’ll probably get GvHD but in that case, there are now better drugs to treat it than when I had my transplant.

My current plan is to watch and wait with regular exams and labs. I’ll see my hematologist monthly and see my transplant doctor again in three months. Chimerism can be checked with a blood test. I asked about his threshold to determine relapse. He said now that we know what’s wrong, any reduction in counts or chimerism will be promptly addressed. The diagnostic delays over the past year occurred because relapse at this stage was practically unheard of; it was unthinkable. There were so many other more likely possibilities to explore.

And so the journey continues…remember, regarding our blog, no news is good news. Don’t forget to name that tune!

xoxo,
Karen

p.s. I’m adding chimerism and DLI informational links to the sidebar for further reading.

Day +3759: Tell me, why’d you have to go and get me so constipated?

Mar 16th, 2021 by

”’Cause right now I’d do anything to just get my bowels evacuated.
In the bathroom.
I sit and I wait and I strain and I sweat and I clench and I feel the pain.
Oh, Should I take laxatives of get my colon irrigated?”

3/16/2021: First, a big thank you to Michael for writing last week’s blog after my telling him, “I just don’t feel up to writing – I’ll do an update next week when I can be more positive and upbeat instead of whining and complaining.” There is nothing fun about chemo but at least he’s generally entertaining even when writing about bad stuff. Little did I know my attitude would continue spiraling downward. TMI warning: you may want to jump ahead to otolaryngology.

There are things I don’t care to discuss and typically no one wants to hear about – politics, religion, and the “big C”- no, not cancer…CONSTIPATION. After days of pure misery and consuming a myriad of pills, potions, powders, fibers, and oils, I experienced many disappointing bouts of intestinal cramping with mad dashes to the bathroom that brought to mind the old toilet graffiti: “Here I sit broken hearted, had to shit but only farted….” Then when the desired moment finally arrived at 1 a.m. Monday, I sadly didn’t get there quite fast enough. And then as I sat on the commode with a huge feeling of relief, I vomited, so suddenly and unexpectedly that my entire undigested dinner landed on my feet as well as on the cat dishes, a couple of rugs, and the side of the bathtub. Now that I’ve said way too much already, I’ll end this sad tale by saying Michael truly deserves sainthood after taking care of me and my huge mess.

”When the dog bites, when the bee stings, when I’m feeling sad,
I simply remember my favorite things and then I don’t feel so bad…”

Moving right along, you may recall that I sometimes lightheartedly refer to my Vidaza injection sites as “bee stings.” This photo gives you an idea of what I mean (the spots look worse in person). Now imagine having 15 of these over a five day period every month plus having the prior month’s sites reawakened with the new shots. The injections themselves aren’t bad but the aftereffects can be miserable, akin to being stung by a swarm of hornets. Fortunately, I’ve learned that prophylactic Claritin on treatment days helps bring the overall itching down to a tolerable level. I was also taking oral Benadryl at night but it seemed to exacerbate the constipation issues as well as giving me an antihistamine hangover; Benadryl cream offers some relief. Overall itching continues into the middle of the next week post treatment and gradually disappears once the sites start peeling.

Given the aforementioned woes, along with the general malaise that Michael mentioned and a very painful ulcer on the side of my tongue, I’m very happy and grateful to report that because my leukemia is in remission again, I get to take a break from chemo for as long as my monthly blood counts remain stable. No one, including my doctors, can predict how long this will last but we are focusing on the positive and hoping for a lengthy respite, be it measured in months or possibly years.

Otolaryngology

”And my words don’t sound like they should
So soft then they slowly turn to wood
I look down to only remember
I got splinters on every single finger from
Holding back my tongue…”

Wow, it was a bit of a challenge finding a tongue song that wasn’t about oral sex!

After a couple of postponements due to Covid-19 and weather, I finally saw my otolaryngologist for my annual checkup today. It’s always a pleasure seeing her despite the minor discomfort of the through the nose scope to check my throat and base of tongue (which looked great). Despite our rocky start, she and I bonded years ago over our mutual cat craziness. Since my base of tongue surgery in 2012, the left side of my oral tongue has developed a bulge. While examining the ulcer last week, I noted a more pronounced bump. After much poking, probing, and pinching, Dr. G pronounced the lump was soft and not concerning, most likely a swollen vein that required no intervention. She said I could get an MRI if it would offer me more peace of mind but she felt confident that there’s no sign of malignancy. I declined the MRI for now with the assurance I could reconsider at any time if anything changes. I might since she was able to feel some nodes in my neck today that she said could be related to my MDS/treatments. Barring any other issues, I’ll see her again in a year.

Until next time…remember no news means good news if we fail to post. Boring is good. Life is great!

xoxo,
Karen

p.s. Don’t forget to identify three songs this post.