Day +1859: We made these memories for ourselves…

Jan 2nd, 2016 by

“Where our eyes are never closing
Hearts are never broken
And time’s forever frozen still.”

1/2/2016: Finally! With the addition of a bunch of photos for years five and six, including a sub-album for Karen’s Rebirthday party, our blog is completely up to date.

Michael & Karen

Remember – if you don’t hear from us, no news is good news. We’re hoping for a boring year. 😀

Much love,
Karen & Michael

Day +1858: It’s time to begin, isn’t it…

Jan 1st, 2016 by

“I get a little bit bigger but then I’ll admit…
I’m just the same as I was …
Now don’t you understand …
I’m never changing who I am…”

1/1/2016: Happy New Year Everyone!

Karen has outlined the medical adventures in summary fashion – another year wrapped up in a page of progress and procedures. Uncertainty is certain; all else is the moments upon moments that build the memory of a year.  So Cheers! Here’s to life,  …to Karen …to Mary Lou … to all the travelers on this and yet their own road  …to each and every one of you!  Happy NewYear!

Tag Lines

(not IDed unless otherwise noted)

  • Day +1517: Hold Your Head Up, Argent (1972)
  • Day +1519: Money, Pink Floyd (1973) (IDed by Chris)
    Dark Side, Tim Minchin (2005) (IDed by Chris)
  • Day +1551: I Can See Clearly Now, Johnny Nash (1972) (IDed by Heather)
  • Day +1763: My Type, Saint Motel (2014)
    Birthday, The Beatles (1968) (IDed by Dana and Leslie)
  • Day +1780: Oh Very Young, Cat Stevens (1974)
  • Day +1785: Rolling in the Deep, Adele (2010)
  • Day +1806: 911, Cyndi Lauper (1986)
  • Day +1833: If Love was a Train, Michelle Shocked (1988)
    Casey Jones, Grateful Dead(1970)
    Young Frankenstein quote (1973)
    The Morning After, Maureen McGovern (1971)
    Victor/Victoria quote (1982)
  • Day +1835 : Where Everybody Knows Your Name, Gary Portnoy (1982) (IDed by Leslie)
  • Day +1837: Taking It All Too Hard, Genesis (1983)
    Nine in the Afternoon, Panic! At the Disco (2008)
  • Day +1856: Dreidel, Don McLean (1972)

Day +1856: I feel like a spinning top or a dreidel…

Dec 30th, 2015 by


“The spinning don’t stop when you leave the cradle,
You just slow down…”

12/30/2015: First the main news – all test results are in from my 5-year post bone marrow transplant exam and 12th(?) bone marrow biopsy on December 10. All is good! I’m still 100% donor with no evidence of disease. Thank you again, Mary Lou, for sharing your amazing marrow!

The day started out ordinarily enough – traditional Hopkins selfie, 5 vials of blood drawn, saw doctor and nurse practitioner. 5-Year ExamI expected them to tell me not to return but they want to see me in six months to keep watch on my GVHD. I was called for my biopsy and overjoyed to see my favorite NP, Don, had not retired and would do the procedure. Instead of the usual tiny, cramped room, they’d moved to a spacious room up on 5th floor. Ah, everything should be much easier!

This procedure is usually uncomfortable, even painful, but only for about a minute or two at most. Of the six different NPs and one MD I’ve had, only one was inept which, in turn, caused a traumatic and painful time for me. Don is by far the best – he’s fast and efficient and always gets a good sample for the lab. This would be my fourth biopsy with him, so I wasn’t worried as I lay face down on the table, sweats pulled down just far enough to grant access to my pelvic bone.

As Don anesthetized my behind with a huge syringe of lidocaine, I got one of my random lateral back cramps, the first hint that all would not go smoothly. I asked Michael who, at my request, was busily photo-documenting the procedure, to come and rub my back so I could remain still for Don. The cramp subsided but Don was having difficulty getting a sample and kept moving the needle around. He must have hit a nerve because it hurt badly. I remained quiet but Michael peered over the mask he wore to protect others from his cold directly into my wide, pain filled eyes. Suddenly, he exclaimed, “It’s hot in here,” and disappeared from my view. I called to him, “What’s going on?” Don said, “He’s taking off his jacket and sitting down.” BiopsyNext, I heard a horrid raspy, groaning, choking sound I don’t even know how to describe and female voices, “He’s out – is he coming around? Sir, can you hear me? Are you okay? Do you know where you are?” He replied, “Yeah, I’m fine,” but he sounded not so good. Don was still working on me but my pain was forgotten as I heard more voices, “What’s his BP?”  “Call for a gurney.” “Sir, we need to get you to the ER to make sure you’re all right.”

Don was finally finishing with me as the gurney arrived. I sat up and said, “I have to go with him,” and was told I shouldn’t get up so soon after my biopsy. I insisted, so they got me a wheelchair, and our mini convoy wound its way through the hospital to the ER, escorted by security.ER
Thus began the game of “Who’s the patient here anyway?” Between the two of us, we kept the doctors, nurses and other staff entertained for the next several hours while they tested him thoroughly – blood work, EKG, physical exam – and gave him IV fluids. They finally decided he probably passed out due to a combination of cold medicine, mask, heat, dehydration, and lots of stress, and sent us on our way.
Patience
Our drive home from the city was uneventful – we were both ravenous by then so stopped on the way for dinner at our favorite Indian restaurant, Sizzling Bombay, a happy ending to yet another strange day.

p.s. Everyone at the busy Johns Hopkins ER was super caring, thorough, and attentive, a huge contrast to our experience at Upper Chesapeake on Novermber 7 (see Day +1806).

Day + 1837: No, not this confused again…

Dec 11th, 2015 by

“…no, not the same mistakes again…”

Well, Karen had her 12th, maybe thirteenth bone marrow biopsy yesterday, we were negotiating the counts all yesterday. Even with Karen’s favorite tech, Don, doing the procedure, this one didn’t go smoothly.

“..and your eyes are the size of the moon…
You could ’cause you can so you do…”

When you open your eyes and are staring into the faces of five strange women, things have gone a little wacky. Ok, so here is another wrinkle in the “care-giving” saga. Stress is an interesting animal, tie in a cold, cold meds, and a mask to protect the innocent, and then a body temperature flash.

What I remember – saying was it was hot and moving to the chair I had placed near the end of bed, then nothing. Vision didn’t close-in or any other clues – but it certainly made for a more interesting evening at the ER.

We didn’t even bring snacks or enough water for Karen. Well, anyhow of all the procedures I’ve sat through in the last six years, Karen does have the better story to tell with pictures I’m sure. You never know do you?

Cheers,
Michael

Day +1835: Making your way in the world today takes everything you’ve got…

Dec 9th, 2015 by

 

“…Sometimes you want to go where everybody knows your name
And they’re always glad you came
You wanna be where you can see our troubles are all the same
You wanna be where everybody knows your name…”

12/9/2015: Another year has slipped past, and here I sit, with high levels of both anxiety and irritability (ask Michael and the 7 cats), trying to finish this blog before my annual physical and bone marrow biopsy tomorrow. I chose my tag line and started transcribing my notes on Day +1805, three weeks before my 5th Rebirthday. In typical fashion, procrastination has prevailed. But our blog’s chronology of medical appointments, procedures, and results has been helpful to both Michael and me, and so I persist.

Dental

The year was off to a good start with no cavities at my January 12 checkup but my teeth deteriorated badly over the next six months. My X-rays on July 22 revealed two large cavities and the need for a crown on a different tooth. The preparation for the crown on August 10 and subsequent installation and fillings on September 9 were painful on the pocketbook and on the flesh. Such is the price of my laziness. If your saliva production is very low, it is essential to diligently treat with fluoride daily and Biotene rinses throughout every night. No exceptions. Sigh.

Gynecology

I had my annual gyn exam and PAP smear on July 27, and was much happier that I returned to the female head of the practice this year after my disappointing experience with her colleague last year. Dr. S. was very understanding and easy to talk to regarding my GVHD-related issues. She noted that I was scarred and misshapen inside and prescribed an estrogen cream to help with the dryness and irritation. The GVHD is no longer active but the damage cannot be repaired, which I already knew. At least she didn’t attribute it to “getting older” and “menopause” like the guy did last year. My PAP was negative as was the mammogram I had on August 24. All good news – repeat in a year.

Otolaryngology/Audiology

I continue to be pleased with the results of my neck/chin clean-up surgery, detailed on Day +1517 (Jan. 25, 2015). I’m to return for an annual checkup with my surgeon, Dr. Boahene, in Feb. 2016. My neck and chin are as numb as ever but I don’t feel like I’m wearing a tight turtleneck anymore. The scars healed beautifully. I can tell no difference from the original neck dissection scars. My neck still stiffens if I don’t do stretching exercises every day, and I start to lose range of motion but it is better than before my last surgery. The cosmetic benefits of the “chin lift” are nice, too.

I saw my other surgeon/otolaryngologist, Dr. Gourin, on Feb. 10 for a routine 3-month check-up. She didn’t use the scope because my nose was very sore from a cold that had lingered since Jan. 30. I got bad cramps in my neck when I stuck out my tongue for the exam, probably due to the scars still healing internally from my surgery. She said my throat and tongue looked great, and prescribed an antibiotic for my respiratory infection. I saw her again on May 19, this time with the scope. She noted some normal post-dissection muscle atrophy in my neck but said everything looked great and we’d soon be able to extend visits to six months apart.

The first week of August I developed a scratchy throat and cough, similar to what I’d had the prior summer. Dr. Gourin scoped me again at my Aug. 18 visit and said the ropy saliva on my vocal cords, typical of acid reflux, was the probable cause. She prescribed additional Prevacid (twice daily instead of once) and Zantac before bedtime and suggested avoiding trigger foods like tomatoes and fats. When the cough persisted with an added earache, she scheduled me for an MRI on Oct. 10, mainly to ease my mind as she did not suspect recurrence of the cancer. Although my tongue was indeed fine, the MRI revealed nodules on my thyroid that hadn’t been there before. This, in turn, led to an ultrasound of my thyroid on Oct. 29. A needle biopsy was scheduled but not performed because the nodules were tiny and fluid filled, commonplace and “clearly benign.”

My cough persisted into October, and at my routine exam on Nov. 20, Dr. Gourin discovered a palpable anterior level V lymph node by my left clavicle. This time, she seemed more worried, and scheduled an ultrasound guided needle biopsy. (I looked it up on Wikipedia later – big, scary mistake – and learned there’s a node in this area called Virchow’s Node or “the seat of the devil, given its ominous association with malignant disease.” They wanted to biopsy it on the first available appointment, Nov. 30. I put it off a day since the 30th was my 5th Rebirthday Party from my bone marrow transplant. Michael and I did our best to hide our anxiety and enjoy the celebration but it has been stressful for both of us. As you know from Michael’s last post, everything turned out okay again. Nonetheless, the feeling, “it never ends, does it” becomes emotionally exhausting for us both. Michael and I don’t specifically hide information from family and friends but until we get test results, it’s pointless to have everyone as worried as we are. So on your side, continue to assume that no news is good news. We will tell you if we find out otherwise. But please be patient if we sometimes seem distracted and not quite ourselves. The best news for now is that I made it past the important 3-year mark, and my appointments will be six months apart instead of three – next one not until May 20.

On a less dramatic note, I had a hearing test on Nov. 20 that showed my hearing is neither better nor worse than last year. I’m a little deaf in the high ranges.

Dermatology

I’ve continued my UVA1 therapy through the year with very good results. I had only one appointment with Dr. Sweren during the year (August 18) although I saw him informally at my phototherapy visits from time to time. Today’s tag line is mainly for the dermatology clinic. After 2-1/2 years of frequent therapy appointments, all the receptionists greet me warmly by name as I’m approaching the check-in desk. As I head back for my treatment, I generally encounter a familiar doctor or nurse who also stops to ask how I’m doing, again by name. And, of course, the phototherapy nurses know me well and eagerly await my latest cat tales, accompanied by photos on my iPad.

Backtracking a bit, I wore my bra as little as possible last winter. That, combined with the UVA1, allowed my back and shoulders to finally heal. I started thinking about breast reduction in the spring. Audra, my transplant PA, was supportive of the idea when I saw her in June. I then tried to schedule a consultation with a plastic surgeon to discuss feasibility. Unfortunately, because of insurance requirements, Johns Hopkins plastic surgery department has a policy of not seeing anyone regarding breast reduction unless the patient has had a minimum of 3 months of physiotherapy for back and neck issues and a letter of medical necessity. I couldn’t even talk to anyone about my unusual circumstances, the sclerotic skin GVHD. Next stop – primary care physician on June 22 to get a prescription for the required PT. I completed the “necessary” neck and back therapy, July 7 – October 5, coincidentally with the same therapist I had for the ankle injuries sustained in my 2005 auto accident. When I saw Dr. Sweren in August, he said my back looks better than he has ever seen it. I told him about not wearing my bra helping but being physically and socially uncomfortable due to my large size. He encouraged me to pursue the reduction and wrote a letter of medical necessity. I was finally able to meet with the plastic surgeon, Dr. Cooney and his PA, Allison, on November 11. Both predicted no problems for the surgery and declared me to be a good candidate. I’m waiting to get through my annual physical and the holidays before I decide if/when.

I plan to continue UVA1, trying to wean from once weekly to once biweekly. I notice I can miss a week without ill effect but after two missed weeks, the GVHD and seborrheic dermatitis start to flare.

Ophthalmology

The big news is that PROSE lenses have been a huge quality-of-life saver. Day +1551 post (Feb. 28, 2015) has all the details. My follow-up visits with my ophthalmologist, Dr. Prescott on April 17 and my optometrist, Dr. Hessen, on May 19 both confirmed that my eyes are medically much, much better. I am able to see fairly well and can use the computer again. My eyes dry out painfully at night – the lenses can be worn only during waking hours – but feel better as soon as I reinsert the lenses next day. The daily and nightly maintenance routines aren’t too bad given the tremendous benefits. Sometimes, I remove the lenses during the day if they become cloudy. A quick saline rinse and reinsertion fixes the problem. I rarely wear glasses, even to read – primarily in dim light or for very small print. I saw Dr. Prescott again on Oct. 16, and all was well. There’s some scar tissue inside my left eyelid. Occasionally, when I’m tired and careless, I don’t get that eye open wide enough when removing the lens, and the spot becomes irritated. Dr. Prescott prescribed Vigamox drops with refills to use for a week whenever this happens. I’ll next see Dr. Hessen on May 26 and Dr. Prescott on October 21, each for my annual exam.

When asked how they heard about PROSE, one of our readers mentioned this blog to the folks at Boston Foundation for Sight, who in turn called and interviewed me about my experience. My story was published in their June 2015 e-bulletin, PROSE Eye View. Thank you to whomever mentioned us!

Hematology

I had bloodwork done only five times this year (excluding the annual exam) – the first for my surgery, three for routine checkups, and the last because I was paranoid that my platelets dropped so much between third and fourth. My CMPs (comprehensive metabolic panels) were totally normal, as always, not worth detailing here. The main values for my CBCs were stable and generally very good:


    2015         1/7    2/19    6/18   8/20  10/15  12/10

WBC (3.0-11.2)  10.19   9.55   11.10  12.00  11.60  10.80
RBC (3.9-4.9)    4.38   4.37    4.11   4.27   4.32   4.54
HCT (34.2-42.2) 41.30  41.90   39.50  42.80  43.00  45.20
HGB (11.5-14.3) 14.00  14.40   13.30  14.10  14.30  14.80
PLT (130-382)    479    479     579    234    385    485

The funny thing is that the one time my platelets were in “normal” range in the past six years was the time that scared me – how quickly we adapt to the new normal. I ironically felt relieved that they were in the high range again on the October retest. (12/26/15 update – added my results from 12/10/15)

I saw my local hematologist, Dr. Bahrani, on Feb. 19 and Aug. 20 and my transplant team, Dr. Jones and PA Audra Shedeck, on June 18, all good checkups. My primary complaints are fatigue, lack of stamina, and severe random spasms/cramps but as long as my bloodwork looks good, my doctors are happy. So am I, for the most part.

Interesting general information: Audra told me Hopkins doesn’t do full myeloablative transplants anymore. They do lots of haplo (half-match like parent-child or vice versa), and they still do post transplant Cytoxan to avoid immunosuppressants and GVHD.

Miscellaneous Medical

Sadly, I developed a nasty cold on January 30, two days before my friend Laura’s first visit here. At her home, her Mom had a cold, too, so poor Laura had no escape. She and I spent four days slumped in the recliners or on the sofa, watching movies and playing geeky iPad games – actually would have been ideal if we weren’t both feeling so lousy. While I was recovering from the respiratory infection, I picked up a GI infection of some sort so was sick for most of February. Fortunately, I was better in time for my PROSE training the last week of the month.

NIH called unexpectedly on February 20 for a follow-up interview regarding their GVHD study I did in October 2011. They asked if I was still taking meds for GVHD and were impressed that I have completely avoided systemic immunosuppression and steroids in favor of phototherapy.

When I saw my primary care physician, Dr. H, on June 22, I finally requested authorization for a handicap parking hang tag for my car. I don’t feel particularly disabled; however, in addition to being weak and shaky at times after UVA1 therapy, I found myself getting woozy in general when walking even short distances across blacktop parking lots in the summer heat. My sweat glands were apparently destroyed from prior chemotherapy and/or GVHD so I no longer perspire. Although that initially seems like a benefit, overheating becomes a dangerous possibility. Laughably, I expected the doctor or MVA clerk to question my eligibility and didn’t know whether to be offended or relieved when both were sympathetic and eager to oblige. I must look worse than I thought, 😜. I don’t use the tag all the time but it has certainly been a boon when needed.

I had my annual flu shot on September 21, thankfully covered by insurance and with no ill aftereffects.

I had another upper respiratory infection (aka a cold) beginning on October 18. I was very miserable for over a week but feeling quite good for my 62nd birthday on October 26 despite the lingering cough and hoarseness.

The lengthy tale of my November 7 ER saga has been moved to a separate post.

The day before Thanksgiving, our friend Laura arrived with her husband, Ryan, and her mom,Terry, so they could help with preparation and attend my 5-year Rebirthday celebration the following Monday. Poor Laura was sick again for her second visit to our home.  This time, she arrived with a cold in full bloom and passed it along to her mom. Nonetheless, we all managed to have a great Thanksgiving and visit, and the cats became totally spoiled with all the attention. Michael and I caught the cold by the time Laura and her family left a week later. His was snotty and miserable but mine not so bad. I think my (Mary Lou’s) immune system was still geared up from the previous month.

Fun Stuff

Because this is primarily a medical blog, you get a skewed look at Michael’s and my day-to-day happily ordinary lives. I’ll close with a quote I used for one of the word puzzles I handed out at my Rebirthday Party:

“Life is amazing. And then it’s awful. And then it’s amazing again. And in between the amazing and the awful it’s ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. That’s just living, heartbreaking, soul-healing, amazing, awful, ordinary life. And it’s breathtakingly beautiful.” ~L. R. Knost

p.s. The party was fantastic – I’ll post some photos in the gallery soon.