Day +4972: I’ve got a secret I’ve been hiding under my skin…

Oct 15th, 2021 by

“…My heart is human, my blood is boiling, my brain IBM [8086]
So if you see me acting strangely, don’t be surprised…”

And as Johns Hopkins fades from the rear view mirror, fellow travelers, we come to end of (New)Chemo Cycle Two. It has been a hard road, but today was a bit more normal based on the all the previous years of Vidaza treatments. Karen is still very weak and low on endurance. She has leg, joint,  and back pain for which we tried for THC lotion; however, she walked in the bowels of hell on her own two feet. Well, Hopkins mostly only has very nice devils in it.

The three easy Vidaza shots in the belly were uncooperative. Clogging the needles. I offered sage advice like getting Karen a temporary tattoo of a dart board for her belly, which was duly disregarded by Karen and her Nurse Heather. Five sticks and three nurses later, the deed was complete.

She had solid food today – Raisin Bran Crunch, Atkins Chocolate Peanut Butter Pretzel Bar (Protein Meal Bar (16gram of protein)), Sea Shells and Tomato juice.
Additionally, she has been trying to do the physical therapy exercises to regain some strength and balance.

“…So just forget it Doc.
I think it’s really
Cool that you’re concerned
But we’ll have to try again
After the silence has returned…”

The concept of a “normal chemo day” should alert most of you that the author may require his own private rubber room; but, there truly seem to be different layers of hell on earth. I wish that I could attribute today’s normal to the Viadaza (chemo) working, but that is still a big unknown.

Karen’s blood counts yesterday: platelets 19, reds 2.51, whites 3.28 resulted in transfusion of whole blood, saline and platelets to pump her up for the weekend. Although the doctors say it doesn’t matter, we noticed that when she received Type O platelets – matching her blood type, she got a much bigger boost. Post transfusion Platelets were 56. Just let me piss on the ray of sunshine in that you or I would not want to have a 56 platelet count. We are hoping it supports riding out the weekend.

“…These dreams go on when I close my eyes
Every second of the night I live another life
These dreams that sleep when it’s cold outside…”

I never realized how fragile a good night’s sleep was. Karen had one Tuesday and we tried the same concoction of meds on Wednesday and Thursday which resulted in a total failure. The moment by moment quality of life seems indifferent to what humans like … a predictable world.

I’m a bit nervous about the family question of: ” How is she doing?” The hope is better, on the road to being medically boring and cured again. That’s the expected answer.

NOT, hey can you hold that bucket of vomit while I clean the floor or put those sheets in that pile over there.

Things are unpredictable.
Things are unknown.
Things are new.

Each day however, she perseveres.

—-

If you like this broadcast on personal motivation and feeling good, please subscribe below. As per tradition, three songs imbedded in this entry including the blog biggie.

Best wishes to all the travelers on similar journeys.

Waiting… Waiting… just Waiting

Cheers,
Michael

Day +4968: Oh, have a happy anniversary…

Oct 11th, 2021 by

“…’Cause I’ve got you on my mind…”

———- Number 37 ———-

So you’re feeling nauseous, the shake is about to fly?
Girl, I got a deal for you – I’m such a romantic guy.

You’re weak, shaky and a more then a little sad,
Swerve left, dart right, f… brake!!! – See ’95 rush-hour ain’t so bad.

Your stomach turns, your bladder screams,
Hey, a rest-stop on this route?!? – only in your dreams.

You’re looking pale, you breath is shallow,
Just give ’em blood dear – let’s not wallow.

A quiet room, a comfy bed, and all you gotta do?
Lay down Love – let ’em shoot the poison into you.

A birthday gift today – hey, tradition,
I bought a pine box to help with your condition.

The thought of solid food makes you wanna cry?
Girl, I ordered our Pizza – I’m such a romantic guy.

On our anniversary, a little glimpse of heaven?
Sorry Love, Marquis de Sade wrote the script for #37.

—————————————-

“… (S)He wants…”
“…Blood!…”

On the scale of SUCKY, the past weekend rated a good 8 of 10 ( we skipped a 9 (Urgent Care) or a 10 (ER). The poetic license in the Anniversary poem contains a bit too much reality – but no need to be repetitive.

We did have the good fortune today that the blood draw was quick, and Karen was taken into the treatment room hours early. She received Tylenol, Compazine (Anti-Nausea), a nice big bag of Type O platelets, and the coveted 1000ml of Saline.
The blood count for today showed the platelets climbed a point to whopping 8 (150 – 350 normal).

Infusion of platelets drove the count back up to 57, which is VERY NICE. Although, the platelets are life saving, they do little to combat the general malaise.
The 1000ml of saline, aside from combating dehydration, provided Karen with a little boost. The Compazine was administered to ward off the existing nausea and in hopes of preventing the chemo from making this worse. Use of pain medication is very limited for Karen currently. Most of the standard pain meds we all have come to know and love are taboo due to their side effects of lowering blood counts as well as blood pressure.

Her blood pressure consistently has been running on the low side with the diastolic (lower) number running in the low 50s and dipping more occasionally. This contributes to her feeling faint and unsteady at times.

The actual administration of the three Vidaza shots was probably the least traumatic event of the day. For “Chemo Cycle 2”, we will be heading to Hopkins everyday until Friday. Thursday’s agenda includes another blood draw and consult with her CRNP Meghan. Meghan did come up to check on Karen after receiving a note from our infusion Nurse today. The use of salt tablets was sanctioned as an optional supplement/replacement to the liter of Pedialyte she has been trying to choke down each day. The seamlessness of care in contrast to the disconnects we encountered between the two institutions (UMMC/Hopkins) is why Karen opted to suffer through the two hours of commuting each day versus getting chemo locally.

Fingers crossed for Cycle 2. Time will tell.

“…All I wanna do is have a little fun before I die,…”
“…Says the man next to me out of nowhere…”

Ok, so a subscript to the “Number 37”.

Yes, Karen felt pretty green all the way from home down 95 and into the city where we did try an emergency bathroom stop at Popeyes along the way – closed. I’m carrying the sealable bucket John and Susanne gave me; but we slid into the patient drop off spot and abandoned the car to make a run (turtle steps) for it. Yup. TMI.

Yes, I managed to line up Karen’s birthday presents on time for the present a day event starting today our 37th Anniversary through to her birthday . Well, the first present is indeed a pine box.

Stop! It is a step designed to make getting in and out of bed easier. However, it was such a just in time manufacture and delivery that we are using it to drive the mice out of the basement with the smell of vanish.

Food. We’re ordering Pizza. We have every anniversary. She might only eat one bite, but…tradition.

Wishing all of you the best!
Michael

Day +4961: Can’t see the time passing by…

Oct 4th, 2021 by

“…Honey got no money
I’m sixes and sevens and nines…”

Note: This blog is written in memory of Jeanne Robertson (1943-2021), her mantra was to find the humor in ordinary everyday situations.

Monday at Hopkins:
Plan: Travel, Labs, Doctor’s Consult, Infusions, Home.

Well, things went mostly according to plan. We allowed ourselves 90 minutes to make the one hour trip due to Karen feeling extremely weak, interspersed with nausea, dizziness, cramps and general back and leg pains. Spin the malady roulette wheel please. So getting from the house to car is challenging. Once at Hopkins, we opted to use one of the wheelchairs they stage in the parking garage, one of the mini niceties of the Hospital, or so we thought. I wheeled Karen upstairs (got to make big truck brmmm brmmm noises) and only hit one wall and one table before parking the rig in the waiting area.

“… Rainy day people always seem to know when it’s time to call
Rainy day people don’t talk, they just listen till they’ve heard it all…”

We got phlebotomy, the tech asked if she could make it from the wheelchair to the sacrificial altar where they do the blood draws. Karen battled her way to standing up and noticed her entire bottom and back were soaked. Uh oh. Well; nope the tech and I quickly assessed that the cleaning crew did such a fantastic job washing the wheel chair that the seat and back lining although dry before sitting on them had a sponge like quality to them. If you squeezed even the rubber handles water bubbled up.

Feeling crappy wasn’t enough it seems. To top is off, I had my care-giver merit badge invalidated – I thought I was carrying an extra set of underwear and leggings in my backpack. However, I had managed to grab an extra shirt.

“…Don’t get me mad, don’t tell no lie
Don’t make me sad, don’t pass me by…”

We had our consultation with Dr. Gojo. Yes, could have skipped all above.
The CBC came in with new record lows for Karen. Platelets a whopping FIVE on the scale of 150 to 350 being normal. Reds and white also did a dive. Transfusion of both Platelets and whole blood was scheduled. Additionally, the CMP panel showed her sodium was low, which added a 500ml of saline as well.

We had an extensive conversation about the current low blood pressure problem where hydration and exercise (walking) seemed to be the only items which may assist.
Karens’s BPs has been running in 100s / 50s range and down. Dr. Gojo did recommend in home physical therapy – but aside from that it is a ‘live-with-it’ for now new normal.

Additionally, based on the current state of Karen’s counts, a script of anti-fungal meds were added to the current courses of antibiotic and anti-viral. Since all of this potentially tends to trigger additional waves of nausea, Karen also got a script for Zofran (Ondansetron) for nausea. Aside from potentially making her tired, we know from transplant experience, Zofran may slow down the bowels. More fun and the dominoes of meds continue. However, her regular go to med for nausea, Ativan, has been less effective lately.

Lastly, we coordinated to receive Vidaza cycle two (Chemo) at Johns Hopkins starting 11 Oct — Happy Anniversary.

—-

‘… doch du wirst nie versteh’n,
was die Augen eines Elefanten seh’n. …”

…roughly translated.. ‘but you’ll never understand what the eyes of the Elephant see. ‘  Well, the Elephant is in the room.

At this point nobody, knows if Chemo is working. This treadmill of trips and transfusions will continue. Hopefully, next month after completion of cycle two there will be either a dramatic change in counts or other indicators. At this point with Karen’s counts being so low, Dr. Gojo doesn’t want another bone marrow biopsy. Bleeding and infections are too high a risk for what may or may not yield definitive data which still would not alter the current treatment plan.

We are optimistic that Vidaza will work. Karen has responded to this drug wonderfully in the past. However, as Dr. Gojo stated today, this relapse of MDS is much more aggressive and hit Karen at a lower start point. Fingers crossed or substitute your equivalent thought.

Michael

Day +4958: This is just an ordinary day…

Oct 1st, 2021 by

“…Wipe the insecurities away…”

I wish things where that way.
Karen’s Thursday Johns Hopkins visit went in many ways like Monday and in some important ways not at all.

The plan is travel, blood draw, doctor visit, and if needed off to the Infusion Center, travel home.

Wrinkle one was, just prior to getting on I-95, she told me she felt like she was going to pass out. That little statement started a mental planning session of Emergency Rooms in route… first priority is to avoid Upper Chesapeake, than comes the span of coverage Franklin Square (95 to the Baltimore Beltway), the 95/895 section is Johns Hopkins Bayview, once on Moravia Road it’s John Hopkins Main Campus. Fortunately, no side treks or ER stops were required after all.

The second wrinkle is once at the hospital, Karen needed a wheelchair to get from the parking garage into the hospital – which is a normally a one floor trip. Probably could have walked but a fall with the current blood counts has a high probability of being fatal. The wheelchair comment fails to emphasize the level of her current stamina and steadiness. Throughout the whole of the 2010 transplant years of treatment after – a wheelchair wasn’t required.

“… I’m that voice you’re hearing in the hall
And the greatest miracle of all …”

We followed the usual procedure COVID screening through Security, then the stand-alone console check and into the common waiting for phlebotomy and doctor visit.
Karen quietly said, “I’m going to pass out.” So, I barged through the sacred doors to the vital sign stations and exam rooms and interrupted the first tech who was treating a patient. Hopkins techs and nurses are super. Karen was quickly collected, BP taken (it sucked) and quickly shuffled off to see Meghan, our CRNP. After a small eternity, Karen bounced back, and we reentered the phlebotomy queue. (Yup, really skipping the details.)

“…Gimme an F! F!..”

The conversations with the doctor, or in Thursday’s case The CRNP, have a very theoretical and/or ethereal quality to them until the blood counts hit the computer screen.

Yup gimme that F.

Platelets 14 (normal 150 – 300). Ok, the equivalent of Dr. ‘hugs and kisses’ and off to the 2nd Floor infusion center ( Megan, our CRNP, is extremely competent and practical at the same time). Our nurse, Heather, took care of all of Karen’s needs during the infusion process, platelets and saline, blankets, BP …crap BP 102 / 50.
Consult Megan. Another BP 107 / 56. So, the clock ticks as the saline drips.

“…I know you’re in there, you’re just out of sight
Time passages…”

The little process from departing from home to “are they going to admit Karen tonight or sent her home” covered seven plus hours. The post infusion blood work showed that her platelets count had only risen to 28 (Monday’s post-infusion count was 68). This was for us a bit alarming as well as disappointing. However, following ‘catch and release’ protocol the decision was to let her go home with the Hopkins Urgent Care numbers in my hand.

End Thursday. Hello Friday. Hello October.

“…What goes up, must come down
Spinning wheel got to go round
Talkin’ ’bout your troubles, it’s a cryin’ sin…”

Unfortunately, the converse can be true as well. During the years of fighting taste issues from the various treatments – we have had our last ditch resort of mixing a concoction of vanilla Ensure High Protein, chocolate Carnation Breakfast drink, chocolate and vanilla ice cream in a blender full of ice. The objective of the ice is chill the mix since cold seems to be less offensive to the taste buds than warm. The contrasting flavor choices is to mute the overall flavor of the mix. Usually all people hear is ice cream for meals; so being me, suffice it to say the color & texture of mixture going down ain’t very different from it coming up.

Karen did manage – much later – to eat almost 1/2 of a muffin with peanut butter and subsequently, a small bowl of elbow macaroni in 1% milk. Pain management and eating are challenges right now complicating the fundamental treatment for the disease.

“…In your head, in your head
They are cryin’…”

So, one of the things I glossed over in the Thursday discussion with the CRNP is that she ordered a CT-Scan. Karen and I always kinda find it funny that when medical personal are looking at the possibility of a stroke they never mention the word. Blurred vision? Headaches? Weakness? Speech? B But to be fair, Meghan is doing due diligence, hence, despite rather intense leg pains, nausea and weakness, Karen went to Hopkins Green Spring Station for the Head and Chest CT. No sign of stroke or lung infection. Virtue of MRI versus CT for diagnostic value to be discussed another time. CT is mercifully quick when your body is subject to a multitude of miseries.

Home again … the waiting.

Song lyrics. Six in the two day blog. Just a reminder that aside from trying to capture the mood of the moment, it was designed for reader to show ..hey Karen thinking of you without trying to find the ‘right thing’ to say. Look them up, if your memory is like mine. All in all just for fun.

Life goes on. To all travelers – best wishes.

Michael

Day +4954: Transfusion, transfusion…

Sep 27th, 2021 by

“…Oh, nurse I’m gonna make a new resolution…”

Karen is currently napping. She had a very long day at Hopkins. Her morning blood work showed that her platelet count had dropped to ten. Bad. The general malaise has persisted accented by body spasms and leg, butt, and bone pain. None of this is cleanly attributable to chemo, leukemia, gvhd or the grains in the hour glass (Age).
In discussion with Dr. Gojo, all of this and the other usual topics were discussed including potentially shifting to a 7 day Vidaza cycle versus 5, the possibility of the DLI; however, what was most relevant was establishing a Monday / Thursday monitoring schedule at Hopkins. Chemo cycle two really seems distant right now.

“…I’m hungry and the hunger will linger
I eat sixteen saltine crackers then I lick my fingers…

Dr. Gojo set Karen up for a transfusion of platelets today. That in itself was a land mark, since Karen has avoided transfusion since the bone marrow transplant.
We went to the infusion center where while waiting to be treated, she a severe bout of spams. The techs and nurses at Hopkins are super. An infusion of saline was also coordinated to offset her low sodium count and hopefully reduce the likelihood of spasms for a bit. In addition to her current anti-viral script, a prophylactic antibiotic course (Moxifloxacin) was added. Dr. Gojo is holding off on a course of anti-fungal for now.
Karen’s nurse, Brittany, was super. She was personable, caring and professional – she administered infusions, did the post transfusion blood draws, provided Karen with multiple sets of heated blankets and as suggested that Claritin may help with Karen’s current pains and aches. Additionally, she provided Karen with a handful of packs of saltines which turned out to be lunch.

“…Oh, I wonder, wonder who, mmbadoo-ooh”

Thursday is another day. During the day Karen remarked to me that they (her doctors) didn’t comprehend how bad she felt and that having 27 chemo cycles behind her, this was different. There a lots of questions with no answers yet.

Three songs imbedded per standard.
Michael