Hello again, my old friends: hair loss and night sweats.
Taking a shower last night again felt like a scene from Stephen King’s Carrie or Firestarter. As I moved my hands across my head, my hair came off in clumps of patchy black and gray. I was so very thankful that I’d been keeping my head stubble-short.
Sleeping from 11:30 PM to 1:15 AM, I awoke to my T-shirt, boxers, and shorts wet straight-through in a cool, damp sweat. A “Ken-shaped outline” was in our bed sheets.
The last time I had night sweats, I was getting them several times a night at Virginia Hospital Center. and again at home. This has been my first at Hopkins.
I’m wide-awake again at 1:40 AM. I’ll try to sleep again in a bit, but I’ll definitely need to change my night clothes and our bedding in the morning. My pillowcase is covered in hair as well.
“All of the medications you’ll be taking post Bone Marrow Transplant may cause some GI distress.”
UNDERSTATEMENT: a single Imodium after six hours of diarrhea will cause me to be constipated for days. Cellcept (my immunosuppressant) causes frequent (near-constant) diarrhea. Anti-emetics (Zofran, Compazine, Ativan) cause constipation.
These wild swings between unrestrained diarrhea and days of constipation resulted in blood-streaked stool and screaming pain from my backside. So now I’m putting cream up in places I’d rather not and asking my oncology nurse for a steroid suppository.
In the midst of all this, I’d recommend carrying changes of clothes and adult diapers. NOTHING about this is pleasant.
I seriously thought I was going to pass out on the toilet from pain. This isn’t hyperbole or an exaggeration, Vicky was seriously concerned I was going to vagal from the screaming hemorrhoid pain and blood-streaked poop. 🤢
Fr. Patrick Besel is the local Roman Catholic priest assigned to Johns Hopkins. While he’s a member of the Archdiocese of Baltimore, he’s not affiliated with any Church or Order, but assigned directly to Johns Hopkins at their request. Conversations with him have always been very interesting, and always heart-warming.
Fr. Besel and I were talking about the “Rise of the Nones” last week. For the United States supposedly being a Christian nation, far less than half attend Christian services with any regularity. It’s become increasingly acceptable to self-identify as Agnostic or Atheist when we’re in the best of health and consider ourselves to be modern, rational people.
It’s odd then, that in times of our greatest fear, our greatest struggles, or our fear of own mortality that we still seek out people of faith. Fr. Besel tells me that even people who identify as Agnostic or Atheist still ask to speak with him or still ask that he sit and pray with them when faced with a life-threatening procedure or the risk of their own mortality.
I asked him how he could adapt and feel in the face of visiting so many cancer patients, performing so many Anointing of the Sick, Blessings, and conversations. He didn’t say much, but shrugged and gave me a beatific smile. He’s been a chaplain for a long time at a number of hospitals. When I tried looking him up in the Johns Hopkins Pastoral Care Directory, I couldn’t find an entry for him or his picture. I did find his predecessor. My heart of hearts tells me that chaplaincy in a cancer treatment center probably has a high burnout rate.
It’s been 13 days since my Bone Marrow Transplant. My bloodwork and lab results continue to nadir, requiring me to receive two units of Platelets the day before. I’ll probably need another unit or two tomorrow as well given my current trajectory.
Two close family friends have asked me to read Viktor Frankl’s Man’s Search for Meaning and practice visualization therapy. It’s been a frustrating endeavour. The logical and rational part of my mind screams “I can visualize rainbows shooting out of my ass, but that won’t make it true.” It does make sense however that the subconscious mind and body listens to our mental well-being and outlook. If I am of good-spirits, it makes sense that I will be healthier and better-equipped to deal with knocks to my health than being depressive.
And so it goes… I’m still here. I still persist. I pray that I can look back on these cancer entries with a beatific grin and the knowledge that “this too has passed.”
“Among patients given syngeneic transplants, actuarial disease-free survival at 7 years is 20%. The major causes of death were relapse of leukemia and idiopathic interstitial pneumonia. Among allogeneic recipients, 9 (23%) are currently alive, and actuarial disease-free survival at 7 years is 11%.”
Yesterday afternoon we got to witness what happens what someone suffers complications from Bone Marrow Transplant. We have one fewer BMT patient among our number today, but he did not go home.
I was admitted at the same time as a young man diagnosed with acute myeloid leukemia (AML). Yesterday we were talking with his wife, and he had a severe reaction to two platelet transfusions and a severe reaction to Vancomycin. He looks really rough, and he was dismayed that he didn’t lose his hair after Cytoxan and Irradiation only to lose his hair in patches this week.
He left the question dangling as he stared at the short stubble on my head. I was quiet for a beat and replied “I never expected to keep my hair. I still don’t. The day that Cellcept or any other drug they give me causes hair loss, I’m prepared to shave it all off.”
Cancer is hell. Anyone who tells you that Bone Marrow Transplants are easy isn’t being very honest with you.
During the storm, Jesus’ disciples cried out to the Lord in desperation: “Lord, save us! We are perishing!”This is a “de profundis” prayer. Do you know the de profundis prayer? It comes from Psalm 130: “Out of the depths, I have cried to you, O Lord. O Lord, be attentive to the voice of my pleading.”It is the prayer offered at the darkest times of life, when we feel utterly incapable of helping ourselves.
Perhaps there are some people reading this right now who feel themselves in this precise situation. Perhaps you’re reading these words from your hospital bed where you are recovering painfully from surgery, or where you’ve just received some devastating news. Perhaps you find yourself caught in a terrible, unrelenting depression. Maybe you’ve just lost a loved one, and you’re awash in a sea of grief.
If that’s you, then pray as the disciples did. Awaken someone who can help. Jesus sleeping in the midst of the storm is a very powerful symbol of God’s sovereignty over even the darkest and most difficult trials that life throws at us.
It’s been 11 days since my Bone Marrow Transplant on Thursday, June 20th.
MONDAY, JULY 1ST, 2019 (DAY +11)
It’s been 11 days since my Bone Marrow Transplant on Thursday, June 20th. My bloodwork results are at their lowest point (nadir) since coming to Hopkins, but I’m beginning to feel “bone pain” in my shoulders, hips, and femurs. I’m hoping this means my new bone marrow is being stimulated and I should see the numbers increase in the coming weeks.
Speaking with Dr. Bolanos-Meade and Dr. Swillen yesterday, the earliest a patient has been discharged has been Day +45. The average for Bone Marrow Transplants is around Day +65 (+/- 7 days). So far, they like my numbers and my progress, asking me to keep up our strict adherence to hand-washing, hygiene, and infection prevention.
Vicky bumped into the patient and her family across the hall this morning. She had her Bone Marrow Transplant 67 days ago, she’s going home tomorrow. I’m happy for her, but also a little saddened and jealous.
Mouth sores, rashes, and dry skin have been the biggest issues so far. I brush my teeth multiple times a day now and use Biotene to keep my sores and dryness in-check. My lips keep cracking, so I use Burt’s Bees (honey lip balm) to keep them moist and clean.
And so it goes… I yearn for that day when we get the good news ourselves, and when our homecoming is in sight.
So today is Day T+6, marking 6 days since my bone marrow transplant on Thursday, June 20th, 2019.All of my blood lab results continue to plummet, with the likely nadir being sometime in the coming week.Once it bottoms out, the new bone marrow should begin producing blood product and replace my own immune system, with my numbers slowly improving each day, allowing me to overcome my Mantle Cell Lymphoma.
It didn’t dawn on Vicky and I until today that my blood’s DNA is changing.Johns Hopkins will perform DNA tests of my blood on Day T+30 and Day T+60.The DNA should reflect the fading away of my own DNA and the replacement of my donor’s DNA in my bone marrow.The results of the DNA tests should be fascinating, effectively making me a chimera?!
Chimerism analysis has become an important tool for the peri-transplant surveillance of engraftment. It offers the possibility to realize impending graft rejection and can serve as an indicator for the recurrence of the underlying malignant or nonmalignant disease. Most recently, these investigations have become the basis for treatment intervention, for example, to avoid graft rejection, to maintain engraftment and to treat imminent relapse by pre-emptive immunotherapy. This invited review focuses on the clinical implications of characterization of hematopoietic chimerism in stem cell transplantation.
No real reason, just a wonderful song to sing to yourself when wide-awake at 3 AM after little more than 3 hours of sleep. This is my first night of insomnia since coming to Johns Hopkins. My mind is racing with thoughts of home, thoughts of the office, thoughts of family & friends all far from here. I am bursting at the seams to be anywhere but here.
I wonder how my orchids are doing on the windowsill. I am not entirely certain what I’ll be returning home to. I’ve resigned them to their fate in the hopes they may be well-cared-for during my brother-in-law’s infrequent visits.
I wonder how Amitabh, Sam, Andres and the rest of our team at the office are doing. I felt so far-removed from office life being at home this past year for 16 months of chemo that their “telepresence robot (laptop)” felt like a ray of warm sunlight on a cold afternoon. We truly do have a wonderful team at what was once Invincea and now Sophos. I hope that I return to the same wonderful team, but both our office and our team has been through so much?
My mind often returns to Brad, Christina, Kiyomi, and Toshirō, but I feel like a character in a Peter S. Beagle novel when I try to form the words. I feel like Prince Lir in The Last Unicorn when I say:
I’ve had time to write a book
About the way you act and look
But I haven’t got a paragraph
Words are always getting in my way
Anyway, I love you
That’s all I have to tell you
That’s all I’ve got to say
And now, I’d like to make a speech
About the love that touches each
But stumbling, I would make you laugh
I feel as though my tongue were made of clay
Anyway, I love you
That’s all I have to tell you
My mind bounces and aches at Mo, Heather, Onalee, Julia, and others who live, love, and struggle through their lives. Phoebe & Corky were as much a beloved pair as Kiyomi & Toshiro. My heart is still missing a piece since I heard of Phoebe’s passing. Mo and Geo were extraordinarily loving parents. Vicky and I should be so fortunate to be as loving a family to our Shelties as Mo and her husband were to theirs.
And so many other thoughts from the phosphor glow on the other side of your monitor screen. I feel caught and helpless here; an animal stuck in amber awaiting his escape into life again.
I can read about others. My heart can leap with theirs in joy or ache in compassionate sorrow, but there is so much I wish to do and to give thanks for once I finally leave this most terrible time and place. 💕✌
At 8:04 PM on Thursday, June 20th, 2019, I began the transfusion of an extraordinary gift from a donor I never met. Thanks to his or her loving generosity, I have an excellent chance to beat Mantle Cell Lymphoma.
I am so very thankful to our family, friends, and medical teams at Johns Hopkins and Kaiser-Permanente for making this possible! 💕✌🏻
Sunset at Johns HopkinsTogether at Johns HopkinsHickman Catheter Placement
T-7 DAYS UNTIL TRANSPLANT – Today’s Notes:
🏥Victoria and I checked into Rm 202 of the The Hackerman-Patz Patient & Family Pavilion at Johns Hopkins in Baltimore today. We’ll be here for the duration of our stay.
💢 Today’s procedure was the insertion of the Hickman Catheter in my right chest, next to my mediport. They tested it and verified I’m ready for my first chemo using it tomorrow.
😪 Vicky and I are both exhausted. Today was physically and emotionally exhausting. Know that our hearts and thoughts remain with Christina, Brad, Kiyomi, and Toshirō.
We’ll post more pictures and better explanations tomorrow. We’re both exhausted this evening.
When you join the military and surrender your rights under the United States Constitution to be replaced by the Uniform Code of Military Justice (UCMJ), you realize that if you enter a combat zone, people are actively trying to kill you. During my years served, I carried an M16A2 rifle and a 9mm sidearm.
When you’re diagnosed with an aggressive form of mantle cell lymphoma and about to undergo a bone marrow transplant, you’re told that the medical team will make every attempt to see you survive it, but that they want you aware of the risk before you sign the medical consent. Like Desert Storm, my cancer wants to see me dead.
I am a systems engineer by profession. I am logical man by choice and temperament. Unlike Han Solo’s oft-quoted “NEVER TELL ME THE ODDS!”, I actually PREFER to know the odds so that I can actively try to beat them, and rejoice when I do. This has served me very well in 20+ years of corporate and government contracting.
I fully intend to survive this ordeal, but at least I am walking into it with my eyes wide-open.
This week was overwhelming. It began with a bone biopsy and many more blood tests, followed by near-daily visits to Johns Hopkins in Baltimore for a battery of tests, classes, and paperwork. Yesterday we met with our Hopkins oncologist again, to sign the consent forms for the study, blood products, and to acknowledge the myriad risks throughout a bone marrow transplant and its recovery.
While chemotherapy and radiation therapy make sense to me as two protocols intended to kill fast-growing cancer cells at a faster rate than slower-growing normal cells, much of bone marrow transplants still reminds me of trepanning in how it’s performed, how it works, and all of the side effects and risks a patient need be concerned about. As the oncologist explained the process, risks, recovery, and possible life-long side-effects, I’m reminded of the analogy of “trying to swat a fly with a Buick.” Except maybe this is a swarm of flies, and the flies will most certainly kill you.
Being away from home, from family, and friends, is as heart-wrenching and overwhelming as any other part of this process. I truly hope that I’m able to keep my mental acuity and strength through all of this, and to push myself for a quicker recovery and return home. Having gone through the last 16 months of chemo, with some of it being very strong and having dramatic side-effects, I think I have a reasonable idea of what to expect when the oncologist and team explained all of the drugs, risks, and side-effects. I hope I’m able to look back on this in a month and find it true.
I don’t know what I can say. This week had a lot to take it, and the visuals as I toured the oncology floor and patient rooms didn’t dissuade me or put my mind at ease.
There’s a lot that goes unsaid about cancer. Most people are oblivious to it, or mythologize it based on soap operas and movies that use it as a terrible plot device without delving into the reality of it.
After 16 months of cancer and chemo, I wish that more patients had a voice and were heard in social forums over the din of memes and cat videos. It’s odd that we now feel so open discussing politics, but cancer remains a taboo subject and misunderstood by so many.
Visiting the Ambulatory Surgery Center on the 5th floor and then Oncology on 4th, I had a wonderful conversation with an older gentleman on the elevator. He asked about my mantle cell lymphoma, he told me about his acute myeloid leukemia, and he ended our conversation with “this too shall pass. One way or another, it will pass.”
I doubt our younger cancer combatants would have appreciated our conversation. As his hands jittered and he told me about his advanced neuropathy, we have to wonder if the treatment is sometimes worse than the disease. He could either cry or laugh at the lack of sensation in his hands and lack of motor control in trying to push an elevator button.
So tell me, truthfully. Be honest with that gentleman and with me. There is hope, and then there is truth, sometimes they overlap and sometimes it’s just about survival and persistence. Today, for that gentleman, it’s about persistence.
Many, many thanks to Sam for the very awesome “Hotwheels Haircut” courtesy of Headblade. My scalp is shorn and shiny again.
Honestly, that was kinda fun to shave my scalp with what felt like a Hotwheels car in my palm. I’m looking forward to using it each day to keep it bald, and using lotion with SPF to keep me from getting skin cancer in addition to my lymphoma.
Video from the first flight of our new DJI Mavic 2 Zoom with DJI Smart Controller:
Not my best video work, but my first time using the DJI Smart Controller and learning how to use 2 jog dials, one D-pad, and two joysticks to create a video using DJI Mavic 2 Zoom.
DJI Mavic 2 Zoom with Smart ControllerDJI Mavic 2 Zoom with Smart ControllerDJI Mavic 2 Zoom with Smart Controller
At this point, I’ve now lost track of how many full-body PET/CT scans have been performed on me since I was diagnosed with cancer. I’m almost certain that this will be my fifth time through the donut for a low-resolution and high-resolution pass, but it might be my sixth.
I am TIRED of getting my hopes up only to have them crushed. My soul cannot take any more raising of hopes only to have them dashed. With each time, Vicky cries when we’re told the news, and I try to remain stoic and to “be of good cheer.”
On Monday, I will AGAIN go through the donut for an hour or two as they scan from the base of my skull to my thighs to check for the metabolic signatures of cancerous tumors compared to my fasting basal metabolism of a body denied food, sugar, caffeine, or exercise.
No matter what I am told next week, I am trying to steel myself to the news. I would love to be told glorious news, but I won’t allow myself to falter at terrible news. The old tripe of having faith is getting long in the tooth now… faith in God hasn’t stopped the oncologists from telling me I have tumors for the past four PET/CT scans.
I am trying… but my soul is wearing down with each test and each delivery of the results.
I kept a written cancer journal for much of 2018, but stopped during my brief remission and second tier of chemo. With Johns Hopkins fast approaching, I’m back to keeping a written journal of my stats, drugs, intake, bodily activities, exercise, and effects/experience.
