As my time at Johns Hopkins in Baltimore, MD, draws to what we hope is a close, I’m taking some time to reflect on these last two years. Since being diagnosed with Stage 4 Mantle Cell Lymphoma (a Non-Hodgkins Lymphoma) last February, it’s been a trial and many heartaches. It certainly puts things into perspective. After four different chemo protocols and sixteen months of chemotherapy, finding a compatible bone marrow donor and getting a transplant at Johns Hopkins felt like a miracle.
What truly does feel like a miracle is that I had my bone marrow stem transplant on June 20th, 2019, and been at Johns Hopkins since without any major issues, infections, or complications. Most patients will get an infection or some issues after a transplant, and yet my only issue was a week of vomiting, dry heaves, diarrhea, and mouth sores. I was extremely fortunate to have no rashes, reactions, complications, or issues. Many other patients both younger and older than me weren’t so fortunate.
I credit some of my good fortune and health to my relative youth, determination, and medical science… but not all. Throughout this entire ordeal, we’ve been truly blessed to know so many praying for us, to have so much emotional, physical, and spiritual support, and our daily prayers and faith in God, the Holy Family, and Saint Peregrine (Patron Saint of Cancer Patients). We credit our faith, the prayers-and-support of our family and friends, and God for my good health, persistence, and recovery through these tribulations.
“Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have, you will never, ever have enough.”
― Oprah Winfrey
“Those blessings are sweetest that are won with prayer and worn with thanks.”
― Thomas Goodwin
“People complain about the bad things that happen to em that they don’t deserve but they seldom mention the good. About what they done to deserve them things.”
― Cormac McCarthy, No Country for Old Men
Our escape from Johns Hopkins to enjoy breakfast together with Victoria at Iron Rooster in Canton Crossing. We’d been at Johns Hopkins Baltimore for over a month since the week before the Bone Marrow Transplant and the 30 days afterwards. This was a warmly-welcomed respite from our hospital stay.
First Escape from HopkinsFirst Escape from Hopkins
It’s been 25 days as of this evening since my Bone Marrow Transplant at Johns Hopkins in Baltimore, MD. I’m roughly a third through my 60-65 day stay at Johns Hopkins.
These past few days have been rather difficult. Between a hemorrhoid late last week and a burning sensation (along with bloody sentiment) while urinating, many of my frequent visits to the restroom have been trying. Apparently the burning sensation is due to the BK Virus that many of us (80%) carry as a dormant virus that manifests itself when immunosuppressed due to transplants.
Aside from the challenging restroom visits, I’m feeling much better. My numbers are increasing and it’s been nearly a week since I last needed an infusion or two of platelets. I’m truly touched by all of the cards and care packages that Vicky and I have received while we’re here. I was nearly in tears today as I read a couple cards, and I had a wide grin from ear-to-ear reading Julie M.’s card. I love knowing fellow programmers and systems engineers as good friends and fellow gamers.
And so it goes… I’m still here. I persist. I am so eagerly looking forward to going home, take a real warm shower and sleeping on our own bed, and being reunited with Kiyomi and Toshiro.
Donald Van Der Woulde; my biological father, whom I never knew. He and my mother divorced when I was very young, and I have no memories of him.
Thomas Neal Foreman; my step-father; whom I knew “well enough and hardly at all.” My mom remarried when I was 5 years old, I still recall their wedding in Las Vegas, and it seemed to set the tone for many of my memories afterwards.
Benjamin Balogh, Jr.; my grandfather, whom I knew well and loved the most. My mother’s father taught me kindness, compassion, consideration towards others, thinking long and hard about our actions and their consequences, and providing for others. I am still trying to live up to his measure, and I know I fall short.
Ken ForemanBut then you don’t know me as well as I do. I know very my faults, some I have tried to correct, and some I still allow to fester because I don’t have the health or desire to correct them just yet.
I still have some gaping wounds in my life that I really don’t care to discuss on Facebook.
Keith WancowiczA ship sails forward and leaves a wake wherever it goes. The battle scars of life are just that – scars – some heal over never to be seen or thought of again and others remind us every day of times past. If one is suppose to live in the present and not the past then looking at the circle with the loves of your life then I say you are a good father. Faults do not detract but rather make us unique just like every diamond is unique. We are human and hence flawed.
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.
“to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part, according to God’s holy ordinance; and thereto I pledge thee my faith”
…who could have imagined what these last 20 years have brought us. We have been through so much together, first as a couple, and later as a family. With great love, respect, humility, and thankfulness on your birthday from Ken, Kiyomi, and Toshirō.
“Over lunch today I asked Ed Meese about one of Reagan’s favorite jokes. ‘The pony joke?’ Meese replied. ‘Sure I remember it. If I heard him tell it once, I heard him tell it a thousand times.’”
“The joke concerns twin boys of five or six. Worried that the boys had developed extreme personalities – one was a total pessimist, the other a total optimist – their parents took them to a psychiatrist.”
“First the psychiatrist treated the pessimist. Trying to brighten his outlook, the psychiatrist took him to a room piled to the ceiling with brand-new toys. But instead of yelping with delight, the little boy burst into tears. ‘What’s the matter?’ the psychiatrist asked, baffled. ‘Don’t you want to play with any of the toys?’ ‘Yes,’ the little boy bawled, ‘but if I did I’d only break them.’”
“Next the psychiatrist treated the optimist. Trying to dampen his out look, the psychiatrist took him to a room piled to the ceiling with horse manure. But instead of wrinkling his nose in disgust, the optimist emitted just the yelp of delight the psychiatrist had been hoping to hear from his brother, the pessimist. Then he clambered to the top of the pile, dropped to his knees, and began gleefully digging out scoop after scoop with his bare hands. ‘What do you think you’re doing?’ the psychiatrist asked, just as baffled by the optimist as he had been by the pessimist. ‘With all this manure,’ the little boy replied, beaming, ‘there must be a pony in here somewhere!’”
– excerpted from How Ronald Reagan Changed My Life by Peter Robinson
Enjoying a crab cake sandwich with a creamy chocolate-avacado dressing followed by a chocolate mousse with German ice cream. So VERY thankful to Vicky for a wonderful treat yesterday before IV Chemo begins today… some joy before some sorrow? 💕✌
Blessed to be together as family… We are truly thankful to you, our family and friends, and to God… we have so much to be grateful for, and cannot thank you enough. We love our family & friends!! 💕🐾✌🏻
With heartfelt thanks and gratitude to Wally’s Smile! 💕🐾
Ken and I are preparing to go to Johns Hopkins for 3 months so Ken can undergo chemotherapy, radiation therapy, and a bone marrow transplant (BMT) in treatment of his Stage 4 Mantle Cell Lymphoma (MCL).
While we can’t bring our two beloved furchildren, Kiyomi & Toshirō, with us to our hospital stay, Wally’s Smile and our puppies’ likenesses will be staying with us the entire time in the hospital. Ken & I will be drawing great appreciation and warmth, missing our little family, but keeping them in our hearts.
Ken and I cannot thank you, and all of our family & friends enough. Everyone has been so thoughtful, generous, and supportive during this ordeal.
Ken and I are blessed to know you as our friends and family. From the bottom of our hearts, thank you!
IV Chemotherapy is difficult: physically demanding, exhausting, and with a list of side-effects depending on your mediport, oncology hygiene, and the effects of the chemotherapy drugs on your body. Rituximab, Cyclophosphamide, Doxorubicin, Vincristine, Prednisolone, and Cytarabine were all prescribed to me over 6 cycles from February 2018 through June 2018. They were each administered through a mediport placed in my chest, which I would receive in both in the oncology lab and at home using a portable IV pump.
Prior to my chemo, my wife and I took a couple of seminars on chemotherapy and intravenous (IV) line care. My wife(Vicky) is already a licensed and registered nurse with multiple certifications in critical care, advanced life support services, and drug administration, but we still attended the courses to see what we’d learn about cancer care and chemotherapy administration. I’d recommend all of the classes and seminars available to you if you’re about to go through the same. I can’t say I’m looking forward to Hickman Catheter Care next, but it’s necessary for my stay at Johns Hopkins. While I attended several classes and seminars on intravenous and intramuscular hypodermic needle injections, I still cannot self-administer but need my wife to do such things for me while I look away.
Since Vicky and I will be staying at Johns Hopkins for a while during the chemotherapy, radiation therapy, bone marrow transplant, and months of recovery, we’ve begun preparing ourselves for the long stay. We’re both bringing our laptops and tablets to keep us occupied for the months of hospitalization. I’ll be bringing my Kindle Oasis and Nintendo Switch in addition to my 17″ Razer Blade Pro 4K. While I won’t be able to play or practice on a piano keyboard, I can still use and play with FL Studio on my Razer Blade Pro. Vicky will be using her MacBook Pro heavily and reading on her iPad.
My oncologist and transplant coordinator tell me that for 2-3 months I’ll mostly be “out of it” and in little condition (or with little desire) to work remotely or do anything much. I really can’t imagine being that mentally and physically incapacitated for that long, even if with pain management and medications. Much of what you see on Facebook, on this blog, and on my wiki, are my efforts to prepare myself for keeping busy while away-from-home and stuck in a bed. I am truly hoping to keep myself mentally stimulated, engaged, and making the most of my downtime by reading, engineering, gaming, and learning mindful meditation.
Vicky and I have begun organizing, inventorying, and packing 3-months of supplies into bins with heavy-duty handcarts to move them. Once we’re done preparing, I’ll take pictures and post them along with our inventories and checklists. Maybe other cancer patients or caregivers might be able to make use of our lists and preparation? If nothing else, I’m impressed with how prepared and methodic we’re approaching this.
Of all that is going on, it is our two Shetland Sheepdogs, Kiyomi (清美) and Tōshirō (俊郎) that we’re going to miss the most. Our two beloved pups will be staying with close friends while we’re away from home. Thankfully Chris and Brad also have a loving family of Shelties, and our two will feel at home among their family. It is truly going to be difficult for Vicky and I to be away from our little family together with our two “fur-children.”
And so it goes… I hope to emerge on the other side of this healthier, wiser, and in complete remission. I hope this ersatz cancer journal and my rambling thoughts on how I dealt with and survived cancer will be use or hope to others?
Gallery (click any thumbnail to enlarge)
Administer IV Chemotherapy via Mediport
Home IV Chemotherapy via Mediport and Portable IV Pump
Family Bible & Rosary of Victoria & Kenneth Foreman
In the coming month, I have multiple bone biopsies, full-body PET scans, numerous blood tests and CT scans, and the various tests (pulmonary, cardiology) in preparation for heavy chemotherapy and whole body radiation therapy. While I am no stranger to chemotherapy, this will be a much higher dosage in combination with radiation as my oncology team tries to wipe out my cancer and immune system so I can receive a bone marrow transplant (BMT).
For the past year, I did several months of R-CHOP (also known as the Nordic Protocol) where I received heavy doses of chemotherapy via a mediport in my chest. Rituximab, Cyclophosphamide, Doxorubicin, Vincristine, Prednisolone, and Cytarabine were all prescribed to me over 6 cycles from February 2018 through June 2018.
After 6 cycles of R-CHOP, I was found to be in remission after verification using two full-body PET scans. I opted for three years of Rituxan (Rituximab) therapy as my maintenance chemo rather than undergoing a bone marrow transplant (BMT) since I thought it would be easier and less traumatic for me and my family. Little did I know that my remission wouldn’t even last three months, with my cancer returning before the end of the third month.
Family Bible & Rosary of Victoria & Kenneth Foreman
So I was started on 560mg/day of Imbruvica followed by 440mg/day of Venclexta as my second-line of daily chemotherapy since my cancer was no longer responding to Rituximab. The Imbruvica had little effect on me, about as benign and well-tolerated as Rituximab.
Venclexta was far harder on my body, with many of the same side-effects as what I experienced with R-CHOP earlier. By January 2019, I would need to have my blood drawn every 3-4 days in order to monitor my white blood cells (WBC), platelets, and Neutrophils. Almost once a week, I would need to stop my daily Venclexta and start daily Zarxio (bone marrow stimulant) to allow my WBC, platelets, and neutrophils to recover for 2-3 days before resuming Venclexta again.
And now I’m preparing for the massive amounts of chemotherapy and radiation so that I can receive a bone marrow transplant via a Hickman catheter while I receive my chemo prior using my chest mediport. I’ll be staying at Johns Hopkins Baltimore with my wife for 2-3 months during the procedure and recovery.
Everything you see here with my recent activities in reading, technology, toys, and more are all preparation for my time ahead. These are all things I wanted to do to keep my mind off of the ordeal my wife and I are experiencing, and to stay mentally engaged while struggling to overcome this cancer.
