I think my cognition and mental acuity has improved since peak chemo and radiation, but I still find massive disconnects between my interior dialog and what I type on the screen.
In my head, I think fully formed and discrete sentences. As someone who scored nearly an 800 (perfect score) on the SAT Verbal, I prided myself on my spelling, grammar, and syntax.
Since nearly 4 years of Chemo on an equal number of chemo protocols and radiation therapy, I find that what I think is not always what I speak or what I type.
I’ve been trying to build buffers and safeguards into both my email and my web browsing. I use Grammarly and Microsoft Editor heavily, but sometimes I overlook or ignore the errors when it warns me “what you typed doesn’t make sense.”
I really need to slow down, type, read what I typed, take a deep breath, pause, and READ. IT. AGAIN.
February 4th, 2018 – First Round of IV Chemo for Stage 4 Mantle Cell Lymphoma
803 DAYS AGO 115 WEEKS AGO
26 MONTHS OF CHEMOTHERAPY AGO
Apparently, Kaiser-Permanente has been keeping track of my chemotherapy protocol, how many months it’s been since my first chemo, and told me today is the “26th Month Anniversary” since beginning chemo at Virginia Hospital Center on February 4th, 2018.
Today (17-Mar-2020) marks 26 months of chemotherapy since I was diagnosed with Stage 4 Mantle Cell Lymphoma. I’ve lost over 40 lbs and most of my body hair since this picture was taken, but I’m thankful to be with you here today.
The IV clinic felt surreal today, with every nurse gowned up and practicing extreme hygiene and distancing, all of the patients wearing N95/N99 masks at all times and practicing distancing. I wasn’t sure if it was a hospital or a scene from a Stanley Kubrick movie.
Another Day of Chemo at Kaiser-Permanente (Burke, VA)
I fall to my knees and thank God for Victoria being by my side and my constant companion these last two years. What an incredible journey this has been… and the journey continues!
Another Day of Chemo at Kaiser-Permanente (Burke, VA)IV Chemo at Kaiser-Permanente (Burke, VA)
Another Friday, another month of IV Chemo…
This time we’re at Kaiser-Permanente in Burke, VA, since Tyson’s Corner, VA, has Coronavirus patients. 🤧😷🤒
All of the local Oncology and Infusion patients are going to Burke now, with fastidious protocols for staying protected and practicing social distancing. ✌🏻
Thankfully, I’m video-conferencing more from home to meet with my primary care physician (Dr. H.A. Nguyen) to discuss my current health, various issues (cold, congestion, nasal drip, sinus, diarrhea), and to avoid going into his office unnecessarily and being exposed to others during a very active cold & flu season.
Video Conferencing with Dr. H.A. Nguyen
Every Friday, I’m undergoing my traditional immunotherapy and chemotherapy protocols to keep my mantle cell lymphoma diminished while we monitor and research the next steps…
IV Chemotherapy every Friday
On Friday, February 7th, 2020, we met with Dr. Shalini Dogra, my oncologist for Kaiser-Permanente in Tysons Corner, VA. Vicky and I were discussing my cancer and health issues over the past few months, our current issues, and asking where do we go from here?
CURRENT STATUS:
Diagnosed with Stage 4 Mantle Cell Lymphoma (Code C83.18 MANTLE CELL LYMPHOMA, MULTIPLE SITES LN). Being treated using the R2 (Revlimid/Rituxan) protocol
Diagnosed with lymphedema (edema, swelling of the left leg) which will take time and exercise to recede to normal size. May be treated using Lasik, but treatment would cause many other problems and side-effects given my history and current medications.
Diagnosed with radiation-induced proctitis (colitis) in the sigmoid loop of the lower colon. Being treated using Carafate enemas to reduce bleeding, Lomotil to reduce diarrhea, Oxycodone to reduce severe abdominal cramps.
Diagnosed with viral cold or flu of the head and upper chest. Being treated using an Advair Inhaler twice/day, Zyrtec in the morning, Benedryl at night.
Diagnosed with neutropenia and immunosuppression. Continuing to monitor, receiving blood product transfusions when critically low, receiving Zarxio as needed to stimulate bone marrow production.
NEAR-TERM TREATMENT:
My entire immune system has been reset and needs to undergo a complete vaccination history from birth to adulthood. Influenza vaccine was received in October 2019. Childhood (6mo age) vaccinations now required once my neutrophil count (immune system) supports introduction of dead or live viruses. Will need to monitor neutrophils weekly and receive vaccinations as necessary for next 16 months.
Johns Hopkins and Kaiser-Permanente would like to perform a full-body PET scan (identify existing cancers, tumors, any new ones) and a bone biopsy. Johns Hopkins would like to perform DNA and Blood Chimerism analysis to see how much of my immune system is original and how much is from my donor. The last chimerism analysis (3mo post-BMT) was 100% Donor.
Seattle Cancer Care Alliance (SCCA) recommended and Kaiser-Permanente agreed that my mantle cell lymphoma is responsive to targeted radiation therapy and R2 (Revlimid/Rituxan) chemotherapy. I am to undergo both until the cancer is eliminated, maintained, or progresses (and requires further intervention by NIH and Seattle Cancer Care).
LONG-TERM TREATMENT:
My prognosis for the success of CAR-T therapy was 10-15% given its history with mantle cell lymphoma patients. Kaiser is impressed that it was unnecessary and that lymphoma reduced due to targeted radiation therapy and Revlimid/Rituxan chemotherapy.
I am to undergo R2 (Revlimid/Rituxan) as weekly IV and daily oral for the foreseeable future. Until the cancer is in remission or progresses, this is how I am to be maintained.
Targeted radiation therapy has been proven highly-effective given large inguinal clusters in October-November 2019. I will undergo further radiation to target aggressive clusters if necessary.
My lymphedema may take many more months or year(s) to resolve. Elevate left leg and exercise as much as possible.
My proctitis/colitis is being treated via Carafate enemas for bleeding, Lomotil for diarrhea, Oxycodone for pain, but 30% likelihood it may become chronic.
Kaiser-Permanente recommends no changes to treatment, medication, long-term disability, or status until March 31st, 2020. Kaiser-Permanente would like to base all further recommendations and prognosis pending near-term PET scan, bone biopsies, and responsiveness to Revlimid/Rituxan.
Our Last Day at the Seattle Cancer Care Alliance (SCCA)
Our heartfelt thanks and gratitude to the incredible medical team at Seattle Cancer Care Alliance as they took care of me for this past month. We learned much about my Mantle Cell Lymphoma and Colitis. We’ll be continuing my care as traditional chemotherapy once we return to Kaiser-Permanente.
Today is our last visit to the clinic and our last day in Seattle. We’ll be flying back home to Virginia tomorrow.
Once home again on Wednesday evening, we have a busy remainder of this week:
On Thursday, I need to see a gastroenterologist about radiation-induced Colitis as identified by my last full-body CT scan, and evidenced by my persistent abdominal cramps with painful bathroom visits. I’ll likely need a colonoscopy and its expected that I’ll probably be on antibiotics and Prednisone for the treatment of it.
On Friday, my traditional chemotherapy resumes. We’ll be spending the day at Kaiser-Permanente in the Oncology Infusion clinic as I resume R2 (Rituxan/Revlimid) for the treatment of my Mantle Cell Lymphoma. We’ll be following up to see if a Donor Leukocyte Infusion (DLI) is possible, if my original Bone Marrow Transplant (BMT) donor agrees to make additional blood donations.
The Seattle Cancer Care Alliance (SCCA) building in Seattle, WAThe Seattle Cancer Care Alliance (SCCA) building in Seattle, WA
It’s been 32 days since my “Birthday” (Bone Marrow Transplant) on June 20th, 2019. I can understand now why they say that each bone marrow transplant patient is different. We each handle the effects of heavy-dose chemotherapy, irradiation, immunosuppression, multiple transfusions, and all of the side-effects & symptoms differently. I can say, definitively, that your outlook and determination has a strong bearing on your recovery. I credit my relative youth and persistence to my quick recovery.
How we address ourselves and our mindset has an immense effect on our health and recovery. In the our daily and hourly thoughts where we grouse to ourselves that “we’re tired, we’re worn out, this is exhausting” the body internalizes our thoughts, our health and personal energy match our mental attitude. I have to catch myself in such times when I’m quick to complain or be frustrated with my health and recovery. I change what I tell myself, reminding myself that I love my family and friends, that they are rooting for me, praying for me, supporting me, and that I so badly want to go home to my family, friends, co-workers, and rewarding job again.
People ask me what to expect with a bone marrow transplant. I routinely ask oncologists and other patients the same questions. People are still asking me as patients, families, and caregivers struggling with their own journeys. This is is my attempt at answering those questions.
Chemotherapy is rough. You WILL lose your hair, it’s not a matter of IF but WHEN. If your body image has you loving your hair, try to find and do new things to make it easier for when that time comes. Whether it’s sharp and stylish “dew rags”, a jaunty hat, or a fierce shorn look, try to exert control over your situation and assert yourself rather than being unpleasantly surprised and overwhelmed.
My original hair loss due to maxi-dose Cytoxan involved a Stephen King-esque scene where my hair came off in massive clumps as I showered a week after my first chemo. I felt like I was going to have a heart attack in the shower as I watched my dark hair come off in clumps in my hands. I immediately screamed for my wife, we calmed each other down, and I shaved my head after that experience.
Immunosuppression and Irradiation are rough. You will vomit, dry heave, and have diarrhea.Prepare yourself for the worst. Prep a “puke bucket” that will be your friend and companion some days and evenings. Use anti-emetics such as Compazine, Zofran, and Ativan around-the-clock so that your body has a constant protection against nausea in your system. You will need to “titrate” (slowly scale yourself back) off these drugs once you know you’re over the worst of the effects of NVD (Nausea, Vomiting, Diarrhea).
Expect swelling, dry mouth, rashes, redness, and sores. Brush your teeth and use mouthwash often. I use Biotin as a toothpaste and mouthwash with a very soft toothbrush after every meal and before bed. I use Burt’s Bees and Farmacy Honey Butter on my chapped lips. I sometimes wear athletic compression socks to deal with my swollen ankles and legs. All of these effects are due to the chemo, irradiation, and immunosuppression your body is under.
And in other news….
My first 30-day Chimerism Analysis was taken last Thursday, June 18th. I’m eagerly awaiting the results and to discuss it further with my Johns Hopkins oncology team… hard to believe it’s been over a year since I was first diagnosed with Stage 4 Mantle Cell Lymphoma (MCL), but I truly hope and pray this bone marrow transplant puts me into a full recovery and remission.
Allogeneic hematopoietic stem cell transplantation (HSCT) is an effective therapeutic approach for several hematological diseases. Chimerism studies can be helpful to assess donor engraftment, detect early signs of graft rejection, and monitor minimal residual disease. Currently the most common method for monitoring chimerism following HSCT is by PCR amplification of STR loci followed by capillary electrophoresis. Prior to transplantation, multiple STR loci in both the donor and recipient are analyzed in order to identify loci that differentiate the two individuals. Informative loci are selected to calculate the percent donor and recipient present in post-transplant specimens. This is a rapid, sensitive, and cost-effective method for monitoring chimerism in patients following HSCT.
Imagine having a water balloon filled to the point of bursting, but instead of filled with water, filled with dark brown watery shite. Imagine having it shoved into your backside and ready to burst in a gush of explosive diarrhea at any time, at any place.
..yeah, it’s EXACTLY like that. Cancer and chemo drugs will strip you of your modesty and basic human dignity. Scott warned me of that, and it seemed a harsh nightmare of a lesson. I’ve been reminded of it thrice over the past year, the latest being this morning.
Cancer will strip you of your modesty and dignity. 😢
I’m going to need adult Depends for my time at Johns Hopkins. …I do not like that idea at all, but I’m scared it might be the least of my concerns among other side effects.
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.
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.
I learned the hard way last February just how quickly heavy-dose chemo results in hair loss. I made the mistake of not shaving my head until AFTER my first week of chemo. While taking a shower, it felt like a scene out of a horror movie (maybe Stephen King’s Carrie?) as giant clumps of hair came out in my hands as I attempted to shampoo my hair. It shocked me so badly that I called out for my wife, and then shaved my head that evening.
Not wanting to repeat that experience, I shaved my head and chest this afternoon in preparation for my upcoming heavy-dose chemo and whole-body radiation. Better to exert control over what little I can than to experience such unpleasant surprises.
Kiyomi, Toshiro, and Korg KROME-88Managing chemo pain with Kiyomi and ToshiroAdventures in CancerAdventures in Cancer
“We have a date for transplant for you: 3/11. Chemo prep will begin on 3/6. Your line will be placed on 3/5. We will begin evaluation tests with Kaiser first starting the week of 2/11. I am requesting that a PET be done first. I am planning for you to be come to Hopkins on 2/15 to begin evaluation tests with us.
Monday February 11, 2019 at Capitol Hill
8:00 AM – Full-Body PET Scan
Wednesday February 13, 2019 at Tysons Corner 8:30 AM – Echocardiogram in Cardiology 9:30 AM – Pulmonary Function Test in Pulmonary 10:30 AM – Sinus CT in Radiology 11:30 AM – EKG with nurse in Internal Medicine – Extensive Lab Work – Pick up Hickman Care Kit from Pharmacy
Friday February 15, 2019 at Baltimore 9:00 AM – Bone marrow aspirate and biopsy with sedation
2018: The Year of Battling a Stage 4 Cancer known as Mantle Cell Lymphoma (MCL)
2018 was an emotional roller coaster of a year. January began with me looking for a new job while on severance from my last job. After interviewing with several local and large IT companies, I was truly impressed with engineering team and management at Sophos. I received a written offer and accepted the job on Friday. I got a phone call from my primary care physician on Sunday. He asked if I wanted to hear serious news in the office with him or whether I wanted to receive it immediately, even if it meant over the phone. I told him I’d prefer to learn it as soon as possible, how I receive news wasn’t as important. He told me I had cancer, and that it was Stage 4.
I was admitted to the hospital the next day, and I spent the first couple weeks of February undergoing chemotherapy while at Virginia Hospital Center. I had a mediport surgically implanted in my chest for IV chemo and fluids, which I still have in my chest nearly a year later. For the next 4-5 months I underwent Maxidose R-CHOP Chemotherapy, also known as the Nordic Protocol. I lost my hair a few days after beginning chemo. I should have shaved my head before beginning chemo, but instead lost it in massive clumps while taking a shower. It felt like a scene out of a Stephen King movie, maybe “Carrie.” I’d highly recommend that other cancer patients about to begin chemo avoid this unpleasant surprise by preparing themselves first, shaving their head if they know the chemo will likely cause it’s loss.
In July, I was declared to be in remission. I was then offered to undergo a Bone Marrow Transplant (BMT) or to undergo Rituxan Therapy for the next three years. Since BMT sounded invasive and painful, I opted for what I already knew and was undergoing: three years of Rituxan Therapy.
Two months later, my cancer returned. My remission lasted less than three months. I never expected to be cancer-free for the rest of my life, but I was at-least hoping for 3-5 years of healthy remission before undergoing this ordeal again. In October, I began Imbruvica. In November, I began Venclexta. I’m now undergoing daily chemo of Imbruvica (560mg) and Venclexta (400mg) until I’m cleared for a bone marrow transplant. An unrelated donor was identified in December after beginning the search in October.
I was hoping to go to Johns Hopkins this month to begin my Bone Marrow Transplant. but my latest full-body PET scans show continued tumors in my abdomen and groin. So my chemo continues until I am cleared, with my Bone Marrow Transplant to hopefully begin in late February or March.
This past year has been a roller coaster of emotions, news, weight, hunger, chemo side-effects (nausea, vomiting, diarrhea, hair loss, lack-of-appetite/taste/hunger). I have been VERY THANKFUL for the outpouring of support from our family & friends. Our Facebook community of family, friends, and faithful has been supportive beyond words or imagination. Wally’s Smilebrought us hope and joyful tears when Vicky and I were at our lowest. There are so many people I’d like to name and thank from the bottom of my heart for their love and support this year.
And my team of friends and co-workers at Sophos have been extraordinary. I cannot thank Thomas, Paul, Patty, Andres, Louise, Amit, Mark, and Marcus enough. I am grateful every day for the kindness, consideration, compassion, and support my co-workers have extended this past year. They have gone above and beyond to support me and look out for me.
And so it goes… I still battle a terrible ordeal known as metastasized (Stage 4) Mantle Cell Lymphoma, but I am in the care of a terrific team of Oncologists at Kaiser-Permanente MidAtlantic and Johns Hopkins Medicine. I truly hope and pray to overcome it, and emerge on the other side of it as a healthier and wiser individual…. and paying it forward to others also struggling with this dreadful disease. 💕✌
Picture Gallery:
CANCER: Getting a blood transfusion for the 9th timeCANCER: Having a mediport placed in my chestCANCER: Life after ChemotherapyCANCER: Frequent Trips to the Hospital for IV Chemo
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