Reaching out to a Community of Support

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Well, I don't think that I'll ever look at having blood work done as ever being "routine" again.

I hold my PCP in high praise for her doing her job quite well and catching my condition early. It's January 2020 & I'm going for a 3 month follow-up appointment for blood work done the week prior. The good news is the goals set forth were achieved....lowered my cholesterol & increased my iron. The bad news is I'm being told, for the first time ever, that my red, white & platelet counts were ALL Low and that I need to see a hematologist. I was stunned, shocked and I knew this was an indicator of something far more serious. Just how serious, I'd soon find out. I got three hematology referrals from my PCP's assistant & set about my business.

I checked that the providers I was referred to are within my insurance network and prep a notebook with their contact info. I have been fortunate by being able to absorb things & pursue the needed medical attention & testing without delay, hinderance or procrastination. I've also been lucky &/or blessed by having a great family at my job that supports me & provides me with some great advice. A colleague mentioned a hematologist's name, one of my 3 referrals, from her personal experience, not too long past, so I took her advice & scheduled my appointment. So, for Valentine's Day I literally wore my heart on my sleeve having my first hematologist blood draw & after my initial consult they scheduled me for a chest CT scan.

Enter insurance delays, as several weeks elapsed with them needing more info from hematologist, which I relayed. Then to have insurance deny authorization for the scan, even though I'd be paying for it as deductible, but it was authorized after resubmission. CT chest done in mid-March amidst CoVid-19 lockdown. Follow-up with hematologist reveals same low blood counts, but also small cells size. CT scan reveals mild emphysema from my years of smoking. Thank God I've quit. How I only wish one of my earlier quits had lasted. I have reprimanded myself repeatedly over this, but I must now stay foward thinking & positively focused. I now have a bone marrow biopsy scheduled for early April.

I have now experienced discomfort. No, it wasn't the poke your brain CoVid-19 test, but the discomfort of my first bone marrow biopsy. Quite sore & a little gimpy the next day, but otherwise fine. A week later I meet with the hematologist & the biopsy results show the source of my low blood & platelet counts. I was diagnosed with myelodysplastic syndrome (MDS) with all 3 blood factors low & marrow producing immature cells & showing a genetic mutation in my chromosome strands within my marrow. I'm told I will need a bone marrow transplant & referred to Moffitt Cancer Center in Tampa.

Two weeks later, I'm ready for my initial Moffitt consult. Since leaving my hematologist's office, I've researched my condition, MDS. I've read several relaible medical sources' info on the condition, bone marrow transplant protocol and alternative treatment options. I'm ready. I've done my homework. This is my life we're talking about here & I'm scared to tears repeatedly. Enter again, that great family of folks I work with. I'm a Facilities Maintenance Technician at a Catholic high school. Let's just say it's my second coming into a career path, post the Great Recession. The day before my consult a priest on campus offered to hear my confession & gave me the Annointing of the Sick sacrament. I am so lucky & blessed to have such wonderful folks around me, to support me. Again, I cry. I am scared.

Before I continue, allow me to briefly digress in order to explain a few things. First, let me explain what MDS, myelodysplastic syndrome is. The easiest & most accurate explanation is that MDS is a pre-cancer, blood cancer that affects & attacks the bone marrow. This results in abnormally high &/or low blood cell &/or platelet counts, excessive sideroblasts (immature red blood cells permeated with iron) present in the marrow & possible marrow genetic mutations. It is an acquired illness that can be treated or tricked into normal states using blood transfusions, chemotherapy &/or radiation. The latter poses an issue as it also is a related cause of MDS. The others are only temporary fixes. The only cure, with a 60+ % cure rate is a bone marrow transplant. Left untreated MDS can become leukemia. Secondly, those of you who know me best or very well, know that I am not a person seeking a free ride nor a handout. I have worked hard for all the things I have gotten in my life. In fact, I have worked 7 days a week for the past 4 years. This has been necessary to offset low income between 2014 - 2016 and to hopefully earn at least some semblance of my prior career field salary. Yes, I can use whatever help you might be able to give. Prayers, positive vibes and whatever donation anyone can make will surely help me to get some of my portion of medical bills paid. You can also donate HCT, which can help to save somebody's life, like me. Lastly, the transplant & recovery process are more a marathon than a 40 yard dash. Extensive testing of all bodily systems/organs will initiate the process. Transfusions of corrective blood components will prepare my body for limited rounds of high dose chemotherapy in order to kill my failing marrow & eradicate any cancer cells. Transfused donor HCT are then introduced into my system & closely monitored as they mature into healthy marrow. This process takes about 2 weeks. I'm under close observation & supervision, including caregivers, for up to 100 days from transplant date. The key being avoiding infection & rejection while regaining my strength. Thus why I put my faith in God, for with His grace & your prayers I'll make it!

So, back to late April when I've been blessed & supported as I head off for my consult exam appointment at Moffitt Cancer Center. I know of Moffitt. Its stellar reputation in cancer treatment & care. I know friends who have worked there. And most regrettably I know of it from partaking in one of their Tobacco Cessation Research programs back in 2015. Yeah, just imagine how much & many times I've chastized myself for not making that quit last. Who knows....maybe I wouldn't be here writing about MDS & awaiting a bone marrow transplant?? Quit!! That's all I can say. QUIT!! Ok, scream! Keep trying till you do quit for good. I pray your habit doesn't hang on & rebound as mine has often done.

So, I recall driving to Moffitt that sunny, lockdown morning. I called my local radio station & asked if they'd play Trademark for me. A very nice inspirational instrumental 90's song. I never did get to hear it though. Perhaps it might've helped strengthen my emotional state which became even more so fluid as I crossed Tampa Bay. I always love trying to maintain driver's focus, while actually trying desparately to regain one's composure. Just gimme a few tissues & I'll get it together. And so I did. Meeting with Moffitt went well. Diagnosis & prognosis both confirmed. You've got MDS & you need a bone marrow transplant. I discuss alternative options & come to understand that some of those will be used as part of my conditioning pre-transplant. Looking at the numbers, either Auto or Allogeneic, the cure, not treatment...not remission, the Cure rate sits over 60% given my condition & risk level. The silver lining of my intermediate risk level MDS diagnosis, is that I'm under 60, am showing no symptoms & my blast (sideroblasts) count is under 5. These factors grant me the time, 3 - 6 months approx., to get things in order for this to happen as smoothly as possible.

May & June literally flew by as I was still being my essentially working self, both at the school & my weekend condo timeshare resort gig. I was busy in my off hours contacting insurance, completing applications for grants, temporary housing and in order to build My Carelines page. I also coordinated caregiving between my son, Jeff Jr., being my primary caregiver M - F, my lady friend & other half, for the last decade+, Nory will be caring for me on weekends & my brother Noel providing interim breaks during his 4 day off cycles. Now, as to where this caregiving will be happening, is another story. Moffitt has their own outpatient temporary residency facility for their cancer patients, it's called Hope Lodge. However, thanks to CoVid-19 the facility was closed & repurposed for the healthcare workers to rest between shifts. My hopes turn to the Bone Marrow & Cancer Foundation's Open Homes Medical Stays, so I complete my portion of their application form & forward it onto Moffitt for completion & submission. Meanwhile, I'm having monthly CBC blood draws done by my hematologist. Moffitt has been doing their research, analyzing my blood & marrow, genes & DNA. I've been blessed, truly I have. The school's president had spoken with me the day before my Moffitt consult & told me not to fear as a longtime friend of his had a marrow transplant many years ago & he's fine. He assures me I shall be as well. The following week, when I saw him I thanked him for his support. I also inquired if he would ask his friend what illness did he have leading to the marrow transplant? He assures me he will.

His friend, Br. Mike, was my age ten years ago when diagnosed with MDS. I had the reassuring privilege to speak with my first peer supporter in early May. That was probably the most beneficial 2.5 hr phone conversation of my life. I had about 12 - 15 questions for Br. Mike which he answered throughout various points of our conversation. We share a commonality in faith & rearing locale & now a shared health condition. I think it's pretty obvious we both have new friends in each other. After we managed to provide a drive-through HS graduation ceremony, our Facilities duties turn fully to finalizing Summer electrical lighting & plumbing needs & we delve into painting throughout 3-4 campus buildings. We'll have things well in order, in advance of school's reopening??? I also have a 2nd Peer Support counseling conversation with a volunteer through Be The Match. Bruce's candid speaking of his ordeal, successful transplant & lengthy road to recovery was quite invalauble for me as well. Blessed indeed, but nothing's guaranteed. My son is determined a 50% match for me as a donor, yet my sister is not a suitable match for me. Moffitt launches NMDP donor registry search. Luckily, two possible donor candidates are identified. May God bless the fine folks who work at the National Marrow Donor Program (NMDP) & Be The Match. God bless those selfless donors who donate their plasma & HCT to help save somebody's mine. It's July 7th now, one year older & one donor has been selected, a very ideal match for me. Scheduling timeline is proposed, now it's up to the donor to confirm our timeline. I am so very happy, excited, scared & nervous all at the same time. It's happening! It's gonna happen! Am I ready? Will I be ready? Ready or not here it comes. I best be ready. It's now nearly July's end & my son turns 35. Happy Birthday Boogs! I Love Ya.

Outpatient testing now starts tomorrow for three days this week. Next week I have a transplant course via Zoom & follow-ups with my Moffitt doctors to review test results.If all goes well, Jeff will be in town by Aug 13th & I shall begin my medical leave on 8/24. I'll be CoVid tested that day. Then my central line will be inserted on 8/25 & I'll be admitted to the BMT clinic on 8/26 when chemotherapy will commence. Transplant Day Zero Scheduled for 9/1! May the Schwartz Be With Me!!  Follow my daily progress & updates by reading my latest Journal Entries! I Welcome Your Support by Whatever Means & Thanks for Following My Journey of Hope!!      Humbly Smiling & Faithfully Yours,  Jeff


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