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Jeffrey’s MOST RECENT UPDATE

It's Now Or Never...My Time Has Come!
Jan 13, 2023

Greetings Friends & All,   A Happy & Healthy New Year (2023) to All! It was October of 2021 when I last updated my Carelines posts. Then, I had a 10.6 hemoglobin level, but it had reached its maxium beneit from the Atgam infusion back in June 2021. My level continued to steadily drop from 10-21 through 3-22. Then, by July 2022 my hemoglobin level had dropped to 7.5 & RN Heather Buffington had me scheduled for my first RBC (red blood cell) transfusion at Moffitt. My first transfusion since May '21. I have remained transfusion dependent since July '22. First, it was ... READ MORE

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It's Now Or Never...My Time Has Come!
Jan 13, 2023

Greetings Friends & All,   A Happy & Healthy New Year (2023) to All! It was October of 2021 when I last updated my Carelines posts. Then, I had a 10.6 hemoglobin level, but it had reached its maxium beneit from the Atgam infusion back in June 2021. My level continued to steadily drop from 10-21 through 3-22. Then, by July 2022 my hemoglobin level had dropped to 7.5 & RN Heather Buffington had me scheduled for my first RBC (red blood cell) transfusion at Moffitt. My first transfusion since May '21. I have remained transfusion dependent since July '22. First, it was 1 RBC unit every four weeks. Then that changed to every 3-4 weeks. Then every three weeks. Then it was increased to 2 RBC units every 3 weeks & subsequently that became every 2-3 weeks. Now as we entered the 2022 holiday season it became 2 units every two weeks. As I discussed with Dr. Komrokji back in July '22, we were attempting to get me to year's end in order to have my Aflac STD policy's criteria of one year policy in effect for prior cancer diagnosis' met. Well, we made it. Now, it's Jan. 13, 2023 & I've had my pre-transplant bone marrow biopsy done. My employment with DMS came to an early ending prior to the holidays in December. A rather callous & untimely dismissal from my perspective. I would've resigned by about now anyways. I've made the arrangements to secure my health insurance from FL Blue through the Healthcare Marketplace. I've also been busy checking with Aflac & updating all my insurance info. Moffitt has preliminary approval from FL Blue to go for transplant. While we await their final approval for the BMT, I've had my first transfusions of '23 this week following my bone marrow biopsy. I continue to search through the various non-profit organizations' websites for whatever financial assistance/grants that I might be eligible for. It's difficult financially as I'm only working my part-time job for now. I have had an initial SSI disability interview & I shall be applying for unemployment within a week & short-term disability by end of January. Moffitt should have insurance final approval, donor matches & the biopsy results by month's end. Then I shall have to undergo the three days of conditioning testing & I would anticipate being admitted for central line placement & my BMT by some point in February.

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Another Year...Where Does The Time Go!?!
May 23, 2022

Well, I should be happy to still be here & typing yet another post to my ongoing MDS story. It's now May '22 & that's a good 15 months since my last posting. Well, let me try to briefly bring you all up to date. About 3 months from my last posting, or basically about a year ago from now, my hemoglobin had bottomed out at 6.8! I held that number for about 2 1/2 weeks, each week my local hematologist's office asking me if I wanted to have a blood transfusion? I said no, initially & a week later as well. Then about three days later, I felt like I was literally pulling myself through the day. So, I decided to return to the hematologist's office a few days sooner than scheduled. Still reading 6.8 for hemoglobin, I finally accepted the suggestion of the blood transfusion. I was admitted to a local hospital for the transfusion & overnight observatiion. I was released the next day with a much better 8.7 hemoglobin rate. The following month, June '21, I was scheduled for & had the Atgam infusion therapy. Over four days, June 14-18th, I was infused with ATG over 4 hours of each day. I had some adverse reactions a couple of days...hives, swelling & chills. Nothing some more steroids & Benadryl won't help get rid of. I was relieved & cautiously concerned upon my discharge, but returned home happily. My concerns shifted to my ability to maintain a clean & hygenic home during & post infusion recovery. I found & made some work arounds which enabled me to keep things & surfaces clean & disinfected. I had resumed working & about 2 weeks after discharge I experienced more allergic reactions to the Atgam. One day shortly after arriving at work my hands, right first, then left followed, began to swell & hurt. They swelled to the point, I couldn't work & couldn't drive as I was unable to close my hands & grip anything properly. After my friend drove me to the ER & I waited until I nearly lost my mind (12 hrs.), I was finally given more steroids & Benadryl & sent home. It took four more days of bed rest, steroids & Benadryl to get me back to the point where I could do things more normally. I returned to work but as I would always tell people, I felt "Okay" but not normal. Things felt different. It felt like there was a thin viscous barrier between me & my normal or tactile feelings, like I was shielded from "full feeling". That took some time to get used to. I did my best though & I became increasingly pleased as each bi-weekly, then monthly lab appointment revealed higher hemoglobin levels. By October, I had reached 10.6! I was ecstatic! I need to better learn the wise words that my MDS peer, Br. Mike, has repeatedly told me. It's a marathon, not a sprint. Being ecstatic didn't last all too long. Neither did 10.6!!

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I Know, It's Been A Long Time
Feb 15, 2021

Happy 2021! What have I been up to for the past 6 months? Well, I was going to my hematologist for CBC evaluations monthly, at least for the first 3 months. I enjoyed seeing the Rays make it to the World Series & the Lightning win the Stanley Cup! It wasn't until November that my hemoglobin count dropped below 10.0. That prompted weekly visits for CBC evaluations and Procrit injections.  These 40k IUs injections are to help boost my red blood cell & hemoglobin counts. Yet, they haven't helped to date having had 8-10 injections & my hemoglobin count is at 7.9 presently. Happy 2021 everybody!! And much to my enjoyment the Bucs have won the Super Bowl. How about that! Tom Brady is truly an amazing QB. Since shortly after having begun the injections, I have been feeling fatigued by the end of each work day. My Moffitt hematologist,  Dr. Komrokji, had me undergo my 3rd bone marrow biopsy in January after our 12/30 meeting. Biopsy was done on 1/8/21 & we just reviewed results on 2/10/21. Got CoVid tested for 2nd time & still negative,  thank God! This biopsy hurt me too, more than the prior two. I had the same lab technician as my 2nd biopsy. I was able to request him when scheduling it with Moffitt. We came to the belief that my left posterior hip area is more dense than my right side. Technician had a difficult time obtaining marrow  samples & I have been hurting since with a slight limp. Hopefully  this too shall pass. The biopsy results show promise though. No further MDS progression,  no increase in leukocytes and prior indicated chromosomal mutations were no longer indicated.  Another lesser type was, but no "bad players" as Dr. K calls them. So I'm now on max Procrit dose, 60k IUs, over next 4 weeks. If no improvement,  then he is recommending that I undergo immunosuppressive-therapy using AGT & cyclosporine. I am hopeful, but guarded, in 2021. I do feel blessed and my prayers & best wishes go out to ALL folks dealing with any type of cancer or prolonged, life-threatening disease. May God speed your treatment & hopefully recovery.  May God bless you & keep you. Jeff

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Blessed & Continue to Hope & Pray
Aug 17, 2020
A little over a week since I met with my transplant doctor, Dr. Perez, and I still feel a bit of shock. True, I am happy & somewhat relieved, but I've only been given a temporary reprieve. In reviewing my biopsy, blood & other test results Dr. Perez feels that I am very lucky or blessed. It seems I maybe in the 3% of MDS patients that do not suffer symptoms. And while all 3 of my blood counts are low, 1/2 to 1/3 below the low minimal count, they haven't continued to drop nor has my blast rate increased from 1.5%. These are all basically the same as they were back in April. So my transplant has been postponed until hopefully there's a CoVid vaccine or until my numbers fall to warrant doing so. God bless me & all of us affected by CoVid.

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Back to Work...For Now
Aug 6, 2020

Well, I guess I needed a break from all the poking, prodding and testing done Tuesday through Thursday last week. It felt good being back at work, yet eerily odd at the same time. The reality of my situation looms as a much closer reality soon to be had. It is unnerving & daunting at the same time. Yet, I try to remain positive & not too fearful of what lies ahead. Though working everyday is quite tiring & leaves one little time to enjoy any lifestyle, one must appreciate the little things that help make it easier doing so (see pics of my work backdrops). So, I am now back at Moffitt having just concluded my psych eval tests. Dr Booth-Jones says I'm normal. That all my cognitive & memory skills are exceptional!! She don't know me very well, does she?? Lol ? Just kidding. She concedes though, that they're not acustom to working with patients such as myself. Typically, their BMT patients are more diminished mentally & physically due to underlying & preexisting conditions making them so. She also understands & can concur with my thought process as to coming out of this hopefully more energetic than I am even now. I do count my blessings, make no mistake. My age, early diagnosis by my PCP & hematologist, being of relatively good health & mental acuity. All these things I have to be very grateful for and having a scenic view from both my jobs. Faithfully yours.

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Biopsy & Final Testing Day 7/29-30
Jul 30, 2020

Well, I spent the whole day, Tuesday, at Moffitt having blood drawn, 17 tubes, & pulmonary function test, CT scans of chest & sinuses and meetings with my nurse coordinator, Regina, & social worker, Charlotte. I tried to shorten duration by trying to get imaging done during gaps between appointments but my 4 pm time was when I was called for CT scans. Long, kind of tiring day but all went well. Wednesday had me back at Moffitt at 6:45 am for my 2nd bone marrow biopsy. First was done by my hematologist back on 4/2. This one went smoothly, less discomfort than prior which was good. Glen and the team caring for me were great. It was scheduled for 7:45 am & I left Moffitt @ 8:30 am. Had to have a driver, in case of sedation, but I took the procedure with local anesthetic only, as done with first biopsy. So, my dear Nory & I got to enjoy some breakfast, relaxation, lunch & a late afternoon nap. That's a rare treat for me, typically working everyday. Today, I've had my EKG & Echocardiogram done succinctly. So, I've returned to the BMT clinic to possibly get my P.A. appointment done prior to its 1 pm schedule. One hour down & one to go as I wait & update my journal. Filled & reviewed varied treatment forms. Definitely kinda scary as each can remind you of the associated risks these treatments carry with them. Stay positive & believe fully that God will help see you through it all. Besides, with MDS there aren't any real lasting treatments than can provide substantial benefit or improvement of your condition other than a bone marrow transplant (BMT). Thanks to all my friends, colleagues & the fine folks at Moffitt for your support, kind words & help.  Jeff

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Let The Testing Begin!!
Jul 28, 2020
Plenty on my plate today. Starting at Moffitt at 8:15 for blood draw...about 20 tubes!! Meetings with Regina, my nurse coordinator, Charlotte, my social worker, Pulmonary Function (Stress) test & CT Chest & Sinus scan. Let ya know, how it goes!

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Jeffrey’s STORY

 

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 life...like 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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