Release is in sight! I’ve been through the valley, under a very merciful umbrella walking with the Lord, and with some absolutely fantastically wonderful joyful experiences in the midst of it. I’ve asked God for opportunities to use me, the ways He’s “fearfully and wonderfully made me” and the ways He’s taught me to live, and I know that others have prayed that exact prayer for me as well, knowing this is a unique place to be planted for a time. There are people I will relate to that many people cannot… There will be many people caring for me that would have no reason to care for me otherwise… There will be many people stuck with me that have no other choice… and I hope that I can be an inspiration to them, an encouragement to them, I hope that I can make their choice of occupation a joy to them because they know how much I appreciate what they are doing to help me (and the rest of us here) through something we disparately need all the knowledge they have, and all the time they’ve spent learning and gaining experience in understanding how our frail bodies can somehow endure incredible rebirth processes… The team here is amazing, and it has been wonderful meeting everyone from the nurses to doctors to maintenance to launderers to stockers to pharmacists to every kind of assistant to social workers to volunteers to other “inmates” to security and on and on and on… They have all done such a wonderful job making sure I am fully taken care of and probably slightly over-monitored. I just pray that I have been a joy for them to serve, because I appreciate so much what each of them has done for me… it’s very humbling for me to ring a bell and say “I’m sorry, but I just threw up in there, could you please clean it up for me.” Thankfully I wasn’t the “throw up” guy, and only lost my breakfast twice (so far) while I’ve been here…
So now that I feel pretty good, and my spirit wants to put pen to paper, I’d like to give an update on the last few days. Many times, I’ve been dealing with nausea and just a constant yucky tummy, which made it difficult to write or keep up with certain things. With low energy too, for a few days, I just mostly slept some of the best sleep I’ve had since we’ve had kids… It’s like sitting in the recliner at home, with the sun just warming your arm and legs, full stomach after lunch, ball-game in the background where the Packers are up by 49 at the end of the 3rd quarter so there’s nothing to worry about there, and I didn’t have to move an inch to get any little bit more comfortable to let my eyes slip shut for a deep afternoon nap (nobody jumping on my gut 5 seconds after I shut my eyes, no executive judgements to make on who was playing with green ninja first, no reminders that the trash goes out tonight…). I think those two days made up for about the last 10 years I’ve missed.
So, I think I left off on pretty much my best physically feeling day of the whole process (D+4). I felt so great coming off of the side effects of the nausea meds that got quite a bit of exercise in, taking walks outside, doing my walking-dance laps around halls, and hitting the Rhoads7 stairwell (144 stairs) 5 times that day to Toby Mac’s “Move (Keep Walking)” pace.
Now remember, White Blood Cell counts (WBC) and ANC are the numbers everyone is concerned with … “They will go to zero… don’t worry, they will get there... they always go to zero… everyone is at zero for at least a few days…” Can’t tell you how many times I heard that, from how many people, but it was always followed by “and when they start coming back up, everything starts feeling better real quick.” But, like I always do, I tended to ask everyone… “but what if they don’t go to zero?” Lots of different looks and reactions on that one, similar to “but what if I didn’t get wet walking in the rain.”
Absolute Neutropenic Count (ANC) < 1000 is bad, < 500 is really bad and there is a serious risk of infection and complications. That’s why we have to be isolated in this range with special precautions.
Hemoglobin and Platelet counts where covered to, but not to exciting, so I left them out of this general summary. Be happy to share with anyone especially interested though!
History:
D-1 (10/4) – WBC 5,700 & ANC 5,000 – Normal on my day of rest between Chemo and Stem Cells
D-0 (10/5) – WBC 10,600 & ANC 10,100 – Stem Cell Infusion day
D+1 (10/6) – WBC 12,500 & ANC 12,100 – Med regiments started, Compazine side-effects start
D+2 (10/7) – WBC 4,000 & ANC 4,000 – Compazine side-effects little worse
D+3 (10/8) – WBC 3,800 & ANC 3,700 – Compazine side-effects really bad, and got fixed.
D+4 (10/9) – WBC 2,500 & ANC 2,400 – Covered details in last post.
D+5 (10/10) – WBC 2,400 & ANC 2,360 – A little less energy this day, but not too bad. Still enough to walk and dance (which helped with the nausea, now that I was one tool down in the kit to control it). Did some walking outside and the stairs once, but nothing physically notable for the day. Highlight of the day was an opportunity I had with a student nurse. She took a training lesson on me got to hook up her first IV (I think) for my antibiotic drip. She did very well, and afterwards asked if I wouldn’t mind answering some questions she had to ask as part of her classwork. It was much more easy to say yes here since she had done such a good job, and I didn’t have much else going on the rest of the day, as opposed to the typical “please stay on the line to answer a few questions for our customer service survey.” She caught up to me walking the halls and got out her TWO surveys, and we started. It was a very pleasant discussion, and I think if ever there was an easier missionary opportunity in the world, I would be surprised. The surveys were great, and I think they were focusing on positive aspects that people must have seen in relation to how faith and community are powerful support structures for those in difficult times, and how open people are to them. The first survey spoke a lot about our relationships with our doctors, physicians and nurses; what our religious beliefs were; what kind of community support groups did we belong to, and how did they help us… Then the second survey was straight up how does your faith impact or influence how you make health care decisions. I was able to share about how our Christian faith influenced every decision we make, and involves all the communities of people we are invested it, and so through the scripted questions she asked me, I walked through the gospel of Jesus, how we seek guidance through Him in all of our health care decisions, even this one “was there ever a time your faith caused you to disagree with your health care provider’s suggestions?” I had the opportunity to use every miracle I could remember as an example to an answer to one of the questions, and even add in how I believe 1 Peter tells us how our faith can tie together our difficult times of suffering to becoming closer to God when we need Him the most. It was the best hour-long survey I ever took… No doubt – God lined that one up…
D+6 (10/11) – WBC 100 & ANC 100 – Boom! Big drop day… Low energy day, light nausea all day, lots of napping.
D+7 (10/12) – WBC 100 & ANC 10 – Waiting for zero… Same low energy, light nausea all day, spiking low-grade fever (considered very serious) a few times which cultures were drawn for. Met another inmate on a hall walk who was very nice and reminded me of my good friend Joe, who had just gone through a BMT a few years ago. It’s strange because I can imagine going through it with him now, that I’ve met Paul and he just reminds me so much of him.
D+8 (10/13) – WBC 100 & ANC 10 – Sleepy, yucky, feverish day…
D+9 (10/14) – WBC 100 & ANC 10 – Sleepy, yucky, feverish day… Highlight: Jas came to visit! What a blessing, just to have her here after so long, obviously… We got to snuggle and watch “This is Us” together. Cry a little, laugh a lot, and then…
D+10 (10/15) – WBC 400 & ANC 270 – Sleepy, yucky, feverish day… Highlight: My hair’s falling out… so weird, like I can’t even describe how it can be so weird. So Jas helped trim me up handsome as she could… And to top it off, the dreaded diarrhea started… arg… totally wore out the tile between the bed and the pot for a few days… (all good now though, whew!).
D+11 (10/16) – WBC 1,500 & ANC 1,150 – Good day, celebrating the ANC jump with Jas and looking forward to making the discharge requirements. Now just need to get fevers, poos and vitals lined out… Big requirement is to have ANC > 1,000 for two days in a row. Jas had to head back home today. Highlight: Had one of the sweetest nurses you could ever get and we talked a bit about families and faith. I can’t wait to talk with her more about the questions she has about God, Jesus and the Bible… She has about the sweetest demeanor you could ever imagine, and Jasmine loved her since the first time we met her on my Chemo day…
D+12 (10/17) – WBC 3,500 & ANC 2,830 – Had some serious talks with the discharge doc about what we got to get in line, and It’s looking like Thursday 10/19 is a possible discharge day.
Major work is done… Just need a little tune up to get me home… Hope to see you all soon!
My Unexpected Journey
10/9/2017 – Bone Marrow Transplant, Part 3
Writing with a clear mind, can’t wait to fill you in on all the things that brought me back on track by what I can only describe as the hand of God… Well, it goes a little something like this… About three days ago, Day +1 after the transplant, my meds were getting lined out and I began getting IV nausea meds. Around the same time, I had begun a slew of other proactive anti-viral/fungal/bacterial meds, one of which we were concerned about for the side effects and possible long term implications. Building gradually throughout those few days up until yesterday, were issues with my walking, which could be attributed to my stair climbing regiment that I had begun here, maybe that had something to do with why my ankle tendons were getting sore when I walked… issues with confusion and concentration, which I thought mild but grew in intensity, and thought it could have something to do with the chemo, or the process, or just being mentally stressed, but hard to figure out when you’re under the influence of confusion. It’s very hard to explain, but my best sanity measures were to do simple crossword puzzles and mind games because that was about the limit of my concentration and depth of thought. Otherwise, I felt rather like wandering around overwhelmed by everything from text messages to replying to an e-mail. Very strange… and issues with my vision which made near impossible toward the end to read my text messages or the food menu for ordering meals, even with my reading glasses on. It got to the point yesterday where I couldn’t walk half a block without sitting down on a bench to reset my legs. One side would get sharp tendon pains and cause my foot to flip outward at the end of my stride, and the other leg would cramp up, become stiff and my toes would curl up under and not release. It was downright scary. So after talking to Jas quite a bit about some of the meds, and deciding we were going to ask about replacing one antibiotic that might cause an issue like that. It was the middle of the night, and so before my next antibiotic dose I checked to see if my vision was any better, and it was. I got up to walk a bit, and I could do laps without cramping up. It was amazing! So I just so happened to be walking by the nurse taking care of me and began talking about the issue. We get to talking about what other meds I am on that I’ve never been on before, and one of the nausea meds is new to me… and it just so happens that she passed on my last dose to let me sleep longer instead of interrupting me in the dead of night for it, which is why I was able to see when I woke up! She put the pieces together and pinned it to the nausea med, seeing that one of the rare side effects is Parkinson’s symptoms, exactly what was going on with my legs. The rest of the day today, I have been at 100% back in action, puffing up the stairs, walking the street, was able to do some e-mails, text and call people without paranoia... total 180°. And it just so happens that I got a low-grade fever last night, which is treated very seriously with a weakened immune system, so I had to get checked and double-checked out for infections, and put on a different antibiotic, that replaced the one we were concerned about…
Days 3 to 5 are supposed to be the days of declining energy and blood counts. My energy level hasn’t plummeted yet, but my blood counts are dropping. Not technically at neutropenic risk yet, but trending down. And everyone keeps telling me, you’ll hit zero and be there a couple days, don’t worry, it’ll drop. So we’re waiting…
Days 3 to 5 are supposed to be the days of declining energy and blood counts. My energy level hasn’t plummeted yet, but my blood counts are dropping. Not technically at neutropenic risk yet, but trending down. And everyone keeps telling me, you’ll hit zero and be there a couple days, don’t worry, it’ll drop. So we’re waiting…
10/7/2017 - Bone Marrow Transplant, Part 2
Chemo down, Stem Cells re-introduced… Time to rebuild… Apparently, the next stage is the valley, the unpleasant one.
But what a great transplant day. Thursday morning Oct 5th, everything right on schedule, prep was very minimal to my surprise. I have been seeing other transplants around the halls; at this time, there are many more Allo’s than Auto’s (Allo is when matched donor cells are used, Auto is when you get your own back). The Allo’s have more restrictions and protections from infections, so there’s more suiting up than in my case. About 15 min beforehand, they rolled in a refrigeration cart with my stem cells bathing in liquid nitrogen (something I happen to know a little about…). As soon as the infusions doctors came in, they checked all the hookups and IVs, gave me the rundown of what to expect, and moved the stem cells into their hot-tub to warm up. Once they were warmed up to about a chill, they started pumping in my two bags worth. One thing we didn’t realize so long ago when we collected them, the fewer bags collected, the better. Not just because of the process of extraction, but because more bags means more preservatives with the stem cells, which have an effect when re-introduced. Blessed by that, it went very quickly, and I smelled/tasted the “corn chowder” that most people talk about. I was told by the nurse that came in that evening it was pretty obvious, though I couldn’t smell it at all anymore after the infusion was done. I did feel a little prickly tongue and back of my throat towards the end of it, but that went away as soon as it was done. Other than that, there was not much to it, very smooth and laid back, though incredibly important part of the process!!!
Yesterday, I would have liked to get an update out, but had some bouts with nausea that kept me pacing and uneasy throughout the day. It was difficult to concentrate on anything, and made eating my meals and getting my fluids in harder. The doctors arranged a med schedule to help, and it sure has. I feel much better now, not fighting nausea right now, and the bouts with hiccups seem to be gone too. I can feel my energy level going down, I get tired faster and feel like sleeping more, but I am still able to get up and active walking the halls, climbing stairs and sometimes going for a walk outside. Not neutropenic yet today (Day+2, which is counted from Day0 infusion day), and my blood levels are still in a normal range, but declining. Doctor says they should continue to decline here through days 3 to 5, and I should hit a rough patch after that, until my system recovers and my numbers begin climbing back up.
But what a great transplant day. Thursday morning Oct 5th, everything right on schedule, prep was very minimal to my surprise. I have been seeing other transplants around the halls; at this time, there are many more Allo’s than Auto’s (Allo is when matched donor cells are used, Auto is when you get your own back). The Allo’s have more restrictions and protections from infections, so there’s more suiting up than in my case. About 15 min beforehand, they rolled in a refrigeration cart with my stem cells bathing in liquid nitrogen (something I happen to know a little about…). As soon as the infusions doctors came in, they checked all the hookups and IVs, gave me the rundown of what to expect, and moved the stem cells into their hot-tub to warm up. Once they were warmed up to about a chill, they started pumping in my two bags worth. One thing we didn’t realize so long ago when we collected them, the fewer bags collected, the better. Not just because of the process of extraction, but because more bags means more preservatives with the stem cells, which have an effect when re-introduced. Blessed by that, it went very quickly, and I smelled/tasted the “corn chowder” that most people talk about. I was told by the nurse that came in that evening it was pretty obvious, though I couldn’t smell it at all anymore after the infusion was done. I did feel a little prickly tongue and back of my throat towards the end of it, but that went away as soon as it was done. Other than that, there was not much to it, very smooth and laid back, though incredibly important part of the process!!!
Yesterday, I would have liked to get an update out, but had some bouts with nausea that kept me pacing and uneasy throughout the day. It was difficult to concentrate on anything, and made eating my meals and getting my fluids in harder. The doctors arranged a med schedule to help, and it sure has. I feel much better now, not fighting nausea right now, and the bouts with hiccups seem to be gone too. I can feel my energy level going down, I get tired faster and feel like sleeping more, but I am still able to get up and active walking the halls, climbing stairs and sometimes going for a walk outside. Not neutropenic yet today (Day+2, which is counted from Day0 infusion day), and my blood levels are still in a normal range, but declining. Doctor says they should continue to decline here through days 3 to 5, and I should hit a rough patch after that, until my system recovers and my numbers begin climbing back up.
10/4/2017 - Bone Marrow Transplant, Part 1
Overwhelmed is the only way to describe the support and encouragement we have from our family, friends, work family and church family. Sunday, October 1st, the last Sunday I would be able to worship together with our small part of the body of Christ for a while, our church stood up for us in a amazing, beautiful and powerful way... from each song in the worship set (music is such a huge part of the way I experience God's presence and encouragement), to the prayer for us at the end, our church congregation continues to show what it means to be part of a church family. I've always had a tug on my heart when we have had special prayer to lift someone up during the service or send someone off, to get up off of my seat and lay hands on them through the prayer; unfortunately, I have always shied away from that prompting and just reached out my hand towards them from my comfortable safe pew seat. We certainly were grateful that we could arrange for a time for deacons to pray over us in our time of preparation and affliction; what a privilege to have church leaders so eager to come alongside anyone in their difficult times... but because of my past heart yearnings, I wanted any who felt the same way to be free to come forward, surround us, laying hands one on another to lift our little family up in prayer. Totally overwhelmingly, when Pastor Chuck graciously fit this into the service and invited anyone up who would like to come, there was not a person left in the pews... it brings tears to my eyes just thinking back to looking up and seeing everyone standing around us, hands on shoulders connecting us all together, and through many sniffles and tears, prayers lifted up for comfort, strength, support, encouragement, boldness, wisdom, skill, excitement, confidence, and on and on... truly overwhelming... I can't even describe how amazing it was... thank you church!
So, that leads us into yesterday, October 3rd, the preparation for transplant. It's the beginning of the process of the Bone Marrow Transplant, but the actual "transplant" day is considered the Stem Cell infusion day, which is tomorrow. As Jas describes it, there has been a huge amount of build up to this day, and for good reason as I reflected a bit today about where I am. I am in between death and life in a sense, a valley of the shadow of death of sorts, similar maybe to a hypothetical situation of being thrown off of a boat into the ocean, but those on the boat remain a safe distance away. They yell from the boat to you, "Don't worry we know how to get you out of this, but for this to work, you have to start drowning. After you begin to take on a couple breaths of water, we'll scoop you out and revive you." Right now, I'm effectively starting to drown, my chemo has done its job and my bone marrow should have stopped producing anything else for me. After what's in my system right now runs out, my normal blood levels should decline and bottom out at zero. At the same time, my stem cells, awoken from cryogenic sleep of five years, will have been making their way back into my marrow and begun rebuilding my blood systems. Then some time after I bottom out, the rebuilt system will begin producing necessary blood levels and get me back where I need to be, which will take a few months before I am fully back.
Contrary to our expectation, the chemo was administered at around 10pm last night rather than mid-afternoon. It was wonderful to have my mom and brother with me and Jas through most of our very long day. After a morning appointment with our Oncologist specialist, who just happens to be leaving this practice for something else in late October (it seems all of our Oncologists will have moved on), I went in to get my PICC placed. A PICC line is more convenient and comfortable than going through multiple IV placements; it's two ports hanging off of my bicep. We started settling into my room, cleaning, organizing, meeting the staff and waiting... waiting for them to mix my chemo and send it up... and waiting... and waiting... After going to grab some dinner, staff shift-change, and running out of time for my mom and brother to stay any longer, we prayed together and they headed home. Jas and I spend some much-needed time alone to digest the last minute reality of what was coming; these are the times that it is so evident how we were made for each other at the deepest level... we fight about dirty dishes and car keys, but we act as one flesh, totally unified, when it comes to difficult times like this. And then it came, a small bag of melphalan, 382 mg based on my body stats (which happen to be 1.91 meters cubed, for those geeks out there like me that find that interesting). 30 minutes of drip, drip, drip into my system and I didn't really feel anything... just the weight of what's happening behind the curtain, as Jas sat next to me, and I chomped on ice for three hours as a way to reduce the side effects associated with mouth sores that could occur later. It's still a little weird to know crazy stuff is happening inside me, and I wouldn't even know the difference if they hadn't told me, and that tomorrow even more crazy stuff is going to be happening... Thank God that this frail body of mine is resting in His capable, loving, sustaining hands. More to come, but time for me to rest up! The re-introduction of my stem cells is scheduled for 9:30am tomorrow, October 5th. Thank you for continuing to lift us up with prayers and encouragement! The Sullivan’s send our sincere gratefulness and love to you all!
So, that leads us into yesterday, October 3rd, the preparation for transplant. It's the beginning of the process of the Bone Marrow Transplant, but the actual "transplant" day is considered the Stem Cell infusion day, which is tomorrow. As Jas describes it, there has been a huge amount of build up to this day, and for good reason as I reflected a bit today about where I am. I am in between death and life in a sense, a valley of the shadow of death of sorts, similar maybe to a hypothetical situation of being thrown off of a boat into the ocean, but those on the boat remain a safe distance away. They yell from the boat to you, "Don't worry we know how to get you out of this, but for this to work, you have to start drowning. After you begin to take on a couple breaths of water, we'll scoop you out and revive you." Right now, I'm effectively starting to drown, my chemo has done its job and my bone marrow should have stopped producing anything else for me. After what's in my system right now runs out, my normal blood levels should decline and bottom out at zero. At the same time, my stem cells, awoken from cryogenic sleep of five years, will have been making their way back into my marrow and begun rebuilding my blood systems. Then some time after I bottom out, the rebuilt system will begin producing necessary blood levels and get me back where I need to be, which will take a few months before I am fully back.
Contrary to our expectation, the chemo was administered at around 10pm last night rather than mid-afternoon. It was wonderful to have my mom and brother with me and Jas through most of our very long day. After a morning appointment with our Oncologist specialist, who just happens to be leaving this practice for something else in late October (it seems all of our Oncologists will have moved on), I went in to get my PICC placed. A PICC line is more convenient and comfortable than going through multiple IV placements; it's two ports hanging off of my bicep. We started settling into my room, cleaning, organizing, meeting the staff and waiting... waiting for them to mix my chemo and send it up... and waiting... and waiting... After going to grab some dinner, staff shift-change, and running out of time for my mom and brother to stay any longer, we prayed together and they headed home. Jas and I spend some much-needed time alone to digest the last minute reality of what was coming; these are the times that it is so evident how we were made for each other at the deepest level... we fight about dirty dishes and car keys, but we act as one flesh, totally unified, when it comes to difficult times like this. And then it came, a small bag of melphalan, 382 mg based on my body stats (which happen to be 1.91 meters cubed, for those geeks out there like me that find that interesting). 30 minutes of drip, drip, drip into my system and I didn't really feel anything... just the weight of what's happening behind the curtain, as Jas sat next to me, and I chomped on ice for three hours as a way to reduce the side effects associated with mouth sores that could occur later. It's still a little weird to know crazy stuff is happening inside me, and I wouldn't even know the difference if they hadn't told me, and that tomorrow even more crazy stuff is going to be happening... Thank God that this frail body of mine is resting in His capable, loving, sustaining hands. More to come, but time for me to rest up! The re-introduction of my stem cells is scheduled for 9:30am tomorrow, October 5th. Thank you for continuing to lift us up with prayers and encouragement! The Sullivan’s send our sincere gratefulness and love to you all!
9/13/2017 - A new season…
I like how times of our lives are sometimes described as seasons. There are things to enjoy in each one, things to learn... and when one comes to an end, another one begins. It seems that the season is changing for us again. We've been in an almost 5 year season of blissfully "normal" cancer-free life. After radiation and a "sprinkle" of chemo treatment (as described by my oncologist) 5 years ago, we've enjoyed what we believe is God's miraculous healing, pushing my cancer into remission and making the slow re-emergence of it easily detectible, and without any damaging effects... but alas, it has returned. A slow and steady increase in my detectable kappa light chain proteins over the past two years was the indicator that something was going on, but the low levels and slow climb allowed for us to be ready, and take our time making decisions about what to do. I've had many interesting thoughts over the past two years, yet looking back (hindsight being 20/20) it's pretty obvious that it was slowly growing in my bones again. Every month or two, when I got my bloodwork done and we would be waiting for the results, I would look ahead with hope at all the possibilities. Would the numbers level off and remain low and steady forever? Would they turn and decline to zero? Would they miraculously disappear again, going back to normal unexpectedly? Given my history and our belief in healing miracles, any of these outcomes would not have surprised us. We were also faced with another question... What's a bad number or a dangerous number? Compared to the levels detected when I had my bone lesion/tumor 5 years ago, they are pretty low at the moment (with a normal range of 2-20, I have crept up to about 300, compared to between 7,000 and 14,000 long ago), though nobody can really say when the damage or dangerous turn is going to happen. After a bone marrow biopsy that showed absolutely nothing two years ago when my numbers has started climbing outside of the normal range, we've done another recently that showed the cancer had in fact returned... and now, we are ready for the fight. Our decision to stop treatment and see what God's mighty hand had done 5 years ago was a step out... in faith maybe you would say, but that doesn't quite capture it. It was really an offering to God, trying to be a living sacrifice (as the Bible describes in Romans 12) and to live my life in a way that doesn't make sense unless I be completely 100% absolutely confident that the God I belong to is as real as the nose on my face. I must admit, I don't live like that every day, but we were faced with a time when we had an opportunity to let the world know that no matter how ridiculous or absurd it may have seemed, if God healed... if He did something, I wanted Him to get the credit... the glory for it. For the small spattering of chemo I was treated with, I far exceeded what remission any doctor expected for me... and that's just one of the many miraculous ways He has intervened in my life. Add up all those times, and look back over how He's taken care of me and my family, and you'd understand why we can walk into this next season without fear. So what's this next season look like? Well, we have a general idea, but I don't think anyone can ever understand until you walk through it... Here's what we know...
Talking with our oncologist specialist, the options were much better than we expected. Our best option, given that our feeling now is that we're ready hit this cancer with all we've got, is to do the Bone Marrow Transplant (side note: it involves no surgery; it is a high dose chemo shock, with a re-introduction of your own blood stem cells to essentially restart your bone marrow blood and immune system from scratch). To our surprise, given my previous response to treatment, the early detection, the slow growth, and a bit of expert experience, our oncologist specialist suggested no chemo prep for the transplant, and no maintenance regiment afterwards. Our hope would be another long (long, long, long) stint of symptom-free cancer-free "normal" life. The transplant is a pretty harsh treatment, and it is going to suck for a few weeks, and I'll be pretty isolated from the world for a few months, but after recovery, I should be right back at it.
I know many of you have faithfully prayed for me over the last 5 years, and I am eternally grateful for you. The prayers of friends, family, and those around the world that I have never met, have lifted me up, upheld the strength of my family, encouraged us, and prepared us with the faith to be ready for the recent news. We appreciate your continued prayers through this time, and I especially covet your prayers for my wife and kids as they will need support as I go through this. So many of you have already offered to help with anything we may need, and I can't express my gratitude enough.
October 3rd is the big day, the day I check in to the hospital and get my mega-dose of chemo. After that will be my stem cell re-introduction on the 5th, and then my immune system will bottom out and begin to recover. I'll be in the hospital for a few weeks, and then confined to a minimum security isolation room at home for another few weeks until my immune system has recovered enough for me to fight off the typical onslaught of germs. I hope to keep up with my blog throughout the process.
12/22/2013 - What?!? Wait… Oh, ok…
This week was my last
test and results for this year. It was a
big one, since both my oncologist here in Allentown, and my myeloma specialist
in Philly both believed that given my circumstances, and our decision to stop
treatment when we did, the myeloma would return to its aggressive, destructive
state by now. I would like to take you
on the rollercoaster of emotions we went on over the last few days…
Thursday I met with my oncologist to discuss the results of my bloodwork, which I hadn’t seen yet. We meet every three months now to review my status, instead of every month like it used to be. But this time, when she walked in, she told me that my numbers had gone up and there’s a good chance that the myeloma has come out of remission. There was a slight chance that the numbers blipped because I was fighting a stomach bug a few days before my bloodwork was done, but it was in my best interest to get some more testing done to see where things are at. My numbers were 9.23, versus 0.92 the previous month (normal range 0.3 to 2.0). This was unexpected, but didn’t shake me too much. God’s done so much for me already, and after miracle upon miracle have been poured into our lives, I had a feeling that this was just a blip… not the real thing. So the plan was to get another set of bloodwork taken, get a bone marrow biopsy done to check out my plasma cells, and contact my specialist in Philly to get his recommendations on further treatment and re-entering the path toward a bone marrow transplant. We finished up the consult and I headed out to the scheduler to set up all my appointments…
So, the scheduler is working with me, and hands me a copy of my results while we are setting up appointments. I look them over, very familiar with the numbers I am used to looking for… obviously… and when I see my Kappa Light Chain results, I think to myself, “Hmm, these look suspiciously similar to the units they use in Philly (mg/L) rather than the units they use here (mg/dL).” I ask the scheduler if I could talk to the doctor again because it looks like we may have read the results wrong. Sure, no problem, she comes right out after she frees up and we look at the numbers again. No joke, the lab has changed the units they report the results in 2 or 3 weeks ago. She is a combination of extremely frustrated with the lab, and devastated because of everything we just went through, because that means my numbers are identical to last month, 0.92 mg/dL.. perfectly, extraordinarily, absolutely normal. Through some apologies, laughter, sighs of relief and shouts of joy, I had all my newly scheduled appointments canceled and set up another to see her in three months.
Jas would have fared much better through this if I wasn’t such a knucklehead. My poor timing and texts really rocked her boat quite a bit, and we made sure to tell the doctor that “you can’t do this to a pregnant woman!” but all was well when it was all said and done. And for me, it was actually better than well, it was amazing. Even though nothing had changed, this was a milestone result for me, and working through 20 minutes of the possibility of having to treat myeloma again, followed by the realization that there is no sign of cancer… again… still… gave me the feeling of a brand new miracle all over again. I drove back to work high on life, blasting “Overcomer” and singing with tears of joy and gratitude for each day the Lord is blessing me with. It felt like a Christmas miracle.
Merry Christmas. I hope you enjoy the holidays with family and friends, and you experience the Love of God this season as we celebrate the birth of Jesus… Emmanuel, God with us…
Bloodwork taken
Monday. Typical monthly ritual for me,
nothing out of the ordinary.
Thursday I met with my oncologist to discuss the results of my bloodwork, which I hadn’t seen yet. We meet every three months now to review my status, instead of every month like it used to be. But this time, when she walked in, she told me that my numbers had gone up and there’s a good chance that the myeloma has come out of remission. There was a slight chance that the numbers blipped because I was fighting a stomach bug a few days before my bloodwork was done, but it was in my best interest to get some more testing done to see where things are at. My numbers were 9.23, versus 0.92 the previous month (normal range 0.3 to 2.0). This was unexpected, but didn’t shake me too much. God’s done so much for me already, and after miracle upon miracle have been poured into our lives, I had a feeling that this was just a blip… not the real thing. So the plan was to get another set of bloodwork taken, get a bone marrow biopsy done to check out my plasma cells, and contact my specialist in Philly to get his recommendations on further treatment and re-entering the path toward a bone marrow transplant. We finished up the consult and I headed out to the scheduler to set up all my appointments…
So, the scheduler is working with me, and hands me a copy of my results while we are setting up appointments. I look them over, very familiar with the numbers I am used to looking for… obviously… and when I see my Kappa Light Chain results, I think to myself, “Hmm, these look suspiciously similar to the units they use in Philly (mg/L) rather than the units they use here (mg/dL).” I ask the scheduler if I could talk to the doctor again because it looks like we may have read the results wrong. Sure, no problem, she comes right out after she frees up and we look at the numbers again. No joke, the lab has changed the units they report the results in 2 or 3 weeks ago. She is a combination of extremely frustrated with the lab, and devastated because of everything we just went through, because that means my numbers are identical to last month, 0.92 mg/dL.. perfectly, extraordinarily, absolutely normal. Through some apologies, laughter, sighs of relief and shouts of joy, I had all my newly scheduled appointments canceled and set up another to see her in three months.
Jas would have fared much better through this if I wasn’t such a knucklehead. My poor timing and texts really rocked her boat quite a bit, and we made sure to tell the doctor that “you can’t do this to a pregnant woman!” but all was well when it was all said and done. And for me, it was actually better than well, it was amazing. Even though nothing had changed, this was a milestone result for me, and working through 20 minutes of the possibility of having to treat myeloma again, followed by the realization that there is no sign of cancer… again… still… gave me the feeling of a brand new miracle all over again. I drove back to work high on life, blasting “Overcomer” and singing with tears of joy and gratitude for each day the Lord is blessing me with. It felt like a Christmas miracle.
Merry Christmas. I hope you enjoy the holidays with family and friends, and you experience the Love of God this season as we celebrate the birth of Jesus… Emmanuel, God with us…
11/28/2013 - Giving Thanks...
Today I give many thanks... To God for a year of abundant life and miracles beyond my imagination... and to all of you for countless prayers and encouragement! I hope you are enjoying abundant life with your families this holiday season. It's a great reminder for me every year, that no matter what we may be facing in life, we have much to be thankful for. May the Love of God be a blessing to you all!
And for those who are following my numbers, I got a good report for November (0.93 mg/dL). Amazing grace, how sweet the sound...
Happy Thanksgiving Everyone!
And for those who are following my numbers, I got a good report for November (0.93 mg/dL). Amazing grace, how sweet the sound...
Happy Thanksgiving Everyone!
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