Fit For Duty

Being back to work with no restrictions has been great! What it really means is, obviously, I’m feeling much, much better. 

Friday, I was at Emory for my “every 28 days” visit, as my maintenance medicine gets replenished every 28 days. There is a Paraprotein Concentration marker, which is measured from lab work, which is my “marker” for the amount of Myleoma likely in my body. For me, this marker has very much mirrored the amounts detected by  each of the bone marrow biopsies I so much looked forward to each time.

Back in July 2017, around 2 months post stem cell transplant, my level was about 0.17. The end of October saw it around 0.1 and as of Frday it was 0.0. The PA said he’d expect my next biopsy to also be 0, but he wouldn’t put that in writing for me.

God has been good. This time last year, I was 2 months away from checking into Emory for almost a month. I’d never saw anyone close go through chemo, so I only had what I’d heard about it to base my assumptions of how bad it might be. There were a lot of unknowns. How bad would the chemo be? Would my hair fall out? Would it grow back? How long would I be out of work? 

God is good. I have my health. Even though each lab shows my white blood cell counts right at the low mark, I haven’t caught anything more annoying than a brief 24 hour stomach bug- even with a horrible flu season. God continues to be good.

Throughout my life, I’ve always been “in church.” I know the promises, the “right answers” and have heard thousands of times that God is good and faithful. It’s another thing to experience it, to live through it and see it firsthand. I’ve told people “God has this” but it’s another thing altogether to be in a situation where God did have it and “it” was yours. I’ve told others I’d pray for them. It’s another thing to know and appreciate firsthand that others were praying for me. My rubber had to meet the proverbial road.

God is good. He answers (not always the way we would expect it), He is faithful and He is present. Through every sickness, success, problem, solution, family squabble, desperate time or uneventful situation we encounter, He is constant. Do you see Him in the details? He’s there- with a doctor’s hand or a decision you make or in the gentle voice of a trusted friend. He’s there. He’s involved. He’s listening. He’s hoping. He’s there.

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The Difference In A Year

One year ago yesterday (a Friday), I received a call during lunch, telling me I needed to be at Tanner ER right now. I’d recently had an MRI in a new machine, in which the decision had been made that when using the dye/contrast, to test all patients, not just high risk ones. I wasn’t a high risk one. The results were that my kidneys were in bad shape. I wound up being admitted for 3 days, getting 3 bags of blood, getting introduced to a lot of nurses, technicians and doctors as they took X-rays, drew blood, ran all kinds of tests and I had the joy of getting my first colonoscopy. I wasn’t losing blood, my marrow was overrun with Myeloma and couldn’t produce it right, but I hadn’t realized any of this. My legs, hips and back hurt and my ribs were popping out of place.

Saturday morning, Kelly had gone home to get clothes and try and rest a little while Jordan entertained (waited on) me. I was wanting to go home, as this hospital stay was getting in the way of my plans. Finally, after what was not my first, “Can’t I go home?”, I was told I had some kind of cancer. That’s a life changing statement. Even through the haze of a sedation, I heard that distinctly. No “What was that?”, no “Excuse me, I don’t think I heard you right….”, it was crystal clear.

The hospital stay that was in the way of plans was suddenly where I needed to be. No longer an obstacle but now a chance at recovery or treatment or living. Cancer. It takes so many. Now I was in its sights. At least I was where I’d get help, where I’d get answers. 

Later, I would learn the name “Multiple Myeloma.” I would physically suffer and need a walker to get around for awhile, then a cane and finally my own legs again. The chemo from Jan- Apr wasn’t too bad, with really no side effects. Prayers were lifted and answered. The stem cell transplant took place. Prayers continued to be lifted and answered. Most of May, I was at Emory and a hotel nearby Emory. That chemo treatment felt like it knocked the life out of me. The roughest days, I really don’t remember much, was another blessing. 

Through it all, it could have been worse. I’m alive. I was younger than most fighting Multiple Myeloma. I never broke any major bones, didn’t have other health issues to complicate my treatments. I didn’t suffer a lot of nausea during chemo. It could have been a long year of recovery but it seems to have passed quickly. I can see God’s hand all along the way when looking for them.

My labs continue to be good. White cells are still right at the lower end of the range they should be at, but not a problem. The last bone biopsy shows no myeloma through conventional tests, but the DNA of myeloma is still present when a more specific test is ran. The measure they use, is .07gm/DL which continues to fall. For reference, if my math and Google is correct, 1 deciliter is just over 3 ounces. So, only 0.07 of a gram is found in 3 ounces and there are 85 grams in a ounce. 85 x 3= 255 & .07 of 255 is 17.8 ounces. I think… Math and good looks are not my strongest assets.

In seeing His hands at work, I wasn’t necessarily always looking for them, but they were there. At other times I begged to see them or feel them. His hands, like the hospital, was where I needed to be. I couldn’t self-help my way out of this or wait till it got better.

You may feel like God is in your way of living how you want to life. If He’s in your way, it’s you that’s headed in the wrong direction. He is where you need to be.

Vaccine #2

I received the 2nd of 3 vaccines last Friday. My blood work continues to be good. While there are not that many major improvements or changes to keep you posted, I do continue to improve overall. So, the short and sweet of it, I’m better, but still not 100% yet….

October of last year is when I began having a lot of symptoms. It’s sort of surreal that I’m a year from the “beginning.” In the middle of the back pain, when ribs were moving/cracking and my hips were so bad, that pain is what finally prompted me to seek treatment. Everyone told me to see a doctor, but until the pain was bad enough, I put it off.

A lot of times, one has to hit bottom in order to fix an addiction or face a problem. For me, it was discomfort and pain. Through that pain, I wanted a doctor to treat and fix it. Once diagnosed, though shocked, I was somewhat relieved in the fact that at least there would be a treatment. An “end in sight” was better than living with pain.

A lot of people question “why?” or  want to find a reason or lesson learned for things like adversity, cancer or other issues one is going through. I know I’ve learned some things. I learned that all the lessons or advice I’d given over the years, to “trust God”, is easier to say than always do. I also found that the trust I placed in God was well placed. Did God use that pain to push my faith, to grow and develop it?  Sounds like the a lesson which might have been in the Bible.

I’ll leave you with a few questions and a statement. What do you need to learn? Are you at rock bottom? Are you at the beginning of an issue you’re facing? Are you so angry at God, you can’t step back and see what He’s trying to teach you? Go see the Doctor (God).

Vaccine 1

I received the first of 3 vaccine injections yesterday, along with another shot (1 of 12, given the day of the vaccine and 3 days  after each vaccine). The additional shot is the granulocyte macrophage colony-stimulating factor (GM-CSF), which stimulates growth of (I think) white blood cells.

I’m now just over 4 months past my stem cell transplant and continuing to stay healthy. No head colds, flu or anything, thank goodness, other than dry skin. Revlimid is the culprit, I guess I’m more sensitive to it post transplant. I’m blessed by prayers and no other health issues to complicate my recovery. 

I was number 4 to sign up and be accepted into this research study, at Emory, which if you’re having trouble falling asleep, you can bookmark and read later. I am the first Emory patient to get this far. I guess that means the others already signed up haven’t progressed as well post transplant. The study will follow me for the next 2 years, so hopefully it will yield some good data for someone much smarter than I to process. 

Someone recently commented that I was a lot better than I was. How right they are. It seems forever ago that my back, ribs, hips and legs were hurting and that at times I could barely walk without pain. Ribs were “massaged” back into place in physical therapy and 4 ribs cracked (heard and felt) while hanging a few shirts in my closet. Then a walker and cane for awhile (so long dignity) to get around. Prayers all over the US, Indonesia and Nicaragua and probably others I didn’t know about were poured out and answered.

Looking back, I realized a peace, from the diagnosis and onward, that God was in control. I really never worried, was fearful or angry with God. I simply felt He was in control all along. I think He put the doctors in my treatment at the right times. His timing is amazing. Cancer is bad enough by itself, but at least I could somewhat “enjoy the ride” instead of having to drive too.

They say problems make you bitter or better. I’m not better (physically anyway) than I was before this jumped on me, but I’m not bitter either. I know I’ll be 100% sooner or later- I’m hoping sooner- so I’m good with that. I can’t control the disease, only my response to it. 

I almost forgot, the results of the PET scan shows no “metabolically active disease” and that’s what we want. I am thankful everyday for God’s healing, guidance and faithfulness.

For insomnia, the Research Study: https://apps.winshipcancer.emory.edu/clinicaltrials/Search/Details/BMT-CTN-1401

Maintenance Begins….

I’ve had several Emory visits lately, mostly related to the study, but today began the “maintenance phase.” 

This past Monday, I underwent a procedure, similar to the stem cell collection process, but to remove Dendritic cells this time. These dendritic cells will be used, along with marrow taken months ago, to create the vaccine. The biggest difference was 2 sharp needles in my arms and keeping my arms still for 4 hours. I keep telling myself it’s worth it…. I was very thankful Kelly was there to scratch all the itches. It’s amazing how you just take care of them without thinking until you can’t.

While there, we found out we had to return Tuesday for labs to make sure I was ok after Monday’s procedure and Wednesday for research tubes. We’d not been told about either but luckily were able to combine them both on Tuesday. Tuesday then turned into a longer than expected wait on lab results, but eventually got out of Emory. I will say things usually run smoothly there. Oh, labs were great!

Today, I thought was my 100 day check, but turns out it was scheduled for next week and today was just a research check. Next week was put off till the next research check, in September, so no long trips to Emory for awhile. The good news today is they now think I’ve got only appx. 2-3% of myeloma left. It might not even be that much…. If I can just get my bones repaired, I’ll be even better. My back really aches, but I know it’ll get 100% someday. If not for the over 2 hour wait for meds, today would have been even better, but at least I started my maintenance meds. 

The medicine prescribed today is what I took during the induction phase (Jan – Apr). I handled it well then and this dose is about 1/2 of that one, so I expect it to go well as well. My hair is coming back in (still grey and in the same places), I’m working, began teaching 5th grade boys at church and gained all my weight back (not as happy with this one). I’m blessed though and a lot better than the end of 2016, so I’m good!

60 Day Check

On July 10th, I had my 60 day check, which consisted of lab work and a biopsy too. My labs were good and I still haven’t gotten results from the biopsy, which will most likely be at the 100 day check. The best news was getting cleared to return to work. A skeletal survey was completed later that week.

This Monday, I learned that I’d been randomized within the study and placed within the “vaccine arm”. I’ll receive a vaccine created from marrow taken in an earlier biopsy, injections of a drug (which I can’t remember and if I could, I probably would misspell) and maintenance drugs. Over the next few weeks, I’ll know more and experience more, most beginning around the 100 day check.

I’m feeling better and a little stronger each day. I still need to write a post on all the funny things that have happened during this journey, so stay tuned, you’ll enjoy or your money back….

Yet Another Update 

I’m really behind in updates. In case you’re further behind than I am, I was released from the hospital May 25th. I spent about a week in a hotel close by Emory and then came home.

During the hospital stay, the stem cells were replaced and seem to be doing their job. I did manage to get some kind of infection in my blood. This required an antibiotic through a central line in my arm (the one in my chest was swapped out for the arm) every 8 hours until June 4. On June 5th, the line was removed and during a stop at the clinic, I was sent to the ER and spent from about 10:30 – 9:30 there.

During the ER stay, my heart rate was around 130 when sitting and 145 when standing. They are still not sure why, but my heart rate was elevated (not that high) during the hospital stay. It continues to stay over 100 just sitting. Needless to say, that was a long and tiring day. Most of that week, I felt really bad, but around Thursday, I turned the corner. By Sunday (11th), I went to church, which was my first trip anywhere in awhile.

Some other news:

During the hospital stay, Kelly’s car became possessed. It wouldn’t start, then the wheels locked up. It had to be towed…..  Things that were sweet, they became something I couldn’t stand for a week or so after getting home. Juices, coke, etc were all something I couldn’t stand. Even flavored water was terrible, but that’s all back to normal now….  There’s all kinds of things I have to avoid- certain foods, fresh water lakes, dirt, etc. I’ll have to be immunized again in a few months. 

So there it is, in a nutshell, my life the last month. I thought I’d be back after a week or two, but my strength is just going to return more slowly than expected.

Thank you to those who prayed, called, texted and/or visited.