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.

Day 4

Here I am, 4 days after receiving my stem cells. Someone asked me what my day is like… so here goes.

I’ll start with a 24 hour timespan. Around midnight,  I get woke up for bloodwork.  At least it’s taken though the central line, it’s easier.

Around 6-7, I wake up. This means blood pressure and temp checks aren’t far away. Then breakfast. I’ve about settled for cereal until I’m sure the nasueau will not visit, just to be safe. The last few morning have had me tied to IV bags, replacing what levels are falling. Then meds, mostly pills, but one injection. 

I spend some time walking each day, as they want me to stay as active as possible.  The goal is a mile a day. Broken over several times, it isn’t too bad. By mid afternoon,  I usually pile up in bed or on the couch and rest, unless I have visitors. 
Over the day, nurses come and go. Questions are asked of me about walking, eating,  pain levels, etc. The room is cleaned and bed made up.

A doctor comes by- still telling me the same stuff the nurses tell me I should be doing. He also tells me I’ll get through the basement period and be feeling better soon. 

Dinnertime comes and goes. More TV, watching my family hang out with me and realizing that I’m blessed they’re here. I also know they’re bored too! Jo and Kelly read, Alana sleeps. In an instant, any of them will go walk with me to help me pass my time. So blessed to have them here!

At some point, I have these antiseptic wipes to wipe down with before bedtime. More blood pressure and o2 checks. Before I know it, they’ll wake me up around midnight for more bloodwork. 

That’s my day! It isn’t too bad and could be a lot worse. I’ve been able to leave the floor, leave the hospital, eat what I want…. The mask stinks because it’s required,  but it protects.

Many times, what protects is what we hate. We get as close to sin as possible. We hate the commands, the Bible or laws while all the while, they’re what affords us safety. They’re this large bubble of safety and we stand at the edge poking it and then complaining when it pops.

Don’t forsake what keeps you safe!

A New Birthday 

I got my stem cells back and a lot of meds this morning to make the re-entry go smoothly. Everything went smooth and the 30 minute re-entry took all of 7 minutes. The meds had be a little loopy and I was tired afterwards for awhile. A brief nap cured that….
I walked outside for awhile and spent time with Alana while Jordan and Kelly went looking for a restaurant a little further than I dared to try walking. The mask gets claustrophobic and hard to breathe through in long walks.
The nurses came by and sang “Happy Birthday” to me and placed balloons on my door. The birthday is because my immune system being like a new born baby’s immune system. I’ve had some great nurses here! 
Over the next couple of days, I begin the decent into the “basement ” which is the low-point and the worst feeling part of chemo. It’ll last appx. 4-6 days and then the stem cells should be rebuilding things. Everything is one step closer to a healthier me, so it’s worth it. 
Btw, I didn’t smile…..

Day “-2”

They call the chemo day, day “-2” because day “0” is the day (2 days later) when you get your stem cells back. Around 9pm tonight, I’ll get a dose of chemo to reset and kill everything.

That dose kills without discretion, without purpose, the good and bad cells alike. It’s like sin. Within it is no life. No hope. No purpose. The sole purpose of sin is to kill the soul.

If I just got the chemo and left it at that, I’d most likely die. With no immunity, no white and red blood cells, I’d receive a death sentence by itself. Coupled with my frozen stem cells, I have a chance at life.

With sin, left alone is a death sentence of hell. No hope, no life and no purpose. With Jesus, we have life. We have purpose and we have hope.

So begins the next 2 – 2.5 weeks of recovery. Another step in being as healthy as possible. Thanks to everyone who has helped me in some way to get me here and see me through it.

Stem Cell Collection 

Day one of stem cell collection is going great. I just got the news that I’ll most likely collect the 12-15 million today. Someone will call me this afternoon with the numbers, but according to their calculations, it might be a one-day affair. Will keep collecting until 1 today. I will also have to be back tomorrow for labs, but this part could end quickly.

Emory has awesome nurses and doctors,  but their cooks leave a little to be desired. I may need food smuggled in when I get admitted in May. Otherwise,  I’ll lose weight dramatically. 

I’m very thankful if this can be completed today. Sometimes,  it’s the little things in life that make the most impact at just the right time.

Find something to be thankful for.  It shouldn’t take long or be that hard. First off, you woke up. You have a home, family and friends. There’s always something there, you just have to see it.