Vaccine 3… of 3

Tuesday, I had a follow up heart consult. The plan is to measure the aorta again and see if it has grown any. If it stays the same, we’ll just keep monitoring it for change. Another part of the news is the bigger section of my aorta is the bottom. The way I understood him was the top part can fail easier. A lot better outlook than initially given in April.

I received my final vaccine and accompanying shots this morning. Someone asked if I could tell any difference. I can’t, but that doesn’t mean it is or is not working, as since there isn’t any active disease for it to affect. It’s a plan and action now in case the disease returns. The research into how it works and what they learn from it is beyond me. The hope is that it will help others in the future. My last biopsy results are back, just haven’t been reviewed yet- maybe by next week.

Our bodies are tough and yet fragile at the same time. They can rebound from really bad injuries or health complications. Yet, a small thorn into a finger can bring blood flow. Both a broken bone and a paper cut can bring you to your knees. We are designed to rebound, to bounce back and keep going. 

God designed the body to fight back. It actually begins fighting back before we know anything about it. Think about that, we don’t have to tell it to fight or try and decide whether we should or not. Keeping it fit so it can fight well is a good idea. Keeping ourselves spirituality fit and prepared to fight is also a great idea.

Just as we don’t intentionally create cuts in our skin to allow germs into our bodies, don’t intentionally open yourself to sin. Eat healthy to keep your body healthy, feed yourself a good spiritual diet also, to stay spirituality healthy. It takes time to heal physically and sometimes it takes time to work through forgiveness and allow grace to let you live again.

Advertisements

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.

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!