New Treatment

As of Thursday,  we added an IV treatment to help begin strengthening the weaknesses in my bones. I’ll get it about once a month, in addition to the chemo shots/pills until we finish the induction phase of treatment now. 

Currently,  just awaiting getting this phase finished and aiming toward the stem cell transplant at Emory. I wish we had firm or even tentative dates, but all we can guess is around May. 

I was reflecting during the IV dose, that I’ll be through with the hospital stay around June and then “ready to hunt” (Dr’s words) by October. From June – October will seem like a long 4 months. I’m not sure if it’ll be steady feeling better throughout that time or “small increases” of it. Either way,  it’s a path I’ll walk. 

I guess the unknown can hold some mystery,  some unseen things I’ll experience and go through. Of course,  I just realized, I was diagnosed in January and the stem cell is now about 4 months out,  so I guess it might go at about the same pace as now- 4 months on each side of the stem cell transplant. 

I’ll sum it up with, I’m in God’s time and arms. He has this, I don’t. I’m content with that too, because He’s far more qualified for leading. Being along for the ride takes the pressure off of me. 

So… 8 months total given over to God. Not so bad of a trade off I guess.

“Miracle Week”

This week has seemed like a miracle week as I’ve gotten better it seems every day. I truly give God thanks for what I call these “many blessings.” It’s as if He’s chosen to give me an easier path for now, while awaiting a more difficult one when at Emory.

On Feb. 2nd, I was using a walker, then a cane until last week and now my legs. That’s a “thank you” to God, for a small thing compared to what things could be, considering I saw a younger man in worse shape in the waiting room Monday. Neither of those modes of assistance with walking are particularly appealing to a 48 year old man, so not having to rely on them is something I appreciate. 

I also learned that I am not a doctor. Sunday night was the night to switch out pain patches. I pulled the old one off, took a shower and decided to see if the patches were still masking the pain or if the pain had gone, because I’d been feeling so much better and left the new one off. Well… at about 2 AM, I began to toss and turn, hurting all over. I then spent most of Monday chasing the pain away, but lesson learned!

So, I still haven’t really wrestled with “why me” yet. It’s hard to explain the peace I feel, even though I’m not in control. I guess it helps that I’m not a control freak… My job isn’t to worry, to wonder or question- although that doesn’t make those things sin. I decided early on, that I would wander (not wonder) along with God on this journey and learn what I could learn. I’m not saying He caused it either, He’s just using it to allow me to learn and grow in ways I never saw coming. “He has this” is something I’ve realized from the start. 

“By faith we understand that the entire universe was formed at God’s command, that what we now see did not come from anything that can be seen.” Hebrews 11:3 NLT http://bible.com/116/heb.11.3.NLT

All we experience, all we are and all we see comes from something we cant see. If I can understand creation being created by God’s voice, everything else is easy. 

“Cane less”

I want to continue my thanks to all who are praying and wanting to help. I’m still blown away with people’s generosity, both financially and with wanting to help with rides, prayers, etc. I believe you have elevated me to throne room of Heaven (think squeaky wheel) and kept me in God’s attention. His healing has been poured out on me and I know it is from Him. The rides to Emory were big helps and came up rather quickly. Most likely, Emory trips are probably done until April. I’ll share a link you can sign up through when we have some days start popping up closer to then. Even though my current physical needs are not a big issue right now, I truly have been shown concern and love by the offers you make.

No major news, but I’m on my own two feet. The walker and cane were a necessary “evolution” in my progress, but so glad they’re gone and hopefully for good. They were a crutch of sorts, a help to get around without pulling the other muscles in my body out of whack.

I’ll take a momentary limp in life rather than death, which is why I came out swinging and wanting cancer dead (the “10109d” part of my blog title). This got me to thinking about quotes I had heard about faith being a crutch…. I found this one online.

We all occasionally need help. Sometimes we need a resurrection as well. Only the dead in faith need a resurrection though. There’s no shame in realizing you’re spirituality dead, just an eternal danger of ignoring that realization. Some people know it and struggle with pride in admitting it. I think some folks get stuck in the way they’ve lived and simply have a hard time changing, maybe think they have to stay living right a certain amount of time before God can accept them. Guess what, God doesn’t accept us, we accept Him. He paid the price for our sin (redemption) on the cross. That changes things. I don’t have to be perfect, right or good enough. I just have to admit that I want to surrender to Him and then start living, trying to “do right.” You’ll slip. You’ll mess up. You’ll fall. We all do.

If you’re struggling with stuff, have questions about your faith or want to know more, then be sure to act. Talk to a Christ follower you know or start reading the Bible (John is a good book to start with). Not a one of us are perfect so we won’t judge where you are- besides, we’ve been there before ourselves. Just don’t stay dead!  “… I have come that they may have life, and have it to the full.” ‭‭John‬ ‭10:10‬ ‭NIV‬‬  http://bible.com/111/jhn.10.10.niv

3rd Biopsy 

My 2nd biopsy, last Wednesday, was to measure the amount of myeloma in my marrow. In order to get into the clinical research study,  I had to have at least 20%. I received a call Monday that I had gotten into the study and they set the appointment for this morning.

I get there for the 7:15 labwork. The phlebotomist (most people refer to them as vampires, but I don’t-  I want to keep people who stick needles in me on good terms) drew about 7-8 vials of blood. Emory has this part figured out, I haven’t waited more than 10 minutes at the lab yet.

I then waited for the 8:30, biopsy appointment. They were just opening, so I had a wait here, but passed the time partly by watching people. I hope they get as amused watching me as I do watching them. I had just started pacing when they finally called me. I then found out, my Dr would do the procedure himself. He said he did it “old school”- no electric drill, but manually. He also said, with only one round of chemo, I’m down to 28%! I was blown away to say the least.

This 3rd biopsy hurt like hades. I found out that about half opt for the sedation,  but so far, I have passed on it- but may rethink that the next time. They needed about a tablespoon of marrow this time. They’ve been getting a chunk about the size of 2 bbs. This will be used to create the vaccine, if in that part of the study or just general research if not.

With all of that going on, to get to the procedure rooms, I had to walk by a very large infusion area. This is an area where cancer patients getting treatments via IV get seen. There are beds where they can rest, while tethered to their IVs. Many of them are wrapped in blankets, their bodies now many pounds less than usual, trying to stay warm. Some sleep, their exhaustion from fighting week after week too much. Others read just to pass the time.

I have had a fairly easy fight compared to a lot so far. My chemo not causing nausea or sickness. My hair (what remains) hasn’t fallen out. I’ve been aggravated by the hiccups, walked with a weird limp at times , was tired for awhile and have had dry mouth. I know it will get worse when they get closer to the stem cell transplant time, but for now, I am thankful for it all.

For now, 28% is great news. A few hiccups are nothing. People ask me about how I keep a positive attitude about all this.

First, I just don’t worry. For many of you, you can’t even fathom that. Worry is useless. I don’t know why it was me that got it. I don’t how long I’ve had it. You know what? I don’t care either. It wouldn’t change anything either way. I’m different like that, so it’s helped me through life.

Second, I rely on God’s time frame, His plan and His promises. I didn’t set out to approach this from a positive way of thinking, I just kind of accepted it and moved forward. I treated it like waking up late or forgetting something- you just move on or give up. Giving up was never an option. Again, one of my quirks that work in my favor.

What can you take away? It’s easy for me to tell you “don’t worry.” It’s another for you to do so. Try it though! Don’t beat yourself up if you can’t, take it one small step at a time. Rely on God. This means you can’t do it on your own, so accept that you can’t. Allow it to be “we” or “us” (you and God) when overcoming something or going through it.

Laughter Is the Best Medicine 

Last night, we were invited into a fellow SHCC church family’s home. They simply wanted to show love to our family. It was one of our SHCC small groups, which already knew each other and regularly meet together, studying and doing life together. Going in, we were the “outsiders” as we didn’t really know some of the group very well. I actually knew probably more, as I have served in All Stars or 456 with some of them, but “outsiders” is not how we left.

We sat around the table or stood in the kitchen getting to know some very dear and new souls who are now a part of our lives. We were welcomed and went home with the feeling that we’d known them for years. We laughed together, compared our children’s antics and learned that their small group loves to spend time together.

We thoroughly enjoyed the night. If you know us, we’re introverts except for Alana, we don’t know where she gets her personality from. We are more than content to sit in the back and stay in our small circle. We always seem to have a good experience if we are forced to stretch outside our comfort zone, we just will never openly run towards it. With that said, we also know it’s good to do so occasionally too- we’ll just avoid it as long as possible.

Last night confirmed again what we know. God’s will is worked out so often through His people. He used several families to create a night in which we felt loved on. I think the laughter expressed and experienced by all was much needed and enjoyed by all.

I continue to feel better, overall, every day. The pain from the biopsy continues, but I know it will also be fading soon. I hope to soon be walking soon with just my legs and without any help. God has been gracious through this and it is clear He is right beside me every step. I have experienced no nausea or sickness from the chemo. The ribs were “fused” quickly, allowing me to use the walker/cane and stopping the pain from them. The fact that the myeloma was discovered as early as it was and the way it was, points to God. I’m able to walk, when they looked at my level of myeloma thinking I would be in a wheelchair-& that’s God at work!

So, to the families from last night,  thank you for the fun and laughter. It truly is good for the soul and most definitely was so last night. They say the way to a man’s heart is through his stomach. For me, I think it’s through laughter- but food doesn’t hurt either. When they say that laughter is the best medicine, they’re right.

Biopsy #2

Went back to Emory for a biopsy to make sure I still have at least 20% of myeloma in my marrow. If not, it’s great for me health wise,  it just would bar me from the clinical research study.

I should have an answer within 2 weeks. My Dr expects, based on my bloodwork results, I’ll be down from 90% of myeloma to around 40%. I’m looking forward to seeing how close his estimate is. I’m guessing he’s seen enough to be really close. The biopsy will tell us the numbers.

Squeamish warning:  They used an electric drill for this one. I think it was less painful, which was opposite of what I thought when I heard it fire up. I think overall, it was better, just the discomfort once home a little worse than the first one. No pain though. Squeamish warning cancelled

We’re testing a sign up app for those wanting to help us out. So far, we haven’t needed a lot, but with more trips expected to Emory…. If it works out, we’ll post it on the blog as well as sharing it digitally. 

Clinical Study Consult

First off, I graduated from the walker to a cane. Today, I walked some without the cane, so I may get rid of it soon. So happy about that!

I went to Emory today for a consult with the Dr about the clinical research study as well the stem cell transplant later on. We got a lot of information thrown at us, so I’ll give you what we know now. Also, multiple myeloma has been described as both a bone and blood cancer. This Dr called it a blood cancer. This part still has me a little confused- I guess it’s a blood cancer which affects the bones. Maybe, it’s not so confusing….

If you want to read up on the study, click the link,  Emory Research Study

They really need to ( and I want to!!!) to get this started this week or next week. This means a trip every day, for 2-3 days to Emory, for this study. This will also require another bone marrow biopsy, so I have that to look forward to. I’ll be monitored for 3 years to track progress and things like that. There are 3 groups to it- with each group getting certain treatments, which I might or might not get a “vaccine” (the point of this study) or not, but long term would benefit the entire study and patients down the road.

The stem cell transplant will be most likely late April or May. This will involve the removal of my stem cells (after they been stripped clean of myeloma) and then putting them back with only what they want to go back in. He explained it as a garden (me)  with both weeds and flowers growing in it. You go in a get the flower seeds you want saved over the first day or so and store them safely somewhere else (stem cells). Then, you roundup (stronger chemo than what I’m presently taking) the entire garden over a day. Then, the good seeds get put back in to do their things. The remainder of the 2 weeks in the hospital at Emory for care of infection, etc. and then 2 more weeks staying close to Emory after the transplant.

He thinks by October, I’ll be deer hunting (I was wearing a T-shirt with a hunting logo on it). I’m excited to keep at fighting it. He mentioned there is still no cure, but I’ll be the one he’ll scratch his head wondering how I keep living. The long term treatments for longer lifespans are really common these days. I’ll take those odds any day and amaze him on the other side. Death ain’t even noticed me slowing any, but keep praying, I want God keenly aware of how many want me getting better.

“The Lord will fight for you; you need only to be still.” Exodus 14:14 NIV

I thought about the last part of that verse, “you need only to be still”. Why should I stand still? Shouldn’t I pick up a weapon and fight too? Or, shouldn’t I run for cover, away from the battle, till He can come get me? Why stand still, shouldn’t I….? Notice anything about that way of thinking? I did.

First, it involves a lot of “I” and leaves God out. Second, if God needs my help, then it seems to limit God or seems that I don’t have total faith that God does indeed “have my back”. Third, if I run for cover, am I fully relying on God to fully handle it after all.

God says to stand still. It’s in the form of a command,  with no exceptions. It is because of the first part of the verse- “The Lord will fight for you”. He’s in charge. He’s got this. He knows the outcome,  where the next attack is coming from and where the blow is aimed. If we’re running around, we’re apt to get in the way, so he wants us still (now…I know He can know where we are too, just go with my way of thinking please).

He may get others to help, but our job is to be still, to rest, to stay safe or heal up. His job is to fight. Ours is to accept help. His, to dish it out. Ours, to listen, learn and have time to grow stronger. His is to take care of the enemy and us at the same time.

Don’t get those reversed and stand in the way of God’s will, plan and best practices. 

The Lord will fight for you; you need only to be still.” Exodus 14:14 NIV