100-DAY CHECK UP!!

Welcome back to the grand adventure! Here, have a picture of Hanna about to give up half the blood in her body to the blood test people at Mayo Clinic/Med City. Eleven vials this time!

We made a quick trip to Mayo for Hanna's 100-day post Stem Cell Transplant checkup (and celebration). We flew over on Monday. Attended a full day's worth of tests and appointments. And then flew home on Wednesday. We stayed at the same home we stayed in for two months last Fall. We are starting to call it our "second home". Rochester is a fine city and it feels like home too.

First up was the very extremely early 7:30am (5:30 in our time zone) Blood Draw. (See above).

8:00 was the Bone Marrow Biopsy. This was Hanna's third time to have a drill or needle plunged through her hip into the bone marrow to take a sample and see how much of it is cancer. Good news and Bad news on this one. Bad news first. This time, for the first time ever, it hurt. Not unbearable, but about 30 seconds of pain shot through her bones clear to her toes. Good news: She could feel the pain. The Neuropathy is being cured, slowly but surely. She has prided herself in doing the Biopsies without sedation. Up until now. That may change going forward.

Next up was the Immunization Review. A couple of nurses spent a lot of time with us going over what Immunizations Hanna will need and when, in great detail. Typical for Mayo, which is good. She will need all of her child immunizations over again. Those will start at the six-month mark and will continue, some at a time, until the one-year mark. Live-culture shots will be delayed for at least a year, possibly two. She received her first COVID shot before leaving the room. At this time, COVID is one of her highest risk factors. She is still somewhat immunocompromised (although not as bad as 100 days ago when she had no immune whatsoever) and her lungs would have a difficult time fighting off the Rona if she got it.

After a quick lunch, we met with Dr. Buadi. He was filling in for our Dr. Gertz who is on a one-month leave of absence. (Doctors are human too.) Dr. Buadi is awesome and is an Amyloidosis Specialist. He has been at Mayo pretty much his entire career and has specialized in nothing other than Amyloidosis. He took a long time with us, answered a barrage of questions we had for him, went over the blood tests that were available so far, and gave us guidance going forward.

So, where are we?

All blood tests that we went over were in the NORMAL RANGE. 

Earlier today, the biopsy tests came in on the Mayo Portal. We meet with our oncologist in Post Falls in a few weeks and he will no doubt go into more detail as to what the results mean. But it does say Multiple Myeloma Cancer Cells are at "Minimal Involvement" at .0011%.  (Yes, there is a decimal point in there. Eleven Ten-Thousandths of a percent).  (As retired CPAs, we conferred on the pronunciation of this number extensively and we think we have it right. But.....we are retired and may be off. Use it at your own risk.) When first diagnosed, they were at 80%. They were at "under 5%" after four rounds of Chemotherapy and before the Stem Cell Transplant. 

And it says "Amyloidosis Negative." Certainly good results.

They don't use the terms "cured" (this is an incurable disease) or "remission" (the little bugger cancer cells are always going to be there). The goal is to eradicate as many cancer cells as possible and keep them to a minimum for the duration. They do use the terms for how your body is responding to treatment. After the Stem Cell Transplant, they deemed Hanna at "Very Good Partial Response". We're hoping when we meet with the doctor in a few weeks, he uses the words "Complete Response."

What's next? Hanna will go back on Oral Chemotherapy, administered daily, 21 days on, then a break for 7 days (one round), then repeat. And keep repeating. This will continue for a minimum of two years, but likely for the duration until she stops responding to treatment. Then other treatments will be looked at.

She will get a local blood draw monthly to make sure her body is tolerating the Chemo well. And a full blood test to check for cancer cells every three months, including a check up by the local Oncologist. Mayo wants to see her at the one-year mark and on the anniversary of her Stem Cell Transplant every year thereafter. (We're already planning our trip back in September. Road Trip anyone??)

Dr. Buadi told us some other things too:

- If the Amyloids have not attacked the heart, liver, and kidneys prior to Stem Cell Transplant, they usually do not attack them at all.

- Bones take about 15 years to replicate and strengthen. So, she is a fall risk still and probably always will be. But he also said I am one as well and him too. None of us need to be falling.

- The Stem Cell Transplant may have wiped out her autoimmune problems, at least temporarily. Hanna is going to introduce small amounts of gluten and dairy back into her diet over the next few months and see what happens.

- Her immune system should be at about 2/3rds of normal right now. He told me I didn't have to wear a mask any more WOO HOO!! WOO HOO!! (Unless I'm in a place where it is required). And Hanna only needs to wear one if she is around a lot of people or someone who is hacking and sneezing and running and obviously sick. We actually spent time on the way home listing the things we want to do now the restrictions are lifted. See our kids more. Movies. Concerts. Ball games. More church attendance. Parties. (We need to make up for all those Christmas Parties we didn't go to!) Guests. 

I'll skip around here now. In late December, we met with our local Neurologist, the Doctor that actually made the diagnosis. We learned that there is no treatment for Neuropathy. His job is to determine its cause and that cause is then treated. Amyloidosis caused Hanna's neuropathy and it has now been exterminated. It is a very slow process, but her neuropathy is indeed healing. Last week I heard, "HEY!  Look! I can move my toes!!" And her toes were clearly wiggling, something she hasn't been able to do in a long, long time. We are hoping she will be back to walking normally, albeit with a cane or walking sticks, by summer so we can resume our hiking and Geocaching adventures! She continues to do Physical Therapy Exercises and walking daily.

Well, that was a lot of text. Here, have some delightful pictures:

No trip to Med City can possibly be complete without a visit to Flapdoodles, which we believe is the best Ice Cream shop in the entire United States of America. Plus there is absolute proof that ice cream kills cancer cells. I kid you not. I read it on the internet. Google it.

Traveling in a cool "on fire" wheelchair is always a challenge, but we are getting the hang of it. Here, a TSA gal is checking to make sure Hanna is not really an international terrorist posing as a cancer patient! She was searched four times on this trip. Both coming and going before the flights, and twice at Mayo. (The Mayo Clinic is quite secure due to some weird street violence that hit other hospitals in the Minneapolis and St Paul areas last summer. Better safe than sorry......)

Part of our Med City Adventure included seeing Minnesota in the winter. We were not disappointed. We witnessed a huge ice storm that made our sidewalk impassible. (We tromped through knee deep snow to get to our rental JEEP instead of risking the ice.) A near white-out as we drove back to the airport from Rochester (1.25 hour trip took over 2 hours). And we got to play around with flight delays. But we survived, all is well, and the adventure was fun. Above is the view out of our plane window as they deiced the plane.

And last, but not least, the hugest outward sign of recovery is Hanna's hair. It is coming in faster than expected and is looking mighty fine I think. (The grandkids will still think this is a gross picture.)

I'm not sure we'll have a lot to blog about going forward. Everything should drop back into a routine maintenance sort of pattern. If something comes up, good or bad, sure, we'll take a picture and write a blog.

Your prayers are working. We have witnessed miracles, in fact, nearly daily while we were getting through the transplant. Thank you so much! We pray for those that pray for us. Please keep it up! Faithful prayers work!

Hanna's 2-Bits:

Through this cancer journey I've felt God whispering "This hardship will be but a 'small moment'. . . " 

This message has given us hope, which hope has been like a lantern we have carried with us to light our way through the dark days.

I am forever grateful for such a tender mercy from my Jesus.