Yikes.
I knew I had been deliquent in typing here but didn’t realize how delinquent.
Apologies if you have been checking here and not seeing new info.

Last time I typed I’d just started the prednisone for my face rash and the rash was starting to be less awful.
The good news is that the drugs did amazing things and my face rash faded away really quickly.
I still have some residual itchiness, especially when I have to mask, but it is better.
The bad news is that the steroid pills were one pill too far for my stomach.
The last day of the short course of steroids I developed horrible stomach pain.
This led to a couple of really bad weeks.
I dropped more weight.
Sleep was bad.
It was brutal.
Thankfully we are now past all that.

So.
We had another blood DNA test done after Day 60.
My blood was at 94% donor and still 6% me.
They took me off my last anti-rejection medication to give the donor blood a boost to take over that last 6%.
Going off that drug makes the chances of GVHD (graft vs. host disease) higher but worth the risk to get my blood to 100% donor.

I also got some very big news that threw me for a bit of a loop.
Life had been very focused on day to day getting through things but once I came out of the stomach issues and was feeling better I started looking forward.
The schedule that I was working with was getting through the first 100 days and then I could start easing back into normal life.
I asked my doctor about his recommendations regarding returning to work and I learned that I was very very wrong.
He said he doesn’t want me to go back until six months post transplant which would be Day 180.
This scrambled my brain because that is 80 days longer than I had expected.
He said if there is no way to make it work and I’m healthy enough he will consider letting me start back earlier part-time.
I called and talked to the amazing leader of the Trusts and Estates group about how things have been going and to discuss the idea of my not returning to work until late July.
She made me cry.
She said we need to remember to keep my health first and listen to what the doctor wants.
I think I’m feeling guilty for how long that will mean I’m out.
But best to go back completely healthy instead of adding the stress of work on top of trying to get better.
Early May is my Day 100 bone marrow biopsy and I meet with my doctor to discuss where my recovery is at on May 14th.
At that time we will make decisions about when I can return to work.
Beyond the work stuff I need to keep masking and while I can go out to public places best practice is to avoid crowds.

Lenny did come home.
He got here during my stomach issues so he was underwhelmed with the attention he got since he had had two amazing people giving him tons of attention.
Thanks again to Deb and LeAnn for caring for him!

So overall things are okay.
My taste buds are still off but getting closer to normal.
Super exciting event just this morning, I had a mint (a mini peppermint Altoid) and it didn’t give me a terrible aftertaste!
Lots of foods have been tasting okay when I eat them but the aftertaste has been so awful that I have had to avoid a bunch of things.
Fingers crossed my mouth will be back to normal soon.

Got the results of the one month bone marrow biopsy yesterday.
Things are going well.
My bone marrow is now 100% donor.
My blood is 90% donor and 10% me and that will slowly change with time to 100% donor.
And they found zero evidence of cancer cells anywhere in my bone marrow or blood.
So now we just have to keep waiting for everything to develop and all the new blood cells to grow and if all continues to go well, in 64 more days I will be considered mostly out of the woods.
There is some risk of issues developing after the first 100 days but the risk isn’t big.

Got a really crappy rash on my face this week.
It was brutal itchy but yesterday I finally got some decent drugs and it is doing much better today.
Fingers crossed the six-day course of steroids wipes it out.

Um.
That’s about it.
I’m able to eat most anything I want now, my mouth and throat are essentially healed up.
Sadly my taste buds are not back to normal yet but I’m finding many things that taste like I think they should so eating is better.
I think I’ve finally stopped losing weight.

Next big decision I need to make is when is Lenny coming home.
I hate to admit it but with everything happening I haven’t missed him as much as I thought I would.
He is a bit needy and I’ve needed to give all my energy to me so far.
Soon.

Well.
I’m home.
Got sprung from the hospital last Sunday, February 16th.

My sister Beth is here helping me and things are going well.
Still healing from the mucositis so I am limited in what I can eat but that is improving steadily so I have more food options.
After eating so little for so long the battle is to try to get in enough calories to stop losing weight while not throwing everything up.
The nausea is still really terrible.
Add to that my out-of-the-hospital-adjusting-to-environmental-allergies-again mucus issues and things are very tricky indeed.
My taste buds are still off but I’m finding more and more things that taste like I think they should so I feel I’m ahead of the game there.

The good news is that things are slowly improving so I’m hopeful there will be a time that things might begin to feel normal again.
My white blood counts are still low but slowly improving and my hemoglobin and platelets are increasing steadily all on their own.
All good signs of good engraftment.
Next Monday is next bone marrow biopsy (results on Friday) and then we will find out exactly how well my new stem cells are doing.

On Wednesday I got my dual port from the hospital removed and the area is a bit of a mess but mostly scabbed over so tomorrow I will get to take my first completely normal shower.
My last shower I got too hot and got confused and made things hotter not colder but I survived without any injury or vomit.
I think I might have freaked my sister out a bit but she was a champ getting me from shower to bed to recover.

So.
I’m home.
Things are slowly improving.
Seventy-One days to Day 100 when I can rejoin the world.

Hello, Bradley here, because Ann’s hands don’t want to type.
Ann’s had a rough go since the last blog post. The past weekend was The Rock Bottom. But over the past four days, this is what’s happened: Ann is off the pain meds; Ann is off the IV nutrition; the mouth sores are mostly gone; apple sauce and chocolate pudding (the good, cake-batter-y kind) have been consumed. This is all to say: plans are in place to go home on Sunday.
So: port removal on Friday (fingers crossed); working on able to eat more food; working on more mobility; and having the last of the IV meds changed over to pills. She reports, “We’re close”.
Saturday Ann’s sister Beth arrives from Madison, and will be helping Ann adjust to life back home, and be her roommate.
That’s a rough report for now–more later after Ann is back in her home, and her fingertips don’t hurt.

Big and exciting news!
The mucositis is still raging strong but we are switching from the fancy dahulu to my favorite of the opioids, morphine.

So yesterday went pretty well once my PCA of opioids and dreams was up and running.
Was a bit of bummer around 11pmish when I discovered the pain level had outgrown my dose but that is worked out now.

Things are definitely improved generally.
Will have a several more days of this until things bottom out.
Until I have white blood cells who can fight the mucositis it will continue to worsen.
Once I start developing some white blood cells things will improve.

Forgot to mention I got a platelet transfusion yesterday morning.
My shower yesterday kicked my ass so I thought I was going to have a hemoglobin drop today but I did not.

So when I was last typing here, things were a bit of a mess but I thought there was an upswing on the way.
Unfortunately, I was wrong.

The high fever slowly went down but the infection protocols were happening which meant several days of IV antibiotics.
Also with my dropping white blood counts and the fever I started hitting the “sepsis trigger.”
In an effort to reduce sepsis in the hospital there is a sepsis trigger.
When triggered there is a short time window where a series of blood tests and vitals checks must occur.
So far I have had four sepsis triggers.
No sepsis.
No infection to have sepsis be a complication.
Anyhoo.

So I typed that we were waiting to get to High Noon on Wednesday so I would be done with the 60-hour Cytoxan chemo and flush process.
We got to noon but because of the fever things and sepsis things I had to continue IVs.
2:15pmish I was finally IV free!
I showered!
I tried to nap but couldn’t fall asleep.
At 4pm the nurse arrives with an IV bag.
ANOTHER IV BAG.
Had to do last antibiotic IV.
Fine.
Short IV, only 30ish minutes.
Ninety minutes later I’m finally freed from that IV and I am hopeful I can maybe get some real sleep now instead of waiting for “bedtime.”
Struggled to fall asleep.
Was thinking about asking if we could do last vitals and meds at 10pm instead of midnight so I could sleep early and get a nice chunk of sleep before 4am vitals and blood draw.
At 9pm the nurse comes in with ANOTHER IV BAG.
It was time for my new two-hour anti-something IV bag now that the Cytoxan is done.

So Wednesday was a very rough day mentally.
Thursday was actually close to what I had been expecting.
Rest to recovery from the Cytoxan process, fairly quiet, many naps.
Unfortunately, on Thursday I started getting the initial symptoms of mucositis.

There is a lot of talk about chemotherapy and mouth sores in the world.
I had no issues with mouth sores during my first chemo (outpatient at MN Oncology).
I had no issues with mouth sores during my second round of chemo (the one that happened the first four nights I was in the hospital).
When I had arrived at hospital I was given a simple saline rinse to use four times per day to help prevent mouth sores which I used diligently while doing extra soft teeth brushings.

Then came Thursday.
Throughout the day on Thursday my jaw began to ache and the inside of my cheeks, especially the area close to the joints started to get super sensitive.
Then the world turned dark.
I will spare you the details but I will say that sobbing semi-hysterically when half your face, your mouth, your throat and your neck are are in agony…that is a LOT.
I am not done with my mucositis journey BUT I have a PCA (patient-controlled analgesia) pump full of dilaudid and hope.

Oh and my hair is gone!
Saturday morning I brushed back some hair and most of it stayed in my hand.
I had no need for a witness but my friend Ranae was coming by to bring me clean laundry [thanks again Ranae] so I waited until she was here.
Kennedy (the NA) hadn’t ever gotten to do a clipping so Greg (the Nurse) had her do it.
She did an excellent job and we had fun.
Good to have that done.

So after the transfusion on Friday I had two days of waiting.
In theory those should have been simple days.
Just waiting while the stem cells start rooting into the bone marrow.
BUT it turns out there is an automatic protocol thing that I didn’t know about…they stopped giving me anti-nausea meds.

My body was not ready to be done with anti-nausea meds.
For Day One and Day Two they gave me lots of Ativan and I took lots of naps and didn’t eat a whole lot.

Today (Day Three) was first day of my last course of chemo.
And I am back on regular anti-nausea meds!
This chemo is a two-day thing to help my new cells and old cells merge.
I have IV drips going non-stop to make sure that I pee a certain amount every two hours.

So since midnight last night I’ve been tethered to multiple IVs.
To help spice up the day, I developed a fever.
A pretty good sized one.
It got me LOTS of extra tests and cleaning and a guy with an x-ray machine even visited to take a chest x-ray.
They added another IV bag to the pile (an antibiotic).
Once I hit 103.3 I got Tylenol and things have gone down to the 101s.

So.
Been a bit of a rocky few days since the transplant but nothing too serious.
Just have to get through another 38 hours of constant fluids so I pee every two hours.
Fingers crossed the fever doesn’t spike back up.
Then I will be done with the third and final round of chemo and things will hopefully run a bit smoother.

Friday, January 24, was Day Zero.
Lots of waiting around for the stem cells to arrive.
They finally showed up…3pmish I think.
Was a 30 minute infusion and I had 10,000,000 new stem cells in my body looking for places to settle in.
All a bit anticlimactic.

Days -2 and -1 were pretty uneventful.
Just waited while the chemo cooked.
Skin developed weird textures.
Hair started to feel weird.
Mouth got odd.
Struggled with some claustrophobia.
I have always known that I am an open windows person but until stuck in a hospital room with no fresh air for a week I didn’t realize quite how serious it is for me.

So much waiiting.