Day Two in the hospital was quite uneventful.
Naps.
Pills.
Blood draws.
Several rounds phosphate infused water because my phosphate dropped way down after the first chemo IV.
One preventative infusion in the morning.
John brought me cookies and party mix!
Yum.
Thanks John!

We are now doing the second overnight chemo infusion, it will finish at 4am and then we start the round of blood draws that get put on ice and run to the lab.
Science man.
It is really really impressive stuff.

My dairy thing got straightened out today so I can order more things off the menu which is nice.
My feelings about the food remain unchanged.
It’s fine.
I can tell my appetite is starting to wane and with tonight being second chemo day I think my appetite will probably crater tomorrow.
When that happens it doesn’t really matter much what I eat, just need to get some calories in me so not very exciting food isn’t a big deal.
And there are enough things on the menu that I still have many things to try out.
I did discover the lemon flavored ice today and it is delicious, first item I am excited to repeat.

Fingers crossed that any side effects that show up are easily manageable.
Losing all my hair is not quite a given but almost.
Won’t happen for probably 10-14 days.

Rightyho.
I’m in the hospital.
[Thanks for the ride Jodell!]
Had a procedure this morning and they gave me a “tunnelled central venous catheter” and then I got to my room where I will be for the next month or so.
This catheter is similar to my regular power port except it has two ports on it and they are of a larger dimension.
The room is fine.
Lots of people had told me how great the rooms are on this floor and, well, I think they oversold it a bit.
Maybe I just haven’t seen many hospital rooms.
I’m mostly unpacked and starting to feel sort of comfortable.

Had a very busy few days leading up to today.
Did many practical things.
Easy things like a car wash to get the salt rinsed off the vehicle so he won’t be sitting and stewing in a thick layer of salt.
Slightly more involved things, I finally have a signed Power of Attorney and Health Care Directive!
[Big thanks for Miriam for her help there.]
And hard but not as hard as I thought it would be, I dropped Lenny off to Deb and LeeAnn’s house so he will be loved and cared for and hopefully share a bit of cat joy back.
[Huge thanks to Deb and LeeAnn.]

So.
I got my life mostly in order and am now in my hospital room.
They are doing vitals every four hours or so and every few hours I get handed a wee cup with pill(s) to take.
Got an IV antibiotic this evening to prepare for chemo.
In an hour or so they will be starting next IV which is another preventative drug to help my body handle the chemo.
THEN at 3am they will be starting the actual chemo IV.
I found out why they start it in the middle of the night!
To help them with the dosing they will be doing blood tests at very specific times (within 5 minute window) to track how my body is metabolizing the chemo drugs.
Because of the schedule of those tests they start the drugs in the middle of the night so the daytime lab technicians and pharmacists are around to do the testing and planning as soon as the blood is drawn.

MIxed feelings about the food so far.
Dairy and I have a complicated relationship and I told them that when I consume dairy products I take Lactaid.
That got into my chart as NO DAIRY ALLOWED.
So when I called to order lunch I was told I could not have an egg and cheese muffin sandwich due to my allergy.
When I called to get some supper I was told I could not have a chocolate chip cookie becuase the cookies use milk chocolate chips.
This is a problem.
Nurses have told me they have orders to provide me with Lactaid whenever I need it but first a higher authority has to get my chart changed so the kitchen will allow me to have foods with dairy.

We are coming to the end of Day -7 and things are well.
Today was supposed to be Day -6 but there has been a hiccup in the plans for when we will receive my Donor’s stem cells.
I did find out today that my 22 year old donor is female lives in Germany.
Unclear if the delay has to do with the timing of her donation process or the travel to get the stem cells from Germany to Minneapolis.
This means that my Day Zero won’t be on Thursday but it will be on Friday.
That means Day 100 will not be on Star Wars Day but it will be on Cinco de Mayo.
This is not serious, a small bummer but not serious.

Everything went well with last week’s appointments and tests.
So many appointments and tests.
No syphilis!
No West Nile virus!
Sixteen vials of blood in one sitting is my new record.
The doctor has cleared me for transplant.
I think my insurance has also already cleared the transplant.
My donor is cleared and on schedule.
They did pre-admission blood work on Friday (only two vials of blood that day) and a swab and all is fine there, no Covid, RSV, flu A, or flu B.

So I have a few days of miscellaneous appointments and projects and packing to prepare for a month in the hospital.
Going into the hospital on Friday.
On Friday I will get new catheter put in so they have multiple (and bigger) ports to use for putting things into me.
Chemo starts on Saturday…initially was told it would start at 4am but it might actually be starting at Friday midnight.
The pharmacist told me that there will be IVs starting at midnight and 1am and I’m not sure if those are the chemo or pre-chemo things.
There are many things that are slightly blurred in my brain and I’m okay with that.
They know what they are doing and my primary job is to do what they tell me to do and follow the rules.
Once I am there other people will be running the schedule and I don’t need to worry about the specific times of things.

Hm.
Other random items:

I’ve finally got all my seeds painted for my Marvin crop art.
Need to paint the board and then it will all be ready to go with me to the hospital to give me something to do while there.

Most people keep the catheter in when they are sent home so they have quick access available for follow up appointments. Dr. J said that if things are going well that they might take that out before I go home since I have a regular port.
That would make things at home a LOT easier so fingers crossed for that.

I learned that over the next year I will have to redo every vaccine.
Getting a new immune system means needing to go back and get every vaccine I’ve ever gotten.

I had been told that my Donor and I match on eight different blood markers, blood type, and a specific antibody.
I asked my doctor if there was anything that they test for that we don’t match on and he said nope, we match on everything that they test for.

I made a difficult choice.
Have the option of a stationary bike or treadmill in my hospital room and after a LOT of overthinking I went with a treadmill.

That’s all I can think of for now.
Very thankful that things are about to happen.
When I got the dates for the transplant my brain spiralled a bit.
It is a LOT to absorb and the last couple weeks have been a bit rough mentally.
But now that things are counting down and I’ve got a lot of practical things to take care of I am feeling more stable about it all.
I’m confident that the end result will be good but the process…the process is going to be rough.

A new year.
Historically I have put a LOT of attention into the wrapping up of an old year and welcoming the new.
With everything going on I completely ignored it this year.
Got information last week about the stem cell transplant and everything has been feeling a bit too real…have been struggling to absorb.

Last Monday 12/30 I had my second bone marrow biopsy to make sure I am ready for the transplant.
I am scheduled for my “workup week” next week for testing to make sure I’m physically able to do the transplant.
The literature says that workup week is 6-8 hours per day and thankfully that is NOT at all what my schedule is.
I have a full day of meetings and tests on Tuesday, half a day of tests on Wednesday, and an appointment with the Doctor on Friday.
Then we wait for the insurance company to pre-approve the transplant.
I’m scheduled to be admitted to the hospital on Friday, January 17th, two weeks tomorrow.
The only thing that happens on the 17th is that they install an additional line for injecting things into me and then at 4am on the 18th we start the pre-transplant chemo.

My Donor is all lined up and was scheduled for their final approval physical on Monday (12/30) and to start their end of the process.
Will find out next week if everything is proceeding there as planned.
Was told that normally we would hear sooner but my donor is from outside the US so different timelines apply.
Donor is scheduled for stem cell collection on Wednesday, January 22nd.
Thursday, January 23rd is to be “Day Zero” for me, the day I receive the stem cells into my system.
Then starts the 100 days of waiting while the stem cells populate my bone marrow and grow me a new system.
Well…I will be waiting.
The medical team will be monitoring for infection and rejection and testing and such.
Won’t be in the hospital for the whole time, am just there for the first 4-6 weeks then will be at home.
Note that with this schedule Day 100 happens to fall on Star Wars Day and I am taking that as a good omen.

Fear not, Lenny will be well cared for, he is going to be crashing with my friend Deb and her sister Leann while I’m in the hospital.
Super weird they won’t let me bring him to the hospital with me.

Seven weeks of Treatment complete!
As with most of life, feels like it has been both longer and shorter.

When last I typed we were in the sixth week and I had just learned of the magic of IV steroids.
Got that on Wednesday and felt GREAT until it wore off Friday evening.
I then slept for 16 hoiurs and thankfully have had no serious back pain since.

Finished the Round Two IV chemo treatments last Tuesday and am thrilled to report WAY fewer side effects than I had had with the shots of the first round.

Lots of improvements happening in my blood numbers.
Time will tell if the numbers in my blood tests accurately reflect what is happening in my bone marrow.
Fingers crossed.

Since I am feeling better this round I am pushing to spend more of each day vertical.
Have met some friends to walk around at Mia (Minneapolis Institute of Art).
Been nice to be out and about a bit.

Okay.
Not ideal but working.
If you want to comment on a post or ask a question it is there for the last few posts.
The trick is that you have to click on the Post Title to open it to show just that post (and there will be list of other posts at the bottom).
When you are looking at an individual Post, there is a Comments option at the bottom.
I’ve done all I can for today with this computer nonsense.
Will see about altering the layout so it shows list of posts with just the most recent one open…I think the Comments bit would then show right when the page is opened.
Wish me luck.
P.S. I think I have it set to automatically post all comments without requiring approval but not sure.

If you are wondering the answer is yes, I have started working on a small crop art piece for the 2025 Fair.
I am doing a portrait of everyone’s favorite Martian, Marvin.

If you are not familiar with crop art (super unlikely if you know me, but sharing in case) you can see my previous submissions at www.cropart.com and look for me under the Artist Galleries.
If I go crazy and decide to figure out how to post any pictures in here I will likely share progress photos at some point.

Now, my attempt to add Comments on my last post failed so going to go back and review all the settings to see if I can get it to work here.

Well.
Blood transfusion last week helped things.
Hemoglobin is still up at a decent level this week.
I had my first decent platelet number on Monday since this whole mess started.
So.
Monday (12/2) I got my first IV infusion of chemo drugs starting Round Two, and restarted the daily chemo pills.
So far my side effects haven’t been terrible but I think that has something to do with a back pain problem that arrived on Saturday night.

Nasty bit of back pain arrived while Lenny and I were minding our own business, just curled up in bed with a book.
It was higher up than my normal low back pain I have had since 1993.
Being higher up it did NOT like it if I took deep breaths and I would get stabbing pain when trying to breathe so things spiralled a bit.
Because of the goal to not take Tylenol or ibuprofen which might mask infection or whatnot I was really struggling.
I iced.
I heated.
I tried muscle relaxers.
I tried bargaining with deities.
At 2:00amish this morning I sent a begging message (with ZERO curse words, super impressed by that) to oncologist office begging for help.
Note that they were aware, I had talked to an on call doctor on Sunday and a PA on Monday and a Nurse on Tuesday and they had all given ideas to try to manage the issue.
Short version, I met with a PA before my IV infusion this morning and she gave me leave to use small doses of ibuprofen and Tylenol AND added a steroid to my things going in via IV today.
I have no words to express how much better IV steroids are over pills.
I feel human again.
It isn’t completely gone but the pain and aches are dramatically reduced.

There we have it.
Round Two is off and running and I have regained the majority of my optimism.
Will see how tonight goes and if I get another 1/2 dose of steroids tomorrow.
Fingers crossed.

So.
Been having two computer issues:
A. My laptop doesn’t like letting me log in to type blogs; and
B. I didn’t realize how much I don’t really like sitting in front of a computer unless I’m being paid to do it.
But I’m back and going to try to do this more regularly now that my computer has let me back in to post.

The first four week round of chemo went well.
It is beyond me to explain it but when Dr. L explains it to me I know that things are happening that we want to happen.

Yesterday was to be Day One of second four week round of chemo mostly identical to the first.
Last week I got a port installed so we could switch to IV transfusions instead of the shots…those shots and I did not get along at all. I still have bruises and weird tender lumps in my belly.

I had a bit of a zero energy weekend and when I went in yesterday to start the chemo my hemoglobin was down to 6ish and other numbers had dropped to a point where the only agenda items for the day were to first get a blood transfusion and then a couple of new preventative medicine prescriptions.
The infusion people couldn’t get me in so I got to go to the ER to get a blood transfusion.
Everyone was very nice and it all went well but it took hours longer than the infusion place and no snacks.
I then gave the Costco pharmacy hundreds of dollars and finally got back home.

Today I went in for blood test and my hemoglobin was all the way up to 7.5 so all set for now.
Started an anti-fungal drug and a antibiotic to go with the anti-viral that I’ve been taking for four weeks.
We now let the anti drugs do things for a few days and on Monday (12/2) we will start next round of chemo.

Okay.
Now that I’m logged back in here I’m going to go as long as I can with restarting my computer and losing my login.
Fingers crossed.
AND tomorrow I’m going to try to figure out how people can leave comments.
If I know people are looking at this and we interact I think it will help me open my laptop more often.

I knew that chemotherapy was a lousy business but I can now speak from direct experience and it really sucks.

My first round of shots are done.
I got 14 shots in my belly (2 at a time for seven days).
The bruising and rashes that came with the shots were quite dramatic.
Instead of repeating that, for the next round I will be doing IV infusions.
They take a bit longer but should be less uncomfortable.
Getting a port placed on November 20th.
Curious to see how long it takes for the belly bruises and rashes to clear up.

Still doing the chemo pills.
Unclear exactly what is causing what side effects but I think the low grade up and down fever is connected more to the pills than the shots.

And I wondered if I would get to experience the “sensitive skin” that is mentioned a lot.
I’m sure that it takes many forms but for me it mostly has meant that everything itches.

So.
Things took a bit of a dip for me over the last seven days but last shots were on Tuesday morning and on Wednesday I got another blood transfusion so things are on a bit of an upswing.