Tueday

TUESDAY

Today was a standard day. I wake up at about 6-6:30am. But it takes an hour or more for my body to kind of get up to speed. Dawn checks BP, O2, Pulse and temp every morning and it’s been just fine.

My day is nothing exciting: some time working at my computer on business stuff and sometime just flopping down and relaxing.

And, yes, I did do some flight training this afternoon in the living room. It’s going to take a bit of time, I see, to get the hang of controlling my drone. Same as when I got my real pilots license many years ago, I guess.

Dawn did take me for two rounds in our circle tonight and that went fine. I do need to walk.

Nothing exciting….

Love you guys,

Bob 

Monday

MONDAY

Pretty much a usual day. But, ‘usual’ days are just wonderful. I am feeling a wee better every day; but, honestly, I don’t want you to think that I’m even remotely close to grabbing a tennis racket. Maybe, in September. That’s my hope.

This morning we met with my pulmonary doctor. He had me doing an O2 test that meant walking for 6 minutes and I passed with flying colors. It stayed at 94 for most of the test. Quite a difference from a week ago. Plus, my chest x-ray from Friday showed that the lungs were definitely improving. We left quite encouraged.

Then back to the same building this afternoon to meet with my infection specialist. He was happy too. But, has reservations. He still does not know with certainty what caused the infection I had in the hospital. He wanted to do a lung test [invasive under anesthetic] but nobody else did. He is worried that there could be a lingering bacterial or other kind of infection that is still there; although he says a test now would probably not show anything.

What do you do? Four doctors who don’t all agree. We’ll see. But I am betting that Dr. Singh will push ahead with Chemo #3 on the 6^th.

I am eating OK. Some things taste right. Others don’t. And, getting work done at my computer. And, ‘taking it easy’ as Dr. Singh says to do.

We got a new knife from Amazon which I have been looking at. It’s a Mercer vegetable knife which my research says is best for all around chopping and endorsed by my cheffy brother-in-law and used in culinary schools. No, I’m not cooking yet. Nor, driving for that manner.

Tomorrow I’ve got a larger micro SD card and better reader coming for my drone. So maybe tomorrow I’ll work more on learning to fly my drone. I am just starting. I promise that before I fly by your house taking video, I’ll let you know so that you can put on whatever show suits your fancy.

Thanks for loving us, praying for us and helping us with rides again.

Bob

SUNDAY

Sunday –

Today was pretty much a repeat of the last couple days. I could hope for a wee bit better; but the same is OK. After a journey lasting months, you do get kind of hyper-tuned-in to how your body is.

But today, I did get out!

·       I got the XMRadio in one of the cars working again.

·       Dawn took me on an outing in the car to the car wash....especially to get the carpets shampooed after I barfed all over the passenger side carpet on the way to the hospital on June 10.

·       Then we stopped at the gas station for Dawn to fill up her car.

·       Finally a stop at the market for groceries. I did not get out at the gas station or the market, of course. I am comfortable just to sit in the car.

Maybe the biggie today was a shower at 5pm. I have not had a shower since I went in the hospital. Taking a shower there is pretty much not possible. And, until I got out last Monday, I just have not had the energy. Was I getting kind of ‘ripe?’ I dunno. Likely a wee bit but at least Dawn was not complaining.

Off to a couple doctor appointments tomorrow.

Thank you for your prayers!

Bob 

PHASE 1 - Day 21

March 26

I wish I had something interesting or exciting to report today; however, as Dr Mandal says, " we are just waiting." Waiting for numbers to inch up among other things. I got 4 laps in today which was good but eating is still really hard...no appetite.

If you are new to the blog, just hit the three MORE bars at the bottom right of the FB page and see more notes.

Thanks for your prayers and love

PHASE 1 - Day 20

March 25
Things are pretty steady now with hemoglobin at 8.1 and platelets at 48. WBC still at .3. That should start

coming up soon. The only battle seems to be low blood pressure the last couple days which does zap my energy somewhat. Oh well. Eating will probably be a struggle as long as I am here. The nurses are all just lovely people which helps a lot. 
Dawn is coming tonight with dinner which will be a welcome change. Plus we'll do a strip and scrub --- me, not Dawn! --- and get a change of clothes which will be nice. Oh, this is my room.

PHASE 1 - Day 19

March 24

DAY 19 - I do now have a wee bit more sense from Dr. Mandal where we're going. Some tests apparently came back with some good and some. intermediately good news. No bad news. I'll be here in Sherman for probably another week. If all my numbers look good, I'll go home for a week. Then I'll come back for another week of less intense chemo called consolidation chemo. I will not need a bone marrow transplant which is the ultimate cure, of course. He was talking fast and I was trying to cipher out the essential elements and will share those as we talk again tomorrow.

After walking 5 laps and feeling pretty good last night, they found that my hemoglobin had dropped back to 5.0 and platelets to 15 so I got another transfusion today. Bummer. But, it's just how things go.... not bad or good.

On a lighter note, you might wonder how nights are. 
Since I still have IV's 24/7 I'm up to donate to the lemonade stand maybe 5 times a night. The nurses are in to change bags at least once and to fix the beeping machine at least once ---- when I can't. And, somebody is in to check vitals in the middle of the night. So there is no continuous sleep but, I actually get along pretty well and it doesn't bother me too much

UPDATE 5pm - Dr. Mandal just came and talked to Dawn and I and brought great news: my bone marrow is clear of leukemia and most all cells are gone. So i have to complete of the program now with a week for my body to start producing red and white blood cells on its own. Then the week home followed by a week of follow-up chemo as part of the protocol. Then done. This is an answer to hundreds of prayers and encouragement from all of you. I am humbled. 

 

PHASE 1 - Day 18

March 22

You might think boring. Well, it kind of is. But then there's always the busy part of being in the hospital, Dawn's visits and other distractions.

Here's a quiz for you.
If your night nurse comes in later in the evening and offers to show you how the remote control with lights and TV works:
A. She wants to be helpful but has no clue how long you've already been there. 

B. She has not really looked at your record. 
C. She has worked as a nurse less than a year.
D. All of above.

Yep, you guessed it. She was very nice and very clueless in a number of ways. Luckily I am pretty much a low maintenance patient at this point except for the lemonade stand.

My white board says, "status quo" under what's important and that is pretty much it. But tomorrow will be an important report day.

PHASE 1 - Day 17

March 21   

Can you believe what 3 of my best friends did? Happy Birthday 5 stories below my room. Zoom in. They are holding signs and balloons. It was so awesome and thoughtful. Kisses to Susan, Mary and Virginia. It made my day. This is just another day for the most part although I had a slow start this morning because my BP was a kinda low and then I took my normal BP med which sent it lower so had the spinning head for a bit. Good now.

Know that I read and appreciate each comments from you. Hospital food is indeed a challenge when your appetite is normal. But when your appetite is subpar, it is a struggle. It's not about will, it's about being snuffed out by drugs and being patient. I think Dawn is bringing something home cooked tonight so I'll see if that helps

PHASE 1 - Day 16

March 20

I guess the biggest news is my hemoglobin is up to 57. It's never been close to that. And, platelets are steady at 7.2 WBC is .3 but it's meaningless at this point. I do feel better. So now it's 'wait and see.' Hey, the nurses did show me how to silence, reset and restart my own IV machine. Yippee. It's yaps all the time since I always have a bag of something going. Tomorrow Dawn and I will strip and scrub which hasn't happened for a few days so I am looking forward to getting a bit refreshed on the outside at least. I have walked .4 mile already today and when Dawn gets here will get in at least another lap.

I have my old phone back and working.... but hopes of a new phone are fuzzy at best.

If you jumped on this FB Group later and want to know what happened from the start, I think you can click on any post and it will take you back to this "Bob's Journey" blog.

Hugs to all, Bob

PHASE 1 - Day 15

March 19 - pretty much a typical day. What do I say? Ordering food at lot of which I try to eat with limited success; bags getting changed and pills; Dawn in and out; and some walks....got about. 1/2 mile yesterday.

This is a really important day. Dr Singh will do a bone marrow biopsy at 8am. And I will get the full Popeye dinner today: the hemoglobin and platelet transfusions. Ah ha, now I know why I got up in the night and almost fell on my keister because I was unexpectedly dizzy. But this is good. It means the chemo has whipped out my ability to produce blood cells. The next milestone is Monday when we get the

report back.

My phone went on the fritz so will not likely have a new one until late today. And may not feel like firing up the big boy. But iPad is good for contact.

My strength comes from my Heavenly Father but my energy and optimism comes from you.. Each of you.

This is my idea of spinach. Hopefully by tonight I'll be back up again. BTW, Costco totally messed up my phone upgrade so I'll be without a phone for at least another day. It's a long story but learned my lesson---Verizon actually knows what they are doing they are getting it straightened out. I have a hard time reading here so back to Gunsmoke, Chips, Quincy, Perry Mason, Bonanza, Mash, Rockford, etc while we work the 3 Legged Stool. Remember that? #9 secret.
 

PHASE 1 - Day 14

March 18 -  First the update And then the story. I am right where I should be: just enough hemoglobin, RBC and other goodies to be OK. I've been up a wee bit more today and can hack 1 Ensure plus 3 bites of. PBJ instead of one. Dawn is here both morning and after work and she's the only visitor. Nobody is in my room without gloves and mask. I expect to have another Bone Marrow Biopsy on Thursday and that will give us hard information on where I am really at.

This morning I was reflecting on how my friends have responded with text messages, offers to help, love, and prayers, dozens of cards. I have to say that I am both embarrassed and truly humbled. I told Dawn that this morning. She said, Yeah. And, what would you be doing?" OK...at least the same or more. So I get it.

My family prays and loves me' sends me all kinds of notes.. My Sun. City family is a "family" that we did not expect when we moved here but is beyond measure of love, encouragement, caring and prayer. It's not luck. God's plans are often way ahead of ours.

PHASE 1 - Day 13

March 17 - THE STORY --- So., Yes, I am hooked up to IV's 24/7. There's always fluid but then all kinds of different bags for this and that, off and on, throughout 24 hours. Picture this: your "pole" is always with you and will likely be for a while. So, I thought I'd name her, "Jane." Huh? That was my mom's middle name; and who better to be at your side than your mom.

If I am getting IV's all the time, I'm peeing all the time, right. Thus my "lemonade stand" is in. The bathroom. They,... of course, measure everything. Sometimes the urge can be rather important. Does the Johnson make it to the lemonade stand in time every time. Happily, pretty much, mostly, yes.

But, here's the key. Jane has a power cable and tubing to me. There's an extension cord running from the wall to charge my gadgets. And, there's the TV remote-bed gizmo-nurse call dohicky , I always make sure those things are lined up so not to tangle when a quickie trip is needed. How fun what becomes important.

First the update And then the story. I am right where I should be: just enough hemoglobin, RBC and other goodies to be OK. I've been up a wee bit more today and can hack 1 Ensure plus 3 bites of. PBJ instead of one. Dawn is here both morning and after work and she's the only visitor. Nobody is in my room without gloves and mask. I expect to have another Bone Marrow Biopsy on Thursday and that will give us hard information on where I am really at.
This morning I was... reflecting on how my friends have responded with text messages, offers to help, love, and prayers, dozens of cards. I have to say that I am both embarrassed and truly humbled. I told Dawn that this morning. She said, Yeah. And, what would you be doing?" OK...at least the same or more. So I get it.

My family prays and loves me' sends me all kinds of notes.. My Sun. City family is a "family" that we did not expect when we moved here but is beyond measure of love, encouragement, caring and prayer. It's not luck. God's plans are often way ahead of ours.

I read all your comments and love you all. Bob

PHASE 1 - Day 10

March 14 - WBC .2 platelets down to 17. Temp OK. All is basically were it should be. Now the task is no infections, fever and weight loss. I have no appetite so that is a big challenge. I did walk a 1/4 mile which was hard but good. So I guess it is just wait, see and monitor now. Dawnie is my rock.

PHASE 1- Day 9

March 13 - My temp reached 101.1 so here come the antibiotics. WBC .2 and a bit of temp and I am really feeling it this morning. But expected. I am in slow mo. My energy is gone now. I'll let you know when visitors are OK again in at least a few days or so. Love you all.

PHASE 1 - DAY 7

MARCH 11- This round will finish this afternoon. They're going to do another echo just to make sure the heart is still as it should be since chemo drugs can apparently affect it occasionally. It's always about keeping track of a lot of stuff.
Dr. Singh was in and had some good news --- albeit it very tentative. IF, big if, I get through this second round OK, they might send me home and continue outpatient with only needing to come into the hospital daily for blood work and tra...nsfusions as needed. You can. Pray specifically for that! Wow.

But, today is Wednesday and if all goes well, I will have a week of feeling very, very down starting likely tomorrow. I say, if all goes well; that means my counts need to come to zero. And, as Dr. Singh says, the bone marrow biopsy in another week is the real test that we depend on. We want to see none, zip, zero white blood cells... no bad guys. So obviously that's went I am down... my body is pretty weak. Then we watch my bone marrow start to rebuild Jedi Knight fighters... good guys....the right kind of White blood cells.
My WBC this morning was .6. It should be 4 to 11k. Hemoglobin = 9.1 --- not too bad ---which helps me feel better now but will go down for sure. Vitals are good.
Won't mean much but my protocol includes Cytarabine [they all call it ARA-C], Mixtoxantrone and Rasburicase plus the 2 pre-chemo drugs given at the same time.
Cheers for now.
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This is interesting. I'm in the bathroom getting human and discover the tops of the window sill and shower are covered in dust. Hmmm. Just like on one of our favorite FoodTV shows with Robert Irvine called Restaurant Impossible where he walks in a failing restaurant, wipes his hand around and finds dust/dirt all over. Well, so bad here... and this is a really nice, newer hospital, but I am allergic to dust and molds and not needing any more challenge than I have now. My observation is often that it's not the people --- who are wonderful for sure. --- it's the system and training. Hey, just like a week ago when they gave me another patients records when I went into the city for our meeting at Rush. Think that set off some HIPA alert bells, sure enough.

PHASE 1 - DAY 6

March 10
Shutting down for the night. Yes I'm connected to something all the time. I did get in about 8/10 mile today butt energy and appetite are definitely slipping as expected. Next round of chemo starts at 12 midnight. and doc says the next week will be a tough one before I start back up which will take weeks. Friends came and prayed with me this afternoon which was very nice. Got the best wife in the world.

PHASE 1 - DAY 5

March 9 - Monday
I am going to try and explain the whole process for you. Then I'll keep track day by day. My blood marrow was producing 5 times normal -56,000- white blood cells 10'days ago. And they were not the Jedi Knight fighters that help us fight disease. Thus leukemia. So the plan is to kill those guys and most of my bodies other abilities to defend itself in the process. Then, we wait and see if my body can produce the right kind of white blood cells.
My oncologists here work with... Rush University Medical School and Hospital in downtown Chicago. Dawn and I met with them last Wednesday and they designed the protocol that is being used.

There are 4 drugs in the protocol which is called induction therapy. I have a pick line with continuous fluids and the 4 drug bags are added. #1 is a nausea control --- 1/2 hour. #2 is a steroid----20 minutes or so. #3 is Cytarabine which is a leukemia drug and runs about 3 hours. #4 is Mitoxantrone ---also a leukemia drug which takes about an hour and is blue.
This round of drugs are given about 12 hours apart and then stopped for 5 days and then repeated.
At about 15 days, they do another bone marrow biopsy --- yeah, they drill a little hole in your hip and take a sample. Sounds weird but it's not too bad. We want to see zero WBC's platelets etc. then 15 days waiting. Yes, I can have fevers, sores, infections, multiple blood transfusions during this time....in fact, any time from now on.
After that, several other things are possible: more chemo or a transplant.

Chromosome test came back normal. Added a diuretic so peeing like crazy for a bit. And added an antiviral drug.

Just so you know I'm still kick in' outside my room.
See the flower sticker? Most of the nurses did not exactly know what these stickers were or meant. All kinds of ideas. A couple people thought they were 10' a part and were related to distance. So I made it my mission to figure it out. Turns out that they are 10' apart and there are 70 of them around the full circle of the 5th floor. A couple are missing but I figured that. So after calculations: one "lap" equals 13/100 of... a mile. Do 2 laps and its a quarter mile and 7.5 laps and I've done a mile. Yeah!! My goal is a mile or two a day....as long as I am still able. I even met another patient walking this morning who was excited to tell me that the nurses gave him a paper that told him about what the stickers meant and what the distances are. "Oh yeah, that was me,". So guess I helped out. The nurses have it posted at their stations now.

PHASE 1 - DAY 3

DAY 3 Sunday - Finished the 2nd round. I try to be up as normal as possible and am not in my bed all day. Working on emails, fixing a friends computer remotely, any questions from friends, doing some Sun City work, just trying to stay busy. You know, read the paper and mags. Order meals. Stick my arm out, take a deep breath, lemme listen to your stomach, how's your bowels working. All the routine of being a good patient