WEDNESDAY

Wednesday - We know where we're going now. 

Yesterday we had our now weekly --- it used to be 3 times a week --- labs done and visit with Dr. Singh. As you can see in the chart here, things are going very well. My own bone marrow is doing it's job and producing White Blood Cells, Hemoglobin and Platelets. The only one that is still a wee bit low is HGB but it's coming along so no worries. 

I hope you read my last post because that answers some of your questions. However, I asked Dr. Singh again about the possibility of having another round of chemo. He said, he was not recommending it because the increase in the likelihood of leukemia not returning was only a couple of points better and not worth it for the small benefit.

How am I feeling? As I mentioned before, I tire fairly quickly but am pretty much going through the day normally. That just means I need to sit down more. I am aware that I need to walk some every day whether it's at home or at Walmart or to a meeting. We are planning out our fall schedule which will include some trips and I'm really hoping to get back to into tennis in another few weeks. But, I'm just listening to my body. Tennis will be a gradual thing after not playing and working those muscles for almost 8 months. It will be fun to see how much muscle memory is still working.  

My next appointment is not until next Friday so I may or may not post something between now and then. 

Thanks for always thinking about us and praying and emailing and calling,

Bob

THURSDAY TO MONDAY

Thursday to Monday 

• "You look great." 
• "How's it going?"
• "Are you going to have more chemo?"
• "How are you feeling?"

These are all questions I've had from my friends and family over the last week. So let me answer you guys. 

• You look great - Thank you for the compliment! It's all relative, huh. I still need to gain 10 lbs. or more back. I've had two haircuts in the last few months but it's still quite shorter....shorter than you know me as having. Although, Dawn likes it short, so I might not let it get much longer. 
• How's it going? - Oh, what do you say? It's actually going very well. Although life is definitely different and I do have a different perspective. 
• Are you going to have more chemo? - That's a biggie. I am torn on this. Dr. Singh told Dawn and I last Wednesday that 4 rounds is it. I won't have any more. The question is, was that enough? Normally the protocol calls for 4 to 5. Only God knows that answer. But, Dawn and I are fine with that and understand better than ever before that life is both tenuous and precious. So, we'll live that way. 
• How are you feeling? - All relative again, right? But, in general I'd say I'm at about 75% of the energy level I used to have. Now that does not mean I am dragging around all day. I am not. I am working at my computer a lot of every day. I even picked up another new consulting client the other day. But it does mean that I tire more quickly and take short rests during the day. Plus, it means that my body is telling me that I'm not quite ready to try playing tennis again yet. I know that when I do, I will have to ease into it. But, boy, am I anxious to get out there with my racket. 

What have I been doing? Well, in the last week we got both cars detailed for the winter, ran lots of errands, been at mom and Gerry's to help out lots of times as usual, worked on recipes, I went to the tap show rehearsal to test out some camera settings in prep for taking dress rehearsal photos on Friday, I finished a video for the annual tennis club banquet tonight, got my eyes checked and Dawn ordered new glasses for me, worked fixing computers at the computer lab for a couple hours last Friday and got my ears cleaned and checked and my hearing aide adjusted yesterday....and went to the annual EAA pancake breakfast on Sunday at the Hinckley airport owned by our good friend, Ashley.

Here I am in my "Rodgers That" Packers t-shirt in front of a Piper Cherokee similar to one I used to own. 

Now I'm only going for lab work and to see Dr. Singh once a week...which is good. And, I'm driving myself...double good. So tomorrow we'll see what my numbers look like. I know that because of the amount of chemo I've had, recovery will be slower than before. But I am honestly doing well, folks. 

Love you all,

Bob 

TUESDAY - WEDNESDAY

TUESDAY-WEDNESDAY - I have 3 things to report to you this morning.                     

First, I had my usual lab-Dr. Singh appointment late yesterday. As you can see, my labs are decent: WBC is normal. HGB could be better and PLT are low but OK considering my situation. I did get a bag of blood and platelets a week ago but now my own body kicking in and the numbers will go up. I am feeling pretty good but not quite tennis-ready yet. I am driving myself so that's a big hip-hip-hooray.                                                               

Second, Dr. Singh related an interesting, almost funny story yesterday to Dawn and I. He said, "I was talking with Dr. Mandal [partner who I most often sees when in the hospital] and he said that Mr. Marcom is just a very interesting case. He said he'd never seen a patient with such low numbers look so good and be so optimistic." That made my day....my month. And, you see how crummy those numbers were on the table below. 

Third, Dr. Singh said, "We are not going to do any more chemo. That's it." I think we will end up talking more about that. But, in many ways, this is great news. It means that I can get on with life, make real plans, look forward to getting back to tennis and some travel again, go to meetings and be with friends without worrying about whether I am neutropenic and feeling OK.   

So, will I roar back? I'd like to but remember, Dawn forces me to be realistic so I might meow back and then roar next month. 

All this is because of that three legged stool I wrote about: the best healthcare and doctors, Dawn and my attitudes and our spiritual values and believe in God's power in our lives. 
Love you all,
Bob 

Please read this if you haven't already. ​

SATURDAY - SUNDAY

SATURDAY - SUNDAY - These are recovery days, of course. So I expect nothing much to report. However, I have done some writing on the "Why I am writing the blog" tab on my website that I really, really want you to have a look at. You can comment there too and let me know what you think. 

While you are there, have a look at a video I posted on the "Resources" tab. It's terrific and very short.  

Otherwise, the Packers beat the Bears so life is good. 

Love you all, Bob and Dawn         

FRIDAY - IT FINALLY HAPPENED! We went to Dr. Singh's today as usual for labs and a chat. Vicki came in first with a huge smile and, "Boy, do I have great news for you!" Then Dr. Singh came in with another big smile. 


My WBC's were 4.7 [anything above 4.0] is normal. My HGB [Hemoglobin, right?], was 9.1 [above 12.0 is normal but we are close] and PLT's [Platelets] were 103.....about 140 is normal but that's close enough. That's after seeing WBC's at 0.2 or 0.3 for weeks and Platelets as low as 7 to 17. Several things are happening. The neuprogen shots [got another today] are helping, the whole blood and Platelets on Wednesday helped and own body is waking up. 

Right now I have no restrictions. But I will still take it easy, that's for sure. I need things to keep moving along. 

To say that Dawn and I are overjoyed does not begin to describe how we feel. What's next? More chemo? No clue. Flip a coin. Dr. Singh will not likely talk about that for a while. And, not worried about anything else except just moving along right now. And, possibly getting back to tennis and traveling. 

Looking forward to a haircut tomorrow, watching my granddaughter, Lily in the Miss Teen Wisconsin pageant on TV, and the Packer-Bears game on Sunday. Yes, this is Dr. Singh and me this morning. Two smiley guys. God is good to us. Thank you all.
Bob 

* I am going to write more about this especially on my website which is here: http://bobsleukemiajourney.blogspot.com/. 

Here's something to think about [not just about me at all]: The new normal is still a bit scary. I do not have any evidence of leukemia and haven't for many months, but any cancer can come back in 6 months or never.

THURSDAY'S CHANGE OF VIEW

THURSDAY - Yeees! I was discharged today at about noon. So my view has now changed dramatically!

I was expecting it but, of course, it depended on my numbers. Everything was up and I am technically not neutropenic....but still am going to be very careful. I need to still recover.

Dawn picked me up, got me lunch and got me set up for some rest this afternoon...although I did sneak in some work at my workstation. She went back to work.

This afternoon it gave me a chance to reflect on what Dawn has been through since last Wednesday. Every day: 

• Up by 5:30am
• Figure out what she is going to take to me for lunch and dinner
• Go to check on her mom at either 7am or 5:30pm.
• 8am to about 8:45am, go the Sherman to see me.
• Go to work at the ophthalmology office which is her real job. 
• 1pm  - Bring me lunch from Panera or from what she made at home. 
• 5pm - Go to moms or to the hospital. Heats up my dinner and sits with me until about 8pm.
• At home morning and night:
• Figure out menu's and cook for me and for mom and Gerry
• Does wash - I change at least my jockeys often and other stuff about every other day. I pee at least every hour 24/7 because of the fluids bag and sometimes have to rush to the bathroom to pee into my lemonade bottle...and kind of miss sometimes. Ha ha. I don't wear any hospital stuff in the hospital as you know. 
• Water the many plants on the porch daily
• Check mail
• Go to tap class
• Get to bed by 10pm

Did I miss anything? To say that she's my angel and sweetheart and partner through it all is such an understatement. I know that having me home lightens her load and her mind a lot...she's really worn out and the weekend will be a wonderful rest up time. 

Off to get a neuprogen shot and labs and see Dr. Singh in the morning. I am guessing we'll be back in the routine of checking CBC's 3 times a week again for a while.
Thank you all,
Bob

WEDNESDAY BROUGHT GOOD NEWS

WEDNESDAY NEWS - The big news is that Dr. Singh is back and this morning he said that if everything looks good in the morning, he'll send me home. Today I got an irradiated blood transfusion and a platelet transfusion. WBC went up to 1.1. HGB down to 6.8. PLT 12 from 21 the day before. But we'll look at what the numbers look like in the morning ---- they should all be noticeably up. 

Dr. Singh says that I'm better off neutropenic at home [home germs that my body already knows] than at the hospital with mystery germs. Although everyone is very careful. I wear a mask on laps and anyone coming into my room wears a mask, of course. 

So with that, I know that your prayers have gotten me to this point successfully. And, I love you all, Bob 
Oh...this is me and my pole outfitted for laps this afternoon.

TUESDAY REPORT

TUESDAY REPORT - Ditto. I wish it was really different. However, my WBC did go from .3 to .6 so that is most definitely a PTL. But .6 is heading in the right direction after being stalled out for days...even though it's still rather puny. My HGB is about the same. But my platelets dropped to 21. If  they drop more, I'll get another platelet transfusion which is fine with me. Those bags drip pretty fast; although since I am connected to at least fluid 24/7, I guess it makes little difference. The doc  dropped the  IV today. I just don't need that antibiotic anymore but still on two others. So, ladies and gentleman, boys and girls, we will see what my 6:30am draw tomorrow brings. I am still hoping to get out Friday or Saturday. But I sure have no impact on that decision. 

Sweet dreams to all. 
Love, Bob

SUNDAY - THE STORY OF THE PATIENT PATIENT

SUNDAY NIGHT - THE STORY OF THE PATIENT PATIENT. I have to admit it is a wee bit emotionally taxing. But have a look at the chart below and you'll see that in spite of my doctors saying, just be patient, your numbers will come back up soon....in a couple days. You will see that they have not really changed much even with twice daily antibiotics by mouth and IV [which don't really directly affect my CBC's but do prevent infections...which I don't have now], and a daily Neuprogen shot in my tummy to boost white bloods cells and the bag of Platelets a few days ago. I am trying to be patient. Dr. Desai said today, They WILL come back in a couple days for sure; your bone marrow will kick in. I told him I felt like just laying in bed, watching TV and waiting. But he said, Don'. Keep walking laps and working at your computer. So, OK, I'm on it. 

Oh, I forgot to tell you yesterday about my IV. So I noticed that the line in my left arm was a bit red and swollen all of a sudden. Yep, the needle was leaking under my skin. I kind of thought the nurse ---- not from this floor--- who put it in was less than expert; but, hey, whadda I know. So, it needed to be pulled and a new one put in. My nurse made three stabs [pokes or "you're going to feel a prick," in my right arm but could not hit a decent vein. Maybe no surprise because I am getting a bit beat up now in the arms. So she calls Crystal who just happened to be working on my floor yesterday ---who I know pretty well----and she got a line going in my left arm. Hooray, 4 tries was enough. But Crystal works down in the infusion center in the Cancer Center so I expected that she was much more experienced with hard [axx] cases like me. 

Today I've got almost 2 miles in lap[s in, watched a nifty WWII flying movie on Amazon Prime, did a bit of work, and chatted with Dawn here for a couple hours. She will get to sleep at home tonight since her mom's caregiver is coming back from Chicago at 6 tonight after a short vacation.

I appreciate your comments and prayers so much. The first thing Dawn always asks is, "What did you write today and lemme look at the comments." 
Hugs, Bob

SATURDAY

SATURDAY BUMMER 
I am really feeling pretty decent...and got about a mile and a half in laps today. Does not sound like much but is good for Sherman hallways, I guess. 
The good news is my temps are totally fine and most often in the low 96's. Am I still breathing? Yep! The discouraging news is that my numbers are still the pits with WBC at .3, PLT's at 35 and HGB at 8.6 (not a deal breaker). What we're watching now is ANC (Absolute Neutrofil Count) for those of you who care or understand. The ANC now becomes the composite get out of jail number. It's .3 and must be 1.0 to go home....absolutely. My oncologist was in and said not to worry, the numbers will be OK in a couple days. Yeah, I know. But does that make me less antsy-pantsy? Heck no. So you are just thankful to God for how good I am now and for patience. Lunch from Panera, Dawnie brought in dinner and the Badgers are playing Alabama in a few minutes. Then I'll take my Counting Sheep pill, wake up 5 times in the night to pee in the lemonade bottle and see what Sunday looks like. Hope you all have a super duper holiday weekend. Hugs, Bob

FRIDAY

FRIDAY - It was so uneventful that for the first time ever, none of my oncologists came to see me. Well, there's more to the story but it's fine. They would not have needed to do anything or change anything. 

I am still cruising along on the antibiotics; and my mouth, while still quite ugly, is getting much better. But my legs are all kind of broken out with the red spots like measles which is related to the mouth sores and little bruises ---- no worries. They will go away.

I may venture to some soft food tonight for dinner from our friend, Susan. Dawn brought a 450 cal soup and a 270 cal green smoothie for lunch. Yum....need those cals. 

Nancy, the hospital nutritionist always stops to see me to talk about hospital food and pick my brain about improvements; but she knows that for the most part, I only eat breakfast here. She's tryin'.

All day my temps have been in the 97's. Hooray for that. My platelets dropped from 75 to 53....but as some of you guys know, they don't last long and get used up. So hoping my bone marrow kicks in soon and starts making some of those bad boys. 


White blood cells are really what I need now if I ever want to get out of here. They are still .2    ...which is bad. So, I'm looking forward to what it looks like in the morning. It would be nice to not spend another holiday here. 

Otherwise, that's the report for tonight. My mother in law's caregiver is on vacation for 3 days so Dawn will spend most of the weekend with mom. It's good that we are close by and can help. 

Be safe, happy and have a festive holiday,
Bob

THURSDAY - Game Changer

THURSDAY was a game changer! 
I woke up this morning only to fine that the blister sore in my mouth had tripled in size with my tongue about 70% covered in painfulness. Could not eat or talk very well at all.

So Dawn called Dr Singh at 7am and he made the arrangements for a platelet transfusion a couple hours later at Sherman. That went fine and I was done by about 11am. Then just afternoon at home things took a digger--- my temp has been normal ever since I got out of the hospital almost two weeks ago. Then, bam, it is 100.5 to 101.2. This is not good so Dawn called Dr. Singh and I was admitted back to Sherman an hour later.

Oh boy, not in my plan but we deal with it optimistically. Tonight I got a shot of nuprogen to boost my WBC count which is now only .2! But my platelets went from 18 to 75 tonight so the platelet transfusion is helping. HGB only dropped form 10 to 9 which is OK. The rest of the night I'll get a couple of antibiotic IV's.

They will culture my blood to see any signs of inspection. That is a big prayer need.
Guess that it for now,
Virtual hugs to all (I am neutropenic so not hugging or touching anything)
Bob

PS...

Bob Marcom Not to gross you out, but this was two days ago. Today it much worse but I think it may be starting to improve. At least I have normal temp this AM but likely here for another holiday!!

WEDNESDAY LABS

WEDNESDAY LABS 
I did not know exactly what to expect today but was hoping my numbers would go up....at least a wee bit. 

Well, well, well, my journey has not always been predictable. As much as I record data and make charts and try to cipher what will happen next, I am batting maybe 60%. When I woke up this morning my mouth was full of these nasty blood blister type sores, small bruises were developing on my face and I bleed at the least provocation. 

No surprise when your platelets are in the teens. As I said yesterday, platelets thicken your blood. Yesterday they were 17 and today 18. This is what happens....especially the sores in your mouth first. So, it's hard to eat, sore and very uncomfortable but they should start going away in a week or so. My platelets were about 275 [normal]  a couple weeks ago after I had just finished round 3 of chemo, by the way. 

Second, my white blood cells which were .5 on Monday were .7 today. I am very, very neutropenic and wear a mask now if I am out anyplace....which I am not, except for doctor appointments for this week. They should be 10 times that. 

So what's the bottom line? Dr. Singh says that my numbers are coming back and I'll be feeling much better by the middle of next week. Yippee. 

However, yesterday I told Dawn that I'd bet that Dr. Singh was going to send me for a platelet transfusion today. Just a guess from my months of experience. And, yep, I'm heading to Sherman for a bag of platelets tomorrow. I'd guess I might have gotten them today but my doctor wanted some special irradiated platelets and the outpatient infusion center had to order them. My "travel department" friends are taking me at 11am and it only takes two hours. So that's good. I'll work on my online photography class while I am there.   


I thought I might have Round 4 of chemo the 2nd week in September. Dr. Singh said, No. Maybe a bit later. 

So here's a photo of my arms. Just drawing blood for labs bruises me up big time and bleeds a lot. At least they don't hurt like my mouth. Hugs for tonight, Bob.