Recovery begins by getting home today

I have not slept in my own bed for 28 days. That feels weird but the streak ends tonight. Yes, I get to go home with my doctor’s full blessing.

I saw my oncologist for my autologous stem cell transplant twice this week and he’s pleased with my progress. I am on several antibiotics and that won’t change any time soon. I’ll be starting another antibiotic Monday which I will take for several months designed to prevent a particular type of pneumonia that seems to favor stem cell transplant patients. There is another, rather complicated, potential infection scare my doctor is consulting with a specialist that may add to my medication lists for an extended period as well. I’ll learn more about that next week.

I’m beyond the high risk of infection from every day life but have work cut out for me in recovery. The doctors say it will take me a month-plus to get back to normal energy. I’ve had a couple situations this week where I got dizzy and just zapped of all energy. That is my big personal challenge while the doctors figure out and keep me on the proper medications. My job is to get moving and stay moving. I’ve been here before (2015 treatment recovery) but this one already feels much tougher.

But going home is a lift. I’ve got a lot of walking to do and maybe some biking a little later on.

But those words “going home” is the best medicine to about any patient.

I’m going home.

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Can too much good news be a bad thing?

So far I’ve managed to survive a week of intense chemotherapy, eight days in the hospital with a dangerous blood infection, and all the assorted side effects that come with cancer treatment.

My response to treatment has been very good (the Docs say) through about every step. I had the weekend off and saw my admitting Doc this morning (Monday). My white cells held at a good number since Friday, my platelets were way up, and all the other blood checks were positive.

So the good news is I see Doc again Thursday for a similar checkup. If all is good Thursday, I can return home. I realized today this weekend will be four weeks since I’ve spent a night in my own bed.

Challenges remain. I still have issues eating enough, I’ve lost 18 pounds. I must avoid people with any cough or colds and the biggest of all is I must regain my strength. Getting the strength back is the really tough one. A walk through Kroger this morning, after seeing the Doc, left me pretty exhausted.

But I’ve been down this street before with recovery. I did an okay job in 2015 during my first big round of chemo for my Non-Hodgkins Lymphoma. This time I want to crush it. I want to use the time to really capitalize on my physical health. I want to change some of my eating habits permanently.

There is not much you can do to prevent cancers – but getting the weight down, exercising, and eating well improves quality of life.

The last step is more between the ears. My transplant went well – better than many the docs have said. But there has never been a promise it will work – it was simply my best chance. So in a few weeks I’ll start x-rays and screens to see if any traces of cancer show up. With all I’ve gone through the past three weeks I remain quite optimistic.

I’m hopefully coming home this weekend to tackle my rehab. I look forward to returning to  work with my friends at the Purdue University News Service later in June.

I’ll keep posting updates here. But I have to add again and again the amazing effort of my best friend Kathy, several great young guys who became friends while I worked at Wabash college, my best wine buddy, a couple of Crawfordsville locals, and all those who were saying prayers whether I knew it or not.

Today was a very good day.

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Attacking Phase Three: Recovery

I ended eight days in the hospital Friday afternoon with good numbers, measured caution, and a bright outlook going forward.

That’s a pretty big mouthful of happy thoughts but its the way I feel this Saturday morning.

The good news is despite my very serious blood infection, the stem cell transplant has done exactly what it’s supposed to do so far. After the awful week of chemo, my cells were returned and within days my white count dropped to less than 20. Again, keep in mind normal is 4000-11000.

I was weak, couldn’t eat, the dreaded diarrhea set in for the long haul but the numbers stayed on track. On Day 10 after my cells were returned (Thursday), jumped to 2000. Yesterday (Friday) my cells not only passed the 4000 count but my platelets were holding at a good level.

So my doctor discharged me with oral antibiotics to continue my recovery. I’m still in Indy with my greatest-ever friend Kathy. I was ordered to take it easy this weekend. I’ll go into the clinic Monday to check all my blood counts. My charge this weekend is to drink huge amounts of water and eat. I had little appetite for better part of two weeks but its slowly coming back. I should add I’m still at a very dangerous stage at risk for infection. But I understand the rules.

I got a pretty good night’s sleep last night in a real bed instead of the hospital version.

I’ve said to many friends my biggest mistake in 2015, my first round of cancer, is that I worked my way out of it but not nearly hard enough.

If all goes well I could be home within another week or so. Obviously that’s a big goal. I would have roughly a month before I’m scheduled to return to work with my friends at Purdue University.

I’ll save the post about how this sort of procedure alters your outlook on life – because I think it does somewhat – for another day.

In the meantime, it sure feels good to leave the hospital.

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Partying today like it’s 1999

So after posting that morbid selfie yesterday it’s all celebration today!

The stem cell transplant process is all about the numbers during recovery and I  hit a real good one this morning. My whites were in the 600s yesterday, which was good. Today is Day 10 from the re-plant of cells and usually the start of significant white cell production.

Well my boys have grafted and they’ve been busy. And, you should have guessed the number by now – 1999.

That gets me halfway to the usual minimum of 4000. I have another 1000 cell day tomorrow (Friday), there is pretty good chance I get released back to outpatient status Friday or Saturday.

I’ve now been hospitalized a week. I’m feeling okay but after a nice fresh shower this morning I took a good 20-minute spin through the unit and realized I had some hip and leg pain – or core strength loss from lying in a bed so much. Getting out should help that activity some as well.

It definitely feels on the upswing. Doc’s biggest concern is getting me transferred from drip bags to oral antibiotics. That’s sort of the final hurdle for release, along with the counts.

 

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Cancer’s barbaric burden to bear

 

HHCancer

photo taken Wednesday

Trust me, posting this picture isn’t easy. I passed the vanity stage points of life several years back. I’m not fond of selfies. But the whole point is honestly. In the last three weeks I had white cells boosted and then harvested. Next was six straight days of chemotherapy, including three days with two treatments each. It’s some of the most powerful chemo used in treatment, though there are some stronger, and it packs a slow-return  wallop.

 

April 17 I got my cells back in my body and the time of risk of infection really started. I lasted four days as an outpatient before developing a temp above 101 gaining me inpatient status April 20. I’m in the midst of an autologous stem cell transplant hoping to find a long-term remission from Non-Hodgkins Lymphoma.

The photo represents just today. Frankly, I don’t feel all that bad. The pic represents my hair finally starting to go. My giggly and wonderful nurse Amber helped me shave it off this morning. Something new to me is my face and neck are covered with a flacky Psoriasis  (my words, not docs) sort of problem  – bright red and scaly blotches and looks like disease. In reality it’s a reaction to one of the antibiotics I’m taking and also will fade.

So I keep writing about being honest and figured it was time to be honest. I look at that pic and see what I’ll probably look like at 84 – like some of those Facebook filters.

With that mess out of the  way we’re actually in pretty exciting point in the transplant. tomorrow is Day 10 part cell replant and that is when the count usually takes off. My cells – from a low of less than  20 – were up to over 600 today. Keep in mind normal is 4000-10000. We’re on the way,

A couple of good days and I could be released from the hospital to return to out outpatient status. That would be a very good thing  – hopefully, this weekend.

If I have to feel so awful, look awful, to get many more years of healthy life – it wasn’t much of a choice.

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Don’t freak out, I’ve covered that already

It’s 3 a.m. Thursday night and I’m lying in bed having had a fever running in the 101-plus range. I was admitted about 7:30 p.m. Thursday evening, following protocol that anything over 101 is dangerous.

But this is different. I’m uncontrollably shaking..  I’m talking the kind of shaking that you grab your arm with the other and you can’t hold it still. I’m ice cold ….. a few seconds into consciousness I buzz for my nurse and she is here in seconds. My temperature is 103. They start a drip with a stronger anti-biotic and bring a warmed blanket to put over me beneath the regular bed sheets. Maybe, maybe it freaked me out a bit. It was my first night in the hospital, I wake in a freezing shiver I can’t control, and they tell me my temp is 103. I get Tylenol too and manage to shiver my way off to sleep.

I awake not too long after that incident and me, my sleepwear, and sheets are damp. I realize the antibiotic drip has helped break the fever. It’s four in the morning (Friday) at that point but I figure that’s perhaps hopefully the worst of it.

My vitals are strong today (Saturday). My blood count is still bottoming out with this morning’s tests. My platelets were down below safe levels. So I got first-ever blood transfusion of platelets today.

My doc is a comprehensive guy. We went over the infections and problems through Friday. Doc said I had a type of E-Coli infection – one found in almost all of us in our digestive track. Normally, your natural immunity keeps it in check. But, I have no immunity. We discussed some side- effect management. He then said that as far as stem cell transplant patient status goes I was doing great, “Better than to be expected.”

So it’s Saturday and I’m still on the downside …. but new cells could start popping up as quick as tomorrow or the next day. That means recovery is underway after hitting rock bottom from the rat poison that is chemo.

I will remain hospitalized for a few more days – probably at least middle of next week or latter part of the week. Then I’ll be able to return to outpatient status. I still hope to get back to Cville by mid May.

I guess I should end with something philosophical but nah. I’m not trying to inspire. I just want people to learn what cancer treatment is really like and what it can do to them or their loved ones.

There are only two clinics in Indiana doing this treatment for re-occurring  Non-Hodgkins Lymphoma. I’m at Saint Francis on  Indy’s southside. The other is IU Health downtown. This clinic does 80-100 transplants a year.

What I can say – is I can’t wait to start the fight back – that’s got to beat the crap out of the slide down.

 

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Yuck – the downward slide begins

It’s a Tuesday afternoon, day after my stem cells were returned to my system, nauseated, diarrhea, no appetite, no energy and a long way to go.

That’s a downer but also reality. And again, this is day one of the crash.

A very brief review of this procedure which hopefully will arrest my Non-Hodgkins Lymphoma: two weeks ago I had stem cells harvested from my blood supply. I had chemo therapy six days last week and then Monday the cells were returned. It’s simple, they strip you down to nothing – to clear any traces of cancer – then allow your good clean  cells to build you back up.

 

my blood

Yup, frozen package of my stem cells.

Monday, before stem cells were returned, my white count was 4600 – and that’s within normal ranges. But once this process kicks in, it all goes to heck. This morning my count was 600. That means I’m virtually defenseless against infection. That requires wearing a fairly heavy breathing mask anywhere outside the home I’m staying in and watching for every piece of dirt or germ. I don’t move around much. Suffice to say, I wash my hands a lot. We’re doing laundry daily. No one can enter the house without a mask.

 

The doctors and nurses tell me it will take about a week to rebound. I go in every morning for blood count and testing. I get a daily shot of Neupogen, sort of a fertizlier for my cells. The staff checks all bodily functions to keep me going. I’m taking 4-5 antibiotics to fill in for my depleted natural immunity.

This is the barbaric nature of cancer treatment for many today. The things described in the first paragragh above are probably only going to get worse. Pause for a second – political comment coming – how anyone in my seat and in much worse and dire conditions, feels when they read about a presidential budget cutting  cancer research.

There, got that out of the way.

 

 

 

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