Chemo is one thing, fatigue another

The hard-to-explain problem with cancer treatment recovery is the fatigue which follows in almost every single case. Chemotherapy can be partially explained because of the immediate symptoms and the toxicity that permeates your body.

But the fatigue that follows for weeks and months, depending on the intensity of treatment, can be very hard to explain.

I am 27 days past the reintroduction of my white blood cells and 28 days past my last day of chemo. I returned home just over a week ago and last saw the doctor on Thursday.

My doctor’s visit couldn’t have gone much better, frankly. My white cells are up in the mid-7000 range, platelets were over 100,000 and all the chemistry showed my organs were handling the whole assault just fine. I am taking two antibiotics at the moment and will be taking those for some time.

The challenge now is the nasty fatigue of chemo. In 2015 when I had six treatments spread out by 2-3 weeks at time, I had something of a constant fatigue. It just never went away. And the biggest lesson I learned from that experience  is I didn’t try fighting my way out of that as hard as I should have done.

My chemo for the stem cell transplant was nine treatments in six days. My oncologist called it “much more intense” than what I had in 2015. The week of chemo wasn’t too bad until the end – then it was pretty awful.

But the fatigue from the completion of the process is quite different than the constant drag of two years ago. If I get up from writing this post and do something active – a walk or housework – I’ll be quite tired and probably need a nap. If I sit here and visit with a friend or just move around a bit then I feel just fine.

I drove to Indianapolis and back to see Doc Thursday. I also did lunch. I was blown up with fatigue rest of the day. Yesterday I walked to the local farmer’s market, did a few errands in the car, and walked my doggie in the afternoon. I grilled a nice piece of beef fillet last night and it was delicious. I felt pretty good all day – probably my best day to date.

The doctors have told me I can count on 4-6 weeks before I feel ‘normal.’ That would mean I should start feeling better in early to mid June. Yesterday was great encouragement.

I am challenging myself to do much better. I hope to get on a bike in a couple weeks. Right now I wouldn’t trust my balance (as silly as that may sound). I have found that if I pick up heavy items or bend over to clean a spill in the kitchen, I’m a bit dizzy. (Hold the jokes!)

I lost 18 pounds in a two-week period at the height of my treatment. As of Thursday I was down 22 pounds. It’s not a weight loss program I recommend to anyone! But the last two years of treatment, I had gained a lot of weight. I hope my efforts in attacking recovery and lessening fatigue will have a bonus effect on my health by additional weight loss.

But an equally, or bigger challenge, is to eat better and avoid sugars. Sugar is fuel for cancer. I am trying hard, and successful so far, to eat less meat and more vegetables. And I know, I mentioned steak above. I don’t intend on going vegetarian but I intend on eating smarter. Less crap, more healthy choices is the goal.

So I plod on. I will continue to update this because of the handful of cancer patients that I know read it. I certainly appreciate the friends and family who have read it as well to keep up on how I’m doing.

 

bald

Taken fresh this morning. 5/14

A big thanks today for all those folks I know and don’t know, who had me on prayer lists and included me in their prayers in recent weeks. Those friends should never underestimate the impact that has in a positive attitude while facing these challenges.

 

And a random …. my damn hair just keeps disappearing.

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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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