Unrelated condition could force change

As a hardheaded and independent type, I don’t like outside forces making decisions for me. But that’s a situation I face over the next couple of weeks.

This blog has been all about my cancer treatment. And, that continues to evolve in a positive direction. I will see my lead oncologist this week for the first time since late May so checking in will be a good thing. Plus, as I have written here before, I have one antibiotic that I think is really effecting my energy level in a negative way. I plan to have a conversation about that as well.

I always thought the cancer or cancer treatment could impact my decision on when to retire. That could still happen, I suppose, but another culprit seems to have moved to the front of the line. I have struggled with sharp vision for 3-4 years. It’s a long story. The shortened version is I’ve had two local optometrists make five sets of lenses over the past three years and none give me sharp vision. They would zero in on the correction in the office, get it just right, then they make the lenses and I can’t clearly see.

can-glasses-correct-visionSo I visited the IU School of Optometry in indy a couple of weeks ago and the head of the residency program detected an unusual cataract that can cause this condition. I’m doing a follow up with him this week.

The problem is my close vision – sitting in front of a computer screen all day – is terrible and uncomfortable. It is not a new problem but has worsened over the past six months to year. I got a pair of ‘reading glasses’ last week made after my IU visit and they’re no better – if not worse – than my local optometrist prescribed.

I’ve been back to work for two weeks and struggled – it’s not sustainable. I really had not planned on retiring until sometime in 2018 or maybe even mid 2019. But the vision problem has to be resolved.

I’m going to learn this week about the removal of a premature cataract. I don’t know the issues with that yet. And, the doctor said the condition could be causing my problem but he didn’t think the cataract was big enough to cause the problem to the extent I describe. So even if the cataract can be removed, there is no guarantee it solves the problem.

Now the few folks I’ve tried to explain this condition to immediately ask if my cancer treatment has had an impact. Strong chemo can blur your vision and that happened with me in 2015 and again this year. But that didn’t last very long either time. I had this condition before I was first diagnosed with cancer in April 2015.

I can use my laptop for short periods of time as I am in writing this blog post. But as a writer most of my day at Purdue is spent in front of a large computer screen. I have blown up the browser size so the type is really big but it’s still not sharp. At work, I can really only see the screen by taking my glasses off and moving in way too close. Not only is that uncomfortable but it tires me – when I’m already fighting fatigue from the stem cell transplant process

I not happy with the thought that a health issue – my vision – would force me into early retirement. There are things I can do if I want to continue to work but not the things I’ve done all my career.

So this blog has been mostly upbeat because of the continued success of my autologous stem cell transplant. This post is a bit of a downer. I can’t say I’m down or depressed at this turn of events but I am angry an outside factor may force my hand instead of making the decision on my timetable. I can retire if necessary and go sell wine in a retail setting – or about any job that doesn’t require all day in front of a computer. I have planned for retirement; I can do this if necessary. I would still like to work, doing something even part time, a few more years.

I’m anxious to learn this week if I have some options in correcting my vision and making the retirement decision when I feel the time is right. Whether I continue my work at the PU News Service or go sell wine, I’m also anxious to see if my oncologist can help me with an energy boost.

Quite a week ahead.

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Hoping to return to normal routine

 

relay pic_edited

PU co-workers thought of me at Relay for Life

 

Three months have passed since I last worked. The last three weeks my recovery has continued but remains something of a roller coaster.

Regardless of the ups and downs, for now at least, I’m returning to work Monday, June 26. This was the plan since I took off at the start of April. I miss the routine and I’m tired of being tired.

So an update: I really upped my activity by getting out and about over the past week. I made a trip to Cincinnati and back Wednesday. I was out all but one day over the past week. I still have a real crash of energy every few days.

Additionally, my eyesight remains an issue. I’ve struggled for 4-5 years while the problem worsens. I’ve been through two optometrists and about 5 sets of lenses. I’m going to see how I do with a day in front of a computer and then try the IU School of Optometry next.

I continue to take three different antibiotics and that won’t change for awhile. One of the three, causes physical weakness so I have opposing forces making this harder than it could be.

Finally, for this post, I have to offer thanks again. I’ve continued to learn of people thinking of me and praying for my recovery that I know and don’t know. My co-workers at Purdue University sponsored three luminaries (see pic above) during the annual Relay for Life. I was really touched. I didn’t know this until last week because I wasn’t readying work email regularly. I’ve sent a thank you to my co-workers.

I have learned such acts of kindness — known and even unknown – really hit home in a way that’s hard to explain.

So it’s back to work and I’ll update here in a week or two how I’m handling a full day of work.

I did forget one piece of good news since my last update. I had a PET Scan about three weeks ago and learned two weeks ago it was clean – no cancer. Now, 60 days after the transplant it should be clean – fortunately it was.

I’ve been asked when I will know if the transplant worked? Well, the answer seems a bit snarky but when it comes back it comes back. If I live another 15-20 years cancer free, we know it worked.

Thanks for reading.

 

 

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No toasts to my recovery for four months

I’m slipping a bit on weekly updates but that should mean the news is good – and for the most part, that would be an accurate assessment.

The past week remained a roller coaster of recovery but with good signs the past few days. I decided to challenge myself over the weekend and made back-to-back trips to Indy on Friday and Saturday. Friday’s trip was a lunch meeting and I handled it well. I traveled back to Indy Saturday to visit the Vintage Indiana Wine Fest, on a much warmer day, and it took something out of me. Sunday, I felt great. Monday, I was totally shut down.

That is good of an illustration as I can offer to explain why I call it a roller coaster. But the summary is I’m making progress. I am scheduled to return to work in less than three weeks – June 26. The conundrum I’m facing is creating all sorts of activity to restore my stamina and energy to return to a job where I sit in front of a computer all day.

 

deano

No booze for four months! Sad news, indeed!!!!!

On other fronts, I have lost 24 pounds through the procedure and would like to lose more with better eating habits and more exercise. The doctor approved. I’m taking three antibiotics that have little to no effect on me but one is centered on my liver. Aaa-oh! That means I can’t resume my wine drinking. A sip here and there is okay but it looks like I’ll be on the wagon through the end of September – at least.

 

For every setback (in my mind) there is a silver lining. Not drinking wine has to help my efforts to lose weight.

I’m waiting for my optometrist to get my new lenses back from lab. That’s another work worry. My vision has been bad for 4-5 years and I’m on my second doctor trying to correct it. Sitting in front of that computer all day is tough – with blurred vision it’s a nightmare. If this doesn’t work – it might be time to seek out a specialist.

The big news of the week is I’m having a PET scan Thursday – which I didn’t know until this morning. I have those done on Indy’s north side. The PET scan should show me absolutely free of cancer – considering they took my white cell count down to 10 during the autologous stem cell transplant procedure. Frankly if a spot shows up, it would be a terrible set back – at least psychologically.

But I have confidence in the team of doctors which took care of me and the procedure I’ve learned so much about.

A few folks have asked about post-treatment. After a transplant doctors would order some sort of maintenance program in year’s past. That often included an immunity drug or a light chemo regimen. The latest research-based approach, according to my lead doctor, is a “wait and watch” process. That means I’ll see my doctors more often and be tested more often. The results of wait and watch are apparently just as effective as subjecting the patient to “preventative treatment.”

By increased monitoring the theory is they find a smaller reoccurrence it can be dealt with in less intrusive fashion. It made sense to me.

 

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Was that a corner I just turned?

Cancer treatment recovery is a tricky and stubborn cuss. There certainly are days I feel much better usually followed by a day or two of ‘will this ever end?’

But since my last update, just over a week ago, I feel like I’ve turned some sort of corner. Some of the toxicity has largely disappeared. I had a couple of ‘crash and burn’ afternoon naps but only a couple in the last eight days.

I was able to walk all but two days last week. Really crappy May weather kept me inside two days which was a setback. But on the other days I walked 2-2.5 miles each morning. I’m about to do that this Memorial Day. Also, today I’m adding an afternoon walk – of a distance to be determined. I hope to make the second walk a daily routine.

It also dawned on me last week that I’ve reached the point I need to get out more and do normal stuff. Getting in the car for a half hour or hour drive is more tiring than walking for exercise but much more like life’s normal routine.

I’m scheduled to return to work a month from today. Thinking aggressively, it would be great to go back in three weeks but the whole energy level thing will determine that.

A side effect I know I mentioned in the past has been a real discomfort lately. Before my 2015 diagnosis of Non-Hodgkins Lymphoma, I was having issues with my vision. My optometrist retired and I stubbornly delayed going to a new one. I tried in late 2014 and in 2015 to get my vision corrected. We just could never get it right. My vision certainly blurred during 2015 chemo – which I knew could happen.

I tried another optometrist last year and the doctor got closer but the same problems. My vision is particularly bad up close which isn’t good for someone who makes his living at a keyboard. We went through two different prescriptions and neither worked.

My vision has been noticeably worse the last few months. I saw the optometrist last week and will get new lenses in a week or so. I can’t say I’m optimistic but I’d love to be pleasantly surprised. I’ve never had this problem in my life until the last few years. The two doctors mentioned get my vision nice and sharp in the office, they make the lenses and they arrive, and I still can’t see clearly.

Just another example of chemo’s evil ways.

So this week it’s more walking, getting out more, and concentrating more on diet.

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Trudging the slow road of recovery

During cancer treatment life is pretty simple – you feel toxic most of the time. But recovery is a sly fox – you feel good a few hours and then crash and burn as a reminder that cancer and cancer treatment isn’t done with you just yet.

I am at Plus-33. That means it’s been 33 days since my stem cells were returned to my body in my autologous stem cell transplant. The transplant was deemed by my doctors to be my best bet for full remission from Non-Hodgkins Lymphoma or a longer  period of being cancer free. I was initially diagnosed in 2015 and underwent traditional treatment but the cancer returned about a year later. (There’s the nut graph for you journalism people.)

I returned to my home three weeks ago and now fight for recovery. As I’ve written here before, I don’t feel like I worked hard enough in 2015 and I’m pushing myself more now. That means a daily walk – usually of about two miles. I do get tired but I’m going at a pretty slow pace. Right now at this stage, even a couple hours out doing errands is like exercise – it wears me out.

A good example of this up and down process is yesterday – May 20. I had a pretty crappy day Friday, it rained most of the day, and I stayed inside, slept a lot, and felt the toxicity. Activity defeats the toxicity but not always the fatigue.

So Saturday I felt pretty good and drove to Indy for lunch with a friend. I drove to the southside then out to the east side to the fabulous Caplinger’s Fresh Catch fish market and then returned home. I became tired about two-thirds the way back and by the time I hit the lazyboy chair was exhausted. And all I did was drive down and back, have a sandwich, and return home.

I spent the rest of the afternoon in the typical sleep or sleepy zone. I became clear headed about 5:30 and was okay for most of the evening. I went to bed earlier than normal and got close to 8.5 hours of sleep. I was pleased with that – but we’ll see if it has any real positive affect on today.

If these paragraphs made any sense, good. It’s hard to describe this up and down. What I’m pushing toward, with a ways to go, is being able to feel okay for up to 8 hours so I can return to work.

Another frustration and nasty side effect of chemo is it often has an impact on vision. I was having  issues before my 2015 diagnosis and my sight worsened after treatment. Several attempts last year failed in crafting lenses to return my normal vision.

On top of that, the chemo and procedure I just had tends to create a breeding ground for cataracts. So this week I want to get an appointment scheduled, with my oncologist’s approval, to try to restore my clear vision. Even setting and writing this blog post I have to juggle the position of the laptop and struggle to see sharply.

That’s plenty of negativity. The positive is there are 2-3 blocks of 2-3-4 hours a day that I feel pretty good.

Today’s test is a much shorter trip of about 30 minutes each way to visit my elderly mother. Once back home I have a piece of freshly-caught striped sea bass I’m going to fix for dinner.

I’m trying hard to make permanent changes to my diet – less red meat, more fish, more greens, and a sharp reduction in sugar. All of those changes are good for cancer patients – frankly, good for anyone.

I haven’t been on the scales in awhile but I continue to loose a bit of weight. The last time at the doctor’s office I was down 22. Honestly, I’m very happy about that – but it’s not a weight-loss program I’d recommend to any one.

 

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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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