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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Troops are amassing at the border

I have completed five of six straight days of chemotherapy treatment as of this morning (Sat.) with one to go today. I’ve been pretty accurate in describing what was to happen through this tear-down and build up process,  but getting a better idea in last couple days.

The toughest drugs came Monday (and it was) and today. In between I had chemo twice a day. I got through that with a few ups and downs but mainly a lot of fatigue and nausea yesterday. It seems like I spent every waking moment not in those two appointments – about 2 mi. away – sleeping in a lazy boy chair.

 

akard

There is a no photos sign in lobby – but I snapped this mug of Akard off a marketing poster!

My hemotologist/transplant physician spent a good amount of time with me yesterday explaining the next few days. It was very helpful. I get what I’m calling a trigger drug today. Enough to know, is that I get about two hours of liquid – including Benedryl to prevent reaction before additional fluid to push this Melphalan through me. I receive the drug while sipping on ice chips or popsicles.

 

Dr Akard explain that this sort of brings everything together. Sunday should be relatively calm and I may get a day without a visit to the clinic. I’d go back Monday morning to have my 5.6 million frozen stem cells returned to my body. Akard explains its not unusual for my while cells to rally and actually go up for a day or two. But  then the crash happens! Or, if you’ve been reading – I get hit three times by that Mack truck. During this time I’ll also again be getting Neupogen to boost white cell production – same as I did prior to white cell harvest.

My white cells will drop below 1,000 leaving me extremely vulnerable to infection, cuts, all sorts of things that are usually non-life threatening. I have to take care and jump at the eariest sign of a fever or anything irregular.

That all means trying to eat and drink while the most sick of the entire experience. diarreha, vomiting, and mouth sources can be quite common. Fun, Huh? I will be wearing masks and taking every precaution.

It takes about 7-8 days for white cell production to really begin. During these tough 7-8 days I’ll still visit clinic daily. They’ll be checking liver, kidneys, blood counts and everything to maintain my proper health. I could be getting transfusions, or infusions of things like potassium, and more. If I am to be hospitalized, it would most likely be during the next week.

Once cells start to grow the process can accelerate. I get through the dangerous state the clinic will only see me 2-3 days a week. When my platelettes reach 50k, I’ll be permitted to drive again.  That means I could return to my home and make just weekly visits for awhile. That’s a big goal.

I keep trying to find the words to thank my friend Kathy who has played taxi driver, host, caregiver and friend. It’s a remarkable act of kindness – especially after having me snore in her living room most of yesterday.

But I also have to again say thanks to the people I’m hearing from with words of positive thoughts and prayers. Prayer is most welcome. I learned I was on some church group’s prayer lists in 2015 and I didn’t even know it until after the fact. That’s very touching and appreciated.

My rather infamous hardheadness, the support of my friends, God’s will, and your prayers make for a powerful team. The kindness of my co-workers at Purdue University should be mentioned as well.

This gives me a shot at or near 100 percent remission. It’s a chance worth taking. I’m not sure I could/would do chemo again.

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Chemo, Day 3: Resistance is futile

The reality of six straight days of chemo therapy sinks in as I settle into my reclining chair this morning (4/12). I had four chemo drugs in 2015 one day every three weeks, three times, then the same protocol three more times on two-week rotation.

My winter routine diagnosed in October 2016 was two days – back-to-back – with Bendamustine one day then Rituxan and Bendamustine the next. I did that once a month for four  months. The regiment made me cancer free – but to explain, my cancer came back in about a year – not good. I’m sitting here cancer free today but with a window of opportunity for a prolonged period of cancer free life or even a full remission. The procedure is done when you are cancer free.

borg implant

I’ve had this port in my chest since April 2015. Here is is with the attachment in place – quite a Borg implant, dont’ you think. It stays in, protected by a nifty water seal until Sunday. The nurses access my port via the tubes hanging down. Showing more tube would have been too much for some people! lol

My stem cells (5.6 million of them) were harvested last Tuesday – they are in the freezer until next Monday. In between I’m getting one of the most intense chemo therapy treatments possible. I started Monday with Carmustine. Yesterday through Friday I make two visits a day – 7:30 a.m. and 3:30 p.m. I get the same two drugs each visit – Etoposide and Cytarabine.

 

Monday’s drug is mixed with an alcohol substance. Not the kind that makes non-dancers want to dance or people say bad things or touch inappropriately, the kind that leaves you with a sickening headache. My doc and nurses both said it would be like a bad hangover and they were certainly right. It was a more unpleasant start than I had anticipated.

My doubleheader appointment yesterday was a breeze in comparison. I had a little low-grade chemo fog after the second but not a bad day.

Of course, along with all of this goes medications – something I’m not very used to and hadn’t had much of through my two previous treatments. I take three tables – two different medicines – every day, twice a day to prevent nausea. I take an anti-viral as a precautionary measure (with more medicinal immunity protectors to come). I also have a nausea tab I take before bed to help me sleep. And, I rinse four times a day with a salty-tasting solution to protect my mouth from mouth sores which often accompany this treatment.

The two-a-days end Friday and then I get the grand finale – Melphalan. That seems to be the knockout punch after just getting slapped around for a week. The most-veteran nurse on staff, a no-nonsense type I generally like, put it this way. “Well, you want the truth,” she said more in a declaratory fashion than inquisitive. “About Sunday night or Monday morning you’re going to feel like a Mack truck ran over you. Then that truck is going to roll back over you and drive over you again.”

Oh.

One of my doctors, and technically I have four, told me yesterday that after the chemo ends and for most of next week I probably would feel like eating two bites of yogurt for breakfast and maybe a cracker. Lunch, he said, might be three spoons of chicken noodle soup and if I was able maybe two crackers.

Obviously, that’s the low of the lows. My immunity is gone – all the way down to the simplest scratch, fever or bump becomes a concern. I will be wearing a mask virtually everywhere out side the home where I’m staying. Traffic is restricted in and out where I’m staying. And, we prepare to do all sorts of sanitary things around the home. I’ll be quite a wimp.

After Saturday’s chemo, I have to come in for blood tests briefly Easter Morning but no treatment. A nurse will remove the attachments to my chest port. My “re-birth” the staff likes to call it – will be done Monday. That means my stem cells will be defrosted, put in a drip bag and returned to my body via the port I’ve had embedded in my chest since April 2015.

The start of that wimpy period is the toughest of the entire process. I may need transfusions and any number of other treatments to keep me as healthy as possible at a point when I have none of my own defenses. That lasts around eight days. After returning cells Monday I continue to visit the clinic daily for them to keep an eye on all the mess described above. I also resume Neupogen shots which boosted my white count initially before harvest. The idea is my returned cells are seeds and the Neupogen is fertilizer.

Eight days after replanting, my immature cells should be big boys kicking out white cells. Then the long process begins to get me from less than 100 cells to up around 4000. That is going to be the point where I need support and self-discipline. I feel like I didn’t push myself nearly hard enough in 2015 post treatment. I must force activity … moving around house, walking outside … staying out of a recliner all day. I’ll heal faster and feel better.

I write here a lot about attitude. I’m admitting this was scary going in to it. I was surprised how rough Monday was but happy the routine I’m in now isn’t as profoundly impactful. But the roller coaster goes down a Beast-size hill (nice King’s Island analogy) at start of next week when I crash to rock bottom. I’d be lying If I didn’t admit that’s an anxiety-ridden notion.

The staff at Saint Francis Cancer Center is marvelous. I like the mixture of veteran caregivers and the young nurses who all have a good consistent answer to my questions or insist on going and finding one.

I’ve given them minimum guff. My BFF Kathy has been a marvelous caregiver. I know she will be great. I obviously don’t know exactly how next week will go – but I know I’m going to be very dependent on my best friend. I hate to be in that position but have a world of appreciation for a friend like that. Too many people never have a friend like that.

By the way, cancer sucks.

Chemo – well, it sucks even more.

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