I wanted to give a more positive update than my last few postings, in advance of my sixth chemo treatment scheduled for this coming Tuesday.

FEELING MUCH BETTER

I’ve been feeling a lot better since Thursday – I would say as close to 100% back to feeling completely normal as I can remember feeling in almost a month.  It’s been a rough stretch of time between the last couple of chemo treatments and being briefly hospitalized – and it’s really nice to be feeling nice again!

It’s allowed me to return to a normal diet, and the chance to eat all my favorite foods.  We’ve had my favorite breakfast (Huevos Rancheros) each of the last two mornings. I ate some Lamb Korma from Kashmir on Friday night when Luis and I went over to Jill’s house to celebrate her new amazing job with Breeders’ Cup and play cards. I had a deep dish pizza on Saturday for lunch. I even treated myself to a glass of Prosecco the last two evenings – a very, very rare adult beverage for me!

I’ve also been able to get out of the house a few times the last few days.  I had been cooped up for weeks, so it’s been very nice.  Like I said, we went to Jill’s place on Friday night.  On Saturday, Luis and I joined Mom & Dad for lunch at BJ’s Brewhouse. And both today and yesterday we took Marco to Cherokee Park for some play time at dog hill.

HOBBLING

However, I have been hobbling around for the past few days…  I still seem to be making my own obstacles from time to time.  This time, it came from stepping on a pair of upright tweezers, which stabbed pretty deep into my right foot.

A reasonable question would be: Why were there upright Tweezers?  Well – funny you asked – our upstairs tub drain doesn’t stay open, so for the last few months we’ve been jamming a pair of tweezers in the stop to let the water out after baths, never thinking this could be a potential hazard… but, it became a hazard on Wednesday night when I stepped into the tub while reaching for something on the other end…

It was extremely painful to pull them from my foot, and there was a massive amount of blood – and it hurt for 3-4 days (like a huge bruise on the bottom of my foot) but it’s all healing up nicely as I use the many leftover supplies I got from the ‘wound specialist’ from my thumb episode last month.

My goal is to make it through the rest of treatment without any more self-inflicted wounds!

TREATMENT #6

It’s scheduled for this coming Tuesday at 10am.  I was nervous about the last treatment, but I am full of optimism for this treatment.

I’m coming into this round feeling healthy and strong, fresh off the highest White Blood Cell count I have received since before treatment began back in January.

This will be the final treatment of Cycle 3, which means that we are AT LEAST half-way through if we need to do the full six cycles of treatment. Of course, I am still hopeful for less than that, but it will all depend on how the PET Scan comes back.

PET SCAN

We’re still at least a couple weeks away from my next PET Scan, tentatively scheduled for the week of April 4 (the date of my next treatment following this week’s round).

I’d be lying if I said that I didn’t have high anxiety over this.  As it draws closer, I find myself thinking about it more and more often.  And when I think about it, I almost can’t help but falling into the Google death spiral of looking up info about failed first-line treatments, ‘what are the odds of achieving remission with ABVD,’ etc etc etc.  Much of this happens around 3am.

I need to find a healthy way of dealing with the anxiety over the next few weeks – until we get the results and know how we’re moving forward, for sure.

FAMILY VACATION

My family has scheduled a big family vacation for September, and I am so excited!

We’re going to Myrtle Beach for a week in the middle of the month.  My Aunt Marilyn is renting us a BEAUTIFUL ocean front private beach house with a gorgeous pool!  THANK YOU MARILYN!!!!!!!!!!

Ideally, I’ll have been cancer free for several months prior to this trip. I can’t wait to spend a care-free week with everyone in the family!

Luis and I are also trying to plan our own getaway immediately after treatment is over — but we’re waiting on the PET Scan results before we book anything.

I’ll let everyone know how I’m doing after Tuesday’s treatment. Hopefully, it will all be good news!  Thanks again for all the continued prayers and well-wishes!!!!!!!

Much Love

Merv

I just wanted to give everyone a quick update. It’s now been a week since I’ve gotten out of the hospital, and I’m feeling better.  Not fully back to 100%, but better than I was feeling a week ago!

 

CHEMO #5

I got out of the hospital on a Monday and we powered through with Chemo #5 on the Wednesday.  I was nervous going into the treatment, since previously I had not responded well to treatment when I had medical issues preceding chemo.

These fears were not entirely unfounded, as this chemo treatment has been more of a struggle than several of the previous ones have been.  Each day I have struggled with mild nausea, stomach pain, and a general tired feeling.  But nothing has been so overwhelming that it’s stopped me from going about doing things as I normally would – still working during the days, keeping a somewhat normal sleep schedule.

New side effect…  My eyebrows are starting to thin and become patchy.  It’s tough to tell what state the hair on my head is in because I keep it trimmed so short… but I can definitely tell that my eyebrows are thinning – especially my left eyebrow.  Luis says it looks trendy – but no. 😉

 

PET SCAN

We had thought that we would be scheduling my next PET Scan to follow my next treatment on Tuesday, March 21. That treatment is the second and final treatment of my third cycle, and they had told us that the PET Scan would come after the third cycle.  But what they apparently actually meant by that was that the scan will be scheduled after the full conclusion of the third cycle – and the test won’t actually take place until after the start of my 4^th cycle!

It’s pretty disappointing, because we’re anxious to get a real update on how the cancer killing is going.  It’s nice to have been able to observe my tumors shrinking in real time, from what I can see and feel along my neck and shoulders, but I really am anxious to get a scan that hopefully says I am cancer free or damn close to it.  It’s not a huge delay, but it’s still over 3 weeks away now when we had been expected something in about a week’s time.

So, to recap, we’re looking at a PET Scan around the week of April 3.  And after that, we hope to know a lot more about how treatment is going and what treatment lies ahead.

 

BLOOD TESTS

Dr. Stevens’ is on vacation so his RN, Dale, is in charge in his absence. She scheduled a blood test this morning just to check on my levels. This has not been done before and honestly I don’t know what triggered the need for such a checkup – but we went and the results were excellent.

My White Blood Cells have been hovering in the 2-3 range, when “Normal” ranges from 4-8.  When I went into the hospital, my WBCs plummeted into the 1’s.  But today, they were a 4.6!  Well into the “Normal” range for a fully healthy person!  Plus, my Neutropenas – which has gone as low as 0.1 (when a normal range is over 2) were above 3!  Excellent results all around.

 

NEXT CHEMO (#6)

My next treatment will be on the 21^st as I move back to a Tuesday schedule. My nurse, Delonia, doesn’t work every day but she works every Tuesday. We really like Delonia and she enjoys spending time with us, so it works!

We love just about everyone at the Norton Cancer Institute. Today, I went to Kentucky Derby & Sports Memorabilia on Dixie Highway and purchased a case of Derby Glasses. My friend Krista set me up with the owner, Steve Witt, and he gave me a great discount.  I’m going to fill the glasses with some Easter candy and bring them up for the nursing staff next week as a thank you for taking such good care of us.

 

BATH BOMBS

My relaxation method of choice recently has been taking baths.  I’ve found that is often settles my stomach and makes me less barfy.  I’ve not ever really been into taking baths, but recently I have found them to be very calming.

I bought some ‘bath bombs’ off Amazon, and I really like them!  They’re good smelling and add a little something extra.

 

BRITISH BAKING CHALLENGE

Luis and I have started watching the British Baking Challenge on Netflix.  It was tough to talk me into watching a competitive bake off show, but I’m really into it!  The drama is intense!  I’d like to say it makes me want to start baking – but really, it just makes me want to eat baked goods that other people bake!  I bet my Uncle Jerry would be really into this show if he had Netflix.

Anyways, Luis had watched the first season without me. But we’ve completed Season 2 and started Season 3 last night.

I’ve also subscribed to Hulu now, so I can stream any Golden Girls episode that I want, whenever I want!  What a world we live in!!!

 

That’s all for now. Much love!

-Merv

 

The road to recovery took an unexpected and unpleasant detour this weekend with a 48-hour hospitalization due to a stubborn fever brought on by a stomach bug.  This was my first time ever having to stay overnight in a hospital, and I’ve decided I don’t like it.

I’m feeling completely better now. We got home this afternoon and I’ve had time to take a good nap and a shower, so I’m feeling back to myself. Chemo has been backed up a couple days to allow for some recuperation.

 

STOMACH BUG

The stomach pain started on Monday of last week.  Previous to Monday, I had been sailing through my 4^th chemo treatment with extremely mild side effects – it had been a much better experience than the 3^rd chemo treatment.

The pain was very mild, but it was persistent and lasted all day without relief.  If was a dull, achy feeling – definitely not gas nor cramps, though it felt more like that latter. I knew it wasn’t due to constipation because, a week after treatment, I had already returned to a reliable bowel movement schedule (10am! Time to poop!). And the pain, although annoying, didn’t affect my appetite, as I was still as hungry as normal, and my diet didn’t seem to affect my stomach pain in either a positive of negative way.

Of course, I kept expecting it to go away on its own – but the pain neither worsened nor relented, and by Thursday I had simply run out of tolerance and called into Dr. Stevens’ office.  After explaining my symptoms, they put me on Protonix – which struck me as an odd choice, because that is primarily a remedy for acid reflux, something I’ve battled since the start of treatment and not something I associate with persistent stomach pain.

 

SYMPTOMS + FEVER

Things took a turn for the worse on Thursday evening around bedtime – which is about 9pm since treatment started.

Shortly after going to bed, the nausea and diarrhea hit in a pretty massive way.  Although I didn’t actually throw up all that much, it did mark the first time since treatment started that I actually physically vomited. And the diarrhea was relentless – I was probably sitting on the toilet every 30 minutes or so.  The aches and chills were so bad that I was mostly rolling back and forth of the bed on top of the covers.  I got no sleep on the night.

I did, however, have the presence of mind to check my temperature throughout the night and I never spiked a fever, which I thought was odd since I was having aches and chills.

I finally was able to get to sleep around 7am, and slept until mid-morning. I woke up with the persistent stomach pain but less of the other symptoms. I took my temperature:  101°

I called into Dr. Stevens’ office. They had me take some Tylenol and come in right away.

 

FRIDAY @ OUTPATIENT

I went into see Dale at Dr. Stevens’ office on Friday afternoon. By the time they saw my, the Tylenol had reduced my fever to just shy of 100°. They took my CBC and warned me that if my White Blood Cell count was too low, they may have to hospitalize me.  Luckily, at the time, my count was (barely) above what would require hospitalization – a 2.27 (which is about where it has tended to be the last couple of months)

They put me on a saline drip for an hour, and sent me home.

For the most part on Friday night, I was feeling a bit better, although the stomach pain persisted. I ate like normal.  But on the evening around bed time, the diarrhea and nausea returned, although much more mild than the previous evening.  We decided to delay our Saturday activities to Sunday, which was collecting furniture from family members to fill our still mostly empty house.

 

SATURDAY MORNING

I woke up thinking I was feeling much better on Saturday morning. I wasn’t having any nausea or vomiting, and even the stomach pain seemed to be less than what I had been experiencing. We had pancakes for breakfast and watched a little TV.

But by about Noon, I started to feel the aches and chills creeping back. I decided that I would try to nap them away, but looked to take my temperature before I did, just in case. But again: 101°  😦

We spoke with Arturo, Luis’s cousin who specializes in blood cancer, and he suggested heading to the emergency room for evaluation. I was displaying an episodic fever which could be symptomatic of an underlying infection.

After some tears, we went back to the ER …

 

EMERGENCY ROOM

Luckily, they took us right back to a room at the ER, probably less than 10 minutes after arriving. After explaining all symptoms, they ran a new CBC to test my white blood cell count.

Bad news: my White Blood Cell count had fallen to a 1.5 – by far the lowest it has been since treatment has started. That, coupled with the episodic fever of over 100.5, required hospitalization. And they told us right off that bat that it would likely be a couple of days.

More tears. Staying at the hospital was the last thing I wanted to do. But really I didn’t have a choice.

They hooked up fluids to my port, and started an IV in my arm for anti-biotics. They said I came into the emergency room very dehydrated! I just couldn’t even believe it, since I drink at least 1 gallon of water every single day! I guess the diarrhea just took it all out of me.

 

IN PATIENT ONCOLOGY

After about 5 hours in the ER, during which my mom came to visit before picking up Marco, I got a bed on the fifth floor of the hospital, the in-patient oncology unit. It’s really nice. All rooms are single rooms, and very roomy. There’s a nice courtyard which can be seen from the window. The nursing staff is incredibly wonderful.

 

My fever stayed under control for the remainder of Friday night, hovering in the range of 99-and-change. And my symptoms were greatly reduced.

They kept rotation me between saline and antibiotics throughout the night and into Saturday. Mercifully, they took the IV out of my arm on Friday night; unfortunately, I’m now displaying the same type of blood clot related pain symptoms in that arm which I still periodically have in my right arm.

They didn’t allow me any food on Friday evening, which meant I went from Friday morning to Saturday morning without solids (save for a contraband cup of soup which was snuck in). So by Saturday morning, I was pretty hungry.

Martha, Jerry & Marilyn came to visit on Friday night and sat with me while Luis ran home to collect all the things we needed for a 2-day hospital stay. Mom and Gabe provided text message updates on how Marco was settling in with the grandparents. We finally canceled our plans to collect furniture on Sunday.

 

SUNDAY – FEVER RETURNS

Generally, I was feeling pretty good for most of the day on Sunday.  It was good to get some proper meals, even if it was hospital food (which I had never actually tasted but in fact lives up to its poor reputation).

I was pretty tired, as I was unable to get good quality rest. The nurses are in the room every couple of hours either getting my vitals or doing something with my IVs. Plus, it’s just generally tough to sleep in a bright room with IVs connected to my chest port when I’m a stubborn stomach sleeper. It’s also weird to sleep with my husband across the room. I would complain about my mattress quality too, but Luis’s couch didn’t look too comfortable either.

Nevertheless, I was feeling good throughout the day. My vitals were strong throughout the morning and afternoon… Mom and dad came up to visit for a bit in the early afternoon. I ate breakfast and lunch without issue.  The most suffering I went through was the indignity of having to provide a stool sample for the nursing staff – but at least I was pooping solid again!

Dr. Stevens stopped by – I wonder if he works every day? – and chatted with me briefly in the morning. He said in the absence of fever and if my white blood cells rebounded a bit, he’d like to aim for going through with chemo as planned on Monday. Excellent news. Things looking good…

Until 4pm, when they took my temperature and came back with the unexpected: 101° again!

Tears, again. How could this be! I was still feeling well – even the week-long stomach pain had completely subsided. What would this mean? Would I have to stay longer?  What did this mean for chemo – would we have to delay?

For some reason, they withheld Tylenol – and thus, the fever persisted for several hours, even in the absence of symptoms. My cousin Greg stopped by and we had a nice visit.

Finally, I got some Tylenol around 8pm, which quickly seemed to break the fever.  Around 9pm, I was down to 99 and change. Exhausted, Luis and I were able to try for sleep around 11pm after our nurse was done with most of what she needed.

 

RELEASE

When I woke up around 7am this morning, I was burning up and drenched in sweat. I was terrified that the fever had returned.

But actually, the thermostat for the room had broken, and the room was actually like a sauna.

It appeared the fever was gone for good, as all of my temperature readouts today were right at 98.6°, and all of my other vitals were perfect.

Dr. Stevens stopped by again. After reviewing everything, he decided to delay treatment until Wednesday.

I was released right at Noon. I came home, ate some pizza, pulled the curtains, and went straight for a long nap.

 

LOOKING FORWARD

Although any delay is cause for disappointment, it’s worth remembering that my normal chemo day is actually Tuesday, so it’s really just a 1-day delay from my normal schedule.

I’d be lying if I said I wasn’t a little nervous about this treatment. Remember, I had a lot of trouble with my third treatment when it was preceded by medical issues, and these issues seem to blanch those issues.  The one better thing, though, is that I am not on a lot of additional medicine this time around – no oral anti-biotics, no aspirin – so maybe that will make a difference.

After experiencing what it’s like to be hospitalized for an infection, we’re going to take my travel ban a lot more seriously. No more trips to the grocery store or restaurants for the next 4-8 weeks. It’s just not worth the risk of picking up another infection and having to go back.

 

Anyway, that’s a recap of my last few days. It was a struggle, but it’s over now and I’m back to feeling well. And I’m looking forward to tackling the second half of my cancer treatment with the same determination and positive attitude with which I faced the first half of treatment, which is now over.

Thanks again for all the prayers and positive thoughts – and for keeping up with my progress!

Much love,

Merv