Luis and I went in for our second round of Chemo today, and things went pretty smooth. I was done with Chemo around 1pm… it’s nearly 6pm now, and I’m still feeling quite well.  Here’s the day’s run down:

 

MORNING

We had an early call time. Our appointment was for 9:30am, but we’ve found that they take us back almost immediately upon arrival. So we aimed for and arrived at the oncologist’s office before 9am.

I’ve fallen in love with the frozen quiche from Trader Joe’s. So before departing, that’s what we had for breakfast this morning. If you haven’t tried them, you should. I prefer the broccoli to spinach, but both are quite good. And they are only like $3.

In related diet news, I’ve decided that I am “off diet” for the duration of chemo. Just going to eat what tastes good for a few months, supplemented by some food recommended for treatment (salmon and seafood heavy, certain fruits & veggies).  Luckily, I generally tend to eat healthy without thinking too much about it. But I am giving in to my sweet tooth a bit more often. And I’m okay with that.

I packed up my chemo bag in my new “Merv Beats Cancer” tote bag. The new mini-chess set, a book of sudoku, snacks, blanket.

 

PRE-CHEMO

True to form, Dr. Stevens’ office took us back to get started right when we arrived, even though we were over 30 minutes early for our appointment. I suspect this is because we don’t actually require any of Dr. Stevens’ time. We are wholly served by the nurses on staff, all of whom have been incredibly nice and helpful; they are each the types of people that make you truly believe they really come to work each day enthusiastic about helping people.

Vital Signs: first up, they take my vitals. My weight was the same as two weeks ago, and my blood pressure and temperature were both perfect. This is good news, since my home blood pressure machine seems to think I have high blood pressure, and all of my at-home thermometers seem to think my body temperature hovers between 94 & 95 degrees…  So, in short, all good here!

 

WHITE BLOOD CELLS

Here’s where we ran into problems…

My White Blood Cells (WBCs) have fallen low. Like, really low, and that can be a problem.

First, they had to receive special permission from Dr. Stevens in order to administer chemo. I was in the range where they sometimes might decide to not give chemo.  Luckily for me, Dr. Stevens was referred to as an ‘aggressive’ oncologist and rarely defers chemo, and he decided to move forward with today’s treatment as planned.

Here’s the read out of my CBC. I’ve highlighted the two important numbers here.

WBC – As you can see, my WBC count is a 2.32.  This is well below the accepted range of between 4.5 – 11.0.

NEUT – As it was explained to me, the NEUTs are my “baby WBCs in the making” or the ones that are in the queue to become healthy WBC to replenish the supply. But as you can see, I don’t have a lot of NEUTs getting ready for the call of duty!  The accepted range is between 2.0 and 8.8; the test showed my level at an extremely low 0.17.

So… what does this mean?

It means I am extremely susceptible to infections. If I get a fever over 100.5° then I have to call the doctor right away. Infections during chemo can be life threatening and can escalate quickly. That’s all a bit unsettling.

I am under strict orders to minimize activities which put me in crowds of people, at least for the next two weeks.  The example the nurse gave was to avoid doing things like going to the grocery store.  She rolled her eyes when I asked if I could fly on a plane.  I decided at the point not to ask about hanging out in Las Vegas casinos for a few days this weekend.

So on the (strong) advice of the oncologist, I’ve gone ahead and cancelled (canceled?) my Las Vegas trip this weekend for the National Handicapping Championship, even though I’m physically feeling 100% fine. Honestly, I’m devastated. I was really looking forward to the trip. I’ve planned a swanky party for our clients and prospective clients in the Penthouse Suite of the Treasure Island which I now will not be able to attend (my job is hard); I know it’s in extremely capable hands, though. I’m also disappointed that I won’t get to see the dozens of folks in the horse racing industry that I otherwise rarely get a chance to see.  But I suppose my health is more important; NHC will be there again next year. Gotta stay healthy and kill the cancer right now.

I also can’t be around people who are sick or might be sick.

Platelets – The one bit of good news is that my platelets are doing good and well within normal range! These can also get out of whack with the chemo treatment, but they seem to be doing well so far.

Daily Shots – For the moment, they are not signing me up for daily shots. The most common are called Neupogen and there is also something called Neulasta. But basically, they are shots that I would have to get (every day – in the stomach!) which would help recover my WBC & NEUT counts.  We’ll reevaluate after my next appointment on February 7.

So yea… the blood tests were a bummer… but we did move onto chemo.

 

CHEMO

There’s really nothing much to say about the actual administration of today’s chemo… it went just about exactly as the first treatment.

That IV they stick in your arm for chemo is a real bitch! I’m a pretty big boy about needle sticks, even if I don’t like to watch it happen — and I’ve been stuck dozens of times in the last two months. This one HURTS! But it only hurts for about a minute while until they have finished collecting blood and take the needle out, leaving in the softer IV tube.

The order switched up a bit… I did the B & the V first (the clear syringe injections), and then the A (the red one that makes me pee red), followed by the D (the drip which takes 60 minutes to finish).

I did have some trouble with my tubes today… They used my right (dominant) arm today instead of my left arm like last time.  This made it tricky to do anything for the several hours I was hooked up.  And late in the process the machine stopped twice due to ‘kinks’ in the tube, likely due to me trying to play chess and cards.  If I can, I’ll try to request my left arm next time, if it’s all going to the same place.

My nurse today was very knowledgeable about the treatment and gave us some good pointers. She was also able to explain my WBC test very well.  Again, I really like everyone I have come into contact with in Dr. Stevens’ office.  She also wrote me a prescription for 60 of the post-chemo steroid pills, so hopefully I don’t need another refill and don’t have to do another co-pay for those.

Luis and I played chess and rummy. I know it goes without saying, but I won both games or chess and the game of rummy – quite dominantly, if I do say so myself. Luis also taught me how to play dominos; I don’t think I’m into it that game he taught me, though; the ways in which I prefer to enjoy dominos are either 1) put many of them in a long row and then knock them down, or 2) call them to order delivery of thick crust, sausage & pepperoni.

We live streamed a little bit on Facebook Live. I tried to stretch it out a bit longer to give people a chance to join, but I just run out of things to say! Plus, you all know how shy I can be. Anyways, that has been a special request from Mom, and I can’t say no to Mom!

Also, the most painful part of chemo has been ripping the tape off the IV after treatment and pulling all the hair out of my arms! Immediately after this blog, I am shaving my arms!!

 

MUGA SCAN

This came as a surprise, or at least something which hadn’t previously been mentioned. They’ve scheduled me for a MUGA Scan, which has to do with my heart. Here’s a pithy explanation I found using a Google search from Heart.com:

A MUGA scan is a test using a radioactive tracer (called a radionuclide) and a special camera to take pictures of your heart as it pumps blood. The test measures how well your heart pumps with every heartbeat.
CLICK HERE for more information.

This is a routine test for all patients undergoing the ABVD treatment. There is nothing that happened which caused specific concern, it’s just routine.  I just hadn’t been told about it, so it came as a surprise.

Anyways, the test is tomorrow at 1pm ET. I really need to do a bit more research on what to expect, but hopefully it’s easy.  I can’t decide whether to fly solo or ask someone to come with me; Luis is working from Columbus tomorrow. I hate to bother anyone for something which might be pretty trivial.

Will report on this test tomorrow. Don’t know how long it takes to get results.

 

POST TREATMENT

After we left treatment, we went across the street to get Senor Iguanas. I got the lunchtime steak fajitas.  I know what you’re thinking: “Merv!!! After last treatment you went to Qdoba and got the 3-Cheese Nachos and triggered your Acid Reflux for a week! What are you thinking!? Don’t you learn!?”

I can’t help it!! I love Mexican food! It’s my favorite! And I deserve a treat after chemo!! Besides, my acid reflux has been extremely well behaved since I started taking the daily off-brand Pepcid pills.  And more besides, I like to live dangerously.

Dad came over to drop off my steroid pills, and also picked up some of our laundry.  Mom is going to stop by tomorrow and give the house a good deep clean – especially important now considering my depleted immune system!

It’s about 6:45pm and I’m still feeling fine. I don’t have an appetite just yet, but I’m not feeling nauseous or tired. If anything, my mind just feels a little hazy, but nothing serious.  I do feel a little amped up on the steroids…  They pump me full of steroids before chemo, and also I took steroid pills about an hour ago. I’m worried that I could be looking at a sleepless night.

I’ll be sure to report tomorrow night following the MUGA Scan and on how I am feeling!

 

Next Appointments:

Tomorrow @ 1pm:  MUGA Scan @ Norton’s outpatient.

Tuesday, 2/7 @ 10:40am:  Chemo Treatment #3 & Dr. Stevens consultation

 

Much Love,

Merv

We have two days until our Chemo Treatment #2, which will complete our first full “Cycle” of treatments. We will for sure have three full cycles, and possibly four. So after this next treatment on Tuesday, we’ll be either 33% or 25% of the way done with chemo treatments, god willing!

 

Daytona Beach

I snuck away for a couple days to do a long planned business trip which took me to Daytona Beach for the weekend. BetAmerica sponsors the country’s championship greyhound race, and I was down there to look after the first championship for greyhound bettors; we hosted a contest with $25,000 at stake for the players. That amount of prize money isn’t considered especially large for horse racing players, but we think it’s the largest such contest ever offered for dog players.

I even got a chance to get in the Winner’s Circle photo for one of the stakes races. Check it out.

Luckily, everything went very smoothly both in terms of business and health.

I was a bit worried going in that this trip would push me to the max in terms of energy and fatigue. I knew this trip would see me tasked with staying out rather late with key clients a couple nights in a row.  Ever since my first chemo treatment, I had regularly been going to be no later than 9pm, and sometimes sleeping 11 hours or so if my body would allow it.

Fortunately, I was able to do so without any trouble. I did get a bit tired on the evenings, but nothing too bad. And we stayed out late both Friday & Saturday night – well past midnight on both evenings.

The weekend was also completely free of any side effects. Everything I’ve spoken about at length the last 10 days, nowhere to been seen.  No acid reflux, no mouth pain, no tummy issues, no nausea, no insomnia… nothing. I ate whatever I felt like eating without fear of triggering a response, all weekend.

I even had the chance to lay on the beach for a couple hours on Saturday! The weather in Daytona obliged at 80 degrees for the afternoon.

 

The Lump

I am so happy to report that “The Lump” has noticeably reduced in size. It’s taken me a few days to say that with a certain level of confidence, knowing that I wasn’t just wishfully thinking it’s receded. But it really has. It’s definitely smaller than I can remember it being at any time since before my very first trip to the general practitioner last summer.

It’s still there. I can still feel it. But it’s much smaller.

It really is a relief to be able to physically observe positive progress during treatment. In the absence of bad side effects, my mind wondered frequently whether the treatment was actually working! They warn patients about this phenomenon – and they specifically tell you: Just because you don’t have any side effects does NOT mean your treatment isn’t working!  But despite the warning, it’s something which definitely crosses your mind.  So being able to feel this progress helps to keep me positive and excited about the next treatment.

 

Next Treatment

I’m back to feeling 100%, and yet I know I have Treatment #2 coming up now less than 48 hours away. Even if I go through exactly what I went through the first time, I’m feeling pretty confident. The experience was very mild, and I can easily weather that storm for each treatment if that’s the case.

I am hopeful that with the experience of one treatment, that I am better prepared for the side effects. For the acid reflux, I am taking a daily pill (off brand Pepcid) that seems to have worked well. If the mouth pain recurs, I have the expensive and highly effective mouthwash; although I am hoping that the mouth pain was more attributable to the pre-chemo dentist visit and that those pains will not happen again.  I am well stocked on anti-nausea medicine.

I’ll also be interested to get my pre-chemo blood tests. They’ll tell us how my white blood cells are reacting to the treatment so far; we’re hoping they haven’t fallen too low. They also have some other indicators they’ll be looking for, and I’ll report fully on Tuesday how they come back.

 

Care Packages & Cards

Before I left on the trip, I got a nice care package from Amanda. She has MERV BEATS CANCER screened on a nice tote bag, and also sent a fuzzy warm blanket embroidered with the purple Hodgkin’s Lymphoma ribbon. The tote will be a great ‘chemo bag’ to bring the necessities for the five hours of office stay. Thanks, Amanda!

I’ve also gotten a several more Get Well cards, which are now taking over my mantle in the front room. Most are from close friends and family, but some are from those who I would never have expected – including a couple from the faculty at my old grade school St. Albert the Great!

And sincere thank you to those who have send gift cards or cash to help; it really had helped us with the financial stress. We never imagined that we’d have to pay our medical deductible twice in the span of 4 weeks.

Honestly, thanks to everyone who has taken the time to send us care packages or cards or Facebook messages or texts, and to those who keep us in your prayers daily and send good thoughts on the regular. The positivity keeps us positive.

 

Much Love,

Merv

I’m now in my seventh day of treatment – my sixth full day after chemo. And I am again happy to report that I am mostly feeling good!

I did decide to call in for reinforcements today for some of the more nagging side effects I’ve been facing. I’m lucky that Dr. Stevens’ office is quick to listen to my side effects and quickly prescribe remedies.

Side Effects

Mouth Pain – This has leapt to the top of the list, as it’s the only one seeming to get worse as time goes by, instead of better. At the recommendation of the oncologist, I went to see a dentist prior to chemo. However, I suspect that the dentist did too much work too close to chemo. They actually did deep scaling cleaning on both sides of my mouth – including one side the day before chemo. It’s these areas (where my gums meet my teeth, and the exact spots where they injected my mouth with the numbing agent towards the back of my mouth) that are now turning into painful sores. I think the mouth just didn’t have time to heal, and now it’s not able to properly heal. So I’m left with pain.

They prescribed me an anti-fungal mouthwash with lidocaine. So it provides instant relief (I couldn’t wait to swish it around – as soon as I got to the car in the Kroger parking lot, I was swishing) and it’s also supposed to heal the wounds. I am really hopeful this is just a onetime thing, and not something which happens after ever chemo treatment.  The mouthwash was $50. Yuck.

Fatigue – It turns out I am not superman, and the fatigue set in this weekend. It wasn’t completely overwhelming, but I was extremely content to be extremely lazy all weekend. I barely left the futon, which led to Luis and I watching the full first season of The OA on Netflix (it’s okay but not great). But I was back to work today with a full day, not feeling too tired. I went to lie down for about 30 minutes after lunch just playing on my phone, but that’s it. I’ve never been very good at napping.

Acid Reflux – This continued to bedevil me all weekend, but today is actually my best day of acid reflux since chemo day, so I’m optimistic that things are turning around. Nevertheless, I did ask for a remedy from the oncologist and they recommended I pick up some Pepcid, which is over the counter. So I went to Kroger and I had two options: 25 capsules of 20mg brand name Pepcid for $12, or 50 capsules of 20mg generic brand for $4. Obviously, I went with the latter. I hope that was a good call.

Constipation – I’m a little backed up. I’ll just leave it at that.

Current chemo mood:

Still no nausea. Although the Milk of Magnesia really puts that to the test.

 

New Plants

My aunt Marilyn came over this afternoon and brought Luis and me some new plants for the bedroom. Apparently, they are supposed to help me sleep and purify the air.  One is an Aloe Vera plant, and the other is an Exotic Angel plant.  The Aloe Vera is for help sleeping, while the Exotic Angel plant purifies the air.

She was also seeking some lavender, but that’s not in season. Instead, I have a lavender scented candle. I’ll take it!

I’ve been taking my Phenergan (anti-nausea medicine) for sleep. Hopefully these plants will do the thing and help me get some quality sleep!  Thanks, Marilyn!

Next Appointments

Still nothing until next chemo, scheduled for Tuesday, January 24 – a week from tomorrow. In the meantime, I’m enjoying my “off” week. And I’m looking forward to my short business trip this weekend to Florida, which has been officially approved by my family oncologist, Arturo.

Much Love,

-Merv

I am now in my third full day after my first Chemo treatment, and I am very happy to report that I am still feeling very well!  Side effects have continued to be very mild, and getting milder by the day. And I’m even getting some good sleep.

I was worried that a few days after treatment would be the worst – when the steroids wear off. And I had read some blogs that mentioned many side effects don’t set in for a few days. So I’m cautiously optimistic about these side effects – knowing that I’m obviously not entirely out of the woods, yet.

 

SIDE EFFECTS

Acid Reflux – This continues to be the one I’ve tussled with the most this week. It’s not as pronounced as it was on the first day after treatment, but it’s still present at most times. So far, the only thing I’ve done to combat it is use Tums and stay away from known trigger foods. Actually, I’ve stayed away from most solid foods, but I’m making progress there.  I may ask them about a stronger remedy for acid reflux when I see them next, unless things get more severe sooner.

Tiredness & Sleep – The main tiredness I was feeling closer to the treatment date was clearly a lack of good sleep. But actually, I’ve strung together two nights in a row of good sleep. Two nights ago I slept for 8 hours. And last night, I actually slept for 12 hours!  I guess my body needed that.  I’ve found that the anti-nausea medication Phenergan really knocks me out. So I’ve been taking it early in the evening. Last night I took it at 8pm, and I was out cold by 8:30 – and I slept through until about 8:30 this morning!

In terms of sleep and fatigue, I think that’s a pretty good trade off. I’ll happily sleep for 12 hours a night if it means that I feel as refreshed, energized and productive as I feel today for 12 hours. That’s got to be better than feeling fatigued and lethargic when getting an average night’s rest, or less.  Still, I don’t really have an apples to apples comparison – I wonder how I would feel on an average day after treatment with a normal 8 hours.  So far, I’ve not felt fatigued or tired after a normal night’s sleep.

Dry Skin – I can feel this one creeping up on my a bit. Mostly in my hands, which are getting very dry. This could be somewhat self-inflicted. I have been doing a lot of hand washing, and as a shortcut I have sometimes used the waterless hand sanitizers. I know that these dry out my hands. So for now, I’ve discontinued use of those sanitizers and only am washing with soap and water. And I am also starting to use lotion on my hands (which I hate doing because it just feels slimy to me).  But, if it helps to keep my hands from being so dry, it’s a favorable trade off.  So far, I haven’t had dry skin elsewhere, but I am keeping watch.

 

DIET

Food – I have more or less stayed away from most solid food the last three days, but I am starting to get more adventurous. I have relied heavily on my juicer, and Luis’s sage juice making skills. I’ve have some concoctions whose ingredients might make you wince, but that actually don’t taste bad. Especially when the thought of different types of food that I know I like don’t sound very appetizing anymore.

Here are some of the staples of my diet the past few days:

• Juicer juices
• Applesauce
• Cottage Cheese
• Pudding
• Mac & Cheese
• Fruits (mostly pears and oranges)

Also last night, I had some white rice with almonds and pine nuts. Easily my most adventurous meal yet – and it went down very easy. Probably because it was delicious, excellently prepared by my chef of a husband.

Tonight I plan on trying some casserole that Jerry & Martha brought over this afternoon. It’s has rice & chicken, with a cheese sauce and some mild spices.  They also brought over some Banana Pudding with sliced bananas and vanilla wafers. One of my favorites!

Liquid – I’ve been hyper conscious about making sure I’m getting enough liquid, and I am 100% sure that I am hitting my goals.

• Water – I am drinking 1 full gallon of water every day, as measured by a gallon that I keep in the fridge and refill with tap water. I do remember reading that Louisville has the best tap water in the country, so there’s an advantage I have. I usually start drinking water after coffee, so by mid-morning I am fully over to water.
• Juice – I am drinking 2-3 full glasses of juice from the juicer every day, usually for lunch.
• Coffee – I drink as much coffee in the morning as my acid reflux will allow. On Day 1, that was only one cup. But today, I was able to have a few. I’m still not fully back to my full-blown coffee addiction, but I’m making strides.  I was worried that the huge reduction in caffeine would lead to headaches, which commonly happens when I forget to drink coffee in the morning; so far, this has not been a problem.
• Coconut Water – I’m still not a fan of the taste, but I have been putting one of these Vita-Coco pure coconut water packs away for the last three days. Supposedly, they are super healthy. They’re also expensive, so these may be on the chopping block.
• Alcohol – NONE! And not missing it.

 

Work

So far, the side effects of Chemo have had minimal effect on work. I’ve been able to work full, uninterrupted days, every day since treatment.

I do keep reading about “Chemo-Brain” and how chemo patients have trouble concentrating or struggle with memory. I hope my colleagues will be tender in pointing out any signs of chemo brain.

I am also fully optimistic of making both work travel trips over the next two weeks. Next week to Daytona Beach, and the following week to Las Vegas. Of course, both will need to be doctor approved! But if I’m feeling fine for Daytona, it’s a go. Vegas will depend on my blood counts taking in January 24.

 

Support Packages

We have received a number of excellent support packages from friends and colleagues this week! The amount of time and thought that goes into these really has Luis and I thinking how blessed we are to have such amazing people in our lives, in our corner, that love us so much.

Amazon has made a ton of deliveries this week. Here are a couple of support packages we’ve gotten:

BetAmerica sent over this wide variety of chemo crushing gadgets!  While I hope I don’t have to ever use the vomit bags – it’s nice to know they are there! The chess set is definitely more portable than the one I have, so it will certainly be coming with me on my next treatment on the 24^th. The tote makes for a great chemo-case to carry everything we need on treatment day. And I love the adult coloring book – I’ll be sure to share some of my masterpieces.

Thanks so much to all my friends and colleagues at BetAmerica for sending over this extremely useful gift basket!  So lucky to work for such a fantastic company full of so many wonderful people!

 

My BFF Erin, one of my groomsmaids from my wedding, sent over this lovely package of goodies. I love the scarf especially! We’re big into scarves, and this one is one of my instant favorites. Also of note, my favorite ‘feeling sick’ remedy – the cheap can of Campbell’s chicken noodle soup! There’s just nothing better for feeling better – good memory, Erin! Love you!!

 

I also want to be sure to thank everyone who has sent financial support either by way of cash or gift cards. I feel strange posting about it on the blog, but we’ve spoken on the phone and you know that our gratitude is sincere and immense during the time. So – thank you so much. You know who you are.

And as always, the Get Well Cards, the texts, Facebook comments, random phone calls – all so appreciated! Keeps me going strong every day. I think that this journey has been, while not easy, perhaps easier than I feared going in. I think a lot of that has to do with a positive attitude. And I think the positive attitude comes from knowing what a great support system we have, and the constant amount of support we get from everyone, every single day.

 

Sincerely, much love to everyone who is keeping up with us on the journey! More than I can express!

-Merv

Here’s a quick update to let everyone know how I’m doing on my first full day after receiving my first chemo treatment. I’ll try to go into as much detail as possible too, in case people are reading this in future about to go through chemo on their own.

But here’s the cliff notes: I’m doing pretty good!

 

Sleepless Night

I had a pretty sleepless night last night. I think I got about two hours of good sleep. I didn’t fall asleep until about 1am, and I was wide awake at 3am and up for the duration. I may have caught as much as 1 hr between 7:30 and 8:30 between Luis’s alarms going off.

I don’t know whether the reason I couldn’t sleep was due to the steroids from the pre-chemo drugs. They did say, and I have read online, that it can be difficult to sleep the night of chemo due to the steroids.  However, I have not been sleeping well for weeks – so maybe this was just another sleepless night. Or maybe it was a combination of the two.

 

Mild Symptoms

Acid Reflux – Far and away the most annoying symptom of the day has been my acid reflux. I have had infrequent acid reflux for years, but it can be pretty severe when triggered. By infrequent, I mean that I maybe have an episode once a month, or perhaps could go 5-6 months without a single episode. But the chemo seems to have triggered it, and it’s been pretty severe all day. So severe that I’ve been very careful about what I eat.

Nausea – So, I have some very mild nausea going on. Not so much that I think I am going to vomit, but I definitely feel just a bit queasy. That coupled with the acid reflux has had me very careful throughout the day. I did take my first prescribed anti-nausea medication today (Domperidone) and I have actually felt much less nauseous since taking this. I haven’t yet taken the stronger prescriptions which are optional to take, because I haven’t felt nauseous enough that I need to take them. Hopefully this will continue.

Tummy Troubles – I did begin having some trouble issues towards midnight. Again, this could be entirely chalked up to my dubious decision to eat Qdoba immediately following chemo. I took a couple Gas-X (we call them our ‘Little Green Pills‘ in public) and that took care of the issue. I’ve had extremely mild tummy issues throughout the day, but nothing so severe that I felt like I needed to take anymore little green pills. And at present, I’m not having any issues.

Tingling Tongue – When I woke up at 3am, my tongue felt tingly. Not like a hurting sensation, more like it was asleep. This has persisted throughout the day but isn’t bothering me as much now as it was this morning. I’m a bit worried this might be forecasting additional mouth issues, although I am hoping that’s not the case. Brush brush brush after every meal!

Tired – I am tired today, but I’m not sure how to appropriately attribute the blame. I only slept two hours last night, so am I tired because I didn’t sleep or fatigued by the chemo?  I’m not sure – and frankly, for having slept only a couple hours, I feel like I am less tired than I should be – which makes me think maybe the steroids are still artificially propping me up. Additionally, as mentioned before, I don’t know whether I couldn’t sleep last night due to steroids or just my always high anxiety.

Hair Loss – NONE!  Suck it, cancer. Still have my beautiful thick shaggy mop of hair.

When you list it all out, it seems like I’m going through a lot… but honestly, it doesn’t feel that way. All in all, I’m pretty happy with the way today has gone in terms of symptoms.

The mildness of the reaction has allowed me to work a normal full day at the (home) office and get stuff accomplished. I’m very optimistic about making at least one and hopefully two of this month’s work trips – the first being next week’s 48-hour excursion to Daytona Beach to attend the country’s most prestigious greyhound race and administer the most lucrative greyhound handicapping contest ever.

 

 

Food & Liquid

Appetite & Food – My appetite hasn’t been too affected, but with the acid reflux kicking in, I’ve been pretty careful about solid foods and only am eating in small quantities.

• I only had some orange juice and apple juice for breakfast (fresh from the juicer).
• I had one cup of coffee to get me started this morning (I usually have about 8 cups).
• For lunch I had a few fork fulls of instant Mac & Cheese.
• Mid afternoon, I had a small bowl of applesauce.
• Just now, I am snacking on a small bowl of cottage cheese.

Liquid Intake – I’ve been guzzling water all day long with my daily goal of water intake being 1 gallon. I went to Kroger today and bought (amongst other items) a gallon of drinking water that I’ll refill from the tap, as a way of measuring this goal daily.  It’s not an uncommon goal for me to have – I frequently task myself to drink a gallon of water a day, and sometimes succeed at this for 6-months at a time or longer.  This doesn’t include the other liquids I drink daily, such as coffee or juices. I’ve also purchased coconut water (disgusting but healthy), a couple different types of V8, and some Gatorade (this has helped me with nausea in the past, sometimes but not always related to alcohol, from which I am temporarily banned/restricted).  I also bought a ton of things that can be juiced, including oranges, apples (green this time for something different), lemons, cucumbers, parsley and a big fresh pineapple.

 

The Lump

We’re going to be monitoring the size and scope of “The Lump” that first sent me seeking medical attention six months ago.  I’ve read other people’s blogs who went to the hospital with similar neck lumps, that it decreased in size very quickly. It will be really nice if that happens to me, because I would love to see some early signs of things getting better.

We’ve taken a photo here. It’s really tough to get a photo that truly reflects how BIG this lump is. I mean, it’s really big; it takes up the lower half of my neck and is the size of a large grape at least. It’s just difficult to photograph.  Also shown in this photo is my surgery scar from my biopsy last month. Please disregard that annoying cyst near my collar bone; have had that for years and that’s not cancer, it’s just ugly.

 

 

Thank you!

Thanks again for everyone for constantly checking in on me. It’s never annoying like a lot of you seem to think it is – it’s always so positive and uplifting to hear from everyone! That’s what keeps me strong and positive.  I love each of you following along more than I can express.

 

Much Love,

Merv

 

Today’s Chemo treatment went about as smoothly as we could have possibly hoped. And at the time of writing this – about 8:30pm and about 4 hours after the last chemo drug went in – I am still feeling pretty okay. Hoping this continues!

Here’s a recap of the day and the procedure:

 

APPOINTMENT & PREP

We were scheduled to start at 1pm so they advised to get there around fifteen minutes early. Just because of the type of person I am, I left the house at Noon. I’m glad we left early, because we came upon a big accident at the intersection of Breckenridge & Dutchmans Lane. Everyone knows that’s already the longest light in Louisville, and we had to wait a few cycles as police were attempting to manually direct traffic. We ended up getting to the office shortly after 12:30pm.

They took me back very quickly to get my vitals, including weight and blood pressure. Weight is consistent. But my blood pressure was high, I think for the first time in my life. I will chalk it up to being nervous. It wasn’t alarmingly high – just 126/89. They were a bit concerned about the bottom number, but not enough to consider withholding chemo.

 

Lucky Room #13

They took us back to our Chemo Room…  Lucky #13!  The room is private, just big enough to me, Luis and a nurse or two. I really like the fact that we have a private room. All of the online research I had done indicated we would be in a big open chemo café. Given the choice, I’m quite glad we have a private room.

The room included a couple chairs on either side of one of the most ridiculous machines I’ve seen yet! It’s a machine meant for women that is designed for them to help them keep their hair. The way that it works is they put this big rubber burqa looking contraption on your head which gets down to freezing temperature!  It looks ridiculous, and apparently it’s not very comfortable or even effective!

Of course I can’t imagine anyone feeling very comfortable with a big rubber toboggan that’s freezing on your head for a couple hours!  Plus, the nurse said most patients still lose something like 50% of their hair, so it get so thin despite the preventative treatment that most shave and wig anyways.

I’ll definitely snap a better photo of this next time, but you can see it in the background if you skip down a few sections to a photo of us playing Chess.

 

Blood Work & Clinical Trial

They hooked up my IV, which actually stung quite a bit. I’ve probably had blood drawn or hooked up to an IV two dozen times or more in the past few weeks, so my arms are a wreck. That must be why it stung so much and for so long this time.  They had to take a LOT of blood, for two reasons:

• They have to test my blood before administering chemo for every treatment, to make sure my body is reacting appropriately to the chemo. They check to make sure the counts of my white blood cells and platelets are healthy enough to continue. There was no worry this time, since I had not previously received a chemo treatment; but it will become more important in subsequent treatments.
• I am voluntarily taking part in a clinical trial. My trial is strictly observational; they aren’t testing anything new on me. They are simply sharing my medical reports with Bristol Myers and monitoring my progress. This requires them to take three or four additional vials of blood every trip to the oncologist’s office. I’m hoping that future blood draws aren’t quite as stingy as today; but even if they are, I hope my participation in the trial helps many in the future, even if just in a small way.

After the blood was all drawn, they began circulating saline solution and the stingy pain went away for the most part, and the remainder of the procedures was pain free all the way until the end.

 

Pre-Chemo Drugs

Next, the nurse administered two sets of “Pre-Chemo” drugs. Each was via IV drip and each took about 20 minutes from start to finish.

The first pre-chemo drug was an anti-nausea medication that will stay in my system for about 48 hours. I am really rooting for this one to be effecting, because I hate being nauseas! Not that anyone likes it.

The second pre-chemo drug was a steroids concoction. I assume this is to fight off fatigue and other possible side effects.

They also gave me two Tylenol tablets. I have been a serial Tylenol abuser my entire life; I couldn’t remember the last time I had taken less than four. But, I kept my mouth shut about that.

After these were complete, it was on to the actual task of killing cancer with ABVD.

 

ABVD

The big event! The cancer killing drugs! And also, the ones which may cause my the bad side effects and adversely affect my thick, full head of hair.

The first three drugs were all administered by the nurse injecting them into my IV using a syringe. Each took less than five minutes.

Find out what the letters mean in this previous blog post.

First up was the “A” drug. It’s the bright red one, and came in the largest syringe. This is the one which makes me pee red, and sure enough, as took a pee after the chemo was all over, and the toiler water was a bright pink! I’m really glad they warned me about that side effect; otherwise, I would have freaked out thinking I was urinating blood.

Next up was the “B” drug. I was a bit nervous about this one. Prior to the chemo starting, the head nurse asked my attending nurse if she was sure she game me Tylenol beforehand, because the last time someone forgot to give Tylenol the patient immediately spiked a 107 degree fever!! Of course, I’m thinking… this is NOT comforting!! Please tell these stories where I can’t hear them!  But for me, this was all no big deal – so far, no fever, no side effects. This drug was clear and only took a couple minutes.

The last syringe drug was the “V” drug. This looked just like the “B” drug, and since the administration was fast and uneventful, was all the same to me.

The final chemo drug was the “D” drug and this was administered via IV drip. It took 60 minutes from start to finish for this drug to go in. Again, it was pretty simple – all I had to do was sit there.

After they gave me the “D” they flushed me out with five minutes of saline drip and we were off!

 

Passing the Time

We were in the office for about five hours from start to finish – two hours longer than the original three hour estimate.  They said that future treatments would go faster – but I’m not really sure what they could speed up. There really wasn’t a lot of waiting time; they took us back fast and moved through the sequence just about as quickly as they could. So I’m predicting (at least for trying to schedule my work) that future treatments will probably take between 4-5 hours each.

Facebook Live – I started a FB Live video at the start of my fourth drug (the “D”). Mostly because that was the first time Luis and I were left alone in the room for an extended period. That was my first Live video, so I was mostly figuring it out and I hadn’t thought about a lot to say – so it was less than three minutes! But I know a lot of people are thinking about me today, so I wanted to give a real time update of my taking chemo like a champ and kicking cancer’s ass in progress! I wasn’t trying to depress anyone (I thought mid-stream that, hmm, this may come across as very depressing to folks). I might go again during the next appointment… I loved getting all the encouraging likes and comments during the video. 🙂

Luis and I played some Chess & Checkers throughout the process as well.  Luis is just learning both games, so it wasn’t really a fair fight. I wish he liked playing Chess as much as I do! Maybe he’ll warm up to it during treatment.

We also received an unexpected care package. Apparently, Simpsonville Baptist Church puts together care packages for cancer patients. The packages include some flavored candy (chemo can leave a bad taste in your mouth, although I did not experience this), crossword puzzle, herbal tea (anti-nausea recipe) and hand sanitizer. I think it’s just delightful that they do this – that there’s a group of thoughtful, selfless folks out there that think of things to make life easier for people they don’t know – and that they add people like me to their regular prayer list. I find it all very inspiring!

 

At Home

Now at home, and its 9:15pm and I’m not feeling any negative side effects, I don’t think. I’m a little tired and I have some indigestion – but it’s been an emotional day, and I also chose to eat Qdoba’s 3-cheese nachos for dinner after chemo. That meal frequently gives me indigestion anyway, so I’m not sure I can blame my current tummy issues on the chemo. Next time, I’ll pick a more appropriate meal!

Luis has to run off to a work thing after my treatment, so Mom & Ashley came over and sat with me for a few hours. They gave the bathrooms and kitchen a good deep clean and also brought over some Lysol, a weekly pill-box to keep track of my medicines, and a bunch of tooth brushes & cases. Mom said I should change my tooth brush every week. Probably a good idea to go ahead and start tonight; I am not quite sure the last time I changed my toothbrush. Embarrassed.

We also played Jenga, Chess & Checkers. I was the loser at Jenga, tied at Checkers, and won a tough game of Chess with Ashley. I have to mention that playing Jenga with Mom is quite a sight! She just cannot take the anxiety that comes with knowing the tower may fall at any time. I thought she was going to pass out a couple times, and she did have to leave the room at least once!! Hahahaah.  One thing I really have enjoyed during this ordeal is playing games with family.

I have three prescription anti-nausea medications at the ready. There’s one that I big taking tomorrow preventatively, no matter how I feel. Then then I also have two others which I can take if I am feeling nauseas. One of those two is the same that they pumped me with today, so I can’t use that until Day 3. One is Phenergan and the other is Zofran; I can’t remember top of head which is which, but I have a helpful sheet.  Hopefully, I won’t have to use them because I’ll be feeling great!

 

Next Appointments

Barring any setbacks, my next appointment is my next chemo session. They’ve scheduled my next two:

Tuesday, January 24 @ 9:30am – I took the morning slot, hoping that I can do a bit more work on the day… Even if it takes 5 hours again, I can get knock out a couple hours of morning work and do some afternoon/evening work as well. Most of my colleagues are west coast, so working into the evening can still be very productive for me.

Tuesday, February 7 @ 10:30am – Odd time slot in the middle of the day, but this treatment includes a consultation with Dr. Stevens, so this was the time they had available. The consult shouldn’t take longer than just a few minutes, and chemo starts immediately after. This is also my sister Ashley’s birthday – happy birthday, Ashley! The party is in the chemo room.

 

Thank you!

Thanks again to EVERYONE who makes a point to reach out to me so often. It never gets old, and it really does help keep me strong knowing that there are so many people that care! I loved the likes and support on the very short Facebook Live video, which can still be found on my Facebook.  I love all the texts I got last night and this morning, and the calls, the emails, the Get Well cards.

I love you all so very much and really am thankful to have you supporting Luis and I through this!

I’ll update again tomorrow – hopefully to let everyone know that I’m still feeling 100.

 

Much Love,

Merv

Luis and I are both big believers in prayer – and we’ve never needed prayers as much as we do now facing our fight with cancer.

We’re so lucky to have so many loved ones – and loved ones of loved ones – keeping us both in their prayers!

 

Prayer Blanket

I wanted to share with everyone something that my mom made for me. It’s a Prayer Blanket. It includes a stitched in section of my Grandma Paulin, who beat breast cancer back in 1970.

My grandma was a strong woman to beat breast cancer. 1970 was a time when cancer just wasn’t very beatable.  When she was diagnosed, her first question was “How long do I have to live?” But her doctors thought she could beat it, and she did. Years of chemotherapy & additional surgeries, but she beat it.

It’s nice to know that I have her genes. The genes of someone who fought and beat cancer. That I come from a family that fights and beats cancer.

Additionally, my dad took this blanket to St. Albert the Great – my old grade school & parish – and had the blanket blessed by the pastor with holy water.

Thank you to both of my parents for all of your love and support!

 

Prayer Map

Everyone in my family and countless friends and colleagues have been praying for weeks, and soliciting prayers on my behalf. I’m on so many prayer lists – it’s simply overwhelming.

Luis, along with several members of my family, are keeping track of where we have prayers coming from. We’d love to get prayers from all 50 states!

We’re off to a good start. Be sure to check out the new Prayer Map page we’ve started. If we’ve inadvertently left out your state, please let us know! And if you have friends or family saying prayers for us in a state that’s not yet recognized, please leave a comment either here on the blog or on my Facebook page!

VIEW THE FULL PRAYER MAP PAGE.

 

Lazy Weekend

Luis and I had a pretty lazy weekend. That’s always our favorite kind, but I am especially thankful for it now as a means to just clear my head and prepare for the week ahead.

On Friday, we had our “First Friday” lunch. That’s a monthly BetAmerica-sponsored lunch. In San Francisco, the whole team goes out for a nice lunch; remote employees like me join in by having a BetAmerica sponsored meal on the day. Usually, I end up at Chipotle. This month, we went out for my ‘last’ Sushi meal. My oncologist has forbidden me to eat sushi during treatment due to the pathogens that may be present on raw fish. That makes sense of me, but Michelle says that it should be fine. Convincingly, she asked if I thought if everyone in Japan with cancer refrains from sushi. Hmm…

We’ve watched a lot of I Love Lucy this weekend. We’re watching on Amazon Prime, which has a “Best Of” series – so not every episode. Somehow, they’ve left off the classic Harpo Marx episode! I’ll need to find that for download somewhere.

We went out for lunch with my parents to BoomBozz. It’s only a couple blocks from our house, so it’s a short walk… but in 15 degree weather, it felt like forever!

My parents have also volunteered to do our laundry for us during the months of treatment, from pick up to drop off. Takes me back to my college days! We’re thankful for every bit of help we can get – even something as simple as a household chore being taken off our plate.

Today, we went over to play a game of Monopoly at my parents’ house. They had their first fire of the year burning in the fireplace, and cooked a big pot of chili.  It all made for a fun, care free afternoon. Despite the huge advantage of being the banker, I was the first player to declare bankruptcy; Luis claimed the victory on the strength of his Boardwalk-Park Place monopoly and Hotels.

 

THANK YOU!

I know I do this on almost every blog post, but I just want to thank everyone for reaching out and offering prayers, good thoughts and support.

It doesn’t get old, so I won’t stop thanking you!

Every time I post a blog update or a Facebook update – it’s two-fold. I like to keep people updated on how I’m doing because I have a lot of people caring about me and wanting to know what’s happening. But I’m also greedy for additional prayers and good thoughts every day!

The love and support has been overwhelming, in the best possible way. I’ll walk into chemo on Tuesday knowing that I have an incredible support system and hundreds of loved one praying for me and holding me in their thoughts.

I am so sorry that I’ve not been able to respond to everyone individually. I read every comment, every text. They all motivate me, keep me strong.

Thank you for all of the Get Well Cards, the phone calls, the Facebook comments, the emails, the text messages. I’ve received financial support, care packages and baked goods. I’m thankful that BetAmerica has been so flexible with my schedule, as I’ve needed to attend dozens of medical appointments over the past two weeks.

And I won’t ever get tired of saying THANK YOU for being there for us when we needed it.

 

Much love,

Merv

I had a busy and eventful day today with three appointments. It didn’t help that I didn’t sleep a wink last night, or that the roads were not great at 7:30am. But the biggest news has nothing to do with any of those appointments:

 

START OF CHEMO

Chemo begins on Tuesday of next week at 1pm.

I am so relieved to finally have a start date for chemo. The diagnosis process takes forever with all the tests and waiting… The waiting has definitely been the hardest part of this process. I am ready to start killing cancer!!

I am nervous and a bit scared about how chemo will affect me. But I know that the drugs have come such a long way, and it’s possible I will only have very muted side effects… at least that is what I am hoping for!

 

DENTIST

Another doctor for me: Dr. Wagner. Thank you to my family for getting me in to see him so quickly!

I got started early this morning with an 8am appointment. This was just a consult where they established me as a new patient and took some X-rays.  After that, they came up with a plan for what needed to be treated or cleaned.

There’s obviously urgency here, as I cannot go to the dentist during chemo. So I was pretty dismayed when the scheduler said the first they could get me scheduled for was February 1.

However, they have been REALLY accommodating at Dr. Wagner’s office and were able to get me in again today at 3:30pm to do the most urgent cleaning – deep scaling the right side of my mouth. They did numb my right side, but I am not going to lie – it was a very painful cleaning! Glad it’s over and not looking forward to the left side.

I’m hoping to get in on Monday for the left side, although I won’t have a set time until they call me on Monday. They’re confident of getting me in. It’s our only shot!

Apparently chemo is hell on your mouth. So hopefully I’m going to start treatment with some fresh gums and excellent mouth health!

 

FERTILITY CLINIC

I made my last trip to the fertility clinic today to unload my last sample and also get the FDA required blood test. I took a picture of the building to share on here because I wanted to show that the Sperm Bank looks like an actual bank! It’s wedged in there, but it’s like a bank! I feel like I can trust them with my sperm.

Of course the first question that came my way from the Front Office Coordinator (Angie) was one which I should have expected but didn’t properly prepare for: Which would you like to do first? Sample or Blood?

It was a tough choice, but I decided to go with the sample before the blood test.

Having done this process before, I completed the task a bit quicker than last time. So when I went back out to the front desk, I get a “Done Already?” DAMN IT! Maybe I should have thought a bit about what the best amount of time spent in the room would be… Not too hasty, but not freakishly long? … Oh well.

Also, is it weird that I got a little emotional leaving the sample cup on the tray in the room?  I mean, those may be the last living sperms I ever… do.

(Okay okay. Maybe not the very last. But it was still a nostalgic moment!)

RESULTS: The office called with my sample results just an hour or so later. I was much spermier this time! On Tuesday, I produced 14 million swimmers.  Today, I produced 126 million!! I’m pretty proud of myself for this accomplishment.

We now have four vials of frozen semen, which means four chances at future insemination.  And of course, we’re still rooting for me to emerge from this whole treatment still fertile.

Blood test was a piece of cake. My arms are looking terrible. I hope they heal up before Tuesday. They are both extremely bruised from all the needles and have so much scabby puncture holes.

 

SLEEPING

Didn’t sleep a wink last night and I was extra annoying to Luis for the entire evening. I plan to knock myself out with some Benedryl tonight. That reliable gets me to fall asleep; it just hasn’t been reliable to keep me asleep. I’ve been waking at, like, 2am or 3am and not able to fall back asleep.

 

I LOVE LUCY

Luis and I are watching I Love Lucy in the evenings. It’s been so many years since I watched all these episodes, most of them are like new to me again. And Luis has never seen any of them. I enjoy watching Luis watch it for the first time almost as much as I enjoy the show itself.

I had forgotten just how funny it is. It really helps take my mind off all the seriousness that’s been happening the past few weeks, and allows me to spend a couple hours every evening just laughing at Lucy’s shenanigans.

In fact, that is what I am going to do right after I post this blog update!

 

UPCOMING APPOINTMENTS:

Friday @ 8:45am – Meet with Dr. DeWees (my surgeon) to evaluate the healing of my surgery from two weeks ago. Seems to be going fine.

Monday TBD – Final dentist visit.

Tuesday @ 1pm – Chemo Treatment #1