My fourth chemo treatment yesterday marks the half way point in my proposed treatment plan.  All things going well, I should not need more than eight such treatments – and possibly as few as six if my next PET Scan (in just over 4 weeks from now) comes back pristine.

I had a great ‘off’ week last week, but first I’ll recap Treatment #4.  This is a long update!

TREATMENT #4

We got an early start for this week’s treatment, arriving at the office around 9am and getting taken back to a room almost immediately. An early start is by far my preference, because I can make it back to work around 1pm – only shortly after most of my west coast colleagues arrive in the office.

I came into this treatment in much better shape than last time.  If you remember, for Treatment #3 I had been dealing with blood clots, a bad port surgery, slicing off a piece of thumb, and a sore throat – and for those things I was taking Aspirin, Vicodin and Antibiotics in addition to my normal heartburn pills and stool softeners.  This week, I was all healed up and only taking the heartburn pills – and was feeling excellent.

The actual treatment was incredibly smooth, as it always seems to be with this Port. I wish I had gotten the port prior to any treatments because it really makes for a much more pleasant experience.  Absolutely no pain during blood draws or injections. I’m still a bit sad that it has to stay in for a year, but I think that’s a small price to pay for more comfortable treatments and eliminating any chance of messing up my arm veins for the rest of my life (which does happen to some people who forego the port).

I was disappointed to learn that my White Blood Cells have dropped once again.  I was hoping that after they had gone 3+ last time, that I was on the upswing.  However, my nurse Dolonia said they are more likely to simply hover around the 2-3 range for the duration of treatment, and likely won’t see a permanent bounce back until treatment as concluded.

Here’s a chart of my WBC count.  Remember that January 10 was my first treatment, so you can see what effect that had on my counts.

That all being said, I am not really back on house arrest as I was the first time.  I am still permitted to go out to dinner, or the grocery, or friends/family houses. I just am not to be in hugely crowded areas (no dance clubs!) or around sick people, elderly people or kids.  So that’s not so bad.

It also must be noted that I defeated Luis soundly in both 500 Rummy and Words With Friends!

FEELING BETTER THAN LAST TIME

I would say that I’m not feeling quite as good as I was after the first two treatments, but I am definitely feeling a lot better on this go-around than I did last time.

I was feeling pretty decent yesterday after treatment all the way until bed time; I turned in sometime around 9:30pm, which is later than a normal day but also I am always hopped up on steroids on treatment day and sometimes don’t get to sleep until Midnight.  I just popped a Restoril and was out no later than 10pm.

Today hasn’t been all that bad either.  I woke up at 5am and couldn’t get back to sleep, but that’s not at all uncommon.  Around 7:30 I just decided to get up and start my day, so I got to work around 8am and just worked through until about 6:30… and actually, I am still on Slack and Email while I write this post.  So, I would say full day today.  I’m keeping fairly busy these days – have been working on a couple new projects the past two weeks which have taken a lot of time, in addition to normal duties. I prefer to stay busy rather than not!

Only just the last couple hours have I been going downhill a bit – experiencing very mild nausea and a slight loss in energy.  But the latter could be attributed to waking up at 5am.

I had a juice from the juicer for breakfast (Thanks, Luis!) and was actually feeling well enough to have a proper sandwich for lunch.  Solid food a day after treatment usually isn’t on the agenda!  So I was happy to get and keep that down.  I don’t quite yet know what I’m going to be up for in terms of dinner.

If I stay just like this for the next couple days before feeling better, I would consider this round of treatment to be a massive success!

And also, I had a good poop today.  That NEVER happens the day after treatment!

GOOD “OFF WEEK” RECAP

I finally turned the corner of starting to feel better last Sunday, and I quickly started to feel very well!  I would even say I felt excellent from Monday on through yesterday’s treatment.  The best I had felt in a long time.

And I took full advantage of it!

Tuesday – Our 3^rd wedding anniversary!  It’s been three years since we got legally married in Oakland, CA. I was living in the bay area at the time – but also, it wasn’t yet legal to get married in Kentucky!  Hard to believe, right?

Anyways, I got breakfast in bed as Luis fixed my some heart shaped pancakes – just like he did for me on our very first Valentine’s Day back in 2012!  Such a sweet husband I have.  Luis got some yellow roses and white chocolate truffles.

In the evening we went out to one of our favorite restaurants in Louisville – Vietnan Kitchen!  I got my usual K8 which is a bit spicy – and I found out that my newly shaved head doesn’t do well with spicy foods!  Spicy head sweating with a shaved head in public is not a sexy look!

Wednesday – My birthday!  31 and officially into my “30’s” now… Moving on.

Martha stopped by early in the day with a big delicious chocolate cake that Jerry made.  Sadly, I was on a conference call during her visit and didn’t get a chance to see her.  But the cake was OH MY GOODNESS good! Chocolate brownie cake – so moist and delicious!

Shelby came over late in the afternoon and we had a good chance to catch up.  She went down to Arkansas shortly after I moved back to Kentucky, so it’s been a good long while since we’ve had some quality 1×1 time.  I soundly defeated her at her own game “Phase 10.”

Later, we met Jill and her friend Graham up at Ramsi’s for a birthday dinner – Jill’s treat! I surprised everyone by getting the Shrimp Tortellini (my usual).  It had been a while since spending time with Jill too, so I really enjoyed the day of reconnecting with my best friends!  We finished off the evening at Jill’s place eating some of Jerry’s delicious chocolate cake we brought over for dessert. Yum!

Friday – My cousin Nicki and her husband Jeff treated us to dinner at Seviche!  That’s our favorite restaurant and the place where Luis and I first met over five years ago. We both had a tremendous time with Nicki and Jeff.  It’s been a really long time since I’ve gotten to spend good quality time with Nicki.  We got a chance to reconnect as adults, swapping some fun traveling stories, talking about our new house and their new renovations, and even cautiously toed the line with some political talk (we both come from politically divided marriages). I’m really looking forward to our next dinner double date!

We started with some Guacamole and Brie.  The Guacamole was sat right in front of me so I dove into that immediately.  I only just got into the Brie when it was nearly gone and WOW was it good!  For dinner, Jeff and I both got my favorite meal – Churrascos de Argentina!  It’s an excellently prepared medium skirt steak with mashed potatoes and a dreamy chimichurri sauce. Luis got the Wild Mushroom Enchiladas and Nicki got the Mahi Mahi Tacos.  Everything was so delicious.

Saturday – We got up and made our favorite breakfast, Huevos Rancheros!  It’s about the first time I’ve been feeling risky enough to eat what sometimes can be an acid reflux trigger… well, the first time since two weeks ago when I started making it and promptly cut off a piece of thumb!

What goes into our Huevos Rancheros?  The centerpiece is Poached Eggs – on top of seasoned sautéed veggies (red & green bell peppers with onions and garlic).  This all sits on a bed of crispy corn tortillas covered in melted cheese and seasoned black beans.  And it’s all topped with fresh Pico de Gallo (freshly diced tomatoes, onions and chopped cilantro mixed with fresh squeezed lime).  With a side of freshly made guacamole!  It’s a lot of work but so worth it.

Honestly though, the biggest struggle was going to Kroger beforehand to get the ingredients…  I walked in straight to the produce section, and all of the fire alarms are going FULL BLAST.  And I mean to tell you, they are so loud it makes your head ring!  But EVERYONE was just going about their normal shopping without a peep.  I mean, the deli is straight up flooding with multiple fire extinguishers going full blast and lights flashing everywhere – but I’m just over here bagging up my bell peppers; I’m not passing up RED bell peppers when they are 10 for $10!!

Afterwards, the weather was so nice we took Marco for a really long walk through Cherokee Park.  It’s about a 15 minute walk to Cherokee Park from our house.  We went to the dog hill and let Marco do a lot of running before we put him back on the leash and did a full loop around the park.  We took Bonnycastle all the way back, passing the slightly ‘nicer’ part of the same street on which we live – the part closer to the big park.  And we got home just in time, because one we hit our block, it started to rain.

Sunday – My parents hosted the Huber Family over for a co-birthday celebration for me and Ashley.  Mom prepared a LOT of food, and I ended up taking home a LOT of leftovers!  Meatloaf, Asparagus Casserole, Green Bean Casserole, Fresh Mashed Potatoes, Chicken Noodle Casserole, Corn – and a delicious Cinna-Melt concoction we got off Facebook!  Also, Jerry brought over some mini pies – Chocolate, Butterscotch, and Coconut.  I have samples of just about everything in the fridge!

My owl collection continues to grow as I got a decorative owl set for the TV room and a sturdy owl coat hanger.  Ashley also got me a new chess set made entirely of Mario characters – pretty hilarious and now on display in my TV room, and I will play anyone who wants to play!

I always enjoy spending time with the whole family.  Such a tremendous benefit to having moved back to Louisville!

Monday – Jeremy & Johnny hosted us for a Chemo Eve dinner at their place.  We had spaghetti, pizza & garlic bread for a very Italian spread while watching Jeopardy – and it should be noted, I got more answers than everyone; anyone sensing a theme with me and competitiveness?

Then we got to play on the Virtual Reality set they have hooked up to their Playstation.  The first game was a deep sea dive where at the end you get attacked by a huge shark.  The second was as an Eagle that you control which flies around Paris – including to the top of the Eiffel Tower!

So all in all, I think it’s safe to say that I maximized my “off” week and got out of the house as much as possible!  After being caged up and feeling crappy for so long, it was nice to be feeling good and allowed to venture out for the first time in weeks.  Thanks so much to all the friends and family who filled each day with such love and fun times! 🙂

BONE MARROW DRIVE

This is really important to me!  Luis and I are attending a Bone Marrow Registry Drive at St. Agnes Church (1920 Newburg Rd) on Saturday, February 25, to join the Bone Marrow Registry.

IF YOU ARE FREE, WE WOULD LOVE FOR YOU TO JOIN US!

We’re going at 1pm. But the drive is open from 10am to 2pm if you aren’t able to make it right at 1pm.

There is an urgency: Louisville resident Rebecca Weis is fighting a rare blood cancer called BPDCN and a bone marrow transplant is necessary.

But this is also very personal. As you know, I am fighting blood cancer myself. My prognosis remains excellent, and we’re very hopeful that the chemotherapy will cure my Hodgkin’s Lymphoma. But when chemo fails, bone marrow transplant is often the next line of treatment for lymphoma.

You must be between ages of 18-44.

Not able to make it this Saturday or not eligible to donate? You can still do two things right now:

1) Tell your friends about this event and encourage them to attend this Saturday.

2) Visit BeTheMatch.org and find out how to join the Bone Marrow Registry at a different time, or how else to help if ineligible to donate.

Please contact me if you have any questions! My cell phone number is 502-693-1234.

CARDS & CARE PACKAGES

Thanks again for the cards and care packages that continue to come in each and every week!  Since my last update, I’ve gotten a gift card to Massage Envy, a brand new DVD copy of “Beautician & the Beast”, hand scrub & lotion, and a card which says a donation was made in my honor to the American Cancer Society.

What truly amazing friends I have that know me so well and continue to care, care, care and keep caring during this long journey!  I love you all more than I could ever express!!!

I love everyone reading this so much!  So much love to everyone!

-Merv

There’s no way to sugar coat this. My reaction to the third chemo treatment is not going as smoothly as the first two. It has me worried that some of these things I’ve read about chemo side-effects compounding throughout the full course of treatment may be true.

Here’s an update on how things are going after Treatment #3 (of 8).

 

SIDE EFFECTS

NAUSEA – The nausea I’ve mercifully been able to avoid thus far has come on in a big way. To be fair, I’ve not actually vomited (outside of my mouth) yet, but I’m generally feeling mid-grade nauseous throughout each day so far.

This nausea actually set in on Tuesday evening, the very same day of my chemo treatment.  That was especially alarming, since after prior treatments I generally felt 100% fine the first couple days after treatment, and only on days 3-6 would I feel a little mild fatigue.  To have been experiencing such rapid, previously unfelt side effects was worrying.

Now Thursday, I’m still feeling nauseous – and I’m quite anxious for this feeling to go away, as I really don’t like it!  Yesterday, I wasn’t actually able to make it to my computer for work until about 10am as I laid in bed making sure I wasn’t going to puke; I usually aim to start my day between 8-830am.

It would be unfair to say my appetite has gone away, because I’m still hungry throughout the day. But I’m so fearful about what I eat; I don’t want to trigger anything. So my menu the last few days has been crackers, toast, rice, cereal and juices.

Anyways, this side effect is really bumming me out. I hate to sound like a whiner but I’m really hoping this isn’t going to be a recurrent issue.

FATIGUE – This is getting to me in the evenings, most of all. I don’t find it challenging to power through my work day, but I would say by 8pm, I’m just beat. It’s rare that I stay awake past 9pm any longer on a work night.  But this could also be a consequence of the low quality sleep I’ve been getting.  It’s pretty frequent for me to fall asleep by 9pm, wake up at 1am, stay awake until 5am, get back to sleep, then alarms start going off at 7:30am.  Just not getting enough sleep, and once it’s daylight, I just can’t get back to sleep. I’ve always been a terrible napper.

I’ve gotten a prescription sleep aid (Restoril) but that really only helps people ‘fall’ asleep, as opposed to ‘stay’ asleep – which is really my problem. By the time I go up to bed, I’m sometimes so tired that I don’t even remember going to bed at all. But last night I actually did make it through the night sleeping – too bad I had a 7:30am doctor’s appointment with the wound specialist for my thumb.

CONSTIPATION – It looks like this is going to be a constant post-chemo issue. I won’t bore you with the details.

 

PORT UPDATE

The extreme pain that came with the surgical implant of my port has almost completely gone away. It’s only mildly bruised now, and I would have to really try to aggravate the region to impose pain – so that’s pretty easy to avoid. And I’ve managed to stow away 8 of the 16 pain pills they gave me for when it comes out… which brings me to my next topic…

The rest of this isn’t much of an update, per se, more of just something I didn’t realize or think about until I was told about it by the nurse at Chemo on Tuesday.

I guess I just erroneously assumed that I would get my port taken out shortly after treatment was over.  But that’s not the case.

Generally, they suggest that cancer patients keep the port in for at least 6 months following treatment. And some of the things I’m reading online can recommend it be a lot longer, closer to a year.

The reason given by the nurse is that there’s a lot of follow up visits for which it makes sense to draw blood from the port during that time.  But it wasn’t too terribly difficult to read between the lines and realize the obvious: it’s kept in place in case of recurrence. Scary thought, but it makes sense.

I guess it doesn’t really bother me too badly to keep it in, especially since it really does make the most sense to keep it in considering the risk of recurrence (something I simply try to put out of my head).  I suppose the biggest daily inconvenience is that I prefer to sleep on my stomach, and this port makes that impossible.

 

THUMB UPDATE

I had an appointment with a wound specialist this morning to go over my thumb. Honestly, I feel like seeing a wound specialist is a bit overkill for what appears to be a perfectly healing thumb… but what the hell, I’ve met my health insurance deductible for the year so it’s free so why not just be extra secure.

Basically, they said it’s healing well. It’s very red and pink, which they say is good.  They’ve given me a stronger topical cream than Neosporin to put on it, as well as a lot of special wraps (which unlike the Kroger brand are vibrant fun colors – I got hot pink, cerulean and lime green!).  Since I’m still advised not to leave the house without a mask, only my colleagues at BetAmerica get to enjoy these sexy colors on video conference. But I’ll give you a glance.

It’s pretty annoying not having full faculty of my left thumb.  Simple tasks like buttoning my shirt or tying my shoes are suddenly really complicated tasks in need of careful concentration. I’m anxiously awaiting the full return of left thumb.

 

THE PILL SITUATION

So, I’m not sure exactly when this got so out of hand, but I am very thankful this week for the daily pill boxes my mom got for me before I started treatment.  And these aren’t just any pill boxes – there are three separate compartments for times of day each day – all of which are now used, and I could honestly use a fourth compartment per day!

Here’s what I’m now taking on the daily:

Pepcid – Heartburn prevention pill

Antibiotics – Four daily (for the thumb – next 10 days)

Aspirin – Blood thinner for blood clots in right arm

Stool softener – Three daily, as needed

Steroids – For the first few days after each chemo

Restoril – Sleep Aid

And that doesn’t include the mouthwash for the mouth sores, the milk of magnesia (when things get desperate), the infrequent Gas-X, or the topical lotion for my poor thumb.

It takes a LOT of medicine to get me through the day all of the sudden.  I mean, check this out:

 

 

That’s all for now. Hoping to turn the corner on this sicky feeling and get back to being the happy chemo warrior.

Much love!

-Merv

 

 

Well, it was a tough weekend, but I’m feeling better now, one day before Chemo Treatment #3!  I just wanted to get a short update out to let everyone know that I’m feeling better!

 

PORT PLACEMENT UPDATE

With the benefit of some pain medicine, I made it through Saturday without much issue. I was still in some decent pain throughout the day, but the medicine made it manageable.  Luis and I spent the day just lying on the futon, and I tried not to move very much.

But Sunday, I was starting to feel much less pain even without the pain medicine. I did take one pill in the morning before I got up the courage to hop in the shower (my first since Friday’s surgery!) where I needed to scrub some of the surgical orange gunk off my shoulder and torso. The whole thing was pretty painless.

Now Monday, I haven’t needed any pain pills, and figure I will probably hold onto that bottle until I have surgery to remove the port!

 

SLICING MY THUMB

But Sunday wasn’t uneventful, nor without a trip to the hospital… However, this one was 100% chalked up to my own carelessness.

Slicing some onions for our morning breakfast, I took a big piece off the tip of my thumb.  And by that, I mean a solid layer of skin and whatever is under the skin came completely right off.

Tons of blood rushing out. Can’t get it to stop. Didn’t take me too long to realize that this was going to be a huge infection risk and I better get down to the immediate care center.

It did take a couple hours to be seen, but we told them right at the beginning that I was undergoing chemo. So they took us back to a private room almost right away, to get me away from all the sick people in the waiting room.

The doctor looked at it and said that no stitches are needed and that the chopped off area will grow back on its own, although it will take a long time. I just have to redress the wound a couple times a day – which was extremely painful to do for the first time this morning, but far less painful when I did it this evening.

 

TOMORROW’S CHEMO & CONSULT

Tomorrow is Chemo Treatment #3 and the first such treatment that will be administered through my Port. We have a numbing create that we will administer to the area at the house prior to going to Norton’s which should make the initial stick not hurt. I have to admit, I am looking forward to not having to get my arms poked this time!

We also have a consult with Dr. Stevens. This will be our first one-on-one consult since we began treatment about a month ago. I am not exactly sure what to expect from the consult, as it won’t really be a progress update since we have no new information.

Prior to treatment, they will test my White Blood Cell counts. We’re hoping for a rebound.

 

I’ll update everyone on how everything goes tomorrow!

Much Love,

Merv

Yesterday I had my Port surgically implanted.  Everything went very smooth early in the day, but we hit troubled waters by midday which descended into an evening of pain and misery. Luckily, we seem to have weathered the storm and are back to kicking cancer’s ass.

I know that every cancer journey includes days of pain and suffering. I consider myself very lucky to have had fewer of those bad days than most. But I think a lot of today’s misery could have been avoided.

 

SURGERY

We went into Norton’s early yesterday morning with a 7:30am call time for our 9am surgery.  As usual, they took us back shortly after arrival.

Our nurse who prepped me for surgery was extremely nice and very helpful in explaining the procedure and what to expect. I wasn’t in the waiting area for very long before they wheeled me back to the operating room.

Unlike my biopsy where I had met Dr. DeWeese previously and he consulted with my family, I never met yesterday’s surgeon until I was actually lying on the operating table. He seemed very nice and showed me a sample Port of the type he would place inside of me, and explained the procedure in great detail.  He also told me that unlike my previous surgery, I would NOT be totally knocked out, but would be in “La-La Land” – which I found somewhat scary at the time.

I shouldn’t have been scared though. Because almost as soon as they told me they were starting the drugs, I don’t remember a single thing after that. So for me, La La Land meant falling fast asleep and not waking up until I was back around Luis.  The surgeon told me he sometimes has patients awake and talking to him throughout the whole surgery! That was not me. ZZZZzzzzz….

Luis got a chance to see me woozy and out of it. Unfortunately for him, if he was hoping to hear something embarrassing, he did not (to my knowledge) get to indulge.  Instead, I woke up asking about how my work stuff was going and trying to get him to logon to BetAmerica and check the contest lobby for me. I think this says something pretty disturbing about me, actually.

Shortly thereafter, I got dressed and they released us, without the benefit of any pain medication.

 

AT HOME

We drove home and ate some lunch. I was starving since I hadn’t been able to eat any breakfast before surgery. I was still woozy from the drugs, so I was feeling no pain. And then, I fell fast asleep for several hours.

I woke up around 4pm in a MASSIVE amount of pain.  I don’t even know how to describe how badly I hurt at the site of surgery other than to say it felt like I was completely on fire.  I’ve had many different types of aches and pains throughout this now 2-month cancer journey, but nothing prepared me for this type of pain.

Not wanting to be a complete wuss, I took a couple Tylenol 500mg tablets, hoping this would take some edge off.  No luck – it didn’t even touch it.

I started making phone calls looking for some proper pain medicine. I called my general practitioner, but the office was already closed. I called Dr. Stevens’ office. They said it’s not their ‘policy’ to give pain medicine for Port placement surgery.

I took a short meeting for work around 5pm and then headed straight to the Emergency Room.

 

EMERGENCY ROOM

So what happens when you send a cancer patient to surgery and don’t offer proper pain medicine?  In this situation, that cancer patient who has a severely low White Blood Cell count ends up spending 5 HOURS in the Emergency Room dealing with pain management.

The most frustrating and frightening part of the ordeal was having to sit in the Waiting Room of the ER for over 2 hours waiting to be seen.  I am under direct orders from my oncologist to not leave the house even to go to the grocery store because I am so susceptible to getting an infection.  And yet their “No Pain Meds for Port Placement” policy forces me to possibly the most infectious place I can possible imagine.

I took a facemask and tried to sit as far away from the sea of sick people as I possible could, over in the pediatric waiting area. I was nearly ready to give up on Norton completely and take my chances finding pain pills west of 9^th Street when they finally called us back.

We spent about an hour in the room being monitored before they finally – mercifully – gave me a pain pill.  It almost immediately took some of the edge off. Still pain, but at least I could watch Ninja Warrior on the TV and not feel like I was being repeatedly stabbed with a hot knife.

What we were told is that normally, people don’t experience my level of pain with port placement.  However, after they spoke with my surgeon, they learned that because I am so skinny, they had to stretch my skin much more than is typical, which led to the much more severe recuperation pain.

Luis and I left with a prescription for some pain meds to get me through the next couple days. I took a couple pills when I got home, which helped a GREAT deal, and went to sleep shortly thereafter around Midnight.

 

CLOSING THOUGHTS

And then I woke up at 4am, which is kind of usual as chemo wrecks my sleep schedule. Lots of pain again, but took another pill and feeling a bit better.

Frankly, I am disappointed in my entire medical team today – especially Dr. Stevens’ office and their policy of no pain meds for port placement.

The simple fact is that I should have been prescribed proper pain medicine after surgery once they realized they had to take extraordinary measures during the procedure which they knew would lead to pain more extreme than is normal. But especially when I asked for it later in the day from Dr. Stevens’ office, I should have gotten it.

Instead, I had to put myself at severe risk by sitting in an infectious Emergency Room for hours trying to deal with pain control. I hope to God that I didn’t pick anything up there which will delay my treatment. I fear Dr. Stevens’ policy puts other patients like me at the same risk, which I think is pretty scary and totally unnecessary.

 

That’s all for now. My next Chemo appointment is this coming Tuesday.  I also have my first consultation with Dr. Stevens since treatment began last month, so hopefully I’ll get some type of progress update. I should also get my next couple chemo treatments scheduled. I’ll also get a new White Blood Cell count on Tuesday. Hoping for a rebound.
Much love,

Merv

First of all, I want to apologize for not putting up a blog post for 10 days… I know there are so many people following my progress on here, and I’m sorry to have not provided an update. I do appreciate everyone who has reached out asking about me this week, though!

The truth is, everything has mostly been fine. In terms of side effects, all the normal ones were much milder this time around – except for a brand new one which has thrown a major kink into things, and ultimately has me going into surgery tomorrow…

 

ARM PAIN

As I mentioned on my last blog post on the day of Chemo, everything went well on the day of treatment. Everything continued to go well for several days after.  But then my arm started to hurt.

On my first chemo, they used my left arm. On this second treatment, they used my right arm – also my dominant arm.

It was about Friday, maybe Saturday, when it started to hurt. It was a very mild, bruise like pain at first. But it gradually worsened as the days went by. By Tuesday, I could no longer fully extend my arm.  Tuesday was also the first day I reached out to Dr. Stevens’ office about the pain.  They said to just watch it an try hot compresses.

By Wednesday, the pain was sever enough to that I could no long where shirts with sleeves. It was painful to the touch and throbbing for most of the day. Even typing irritated it – which sucks, because I type all day for work. This also contributed to not wanting to do a blog this week.

Today, I called the doctor first thing and they asked me to come into the office, which I did this afternoon.

 

PORT SURGERY

At Norton’s, they discovered I have a minor blood clot which is causing my severe discomfort. Normally, they would prescribe a blood thinner to handle the situation. However, since this has happened, they no longer want to use my arms for Chemo.

They want to insert a Port.

Since my next chemo treatment is coming up this next Tuesday, this means they needed to get me into surgery quickly. And my quickly, I mean tomorrow morning at 9am!  They really don’t mess around in Dr. Stevens’ office!!

A port is a small device surgically implanted just under the skin and which attaches to the veins. My next six chemo treatments will utilize the port to deliver the drugs, rather than my arms.

How do I feel about this?  Well, to be honest, I really didn’t want to have another surgery. And now, I’ll have two (one to put it in, one to take it out).  I had a good cry at the hospital today while I was waiting for my Doppler test. But I’m mostly okay with it now.  Ultimately, receiving chemo via Port will be much more pleasant than by IV. It’ll be more comfortable, and I for sure won’t have this arm pain anymore. And again – it’s not like I have a choice.

 

OTHER SIDE EFFECTS

I just wanted to quickly run through some side effects that I’ve had after Chemo #2 – or not had.

I should start by saying I still feel REALLY good!  Like, 100%!  I don’t feel sick or fatigued or anything.

Acid Reflux:  Ever since I’ve started taking a daily off-brand Pepcid pill, I’ve had basically no Acid Reflux.  I’ve had a little heartburn causing chest pain, but that was only bad for about one day.  This lack of acid reflux has enabled me to basically eat whatever I have wanted since about 2 days after chemo.

Mouth Pain: The pain has been minimal, almost no mouth pain. I did develop a huge ‘sack’ of something in my top left part of the mouth. Sorry, I know that’s disgusting, but it happened!  But it never ‘popped’ or became an open sore, so it never actually hurt.  I’ve been preventatively using my expensive mouthwash. It’s still there but it’s gotten a lot smaller.

Sleep: The steroids did give me a few sleepless nights after chemo. I’m beginning to think that will be a recurring theme.  And also, I think chemo just wrecks my sleep.  Luckily, I’ve been able to fall asleep fine in the evenings – but sleeping through the night just doesn’t happen for me anymore. More often than not, I’ll wake up between 2-4am and lay awake for hours at a time. Sometimes, I don’t get back to sleep. And sometimes, I just go ahead and get up and start my BetAmerica workday at 5am. At least I’m getting stuff done!

Fatigue: Complete non-issue. I do tend to go to bed much earlier, sometimes between 8-9pm, but that’s probably a consequence of not getting a full night’s sleep the night prior.

Nausea: I was a bit queasy for a couple days after chemo. But I never once thought I was going to actually throw up. I took Phenergan and Zofran for about 4 days and then stopped.

 

BLOOD CLOT

Back to the blood clot.  So the doctor doesn’t really think it’s too serious.  Normally, they would prescribe a blood thinner… but since I am having surgery tomorrow, they said not to do anything until after the operation is complete. Then, they simply recommended that I take Aspirin.

One silver lining of having surgery? I am expecting a full bottle of Vicodin!!  I don’t know whether my surgery site will be sore enough to need them, but damn my right arm really needs some good pain pills!!!! If anybody reading this wants to make a meaningful donation, my arm needs pain pills!!!

 

BALD

They say that most cancer patients begin to lose their hair after their second chemo treatment, and mine was right on schedule. I started pulling clumps of hair out on Friday morning.

So we had to just buzz it all off!  Who needs hair in the drain or on the pillow case?

I invited one of my very best friends, Karen, over to help us with my new hair-do! She’s one of the most fun people I know, and it was nice to make something that’s decidedly not fun into something that was actually very memorable.

Karen brought over some multicolored hair extensions, a few wigs, lots of bandanas, and a cowboy hat – all in case I didn’t like the bald look!

We went Facebook Live for the big moment, and shaved my entire head with dozens of people watching. Thanks for tuning in, if you saw the video!  We had a fun time.  Plus, I wanted everyone to see it there for the first time, instead of being surprised in person.  Merv, you’re a lot balder than the last time I saw you!

And I’m so glad Karen came over on just a few hours’ notice to help us!

My brother Gabe buzzed his hair off in solidarity with me! I was so moved by that gestured I nearly cried when I saw the photo on Facebook the next day. I truly have the best brother in the world — and it’s nice to have someone ‘Go Bald’ with me! I’ve always seen when cancer patients have their family or friends go bald with them… And now I have someone going bald with me!  So meaningful.  Thanks, Gabe! I love you!

 

HOUSE ARREST

As I mentioned, my White Blood Cell counts are extremely low and I’ve been advised by the doctor not to go out in public. So I’ve only left the house a couple times in the last 10 days, and those times were to go to family or go to the hospital.

I do not do well when told I shouldn’t do something!  Suddenly, I really want to go to the grocery store – or anywhere!  Feeling like a caged animal!

We really do love visitors, if anybody wants to drop by! We work from home, so pretty much always home. I can’t leave. You’ll have a captive audience. Just text me!

I have my next WBC test on Tuesday. I’m hoping to get better news!  I have a date with Martha planned next week to see John Edward and I’m hoping to speak with my grandmothers!! And I need to be able to go out in public for that.

Kidding aside, I really hope my WBC count has gone up. The alternative would be to get daily shots in the stomach, and I am REALLY hoping to avoid that.

 

I’ll update everyone on how Surgery goes tomorrow.  Send some good thoughts my way about 9am.

 

Much Love,

Merv