So it’s been a six weeks since my last blog update. After receiving such good news that I’m in remission, I wanted to take some time to celebrate and also to take my mind off things like treatment, and sickness, and all the yuck that comes with cancer.

But I still want to keep this blog updated – because my journey is not over. There is still so much follow up care and tests in my future.  And still lots of feels along the way.

So what have I been up to these past six weeks?  And what do I have coming up?

 

CELEBRATING

Mostly, we’ve been super thankful and up for celebrating the good news.

We hosted a “Ring the Bell” Survivor Celebration at the house the week after Derby. Surrounded by family and friends, I rang the bell signifying my end to treatment. It was a cathartic moment to ring that bell – finally feeling well enough to celebrate, and knowing that I don’t have to go and get sick again soon with any more treatment.

Luis and I also went on a vacation to Florida, for just the two of us to celebrate.  We spent four days in Miami Beach, and four days at Disney World.  Unfortunately, we both got sick with flu like symptoms for almost the entire trip – so for a vacation meant to celebrate my good health, it wasn’t perfect.  But by guzzling DayQuil & Mucinex, and popping Halls by the handfuls, we were able to enjoy everything we set out to enjoy.

 

THE BODY CANCER LEFT BEHIND

I’ve mentioned this before, but I got a lot of inspiration from someone named Melissa, who also defeated Hodgkin’s Lymphoma and blogged about the experience, keeping a positive attitude.

One blog post from her that I can complete empathize with is this one, titled “Getting My Body Back After Cancer”

One completely unexpected trauma of surviving cancer is standing in front of that mirror and looking at the body cancer left behind.

Scars.

Loss of hair, especially the eyebrows.

And an additional 20 pounds – easily the heaviest I have ever been in my entire life.

 

So the day after Derby, I went on a trial run with diet and exercise, for about two weeks.  I say trial run, because no diet or exercise happened during vacation.  But now that we are back in town, it’s back to daily diet and exercise for real.

The diet part, I find pretty easy.  Without being filled with steroids every other week, I have no appetite for the types of food that packed on the pounds.  No more excessive cake, candy, cookies, ice cream. In fact, I don’t think we even have any in the house. And I don’t miss it.  I went two weeks eating just healthy – and it was effortless.

The exercise part has me more frustrated.  Prior to my diagnosis, Luis and I had been going to the gym nearly every day – for 18 consecutive months. I was the fittest I had been since high school, and probably had better upper body strength than even then.

So to get back to the gym and realize I had fallen literally all the way back to zero was pretty traumatic.  Cardio, upper body, weightlifting – all the gains I had made had disappeared and it was like I had never been to the gym a day on my life.

I know that with discipline, I’ll get back to where I was. It will just take time.  But I don’t have a lot of time before I’m tasked with a Tough Mudder!  That… could be interesting.

And I know that I’ll shed these pesky pounds, which packed on almost exclusively in my belly region.  Not an attractive look for summer… I just want them gone NOW!

 

WHAT’S NEXT?

I have a battery of blood tests scheduled for Tuesday, June 13, as well as a consultation with Dr. Stevens.  Hopefully, all will go well there.

My next PET Scan isn’t scheduled until October, so assuming these blood tests go well, I’m not expecting any major anxiety until then.

If the PET Scan goes well in October, then we can start talking about getting this Port taking out of my chest – which currently is only serving as a (always mildly sore) daily reminder of what I’ve been through.

 

That’s all for now. I expect I’ll update less frequently, unless something happens.  But thanks for those who continue to read. And for those who are going through their own journey with Hodgkin’s Lymphoma – hoping you will soon find these “post-cancer” updates helpful!

Much Love

Merv

 

 

 

 

 

 

Tears of joy were shed today after meeting with Dr. Stevens, when he informed us that today would be our final day of chemotherapy treatment.

The PET Scan was “Fantastic. As clean as it possibly could be!” and any continuation of treatment past the conclusion of my fourth cycle (with today’s treatment) would be overtreatment in his professional opinion.

When we walked out of the Norton Cancer Institute after today’s treatment, we did so optimistic that we will not be returning to that building for the next 8 weeks! And while we’ll miss seeing the friendly faces at Norton on a regular basis – we sure are excited!!

We’re celebrating – and plan to continue celebrating!

 

MAKING THE DECISION

In the end, Luis and I were not faced with having to make much of a decision ourselves – but Dr. Stevens did take the time to explain the rationale for his recommendation to cease treatment at this point, and we got a chance to ask questions.

He cited the “Rapid 3” study, published in 2015, which justifies his recommendation to not include radiation as part of our treatment, following a crystal clear PET Scan.  We had always planned to skip radiation (assuming successful chemo treatment) in an effort to avoid those long term side effects.

RADIATION – As it was explained to us – the long-term side effects of radiation are unlike the long term side effects of chemotherapy because the likelihood of side effects only increases of time after exposure to radiation. There is no likelihood ‘bell curve’ as is seen with chemotherapy – it only goes up.  And given my young age and high likelihood of living to be 90 or 100 years old, that’s something we’d like to avoid.

He did say that other physicians come to different conclusions with regards to the involvement of radiation; this is just one of many studies, and the research into fighting Hodgkin’s Lymphoma is always evolving. But the good thing is that we get to choose from good options, and the success rate for this disease is high regardless of what we choose at this point, given the success of treatment thus far judging by the PET Scan. And we’re more than comfortable skipping radiation in an effort to limit long term side effects.

CHEMO – Because I have already undergone a decent amount of chemotherapy, I am already subject to the long term side effects associated with chemo.  But subjecting me to more chemotherapy would increase those risks.

Plus – and this is oddly comforting information to know – the risks associated with chemo follow a bell curve in terms of their likelihood.  I am most likely to develop a side effect in 5-7 years from now – but after 7 years, I am no more likely to develop another blood cancer than any other ‘normal’ person.

The development of another blood cancer (like leukemia or lymphoma) is the most likely side effect of ABVD treatment.  However, Dr. Stevens stressed that ABVD is much less likely to lead to a secondary blood cancer than treatments years for Hodgkin’s Lymphoma in years past, like the old MOPP treatment.

We asked again about the lump on my neck. He expects it to resolve on his own. He felt around my neck and shoulders and said he felt not just the large one I can feel, but several small lumps. He reiterated that nothing lit up on the PET Scan, so he expects these to resolves on their own.  If it noticeably grows, we are to return to have it biopsied.

 

CHEMO TREATMENT #8

After the happy news and the joyful crying and the sharing the news with family – it was a hard to sit down in the chemo chair and take the treatment, even for just one final time.

I’ve developed what Delonia calls “anticipatory nausea” which is pretty self-explanatory.  I actually start to get nauseas on the morning of chemo, and it can get pretty bad once I am hooked up to the machine – even before I receive any of the ABVD drugs. My mind just tricks my body into that response, I guess, by anticipating the drugs and picking up on queues using different senses.  The smells associated with the chemo machine (especially the sterilization smells that come when they clean their tools) can really churn my stomach!

Other than that, the actual treatment went off without a hitch. I won a game of chess vs Luis, and then somehow won a game of 500 rummy even more easily than chess! I’ll miss playing chess with Luis; I don’t think I will ever be able to convince him to play with me outside of the chemo room. Anyone else play chess?

At the end, the nursing staff came in and gave me a certificate showing my completion of treatment and threw some confetti at us, and sang us a little song.  We’ve really grown to like a lot of the nursing staff there, and I really will miss them. They obviously care a great deal for all their patients, as they’ve made us feel greatly cared for, and we feel blessed for that.

Now home, I’m feeling the normal side effects of treatment. I’m hoping it will be as smooth as the last two treatments, which saw me retreat from solid food for less than 48 hours and back to feeling nearly normal by the weekend.  And I’m hoping to poop before Sunday!

 

 

WHAT’S NEXT?

Well, I already said we won’t be back to Norton for 8 weeks. But I’m saying it again, because I like the sound of it.

BLOOD COUNTS – Delonia said it will take about three weeks for my White Blood Cells to return to par.  They were 2.27 today (should be at least 4), and my reserve tank was pretty depleted at 0.2 (should be at least 1.5). We won’t take another blood test for another 8 weeks, so we’ll just assume they return to normal in the meantime.  However, this does mean that I have to stay vigilant and take precautions for the next few weeks, and seek medical treatment if I develop a fever.

ENERGY – Delonia also told us not to expect a return to normal energy levels right away, and that for some people it takes 3-6 months to return to full normal energy levels. However, I’ve had plenty of energy at the end of each treatment cycle, so I’m not super concerned about this.

In fact, I’m looking forward to getting back to the gym, losing this 15 pounds of belly fat I’ve developed during treatment, and training up to TOUGH MUDDER in June (which I have convinced Luis to join me on!! Woohoo!). I honestly can’t wait for Tough Mudder – a real GOAL to work towards. I probably will get emotional at the end of it… but sorry, I won’t be going through the electrical field this time with a big chunky metal port embedded in my chest!!

HAIR – It may take up to 6 weeks for hair to start growing back fully — so I plan to keep a closely trimmed head for the next couple months.  I’ll be watching my eyebrows, hoping they start to come in a bit sooner.  Delonia said to not be surpised if my hair were to come back a totally different color than it was before, or to come back curly. She said that’s common, and that people even refer to curly hair after chemo as ‘chemo-curls.’

I asked Delonia if she’s ever heard of anyone like me who has a receding hairline, but then after chemo had a fully restored hairline.  She said that she has not heard of anything like that, but I remain hopeful.

8 WEEK FOLLOW UP – On June 13, we’ll just go in to consult with Dr. Stevens and get a battery of blood tests done to make sure everything looks okay.

PET SCAN & PORT REMOVAL – We’ll do out next PET Scan in six months, so around October time frame. Everything going well, we can then schedule surgery to remove the Port, which is a minor procedure (but one for which I will procure Vicodin – one way or the other – based on my horror story from the first procedure!)

 

IMPORTANT WORDS

What we call my state now is REMISSION.  That means that all the tests show there is no cancer in my body.  Some call this NED (No Evidence of Disease).

Generally speaking, using the word “CURE” in reference to Hodgkin’s Lymphoma should only be done after a patient has been demonstrably cancer free for 5 years. So I have my calendar marked – April 18, 2022 – as the day when I can say I am CURED of this terrible disease.

But starting today, I can also call myself a SURVIVOR.  And a proud survivor, at that. Luis and I faced this disease head-on and with positivity and the benefit of an incredibly supportive network of family and friends – AND WE WON! We kicked cancer’s ugly ass!  And we’re so proud to put the word SURVIVOR after cancer beginning today.

 

CELEBRATE!

We’re ready to celebrate!!!!!!!!!!!!!!!!!!!!!!!!!

PARTY – We’re having a CANCER FREE party at our place on Friday, May 12!  Seems a little far away, but I need to have some time to recover from this chemo treatment – and I need to get on the other side of Derby week!

If you’re reading this – you’re invited!  Just leave a comment on this blog to RSVP unless you’re doing so on Facebook (we’re doing the RSVPs and details on FACEBOOK; I know not everyone has Facebook).

Norton’s didn’t have a bell to ring (a common signifier of successful completion of treatment in cancer patients) – but we have a bell next to our front door that I have been waiting to ring, and I’m ringing it at the party. Our bell was blessed at Trinity High School’s chapel by Father Zettel. And I want everyone attending to also give it a good ring, as a prayerful way to wish us continued remission and, eventually, a cure!

1835 Bonnycastle Avenue – 7pm on 5/12.  Mark your calendars. Come celebrate with us!

 

FLORIDA VACATION

Luis and I are also planning a vacation for the two of us – a chance to get away and celebrate together. A couple years ago we made a goal to travel more and share more experiences together. In fact, we stopped giving each other birthday & Christmas gifts, instead opting to do more trips together and make more memories.

We’re targeting mid-May for a trip to Florida. We’re looking to stay a few days in Miami Beach – a place Luis used to live but to which I have never been.  And then, we’re planning to drive up to Disney World and spend a day in each of the four parks; neither of us has been since our parents took us as children. We have each wanted to go to Disney World and experience it ourselves before we have kids – so we’re going to do it!  Recommendations for both legs of the trip welcome!

 

THANK YOU!!

Sincerely, from the bottom of our hearts, THANK YOU for the continued prayers and positive thoughts!

PRAYERS ANSWERED! 

POSITIVE THOUGHTS RECEIVED!

This journey has not been easy – but it’s been made easier by our incredible support network!  We could not ask for a more supportive family.  Especially our MOMS, the true MVPs of this process!  My mother-in-law, also a lymphoma survivor, always someone I could talk to about my anxiety with the disease and ask questions.  And my own mom, who came to the house every treatment cycle and cleaned from top to bottom, to keep me healthy – usually Ashley with her.  And my dad for doing almost all of our laundry for the last 5 months!  And to both of my parents for jumping in and fixing MAJOR household repair issues we suffered during the course of treatment!  And my cousin Arturo, my family oncologist who was always up for answers questions, especially when I was suffering from scanxiety!  Just rock stars, my whole family!

And all of our friends, and all of our colleagues at work – everyone has been so incredibly supportive during this process.  Our fireplace mantle is literally FULL of cards sending us well wishes!!  I can see the thousands (over 10,000!) views this blog has received – so many people taking time out of their day to check in on how I’m doing, maybe drop a positive comment on Facebook – it all has been so wholly positive for our own battle to stay positive each and every day. And staying positive this whole time has led to a wholly positive outcome: REMISSION!  SURVIVOR!

So much love to everyone. Keep those prayers and positive thoughts coming. We love you!

– Merv & Luis

We are still celebrating the good news from last week!  Here is the official “Impression” (or succinct conclusion) of last week’s PET Scan:

Resolution of the previously seen hypermetabolic adenopathy in the mediastinal, right internal mammary region and right lower neck.

The results were delivered to us by a nurse and councilor – and we’ve not had a chance to speak with Dr. Stevens about the results. So there is still a lot we don’t know, and a lot of questions we still need to ask – including what to expect for future treatment, and if there was indeed anything worrying about the Scan results that we haven’t yet been told.

But I haven’t given a true detailed update in a while, so let me catch you up…

 

HOW I’M FEELING, PHYSICALLY

For the most part, I’d had a very good run physically (knock wood!).  Both my sixth and seventh Chemo treatments have gone by with very minimal side effects, and I’ve been much less fatigued by these treatments than by most of the previous treatments.

After the sixth treatment, Luis and I actually went to Rough River for a weekend and did a nice hike – just three days after treatment!  A big thanks for our friends Jeremy & Johnny for letting us use their cabin for the weekend. Rough River holds such special memories for me as a child, it was nice to get away.

And this weekend, Luis and I went to Indianapolis for a small work engagement at Hoosier Park and got a chance to do some sightseeing around downtown Indy.  And yesterday, we met up with Jill and walked about 6 miles – just 5 days after my chemo treatment!

Also, I’ve been able to get back on solid foods within 48 hours of each of the last two treatments, and generally a regular diet within just a few more days.  For some reason, I still can’t even begin to think about Mexican food without getting nauseous (which is sad, because Mexican food has always been my FAVORITE food). But everything else is normal.

The one lingering side effect that I cannot seem to shake is the constipation.  Like clockwork, if I get chemo on Tuesday, I just know that I am not going to poop until at least Saturday and probably not until Sunday.  No matter how many stool softeners I take… So, if you’re someone going through treatment reading this – good luck with that!

And with the hair loss – it’s difficult to tell how much hair I’ve lost on the top of my head because I keep it trimmed so short – but my eyebrows are almost completely gone now.  I’ve always had very thick, bushy eyebrows (which need to be tweezed to make one brow into two). But now, I would say less than 25% of the lashes remain.  I’m not happy about it, but I’m not too bothered by it either.

 

SCANXIETY

While I’ve been feeling physically well, the past few weeks have been incredibly difficult to get through.

About five weeks ago, I developed a new lump on my neck.  This new lump was above the original lump (which has disappeared) – on the same side of the neck, but more underneath my jaw rather than down by the collar bone.

At my sixth chemo session, I had a nurse confirm that there was indeed a large lump on my neck – a new growth.

This of course freaked me out right before my interim PET Scan, which had already been delayed once.  The scan had been scheduled for April 10, but after a couple days of severe anxiety, I asked to have the scan moved up to as early as possible. They rescheduled for April 5.

My anxiety would get so bad that I would be subject to bouts of crying – which is very unlike me. I’ve honestly not done a lot of crying throughout this journey – but I’ve done a heck of a lot of it the last few weeks about this new lump on my neck.

I sought the professional help of a behavioral oncologist councilor.  She was very nice and easy to talk to. She prescribed me Xanax, which I’ve found helpful.

When Luis & I went in for my 7^th chemo session on April 4 (the day before my PET Scan was scheduled), the nurse said that Dr. Stevens had decided to delay my PET Scan by several weeks.

Uncontrollable tears. Ugly crying. I couldn’t stop worrying about the lump and WHY would he delay a scan?

We finally were able to get them to move forward with the scan on April 5.  We were ready to change cancer institutes to make it happen, but luckily didn’t have to go down that road. Although, I really think there was a LOT of unnecessary stress.

FWIW – Failing to have an interim PET Scan until after the conclusion of four full cycles of ABVD treatment is NOT standard practice, and I have no reason for why Dr. Stevens wanted to do that. But it does bother me.

 

RESULTS

So, what we’ve been told is that the results are all “GOOD NEWS” and that this shows a resolution of the cancer.  We’re happy, and excited, but there is a lot more ambiguity than I would like – and a lot of questions we still need to ask the doctor.  We have out next consultation on Tuesday, April 18, when I am scheduled to have my 8^th chemo treatment.

There’s just a lot of medical terminology on this one-page report about which I have not been able to properly ask questions…

For example:

HEPOTOBILIARY: Slightly mottled uptake without evidence for focal legion. Liver background SUX mean, a reference for comparing FDG studies is 2.1 g/mL.

Okay, great… I know about half those words, and from Googling, I think Hepotogiliary means Liver?  Also from Googling, I think that a rule of thumb for then Good/Bad level of FDG uptake is 2.5… soooo, should I be worried about a 2.1?  And if so, how worried?  I much prefer a black and white contrast (why can’t it just say ZERO?)  rather than worrying is 2.1 is too close to 2.5, or whether that number even really matters?

CHEST: Physiologic FDG avidity is seen in the mediastinal blood pool and myocardium.

Okay… So, no number here, but some of that doesn’t sound so good to me as a patient who doesn’t really know what any of this means…  That sounds like they DID find something in my chest?  But I don’t have any numbers to misinterpret, so I guess I just have to sit on that one…

HEAD/FACE: Physiologic FDG uptake is seen in the visualized regions of the brain, extraocular muscles, large salivary glands and oropharynx.

Well, this is just terribly worrying and the reason I can’t stop taking my Xanax or probing my neck… that reads to me like they DID find something in my neck – and the salivary glands are right where my new big lump is…  So did they find something?

NECK: Physiologic of the uptake is seen in the neck muscles.

Okay, again, this reads to me like they found something… which doesn’t support their conclusion… but again, I just don’t know enough to be drawing conclusions.

So, to wrap this section – I’m still suffering from extreme anxiety, even as I exude a positive attitude and continue to go about doing things in my life that make me feel ‘normal’ (like small weekend getaway trips, or going out to dinner).

And I’m not going to beat myself up over my anxiety, either, because I think it’s normal.  Not just now, but probably for the rest of my life.  I doubt that no matter what happens, or however many years removed I get from treatment, that I will ever be able to truly trust my body.  Nor will I ever be able to cope effectively with a ‘normal’ popped lymph node without some pretty severe anxiety.  But I think that will just be a part of my new reality.

 

MOVING FORWARD

So, I guess a long story short is this:  The conclusions of my scan – the one sentence at the bottom – says it shows resolution.  But there is enough information above it to keep me worried and stressed for the next eight days.

Assuming all of my concerns are overblown (and they could very well be), we still don’t know what my path forward in terms of treatment is.  It’s conceivable that Dr. Stevens will decide to finish treatment after this 8^th chemo session.  Or, he could decide to continue through and finish all 6 cycles, which would put me in chemo through mid-June.  Or, hypothetically, he could present the pros and cons of both choices and let us choose which to do… which would be incredibly stressful, and a really hard choice.

Simplified, here would be the pros and cons of continuing treatment for six full cycles (vs stopping treatment now since the PET Scan shows it’s gone)

Pro – Less likelihood of a recurrence by making most sure that all the cancer – even the microscopic amounts – is fully gone.  The degree to which is reduced the likelihood is not certain but not hugely significant – they may give me a number, but it will be small.

Con – Greater likelihood of long-term side effects including secondary cancers, lung damage, and heart damage due to more chemo treatments. Long term chemo side effects are worth much consideration especially in younger patients like me, who plan to live another 40-50 years, as the chance of these side effects go up not only every subsequent year of one’s life, but also up with each additional chemo treatment.

So, it’s an imperfect, complicated choice.  And that’s not even considering our general readiness to just get back to a normal life.

 

THIS BLOG

Recently, I’ve received a few people reaching out to be – via Facebook and this blog – saying that they or a loved one have found some comfort and understanding on my blog.  While it’s always hard to hear that someone has to walk this road, I really am glad that others are able to use my blog as a resource to try to understand the process, put a chronology to it, and mentally get ready for what they have to go through.

When I was diagnosed, I found melissabeatslymphoma.com – it was the most helpful blog I found on the internet. Melissa was my age, presented with nearly the exact same symptoms (lump on neck), was Stage I (I was Stage II)… and she detailed her journey.  It helped me understand what I was about to go through, and her positive attitude inspired me. We’ve been able to connect and stay in touch through my treatment, and it’s awesome for me to see her living her life to the fullest, now years into remission. I look forward to that myself.

So if you’re someone reading this that is going through treatment, or recently diagnosed – please reach out if you have ANY questions or just need someone to talk to! I really am so happy to answer anything or talk about anything (really, anything! Look at how much I talk about poop on this blog!).  It’s easier to go through this with SUPPORT, especially of someone who has gone through it.  I am so lucky to not just have a huge, prayerful support system – but also a mother-in-law who recently beat Non-Hodgkin’s Lymphoma, as well as a cousin who is a hematologist.

 

PRAYERS & POSITIVE THOUGHTS

We’re glad to have received what we believe to be good news – but we still ask for lots of prayers!  We think they are working, and we want them to continue working!

We took in some Easter candy stuffed Derby Glasses into the staff at Norton Cancer Institute as a big THANK YOU for saving my life last week 🙂

Much love to everyone!

-Merv

This won’t be a long update (I will post something more in depth tomorrow), but I wanted to share with everyone the great news we’ve just received.

I underwent my interim PET Scan yesterday morning – my first true progress update since I started treatment – and we received the results this afternoon.

Scan shows RESOLUTION IN BOTH NECK AND CHEST.

Those were the only two regions which lit up last time, and they are NOT lighting up any longer! From what I was told by the nurse, this is about the best news we can hope for after the scan, and hard evidence that this cancer could be truly, 100% behind us!

 

NEXT STEPS

While this is obviously great news, we only got the results from my councilor and not from my oncologist, so there’s still a lot we don’t quite know:

• How much more treatment does Dr. Stevens recommend?
• What are all of these medical terms in the results that I don’t quite understand?
• What is this lump in my neck that I can see and feel (more on that in my next, lengthier update coming tomorrow)

We have our next consultation scheduled on April 18 (12 days from now) in conjunction with my next chemo session (my 8^th treatment and the close of my 4^th cycle).  So we’ll know more then – plus, we will send all of our info to Arturo, so we may have more answers sooner rather than later.

 

CELEBRATE

In the meantime, I just want everyone to know and celebrate with us that we have gotten truly excellent news today!  It’s been such a long time since we’ve gotten good news.

 

THANK YOU as always for the positive thoughts and prayers! I think they have worked – but keep them coming just in case! 🙂

MUCH MUCH MUCH LOVE to everyone!

-Merv

 

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

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