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