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