Choosing Limbo?

Transitions

I just took my first sip of a latte at one of my favorite cafes in Brookline. My first coffee shop trip since surgery! Coffee shops, with their ambient noise (and of course endless array of pastries and coffee), are my favorite places to write. And if you have put one and two together, you’ll have caught the hint that I’m no longer living at my parents house, but back at my apartment.

During my 2014 recurrence, I moved from my parents house back to Indonesia. In 2018, my Mom and Stepdad had to leave my place in California and go back home to Boston. This time, at least I’m in the same country, state, and only 30 minutes away from my parent’s place. But the transition doesn’t get easier. Having a brain tumor, and then whatever treatment/surgery comes along with it, introduces vulnerability…fragility…physically and emotionally. At home it was comforting to be able to solely focus on my recovery, knowing a Mac and Cheese was waiting for me at the end of the day followed by a movie and homemade popcorn.

What I’ve learned from past experience is that there gets to be a point where comfort can stagnate recovery. So, after a month at my parents place, I moved back to my apartment to continue my PT/OT and rebuild my stamina. Since moving back, my stamina has taken the biggest hit because changing up routines, doing everything that comes with “adult life,” is exhausting. I let myself lean into that fatigue, but it doesn’t feel great, and I yearn to dash back to the comfort of my parent’s home. But I know this is the healing process, and I’ll keep going because sometimes I get a great day when I can come to a quaint coffee shop. I get a day where I have reminders of my life pre-recurrence, and it lets me know that I’m healing, and moving forward.

Thank you to my Mom and Stepdad for, simply put, everything. There are no words to describe how grateful I am.

Choosing Limbo?

Since 2018, I have been a part of a study to create a set a questions that help patients learn what is most and least important to them when making treatment decisions. Due to my recurrence, they contacted me in October to do the study again. Below are the results:

In summary, the time until cancer progresses is the most important factor to me when considering treatment options. The second most important factor (almost equal), is quality of life. To me this means being able to communicate and have all mental faculties; being able to be with my family, especially my nephews; and being able to sail. Tied for third most important to me are frequency of clinical visits and the hospital of treatment. Why these? I’ve learned that high frequency of treatments can interfere with planning activities that are important to me and thus quality of life. Likewise, staying at my current hospital is incredibly important to me because I get to be close to my family.

The balance between quantity and quality is what always influences my treatment decisions, and is ultimately why I went for an aggressive surgery with a highly recommended and skilled surgeon. And as you know, she was able to remove the entire tumor nodule! See the below MRI scans from before my surgery and during the surgery.

I was fortunate to not need inpatient rehab. And while my hand dexterity and other factors of my arm are still recovering (…my hand is getting tired writing this), I’m doing incredibly well for nearly six weeks post-surgery.

So what’s next?

In my head (no pun intended), my plan was going to be surgery and then chemotherapy, specifically the P (Procarbazine Hydrochloride) & C (Lomustine or CCNU) of PCV. The V doesn’t cross the blood-brain barrier well. PCV chemotherapy was the original standard of care before Temodar came along, which was the chemotherapy I took during my 2014 recurrence. In 2018, I did experimental treatments because of a thing called MGMT, which is a molecular marker in tumor DNA related to DNA repair. My MGMT is unmethylated, so it creates the enzymes (tools) to repair the tumor DNA. Due to this, we decided not to do PCV in 2018 because research demonstrated that chemotherapy (which tries to destroy tumor DNA) is less effective against MGMT-unmethylated tumors. However, more research has demonstrated that this is not necessarily the case. Thus, having gone through most adjuvant therapies, PCV is my next step.

The question is when to start.

Before my surgery, my oncologist handed the reins over to me. Either I could be aggressive and do it right after surgery, or I could wait until further progression and have better quality of life during that period.

This is not an easy chemotherapy. It is six, six week treatments. However, most people can only do three or four treatments because their platelets drop too low despite platelet infusions. Additionally, there are the standard symptoms of nausea, fatigue, and whatever else you want to order from the chemo symptom menu.

Despite these quality of life challenges, I was still focused on starting chemo once I had enough rehab time post-surgery. I thought, “why not just get it over with if I’m going to have to do it anyways.”

Last week, I met with my oncologist again to discuss chemotherapy. First things first, he wanted to schedule an MRI at the end of the month. He then presented the options of starting chemo the day of my MRI, OR, we monitor very closely (every 2-3 months), and start at the first sign of progression. Unlike our meeting pre-surgery, he was definitely leaning more towards waiting. His rationale was that my tumor is (fortunately) slow growing, so if we monitor it closely, we’ll catch it for treatment before any significant growth. In that time, I’ll be able to build my strength from surgery, and simply have a better quality of life. After a lot of back and forth, towards the end of our appointment he said, “If it were me, I would wait.”

“If it were me, I would wait…”

That sentence threw me back because my doctor does not directly give his recommendation if he doesn’t mean it. Waiting goes against what I was intending to do, and simply put, my nature. But, the reasons make sense.

As my therapist put it, starting chemo right away would be a physical challenge, whereas waiting would be a psychological challenge.

Am I ready for that psychological challenge?

Am I ready for that uncertainty? To enter a state of limbo where I slowly return to the “healthy” world in many ways preparing myself to reenter the “sick” world in six months, a year, maybe two?

Being in limbo can be paralyzing, but just this morning before I came to the coffee shop to write to you all, I saw a postcard on my desk. It’s from my friend Megan, who recently passed away from a Glioblastoma. Before she passed, she truly lived. The postcard said:

Dear Jeremy, Sail until the very last moment!! Thanks for reminding me to continue chasing fun while facing unknown. With love, Meg

I’m not sure if I’ll choose to wait. I’ll make a decision at my MRI at the end of the month. But, if I do choose limbo. If I do choose uncertainty. I’ll sail until the very last moment. I’ll chase fun. And tackle this tumor when the time comes.

With love,

Jeremy

10 Replies to “Choosing Limbo?”

  1. So glad you are doing well even though you still have much ahead of you. You have been in our prayers all these years. So we feel some have been answered. We send our love to you and all the family. Prayers in Syracuse will continue and notes from time to time as we get updates from you.
    Love Carole and Harvey Koenig ❤️❤️❤️❤️

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  2. Jeremy – Janet Perlman passed your In Limbo? blog post to me. The topic for our February FMM with Dr Remen is Uncertainty and your blog puts this in clear perspective. May I read all or some of it to the group? I love Megan’s point and your response.
    Matt Zwerling

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    1. Hi Matt. Great to hear from you. You may of course use whatever part of the blog post/other writings that you find useful. It would be my honor. I truly miss all the different FMM’s I took part in, and gained so much from them.

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  3. Jeremy
    Whatever you decide will be the right decision. Only you and your family can make the call on limbo or not. The oncologists recommendation to wait carries a lot of importance in the decision.

    I, as all of us following your journey, want what is best for a wonderful young man and pray he becomes a wonderful old man.

    Your journey is a strength for all of us to lean on. Stay strong and we all have you in our hearts and prayers.

    Rick Hamilton

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  4. Hello Jeremy,
    Thanks for the update and glad to hear you are working hard on your recovery and PT. Tough choices ahead, but you have a record of navigating many of those successfully. Keep enjoying those cups of coffee and anticipating your next time on the water.
    Erik

    Like

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