Radiation; the Monster

Stable. Not exactly the word I was hoping to hear during my three-month follow-up with Dr. Klineberg.

As Dr Klineberg,my radiation oncologist, at Johns Hopkins Hospital, explained the classification ‘stable’ is good thing when it comes to monitoring the growth and impact on a tumor following radiation treatments.  I was certainly hoping for something more substantial. Perhaps even something celebratory. It would feel far more rewarding to hear that the tumor was ‘gone’, ‘dead’ or even ‘vanished’, but given that plain ‘ole ‘stable’ is good, I’ll gladly take it.

With the MRI behind us and the tumor’s measurements recorded, we moved along to discussing my bloodwork and how I’ve felt post-radiation. It was expected that this three-month check up with the oncologist would confirm what my endocrinology team diagnosed through blood tests – that being that the tumor was now badly damaged and its growth hormone production significantly slowed.  That was the goal of the treatment and indeed this is good news.

It was also confirmed that since my body is highly susceptible to radiation, the impact of the treatments is much further along than anyone on my care team anticipated at this early stage. This is why no one expected me to feel as miserable as I was feeling up until a week or so ago. I guess when it comes to things that are rare – like rare diseases such as acromegaly – my body thrives.  Just like how it reacted quickly, and in rare form to the radiation. Dr. K reiterated that typically, the impact of the treatment takes time. Results are expected to take at least a year. If not two or three. In my case, and catching my entire clinical care team off guard, my body responded in a mere 90 days.

This is a good thing. Fortunately, my team prescribed stereotactic radiosurgery as the ideal method to target the fragments of my pituitary tumor as it is delivered radiation in small, strategically targeted doses on a daily basis over the course of several days. By doing this the damage to the areas surrounding the tumor were less likely to sustain damage throughout the process. My eyesight remains excellent. I have not lost a sense of smell or taste and with continued work at the gym, my balance is better than ever. It turns out my pituitary itself isn’t in the best of condition.

We knew this was a possibility going into it. Now I focus on dealing with the reality. Having sustained damage during the surgery to remove the pituitary tumor in 2014, it makes sense that my pituitary is no longer strong enough to produce the necessary hormones my body needs to survive.

Dr Klienberg confirmed that the additional pituitary damage is due to the radiation. He added, as both Dr. Wand and Dr. West had, that both hypothyroidism and adrenal insufficiency were likely lifelong conditions.

Unless, of course, my body has the rare ability to miraculously repair my damaged pituitary gland. And, for today at least that’s what I’m going to choose to believe.

Ups and Downs

While I managed to remain upbeat, energetic and mostly positive throughout the radiation treatments, these last three months have been quite the opposite.

It’s had me thinking about how we approach things. How we use our current perspective to set our sights on where it is we’re hoping to go. How we talk about the journey in relation to the milestones.  How the day to day is largely unknown and thus not really discussed. It’s what I did.

I knew I had a set number or radiation treatments that would require schlepping back and forth from Johns Hopkins Hospital in Baltimore. I knew I would grow increasingly tired as the treatments went on. And I knew the treatments would be followed up by subsequent 3-month and 6-month MRIs to set a new baseline to determine whether or not the tumor was impacted by the treatments. I also knew I needed to continue getting bloodwork every two weeks and that I needed to maintain the medicinal regiment I had become accustomed too. I understood it could be at least a year, if not two or three, before I would start to see any relief from these treatments.  I therefore expected the day to day to be no different then before the treatments.

I had spent a fair amount of time discussing these details with my clinical team, with friends and with family.

We celebrated following the final radiation treatment and I focused on getting stronger by doubling-up on my time at the gym and in yoga studios.  I continued to avoid sugar (except for ice cream) and alcohol and I ate as healthy as I possibly could. I approached it as project and attempted to manage every detail – I had clearly defined goals, a timeline and a carefully coordinated schedule to make sure Eddie, our twins, and my business were squarely a part of the plan. Little did I know I wasn’t in control and that my body was already setting another course.  In fact, my body started to respond to the radiation treatments in a far greater way then imagined.

After a few of weeks, I noted that I was continually tired, my headache had returned (and with a vengeance) I was beyond moody, my body ached everywhere and I had absolutely no energy. My lack of energy and patience stole the fun from family time with twins, it made it challenging to push through at the gym and it made it hard to remain focused on work for more than 90 minutes at any given time.

Finally, while Eddie was traveling for work, I admitted how I felt.  Having sole responsibility for my families morning, evening and nightly routines proved beyond challenging. By Wednesday of that week I was going to bed at the same time our as our three-year old twins and was dragging myself out of bed by 6:30am to make their breakfast of scrambled eggs or oatmeal. It was Thursday morning when Mr. P, Eddie’s dad, texted and asked how I was doing and, without any energy apply a positive spin, I responded quite simply, ‘miserable’.

It was the honesty I needed and it spurred me into action. I immediately sat down and drafted an email to my endocrinology team explaining my symptoms–of which, miserable was really the only way of summing it up–I detailed my overall fatigue, body aches, lack of appetite, odd tingling feelings in my arms and chest, inability to achieve quality, restful sleep, heavy bags and dark circles under my eyes, and just altogether how I everything seemed to feel completely wrong.

Within minutes both Dr. Wand and Dr. West responded and I was scheduled the next day for an adrenal stimulation test followed by a complete endocrine blood panel and my 21-day treatment injection. Later that afternoon I was diagnosed with hypothyroidism and adrenal insufficiency. Both diagnosis suggested my pituitary gland was damaged during the radiation treatments.

The day I took my first morning dose of hydrocortisone the day after. It was like taking a magic pill. My mood changed, my energy surged and within an hour or so I felt again like myself.  Not only did I need the steroid to live, but I realized too how badly I needed to feel like myself.  I realized how feeling like me would make everything feel better. And it did.

Success?

I did it. I think.

I pulled through my first 8 day business trip since completing radiation treatments. And I managed to remain largely intact. Some things were different.

First, I needed to remind myself myself to stay hydrated and to stop and eat.

Second, the reality of my decreased stamina and appetite was clear. Neither have fully returned. The latter is probably a good thing, but without a solid eight to nine hours of sleep I’m pretty useless. Unless, of course, I remind myself to eat.

And lastly, I couldn’t push as hard as before. I needed to relax.

So was the trip a success?  Well, I did it and managed to find moment to relax poolside too. (Yes, fully protected thanks to a big ‘ole umbrella and SPF 70!).

30 Days

What a month. I remember ringing the end of treatment bell June 30th as if it were this morning. And, while I should have probably rested, I jumped right back into the things following that day. I had set aside a number of work and home projects since starting radiation on May 9th. There was no better time to get started back in then the present. It should go without say, though, that I have thought a great deal about the 32 times I laid on the treatment table. I took note of my first full, headache-free day and, a full week later, the satisfaction of feeling energetic enough skip the afternoon nap.

Getting back to work was more complicated then I expected. I was tired. My headache still hurt. I was further behind then I had anticipated. The combination was stressful. Eddie reminded me to forgo my natural tendencies and take things slow, easing back in and focusing on one thing at a time. Still it felt I returned too soon. The realities of catching up combined with new client requests, resuming weekly meetings and attempting to onboard two new employees reminded me that the pace I was used to wouldn’t work—especially with three year old twins. Owning a small business is challenging on its own…add dealing with a health condition that requires numerous appointments every week and a diminished energy level and the demands really added up. Thank goodness I have an absolutely incredible team of talented professionals committed to the work that we do. I  was trying to do it all, plus working out regularly, and my usual, I can handle it all, approach wasn’t working. I felt lost. Lost at my slower productivity, lost in the hustle and lost waiting for some sign that the treatments had worked.

Thankfully both Eddie and Kevin suspected this — I was stressed. Kevin wisely suggested I return to the mat. Eddie agreed and cleared his schedule —once again— so I could take in a class the next day. It worked and that first yoga practice helped me realize that I needed to reframe my perspective of ‘just waiting’.  I have never been good at standing idly by. Waiting until the MRI in September to find out whether the treatments had any affect was stifling. Dr Kliengberg cautioned me on this.

I needed to focus on the here and now. Get back to living and celebrate the moment. The acceptance of this left me immediately lighter, refreshed.

While I remain hopeful that the tumor in my head is slowly dying, at the moment I do still have acromegaly. But, my initial lab results are looking quite good. In fact, I was even able to cut back on the daily injections. A huge win!

Today I even feel stronger and healthier then I can recall having felt in years. I am spending more quality time with Eddie and the twins, family and friends, getting to bed before 10pm as often as possible and making the healthiest dietary choices possible.

I’ve got this!

Day 32: Ringing the Bell

Getting up and out of the house was easy this morning. It was a big day!

As Eddie, Mike, Carl and I made our way to Baltimore, I flashed back to seeing the three of them in my neurological intensive care room three years ago. These amazing men are everything. They’re the ever-present, always strong, caring and supportive. They’re at there of my incredible support network of friends and family who have been there day in and day out. From surprise quiches and gluten-free muffins for quick an easy breakfasts; cartoons, cards, and oodles of magazines to inspiration and humor, to delectably tasty treats; texts, calls and playdates with the twins, I am truly beyond lucky.

I had come to expect the drive up at this early hour to be quick and easy.  Today was no different. We arrived as planned to find Bob and Donna already in the waiting room.  They were in early for Bob’s first treatment of the day–he’s one of the really lucky ones who gets to do this whole radiation thing twice a day. Can you imagine? Anyway, Bob’s treatment was in process, but Donna was their in the waiting room with two smiley-faced happy balloons. She picked them up so the twins would have reason to celebrate today too. How great is that?

My treatment team was running a little late, but I was called on back for treatment number 32 just after 9am.

The entire morning felt ceremonial. It was it as if everything had its moment; its significance. Yet, nothing other then my excitement was really any different from the 31 treatments before. That was until I heard the unlocking of the ninth and final clasp of my mask as I was unlocked from the treatment table. That was the biggest relief. It represented independence. Independence from this schedule, the drive, the treatments, from not knowing how I’d feel or if I would even have the energy to tackle any sort of work task. Or stay awake beyond 7:30pm for that matter.

While the unlocking of that final clasp was freedom, the results of radiation take time. It could be two or three years before the full effects, positive or negative, will truly be known. Progress is measured with quarterly MRIs and routine blood work.

Fear not, my confidence remains high. This will work. This feeling of independence will continue. Until that’s confirmed, we wait.

Day 31: Advil 

After eight blissful, headache-free days, I went straight for the Advil when I woke up this morning having felt the oh too familiar pressure slowly building deep between my temples.

Earlier in my treatment I stood firm refusing to give in, but that all changed around treatment number 26. The headaches were just too much and I gave in. It turned out 600-800mg of ibuprofen made all the difference. It did this morning too. The headache had largely dissipated somewhere along our ride on the Baltimore-Washington Parkway.

Unfortunately, the relief was short lived. By the time I climbed off the table following the treatment it was back. It was disappointing. I didn’t have time for it either as I had busy day ahead of me. Not only was I due to see Dr. West for blood work and June’s second Somatuline Depot injection, but I needed a productive, distraction-free day in the office.

It felt strange walking out of the studio this morning. I have met some wonderful (and incredibly strong) people along this road and while I certainly will not miss schlepping up to Baltimore at the crack of dawn, there are a few things I vow to maintain. Including forcing myself to slow down to appreciate the moment, one-on-one time with friends and family and the surprising benefits of 22 minutes of quiet, contemplative rest.

Tomorrow is going to be huge. I cannot wait!

Day 30: It’s Official

I had a good surprise following my treatment this morning.

Quite unexpectedly, during my time with Dr. Kleinberg, I was presented with the treatment release paperwork! Although I have two treatments before completing this part of the journey,  signing off on the end of the treatment and the protocol to follow felt monumental.

Complete with the mask’s impressions on my forehead and chin, I felt that I truly on my way to a healthier being.

Now I need to get serious about my Superhero mask. I have gone from wanting to toss it in the trash; being finished with it entirely, to appreciating the significance of its role in my treatments.

It’s time to get creative.

 

 

Day 29: Final Four

Today is a big day; after a much needed eight day break, I am relaxed and ready for the final four treatments.

The break was great for me. I spent the time away on a much needed family vacation exploring Copenhagen with Eddie, the twins and a group of extended family. The long flight and extra family allowed me to relax and catch up on sleep between explorations. Now back in Washington, I feel physically and mentally prepared to tackle these final four radiation treatments.

I couldn’t help but feel a bit strange as I parked in a ‘reserved for radiation patient’ parking space this morning. I don’t feel sick. I don’t feel tired. I don’t feel anything other then normal. I suppose this is my normal. Well, at least until Friday.

Carl and I waited patiently until I was called back. The mask felt super tight today. Like it was squeezing my head somewhere it didn’t belong. Other then that, the treatment was uneventful and we were on our way back to DC ahead of schedule.

The countdown is on!

Day 28: I got This

As I dragged myself from my bed and into the shower just before 6am, I was reminded it was Friday. Friday’s carried on a new meaning as the treatments carried on.

The daily treks were starting to wear on me, but thankfully this was treatment #28. Following today’s treatment I am rewarded with an 8 day break before diving into the final four! Ahhhh how I didn’t think those days would come!

The waiting room is quite different these days. There is Bob and his wife Donna, and generally two others. One who spends most of her time rocking back in forth complaining about the pain and discomfort from the side effects of her treatment, which includes both chemotherapy and radiation simultaneously. While Acromegaly is rare and causes its own host of chronic pains and daily issues, I am fortunate my tumor is benign. As Dr Q, my neurosurgeon pointed out during my first meeting with him, this would be a entirely different path if my tumor was precancerous.

I headed back for my roughly 22 minute treatment feeling more upbeat and positive then I’d felt in a few days. Let’s do this.