The neurosurgical team thought I may be able to go home post-op day 1, but Mom did not agree with their clinical assessment, so we stayed until POD 2. Post op day 1 just seemed too early to her, so I walked from my room in the ICU to my shared room on the floor, reluctantly taking the elevator. The hospital is just no place to recover. My roommate was watching Family Feud at 4AM, Tylenol given only by request, vitals at 12AM and 6AM. If something was wrong, I would not be sleeping. After patiently waiting until 12PM of discharge day, my sisters became my advocates by asking the nurse to remind the rounding residents we were ready to go. The squeaky wheel is annoying, but gets oiled. Not that I’m suggesting this behavior as an in-patient, or that it may be needed at Spectrum :). Discharge paperwork read as follows:
Primary diagnosis: brain tumor. Other diagnoses: acute post-op pain (not really except foley trauma), urinary retention with incomplete bladder emptying (definitely), bradycardia (technically, I guess).
Patient tip #1: appoint advocates to be annoying to care givers, act like an innocent bystander. “They’re family, what can I do?”
I did not need discharge instructions, just a few scripts and follow-up appointments. At least we had time for serial visitors and selfies. At last, Katie drove me, Amy drove Staci, parents drove separately, and we headed back to Grand Rapids. We listened to songs she introduced to me from the 1990s as she went through college, me a mere high school student.
Figure: Hospital photos and selfies while in the ICU and waiting to be discharged. Upper Left, Scott Visovatti and Shelly Schmidt, 3/4 chief medical residents from 2006-7 (don’t worry Mark Huffman will make an appearance soon). Top right, Internal medicine program director JDV and me. Bottom left, nurse Sarah and me. Bottom middle Mike Bruderly and, yes, me again. Bottom right with Jay and Meg Lewis (come on back to Michigan!).
The decadron carried me through Monday after surgery. I came home with a steroid taper, Keppra (to prevent further seizures), and 30 Norco tabs. My hair was dripped with an oily substance that surely was meant to kept the area clean during surgery, but now had the appearance of gel gone wrong. Even after stopping decadron Monday, I felt well for a few days. As my dad / PCP liked to say (board certified internist and palliative care physician), decadron has a 36 hour half life. He likes to repeat facts, but this at least was true. That means you stop it, but it sticks around in the system for several days. I hit a wall on Thursday at lunch at Rose’s with our regular family meals together. Body just shut down, and I needed to exit and go to bed. The fun had stopped, the thrill of getting through surgery passed, and now onto a new normal. I restarted a short burst of decadron (let’s get this party restarted), and just prolonged the taper a couple of days.
The new normal was greasy hair, poor sleep, family dinners, headaches, and walks. This was in contrast to dry, chlorinated hair, a busy cardiology practice and interval training.
Figure: Left, greasy hair which persisted for about a week until I was comfortable being a little more aggressive with soap around staples. Right, resting in the middle of a typical exercise walk around Reeds Lake with my sisters.
I was on a 10 lb weight restriction, but that is just a general suggestion by the doctors. 10 lb for an 80 year old woman with osteoporosis is a lot different strain than for a 39 year old highly trained athlete (If you are not sure, I was talking about myself right there). Regardless, you just do not want to strain yourself, or do a valsalva. That would increase intracranial pressure, and my dura, skull, and skin (maybe missing a few layers of tissue there) would be stressed.
Patient tip #2: understand, and then just follow the spirit of physicians’ recommendations.
I quickly learned what was too much for me. If I pushed it too far, I would have a head fullness and an unnerving gurgling sensation in my skull. With time, that fullness and gurgling took more than walking, and I felt good enough to walk / run, even do a push-up or two, and ride a stationary bike. And I would push it too far, testing the limit, and find myself with a migraine the next day and needing to restart my recovery at a slower pace the following day.
The weeks after surgery developed a strange normalcy, a strange routine. I was instructed not to drive, so would drop off kids (with Staci), go to the grocery store (with Staci), return some things (with Staci), and take a nap (okay, that was with Mia). We really became inseparable out of habit, emotional need, and basic necessity. I was good for ‘watching’ Mia while we both slept, and Staci could have a break from me to do errands. I was a good mom assistant. I would not say great since she did not let me lift more than 10 lb despite my insistence that I was following the spirit of the recommendations. Credit Staci for making my contributions at home seem helpful.
Figure: Helping out with loading the dishwasher and opening the mail. On the right, getting up too early from our nap and waiting for Mom.
After a glioblastoma multiforme resection, generally the patient will get 3 – 6 weeks to recover prior to starting chemotherapy and radiation. The chemotherapy is a pill with temozolomide and the radiation is 5 days a week for 6 weeks. This is the Stupp protocol. Again, as I looked this up on Google, I was reminded why I do not look this stuff up. The study that proved the the combination regimen of chemo and XRT was more effective than radiation alone. This was published in the New England Journal of Medicine in 2005 (Stupp was lead author, so he gets the protocol named after him). Median survival increased to 14 months in the combination group vs 12 months in radiation only. The first sentence of the abstract: “Glioblastoma, the most common primary brain tumor in adults, is usually rapidly fatal.” Umm, everyone who is reading primary literature is fully aware of the problem at hand. I guess I can take solace in the adverb ‘usually.’ At least now, 2 months into this thing, I can read that and think I’m not anything usual, I am my own statistic, I am an outlier, and newer treatments are available. Also, every trial has a Table 1 which is baseline characteristics of patients entering trial. So my eyes race to Table 1 and try to figure out why I am way better than most of the patients in the trial. This Stupp protocol was published in 2005, based on data from years prior.
Patient tip #3: use google judiciously for medical knowledge. If you ask a leading question, you will get a leading answer. For example, best to ask google about long term survivors of GBM, not average survival.
I was determined not to just ‘recover’’ but to improve my functional status, to keep myself better than the average on Table 1. Where I used to measure myself in minutes per mile, or 100 yard freestyle off the wall, I now had Karnofsky score or Eastern Cooperative Oncology Group (ECOG). They are both a way to express how well a patient is doing with cancer. It helps the clinician decide appropriate treatment. ECOG score goes 0 – 5. 0 is fully active, able to carry on all pre-disease performance. A 3 is capable of only limited selfceare, confined to a bed or chair > 50% of waking hours. 5 is a total bummer because you are dead. Karnofsky score is similar, runs from 100 (normal) to 0 dead in increments of 10. I scored myself in my head.
The first week or so, I was still on steroids. I liked where I was at. I liked who I was with. I kept repeating that I had lived a pretty full life in 40 years, much to the horror of Staci. As the steroids wore off, I came down from that high, we had to make plans for the future without me so we could then focus on how to keep me. Finding old paperwork on disability, wondering if I would need it. Life insurance. Retirement. College tuition. Heck, I was still paying for my own med school loans. Those are very challenging to get out of. You can restructure your payment plan, consolidate, defer. On the last line, it bluntly states to get out of loans, an option is dying. Seriously. I plan to pay those back slowly.
We had to make plan B so we could focus on Plan A (long term survivor). This was a depressing process. Every step reminded me of a future with my absence. I mourned for me, sometimes so often during the day that it was blocking out all the positives: surgery went well, I was feeling better most days, we had a good safety net. We had to get through planning for the worst to focus on the best. Staci told me one night in bed she just could not go on thinking about my absence every day. So we don’t. I feel good today. And speaking of Staci and bed, I have had quite a bit of feedback on my previous comments about watching Staci over my book at night while she changes into her pajamas. Now that she knows, she has been more discrete. I plan to write more about that, but need to set up a pay wall. For $5 a month, my ‘gray members’ can have full access. Stay tuned. My parents and in-laws cannot pay enough. Nor do I think they would want to — somethings mothers have a right not to know. And my nieces Anna and Kathryn have subscribed to the blog. Or maybe I will just publish that stuff after the one craft beer my neurooncologist okayed each night.
Patient tip #4: intimacy is part of the normal healing process. Yes, you can!
I am not sure how universal this is with cancer. I call it my dark space. For me, it is a figurative and literal place. I have a dark spot in my brain (on MRI), and it was touching all of my thoughts. I was peering into that abyss. Or maybe sadness from Inside Out would be a better analogy where every thought is touched by her. Even sitting back at work meetings and hearing about EPIC, I wondered if it will be applicable to me. Goals for next year? Will I even be able to return to work? With my current state, certainly, but I have only gone back for scattered meetings at this point. But I never had a murkier 6 month plan than the current state.
Here is my abyss so it can be purged just like the stomach contents from my kids last week. Will I see Allison at a high school swim meet? Connor at a high school soccer game, scoring with his left foot? Will I just be fragments in Ella’s memory and a non-presence for Mia? And here it is where it is physically painful. I am 39, Staci 38. There are long-term survivors, but to get that label you only need to make it for 5 – 10 years. There are even anecdotes of people living beyond 10 years. I am on therapy that was not available until recently. I am otherwise in good shape (Karnofsky score 110 if I say so myself). But those are long odds, and I am a realist. So I think about a void that I will leave in my home, at work, at the playground watching kids and grandkids, and in our bed. I can offer everything except longevity. After dwelling on this for a few weeks, I am mostly over it, or at least thinking about it less. Tai Duncan offered memorable advice: “you can avoid all that by surviving.” It just does not serve any purpose while I’m here. I truly want Staci to be happy in the future while she spends her days in a convent serving the poor. No, but I honestly want her to be happy (whatever that entails), and for now, I want to be the reason for it. But I still have some trigger words. Trust me, I am not sensitive to cancer talk and dying. My friend Seth Blumberg sent me a very dark Onion article on a patient that did not ‘fight’ cancer like we are all supposed to. I loved how it just twisted all the themes you hear with unrelenting cruelty. That was funny. My triggers for looking into the abyss are unpredictable. A neighbor was discussing how her mother and step dad would watch her kids after school, and all I could think of was Staci and ‘step dad.’ Or another friendly male was talking to Staci at a party, and I sort of butt in with ‘are you married?’ He was, so I excused myself from the conversation. Anyway, do not be afraid to be a trigger because you cannot help it. It can be anything, but I’m better now as I focus on Plan A.
Next up on the blog: Radiation (XRT) and chemotherapy with infusions of hope q 3 weeks starting 12/7/15. Maybe some side effects, gradual improvements, holidays. I need to start catching up to the present.
Figure: pill packets are a must. My simple regimen between surgery and chemo / XRT was just Keppra twice a day. Impossible to keep straight. On the right, radiation preview. Need to keep that head still!