I feel as if I’ve squandered away the past week. I completely bowed down to the tremendous anxiety and stress that today’s looming PET Scan was causing me. And after all of that fretting, my oncologist and I decided to postpone the scan – as well as my appointment with the transplant team – until next week. I contracted some kind of cold/flu and we do not want to risk a false positive reading on my scan results.
Whether I picked up a germy somewhere or I got myself sick with stress, I came down with a whopping sore throat, chills, feveryness, aches and tremendous fatigue this past weekend. I convinced myself that it was DoomsDay. I worried and worried and worried andworried about all the scenarios:
Conclusion A: I’d never recover from the virus I’d contracted and it would find a way to eat me alive
Conclusion B: Hodgkin’s Disease was flaring on the rise, for sure, so fast that my new immune system would never be able to catch it
Conclusion C: I re-broke my foot, as it was so achey, along with the rest of me. A piece of bone must have dislodged and was floating through me ready to nest in my brain and cause me to hemorrhage (so obvious)
All of these scenarios were evils that I manifested then couldn’t handle comprehending. I completely lost control and surrendered, basically digging myself a grave these past few days. I conceded defeat and moaned and groaned the days away just wishing I could get to today to have my damn PET Scan that would seal my fate. That is not like me, and I hated it.
I could do nothing but pace around the house like an angry troll. I think I may have worn down the floorboards with all of my aimless wandering. I slept more than half the day away counting the hours until Craig came home. I was weepy at everything. I did a lot of “tinkering”: starting projects, moving things around, but ultimately not able to follow through with even the smallest of tasks. I was so tired and so flushed. The idea of even emptying the dishwasher was enough to send me into a tizzy. It is a very good thing that I have a patient, aware, and experienced husband and dog that kept me going.
Overall, I was very sad. I felt so good the week prior and had been so positive about the encouraging strides I was taking that I could not handle the setback. I could not handle the anxiety and the anticipation of what today’s scan would reveal, nor the anxiety surrounding why I wasn’t feeling well. I’d wake Craig up in the middle of the night crying and telling him how kind he was and how much he means to me.
But you know what? I’m not dying right now. I had a cold with a sore throat. A cold. It’s now five days after the symptoms started and my throat doesn’t hurt a bit, my energy level is on the rise, and I’m walking on my foot without any type of cast with only a little swelling, no pain. I no longer feel fevery and my tight chest has opened up again.
Now I’ve learned that even transplant patients get a common cold – and an even more important lesson, we can recover from it with rest and fluids and a little anti-viral Tamiflu prescription just like a regular person. Could this mean that I’m a regular person? I’m so used to hearing incredibly grave news that it’s strange to me to think that being sick could be just that, being sick. Not that the cancer is back. Not that I’m dying.
Since transplant, my confidence has taken a big shot. I get very afraid of a lot of things, an emotion that I am not accustomed to. I’ve always been pretty fearless and even going through much of my initial cancer treatment, I spat in its face. But now, the fear of recurrence is not as easy of a beast to tame. It roars and spits right back at me. If the cancer relapses now, I don’t have many viable options. In the past I always had the autologous transplant in my back pocket. Then I knew that if that failed, I still had the allogeneic transplant card to pull. Now, I’m just dangling on hope that this is forever successful.
I get a stomach cramp from eating too much cheese and I immediately think it’s Graft vs. Host Disease attacking my intestines cell by cell. I cough and I think the lymphoma is gripping my sternum again. I have a gas bubble in my chest and think that my heart is giving out. Obviously, I tend to jump to extremes. But I can’t blame myself, I’ve been living in nothing but extreme conditions for the past two years. I’m not used to these common ailments.
Like Dr. Sauter, I need good data. I need some reassurance that things are looking clean and bright inside. Neither one of us wanted to chance some residual chest cold inflammation showing up that could contaminate my results. PET Scans are finicky enough without the complications of a viral infection. So, I will wait another week. Yes, that means another week of anxiety, but that is far less threatening than mulling over a suspicious hot spot that’s nothing more than my lymphatic system doing what it’s supposed to do: attack viruses.
The scan delay actually alleviates a huge weight. I’m the one who called the clinic yesterday and questioned whether it was wise to get scanned today. My desire to have an accurate scan outweighed my desire to get it over with. I knew Dr. Sauter would agree with my concern. I even got out of traveling to Sloan-Kettering for a visit. Instead, I only had to get bloodwork locally today. My counts look fantastic and all blood types continue to soar into normal range.
I decided when I woke up this morning that I will not let the worry overtake me anymore. Five wasted days is too many days. And maybe they weren’t wasted, maybe I needed that rest and that zombie period to get to where I am today. I suppose bad days are important too; it helps me to realize how good my good days are becoming.
On Halloween I’ll be back to work full-time from home and will be gearing up to start graduate school to pursue my MFA in Creative Nonfiction Writing. These pursuits will no doubt help me refocus my life on what I want it to be and regain my confidence and control. I’m still straddling the gap between patient and survivor and look forward to being able to let go and come to terms with all of this.
It’ll be refreshing to fill my days with meaningful, fulfilling projects and stimulation rather than doctor’s appointments, drugs, needles, and incessant medical logistics. I’ve got to move on with living my life. I can’t just wait around for something bad to happen. It’s damn time for some good things to happen in my life. No more wallowing around: If I don’t stop that gig soon, I’ll make myself certifiably crazy.
I did not go through the trauma that I’ve gone through so that I could shrivel up at the first signs of struggle. Things are a little harder for me these days, but with each new accomplishment, the award is that much sweeter. I just need to rekindle that drive and motivation and not let the fear get the best of me. I know in my heart that I am fully capable of anything I set my mind to, it’s just a matter of taking that first really scary step. This week’s accomplishment? I was sick, and then I got better, and then I went on a fall walk on both feet with my dog.
In the words of my man, Ray:
"Worry ... worry, worry, worry, worry. Worry just will not seem to leave my mind alone/ Trouble ... trouble, trouble, trouble, trouble. Seems like every time I get back on my feet she come knock me down again/ Worry. Oh, worry, worry, worry, worry. Sometimes I swear it feels like this worry is my only friend."