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The rollercoaster ride of Recovering From Major Illness continues. Last Friday was Hell Day. It turned out to be Not So Bad Day. The tests, that a year ago were painful, exhausting, and debilitating, were, this time round, not so bad. It’s a reminder of how sick I was a year ago, that just lying on a bed and having an EKG (a very quick and easy procedure) was torture. The worst part of the day was the bone marrow biopsy. They had to do it twice, because the first one didn’t get enough of a sample. Oh science, please hurry up and find a gentler method of testing marrow!
The bone marrow biopsy left me in a lot of pain, right down to my tailbone, so that even sitting hurt. The next few days were less than fun. I had a constant dull ache in the back of my head, reflux, and I was permanently tired. A delightful combination for my incredibly patient, and loving husband.
On Tuesday, I felt ok enough to get in one last run before the 5km this Saturday. It was meant to be easy, running for only eight minutes out of twenty. It slayed me. By the evening, I was Done. The headache hadn’t really gone away. I was puffed from short bursts of walking. I was exhausted. I called my doctor and she said my platelets had been low on Friday, and to go for blood work on Wednesday morning.
Then came The Crash. My anxiety brain went into panic mode. Your counts are low! You feel like you did before you were diagnosed! IT’s back! You’re going to be dead at 31! DOOOM!!! I had a total meltdown and would probably still be fetal under a blanket if Aaron hadn’t made me just go to the Brooklyn Infusion Center and have my blood work done.
Today, I feel better. We still don’t have results from last week, or yesterday (it can take a little while), but I’m not in Oh-God-My-Death-Is-Imminent mode. I have amazing, patient, and loving people around me. We had dumplings for dinner AND breakfast. I'm getting paid to watch some cool theatre. The sky is blue again, I’m running in my first NYC race on Saturday, and I’m Ok!
UPDATE: Literally moments after posting this entry, I got a call from my doctor. I can't run, or even walk, the 5km on Saturday as my counts have dropped too low. She thinks the drop has been caused by one of my meds, so I'm stopping it for the time being. See photo above for my feelings right now! FAARKING CANCER!!!
UPDATE TWO: Also found out that the bone marrow biopsy results came back negative, so I'm all clear and still in remission. Yay! I'm still ok!
The bone marrow biopsy left me in a lot of pain, right down to my tailbone, so that even sitting hurt. The next few days were less than fun. I had a constant dull ache in the back of my head, reflux, and I was permanently tired. A delightful combination for my incredibly patient, and loving husband.
On Tuesday, I felt ok enough to get in one last run before the 5km this Saturday. It was meant to be easy, running for only eight minutes out of twenty. It slayed me. By the evening, I was Done. The headache hadn’t really gone away. I was puffed from short bursts of walking. I was exhausted. I called my doctor and she said my platelets had been low on Friday, and to go for blood work on Wednesday morning.
Then came The Crash. My anxiety brain went into panic mode. Your counts are low! You feel like you did before you were diagnosed! IT’s back! You’re going to be dead at 31! DOOOM!!! I had a total meltdown and would probably still be fetal under a blanket if Aaron hadn’t made me just go to the Brooklyn Infusion Center and have my blood work done.
Today, I feel better. We still don’t have results from last week, or yesterday (it can take a little while), but I’m not in Oh-God-My-Death-Is-Imminent mode. I have amazing, patient, and loving people around me. We had dumplings for dinner AND breakfast. I'm getting paid to watch some cool theatre. The sky is blue again, I’m running in my first NYC race on Saturday, and I’m Ok!
UPDATE: Literally moments after posting this entry, I got a call from my doctor. I can't run, or even walk, the 5km on Saturday as my counts have dropped too low. She thinks the drop has been caused by one of my meds, so I'm stopping it for the time being. See photo above for my feelings right now! FAARKING CANCER!!!
UPDATE TWO: Also found out that the bone marrow biopsy results came back negative, so I'm all clear and still in remission. Yay! I'm still ok!
- Published on
"Light Rollercoaster" by Kaszimera on DeviantArt
Since my last post I turned 31, and made a trip to Australia to say goodbye to my grandmother. It has been another rollercoaster of a month, utter joy mixed with profound sorrow, wonderful highs, and tricky-to-navigate lows.
Time to Say Goodbye
When I left Australia in 2011, I had no idea when I would be back and I consciously came to terms with the notion that I would miss out on the milestones and events of people I loved. I knew I would miss out on weddings, births, graduations, and celebrations. Part of moving overseas was understanding that I wouldn’t be able to say goodbye to people, particularly elderly relatives, before they passed away.
Long before cancer reared its ugly head, I had made peace with the fact that I wouldn’t be able to say goodbye to my Abuela in person. Despite this, when we learnt that Abuela was dying, I was devastated that stupid cancer meant I couldn’t travel. At every check up I asked my doctor if it was ok for me to travel. The definitive answer was always “Sweetheart, are you kidding?! You have no immune system!” The risk of my suppressed immune system fighting who-knows-what germs on a long-haul flight, not to mention the effects of that flight, and jet lag, on my weary body were too high.
Two days before my birthday, I had my six weekly check up. As always, I asked, just-in-case-the-answer-had-changed, if I could visit Abuela. My doctor cocked her head, looked at me through narrowed eyes, and said, “Alright. I think you can go.”
Huh?! I went into a state of shock and left the hospital not knowing what to do or who to call. Did I even want to make the trip? Was I up for it? What if I got sick in Australia? Would they stop me from coming back?
After much discussion with Aaron, and a few days umm-ing and aah-ing, I decided I would regret it if I didn’t go. My dad booked my ticket, and a day later, I was on a jet plane bound for Australia.
As I had made peace with the fact that I couldn’t go, being able to fly home felt like an enormous privilege. It was truly an honor to be able to sit with Abuela in her last few days. She was conscious enough to know I was there, and she smiled, and cried, when I first came into the room. I sat with her and stroked her hair, held her hand, listened to music with her, and told her how much I loved her. Most of our family were with her when she passed away, peacefully and quietly. It was sad, and lovely, and special. We decided to wait a week for the funeral, as my aunt needed to fly in from England.
In the time in-between I caught up with friends and family, and finally got to sorting out all my crap in storage. Most of it has been in storage since my first trip in 2008. I couldn’t believe how much stuff there was, and I was furious at Old Me for hoarding so much! It took three days to sort through it all, and more than once I wanted to just light a bonfire and Burn Everything. It was physically and emotionally exhausting. The stuff was all remnants of a time that now feels like a lifetime ago. Saying goodbye to it all was liberating.
Workin’ 9 to 5 (almost)
Upon returning home to NYC, I went straight into work. I haven’t worked in over a year, and getting back to being employed is a huge step. I started ushering at the Brooklyn Academy of Music (getting paid to watch theatre, for the win!), and I’m also doing some temping (getting paid to write, for the win!).
I’m only working part-time at this point, as I’m still not quite physically ready to return to full-time work, but oh my it feels so good to be earning some income again! Being around people, having a purpose, being useful, and using my skills. It feels GREAT.
Run Lulu, Run!
Even with jet lag, I managed a few runs in Sydney. The difference between Sydney and New York? New York is FLAT. Sydney is HILLY. Yikes. It hurt! But I did it.
With the effects of flying, and the adrenalin of being able to travel, wearing off, my body is exhausted. The runs in the past couple of weeks have been HARD. I had the realization that I’m probably not going to be able to run the full 5km on the 31st of October, which was utterly crushing.
Effing cancer. I used to run 5km three times a week for fun, and now I just Can’t. At this stage, I’ll be able to run most of it, but not all of it. As my trainer needed to remind me, “You have made amazing progress! You have overcome fatigue, mood swings, loss, grief, overseas travel, and jet lag. Wow!”
Next Up
In just under two weeks, I’ll be heading to Sloan for Hell Day. Bone density scan, EKG, echocardiogram, pulmonary function test, blood work, and a bone marrow biopsy all in one day. How do you spell FUN?! All the survivor fears of relapse, secondary cancer, and I’m-probably-going-to-die-young have reared their heads, and bought with them depression, anxiety, and reflux. Cancer, you suck.
So there you have it. I feel great. I feel depressed. I feel grateful to be alive. Some days it’s a struggle to get out of bed. It’s all part and parcel of this process called Recovery. What a ride it is.
Time to Say Goodbye
When I left Australia in 2011, I had no idea when I would be back and I consciously came to terms with the notion that I would miss out on the milestones and events of people I loved. I knew I would miss out on weddings, births, graduations, and celebrations. Part of moving overseas was understanding that I wouldn’t be able to say goodbye to people, particularly elderly relatives, before they passed away.
Long before cancer reared its ugly head, I had made peace with the fact that I wouldn’t be able to say goodbye to my Abuela in person. Despite this, when we learnt that Abuela was dying, I was devastated that stupid cancer meant I couldn’t travel. At every check up I asked my doctor if it was ok for me to travel. The definitive answer was always “Sweetheart, are you kidding?! You have no immune system!” The risk of my suppressed immune system fighting who-knows-what germs on a long-haul flight, not to mention the effects of that flight, and jet lag, on my weary body were too high.
Two days before my birthday, I had my six weekly check up. As always, I asked, just-in-case-the-answer-had-changed, if I could visit Abuela. My doctor cocked her head, looked at me through narrowed eyes, and said, “Alright. I think you can go.”
Huh?! I went into a state of shock and left the hospital not knowing what to do or who to call. Did I even want to make the trip? Was I up for it? What if I got sick in Australia? Would they stop me from coming back?
After much discussion with Aaron, and a few days umm-ing and aah-ing, I decided I would regret it if I didn’t go. My dad booked my ticket, and a day later, I was on a jet plane bound for Australia.
As I had made peace with the fact that I couldn’t go, being able to fly home felt like an enormous privilege. It was truly an honor to be able to sit with Abuela in her last few days. She was conscious enough to know I was there, and she smiled, and cried, when I first came into the room. I sat with her and stroked her hair, held her hand, listened to music with her, and told her how much I loved her. Most of our family were with her when she passed away, peacefully and quietly. It was sad, and lovely, and special. We decided to wait a week for the funeral, as my aunt needed to fly in from England.
In the time in-between I caught up with friends and family, and finally got to sorting out all my crap in storage. Most of it has been in storage since my first trip in 2008. I couldn’t believe how much stuff there was, and I was furious at Old Me for hoarding so much! It took three days to sort through it all, and more than once I wanted to just light a bonfire and Burn Everything. It was physically and emotionally exhausting. The stuff was all remnants of a time that now feels like a lifetime ago. Saying goodbye to it all was liberating.
Workin’ 9 to 5 (almost)
Upon returning home to NYC, I went straight into work. I haven’t worked in over a year, and getting back to being employed is a huge step. I started ushering at the Brooklyn Academy of Music (getting paid to watch theatre, for the win!), and I’m also doing some temping (getting paid to write, for the win!).
I’m only working part-time at this point, as I’m still not quite physically ready to return to full-time work, but oh my it feels so good to be earning some income again! Being around people, having a purpose, being useful, and using my skills. It feels GREAT.
Run Lulu, Run!
Even with jet lag, I managed a few runs in Sydney. The difference between Sydney and New York? New York is FLAT. Sydney is HILLY. Yikes. It hurt! But I did it.
With the effects of flying, and the adrenalin of being able to travel, wearing off, my body is exhausted. The runs in the past couple of weeks have been HARD. I had the realization that I’m probably not going to be able to run the full 5km on the 31st of October, which was utterly crushing.
Effing cancer. I used to run 5km three times a week for fun, and now I just Can’t. At this stage, I’ll be able to run most of it, but not all of it. As my trainer needed to remind me, “You have made amazing progress! You have overcome fatigue, mood swings, loss, grief, overseas travel, and jet lag. Wow!”
Next Up
In just under two weeks, I’ll be heading to Sloan for Hell Day. Bone density scan, EKG, echocardiogram, pulmonary function test, blood work, and a bone marrow biopsy all in one day. How do you spell FUN?! All the survivor fears of relapse, secondary cancer, and I’m-probably-going-to-die-young have reared their heads, and bought with them depression, anxiety, and reflux. Cancer, you suck.
So there you have it. I feel great. I feel depressed. I feel grateful to be alive. Some days it’s a struggle to get out of bed. It’s all part and parcel of this process called Recovery. What a ride it is.