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Scanxiety ("scan-zi-etee")
Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination"
Remember that scene in Kindergarten Cop where Arnie says, "I have a headache," and the kids say, "Maybe it's a tumor..." and Arnie replies, "It is not a toomah!" That is the conversation in my head right now.
When I sit for too long on any chair that isn't my couch, I develop an awful pain right down in the base of my tailbone. It makes moving to a standing position incredibly painful. Once I'm standing again, the pain subsides.
My doctor thinks it could be a fractured sacrum, except we have no idea what could have caused it (apart from the fact that the treatment for AML has left me at higher risk for bone damage). All I know is that the pain started after the bone marrow biopsy in October.
Tomorrow I'm having an MRI to determine what's causing the pain. According to the hospital Information Sheet, the MRI will be conducted with contrast dye, in order to "be able to better see any traces of disease".
Basically I'm going to be spending the next 24 hours dealing with scanxiety and repeating to myself in mantra-like fashion: IT IS NOT A TUMOR.
When I sit for too long on any chair that isn't my couch, I develop an awful pain right down in the base of my tailbone. It makes moving to a standing position incredibly painful. Once I'm standing again, the pain subsides.
My doctor thinks it could be a fractured sacrum, except we have no idea what could have caused it (apart from the fact that the treatment for AML has left me at higher risk for bone damage). All I know is that the pain started after the bone marrow biopsy in October.
Tomorrow I'm having an MRI to determine what's causing the pain. According to the hospital Information Sheet, the MRI will be conducted with contrast dye, in order to "be able to better see any traces of disease".
Basically I'm going to be spending the next 24 hours dealing with scanxiety and repeating to myself in mantra-like fashion: IT IS NOT A TUMOR.
I will meditate. I will listed to show tunes (Hamilton is currently on high rotation). I will eat chocolate. I will read Ali Smith. I will get past this MRI. And maybe the day after tomorrow is the day I can start being "normal" again and everything will be ok.
IT IS NOT A TUMOR.
IT IS NOT A TUMOR.
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The hemoglobin goblin is still here. I had to have another bone marrow biopsy today. My doctor did it herself. At the end, she clutched the bio-bag containing a vial of my blood and said, "I don't know what other tests to run. I want to hold on to this in case I think of something." Inspiring, no? My wonderful nurse practitioner sat with me afterwards while I sobbed. Stupid hemoglobin goblin. I thought I told you to be gone?
Tonight I got to do something fun, and totally out of character: wear designer clothes! Despite the lidocaine still coursing through my system, and my back aching like hell, I decided to go through with attending a special event for CancerCare - a shopping night at the Soho boutique, Nicole Miller. Along with three other survivors, I was there to talk about my experience with cancer, and how CancerCare had helped me.
To start the evening, we were taken to NARS Cosmetics and had our make-up professionally done. The make-up artists were so lovely, starting off the session with face massages and making us feel utterly pampered and special.
Back at the boutique, the staff of Nicole Miller helped us pick out outfits and personally attended to each of us. It was so much fun to wear a dress I would never ever even think about trying on because it costs almost half my month's rent!
The guests arrived, and after some light refreshments and shopping, the four survivors told our stories about how CancerCare had helped us.
No matter how many cancer stories I hear, the thing that always gets me is how goddamn awful this disease is. It doesn't matter what kind of cancer it is, how long ago the treatment finished, or how great your support system is, cancer effing sucks.
Tonight I was pampered and made to feel incredibly special. It was truly lovely, and a great way to ignore the goblin for a couple of hours.
Thank you to utterly lovely staff at Nicole Miller, NARS Cosmetics, and CancerCare for making the evening possible!
Tonight I got to do something fun, and totally out of character: wear designer clothes! Despite the lidocaine still coursing through my system, and my back aching like hell, I decided to go through with attending a special event for CancerCare - a shopping night at the Soho boutique, Nicole Miller. Along with three other survivors, I was there to talk about my experience with cancer, and how CancerCare had helped me.
To start the evening, we were taken to NARS Cosmetics and had our make-up professionally done. The make-up artists were so lovely, starting off the session with face massages and making us feel utterly pampered and special.
Back at the boutique, the staff of Nicole Miller helped us pick out outfits and personally attended to each of us. It was so much fun to wear a dress I would never ever even think about trying on because it costs almost half my month's rent!
The guests arrived, and after some light refreshments and shopping, the four survivors told our stories about how CancerCare had helped us.
No matter how many cancer stories I hear, the thing that always gets me is how goddamn awful this disease is. It doesn't matter what kind of cancer it is, how long ago the treatment finished, or how great your support system is, cancer effing sucks.
Tonight I was pampered and made to feel incredibly special. It was truly lovely, and a great way to ignore the goblin for a couple of hours.
Thank you to utterly lovely staff at Nicole Miller, NARS Cosmetics, and CancerCare for making the evening possible!
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Something is messing with my blood. My medical team are not exactly sure what it is. So, for the time being, I've decided it's a goblin -- because it's a gobblin' my hemaglobin, and that sounds more fun than "cancer".
Those of you following along for the past few weeks will know that my counts have jumping up and down like a yo-yo. It started after my one-year-post-transplant check-up — I couldn’t seem to recover from the day of tests. I was constantly tired, headachey, and puffed out from shorts bursts of walking, and as a result I had to drop out of the 5km run which I’d spent 12 weeks training for.
My blood work showed that my hemoglobin (an important component of red blood cells), levels were dropping. My doctor thought it was caused by one of the drugs I was on, and took me off the drug. To keep an eye on the counts, I had to go back to having weekly blood tests.
Four weeks after stopping the suspected culprit, my counts are still dropping. This afternoon my lovely nurse practitioner called to let me know that this week’s results were low enough that I’ll need another bone marrow biopsy on Monday, and possibly a transfusion. My doctor is not too concerned about a relapse at this point, given that my last biopsy was only a month ago and came back completely clean, but she’s not exactly sure why I’ve stopped producing hemoglobin.
Monday will be my 11th bone marrow biopsy in 16 months. I still have pain from the last one - whenever I sit for too long I get a sharp and uncomfortable pain in my tailbone. It’s alleviated by standing and walking, but, thanks to the low hemoglobin counts, I get tired from too much movement. It’s a fun game of balancing pain and fatigue.
Thankfully it hasn’t been too debilitating. I’m not bed-ridden, and I’ve even managed a few days of work this week! It's just frustrating to be feeling exhausted and headachey all the time.
I’m hoping my medical team are able to figure out what’s causing this current dip from the biopsy. In the meantime, hemoglobin goblin, be gone!
Those of you following along for the past few weeks will know that my counts have jumping up and down like a yo-yo. It started after my one-year-post-transplant check-up — I couldn’t seem to recover from the day of tests. I was constantly tired, headachey, and puffed out from shorts bursts of walking, and as a result I had to drop out of the 5km run which I’d spent 12 weeks training for.
My blood work showed that my hemoglobin (an important component of red blood cells), levels were dropping. My doctor thought it was caused by one of the drugs I was on, and took me off the drug. To keep an eye on the counts, I had to go back to having weekly blood tests.
Four weeks after stopping the suspected culprit, my counts are still dropping. This afternoon my lovely nurse practitioner called to let me know that this week’s results were low enough that I’ll need another bone marrow biopsy on Monday, and possibly a transfusion. My doctor is not too concerned about a relapse at this point, given that my last biopsy was only a month ago and came back completely clean, but she’s not exactly sure why I’ve stopped producing hemoglobin.
Monday will be my 11th bone marrow biopsy in 16 months. I still have pain from the last one - whenever I sit for too long I get a sharp and uncomfortable pain in my tailbone. It’s alleviated by standing and walking, but, thanks to the low hemoglobin counts, I get tired from too much movement. It’s a fun game of balancing pain and fatigue.
Thankfully it hasn’t been too debilitating. I’m not bed-ridden, and I’ve even managed a few days of work this week! It's just frustrating to be feeling exhausted and headachey all the time.
I’m hoping my medical team are able to figure out what’s causing this current dip from the biopsy. In the meantime, hemoglobin goblin, be gone!
- Published on
I am fed up. A year post-transplant, I’m still dealing with aches and pains, fatigue, counts dipping, and wondering when I’m ever going to feel “normal” again. I’m fed up with articles proclaiming This Food Will Give You Cancer. I'm fed up with articles claiming preventatives and cures for cancer through diet. As someone who took care of herself, ate a mostly vegetarian diet, exercised, meditated, and STILL got cancer, all of these articles make me crazy.
Like most living creatures, I love to eat, and I take great pleasure in preparing and consuming food. If this past year has taught me anything, it’s that life is too short to obsessively try and avoid things that might, or might not, give you cancer. I believe in eating a balanced diet, and beyond that… Enjoy food! Enjoy life!
Despite all this, I still believe in food's healing and restorative power. In the past week, I’ve had three meals to remind me of this fact.
1. Jewish Penicillin
After coming down with a cold, our lovely friend Paula made a giant batch of “Jewish penicillin,” chicken broth cooked over 18 hours. I’m telling you now, that stuff has magic powers. All I know is, my counts were low on Friday (low enough for my doctor to order a transfusion and another bone marrow biopsy for the following Monday), and after two bowls of delicious, flavorful broth (with some veggies and noodles thrown in), my counts were heading back towards normal. Magic.
2. Thanksgiving Test Run
The aforementioned Paula, and her husband Neil, (whom we may not have gotten to know if it weren’t for this whole cancer thing) invited us around for a “test turkey” in preparation for Thanksgiving. It also happened to be the anniversary of coming home from hospital after the transplant, which felt even more significant than the anniversary of being diagnosed, or the transplant itself, because, Hey! I’ve survived a whole year!!!
We dined on a gorgeous turkey with homemade cranberry sauce and gravy, roast veggies with homegrown rosemary, and to polish it all off, homemade chocolate ice cream. With candles on the table, wonderful company, and delicious food cooked with love and care, it was the perfect way to celebrate one year out of hospital.
3. Fancy Dumplings
After learning that my counts were high enough to not need a transfusion or a bone marrow biopsy, Aaron surprised me with a Monday lunch date. We went to Red Farm, a fancy dim sum restaurant on the upper west side, and oh the food we ate! Skewers with duck, grilled lychees, and fried lotus; assorted “pac man” dumplings served with a tempura sweet potato on a bed of guac; lamb dumplings with miso, apple and tabasco shots; and the soupiest soup dumplings I’ve ever had. I’m drooling just thinking about it all. Grilled lychees, where have you been all my life?!
Like most living creatures, I love to eat, and I take great pleasure in preparing and consuming food. If this past year has taught me anything, it’s that life is too short to obsessively try and avoid things that might, or might not, give you cancer. I believe in eating a balanced diet, and beyond that… Enjoy food! Enjoy life!
Despite all this, I still believe in food's healing and restorative power. In the past week, I’ve had three meals to remind me of this fact.
1. Jewish Penicillin
After coming down with a cold, our lovely friend Paula made a giant batch of “Jewish penicillin,” chicken broth cooked over 18 hours. I’m telling you now, that stuff has magic powers. All I know is, my counts were low on Friday (low enough for my doctor to order a transfusion and another bone marrow biopsy for the following Monday), and after two bowls of delicious, flavorful broth (with some veggies and noodles thrown in), my counts were heading back towards normal. Magic.
2. Thanksgiving Test Run
The aforementioned Paula, and her husband Neil, (whom we may not have gotten to know if it weren’t for this whole cancer thing) invited us around for a “test turkey” in preparation for Thanksgiving. It also happened to be the anniversary of coming home from hospital after the transplant, which felt even more significant than the anniversary of being diagnosed, or the transplant itself, because, Hey! I’ve survived a whole year!!!
We dined on a gorgeous turkey with homemade cranberry sauce and gravy, roast veggies with homegrown rosemary, and to polish it all off, homemade chocolate ice cream. With candles on the table, wonderful company, and delicious food cooked with love and care, it was the perfect way to celebrate one year out of hospital.
3. Fancy Dumplings
After learning that my counts were high enough to not need a transfusion or a bone marrow biopsy, Aaron surprised me with a Monday lunch date. We went to Red Farm, a fancy dim sum restaurant on the upper west side, and oh the food we ate! Skewers with duck, grilled lychees, and fried lotus; assorted “pac man” dumplings served with a tempura sweet potato on a bed of guac; lamb dumplings with miso, apple and tabasco shots; and the soupiest soup dumplings I’ve ever had. I’m drooling just thinking about it all. Grilled lychees, where have you been all my life?!
So, I’m fed up, but at least I’m well fed. Bring on Thanksgiving and the festive season, I’m ready to eat and celebrate surviving a whole year on this crazy trip!
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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!
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"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.
- Published on
"Tell them how I am defying leukemia!" Elphaba has been watching over me in more ways than one.
Today I had my first hospital appointment in six weeks. Since July last year, this is the longest I have gone without being poked, prodded, and analyzed by my medical team. It feels amazing.
My transplant doctor is a force of nature. She is no-nonsense, utterly formidable, and surrounded by an amazing team (of predominantly women) whom I adore. Not because she is in any way evil, but because of the magnificence she exudes, I always picture my doctor walking down the hospital corridors to the theme song of the Wicked Witch of the West. I have grown incredibly fond of my doctor. If I knew she weren't so busy saving lives, I would ask her over dinner to pick her brains about everything she knows.
My doctor is happy with my counts and progress. My no-nonsense, utterly formidable, but truly amazing doctor even got a tad shiny eyed when I told her that, for the first time since this whole AML malarkey began, I am starting to feel more like myself. My energy is returning, I'm running, and I've started working again.
It felt so good to be able to go through the checklist and finally say no:
Have you experienced nausea?
Are you experiencing headaches?
Are you experiencing neuropathy?
Are you having trouble sleeping?
My next appointment will be towards the end of October when they do the one year post-transplant tests. That's going to be a really fun day.*
*It's probably not going to be fun. A full day of hospital tests including, but not limited to, a bone marrow biopsy, bone density scan, full blood work, pulmonary function test, EKG... I'm probably going to need a double serve of gyoza, and a nice big bowl of ice cream, at the end of that day!
My transplant doctor is a force of nature. She is no-nonsense, utterly formidable, and surrounded by an amazing team (of predominantly women) whom I adore. Not because she is in any way evil, but because of the magnificence she exudes, I always picture my doctor walking down the hospital corridors to the theme song of the Wicked Witch of the West. I have grown incredibly fond of my doctor. If I knew she weren't so busy saving lives, I would ask her over dinner to pick her brains about everything she knows.
My doctor is happy with my counts and progress. My no-nonsense, utterly formidable, but truly amazing doctor even got a tad shiny eyed when I told her that, for the first time since this whole AML malarkey began, I am starting to feel more like myself. My energy is returning, I'm running, and I've started working again.
It felt so good to be able to go through the checklist and finally say no:
Have you experienced nausea?
Are you experiencing headaches?
Are you experiencing neuropathy?
Are you having trouble sleeping?
My next appointment will be towards the end of October when they do the one year post-transplant tests. That's going to be a really fun day.*
*It's probably not going to be fun. A full day of hospital tests including, but not limited to, a bone marrow biopsy, bone density scan, full blood work, pulmonary function test, EKG... I'm probably going to need a double serve of gyoza, and a nice big bowl of ice cream, at the end of that day!
- Published on
evolution of my hair
After chemo, it is very common for hair to grow back completely differently. I have heard stories of brunettes coming back blonde, straight hair growing back curly, and all manner of variation in between.
My once straight, very dark, locks came back as super soft, light brown curls. Curious at what my new do would do, I let it grow. It grew from baby fuzz to the huge mop you see above (far right) in just six months. We affectionately referred to it as my "JewFro" (I actually do have Jewish ancestry, so I'm not trying to inappropriately appropriate).
Having sported a pixie cut for almost five years, this much hair was overwhelming. Curls were also completely alien to me. I had no idea what to do with them. I was ready to go bald again rather than deal with this ever-taller-growing concoction above my head (for the record, I LOVED being bald. I found it incredibly liberating). In desperation, I turned to good old social media.
My once straight, very dark, locks came back as super soft, light brown curls. Curious at what my new do would do, I let it grow. It grew from baby fuzz to the huge mop you see above (far right) in just six months. We affectionately referred to it as my "JewFro" (I actually do have Jewish ancestry, so I'm not trying to inappropriately appropriate).
Having sported a pixie cut for almost five years, this much hair was overwhelming. Curls were also completely alien to me. I had no idea what to do with them. I was ready to go bald again rather than deal with this ever-taller-growing concoction above my head (for the record, I LOVED being bald. I found it incredibly liberating). In desperation, I turned to good old social media.
My dear friends and loved ones came to the rescue. Cousin Emily recommended DevaCurl, a NYC hair salon specializing in curls. Who knew such a thing existed?! I booked an appointment with a salon in nearby Park Slope.
I nervously sat in the chair. My DevaCurl trained stylist, Diana, stood behind me, scissors in hand. Addressing the mirror she asked,
"What would you like done?"
"Well... This is the first time I've had a hair cut since my hair grew back curly after cancer treatment..."
Diana's eyes widened.
"I'm a survivor too!"
And thus the next hour was spent chatting about the "joys" of diagnosis, treatment, and its aftermath, hair, and life with cancer. All the while, Diana re-sculpted my hair into a cute little bob that I'm super happy with.
I nervously sat in the chair. My DevaCurl trained stylist, Diana, stood behind me, scissors in hand. Addressing the mirror she asked,
"What would you like done?"
"Well... This is the first time I've had a hair cut since my hair grew back curly after cancer treatment..."
Diana's eyes widened.
"I'm a survivor too!"
And thus the next hour was spent chatting about the "joys" of diagnosis, treatment, and its aftermath, hair, and life with cancer. All the while, Diana re-sculpted my hair into a cute little bob that I'm super happy with.
It's the first time since diagnosis that I feel something like my old self again.
I've heard that the curls might grow out, and my old hair will possibly return, but in the meantime, I'm loving my new locks.
I've heard that the curls might grow out, and my old hair will possibly return, but in the meantime, I'm loving my new locks.
- Published on
Before Cancer (BC), I was a keen runner. After Cancer (AC), I have struggled to get off the couch. With depression, weight gain, and doctor’s orders to get moving, I needed to find a way to motivate myself beyond “Get Up, It’s Good For You.”
A quick google search led me to the Ulman Cancer Fund for Young Adults. The Baltimore-based organization aims to empower cancer survivors by providing support, funding, and free programs. One such program is the Cancer to 5km which provides personal training and running groups to help cancer survivors get back into shape. The program is provided free of charge to survivors, and made possible by wonderful volunteers.
After getting the all clear from my doctor to participate, I was matched with a personal trainer. I was matched with Pat, who is based in Maryland. Although we haven't actually met in person, I can tell you Pat is awesome. Pat’s job is to provide me with a twelve week program to get me running again, and just three weeks in, I'm already seeing results.
Each weekend Pat emails me with the following week’s regimen. Thus far it has consisted of two workouts to be completed within the week (not on consecutive days). Each run is made up of walking and running in timed intervals, with the running time slightly increased each workout and each week.
Three weeks in, I’m up to walking/running for 27 minutes and yesterday reached a landmark two miles. Running not only provides a great way to see my lovely neighborhood, it lifts my mood, and improves my energy levels.
Sometimes BC’s voice whispers in my ear, “Pft. You used to run 10km three times a week. This is nothing.” AC’s voice has to politely bitchslap that mofo into place by reminding her that in the past year her body has been through quite a bit. It’s not easy to been given a month to live, go through three rounds of chemo, four days of full body radiation, and a stem cell transplant. One has to often remember to be gentle with oneself.
My goal is to run in the Dash to the Finish 5km on October 31. On that date last year, I was in hospital undergoing my stem cell transplant. I was totally wiped out from the pre-transplant treatment, and, a few days later I watched wistfully from my hospital window as the runners of the NYC Marathon zipped past. This year, I hope to be running over the finish line in Central Park.
Right now, even though it’s slow and interspersed with a lot of walking, it’s good to be running again.
A quick google search led me to the Ulman Cancer Fund for Young Adults. The Baltimore-based organization aims to empower cancer survivors by providing support, funding, and free programs. One such program is the Cancer to 5km which provides personal training and running groups to help cancer survivors get back into shape. The program is provided free of charge to survivors, and made possible by wonderful volunteers.
After getting the all clear from my doctor to participate, I was matched with a personal trainer. I was matched with Pat, who is based in Maryland. Although we haven't actually met in person, I can tell you Pat is awesome. Pat’s job is to provide me with a twelve week program to get me running again, and just three weeks in, I'm already seeing results.
Each weekend Pat emails me with the following week’s regimen. Thus far it has consisted of two workouts to be completed within the week (not on consecutive days). Each run is made up of walking and running in timed intervals, with the running time slightly increased each workout and each week.
Three weeks in, I’m up to walking/running for 27 minutes and yesterday reached a landmark two miles. Running not only provides a great way to see my lovely neighborhood, it lifts my mood, and improves my energy levels.
Sometimes BC’s voice whispers in my ear, “Pft. You used to run 10km three times a week. This is nothing.” AC’s voice has to politely bitchslap that mofo into place by reminding her that in the past year her body has been through quite a bit. It’s not easy to been given a month to live, go through three rounds of chemo, four days of full body radiation, and a stem cell transplant. One has to often remember to be gentle with oneself.
My goal is to run in the Dash to the Finish 5km on October 31. On that date last year, I was in hospital undergoing my stem cell transplant. I was totally wiped out from the pre-transplant treatment, and, a few days later I watched wistfully from my hospital window as the runners of the NYC Marathon zipped past. This year, I hope to be running over the finish line in Central Park.
Right now, even though it’s slow and interspersed with a lot of walking, it’s good to be running again.
- Published on
In last week's post, I promised to write about my glorious return to running, but as this week marked the conclusion of my first cancer support group, I decided to go with that. You’ll just have to come back next week for the running!
I have a confession to make. I am a RENT-head. For those of you who know me well, this will come as no surprise. My teenage dream was to be involved in RENT in any way possible. I declared on many occasions, usually after the umpteenth time listening through the original Broadway cast recording and singing every role, that if there was a way for me to be involved in a production — even if it meant just sweeping the stage — I would do it. I never once imagined that I would somewhat come to live the score.
I have since lived my dream, and have been lucky enough to be involved in three different productions as a lighting op, cast member, and vocal coach. Unfortunately, I’m beginning to think there’s a bit of a curse between me and the musical whose message is “no day but today.”
Each time I’ve been a part of RENT, someone I know has gotten cancer.
The first time I did RENT, the mother of one of the cast members died from a prolonged battle with cancer.
The second time I did RENT, a close family member was diagnosed with prostate cancer.
The third time I did RENT, I got leukemia. A year later, I joined my first support group.
Early on in my treatment, an aunt, who is a breast cancer survivor, insisted I sign up for a support group. I barely had the strength to sit up yet alone sit in a circle and discuss my feelings, but six months after my transplant I was beginning to feel in desperate need for some extra support.
On top of the physical side effects of treatment, I was dealing with some major depression. Even with an amazingly patient and supportive husband, and network of people around me, I needed some extra help. Along with one-on-one counseling sessions, I took my aunt’s advice and joined a Young Adult Post Treatment Group at Cancer Care.
Cancer Care provides free counseling, support groups, resources, and financial assistance to people living with cancer. The Young Adult Post Treatment Group is for people aged 20-39 who have completed cancer treatment within the past year and a half, and meets once a week for twelve weeks.
The first session was also the first time since diagnosis that I caught a train by myself, and the first time I traveled into Manhattan for something that wasn’t a hospital appointment. It was exciting and depressing. Traveling up the elevator to the 22nd floor of the Cancer Care headquarters on 7th Avenue, it dawned on me that I was about to attend an actual support group. The song “Life Support” started playing in my head.
I have a confession to make. I am a RENT-head. For those of you who know me well, this will come as no surprise. My teenage dream was to be involved in RENT in any way possible. I declared on many occasions, usually after the umpteenth time listening through the original Broadway cast recording and singing every role, that if there was a way for me to be involved in a production — even if it meant just sweeping the stage — I would do it. I never once imagined that I would somewhat come to live the score.
I have since lived my dream, and have been lucky enough to be involved in three different productions as a lighting op, cast member, and vocal coach. Unfortunately, I’m beginning to think there’s a bit of a curse between me and the musical whose message is “no day but today.”
Each time I’ve been a part of RENT, someone I know has gotten cancer.
The first time I did RENT, the mother of one of the cast members died from a prolonged battle with cancer.
The second time I did RENT, a close family member was diagnosed with prostate cancer.
The third time I did RENT, I got leukemia. A year later, I joined my first support group.
Early on in my treatment, an aunt, who is a breast cancer survivor, insisted I sign up for a support group. I barely had the strength to sit up yet alone sit in a circle and discuss my feelings, but six months after my transplant I was beginning to feel in desperate need for some extra support.
On top of the physical side effects of treatment, I was dealing with some major depression. Even with an amazingly patient and supportive husband, and network of people around me, I needed some extra help. Along with one-on-one counseling sessions, I took my aunt’s advice and joined a Young Adult Post Treatment Group at Cancer Care.
Cancer Care provides free counseling, support groups, resources, and financial assistance to people living with cancer. The Young Adult Post Treatment Group is for people aged 20-39 who have completed cancer treatment within the past year and a half, and meets once a week for twelve weeks.
The first session was also the first time since diagnosis that I caught a train by myself, and the first time I traveled into Manhattan for something that wasn’t a hospital appointment. It was exciting and depressing. Traveling up the elevator to the 22nd floor of the Cancer Care headquarters on 7th Avenue, it dawned on me that I was about to attend an actual support group. The song “Life Support” started playing in my head.
Look, I find some of what you teach suspect
Because I’m used to relying on intellect
But I try to open up to what I don’t know
Because reason says
I should have died
Three years ago
There's only us
There's only this
Forget regret
Or life is yours to miss
No other road
No other way
No day but today”
Over the twelve weeks, the group became my life raft. No matter how tired I was, or how depressed/angry I was feeling, I made myself get to the sessions. Each week, we would share what was going on in our lives, and talk through our cancer related issues. The rules of the group and confidentially means I can’t share the stories here, but I will say that this truly lovely group of people, hailing from all walks of life, a wide range of backgrounds and experiences, were all dealing with the same issues that accompany life during and after the Big C.
Despite the wide range of diagnoses, we were all going through similar experiences. From hair loss and regrowth, weight loss and weight gain, depression, anger, frustration, dealing with families/friends/spouses, dealing with doctors, ongoing tests and results, fear of relapse, to what it’s like living post-chemo in the NYC summer, talking through life after cancer with a group of people going through the same thing was hugely helpful. It didn’t make the problems go away, but it was a relief to know we weren’t alone in our experiences.
This week, the final week, we looked at pictures of each other before and after treatment. We laughed at old hair styles, and how much we have all been physically changed by treatment. We compared scars and port sites, and shared pictures of our families and pets. I am immensely grateful to each person in the group, for their personal strength, their humor, their willingness to offer the tissue box, for sharing their stories, and just for holding space. Our moderator was wonderful, and did an amazing job of guiding the conversation and providing insights.
My support group may not have sung a single note, or even preached about living each day as if it were our last, but it certainly uplifted and provided me with a supportive space to share my experience.
I'll hopefully be able to join the group again when it starts back up in October, and I’ve also signed up for a leukemia specific group which starts up in a couple of weeks.
In the meantime, I don’t think I’ll be signing up for a production of RENT any time soon…
Despite the wide range of diagnoses, we were all going through similar experiences. From hair loss and regrowth, weight loss and weight gain, depression, anger, frustration, dealing with families/friends/spouses, dealing with doctors, ongoing tests and results, fear of relapse, to what it’s like living post-chemo in the NYC summer, talking through life after cancer with a group of people going through the same thing was hugely helpful. It didn’t make the problems go away, but it was a relief to know we weren’t alone in our experiences.
This week, the final week, we looked at pictures of each other before and after treatment. We laughed at old hair styles, and how much we have all been physically changed by treatment. We compared scars and port sites, and shared pictures of our families and pets. I am immensely grateful to each person in the group, for their personal strength, their humor, their willingness to offer the tissue box, for sharing their stories, and just for holding space. Our moderator was wonderful, and did an amazing job of guiding the conversation and providing insights.
My support group may not have sung a single note, or even preached about living each day as if it were our last, but it certainly uplifted and provided me with a supportive space to share my experience.
I'll hopefully be able to join the group again when it starts back up in October, and I’ve also signed up for a leukemia specific group which starts up in a couple of weeks.
In the meantime, I don’t think I’ll be signing up for a production of RENT any time soon…
Update:
An amended version of this post was featured on CancerCare's "Stories of Hope and Help."
An amended version of this post was featured on CancerCare's "Stories of Hope and Help."