I was just carousing nytimes.com and came across this video documenting one small aspect of Suleika Jaouad's leukemia journey for the past year. She is a contributing writer for NYT and has a column, "Life, Interrupted." I've heard of her before, but never read any of her articles or watched any of the videos. I just decided to and almost stopped a quarter of the way in. I can't stop crying because it's exactly what I went through with Mike, although we've been together longer than they have. You can just listen, you don't even have to watch. However the video content felt hauntingly familiar to no surprise.
People continually tell me what an amazing man Mike is for sticking by me considering we aren't even married. Sometimes I feel like the way people say it is like, "you're lucky he didn't leave you" with all the stress of the situation. It feels kind of shitty and hurtful, but it's sadly truthful. There are people out there who are not as lucky as me, whose spouse didn't sign up for the hard times. I think the only thing that got us through was having positive attitude and making light of things. I can be a bit cynical about things unlike his light-hearted approach, but I think after all our years together his personality rubbed off onto me at the best time possible.
I'll reverse the saying, behind every great woman is a great man.
Monday, April 30, 2012
Wednesday, April 25, 2012
Week 40 - Team In Training
This post is WAY overdue!!
I feel there is some sort of irony/purpose behind this. I started running several years ago to get in shape, but never more than about 1 or 2 miles. My Dad was diagnosed with mandibular cancer in spring of 2008. He went through a pretty rough round of chemo and radiation that fall, after a successful surgery to remove it. In an attempt to preoccupy my mind and support my Dad in the only way I physically felt I could, I started running 5ks and a 10k, mostly to benefit cancer-related races.
Fast forward a year to summer 2009 the last week of July, I join Team In Training, an endurance sports training program through The Leukemia & Lymphoma Society. I decided that running a half marathon would be the big hurrah to celebrate his year of remission and to push myself to do something greater than I've ever done. Well I did it and it was a life changing experience. I know most people say that about marathons, but I didn't need the full marathon for it to happen. It was such a rewarding amazing experience to be part of the team and to raise money for such a worthy non-profit program. My favorite memories were early Saturday morning when I would run farther each week than I had before in my life. When I ran the 1/2 marathon my Dad was towards the end, near the finish line. I stopped only to hug him and totally lost it along with the rest of my family. It was so emotional and exciting!
I found out more information about leukemia and lymphoma while doing to fundraising and met several people who have recovered and were running races or who were still going through treatment. It was my only experience with leukemia or lymphoma, that is until I was diagnosed with acute myeloid leukemia 2 years from the date I joined that wonderful organization.
You never know how things work out do you? I think it was the universe preparing me to see that I can overcome this and do something big once again. I want to give a big thank you to the Suncoast Chapter Team In Training for supporting me throughout my recovery. Through some emails with staff I mentioned I still wear my beat up hat and what did they do? Mailed me a brand new one! How thoughtful. I wear it all the time when I walk.
Through this blog and sharing my experience I have made a new friend who is actually running a FULL marathon in Alaska for Team In Training/The Leukemia & Lymphoma Society. Cody so motivated to help others like me. He has a very touching story about his first marathon with TNT/LLS at Disney. His story is particularly heart warming when he saw a young girl in the last miles of his race who was already a "survivor."
If you ever want to join TNT, they have a variety of half marathons, marathons, triathlons and century rides to choose from! Visit: http://www.teamintraining.org/
 |
| I'm wearing it today actually! |
Check out Cody's fundraising page and be part of his journey to the finish line! http://pages.teamintraining.org/sun/anchor12/cscarboro
Here's Cody pictured on the right during his Disney Marathon.
Monday, April 23, 2012
Week 40 - Chemo and Fertility
This post is inspired in part by Giuliana Ranic, TV Host/Personality who announced today that she is having a baby via a gestational surrogate after her battle with breast cancer. I am also inspired to write this by a handful of posts from various cancer forum's and blogs of women around the US that I've followed that have resulted in fertility issues because of cancer treatment. I think it's great the Rancic's already had frozen embryos to work with, but what about the women or men out there who didn't have that option?
Young adults should be more informed during initial diagnosis of their fertility preservation options or at least have very upfront conversations about their lack of options. FYI if you can't tell already, chemotherapy or radiation can cause a decreased or total lack of fertility.
This is personal, but I feel the time is right to share this with you. I would never share this without feeling empowered rather than defeated (which took a bit to get to). I was not told until the day I started chemotherapy that I was unable to save my eggs. I am not totally sure why the conversation never happened the first day I was admitted. I do recall being asked if I wanted talk about fertility with a social worker during my hospital stay - I said yes, but I wasn't really thinking it pertained to me and my cancer treatment. I was actually told by a nurse the day I was going to start chemo while sitting in bed that I was unable to go through egg retrieval because I was "too fragile" to go through a surgery without potentially dying in the operating room. I was also told I may have difficulty becoming pregnant due to my high dosage of chemotherapy. It was such a blow to me, fertility wasn't even on my mind yet. I would imagine other young adults going through cancer didn't realize you need to cover SO many more bases than you realize, particularly this. I should note I have no way of knowing my fertility "chances" until I decide to start a family.
Through later conversations with my doctor and realizing the larger problem at hand (living), I've chosen to not worry about this until I cross that bridge however it still concerns me. It concerns me because I also wonder if other women were in the same position as me. Would they have chanced a surgery to have the option of a baby or were the doctors thinking it was a moot point because it wasn't a viable option? Also, how diligent are doctors and social work programs at other hospitals in ensuring this is discussed immediately? I hope this post puts this at the top of people's mind because it's certainly a quality of life issue too. You should be informed of all the options immediately or before it's too late.
I applaud the women I've followed and have suffered loss or pain through their treatment and those who are discussing this topic more because it is very sensitive and important. I definitely feel more empowered because of them, so thank you!
Young adults should be more informed during initial diagnosis of their fertility preservation options or at least have very upfront conversations about their lack of options. FYI if you can't tell already, chemotherapy or radiation can cause a decreased or total lack of fertility.
This is personal, but I feel the time is right to share this with you. I would never share this without feeling empowered rather than defeated (which took a bit to get to). I was not told until the day I started chemotherapy that I was unable to save my eggs. I am not totally sure why the conversation never happened the first day I was admitted. I do recall being asked if I wanted talk about fertility with a social worker during my hospital stay - I said yes, but I wasn't really thinking it pertained to me and my cancer treatment. I was actually told by a nurse the day I was going to start chemo while sitting in bed that I was unable to go through egg retrieval because I was "too fragile" to go through a surgery without potentially dying in the operating room. I was also told I may have difficulty becoming pregnant due to my high dosage of chemotherapy. It was such a blow to me, fertility wasn't even on my mind yet. I would imagine other young adults going through cancer didn't realize you need to cover SO many more bases than you realize, particularly this. I should note I have no way of knowing my fertility "chances" until I decide to start a family.
Through later conversations with my doctor and realizing the larger problem at hand (living), I've chosen to not worry about this until I cross that bridge however it still concerns me. It concerns me because I also wonder if other women were in the same position as me. Would they have chanced a surgery to have the option of a baby or were the doctors thinking it was a moot point because it wasn't a viable option? Also, how diligent are doctors and social work programs at other hospitals in ensuring this is discussed immediately? I hope this post puts this at the top of people's mind because it's certainly a quality of life issue too. You should be informed of all the options immediately or before it's too late.
I applaud the women I've followed and have suffered loss or pain through their treatment and those who are discussing this topic more because it is very sensitive and important. I definitely feel more empowered because of them, so thank you!
Wednesday, April 18, 2012
Week 39 - Girl, Whatchu Been Doin?
I realized it's been a long time since I've updated about my health!
* I have about half the amount of platelets as you "normal" folk so I'm still bruising fairly easily, but beter than a few weeks ago.
* My blood pressure has improved. It usually drops quite a bit after chemo and I would get very lightheaded and blackout a little when standing.
* I have gained about 2lbs in the past 3 week. Probably because I'm not eating my mom's healthy food.
* My immune system is still very low; white blood count is about 1/4 of what it should be. I'm neutropenic (still). The good news today my oncologist took me off a couple prescriptions. Wohoo!! I hate taking tons of pills.
* I overdid it one day last week with walking too much and doing too many chores around the house. I paid for it by feeling terrible for two days after. Basically headaches, a sore body, and being totally wiped like I ran a couple miles. It's been a struggle to pace myself and be more active without hurting myself or getting dehydrated. Dehydration seems to be more of an issue for me now that I've been moving around more.
* My bone marrow biopsy has been scheduled from four weeks from now. Basically they need to confirm I'm still in remission. A couple people have been confused and ask me why did I still get additional rounds of chemo if I was in remission? I was in remission in October, about a month after I finished my first chemo (called Induction). With my Leukemia, APL, the relapse rate without those additional 3 rounds of chemo (called Consolidation) is a pretty sure thing. So they blast you with it to kill off microscopic cancer cells that might be lurking.
What else have I done lately? I visited my coworkers at the office for the first time since the day I was diagnosed. It was so nice to see them. They made me laugh a lot!
We celebrated Mike's birthday by watching the TB Rays play with a group of friends. And thank freaking god flu season is on the oust!! I have been able to see my friends more lately because they aren't sick. Keep taking you're vitamins and using sanitizer friends. ;) I also had my three year anniversary with Mr. Mike. Pictured above, we were goofing around this weekend. He's had that mullet wig for 5 years, it's disgusting.
Other than that my weekly doctor visits have been more entertaining lately because they have the dog program going on outside the blood draw area. It's a program Moffitt started about 10 years ago where dogs visit patients. I admit I am not a big animal person. In fact, my friends think I'm sort of evil or something? I do like animals - just the docile, low energy ones. When I was in the hospital for a month I was one of the few crazy patients who would walk around the whole hospital with my shaved head, masked face and Johnny 5 (IV pole). What a sight! I remember seeing the dogs and feeling happy when they were out and I could peer over and see them. Where I was "living" the dogs couldn't visit because of the no immune system-thing. Hospitals can be so sterile and drab, like a prison, so this program lightens the mood a lot. I've been making some new friends (pictured). The dog owner and blood draw staff member got excited and said, "let me get a picture of you with the dog," after I told her I wanted to blog about them and was asking to take pictures. It's definitely a nice program they run.
* I have about half the amount of platelets as you "normal" folk so I'm still bruising fairly easily, but beter than a few weeks ago.
* My blood pressure has improved. It usually drops quite a bit after chemo and I would get very lightheaded and blackout a little when standing.
* I have gained about 2lbs in the past 3 week. Probably because I'm not eating my mom's healthy food.
* My immune system is still very low; white blood count is about 1/4 of what it should be. I'm neutropenic (still). The good news today my oncologist took me off a couple prescriptions. Wohoo!! I hate taking tons of pills.
* I overdid it one day last week with walking too much and doing too many chores around the house. I paid for it by feeling terrible for two days after. Basically headaches, a sore body, and being totally wiped like I ran a couple miles. It's been a struggle to pace myself and be more active without hurting myself or getting dehydrated. Dehydration seems to be more of an issue for me now that I've been moving around more.
* My bone marrow biopsy has been scheduled from four weeks from now. Basically they need to confirm I'm still in remission. A couple people have been confused and ask me why did I still get additional rounds of chemo if I was in remission? I was in remission in October, about a month after I finished my first chemo (called Induction). With my Leukemia, APL, the relapse rate without those additional 3 rounds of chemo (called Consolidation) is a pretty sure thing. So they blast you with it to kill off microscopic cancer cells that might be lurking.
What else have I done lately? I visited my coworkers at the office for the first time since the day I was diagnosed. It was so nice to see them. They made me laugh a lot!
We celebrated Mike's birthday by watching the TB Rays play with a group of friends. And thank freaking god flu season is on the oust!! I have been able to see my friends more lately because they aren't sick. Keep taking you're vitamins and using sanitizer friends. ;) I also had my three year anniversary with Mr. Mike. Pictured above, we were goofing around this weekend. He's had that mullet wig for 5 years, it's disgusting.
Other than that my weekly doctor visits have been more entertaining lately because they have the dog program going on outside the blood draw area. It's a program Moffitt started about 10 years ago where dogs visit patients. I admit I am not a big animal person. In fact, my friends think I'm sort of evil or something? I do like animals - just the docile, low energy ones. When I was in the hospital for a month I was one of the few crazy patients who would walk around the whole hospital with my shaved head, masked face and Johnny 5 (IV pole). What a sight! I remember seeing the dogs and feeling happy when they were out and I could peer over and see them. Where I was "living" the dogs couldn't visit because of the no immune system-thing. Hospitals can be so sterile and drab, like a prison, so this program lightens the mood a lot. I've been making some new friends (pictured). The dog owner and blood draw staff member got excited and said, "let me get a picture of you with the dog," after I told her I wanted to blog about them and was asking to take pictures. It's definitely a nice program they run.
Monday, April 16, 2012
Week 39 - Miles For Moffitt "Get Your Ash In Gear"
My excellent coworkers told me last week they are organizing a team on my behalf to run this year's Miles for Moffit at The University of South Florida, Saturday May 12 from 7am-10am at the USF Sun Dome. The team goal is to raise $850 in my honor. All registration fees and donations (100%) support Moffitt's Cancer Research Programs. The event is an annual walk/run of 5 Mile, 5K, 1 Mile, Kids Dash or Wheelchair event. In 2011, over 5,000 participated in the events which raised $250,000.
Team Fundraising Page: http://www.active.com/donate/MilesforMoffitt2012/AshKgo2012
Start Your Registration:
Enter as a participant of the "Get Your Ash In Gear" team
For those in the area who are up for the challenge, enter any of the races as a participant of the "Get Your Ash In Gear" team! When you start the registration process you will have a drop down box that will include team names, select our awesome one. How ridiculously cool is that team name, by the way!?
Or if you would like to send your support without participating in the event. You can be a "virtual racer" and still receive the Miles for Moffitt event shirt.
If you do race the event and would like a separate, snazzy grey colored "Get Your Ash In Gear Shirt" featuring Girl With The Swirl (design courtesy of Ken) please let me know ASAP after you register. My fantastic coworkers created a team shirt featured on the banner above. Prices should be around $5-ish depending on how many orders I receive. Again, if you're interested in that additional shirt contact me ASAP, ONLY if you are participating in the event please!
You can donate any amount to help the team! Registration for the race is not included in the team fundraising total. On the team fundraising page on the top right, you can enter a donation amount of your choice in the box.
I will be walking the 1 mile race for all you slow pokes who care to join. It should be a great race. Special thanks to Jeff, Ken, Nariza and Jessica for organizing this special event. I am so touched. Thank you in advance for your help on behalf of us all!
For additional info on the race including frequently asked questions from parking, to t-shirt/race packet pickup/to the time of the race, visit: http://www.MilesforMoffitt.com/MilesforMoffitt/ThingsToKnow.aspx
Email me at thegirlwiththeswirl@gmail.com if you're racing and have additional questions. I will send out more info as the date gets closer so we can meet before the race.
Get Your Ash In Gear, fo' real!!!
Team Fundraising Page: http://www.active.com/donate/MilesforMoffitt2012/AshKgo2012
Start Your Registration:
Enter as a participant of the "Get Your Ash In Gear" team
For those in the area who are up for the challenge, enter any of the races as a participant of the "Get Your Ash In Gear" team! When you start the registration process you will have a drop down box that will include team names, select our awesome one. How ridiculously cool is that team name, by the way!?
Or if you would like to send your support without participating in the event. You can be a "virtual racer" and still receive the Miles for Moffitt event shirt.
If you do race the event and would like a separate, snazzy grey colored "Get Your Ash In Gear Shirt" featuring Girl With The Swirl (design courtesy of Ken) please let me know ASAP after you register. My fantastic coworkers created a team shirt featured on the banner above. Prices should be around $5-ish depending on how many orders I receive. Again, if you're interested in that additional shirt contact me ASAP, ONLY if you are participating in the event please!
You can donate any amount to help the team! Registration for the race is not included in the team fundraising total. On the team fundraising page on the top right, you can enter a donation amount of your choice in the box.
I will be walking the 1 mile race for all you slow pokes who care to join. It should be a great race. Special thanks to Jeff, Ken, Nariza and Jessica for organizing this special event. I am so touched. Thank you in advance for your help on behalf of us all!
For additional info on the race including frequently asked questions from parking, to t-shirt/race packet pickup/to the time of the race, visit: http://www.MilesforMoffitt.com/MilesforMoffitt/ThingsToKnow.aspx
Email me at thegirlwiththeswirl@gmail.com if you're racing and have additional questions. I will send out more info as the date gets closer so we can meet before the race.
Get Your Ash In Gear, fo' real!!!
Wednesday, April 11, 2012
Week 38 - Beard Growing for Charity
I snapped this picture of us last night because Mike's beard is getting out of control! A group of men at his work are competing to see who can grow their beards for the longest amount of time without trimming. In turn, people at his work sponsor him per week with a donation towards a cause of their choice. Mike is growing his for The Leukemia & Lymphoma Society. Go Mike!
The contest ends in AUGUST! This is going to get interesting. He's starting to remind me of the puppet who sings "Silver and Gold" in the Rudolph movie. HAH!
The contest ends in AUGUST! This is going to get interesting. He's starting to remind me of the puppet who sings "Silver and Gold" in the Rudolph movie. HAH!
Tuesday, April 10, 2012
Week 38 - GWTS as a Guest Post
Pretty cool news.
Some excerpts of my blog were re-published on Being Cancer Network. It's a blog resource for individuals transformed by cancer. Thank you to them for including me in the long list of stories out there! You can check it out here:
A Mad Cancer World - Guest Post
Some excerpts of my blog were re-published on Being Cancer Network. It's a blog resource for individuals transformed by cancer. Thank you to them for including me in the long list of stories out there! You can check it out here:
A Mad Cancer World - Guest Post
Monday, April 9, 2012
Week 37 - Leukemic or Alcoholic?
If this title doesn't entice you to watch my 2nd video blog installment, then I really don't know what to do for ya!
In a nutshell, it's the story I've finally mustered up to tell when my chiropractor essentially accused me of being a drunk because of all the bruises on my body. Yeah, it happened... Little did her or I know it was leukemia spreading in my bone marrow and blood, causing it. The nerve!
I'm totally loving all the feedback on the first video blog, so I will keep them going and throw in some
in randomly, separate from here. Find my YouTube page at: http://www.youtube.com/GIRLWITHTHESWIRL
In a nutshell, it's the story I've finally mustered up to tell when my chiropractor essentially accused me of being a drunk because of all the bruises on my body. Yeah, it happened... Little did her or I know it was leukemia spreading in my bone marrow and blood, causing it. The nerve!
I'm totally loving all the feedback on the first video blog, so I will keep them going and throw in some
in randomly, separate from here. Find my YouTube page at: http://www.youtube.com/GIRLWITHTHESWIRL
Thursday, April 5, 2012
Week 37 - Girl With The Swirl's First Video Blog
I made my first video blog! It's long winded - clearly when I write I can edit down much more. It will take a bit to load, apologies. Have a snack wrap or something while you wait. Hopefully the screen doesn't freeze on me making an ugly face.
Those who haven't been able to see what I look like during this process can now get an idea of what I do now. I wish I did this sooner, it would have been a nice way to update. I am having a "good" day, so yay me!
I should also mention that at one point in the video I say I connect with people mostly online. I also do in letters and phone. I'm not totally addicted to just communicating online. LOL
Those who haven't been able to see what I look like during this process can now get an idea of what I do now. I wish I did this sooner, it would have been a nice way to update. I am having a "good" day, so yay me!
I should also mention that at one point in the video I say I connect with people mostly online. I also do in letters and phone. I'm not totally addicted to just communicating online. LOL
Wednesday, April 4, 2012
Week 37 - Feeling the Disconnect
I'm currently waiting at the doctors for blood work. They're about 40 minutes backed up even though nobody appears to be here, so I figured I'd post a little something. I have a nagging headache, I think it's because I didn't eat a full lunch - my appt was around lunch time today. In the blood draw area a new guy brought me back to get my blood sampled. He said, "Hey I know you!" I turn to look at him closely and it's this young, sweet guy who transported (wheeled me in a wheelchair) up for XRays and a CT Scan my very first night in the hospital and then other times. Apparently he got a promo, so good for him. We chatted for a while about how long it's been since that first day and that he too is trying to grow is hair out. He remembered me with hair long, buzzed and now short. PS-I'm jealous his hair looked like it belonged on a Pantene commercial. Anyways he kept saying how good I looked and how nice it looked short, to the point where I wasn't sure if it was one of those "you look good for having had cancer" or if he was sorta flirty? Probably the first since I get that A LOT. Like, "Oh we didn't expect you to look alive or not sick?" Hahah it's totally fine though, I like that people think I look normal.
**Back at home** Finally got blood work back and my numbers dropped (dang) so I'm still high risk for infection. I was so positive it was trending up. Blah! On the drive home I kept thinking wow 8 months. That is almost a pregnancy, it's almost a year, it's time I spent in waiting rooms for hours, being poked and examined, sitting at my house, not working, being on the sidelines to all my friends fun outings I don't get to do. There are certainly benefits to this, discovering a new appreciation for life, being closer to people, tapping into my creative side and of course sharing my story with you. However, every once in a blue moon I think I've missed out on parts of life. Make sense? I typically try to think of something else quickly and block it out. But today I didn't, so here I am sharing.
It's like there's a bit of a disconnect from the busy world out there and people around me. While everyone is moving forward I feel "stuck" some moments. In a sense while people are trying to understand what I'm going through, I am trying re-understand what their lives are like working 12 hour days, going out and doing this or that. In sum, who I used to be. It's not that I don't want people to tell me their stories and act normal to me. I certainly don't think I'm the first 20-something year old with a serious illness or that I'm so special pay attention to me. It's more of who else can put themselves at my age, in my shoes. I have lately found www.blog.stupidcancer.com to be a nice resource for me to see other young people who have dealt with cancer. It really nails it on the head from the funny to the bad. Almost done I swear.. I especially find this process daunting because I had an active lifestyle prior to this. It drives me crazy to sit at home and get lightheaded bending over to check the mail in our mailbox (just happened). I just wish I could go for a run (not a slow walk) and go out to romantic dinner with Mike (not sit in doctors offices or on the couch).
Anyways, I hope I don't sound woe is me. I just want to be more upfront about this experience. I'm sure not aiding this is my hunger. Watch out for cranky pants!!! I need to figure out a chicken recipe for dinner. I'm so hungry I might just eat a bunch of snacks right now and ruin my meal. However Mr. Mike might feel cheated out of a good dinner! :)
**Back at home** Finally got blood work back and my numbers dropped (dang) so I'm still high risk for infection. I was so positive it was trending up. Blah! On the drive home I kept thinking wow 8 months. That is almost a pregnancy, it's almost a year, it's time I spent in waiting rooms for hours, being poked and examined, sitting at my house, not working, being on the sidelines to all my friends fun outings I don't get to do. There are certainly benefits to this, discovering a new appreciation for life, being closer to people, tapping into my creative side and of course sharing my story with you. However, every once in a blue moon I think I've missed out on parts of life. Make sense? I typically try to think of something else quickly and block it out. But today I didn't, so here I am sharing.
It's like there's a bit of a disconnect from the busy world out there and people around me. While everyone is moving forward I feel "stuck" some moments. In a sense while people are trying to understand what I'm going through, I am trying re-understand what their lives are like working 12 hour days, going out and doing this or that. In sum, who I used to be. It's not that I don't want people to tell me their stories and act normal to me. I certainly don't think I'm the first 20-something year old with a serious illness or that I'm so special pay attention to me. It's more of who else can put themselves at my age, in my shoes. I have lately found www.blog.stupidcancer.com to be a nice resource for me to see other young people who have dealt with cancer. It really nails it on the head from the funny to the bad. Almost done I swear.. I especially find this process daunting because I had an active lifestyle prior to this. It drives me crazy to sit at home and get lightheaded bending over to check the mail in our mailbox (just happened). I just wish I could go for a run (not a slow walk) and go out to romantic dinner with Mike (not sit in doctors offices or on the couch).
Anyways, I hope I don't sound woe is me. I just want to be more upfront about this experience. I'm sure not aiding this is my hunger. Watch out for cranky pants!!! I need to figure out a chicken recipe for dinner. I'm so hungry I might just eat a bunch of snacks right now and ruin my meal. However Mr. Mike might feel cheated out of a good dinner! :)
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