Throughout my treatment I tried to keep everyone updated on what was happening and how I was doing. This is a collection of the emails I sent.
Update: The Bombshell 10/28/08
I hope this finds you well! I have to apologize for a) not doing a good job of keeping in touch and b) keeping in touch by sending a mass email. Life gets so busy. I can hardly believe that the leaves are falling and the holidays are around the corner.
I wanted to let you know what is going on in my life. It is such a small world, I didn’t want you to hear the following news through the grape vine.
As many of you know, almost exactly 6 years ago I was told that I have a lesion, or tumor, in my left temporal lobe. I had been having headaches and went in for an MRI. This is considered an accidental find, as my headaches are unrelated to the tumor. My doctors felt that the lesion was most likely a very slow growing tumor and did not feel compelled to perform a biopsy at that time. As the years have gone by, the tumor has grown and my doctors felt that the time had come to proceed with a biopsy and appropriate treatment. I had a biopsy at the Mayo Clinic on October 9th. It has been determined that my tumor is a grade 2 oligodendro glioma/astrocytoma. This is a very rare tumor - only making up 1-2% of all brain tumors. I’ve always been unique! Unfortunately, there is not a lot of information, medical studies, etc., about this type of tumor.
Because of the location, the tumor is inoperable. I will receive radiation treatments everyday, Mon - Fri, for 6 weeks starting in December. My doctors feel that the radiation will control the tumor growth for many years. In the future, if the tumor changes, other treatments, like chemo, are available. And the great news is that new treatments are on the horizon.
I have a lot of positive things going for me: I am young, very healthy, I have no symptoms, and the fact that my tumor is a grade 2 (as opposed to a 3 or 4) is very good. The long term outlook is positive.
I feel great! I completed a sprint triathlon in September. And other than meeting with many, many doctors and reading a ton about brain tumors, my life is fairly normal. I still work as an executive assistant for a VP at a Berkshire Hathaway insurance company. I also started selling real estate on the side (insert shameless promotional plug)...so if you are moving to Omaha - look me up!
I know this may seem like a bombshell, especially because email is so impersonal. But it is the most efficient way to pass along the information.
I would love to know how you are doing. I promise to make a concerted effort to return email in a timely manner. Or give me a call - my number is 402-290-0408.
I would also like to take this opportunity to say Gobble! Gobble! Happy Christmas! and Merry Hannukah. Once again, the chances that I get around to sending holiday cards are slim. But this year I have an excuse!
One Week Down 12/15/08
I have officially completed 1 week of radiation and chemo. Woo hoo! There were a few hiccups and a few sessions of praying to the porcelain god (Old Chicago tastes better the first time around!). But, all in all I'm doing really well.
Oh, for those of you who don't know, in my initial email "The Bombshell," I said I would be doing radiation. After much research, deliberation and input from many doctors we decided to treat with chemo in addition to the radiation. So, I will get daily radiation treatments and a low dose of chemo for 6 weeks, then an increasingly higher dose of chemo for at least 6 months - 5 days on, 23 days off.
It is super cold in Omaha! So cold, in fact, that they tried to draw my blood today for a white cell count and nothing would come out - insert ice running through my veins comment here - the nurse said she had been having the problem all day!
For all of you out of towners - my Omaha friends threw me a great Premo party. The cover charge was a hat, scarf, etc. It was a lot of fun, and I ended up with some incredibly cool head gear! When I'm sporting the ever popular Telly Savalas hairdon't, I'll be super fashionable and my head will be toasty warm!
For all of you in-towners - thanks so much for the party. I had a fabulous time!
Just wanted to keep everyone updated. I'll try to send update emails at least every few weeks. Thank you all so much for the thoughts, prayers and support - it really keeps my spirits up!
The Mad Hatter 1/13/09
There's a line in The Great Gatsby discussing how a man lost all of his money - "at first slowly, then all at once." Starting on Christmas Eve, that is exactly what happened to my hair! I had met with my radiation oncologist that day and she asked if I had started losing my hair. I said no. She said you will, trying to very firmly assure me that I was not immune to this unfortunate side effect of the radiation. (She tries to make sure I realize that even though I am quite young, I am not invincible. She thinks I "GO" too much.)
So, anyway, Jeff and I were getting ready to go out for dinner, then to midnight mass at the Cathedral. I ran my fingers through my hair and a pile of strands came out. Christmas day was worse. On the 26th I got a cute pixie cut. I have the most amazing stylist - she actually works magic. This lasted about a week before enough had fallen out that it was time to put all of the wonderful hats I received to good use. Right now I look like a bizarre groupie for Flock of Seagulls. I have hair on top of my head, then no hair around my head above my ears, then a tuft at my neck - truly weird. It was a Merry Hairy Christmas!
Thanks to all of the hats and scarves, I must say I am the best dressed and accessorized cancer patient I know. The nurses can't wait to see what hat I'll be wearing each day. I get lots of compliments. Even a retiree that sits at the front desk at the hospital entrance told me I have the cutest hats. He is a very sweet man. The best thing about the hats is I don't feel like I look like a cancer patient. I feel like I look fun and flirty. OMG - this could be the title of a Cosmo story - Look Fun and Flirty at Any Stage of Cancer!
The end of my radiation treatment is in sight. I should finish on January 26th. Hopefully, my hair will start growing back soon after. They will give me a month off after my radiation ends before starting the high dose chemo - still just a pill. I take the pills for 5 days, then wait for 23 days, then start the cycle again. This will last for something like 6 months. I have a feeling that the 5 days will not be much fun.
Thank you to all for the cards, the gifts and the thoughts and prayers. I feel so very loved! I hope all of you had a blessed Christmas and that your new year is full of joy.
An End 1/22/09
Yesterday, Wednesday, January 21st, marked my last day of radiation therapy. They let me finish a week or so early because they were worried about overexposing my brainstem to the radiation. I'm pretty sure that my brainstem is important, so I was totally in favor of the decision!
They told me that Wednesday would be my last day on Monday. I was in such disbelief, I kept asking questions like, "are you serious, are you sure?" YES, they reaffirmed. I can't explain how good that moment felt - to be finished with the first hurdle.
My radiation oncologist (when you have a brain tumor, you become very important and your life is filled with doctors of all shapes, sizes and specialties, so I can't just say "my doctor." I have to refer to each of them using their specialty.) told me that everything went better than she ever could have hoped. She said that CT scans lined up perfectly for treatment everyday. I had minimal side effects - yeah right! I personally don't consider extreme tiredness and hair loss minimal, but evidently things could have been much worse. But, she did say that I may suffer permanent hair loss, and that kinda sucks. I'm hoping she was just trying to set my expectations for hair regrowth really low, so that when it comes back fairly normal and decent, I will be thrilled! Yep, let's hold on to that!
In so many conversations and emails, you all tell me that I have a great attitude about all of this. I was talking to one of my friends and he said "you have such a great attitude about all of this, how can you be so positive?" I said, "I don't know any other way to be." I guess part of it is, I feel shitty enough, wallowing in my own pity party is not going to make me feel any better. The other part is, I honestly don't know another way to be. So, I've attached a little something about attitude that my friend sent me. His father taught at my university, and he was a force of positivity. He also believed in treating all humans with dignity and kindness. He died a few years ago of leukemia and he is missed. It is a good reminder for all of us.
“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.
The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.
And so it is with you... we are in charge of our attitudes.” - Charles Swindoll
On another note, my super-smart computer friends want to set up a blog for me, instead of me just sending emails. They think it will be a great way for me to put all my thoughts and ideas somewhere and I can do it whenever I want! It is a scary thought, as many of you know my thoughts and ideas are wide-ranging, bizarre, sometimes naughty and usually mildly ridiculous. But, I'm having a really hard time coming up with a name for my blog. So, I'm taking suggestions. Let me know your ideas!
The Luckiest Cancer Patient I Know 2/25/09
So it's been a while since I've sent an update, mostly because I was on cancercation. I finished my radiation and low dose chemo at the end of January and they gave me a break until this past Monday to let my body heal a bit before starting the high dose chemo rounds.
I was doing quite well; each week feeling more energized. Then like a police raid at a China Town massage parlor, all hell broke loose (there was much screaming in a language I didn't understand and praying). Last Monday I was punished with the stomach flu and it wasn't pretty. I lost 5 pounds and was down for the count all week. The good news is I found God again just in time for lent. But truly, my reprieve from daily trips to the hospital and weekly blood tests, weight measurements and doctor visits was awesome.
That brings us to this week - my first round of the higher dose chemo. I take a dose every night (just a pill) for 5 nights, then I get 23 days off. Lather, rinse and repeat for 6 months! On Monday they pumped me full of anti-nausea juice and I took my first dose Monday night. So far, I feel great. I can tell I'm tired and a little headachey, but it could certainly be much worse. And, unfortunately, it is for so many other cancer patients.
I feel truly lucky that I have been able to continue working and leading a fairly normal life throughout this process. I know my journey isn't even close to being over, but I'm glad that I've been able to handle things so well thus far.
Nothing new on the hair front. But I will say I am cancer-chic. I had an appointment with my radiation oncologist today, so I tried to dress my best in order to hold my standing as the best dressed cancer patient at the clinic. I wore a hot pink 60's style jumper, killer knee-high boots, and a Coach scarf (thanks Kami, Fanoele and Brooke) tied around my head. I turned many volunteer greeter heads (and may have caused a few heart palpitations) as I pranced through the hospital entry. My doctor did comment on the scarf and she also told me I have the cleanest ears she's ever seen - so that was kinda weird.
Anyway, I must get to bed so I can get in my full 10 hours of sleep. I hope you are all doing well and know that I think of you often. I am blessed to have such an amazing circle of supporters.
Hoppy Hairy Easter! 4/14/09
Hmmmm...what to do when sitting in the Phoenix airport with nothing to do...SEND AN UPDATE EMAIL!!! I’m sure you have all been on the edge of your seats waiting for an update.
I had an appointment with my radiation oncologist 3 weeks ago and at the time my hair was still not growing. I could tell by the look on her face that she really wanted me to “get” that I would have this bizarre Flock of Seagulls fashion tribute for the rest of my life. I was still not giving up...c’mon Nioxin...work...work.
Then, I woke up one morning took a shower and dried my hair. I looked in the mirror and where there is normally only baby soft skin, there was shadow...like 5 o’clock shadow. WOOHOOO! ( I actually screamed and jumped up and down) My hair is growing back! I still have a few months of hats and scarves until it grows into something...fixable. Another option - shave the rest of my hair and sport the Sinead O'Connor look. Throwing on a hat or scarf and heading to work takes so much less work...I may actually miss it a bit.
So I have 4 months of treatments left, the next of which I start this coming Monday. While I’m sure each round of treatment will be a little different, I think I have a handle on what to expect. I start the week feeling great, get 3 IV injections of anti-nausea awesomeness throughout the week (after blood tests and IV injections I look like a total junkie with really bad track marks on my arms), and feel progressively more tired and rundown. Week 2 is lots of sleeping which may linger into week 3 and by week 4 I’m mostly back to normal.
My mom stayed with me for week 2 last time around and it was so great having her. She cooked for me and cleaned and took care of everything. All I had to do was sleep and go to work. She is an amazing mom!
Oh yeah...so I’m in the Phoenix airport because Jeff and I went on an Easter weekend Cancercation. We needed a break so we went to San Diego. We had an amazing time. It was totally laid back and relaxing...not my typical vacation...but a great change of pace.
I hope you are all well. I think about all of you so frequently. I wish there was more time in the day to keep in better touch. Hoppy Late Easter
Prayers For Platelets 4/20/09
As most of you know, I'm kind of a planner. When this whole chemo thing started I went through my calendar and highlighted all the weeks during the six months I would be on chemo and then made tentative plans around those dates. I went to the oncologist today and my platelet count is too low to start my chemo dose for this month. Aarrrrrgggggh!
It is just a little low, so there is nothing to be worried about. I will go back next week for another blood count and will probably start a lower dosage of chemo then. Just when I thought this cancer thing was easy and predictable!
I asked the doctor if there was anything I should do, like eat more red meat, and he just laughed and said we just have to give them a bit more time to regenerate. So, I'm sending this to vent to all of you. Sometimes cancer is frustrating.
The good news is I will be able to go to Kearney this weekend and watch my brother-in-laws big production of Oklahoma at UNK! Aaaaaah, the life of a jet-setter...San Diego, Kearney...such exotic vacations!
Fierce Fetch 5/28/09
Even at 9 years old, Gracie The Dog (full legal name) is highly...spirited. Don't get me wrong - she is gentle and kind in many ways. But, when fetch is involved, she is voracious. The important thing to remember is that once the ball leaves your hand, don't go after it. After a few throws, the ball was good and slobbered up. It slipped out of Jeff's hand and bounced. Gracie went after it at full force. Unfortunately, my leg got in the way. I've always been an easy bruiser, so when her tooth snagged the front of my leg (it didn't even break the skin) - it left a nasty bruise.
The nice thing is that the nasty bruise on my leg matches the bruises that I got this week from blood draws and anti-nausea injections. In addition to being an easy bruiser - I have "tiny veins" and "thick young skin" and "ice cold hands." It usually takes at least 3 tries to find a vein that works. What I'm trying to explain is that I'm not a heroin addict or a battered wife - but I can easily understand the confusion!
I started a new round of chemo on Tuesday night. When my platelets were low for last month’s round, my doctor lowered my dose. I felt pretty good the whole month. But this month I’m back on the full dose. I have a feeling my bed and I will get very cozy this weekend. Hhhhm...I should buy a new hammock so I can sleep outside!
The Itchy and Scratchy Show 7/6/09
Another round we go. When will the itching stop...nobody knows.
In the crappy county fair of life, chemo is not like the predictable merry-go-round that is questionably safe, but you’re close to the ground so if the scary looking frog with a saddle you are riding on tips over you probably won’t get hurt. It is the ride that flips you upside-down in a rickety metal chair with no seat belts. The one that’s manned by the creepiest carnie in the joint...the only one that can handle torturing unknowing children who get off the ride and immediately throw up. (This actually happened to my sister. What’s crazy is that she still love amusement park rides...and I still hate them.)
Once again my chemo round was delayed for a week due to my plunging platelet count. This actually worked out for the best because it allowed me to enjoy my company golf tournament without falling asleep in the cart.
So I started a lower dose round of chemo last Monday. I was feeling quite well by the end of the week and decided to go back to Ogallala to spend the long weekend at the lake. It was a perfect weekend. The weather was beautiful, the water was refreshing and the fireworks were phenomenal. I had such a great time with my family and friends. It was really hard to leave on Sunday.
I woke up this morning itching...itching and scratching. At first I thought I had been attacked by anabolic mosquitos. Then I realized that the welts were covering my entire body and were getting redder by the minute. I was covered in hives from head to toe - my scalp itched. Everywhere itched.
My doctors are fairly certain that the reaction was due to sun exposure while on chemo (a side-effect I was unaware of). It didn’t matter that I slathered myself in sunscreen. Now I am popping Benadryl every 4 hours and am taking steroids. I’m finally starting to feel less itchy and the size and redness of the welts has decreased.
Some good news - I have an MRI in 1 week and what should be my last round of chemo will be at the end of July. The end is near!
What have we learned from all this - if you go for a ride with a carnie, you’ll get a rash.
Time Travel 8/31/09
I realized it had been quite a while since my last email and thought I should send an update.
So you know back in college when you may have consumed an inappropriate and unhealthy amount of alcohol and you looked at the clock and it was 4:30 in the morning and the last time you had looked at the clock it was 11 pm, but you’d been having so much fun with your friends that you couldn’t believe that much time had passed? I called it time-traveling.
That’s kind of what the last year has felt like - only not nearly as much fun and substitute the alcohol for radiation and chemotherapy (it’s a cancer-tini of sorts - you get to enjoy many of the same effects of a common hangover, but for a lot longer and for way more money)! It’s the time-traveling portion of the run-on sentence story that is the focus of the rest of my email.
I look back at the last year and in many ways can’t believe how long it has taken to get here and in so many, many other ways what a blur it has been. At times it felt like everyone else’s life was moving forward and mine was standing still. My sister had enough time to make a baby, grow it and release her into the world, while I’ve barely found time to clean my house! (Margarita Mary Wethington was born on August 21st and she is precious!)
The good news is that I’ve finished my last round of chemo and am on the road to normalcy (What am I saying? Nothing about me or my life will ever be NORMAL!) Ok - at least I’m back on a path where my life and my time is my own. I can finally make plans without looking at the calender to see if it is near a week of treatment. With the exception of a blood test in a few weeks to make sure my platelets are back to normal and an MRI and doctor appointments with the radiation and chemo docs every 6 months, my life can stop revolving around having a brain tumor.
While I will never be “cancer-free” (since they can’t remove the tumor), at this point I can LIVE with cancer. Don’t worry - I’ll keep you posted on the adventures!
You’ve all been so wonderful. I’ve loved the emails, cards, etc. I believe in the power of positive thinking and I know that is what has helped me through all of this. I must ask you all for one more favor.
My aunt Katie B, the youngest of my father’s siblings, has been fighting lung cancer. Her time left with us is short and I ask that you send a thought or prayer to the God of your understanding for her to be at peace. She has been a gift to this world and to all who know her.