Unwelcomed Guest

Life After Treatment

2012-02-13T22:17:00.000-08:00

I know I should write more often but life is busy and I find it hard to put my thoughts down. What I write comes across more serious than who I am.

Last week was a great week. It's been four months and on Monday, February 6th I had a CT scan of my lungs and an MRI on my leg; the results all came back showing no sign of sarcoma. I have to go in every four months for the next year and half and have scans to make sure the sarcoma doesn't return. I'm feeling good and I would say my health is back to about 85%. My doctor says that it takes about a year to recover completely and feel like you did before you started the process. I truly feel like I have been cured and that the sarcoma has left my body to never return. I'm back to running 3 miles 2 to 3 times a week. That feels like another hurdle completed. You hear about people losing weight while going through chemo treatment but I gained about 10 pounds so I'm working to lose the extra pounds. All my hair has grown back; it came in thicker and more all over. It also came back wavy. I like it but I'm still getting used to it.

During my treatment I took part in a study for a trial drug. There were 15 people in the study and I was one of the last to join. The study was to determine proper dosage of a trial chemo drug. I was put on the highest dosage and about a week into the study I broke out with a rash all over my body. They lowered my dosage and that dosage is what they are moving forward for a larger study. The great news in all of this is that everyone in the study (for some it has been more that 2 years) none of them have had a recurrence. As I have said before, 2 years is a big milestone. I have a 67% chance that the sarcoma will not return but in 2 years that percentage will improve even more. The larger study will be to see if the trial drug cures or increases the life of those with sarcoma.

This has been a huge life changing event that I'm still figuring out. Close people have passed away in my life but not until I was in this situation have I been able to appreciate life, my family and friends the way I do now. I would hear about others that would get sick or were in an accident and I would think about it for a minute and forget about it or think it can't happen to me or my family. I believe it is a protective mechanism so I don't live my life in fear of what could happen. Since I went through this process, I have an intense appreciation for life but as time goes on and life gets back to normal that feeling lessens and this frustrates me because I don't want to lose the appreciation for life. I believe that this is one of my life lessons.

I also feel like I say this too much but I don't know any other way to express my gratitude. I want to thank you all for the support - especially my incredible partner in this life Julie. She took care of me, the kids and the house. She is truly an incredible person. It was not always easy but without her love and support it would have been a lot more challenging. Below is my new mantra. I believe this was quoted on Oprah's show from a Drew Faust book.

"Every death is a wakeup call to live more fully, more completely and more presently." Let us not miss an opportunity to live our lives, and in the process, I hope we learn to fear death less.

2011-10-24T21:34:00.000-07:00

We are done. My last chemo treatment was six weeks ago. I took my last trial drug pill about 3 weeks ago. Last week I had my lungs scanned; my lungs are clear. I will go in every 4 months for the next year to make sure my lungs stay clear.

I am cured, cancer-free. The word "remission" means temporary; it's a dirty word. Each day I feel better and my family and I gain distance from our unwelcomed guest who is no longer with us. Good riddance.

It took the help and support of our families, our coworkers, our neighbors and friends to come through this. Every prayer, email, notecard, text message, phone call, bouquet, book, meal, and babysitting break gave us refuge and strength to heal. Thank you so much for your support.

Just Enough

2011-08-15T20:49:00.000-07:00

I recognize my life still. Despite Mike's treatments, I have tried to maintain normalcy for our family between work, mealtimes, bedtimes, playdates, summer activities, chores. All the daily and weekly occurrences we all live with. However, the low level of stress over time wears our family down and I lack my typical level of patience. My family sees it and I feel badly for not having more patience.

So I am giving up on the idea of perfect patience. I forgive myself for being snappy, short-tempered and hurried. I accept imperfect patience, an imperfect summer, and an imperfect world. I look for solace in the moments where there is just enough patience and humor to clean sticky lemonade spills (again), laugh at my irrational behavior, and tuck the kids in at the end of a difficult day.

2011-08-15T20:48:00.000-07:00

Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections, but instantly set about remedying them - every day begin the task anew.

~ St. Francis de Sales

Mid-Summer Family Photo

2011-08-11T10:34:00.000-07:00

Week 18

2011-08-10T21:43:00.000-07:00

I had my fourth round of chemo and (on a sarcastic note) what fun that was. Just as I was getting my taste and hair back after surgery, it is quickly taken away again. On a brighter note, I only have two more rounds of chemo treatment and should be done around mid September. Since my last blog entry I found myself a little down and trying to process the diagnosis, treatments, and life after all this is done. I started focusing on what I do not control which inevitably puts me in the wrong mindset. After talking with a friend and thinking about what I do control, I think it's okay to be pissed off that I'm going through this up and down journey.

My Meeting with the Oncologist

2011-07-20T21:43:00.000-07:00

I met with my oncologist last Tuesday for a post-surgery follow-up and to learn results of the tumor analysis. The surgeon removed the entire sarcoma and the margins are good; this is great news. I had about 30% necrosis (or death) of the tumor; the oncologist and surgeon hoped to see about 80% necrosis. I will continue with the treatment plan; I have three more rounds of chemo.

There is a 67% chance the sarcoma will not come back or metastasize. After September, I will have CT scans every 4 months to make sure my lungs stay clear. The highest likelihood of recurrence is in the first 2 to 3 years.

To be honest, I wish the news was better and the tumor had responded more to chemo; though I am still in a good place. All 19 stamples are now removed from my leg and I am on the mend. The journey continues.

Half Way Point

2011-06-29T16:10:00.000-07:00

I am half way through treatments; I had surgery Monday morning to remove the tumor. The mass removed from my leg was approximately 3.5 inches long; the incision is about 9 inches long. I am surprised how well I am feeling. For me, the surgery has been easier than the chemo; the chemo side effects last much longer. I haven't needed pain medication since Tuesday morning. I plan to return to work this Friday.

The hardest part is giving myself shots in the stomach to prevent post-surgery blood clots. I now have some understanding of what diabetics go through. In two weeks, I meet with the surgeon and oncologist. If the tumor has responded to chemo (i.e. shows signs of dying) then I will have three more chemo cycles. If there has been no effect on the tumor then I may not have any more chemo.

I want to thank everyone for the phone calls, texts, thoughts and prayers sent my way. I truly appreciate it.

Room With a View

2011-06-15T21:47:00.001-07:00

I’m sorry I haven’t written for some time. During my third chemo treatment, I had a room with a great view of downtown , Mt Hood, Mt Adams and Mt St Helens.

Here is a quick update on were things are right now. I am half way through my chemo treatments and I completed eight days of radiation. The end of this month the surgeon will remove my tumor. I have been very fortunate and haven’t felt ill from chemo or the radiation treatments. The biggest side effect for me is fatigue.

My doctor did a rough measurement and believes my tumor shrunk by 1 cm. I had an MRI today so I will know more accurate measures later this week.

The Machine

2011-05-25T23:49:00.000-07:00

Some days all I want is for the machine to function. By the machine I am referring to the family schedule. If I just oil everything properly, get the kids fed, out the door, walk the dog, go to work then the "mechanical" routine maintains my forward momentum. I am careful not to look back at the wake left behind by the morning routine (a messy kitchen, a table littered with dishes, towels and clothes on the floor). Most days I can handle the job of House Manager-Scheduler-Mechanic.

Sometimes something breaks. Someone is sick and the domino effect begins. I have to slow down. Shift gears. And it alters my misguided belief that forward momentum equals progress.

Today, let progress be to sit still, nurse a sore throat and read a book to my child. Progress. So be it.

My New Coif

2011-05-02T21:13:00.000-07:00

I’m sporting my new look. Not all my hair is gone yet; I’m transitioning with a short-shaved cut. I thought I’d have an irregular, egg -shaped head but I was happily surprised (and relieved) that my head looks normal. The best comment so far came from Rylan’s friend Rees. “Mike, why did you shave your head? You look like an alien.”

I want to say a big thank you to Christi Carlo for taking photos and to John Chuck for styling my new coif.

Ch-ch-changes

2011-05-02T19:05:00.000-07:00

Hair today. Gone tomorrow.

2011-04-29T21:18:00.000-07:00

Week 3

2011-04-28T23:08:00.001-07:00

I made it through my first chemo cycle. I checked in to the hospital last Thursday and returned home Easter Sunday. I had a private room with a tv. I tried to stay busy during the day with work and walking the halls. Julie and the kids visited for dinner and a movie at night.

In preparation for daily chemo, I was given about 8 pills one hour before treatment to minimize the nausea. The chemo treatments took about 2.5 hours each day and were delivered intravenously.

The nursing staff at OHSU is great. I didn’t have nausea but I did get indigestion from the treatments. They gave me yogurt to help with indigestion. After returning home, I felt tired and didn't have much energy. I started feeling like myself again by Wednesday.

I am very thankful for all the support.

Bolshevik Soup

2011-04-26T07:10:00.000-07:00

Despite the first round of chemotherapy, Mike has retained his humor - and sarcasm.

I tried to make him some comfort food. Red lentil, ginger soup (thanks, Jennie, for the fabulous recipe). It's a beautiful, brightly colored soup full of fresh ginger and topped with feta and cilantro.

I did make a few errors along the way, some things got burned including my finger. I blended the ingredients at the wrong stage; the lentils shouldn't have gone into the blender. It ended up looking like baby food.

Mike took no interest in dinner and referred to it is "bolshevik soup." Whatever that means. I admit it wasn't pretty or as tasty as Jennie's version. I now have 5 quarts of soup in the freezer.

Week 2

2011-04-22T16:54:00.000-07:00

Another week closer to being cured…

Last Friday, I had a bad reaction to the clinical trial drug. I am on the highest dose for this trial and I developed a severe rash. I stopped taking the Sorafenib for one week but will be back on it tomorrow at half dose. It looks worse than it feels.

I have started my chemo treatments - today is day 2 of my first cycle. I am feeling good. I ordered "Susan D's Lunch Special" - pbj sandwich on white bread, Lay's potato chips and a Coca Cola. It hit the spot.

Friendships Made in Oregon

2011-04-22T16:26:00.000-07:00

Last week, we met my brother’s neighbor who just completed 6 months of the same treatments Mike will have. We have so many questions about what to expect that it was good to eliminate some of the unknowns.

We talked for two hours about his experience, the side effects and how to he coped during the process. It was both humbling to hear his story and sobering to know what is ahead.

Both B and his wife have offered support over the next six months. We are so thankful for the support of new friends, old friends, coworkers, neighbors and family. Thanks to you all.

Deep Breaths

2011-04-15T15:47:00.000-07:00

Anxiety is on the rise. Last night, in an effort to slow dinnertime questions and rapid-fire commentary from the kids, Mike asked everyone to take a deep breath, sit quietly and take in the smell of our dinner. After 2.5 seconds of silence Jacqueline observed, "Cucumbers don't smell and my nose is stuffed." Laughter makes for good medicine too.

Week 1

2011-04-13T22:31:00.000-07:00

I am through my first week of taking the trial drug Sorafenib. I started medication to reduce high blood pressure caused by the trial drug. Other than minor side effects, overall I am feeling great. It feels a little weird how good I feel now and to think that I’ll start chemo that may make me feel ill.

We are working on the man cave in the basement. I’m preparing for some serious relaxation and restoration. I have been trying to cut back on sugar and eat healthier but I sure miss the Reese’s Peanut Butter Cups that Ellen brings in to work.

Business As Usual

2011-04-10T23:21:00.000-07:00

This weekend we spent moving raspberries to our new garden bed, mowing the lawn, running errands and attempting to manage the nearly constant sibling rivalry. Life is pretty normal right now.

I'm trying to prepare the house to be a peaceful, healing sanctuary for Mike. Except we have two kids who seem to relish any attention from each other - good or bad. Okay, there goes the "peaceful" part. And then there's the dog and the guinea pig who insist on their due attention.

Maybe I won't be running a sanctuary in the coming months. Maybe it will be more like a circus tent with kids and animals and I'll be both circus master and caretaker.

Those raspberries in July might be my brief sanctuary. For today, it's a home full of chaos, work to be done and hope for a fruitful, summer garden.

The First Step

2011-04-06T23:21:00.000-07:00

Last Friday, I had surgery to put a port in my chest. It will be in for the next 6 months for my chemo IVs.

I started a trial drug today called Sorafenib. The drug is used for kidney and liver cancer. It may be found effective for sarcoma.

A Bump in the Road

2011-04-06T22:18:00.001-07:00

In January, Jessica Blaylock (my masseuse) found a lump on my leg. I waited a month before I saw my physician. She referred me to Dr. Vetto, a surgical oncologist, who ordered an MRI - then a biopsy - then I waited two weeks for results.

I had hoped it would be a lipoma but on March 28th, I found out I had cancer. The diagnosis is stage 2, soft tissue sarcoma. The tumor is 6.7 cm.

Sarcoma is a rare cancer that affects about 10,000 people each year. There are 50 different types of sarcomas. The good news - it is caught early, it has not metastasized and Oregon Health and Science University specializes in treating sarcomas. Aside from the tumor, I am the healthiest I have been in 10 years; I ran two marathons in the last two years. I am well-prepared to deal with this "bump in the road." I will go through 6 cycles of chemotherapy, radiation treatment and surgery.

I appreciate the supportive thoughts, prayers and positive energy that everyone has sent to me and my family. This unwelcomed guest is on its way out of my life.