Bitter & Sweet; A Family’s Journey With Cancer

Chapter 6

Chapter Six: And So It Begins…

Wednesday, June 9, 2010

Hello all! I’m sorry it has taken me so long to post today; so many of you are anxious to hear how things went yesterday. Suffice it to say we were gone from 8:00 AM to 6:30 PM, at which point I worked until 10:00 PM.

Tim checked in at 144 pounds, only a pound loss from the last visit. The good news is Tim started his chemo treatment. He does not seem to have had any ill effects thus far, which is a truly great sign of how things may go with this treatment.

We had to get an arsenal of prescriptions and medications to have available in case any side effects do develop. His chemo runs on a 21-day cycle; he receives two meds thru an IV on day one, then one med thru an IV on day eight; each IV is only 30 minutes, which is relatively short.

In addition, he takes pills twice a day for the full 14 days; the third week of the cycle he is completely off. This gives his body a chance to recover before the next round starts. This cycle is on Tuesdays, but in July it will switch to Thursdays.

The not-so-great news was that it was a grueling day. Tim had blood drawn four different times; it took them three attempts to get his IV in, and that was the hardest part for him. He is sore in his arms more than anything else.

For me, it was a morning of fighting hard (and crying hard) as the medical staff had decided before we got there that they were not going to treat him until Thursday. We were tracking UPS for medicines and they had to be rushed from our house to Roswell. It was exhausting and trying but we both feel it was worth the fight and turmoil.

The bottom line is Tim got treatment and he feels tremendously better on the inside now that something is actually being done. That is the “priceless” part that makes all the emotional agony worthwhile.

Needs? Tim and I have agreed to try and read a couple of books that have been recommended repeatedly to us. They are “The Last Lecture” and “The Triumphant Patient.” If anyone has these books to loan to us, we would love it.

Also, anyone who loves to shop/research online stuff with stores, etc., we need some outdoor things that are time-consuming to locate… let us know. Can’t begin to tell you how deeply we love you all! End entry

This is the abridged version of how the day went. I mentioned earlier that I had applied for a patient advocate position once at Roswell. After today’s events, I can almost guarantee they would do anything to keep me out of a position like that.

What baffled me was the ridiculous fight I had to win in order for Tim to start treatment. You are given this diagnosis and prognosis that there is very little time left. Then they (the medical professionals) act like a couple of days is no big deal. What’s the hurry?

And I just want to shout “Are you kidding me?”

Our patient advocate gave me the impression by the end of the day that his job was not to advocate for us at all. It was to keep us quiet and cooperative to make the “ professionals’ ” jobs easier.

There were obstacles placed before us and I just kept dismantling their arguments, the final blow being my handing them the medicine that arrived at our house via UPS. They had no more excuses and reluctantly set Tim up for his treatment.

The “advocate” came at the end of the day to politely tell us that what happened that day was unusual. In politically correct jargon, he basically told me I wouldn’t get away with it again. I just smiled angrily to myself. “Just you wait,” I thought. “I’m fighting for my husband’s life. You haven’t seen anything yet.”

Wednesday, June 9, 2010

Tim wrote his first journal entry today. I had received an email from one of his family members last night, politely informing me that I was not using the CaringBridge site properly. He was certain that most people who read it were only interested in medical updates. Requests for help should be excluded.

It was terribly upsetting to both Tim and me. I decided to leave it to Tim to respond as it was his side of the family. After sleeping on it, he wrote this beautiful and eloquent entry.

Wednesday, June 9, 2010

Hello everyone, For those of you who have known me for many years, I am Mr. Workaholic — Independent — Do everything for yourself — Ask nothing of others type of guy. Prideful and stoic, I always wanted to be considered the “go-to” guy.

The toughest part of my illness is that I am now forced to become the opposite of all of those things. For me, this has been the saddest part of being afflicted with cancer. For me, it has been sadder than cancer itself and its potential to take me. It is with this in mind that I have decided to pen my first journal entry.

I thought I’d write about how useful this website has been in relating information to all interested parties, both my medical progress, etc., as well as relating the needs of myself and my family, whose lives and structure have been turned upsidedown as a result of my sudden and tragic medical condition.

I wanted to stress to everyone that we consider CaringBridge to be a multifunctional and comprehensive tool. Although it is quite the nice medium with which to report on the progress of my condition (or lack of progress), I’d like to emphasize that my life is not the only one that has changed. Because I have little or no productivity at home as a “Doer of Tasks,” the burden of day-to-day life has increased significantly for my wife and two sons.

Not only have they been required to pick up the (my) slack due to my inabilities, but they spend a large percentage of their time tending to my personal needs and wants. For instance, on my inaugural day of chemotherapy, we left home at 8:00 AM and didn’t return home until 6:30 PM.

Darcy then had clients to see from 7:00 PM to 10:00 PM. These are clients that may have already been rescheduled several times and as exhausted as my wife was from seeing to my needs all day, she went out and worked to meet the needs of her clients. Basically, this is all intended to illustrate that because I have become the top priority, that little else is being accomplished.

I hope this justifies why we are also utilizing this website to express our needs as a family and that it is not misconstrued as an inappropriate means of soliciting any help in meeting those needs. We have received numerous individual emails offering help of any kind and in any way, shape, or form.

Because it has become so very difficult to respond to 50–70 emails per day regarding such offers to meet our needs, we have felt that the same method used to apprise everyone of my medical progress (CaringBridge) could also serve as the same vehicle with which we could express our needs.

Here is an excerpt of an email we received from CaringBridge itself, urging us to utilize the journal to go beyond basic health updates: “Your CaringBridge website has received 269 visits from supportive family and friends! Here are a few tips to help you get the most out of your CaringBridge experience. Update your journal whenever you have news to share. It’s ok to go beyond basic health updates.”

In order to create more clarity regarding the manner in which our family is taking full advantage of this vital internet resource, we will be issuing future journal updates with an A/B format as follows: A) Tim’s Med Update and B) Family Needs.

I hope you all find this recital to eloquently explain the need for our comprehensive use of this medium. I want to especially express our gratitude to those of you who have already volunteered to help us — most of whom work full-time jobs and have families of their own to take care of. I can’t thank you enough for your caring deeds and sacrifices and your sincere and heartfelt thoughtfulness.

My final note is to assure everyone that I fully intend to fight for my life, scratching and clawing and kicking. I simply refuse to believe it can take me. My motives are selfish — If I go, you lose one person, but from my perspective, I lose everyone and that is unacceptable to me.

I promise all of you, that all of my energies will be channeled towards beating this thing and perhaps breaking mortality records or being the one guy who stumps all of the medical professionals because I won’t go away… and that during this journey, I am exceedingly grateful for the new connections I have made and for all the renewed connections as well.

I love you all! Tim Colvin; End entry

And indeed, the support was astounding. People sacrificed for us. They gave up income, time, and precious energy to be with us. Tim’s attitude was inspiring and I think people wanted to be part of it.

Wednesday, June 9, 2010 Guestbook entry from our church family

Well, MOVE OVER Lance Armstrong because Tim Colvin is going to outrace you! Way to go, Tim! Now THAT is the kind of attitude, coupled with God and prayer, that will serve you well.

In the long run, it may provide the miracle required, and if not it will most certainly, beyond any shadow of a doubt, leave a legacy of a “way to live” that is indeed life-changing for your entire family. Prayers for strength, peace, and a huge measure of hope. End entry

These words were prophetic. But then, that has always been Summer’s spiritual gift — she is a prophetess from way back. Not only is she a formidable friend, but she is also a tower of strength, month after month after month. Our legacy truly is beginning.

Thursday, June 10, 2010

Hey everyone, Just wanted to let you all know Tim had a little rougher night last night. He had a slight fever, but high enough to call the doc (per their instructions). They didn’t want him to do anything unless the fever persists.

He has a little more pain, but the problem is when he takes the pain meds he gets constipated, which then increases the pain… vicious cycle. He also seems to be slowly dropping weight. He is sleeping mostly upright on the couch recliner now; it has gotten more and more uncomfortable for him to lie in a flat position. We have a person who is letting us look at their adjustable bed as we may pursue getting one to make him more comfortable.

Of course, he is at work today anyway in spite of his night. It wasn’t awful, but definitely a shift in how he’s been feeling… Thanks to all of you amazing people for helping out so much. We have a copy now of “The Last Lecture.” We love you so much!

Thursday, June 10, 2010 Guestbook entry from our church family

Hey Tim and Darcy, Just wanted to let you know I have been thinking about you. Hearing how positive you are made me so happy! I am praying for you. Keep thinking those good thoughts — you know what they say about the power of positive thinking, not to mention prayer.

Sunday, June 13, 2010 Journal entry from Tim

My least favorite ride at the carnival is the roller coaster, yet ironically it seems that is exactly what I have been on for the past couple of days. But for the most part, the majority of that ride has been high points. Thursday the 10th, I napped after work until 8:30 PM, got up, ate supper, took my chemo dose, and went to bed until morning.

All that rest must have been just what I needed because I had a fantastic and productive workday on Friday and I felt very good all day long. Typically I do much better after my morning dose of chemo than I do with the evening dose.

Friday the 11th, featured an uneventful evening. After a minor glitch (pain) at 2:00 AM that had me up to take a pain med, I slept the rest of the night. Saturday morning, I took Frankie to his baseball game where he excelled as usual.

Near midday, my friends arrived to visit me from Michigan. They spent the afternoon hanging out. Their cousin also dropped in… as did my brother who was at my aunt’s house in the neighborhood getting his haircut. My son Matthew, who has been spending much more time with us lately, also stopped by.

At night we walked to a pub for dinner and afterward said our teary goodbyes. Only one more pain inconvenience last night involving reaching for my pain and anti-nausea meds, but that’s about it. I am looking forward to having a good Sunday today before diving back into the throes of the upcoming workweek.

As you can see, it has been mostly good as my body’s learning curve for coping with the chemo treatments seems to be coming to an end, now that I am getting accustomed to it.

My thanks and gratitude to all who have continued to be our angels last week, who have shopped for us, cleaned for us, and fed us, and who have done it all so very nonchalantly and as naturally as breathing. You are all my heroes and I am humbled before you all.

I will make subsequent entries as the workweek progresses, with the lofty goal of continued success with my ongoing treatments and good news to pass along as well. My love to all of you, Tim; End entry

Oh my dear Tim, well said. You are my hero.

Sunday, June 13, 2010

We are supposed to be putting up a fence around our pool on Saturday, June 19th. Tim can manage the project but can’t do the actual labor. Tim’s “bucket list” has been small and simple (so far). He wants to spend his potentially last summer by our repaired pool, the last part of which is finishing the fence.

I was able to round up a couple of people, but we had hoped for a few more men to lend their strong arms. So “we’re looking for a few good men”… and we will need something to feed those big, strong guys… Please let us know ASAP if you can help or know someone who can; we really appreciate you! End entry

Tim and I are avid home re-modelers. We have been in our house for nine and a half years. Most of that time we have been redoing something — inside or out of the house. We work hard to avoid debt and have been relatively successful.

Our pool had originally been poured in 1958. It is an inground, 20 x 40 foot pool and in good shape. It does need some work though. We did our research and finally had a plan that would be divided up over three years. We are finally ready to start phase one.

When Tim was diagnosed, we had several conversations about this. Was this the wrong time to even start such a project? Tim decided that he truly did have a small bucket list. He didn’t have an urge to travel anywhere.

What he really wants, is to see the pool completely finished. It is our last “big” project and we have been dreaming about it the whole time we have lived here. It seems financially foolish with all we were facing. And yet, we literally have no debt. We are fast learning that life is fleeting. So we made a bold decision that yes, we will start the pool.

In fact, we forgot the three-year plan entirely. We financed the entire project. It seemed like such a small, small wish to grant Tim — that he be able to lay on his new pool patio and watch his son swim for the summer.

Once we decided, we moved ahead. We refused to worry about the money or what other people thought. It is never about “keeping up with the Joneses” for us. It is about working together and living in a space we can take great pride in.

When someone would come to see us for the first time, I would watch Tim give the grand tour and feel so warm inside. He was so proud of how hard we had worked. And as corny as it sounds, it is truly about being hospitable to others, about sharing it with other people. We often have house guests and many, many of our loved ones know there is no need to ring a doorbell when they come to the Thiel-Colvin place.

One of my favorite memories is when Tim had his entire engineering department over. Every year they are given tickets to a Buffalo Bill’s game. We live close to the stadium so the tradition became coming here for pizza and beer first, then I would drop them off at the game and pick them up so they didn’t have to struggle with parking.

The first year, Tim took those guys around to show them the lay of the land. We had recently redone the guest room. When he got there, he pointed out all the details he could remember. He pointed to the small table next to the bed and said “So we tried to think of everything possible to make someone comfortable who might stay with us. That is why we included this box of tissues by the bed, along with the remote for the TV.” And those guys just nodded and smiled.

Tim was a regular Martha Stewart.

Click here for Chapter 7