Monday, July 28, 2014

A Plan in Place

The past few weeks have kept us pretty busy. As sweet Tim announced, I turned 30 and he found some amazing deals to take us up to New York for a long weekend which we returned from last Monday evening. We had an amazing (& DELICIOUS) time up there and even got to hang out with friends from Greenville who were up for market.

We got the news we'd been waiting for when we landed in NYC that all negotiations had been worked out and we would get to close on a new house for us! Our agent (Jennifer Van Gieson) has been awesome (& very patient) through the whole process. Tim & I are alike in many ways but we also have very different likes & expectations. Plus we are both really picky so Jennifer had her work cut out for her and found us a great house we should be happy in for awhile. We close on Wednesday afternoon and we've got a few renovations to complete before we move in but are looking forward to having some space of our own again.

I will say that living with my parents has been much appreciated in our in-between period (& for those that didn't know, my sister's husband got a job here in Greenville at the same we got a contract on our house so we currently have 6 adults, 4 dogs and an almost 1 year old in the same house), were really lucky to have parents willing to take us in. It's been much calmer than I expected but one downside (which is also a positive many times) is that you are never alone so that will be a nice change with our new place. We've also learned a valuable lesson that you should never live with a baby until you have a baby. No matter how cute or sweet they are, there is something satisfying about spoiling the baby (or kid) and sending them home. That same principle doesn't work well when home is across the house :) it has been fun getting to watch our niece grow & develop over the past few months though.

We met with Dr. Edenfield the Tuesday after we returned and got Tim signed up for a trial at iTOR which looks really promising. It also is a pill based chemo so although there are some potentially significant side effects, this should give Tim's body a MUCH needed break. We're pretty anxious to see if this works for him. 

He'll have some blood work & scans this week in preparation for starting this new treatment (you have to have a 3-6 week break between treatments to get the previous drug out of your system) but were not expecting anything significant from that. 

We did hear that a friend we made through chemo years ago, Chan Beacham, passed away yesterday morning. You spend hours in the chemo room every other week and many of those hours for us were spent chatting with Chan and his wife Becky. Chan also had colon cancer and was diagnosed a few years before Tim, he and Becky graciously lead us through unfamiliar territory and were always a kind and calming influence about what we should expect. They've become dear friends of our over the years and Chan put up a brave fight, the world has lost an amazing man. Please keep his wife, Becky, and the rest of their family in your prayers in the next few weeks.

Friday, July 11, 2014

The latest

Hello again everyone.  I just finished with my last round of FOLFIRI and Zaltrap for a while.  Dr. E and I have decided that I have taken enough of a beating over the past year and a half, that I need to take a step back from this combination and start a new regime in mid August.  The month long break will give the FOLFIRI and Zaltrap enough time to leave my body along with giving me time to recover from all of those rounds.  It is scary and relieving all in one.  I am scared because what if this drug doesn't work, and relieved that I don't have this combination again for a while.  He did mention that this a combination that we could come back to again at some point, but I have been on this long enough at this time.

Ok, enough about me.  Today is also a big day for someone else.  It is Jenny's 30th birthday today, and I wanted to share something that I found to show what type of person that Jenny is.  As most of you know Jenny has gone back to school to become a nurse.  To get into school she had to write and essay and I hope that she doesn't kill me for this but I wanted to share what she wrote to all of you.

To Whom it May Concern:
Five years ago I would've said that I would never consider nursing as a profession. Nursing and the science that went with it were not of interest.  In addition, I was sure I wouldn't be able to handle the guts and gore. Then January 25, 2010 came about.

I was three months away from being married, working for a great ad agency on a national account and my fiancée and I had just finished building our first home. The events of that day set my life on a new course and changed me in ways I never thought possible.

Tim, my then fiancée, went in for a colonoscopy after experiencing frequent bouts of indigestion. We were so sure that it would turn out to be nothing that I went into work and Tim's mom took him in for the procedure. I waited for the phone call telling me that it was over, everything was fine and it was just a minor occurrence of something. I kept waiting and watching the clock, getting a feeling of foreboding deep within my gut that something was really off, then the call came.

Through a hazy and drug-induced fog, Tim told me they found a tumor and they were pretty sure it was cancerous. He was already booked to see a colorectal surgeon that afternoon. At that moment my entire world crumbled at my feet and I would later find that there were worse moments to come.

We were still in the midst of preparing for our approaching wedding when Tim had his colon resection on
February 3 and kept ourselves busy during the long days in the hospital by putting our invitations together. They removed two feet of his colon along with ten lymph nodes, eight of which tested positive for cancer. We made it through the crushing news that his cancer was Stage 3 two days post surgery and we struggled through the next month of his slow but steady recovery.  I slept on an air mattress right next to our bed helping him with mundane tasks ranging from getting out of the bed to showering to going to the bathroom (so much for the idea that the mystery leaves after the marriage begins) as well as fumbling our way through the post surgical side effects, many of which we were never warned about and instead "enjoyed" the trial by fire approach.

 Tim had a port placed two weeks later in preparation for chemo and we made it through him talking throughout the entire procedure (and according to the scrub nurse, apparently sharing all of my secrets) even though he had enough medicine to "knock out a horse" as per that particular surgeon as well as his extreme discomfort and adjustment to his new life with a port.

 March 3 Tim started chemo, twelve rounds of FOLFOX between us and freedom. We had our wedding on April 10 and though there was a cloud hanging over us, it was an unbelievable day. We struggled, but made it, through twelve rounds of chemo with the fanny pack pump that is my bed sharing nemesis to this day. We celebrated the end of Tim's chemo along with his 28th birthday in August and we thought we were finally at our happily ever after.
On November 29 we met with Tim's oncologist to get the results of his PET/CT and to find out why his CEA had been trending up. We got the worst news imaginable, news that still rocks me to my core to this day. Tim had mets in his lungs.

I'm not entirely sure what happened in the minutes following, it's still a confusing and painful blur to try to remember. I do remember Tim asking what this news meant for his prognosis. The answer was two years. November 29, 2012.

The next two years went by with a few ups and lots of downs. I learned not to get my hopes up but also not to be discouraged even when the news was bad. I learned the patience of waiting for the cure to come, to celebrate every little victory then to get back down to business, humility in the face of tremendous adversity and I learned (and am still learning) how to know when to ask for help. Throughout this journey I have also garnered a hard-learned lesson that Google and doctors and statistics don't always have every answer and that sometimes unconventional treatments such as massage, acupuncture and nutrition can be the turning point of a situation. I've also learned just how much of a role that the mind and spirit play in the healing and survival processes.

We are now almost a year past November 29, 2012, a date we now refer to as Tim's "expiration date". Though treatment will be ongoing for the foreseeable future he isn't yet showing signs of slowing down. I had a tremendous amount of anxiety as the date approached last year, this year isn't proving to be much different, but the anxiety is slowly starting to be accompanied by a sense of celebration that we've made it that much further than was anticipated.

Our original goal, back in November of 2010, was for Tim to get past November of 2012 no worse than he was at that time. As the years pass we both have a few new scars, not all being physical, but we also have a new sense of purpose. Each year the goal will continue to be the same until the cure is found. In the meantime we've made it through countless
 midnight ER visits, high-grade fevers, low neutrophil counts, a lung biopsy, a trial drug, consults up in Chapel Hill, a particularly bad case of colitis while in New York City that resulted in Tim lying on the floor of the LaGuardia terminal prior to being rescued by EMS and a sliced pinkie finger requiring a few stitches and lots of Ativan (which unfortunately for the rest of us didn't kick in until he made it home) and watching friends from chemo lose their battle with the disease.

Through my husband's illness I've faced challenges that I never thought I could handle, yet each time I make it through. We've taken the approach of enveloping this portion of our lives and treating it no differently than any other regular obligation we are to fulfill. What started as, and still is on some days, the worst life can offer has also given us tremendous opportunity to learn, grow and educate others about this disease.
The knowledge, challenge, and experience of working with Tim through his treatment brought about a great interest in nursing as a profession.  I have learned how compassionate concern of nurses and other medical staff has made our journey bearable with some of those figures becoming our closest friends. The amount of knowledge that I have amassed in three short years as a caretaker pales in comparison for what I have left to learn as a nursing student but I am incredibly excited to get started on this newest journey.

Throughout Tim's course of treatment we have both continued to work full-time jobs as well as helping to raise over $67,000 for Greenville Health System's iTOR through our foundation BrightLife,, in just two short years. This fall I decided to challenge myself a bit more by taking three prerequisite classes and currently hold A's in all. It hasn't been easy and I may have claimed that I wasn't going to make it through a time or two (or ten) but I'm almost there.

I can only sit back and read that with a tear or two beginning to form and say that I have an amazing wife who has stuck by me and has been my rock to lean on for the last 4 1/2 years.  It is not easy being a cancer patient but it is just as tough to be the caregiver.  I am not a very good patient so for Jenny not to have strangled me by now is pretty amazing and she will have no problem dealing with anyone else.  

To to this I say a HUGE HAPPY 30TH BIRTHDAY!!  I love you more each day and thank you for always being there when the times get rough.  I know we have been through a lot but we will make it out the other side much stronger.

I hope everyone has a great weekend,