Thursday, November 26, 2015

Thanksgiving 2015: Why this Holiday has my Heart

Well, typically we write a Thankful for piece as an exercise to keep Tom and myself reminded of all the good things that have occurred through the year.  I haven't posted since Tom passed and I have mixed feelings about this, but I thought the exercise might work again.
WARNING: It's gonna be a long one.

A quick note about Thanksgiving:  After nearly 9 months of eyeing him and chatting him up in Starbucks, 8 years ago I got Tom to swap phone numbers with me as I invited him over to my apartment to have Thanksgiving.  A side bar to mention is that after closing and then opening the store that day, I somehow found myself with a case of laryngitis and had lost my voice... which meant when I called as I got home I was whispering through the phone "hello??? I'm not being creepy, I've just lost my voice."  .... why he still came over I don't know.
We ended up in a turn of events spending Thanksgiving at the movies watching Dan in Real Life at the Del Mar Theatre.  On the way there in his super cool subaru we were talking about where we come from and how different our hometowns are to Santa Cruz... one of the main things being the amount of homeless people.  We get to downtown Santa Cruz and park in this parking structure and a homeless man stands up and starts walking straight toward me asking me for a quarter, which truly I did not have.  He continued walking toward me and going on about kmart and cardboard boxes, Tom steps in between (finally) and the man grabs him by his jacket and says to Tom "Hey that's a nice jacket" and Tom pulling his arm away said "thanks, I know" and we started walking off and the man said, "That could keep me warm" and for all of you who know Tom I am sure you can hear the following response quite well, "You're alright, It keeps me warm."  to which the man responded, "Don't worry... I'll keep an eye on your car for you..."    To this day I am shocked that Tom didn't immediately go move his car and was okay with simply muttering obscenities.  Ah, and that's how I knew it was love (just kidding).

Since then we have never had a Thanksgiving apart, traditionally spending it at my family's and in the last couple of years having them come to ours due to Tom's health.  Last year we hosted a friendsgiving and Tom really loved that and we were looking forward to making it a new tradition, so thank you all for coming.
It's going to be a long couple of months going here with our favorite holidays, family traditions, his burial, and then his birthday.  There's going to be a large piece missing today of him arguing with me about how could I not love my mom's candied yams and then also being Kathy's biggest fan in the family for all of her appetizers and pies.

Things I'm Thankful For.

1. I am thankful for the fact that Tom and I got to get back to England for him to see everyone he could in a short three day span, he described it as a bitter-sweet tease because he loved and missed everyone so much, but we were so happy he was able to do it.  We even fit in a rugby match to watch his beloved Giants!

2. I am grateful to so far into my master's program and holding a 4.0 thanks to the support and excellent scholarly model Tom was. I'm also thankful for the friendships I've made within my program, such a band of great support.

3. I am extremely grateful for the new job that I got also at the push of Tom when I had no PTO to make it to the interviews he helped me feel comfortable suggesting other times and working it around his doctor's stuff.  He was so proud of me getting that job, that last Wednesday when I went to collect my things from my old job he made me promise I wasn't going back there.  I am so grateful that with Tom's passing, my new job allowed me to take as much time as I wanted before starting.

4. I am thankful for our discovery of how delicious sushi is last year (I know this seems incredibly trivial).  We both never cared for it and then one day the light bulb came on and in the last year we have had so many impromptu sushi dates and I loved every single one of them.

5. I am thankful that his surprise party in July had such a good turn out for how short notice it was and I am so grateful that he got to see those who could make it!

6. I think the best surprise I've ever pulled off was the birthday card extravaganza.... If there was ever a way to celebrate what I didn't know would be his last birthday, I think we did that well so THANK YOU to all of you for absolutely FLOODING that hospital room with cards he felt so loved and appreciated.

7. I am thankful for the band of brothers I've somehow now inherited that are Tom's awesome  friends.  If there's one particular trait I miss in my daily doings it's the guidance that's somehow also balanced very delicately with harassment and teasing and I think somehow you guys do a good job at filling some of that in.  You lot have helped guide me through more than you'll ever know. It might be appropriate to also throw into number 7 that I think watching the Giants this year was really awesome too!

8. I am grateful for all of the continued reminders of how loved and supported I am and how blessed I am to know that I'm not alone despite how lonely it can be.  Thank you everyone, for your calls, texts, emails, time spent... I am very blessed.
Jordyn I am forever grateful for you not batting an eyelash at moving in and filling my house with laughter and love.  And in this same spot I also want to throw a shout out to Jenny and Chris-- the friendship we struck up with you guys was also a God send.  I don't check in enough but I can't even tell you how much it meant to Tom to have someone to run around with during the day and have projects to work on and to just feel productive and useful.

9.  Tom worked really hard on finding me a car in July and I mean really hard.  There are still note sheets around the house with his writing of the like 10+ dealerships around Northern California that he had called... he researched what was best, had me go out and test drive, he was so so so determined to make sure that we got what I really wanted down to the point that he was upset my #1 color of choice (which seems a silly point with me being color blind) was no longer available anywhere he felt like he'd failed-- though far from it.  We had a lemon of a vehicle before and nothing but problems with it in the two years we had it and the warranty was up in August so I absolutely appreciate the time he took in finding me something that's perfect for little old me... and a million times more gas efficient than an 8cyl SUV.

10.  Ultimately, the thing I should and do try to focus on most is how grateful I am to have had these last 8 years... essentially my entire adulthood to grow as person with my best friend, to share life no matter the adventures and the challenges, to have someone at my side who absolutely no matter what had my back against anything... I am so incredibly thankful to have been shown how much my heart could stretch and trust in another human being and to know what it felt like to have all of that filled with reciprocated love, respect, and adoration for one another.  The last three years of walking side by side as he battled endlessly to continue on were something else... I never thought such grace existed as what I witnessed in Tom.  In both our lowest moments through these years we have held each others hands; cried it out with one another; had our one day pity parties where we'd watch crappy movies, eat lots of ice cream and usually pizza, and just tell each other its okay to feel shitty sometimes; we were always each other's #1 support and #1 fan.
      This last year has been very tough... very, very tough.  In January the doctors told me they just weren't sure there was much they could do, he was the most beaten down by the chemo he ever had been and it was rough... but he soldiered through and when he had to go into the hospital for something else one of the doctors told him that he just continues to amaze them and that they didn't expect to see him come out of it.  In complete disbelief he looked at me and said "What's he on about?"  I told him then that I had actually had a sit down conversation with his parents and Andrew in Joe's Crab Shack because the doctor's were so seriously concerned in January and look... here he was proving them wrong, per usual.
     Having said that, we knew that if he had to have more chemo it would probably be it... each time is harder on the body and Tom was very clear that he was not wanting that to be how we went.  When they gave us the news on Monday Aug 11th, The world collapsed beneath my feet and Tom as stoic as ever just asked the doc what he could do and said he wanted to continue fighting if possible. Never in a million years did anyone see it manifesting so incredibly quick.  Wednesday night the docs told me and his brothers it was going to be hour by hour... they didn't think he'd make it through the night. Tom made it through two nights, which allowed his family and some friends to visit when he could still hear and reach out and hold hands. That's what this number 10 is leading up to... even in the way that Tom left this world and onto the next, he did it still with his hard-headed will and determination. He did it his way.  I am so thankful for how hard he fought these last three years, and I can tell you all it was an uphill battle 99% of the time for him.  I just keep reminding myself that pain is from the love I gave and the missing is from the love I received, both were more than I ever thought possible... and while it sometimes hurts beyond imaginable description-- I am the most grateful and thankful for everything that I had and shared with the best human being I think to have graced this planet.

Told you it was long. Happy Thanksgiving to you all!  Thank you for always giving me something to be thankful for. <3

Saturday, August 1, 2015

August 1st, 2015

Hey everyone,

So Tom was let out of the hospital after a few days (I believe he came home on the Wednesday so he was in the 17-22nd.  Following that he had to go in daily as his levels were still all over the place and his doctor was on vacation.  This week his doctor returned and we saw him on Thursday, his doctor let us know that the liver biopsy was confirmed by UCSF as having some chronic graft vs. host disease which is what we wanted.  He did say however that there was not a lot present so they aren't entirely certain that it explains his liver levels being all over the place.  The liver biopsy also showed no damage from meds, no leukemia, and no detectable viruses or anything so it seemed all good. :)

During the last couple of weeks Tom has been placed back on immune suppressants as well as three types of steroids which they are going to start tapering him off of as they also raise his blood sugar and just make him feel terrible all around.  He also has a virus which is not making things any better so the poor guy is getting hit from all sides, but hopefully as they take him off off of everything some of these side effects will subside.

This coming Friday he will have the bone marrow biopsy so all fingers and toes crossed, prayers said, positive thoughts put out there that for the first time he can get passed his six month biopsy clear.  We are hoping that with the verified graft vs. host everything will be clear.

In other news, I have accepted a new job this week so in two week's time I will be starting a new job that will have future possibilities as I finish up my master's in marriage and family therapy and professional clinical counseling. I am super excited about this new adventure! Hopefully the good news continues on for Tom :)

Thanks for staying tuned and continuing to encourage and support Tom.  It's been a long three years but we could not have done it without all of you cheering us on!

Thursday, July 23, 2015


Today marks three years from when Tom went to the doctor with his symptoms-- two more days will be his diagnosis date. Three years!!!! I'm not sure that time has "flown" but it sure has passed by and we are grateful to all of you for not growing bored of Tom's journey and continually rooting for him and supporting us in various ways to help us get through, thank you!

Tom is home from the hospital as of yesterday (thank you Jenny for picking him up and keeping an eye on him for the day).  The steroids they have him on for the GVHD are creating blood sugar spikes so that's been worrisome.  They sent him home with medication for that as well, but in the middle of the night he woke up feeling hyperglycemic (jittery, warm, head felt funny). The steroid also retains fat so poor Tom will be blowing up a little bit, which I guess will change the concern they had about him having lost about thirty pounds so quickly.

We still don't have a clear answer about the liver biopsy results from UCSF.  It was mentioned to Tom by a doctor (not his doctor) that it was confirmed CGVHD (chronic graft vs host disease), but the paper he handed Tom as if it were the correspondence of the results was actually just a paper from Sutter themselves with the preliminary results and that they were sending it out for further opinion. So hold tight, we will keep you informed.

Tom has enjoyed getting more than 20 minutes of sleep at night, probably helps to also be in your own bed and not the hospital bed which is too short for him (seriously). Today he goes in to the infusion center for an appointment and again Saturday so hopefully we'll get some answers about how to better handle the blood sugar and if they've actually heard from UCSF.

Stay Tuned.