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.

Thursday, July 16, 2015

Long Needed Update

Hey guys,

It's been pretty uneventful (which is good).  Tom's just caught every bug I could possibly bring home from the daycares that I visit, but other than that there hasn't been much to report.  They never did the 60 day biopsy because things seemed good.  They weren't seeing any Graft vs. Host Disease (GVHD)  so they were going to do another donor lymphocyte infusion (DLI) and at the last second Tom started showing some signs of GVHD with his liver function so they held off and that's where the fun has started.

His liver function tests have been all over the place, then he started with the typical hand and foot rash/itching, and mouth sores again.  They put him on prednisone and had him start a dexamethasone rinse for his mouth (both steroids) to try and get the GVHD in check.  With some recent check-ups the liver function did not seem to be bettering so they have scheduled a liver biopsy- which he is actually getting prepped for right now as I write this.  They also started him back on an immune suppressant to try and get the donor cells to calm down.

Today we went in to the doctor prior to this liver biopsy and the Tom mentioned the stomach problems he's been having and the doctor wasn't thrilled about that.  Well, that and the minor detail of Tom having lost like thirty pounds in a couple of weeks (Ladies- it's not a diet I'd recommend).  Doctor Carroll was not so stoked about this news of 8 pounds lost in four days and the stomach issues so he said it sounds like the GVHD has spread to the gut which is very concerning.  Due to the concern of the spread and also that his meds aren't being absorbed to combat the GVHD he is actually getting admitted to the hospital tomorrow so that he can get IV meds to get this all under control.

The Plan:

Dr. Carroll said that it shouldn't be a "long" stay, but that it could be a week or more to get his GVHD  under control, have an idea of what's going on with the liver, get his liver function back on track, etc. In the meantime... I sill have to go work (boo) so since he won't be on chemo and super miserable (just very bored) I thought it might be worthwhile if anyone is available during the week to hang out with him?  Tuesday night I actually have class so if someone is available in the evening that would be good too.  Tom also loves food from "the outside" haha he can't do spicy or acidic but would love to have some food dates (who doesn't).

The Good News:
We have been hoping for GVHD.  The liver biopsy is just to confirm and to also check for any infection or side-effects from all the meds.  The doc said it's highly unlikely and he doesn't expect to see leukemia cells (because we're certain this is all GVHD) but that they check for that too.  So just getting a hold on all of this will mean that the GVHD tends to keep people in remission so this may be the answer to our hopes and prayers.  Let's hope he can get balanced and under control to make this a short stay.

Did I mention today is our anniversary? This boy just has a determination to not enjoy our anniversary! (Maybe I should take the hint-haha).  Tomorrow is also his one-year anniversary from his second stem cell transplant!

Prayers for a smooth and speedy recovery appreciated.  :)

Friday, March 6, 2015

Results and DLI

Hey everyone, sorry for the delay in updating the blog.  So we've been home since February 8th.  Tom had his 30 day biopsy and he is Leukemia Free but due to the certainty that with chemo alone he won't stay there, they've done another donor lymphocyte infusion (DLI) Thursday. They're hoping they'll be able to get some more GVHD out of giving him these donor cells, though we aren't likely to know for a few weeks. Tom will have another biopsy at the end of March or so to check status of remission and % of donor cells and depending on whether he has GVHD they will decide whether to do a second DLI or not.

We got a wonderful banner from an elementary school in Pembroke Maine wishing a Happy Valentine's day. <3 Which just again I'd like to say thank you to everyone for sending over ONE HUNDRED birthday cards for Tom! He'd like to thank everyone for taking the time and thought to do that for him.

Tom is starting to build up his strength enough to venture out for brief periods of time which is nice.  The doctor thinks he may be alright to be on his own in a week or so.  We've had some visitors: Teri and Scott, Kathy, Jenny and Chris, which helps break up the long boring days.

Bit from Tom:

Thank you to everyone both stateside and from the UK for sending your well wishes my way.

Sunday, January 25, 2015

1/25/15 Day 16 : Operation Birthday Cards was a SUCCESS

First and foremost, I just want to say a giant THANK YOU!!! to everyone who sent a card to Tom for his birthday.  I'm sure there are still some trickling in but he definitely got over 100 cards! So crazy! So thank you, thank you, thank you for taking the time to stop and get a card, write him such wonderful messages, and send it off.  Thank you to all those who shared the event as well.  I think there was a strong contention between Sean Coon and Auntie Cheryl for "I'm a friend of ____" comments. Surprisingly, there has not been one repeat card, so I guess you're a very original group! I think Joe Doll takes the cake on that one in terms of finding a store bought card that absolutely no one else would have chosen (considering it was a card for not only just a woman, but of different ethnic origin LOL).  I also think we clearly have a very funny group of friends based on the cards that made their way in. Clearly we also have some rather crafty/artsy friends too as there were a couple of really awesome hand made cards.  Point being.... You are all SO amazing, thank you for making Tom's day as good as it could have been! <3  Jennifer, you should know those blankets you made have come quite in handy! Tom has had a couple of people ask if he's a USC fan and he gets to tell them that no it's the Huddersfield Giants team colors, haha. Also, Helen has greatly appreciated her blanket as well to keep her from freezing in here!

Well there appeared 0.1 white blood cells yesterday (which equals 100)  so he's officially on the board and it was still there today.  His hemoglobin (red cells) were hanging in there and actually did a couple of days of increasing on their own, but today they've fallen quite a bit and he will be getting a blood transfusion along with some platelets.

Poor Tom is at the point where the lining from the mouth all the way through the digestive track is gone so he's pretty sick, especially with GVHD of the mouth/possible gut as well.  Needless to say he has to take pain meds in order to just not have terrible pain in his mouth, but definitely has to take them if he wants to try and eat something.

We don't have a projected date to come home, it may be wishful thinking for end of this next week, but maybe the week after.

Andrew left before the sun was up this morning back to Michigan.  We enjoyed his company, good cooking, and I hear there's a home improvement project of a flood light that he did.  Thanks for coming out and visiting Andrew! Izzy will miss her frequent trips outside (haha).

Speaking of Izzy, thank you to Louie and Kelly for getting her a new "indestructible" (we all know the truth lol) toy for her! The timing couldn't have been more perfect since she had just destroyed her other one! If she could, she'd give you guys two paws up ;)

Simon is coming to visit from the UK next weekend so that should be something for Tom to look forward to!

A note from Tom:
Tom also would like to add thank you for all of the birthday messages, cards, and wishes. He says he's really disappointed that he isn't going back to work and that it was a big blow for him.  It will keep things complicated for a bit longer.  He says that even though it's nearly February, he hopes that everyone had a good Christmas and New Year.  He also wants everyone to know to please feel free to send him messages and stuff on Facebook, but to know that if he doesn't respond right away it's probably just because he's sick and forgetful but that he does enjoy reading them and plans to respond... eventually. 

Saturday, January 17, 2015

January 17, 2015

Well, it's been over a week now since admit and Tom finished up his chemo on Tuesday.  He did three rounds a day for five days which is why they hospitalize.  His counts dropped rather fast which helped in the sense that it eased the spleen pain because the spleen was so swollen with the leukemia, but the quick drop also robbed him of the chance to go home following chemo until infection time.  I suppose at least while in here he can get better meds for pain management.

Poor Tom's battling some serious mouth pain with both the GVHD and the mouth sores caused by the chemo and low counts.  He is in agony most of the time, but is holding off using some of the dexamethasone steroid because the doctor explained how necessary it is for him to have the GVHD, but as a last resort wrote for him to be able to have the dexamethasone.  It's incredibly important for the GVHD to flare up a bit so that it fights any leukemia and keeps him in remission.

He's been at 0.0 white blood cells which is expected, they started with the neupogen shots to increase white blood cells.  Currently we await the expected fevers/infection that typically hit around day ten due to the lack of white blood cells and today is day eight. After his white cells rebound he will be allowed to go home.

In the meantime, thank you to all those who've stopped by to visit him (Alex, Janetta, Lily, Chris, Jenny, Janet, Louie, Kelly, and Andrew who's out from Michigan), and those who've taken the time to email, call or text, and for everyone checking in.  His 28th birthday is coming up this Thursday and (because I know he won't read this) we are hoping to get as many birthday cards from as many people possible to surprise him for his birthday.  I think this would really cheer him up and give him what he needs to get back on track here.  Please message me if you need the address. :) Thank you, thank you, thank you.

Saturday, January 10, 2015

Relapse Repeated. Day 2 of Hospitalization

As the title of this blog would suggest, Tom has unfortunately relapsed.  Knowing how difficult the treatment, they offered palliative care or to go ahead and continue treatment.  So, we asked if we could go home and gather our things so we could go to the Bahamas.  KIDDING! We are sitting in our stately suite in Sutter General. Good news is, they've got the family room open again so we have access to a fridge/freezer, washer and dryer, and microwave... no stove anymore, but hey it's a step up.

The Plan:

Similar to his relapse after the first transplant, they're stopping all immune suppressing meds and doing chemo.  Stopping the immune suppressing meds is to hopefully create some graft vs. host to pop up so that we can get a graft vs. leukemia effect.  The chemo is to get him back into remission.  If we can get him into remission and get a decent but manageable amount of gvhd, they will be pleased.  Seemingly (as we've been told before), Tom just has a very resilient strain of leukemia.  He must be stubborn to the core.  Each treatment as the doc was explaining to me this morning, makes recovery harder and longer, and unfortunately chances slimmer.  So, please keep Tom in your prayers that we can just get him into remission and get some graft vs. host/leukemia so that he can be cured.

Should that step one not work in terms of not seeing graft vs. host,  they will do more chemo and do a donor leukocyte infusion (DLI).  Tom had two of these following his relapse after the first transplant. The point of that is to more aggressively try to encourage gvhd.  So that's plan A and B.  I asked if there was a plan C of possible third transplant.  Doc says that's a possibility but didn't seem too set on that and said that we just aren't going there for the time being.

Admission was yesterday afternoon and they put in a new PICC line (arm access with two lumens so they can run more than one thing at a time).   They began chemo last night and usually he's sick within the first hour (knock on wood) but so far he is doing okay.  As the doc had predicted, the chemo seems to be easing the spleen pain a little bit.  So Tom may be one of the first people to ever find slight relief out of chemo... though now he's nauseas.

So that's that. :)  Alyse and Clayton are going to be stopping by today so that will be nice.  Marc and Eric will be coming by tomorrow so it seems we'll have some company to break things up a bit.  Oliver has come up for the weekend as well to visit with his big brother.  :) We are so thankful for all of the supportive texts, calls, messages on Facebook, and emails.  It's extremely heartwarming and actually made me cry periodically yesterday as I read all of your wonderful notes of encouragement and support. We are truly blessed and lucky and to have such a great amount of support from our friends and family. Know that you all make a big difference in our days.

Wednesday, January 7, 2015

A lot going on recently 01/07/15

Happy New Year everyone!

First post of the new year is unfortunately not a wonderful one.  Tom's platelet count has been dropping over the last few weeks and on Friday the 2nd he spiked a fever in the afternoon.  We took him in to the infusion center and they were concerned about the dropping platelets and lack of other presenting symptoms with the fever, so they moved his scheduled bone marrow biopsy up by one week.  They had mentioned that if his platelets had began to recover in the meantime they would hold off on the biopsy until the original scheduled date because they would assume it was all attributable to an infection.

Tom took it easy the rest of Friday and then Joe came down to help tom out Saturday-Sunday.  We had a great Saturday evening down at Pearl and Anthony's for game night and the fever seemed to have subsided.
Sunday around lunch time Tom had a pain in his left side by his rib cage that went from a slight annoying pain to a crippling one in a matter of 20 minutes or so.  We went to the ER and spent the afternoon to early evening there and the generous Jennifer dropped by to deliver us some much needed food since we didn't end up making it to lunch (sorry Joe! We swear it wasn't an extreme way to get out of it! haha). The docs did a chest X-ray and non-contrasted CT scan thinking that the pain sounded like possible kidney stones.  They took blood labs, urine sample, the whole 9 yards to check for any kind of infection.  It all came back clear and while that meant no kidney stones or infection, they said that meant it could possibly be a leukemia relapse. They told Tom it all just came down to pain management for the time being and sent us home.  Tom was concerned about what would happen when the pain got too bad again and they told us to simply come back. We got home around six just in time for my mom's arrival (she came to keep Tom company for the week) and Tom took it easy with lots of pain meds.

At about midnight Tom's pain level got intolerable again so he took some pain meds and waited a bit. When that didn't help we called the ER and headed in again and were there until about 4:30 am getting home just before 5am.  This time they mentioned that earlier's CT scan showed an enlarged spleen and they decided to do a CT with contrast.  It came back and basically just showed that the spleen was still enlarged.  The doc on duty at that point said that he figured that's what was causing all the pain and that unfortunately since they weren't seeing any possible infections or causes, it was possible it could be due to relapse but that the only next step would be to do the biopsy on Tuesday and for the time being just try to manage the pain.

Tuesday came and we went in for Tom's doc appointment.  His platelets were 58 the previous Tuesday, 38 on the Friday, 28 on Sunday afternoon, and 26 when we went in at midnight Sun-Mon night.  Tuesday his platelets had stabilized and not gone up or down so that's good, right? His hgb had also gone from 15 something the previous Tuesday to 12.7 on our midnight ER visit and this Tuesday were back at 13.3 I believe... so that must be good too.  So while the docs are very concerned that there is a high possibility of relapse, it may still be possible that there was some kind of virus or infection that caused the drop in counts and spleen enlargement.  Tom's pain level is still present, but nowhere near as intense and when it is intense it's not for long periods of time he says... so that must also point to the spleen lessening in size... though I'm certainly no doctor, just a worried wife desperately looking for alternative answers.

Due to the high level of concern, the doc has apparently "made a phone call" to get the biopsy results back sooner than normal so we will receive them on Friday and I will have a much shorter blog update for everyone.

Thanks for hanging in there with us, rooting us on, praying for Tom, and keeping us always in your good thoughts and intentions.  Please keep your fingers and toes, thoughts, prayers, and well-intents going for results to be clear of leukemia and for this to have just been something else that he's already kicked.

Also on a side note, Tom's bday is the 22nd and he'll be a whopping 28 so let's hope he's able to ring in this next year with good help and lots of fun ahead. :)