From Chemo Wife to the Dreaded other "W" Word

With an infinitely heavy heart, it's time I make a point to post that my husband passed away just over a month ago.  The pain seems to grow each day despite being told it gets better over time.  Forget the hole in my heart notion, there is an absolutely massive void in the essence of my being.  I can feel it in my chest and in my stomach, I just feel like someone is ringing me out like a used rag.  I thought I'd run out of tears at this point, but now I sit here with an excruciating headache from the amount of crying I did today to accompany the panic attack that I had.

Nothing can prepare a person to go through this.  I think I've been kidding myself as I put on the brave face and discuss how "beautiful" his passing was with all things considered.  While it is true that it was beautiful, I still feel so incredibly robbed.  I can't live in what-if's but I am definitely present in a place of wishing that wishes could be granted and I could have had one last conversation with him, one last hour to hold his hand and look into his eyes and kiss his cheek, and run my fingers through his beard.

I wish I knew when this would get better, when the things we enjoyed together won't flood me with pain and intense yearning for him, and instead will make me smile remember how much we loved sharing life together. If someone could say "by ______ date all of this will be easier" I think that would be so helpful... right now it just feels like every single day is more painful than the last and every day seems longer, more empty, more lonely, and more distanced from the life I shared with my amazing husband.  It all just happened so fast.  Monday he was told it was back and they couldn't treat it and by Wednesday night he was immobile and on life support and unable to look at us or speak.  I've lost all my voicemails I had saved from him... I get so wrapped up in worrying about forgetting him that I think about it and remember him so vividly that it floods me with pain and yearning for him.  Yearning isn't even the right word to describe the intense emotion I have when missing him, every literal ounce of my being aches for him... every last bit of me.

I don't want to "be strong" and I'm not strong, I get "reminded" that I'm "strong" and that I'll make it through, but I just want it to be okay to hurt like I do and I want the hurt to happen so that I can get through it but at the same time it is so indescribably painful that I can't bear to put myself through it so I do my best to stay busy and out so that it forces me to be "brave" and "strong"... which in turn means that the very second I'm by myself I'm absolutely falling apart.  It is a super vicious cycle, I don't want to feel that pain so I make sure I'm not alone, but because I am so busy and don't allow myself that time it becomes that much more intensified when it does happen and then I end up driving on the freeway having a full blown anxiety attack like I did today and just in so much excruciating pain missing him.

I don't know how to balance it.  I don't know how much I need to give myself to get through it, obviously I'm not giving myself enough time when I have these moments because it keeps happening.  I just want to know when it I'll be able to control it more.  I can't be at work and have these random outbursts, I can't really be driving and have them either which is rather frequent... certainly not safe in that situation, but what can I do? I wouldn't wish this feeling on my enemy (not that I have those), this kind of pain and grief outweighs any other.

I miss and love my husband so much, I remind myself that it hurts because I loved him... the more I loved the more it hurts, the more I was loved the more I miss him and I can say loved and was loved more than I ever imagined possible.  I officially feel so lost and out of touch with the world and life at the moment... just watching it pass by while I feel frozen in this place until I can figure out how the balancing act works... just how to allow myself to experience and heal while not losing touch with day to day life. That's the key that I just don't have yet.

sidelining life

Lately I feel as if I have just been present in the world and things just happen to me and I'm left just having to deal with it as it comes.  I feel like my days have just been full of reaction vs. proaction and this has really begun to compound and get to me.  I fear that the defense mechanism that gets developed in these situations is the numbing of feelings in order to mask pain/emotions.  It's really important that without being a cry baby, I be aware of what's going on and how it impacts me.

My husband has relapsed again so we find ourselves back in the hospital (since Jan 9th) which means that I'm at the hospital, go to work, go to school, back at the hospital, repeat, repeat, and repeat.  The in-laws are at the house evening-->morning and taking care of the animals and whatnot which is nice (seriously, a God send because I don't know what I'd do if someone wasn't there to help in that sense) and they keep Tom company during the day while I'm at work, but it's just bizarre to not be home.  I feel a sense of disconnect to my own life at the moment.  I have nothing to do with my house, and obviously I have no part in how the hospital operates; so I take that as it comes with my husband's health status and how he's responding.  Work and school are also of course just busy and everything is assigned to you and full of expectations, yada yada.

Depending on how Tom responds and recovers from all of this, I may only need a small family leave, may end up maxing out on leave, do I end up having to quit? Who knows?! As a virgo and an oldest child, I can go with the flow, but I do require some amount of foresight and a plan in order to be ready to be flexible when needed... and at the moment, that does not exist.  I can't even throw my husband the birthday party I wanted to because he's so immune-compromised! I'm sure, when I think about it, that really it boils down to me feeling very isolated. While I know my family is a phone call away, it isn't quite the same as getting to enjoy the physical presence of familiarity and comfort.  Yes, I have the support of Tom's family and it is definitely the best thing for him to have them here, but I think anyone would agree having your own family there is always better and obviously the rapport is quite a bit different.

It's really hard to explain how even the smallest of things like household errands or chores just provide some sense of normalcy and while it's wonderful to have the support and eagerness of people to help... sometimes you just need to be able to do something that is even remotely reminiscent of what life was like when it was half way normal.  That being said, hopefully tomorrow can be as good as possible.  Hoping to start the husband's birthday off by fetching some delicious breakfast for him because prior to the relapse news I had planned to take him out to breakfast (because we're doing a workshop at work tomorrow night). I've arranged for anyone and everyone to send cards his way for his birthday so I'm hoping that's a great and uplifting surprise for him.

Surely we must be entering into the smooth sailing waters here soon.  You know, the part where he ends up cured and healthy and we can all just go about to where our lives left off almost three years ago and Tom can be a "normal 28 year-old" as he has mentioned.  I can't even imagine what it must be like in his shoes.  I am over here worried sick and frantic about how hard all of this is on him and stressed about his recovery and desperately wishing and praying him to be better and cured... but I don't have to be the one in the hot seat who is likely to be worrying or thinking about what life will look like for others, thinking about how we wish we could have travelled more or done more of whatever, etc.  I could not imagine that.  Things are certainly put into perspective in terms of values in these kind of situations.

Post Second Transplant

Well we've made it through the second transplant and we're told that Tom may be discharged as soon as this coming Tuesday which would be day +19 which I believe is about where he was last time and to say this is the second time he's done this... that's pretty darn good!

He only spent one day (as opposed to the 4-7 they project) bottomed out on white blood cell counts (0.0).  He's been extremely fatigued, has bone aches, and is pretty nauseas on and off through the days, but his counts are doing really well.  He required a lot of blood transfusions last year around his transplant and he's only had one so far this time and two platelet transfusions.  I'd say it's all looking very positive, the doctor seems thrilled anyway.

I've been fortunate enough to be able to be off of work during this time so I only have to leave during the times that I have class, which happens to only be two nights a week.  There's a bit of anxiety surrounding his return home, one being that I'll also be returning to work and having to place a lot of faith in someone else (his brother) to be the caregiver he needs.  Now, it's not that I feel like anyone else is incapable, I think it's more the worry of something going array and me being at work and unable to help.  I'm sure things will be fine and we will definitely make it work... I just hope his recovery continues to be on the up and up and he's soon back and able to do things on his own.

It may seem to go without saying, but I can't say enough how much I pray and hope that this does the trick and he doesn't get any more secondary infections and the leukemia is gone forever and he can just be healthy and live a long and normal life.  I am so fearful of that not being the case but I feel so good about this transplant I think this is the real deal and he's going to be cured. I guess time will tell.

Keeping the Norm

As our significant others go through this journey and us along side of them, we lose sight of the "normal" life.  Most of us at one point took for granted the ability to wake up carefree and go about our days as they came and not have to put too much into it.  We could take on our days and live the adventures it brought.

Now we are constantly worried, no matter how good our patient is feeling: "Did they take their pills this morning?" "Did they bring enough nausea medicine for this trip? What if we end up staying the night?" "Will they be okay by themselves while I'm at work?" "Oh God they're not answering their phone, did something happen or are they just taking a nap?!"  We must now plan our days based on how the patient feels every morning, check their meds to make sure they've got enough, make sure they're set up for their day depending on how they feel (do they need meals made before we leave or do they feel able to serve themselves), do we need a back up caregiver for the day, know that we're in a place they can get a hold of us if needed, etc.

Amidst all of this, we try desperately to grasp at the straws left in our memories of what normal felt like.  We go back to work, we leave tasks for our significant others, we plan things for our time together (that doesn't involve crowds or dodgy food), we try our best to make ourselves and our significant other feel like they aren't cancer patients.  This becomes especially hard around times of important tests/results. 

Tom has a bone marrow biopsy this coming Friday which will let us know if he's attained remission again and if he can go forward with the planned second stem cell transplant.  I'm very torn on the results day.  I've planned a getaway trip to get him (and myself) relaxed going into this transplant.  The day we leave for it may likely be the day he gets his results.  On the one hand, I don't want him worrying all weekend about his results, it would be wonderful if we got great news before leaving.  On the other hand, if (God forbid) it wasn't good news it may just ruin the trip all together.

In the meantime, I've been giving Tom "homework assignments" as he is at home while he's recovering from chemo and getting ready for transplant. Homework assignment number one is that he (the car enthusiast) narrow down which car we will be getting next as our lease is up in a few months.  This has kept him busy with research and on the weekend we went and did some test drives.  This was a fun assignment.  When he's finished with this one, the next assignment is for him to make a list of things to do in the next five years, be it school, travel, etc.  It's been a positive and fun way to keep him busy.

This weekend he and some others will be framing and insulating our sunroom that catches far too much sun. Should make it much more pleasant in here and bearable for when he comes home after transplant and is couch ridden. I have my doubts on his level of energy for this task, but I'm reassured with the amount of help he'll have.  I think this will definitely make him feel useful and good.  It's hard when he feels like he "isn't doing anything" and says he feels he hasn't accomplished anything in the last two years.  It's wildly untrue and last time I checked, beating leukemia is one of the biggest accomplishments I've ever heard of. 

Anyway, this was just some ramblings of some things we do around here to grasp at the olden days of normality, which seemingly is living with no worries.  I hope others have found some ways to do this also.

Guilty Blogging

Blogging... well I started an email list for those wanting to be in touch with Tom's journey through all of this and it turned out I wasn't tech savvy enough to juggle that and would forget people or type things in incorrectly, whatever.  So then I began the Leukemia Log which was to make it an easy location for anyone to jump on and catch up.  It had occurred to me that I enjoy writing and it can be a good outlet for me so why not have a separate, non-publicly-announced blog for myself.

The thought seemed simple and rather ingenious on my part, finding a healthy outlet of my feelings without burdening close ones with them.  Turns out, that because I've shared this location of few and far between ramblings, that I still feel a sense of guilt tied to writing out my feelings even here.
Anyway, it's silly, but that's probably why I haven't utilized this blog as much as I'd once intended.

In any case, should there be anyone following this or reading it, it's been a hell of a road.  I don't even know when I last created an entry here so without going to look, I'll provide a quick synopsis:

-March 22, 2013 Tom had his stem cell transplant
-September 2013 Tom was told at his 6 month check-in that he'd relapsed.
-He's done some more chemo and some DLI's to create some graft vs. host to combat the leukemia, but the GVHD factor never happened, though he did attain remission again in December.
-Beginning of this month, April, we found out as projected by the oncologist due to Tom not getting any kind of GVHD, Tom has relapsed again.

Going back to this last appointment, even though the doc had told us that it was likely this would be the case... we were really feeling positive! He was feeling so good and his counts were looking really good too! The doc said that based on Tom's counts that even he was beginning to hope for the best! We just bought our first home in March and we are so excited about that and we were poised for him to be cleared and released back to work.  I think this felt more of a blow to the ego and hopes than the first original diagnosis.

The first moment we got the for sure news that Tom had leukemia, my heart fell through the floor and maybe even through the center of the Earth it felt so heavy.  I felt like it was the end of the world and I could have cried for a year straight if someone had let me.  However, there wasn't time for that and it wouldn't have helped anyone so I soldiered up and told him it was going to be okay and he was strong enough to beat this.  We took one day at a time and for the first week it felt like each time we saw the doc there was more bad news, but we got through it and Tom did an amazing job at just making this his journey and not focusing on numbers or whatever.  We were new and determined.

This time it felt like the worst kind of defeat.  I immediately fell apart, my poor brother in law was in the room and handed me some tissues.  There was so much sadness, disappointment, heartbreak, and fear filling that room.  Tom kept it together and asked the doc what was next, what he was looking at, what his choices were.  I want so badly for him to be healthy and beat this so he can go on with living a normal 27 year old's life.  I want so badly for us to enjoy our home, both be working again, maybe even have children.  I want my husband to be able to live life without the fear that there isn't much left in it for him or that he will spend it all in the hospital, I want him to be able to envision himself as 80 years old with a lifetime full of wonderful memories. I want to be able to promise him all of this will happen but I can't and I hate that feeling.  I hate that feeling. The feeling of sitting next to someone scared out of their mind and having to pretend you're not afraid too, the feeling of having zero answers in a situation where rationale doesn't exist. The feeling that a hospital feels more familiar than your own home and the word "future" sounds like something only read about in a fiction novel. I hate it.

I also hate that it's understood that I would be stressed and upset but somehow it's almost unacceptable.  Now ponder that sentence, because that really is the reality of the situation for caregivers.  Everyone says, "You need respite too" and "Make sure to take care of yourself too."  But let's really play it out.  What might this look like?  A night sleeping at home?  Well that's going to be filled with worry and no sleep because you get the overwhelming guilt that the one night something will go wrong, will be the night you're not there.  A day away with some gal pals?  Until you're being asked how long you expect to be, when you'll be back, or you're worrying again the whole time and filled with guilt... guilt that you should be there, how dare you be out having tea and reading a book! Your husband is in the hospital for God's sake! That may not be dialogue from others, but it's certainly what goes through your head.  So you rush.  You rush from here to there. You try to fit important calls or paperwork in somewhere along the way, don't take too long at the store, spend every night in the hospital losing hours of sleep so that you miss your exit when driving for work the next day.  The idea of what others might think if you take a day or a night or even an hour... it makes it more relaxing and easing of the mind to not even bother with moments of respite, then a moment of respite would ever give.

And who do you share this with?  You can't share this with the patient, though I have because I get fed up with the comments about me "taking my time" when if I were to have five minutes to myself, I think I'd deserve them!  But really that's not appropriate unless handled delicately so as not to minimize the patient's situation... though delicate probably isn't how I'd describe my outbursts.  My apologies, perhaps.  Because just as we don't want to minimize the role of the patient and their struggles, we as caregivers don't want to feel our role and struggles are minimized either.  The patient just needs to worry about themselves and they should only have to worry about themselves.  A caregiver has to worry about the patient above all others, as well as carry on with themselves and sort things out for the both of them and juggle visitors and normal daily things such as work, errands, chores, etc., all while carrying on like a normal walk in the park... which may be what leads some to think that's what it is.  It isn't.  The story so often told is of the battle of the patients, but there's another battle being fought too and it's fought by the caregiver.  The caregiver has to be a master of being in five places at once to get things done all while being the patient's largest advocate.  To answer the question being asked at the beginning of this lengthy paragraph, I've found that one must be particularly choosy and that it may not be a good idea to put it on someone involved or invested in the situation... the best person in my experience, is another caregiver.  Someone who can really hear you out and then just support you with their understanding.

So to all of those caregivers out there, cheers.  Your role is daunting one, but no one cares for our patients like we do and there's a reason we've been put into the position.  Not just anyone could play this part.


The End.

How things are going... End of 2013

At this point, I believe the last time I blogged was when we found out Tom had relapsed.  Quite a lot has occurred since then.  So the plan then was to stop his graft vs host medicine (cyclosporine) and hope that he gets graft vs host.  Well, he didn't... and to make matters worse, the biopsy yielded more leukemia in mature form.

That day was quite seriously a mess.  I was down in Elk Grove doing an environmental rating visit for a provider (this is roughly 20-30 min from the hospital and a 3 hour visit).  Toward the end of my visit I glanced at my phone for the time and saw that there were multiple missed calls and a few very frustrated texts all from Tom.  What happened? I'll tell you, turns out I left with both sets of car keys so Tom and his mom had no way to get to his appointment. They took a taxi for the ten mile ride which cost $40!!!!  To add insult to injury, they then received the news that the leukemia had progressed, etc. and that Tom would have to go into the hospital the following day.

Long story short, I left straight away, took the rest of the day off and picked up Tom and Helen from the hospital.  We took Tom in the next day which took a lot of convincing.  The goal again was to more aggressively try to induce graft vs. host. They had assured him it would be a short visit with just some chemo and a dli (stem cell top up) and then he could go home... so about a week.

That was all true, he came home a week later and that same night took an ambulance in to the ER with heart palpitations.  The next day he had a date with the doc and the doc said he was going straight into the hospital for monitoring until he recovered ... that lasted four more weeks.  So really in total he had a five week stay. Five weeks!!!! He made it home the Monday before Thanksgiving so we were very thankful!

December 12th we received his next biopsy results.  Tom had not yielded any signs of graft vs. host, but he also yielded no sign of leukemia.  So remission again!!! Only they were/are worried that without further intervention it won't stay this way.  So they had him come in the following week and do another dli with a bigger dose of stem cells and in outpatient.  Because the first time they did the dli he had shown leukemia cells, they had to do chemo, but because he is now in remission there did not need to be more chemo.   So now we sit and wait and hope for enough graft vs host to happen to do the job, but not so much that he suffers any harm.

The bright side is that this year he was home and feeling good for both Thanksgiving and Christmas.  So lots to be happy about.  There is however a lot of anxiety in the air about whether this will work, planning for the future and trying not to think too much about what-ifs, my grandmother is in the hospital (I just found out) after recently receiving a pace maker... my work is about to have the state on us and deciding whether or not we are worthy to maintain our contract, just so much.  That said, tomorrow is New Year's Eve and we can only hope for a 2014 with wonderful news  and happy events!

Just When You're Feeling Confident

So today was my husband's six month post-bone marrow transplant results from the bone marrow biopsy they did a week ago, Friday.  That's a sentence and a half.  Going in he was of course understandably nervous, as he usually is with doctor's appointments these days.  Today we were both rather nervous as this set of results sort of paints the picture if you will of how the rest of your recovery will go.

So to really set the scene, we were a couple of minutes late because he spent the morning in immense pain from some sort of nerve issue going from the back of his hip down his leg.  This issue actually called for a trip to the ER on Saturday which was just to waste four hours of our lives, be informed that he didn't have a fractured hip (which we had never suspected in the first place) and being sent home no wiser than we were upon arrival.  So it carried on and this morning he was in a lot of pain.

We get to the office and they have you arrive an hour early to do general labs before an appointment, Tom overhears someone get told the lab is running about forty minutes behind... great.  As if the anticipation isn't working up enough anxiety as it is... his appointment was already for 11:30 which meant a large chance of them "going to lunch" and us having an extra hour of sitting there.  Luckily for us that scenario didn't happen.  We got called back probably forty minutes behind schedule, but better than an hour and forty minutes behind.

Dennis (the assistant of some sort) starts by taking Tom's vitals.  In between his random comments the only thing making a sound in the room is the rumbling of the air vents and Tom tapping his foot rather quickly to ease the anxiety.

The doctor comes in and starts with some small talk, asking about the weekend and then going on to discuss Tom's back.  I can't speak for Tom, but I know my inner dialogue was screaming, "Just tell us the news already!!!! We can talk about the reptile show afterward!"  So after his small talk there was a rather awkward pause.  The doctor sits in his short wheely-stool and looks at his notes.  He starts off by telling us that Tom's biopsy showed a 99.08% donor cell read (down from what was I believe 99.97% or so), but said that for this time frame post-transplant that 99.08% is also good.

Then came the big news... the biopsy yielded some leukemia cells. Tom's head just dropped in sync with my heart. He said it was less than 1% and that they were early developing cells only caught by a certain protein they had on them.  Ordinarily (if it hadn't been for said proteins) they would have been dismissed as normal "young" cells. So I suppose there's a slight bright side.  He feels confident that with it being so early and so few that it's treatable.

The treatment plan might be a bit sketch, but I suppose what are you gonna do?  The plan is to have Tom stop his graft vs. host medicine and purposefully induce graft vs. host disease.  The idea being to have the immune system pipe up and fight these abnormal cells.  He feels confident that this will do the trick.  It will just take close monitoring of Tom in the meantime to make sure that it doesn't get out of hand and shut down any organs, etc.

In about a month they'll do another biopsy to see where he stands.  If it hasn't done the trick it may be necessary to follow up with some chemo and possibly to top up with some extra donor cells.  Let us hope it all works in such a clean and straight forward way as the doctor has laid out.

It's hard to not try to force some sort of rationalization onto all of this, but it's the hand we've been dealt and we'll keep playing forward.

The Transitional Period

So here we are, for the most part Tom is doing stupendously well (knock on wood).  The doctor is so pleased with his progress thus far and has said if things continue he'll be back at life in no time really.  That said, he's just finishing up some pre-cautionary intrathecal chemo treatments (in which they do a spinal tap and withdrawl fluid from the lower lumbar and replace it with chemo drugs).  They do this because sometimes leukemia has been known to "hide out" in the central nervous system and come back later.  Luckily, Tom has never had his spinal fluid that they withdraw yield any leukemia (again, knock on wood), but they do a number of these treatments just in case there's even one in there and they can get it.

That said, while everything else is doing well, these can sometimes result in a spinal fluid leak causing immense migraines at the change of position and vomiting, etc.  So since Monday (number 2 of his last 5 of these treatments) he's been feeling immensely awful.  He's unable to do anything but lay down which is of course no good and sitting is definitely the worst, but when he stands these powerful headaches rush to his head and send him dizzy with pain.  So there's a lot going on and it's trick as the meds don't help when it comes to quick come and go pain like that.

So anyhoo, he has three more of these joyous things to do.  In the meantime, he was doing so well and is doing so well (as it's only due to these treatments that he's poorly) that I began the job hunt.  Today I officially accepted an offer (after turning a couple down).  Part of me continually wonders if this is a good idea, but then part of me thinks I won't know if I don't do it and I suppose I could always quit but if it's working out then we'll have some extra money and it'll get me out of the house.  Tom is planning to spend his spare alone time possibly volunteering with the leukemia and lymphoma society since he is one of their honored heroes for the local fundraising walk this year.  It's a strange time. 

I've officially let my manager of the store I was working at for Starbucks know that I won't be actually coming back and so after 7 1/2 years of employment that's kind of bizarre.  From High School through College and then some... Life beyond the barista apron should be interesting, not to mention pricey if I find myself needing an extra pick-me-up here or there.  **sigh** I suppose this is all just part of the process, sort of a rebirth of life for us and we're trying to find our feet and figure out how to make this all work out.  It's a bit nerve racking but exciting at the same time.

That's me done today.

Time for the Next Chapter

So on Friday I'll be officially released back to full duty at Starbucks... of which I don't plan to return so today I let my manager know and I suppose that means my black apron has been hung up for good.  Super bittersweet as some of my best relationships or inspiring moments happened through Starbucks, December would have marked 8 years of employment (though I've been on leave for almost a year).

Part of me felt that I was ready to go before Tom's diagnosis so I should be okay with going now, part of me feels like it's been awhile coming but it's such a part of me it was too hard to leave it, and part of me feels like this has been one heck of a year and maybe starting completely fresh is what's needed for this next chapter.  We've both been doing some recovery, me for my hand and Tom with his leukemia/bone marrow transplant, it just seemed like good timing.

So what's next? That's a fantastic question.  I have a few irons in the fire and I think in the next two weeks I'll have the more solid answer to that, but it's exciting. Lots of ideas to play with, plans of action, etc. Not only did the doctor tell Tom that he's pleased with him, but apparently if he gets through these next three months alright (making it to the six month mark) he'll be over the largest danger zone. He even went as far as to say that Tom could probably travel after that time as well (when originally he said it'd probably be more at the year mark).  So that was really awesome to hear. We are so blessed and so lucky to have him doing so well, we've heard of a few casualties recently and really there's no rhyme or reason so we are so blessed to have been on the other end of those statistics (knock on wood... let's hope his good health continues).

I think his attitude has had a great deal to do with it, but having said that one of the ladies who was smashing everyone's records has now lost complete feeling through her body and also her sight, rendering her back into the hospital.  Things like that are frightening.  They even had her go to UCSF for some extra opinions and whatnot and they just said it must be from one of the medicines that was used. Apparently another guy had the same thing happen to him and has only recently (a year later) regained those things and is receiving therapy to work on coordination, etc. I couldn't even imagine!  So we are so unbelievably grateful for Tom's well-being.

Anyway, enough about him! This blog is about me! Like I was saying... I'm really excited.  I'm considering a part time job and mixing it with grad school and I'm also interviewing for a full time position as a site supervisor that would be good, so we'll see!  Prayers appreciated! I'm excited about this new chapter.  Tom doing well and nearly finished with all of his treatment, new job for me, he might start volunteering... I think this year has a lot of promise left in it!

Girl's Date and Relieving/Fantastic News

So first off... Tom's biopsy to find out why his counts had dipped were to be in for Monday.  To clarify, the doctor was rather concerned that Tom's counts had dropped due to a return in leukemia or the possibility of graft vs. host disease.  It was a rather nerve wracking week and a half as we awaited his appointment to find out. Much to our relief, his biopsy results yielded everything well and clear!!!! That begs the question of, "well what was it then?"  The answer being, they're not entirely sure but hey "no news is good news!"  The doctor said it's possible that he may have had an infection we were unaware of that his body just fought off and simple as that.  WOOOOOHOO!!!!!!!

Secondly, Saturday I was treated to such a fun night by Alyse and Ashley in which they surprised me with a painting class where we painted portraits of our dogs! It was so much fun!!!!!

 

It was seriously so much fun! A little place in Folsom called The Painted Cork! We had such a blast! Definitely need to do this more often!!!

 

On top of all of this, my youngest sibling graduated High School this past Friday! We've been busy bees!  I've been interviewing like crazy, so hoping something comes available soon.  I filed my child development permit finally (which made me wonder why I never did before as it was so easy!), got my TB test done, fingerprints done... now just crossing my fingers for something to come through! 

Also, just found out last week that we're going to be an Auntie and Uncle to another Belleci Baby come January!!! So excited to welcome my sister's second baby!

Well folks... there's a blog as happy as I think it gets!  Hoping to host my parents this weekend to finally cash in their "getaway weekend" we offered to celebrate their 25th wedding anniversary in January! So we'll be double downing it and doing something extra to celebrate Father's Day as well. Pretty excited about that!!!!

Now if only we could hang on to some cool weather a bit longer! Last week's 100+ weather was a bit unnecessary. Happy June!

Bummer News... Murphy's Law

So today I didn't go (for the first time) to Tom's appointment as his brother went and I took our other guests out to Old Town Sac where we were going to meet up for lunch.  Tom then called me with the news that his counts have gone down more and the doctor was postponing his spinal tap chemo treatments until he could find out what was going on.  To do this he's having Tom go in on Friday for a bone marrow biopsy to see what's causing the count issue.  The doctor suspects one of two things: 1. the leukemia may be back or 2. Tom may have chronic graft vs. host.

Needless to say, we didn't go get lunch, Tom's now sick to his stomach nerve wise ... and what was shaping to be a rather energetic and exciting day has taken one hell of a turn.  Now we just need to refocus and keep our minds busy for the next week until we know what's going on and have a game plan to focus on.

In other news, I'd arranged a surprise for Tom which was that last night a great friend of his from England flew in to spend the week with us!!!! Let's hope that having Will here will keep Tom preoccupied.

Two posts in two days.. Ah-mazing!

Well now with a delicious cup of brewed coffee at my side I thought I'd blog about something that doesn't particularly have to do with myself or Tom.

When Tom was discharged from the hospital there was a lady in there that was a week behind him transplant wise, but actually discharged less than a week after him.  She was sort of the star-patient having shattered everyone's recent "records" (it was quite a competitive group of patients).  She was doing really well and as far as I know with her labs and whatnot, she still is; However, she did begin to lose feeling in her toes within a week, then it went to her ankle, then up her leg a bit, to her knee, up her thigh, to her hip... and now her arms as well as of a couple weeks ago.  Poor lady can't walk, she can't even pick up her legs to keep from dragging in the wheelchair.  Instead, a nurse wheels the chair while her husband holds up her legs.  They apparently have no idea what's causing it and seemingly must expect that it will pass, but her poor husband seems at his wits end trying to stay very positive (which he hands down does like it's no problem at all) and trying to help his wife regain feeling.  It's crazy to think that here she went from the top to being completely reliable upon others.  That said, please pray for her.

While Tom was in the hospital, his next door neighbor (so to speak) was an elderly lady who'd had quite the complications.  Her transplant had been the week before Tom went into the hospital (I believe... it was definitely before we were in there though) and upon transplant her lungs immediately shut down!  She then spent four days battling to stay alive in the ICU and made it back into the bone marrow transplant ward.  We saw her up a couple of times and her poor husband never left her side for weeks... literally.  He was in that ward for weeks!  He eventually decided to go home for a nap one day and then began taking walks here and there.  In any case, she seemed to be making good progress and when we left they had said they expected she would be about a week behind Thomas as far as discharge.  Sadly, we haven't seen her at all.  A large part of me wants to know what happened... is she still in there or did she unfortunately pass away?  On the other hand, the other part of me I think knows what the answer is likely to be (with a 30% mortality rate for bone marrow transplants) and doesn't want confirmation.  The daughter of Tom's transplant day twin (who's 76 and doing really well) often speculate.  While I totally understand HIPPA laws and the whole privacy thing... I just wish someone could tell us if she'd passed so that way we could maybe offer to bring dinner to the poor guy. I can only imagine, after getting to know him over the month we were in there, how he would be feeling if this were true.  Likewise, if they're still in the hospital I think he could probably use a friendly face.  So, another prayer there please.

Lastly, when Tom was in the hospital for chemo in January, he met a newly diagnosed fella who was starting the hyper cvad regimen (what Tom did up at Roseville).  This guy was so amazingly positive going in and then ended up back in the hospital with a secondary infection (much like how Tom's experience last fall was) and was in for probably over a month!!!!  After just having spent a month in there doing his induction chemo.  He was so sick!!! He was in there through most of Tom's transplant stay even.  Well he got better (thankfully) and we later saw him in the doc's office ready to go in for another round of chemo which also went well, but then again he is now in the hospital and even had to do ICU time up at Roseville (where they live) and I think is still in the hospital.  He's having a difficult time and I know his daughter's high school graduation is coming up soon... so please send lots of prayers for them as well.  Heart wrenching.

This whole experience is so crazy at times.  Tom has certainly had his scares and secondary stays and the amount of times I thought I may lose my husband .... I just wish there was something I could do for these others.  Tom and I were saying how it's such a crapshoot as far as how you end up and it really is!  Though he's made it through the transplant, as I mentioned last night he's now entering the risk zone for acute graph vs. host and then after that little time frame there's another like 9 months to a year of chronic graph vs. host possibility, there's the 40% chance of relapse, there's just so much and when things go well you just wonder if that means you'll draw the short straw elsewhere.  I suppose all we can do is keep hoping and praying and trusting that his youth is on his side, but man is it awful watching others go through these difficult times.  I suppose I've officially made this entry about us now, but I just wanted to make sure that the stories of the others were told and prayers were said.  Much appreciated.  Have a wonderful weekend! We're going on a river tour today with Tom's dad... should be lovely!

Over a month at home :)

As I sit here sipping on a glass of Apothic White wine I thought I should maybe write something more current. So far a lot of positives which is of course really good!  The beginning of Tom coming home was of course as expected: lots of pills (LOTS of pills), lots of vomiting (lots of vomiting), extreme fatigue, etc. We were going to the doctor's on the daily, his counts were doing this and that and we were of course at the edge of our seats asking a million questions... he's been doing well.

In fact, Tom is probably the doing the best out of everyone within his group of transplant patients.  He soon went from every day visits to having a day off, to having two days off a week, to only going in two days a week, and as of this week he may be going down to one day a week starting this coming week!   His bone marrow biopsy came back negative for leukemia and 99.77% the donor's cells and they wanted to see at least 98% so that was great.  He's beginning to have more steady energy and thus beginning to be more "Tom-like" if you will.  It's wonderful to see.

For awhile he had zero energy and was constantly nauseous and vomiting and then he started having a good day here and there where he would be able to do something for a couple of hours, but would then be absolutely wiped out the next day.  Then that cycle sort of became an every other day sort of thing and then slowly the energy level increased to where the energy spurts lasted longer and then slowly the wiped out days faded out... and now he's doing pretty well.  The only down side is he has to limit his sun exposure with long sleeves, long pants, tennis shoes, and a big straw hat... because his anti-rejection meds cause extreme sun sensitivity.

Financially: Whew! We are so incredibly grateful for the love and support we have received.  The folks in the UK have managed to pay most of our medical bills off for us and have had another giant fundraiser tonight.  The fundraiser here in Corning managed to keep us afloat for a few months and essentially leave us stress free!  We are SO SO SOOOO incredibly blessed to have so many wonderful people who love us so much and are so willing to give. On top of that, a slight detail caught my eye on a payment we received from an insurance premium Tom bought into that was supplementing the the state disability.  In any case, going forward they will be paying us what we were getting from the state so we have had that huge weight lifted as well!  God is so good at making it always work out... but we also couldn't have done it without the help of all of our Earthly angels as well.

Going forward:

Moving along, if he continues this way things will be so good.  That said, because he's doing so well they've been cutting back on his anti-rejection meds and whatnot... which eventually puts you at risk for graph vs. host disease as you stop suppressing the immune system.  So typically around day 100 or so when they have folks sometimes stop taking the anti-rejection meds all together, people can develop acute graph vs host... which from someone we know who had this, is about a four day hospital stay and some meds so long as you respond well. So that's a bit daunting... on one hand you're cheering that he's getting to take less pills, but on the other hand you know there's this large ominous cloud awaiting in the future that may or may not rain on the positive parade. Enough of that doom and gloom though it's just merely a possibility, nothing more.

SOOOOOO, because Tom is doing so well, I've decided to start the job hunt.  I had a follow up with my hand surgeon today and I'll be released back to "full duty" in six weeks.  Which gives me six weeks to knuckle down and attain a full time position somewhere.  Only problem is, I was reminded today that while I can be around children and could wash my hands and change my clothes before coming home... if I catch anything off of these children or carry something home with me that I'm immune to... I could be putting Tom at extreme risk. So, I have a phone interview on Monday, a physical meeting elsewhere Tuesday, and Tom has a doctor's appointment Wednesday at which I will ask the doctor if this is an okay thing or not.  If it is... please put in a good word with the man upstairs for Tuesday's meeting.  Great place, great pay, benefits, vacation time, and peers with their BA's rather than the bm (bare minimum) which means it's a place that values continued education and developmentally appropriate practices (or so I can hope).

There we have it... raise your glasses to progress and almost a year of ups and downs behind us and to the last month of up, up, ups and a continuum that direction!

By the way, have I mentioned what an amazing husband I have? He's a pretty remarkable guy. If nothing else, this whole experience has made us really realize how special we are to one another... takes a lot to spend nearly 24/7 together for a whole year and still be going. Not saying I didn't endlessly love him before, but I think everything has just been brought to some different level entirely.  Our whole lives have been put in a different perspective and it's truly wonderful.  Right, goodnight y'all.

Home Sweet Home

So today is +23 for Tom (23 days post transplant).  He was let out of the hospital on Wednesday which was day 19 and that's apparently an incredibly fast turn around.  He did however come out with strep throat, a backwards internal clock, random projectile vomiting, and the expected extreme fatigue.  All of this however is so much nicer to deal with in the comfort of one's own home.  While no one enjoys vomiting, it's nice to be able to curl up on your couch under a nice soft (rather than cardboard textured and thin) blanket. 

Since home, he has made a good effort at eating.  He is still taking a lot of naps.  He has been due at the infusion center daily to have labs drawn and monitored... at 8am.  Dear Lord, how much I am looking forward to tomorrow's appointment being at 10am instead.  We've had a few late nights and obviously some early mornings as it's a bit of an effort to get up and ready and meds sorted all to leave by 7:30 (even though we are theoretically only 10 minutes away... apparently there's a bit of a traffic issue at this time in the morning, apart from weekends).  My favorite bit (she says rather sarcastically) is that the clinic doesn't actually open until 8am and so when we get there, we're sat out in the hall waiting for them to open the doors.  It gets even better, for when they do actually open the doors, even though you're one of a total of three first appointments... no one gets called back for an additional ten minutes.  What's all that about?  Either A. the nurses should be getting there 15 minutes earlier to prepare for the day instead of also at 8am  or B. don't book any appointments until 8:15 or 8:30 as patients (and their caregivers) are a bit tired and it's a big to-do to get him going in the morning to just come and sit around just because no one is ready yet.  Am I asking too much here? 

I'm tired. I've been doing so well, but today I am just flat out tired.  Tom has been having a hard time making the switch back over to being alive during the day, he's been up coughing all night, was vomiting a few nights ago, had incredibly dry and excruciatingly painful eyes that he needed drops put in every 20 minutes or so... but then he naps all day and I do not, so today it has caught up with me.  Let's hope that tonight I get some well needed sleep and hopefully Tom does too because I may be unresponsive (haha).

Lastly, Helen (my mother in law), sadly leaves this coming week.  Not only will I be sad because she's incredibly helpful and wonderful company for the days that I sit and watch Tom sleep, but she also allows for an outlet because she can stay with Tom while I go out or take Izzy out, etc.  Also, Tom is going to miss her terribly.  He is quite upset that his mom is leaving as to him he's only really just got to spend time with her because he felt like a vegetable (specifically a cabbage, in his words) while in the hospital... so now that he's home and she sadly must leave the following week, he's really bummed.  It's a good thing her brother comes out the next week and then I have a little surprise planned for him a couple weeks after that and even better, his mom will be back in June for another month.  So it will all be okay, just always sad to see her go. Can't wait to reveal the surprise, but for security measures I must not share until it has happened.

Now, for a second afternoon cup of coffee.  Oh! Before I forget, check out the leukemia log for photos of the fundraiser! It was such a success and we are so incredibly touched and appreciative for the incredible level of support that we received! Seriously, so wonderful! Thank you to anyone who played any part in that! :)

It's officially the week of transplant!

So it's the Monday of the week of transplant!  Tom has been doing chemo for four days and in just four more days he'll be receiving his transplant!

 I don't know that I've mentioned it before, but before Tom was diagnosed he was at work and not feeling very well and discussing it with a customer.  It was shortly there after that Tom was diagnosed with leukemia and his work put out a canister asking for donations to help us along.  This customer saw the can and went home that evening and told his wife that given the symptoms Tom had been having, he thought he may have leukemia.  He did!!!! A different kind, but what a trip!  What's more, he actually ended up having the same doctor as Tom and he just went home today after having had his bone marrow transplant (his was a sibling donor, so the process was much faster).

As mentioned in my last blog, there was a lot of anxiety for the both of us surrounding this hospital stay and procedure, etc.  When we arrived Friday morning, we went to visit the guy I was discussing above and he literally leapt out of bed to show the doctor the back of his shirt he was wearing! He looked so good! He looked like he did before he went in all apart from having hair. ;P  But it was really comforting.  He only had a total of four "bad" days and they were due to mouth sores.  While the doctor was there during our visit with him and continually replied, "It's different for everyone", and the gentleman would retort, "don't listen to the doc, it's a bunch of bs, it's not as bad as they say!"  If nothing else, it was an entertaining conversation that provided a bit of relief.

That just adds one more person to the bill of people we know who've done fantastically, each doing better than the previous so now Tom's goal is to be out faster than the last guy.  I think he can do it :)  His goal is April 8th.

Tom was doing really well on the chemo, the first chemo drug is done every six hours for a total of sixteen doses!!!!  He did not feel any side effects until about last night.  This morning he was actually sick, but he's still able to eat and is up and around.  The doctor said that it's normal for people to start to feel sick towards the last day of the first chemo drug (just merely from the accumulation of the drugs).  He only has two more days of chemo and the next two days are one that we know makes him sick, but at least we know it will be over in two days and then he has a day off and then it's transplant day!!!! After that, no more poison!!! :)  Things are looking well, keep up the good thoughts and prayers!

My heart stirs with anticipation

Tomorrow Tom is due in the hospital for 7:30am.  That means that I'm sure neither one of us will sleep tonight due to anticipation, but I suppose that means I might get the house unpacked! (slight humor).  Tom is very anxious about what's to come. 

Up until this point, he has done an amazing job at not inquiring about any statistics related to his situation.  Tuesday he had to do his "consent signing" which meant that he absolutely had to hear the "facts" as it were, because he had to sign and say that he knew the risks involved etc.  This was a rather large shocker for my poor husband who spent the following day rather anxious and upset at the rather frightening risks. 

Truth be told, even though I'd previously read the risks and statistics before, it was a bit of a shocker for me to hear it from the doctor's mouth as well. Even though he made it rather clear that he is confident in Tom's outcome being positive, he was also clear that you just can't always be certain.  Yesterday was one of the hardest days we've had.  My poor husband burying his head while he cried in fear of the fact that this could be it and me being completely and utterly useless and unable to reassure him... as how can I promise that things will be okay? 

I instead took the route of putting faith in the doctor.  I asked him if he trusts the doctor and said we need to trust that he's going to see Tom through this and he would have told us if he thought there to be any reason why Tom should be worried other than "off chances".  It weighs heavy on my heart, his fear.  There's nothing I can do to make it ease and I just think about how I would feel in his positon and I don't even know if there is a word that could even convey how that would feel.

I can only hope and pray and put this in God's hands and hope that he provides the wisdom and knowledge that is necessary to the doctor to see my husband through this.  The most frightening thing I think was that it doesn't just end a week after transplant, he's at risk for very serious things for quite a long time! We're talking over a year!  If it isn't risk of the stem cells not grafting, it's graft vs. host disease (GVHD), if it isn't acute GVHD it's Chronic GVHD, if it isn't GVHD at all it's the possibility of relapse, it's the possibility of a reaction to the new cells, it's the possibility of fevers striking when his counts are low and his marrow is wiped out, it's serious 100 different things that aren't only weighing on my mind, but on Tom's and I'm sure they're a million times more heavy for him. 

I must go pack his bag for the stay, so I better get off of here and thinking more positively.  Any prayers for Tom would be sincerely appreciated.

WOW

So, if you read my last blog, let me tell you... the world feels so differently now.  When I wrote that letter I was at the lowest point I think ever in my life.  I felt that the world had literally failed us and I thought I'd be homeless at the end of the month, I thought I wouldn't be able to take care of my husband, I'm pretty sure I may have lost a few brain cells due to stress.  I had a few break downs, basically every time I got off the phone with this organization or that.  But now... now that has all changed.

It took a lot to write that letter and even more to actually post it and send it out into the world.  I nervously awaited to see the response it would get and found myself incredibly amazed.  We have had such an incredible sense of support emerge that not only has my faith in the human race been restored, but my heart feels so overwhelmingly weighted by the sense of love I've felt.

Wednesday I cried and cried. and cried.  I cried due to the fear of the unknown, I cried because I felt like a failure, I cried because I felt helpless and I cried because I felt like if I couldn't fix this... I might lose my husband and this whole fight that we've been hardly persisting through at times this last year, I felt like it might have been for nothing.  Now, I'm tearing up because I never... never in a million years expected the kind of response we've received.

Not only did people share our story and not only did complete random strangers donate to us just out of the kindness of their hearts, but an entire community has come together, for me and my husband.  My hometown of Corning California, a place I haven't lived in over six years and a place I haven't even visited since Tom was diagnosed in July of last year... but still a place I grew up in and call home, they've absolutely humbled me to my core.  One of my childhood friends and my very first Starbucks mentor and later photographer of my wedding began the ground work of a fundraiser which was an idea early Thursday evening.

By mid morning Friday, my childhood friend had secured more donations than I could even count.  By that evening a website was built by one of Tom's old Chico work colleagues: www.helptomandlaura.com and it has all the information to do with the fundraiser thus far and the links to donate to us. We have had an incredible amount of support come in donation wise, from people we know, friends of people we know, and then complete strangers.

This weekend I had planned (a month ago) a trip to take Tom to San Luis Obispo to visit his brothers and to have some genuine fun before he has to go into the hospital for a long period of time and then be stuck at home for months and unable to travel for quite awhile.  I was so excited about this trip and as it neared, so was he.  When we got the awful news about our financial situation and then the stonewall of lack of organizational support, we informed his brothers we'd have to cancel the trip due to lack of funds.  His brothers then came together and they paid for our visit.  I can truly say I have not seen Tom enjoy himself so much as he did this last weekend... at least not in the last 8 or 9 months.  I can't think of anything better and I am so incredibly happy that they made it happen for us.

Not only was it amazing for him, but while down there I kept receiving emails of donation alerts or emails of just incredibly supportive notes from people and it was seriously so ridiculously wonderful that I can't even describe it.  I have tears streaming down my face of complete and utter joy in reflecting on this. To top all of this off, I got an email today from the local Leukemia and Lymphoma Society's Light the Night walk Campaign Manager... asking if Tom would accept the position of "honorable hero" for this year's campaign!

So yah, WOW. So blessed, so incredibly blessed.  This weekend with the trip and with the incredible communal support combined, is precisely what was needed for the both of us before going into this next chapter... the transplant.  So, this week we pack, pack, pack for our move that happens Saturday.  Next week Tom goes in for the pre-transplant chemo at some point.  I believe I was told either the 12th or 15th, but when I asked last week it still wasn't decided.  Tomorrow he has a bone marrow biopsy, so hopefully we find out then.

If you have in any way been one of our saving graces, thank you.

Please Help

Our Story

I’m writing this in a moment of complete desperation and also with hope that things will come together. A week after celebrating our 1 year anniversary, my husband was diagnosed with acute lymphoblastic leukemia (ALL) at just 25 years old. He had just finished a six month training program for his company and had worked only five days in his new official position.

Tom had been feeling really tired, dizzy, weak, and not himself. He had been travelling for work, working on his final presentation, we had been house hunting to buy our first home, and there was so much going on that we just thought it was normal. After a few weeks of this continuing, I made him go to the doctor who told us while it was unusual side effects for mono perhaps that was it. He took some blood work just in case and wrote Tom off of work for a couple of days. Two days later, Tom received a phone call from the doctor instructing him to get to the emergency room straight away as his blood levels were beyond frightening.

I was on my way to orientation for a new job when Tom called me and said he needed to go to the hospital. After five minutes of trying to figure out if this was a joke, I turned around. Within two days we had the confirmation that he had Leukemia, July 25th 2012. Our entire world that seemed to finally be going somewhere with careers and a house… came to the biggest halt, word’s fail me to describe that moment. The worst feeling to come, when I had to call his parents to confirm the suspected horrible news. Little did we know what was ahead of us.

In short, the beginning looked promising. The oncologist we were assigned felt highly confident in treating Tom, said he might be back at work, cancer free in February. What actually occurred was that he couldn’t get Tom into remission. Poor Tom did five rounds of very intense chemo, that also brought along various life threatening infections such as e. coli in the blood stream, chemical meningitis, VRE, and various neutropenic fevers. November 5th, we received the news that Tom was still not in remission (when it was expected that the first round would achieve this and he’d done five). It felt like we would never get there. November 7th we were sent a different hospital where we met Dr. Carroll to talk about a bone marrow transplant, which can only be done once remission has been achieved.

Dr. Carroll achieved remission with a different chemo regimen the first time around. This was the best feeling ever. I’ll spare all of the in between details, but we’re happy to announce that after a few months, they found a bone marrow match for a donor and the date has been made for March 22nd. The hospital has asked us to move closer, which we are doing for ease and Tom’s safety after the transplant. Here’s the kicker. 

Because Tom had only begun his job in January (after graduating top in his class at CSU, Chico for the business college), he has now officially exhausted his state disability funds. This was our main source of income, as I’ve been actually on a leave of absence for carpel tunnel so my worker’s comp checks (which were merely a fraction of Tom’s) are gone very soon. In order for Tom to receive a transplant, he must have a 24/7 primary caregiver as well as backup caregivers just in case. This means I cannot go back to work until he is stable enough to be on his own and we don’t know when that will be. It could be a couple of months, could be six months, and if (God forbid) things just really don’t pan out well it could be a year, etc. 

We do not qualify for cash aid through the state and not being eligible to work immediately he does not qualify for unemployment. Due to only working six months after just graduating from college, he doesn’t qualify for social security disability, and due to being a permanent resident (not a citizen) he also isn’t allowed to draw on social security supplemental income. We have virtually exhausted our options. Seemingly we’ve found the only niche that no agency/organization can help. We do qualify for food stamps, but we need help to pay rent, gas to the hospital, electricity, etc.

This is really long and I do apologize about that, but we’re in need of some sincere help. At 24 and now 26, we have no savings, no retirement to pull from, we have no house to sell, nothing. It pains me to have to be at this point when only less than a year ago we were on top of the world, but we’re asking for the help of family, friends, strangers, anyone and everyone. If you could please help us out and pass this on, that would mean the world to us. Thank you, thank you, thank you… for helping to save my husband’s life.

To donate simply visit www.paypal.com
-choose transfer, click on “send someone money”
-it will bring you to a page where you enter your email address and then mine: laurawalshaw@gmail.com and enter your donation amount. Should be easy. Thank you, thank you, thank you!!!!

If you are interested in all of the details of our journey thus far or would like to follow Tom’s story through his bone marrow transplant, you can follow us at http://leukemialog.blogspot.com/

My Stunning Husband the Day of Our Wedding July 16, 2011

Enjoying a Huddersfield Giants Rugby Game during our Honeymoon Summer 2011

During his second "induction" round of chemo... a 3 week hospital stay at Sutter General Nov 2012

 Visiting our friends the Kirby's after five months of Tom doing chemo Dec 2012 (we would soon find out he was finally in remission!!!)

Transplant Date!

So, we've got it!!!! March 22nd!!!  The hospital was trying to urge (which I suppose is probably hard to do via a 3rd party... especially being that the harassment is probably why it goes through a third party) for the 15th as transplant day, but that was put forth after the original three dates... of which the 22nd was the earliest.  So I think it's fair to say this donor is pretty on it, just probably wasn't ready to go have a trifusion lumen inserted into his neck in the next week or so. In any case, very excited to sort of be approaching the end of this rather nerve racking journey.  Tom isn't very excited about going in for such a possibly long stay, but then who would?

Moving! That's something we're sort of being pushed into doing.  On the one hand nothing sounds any more dreadful than having to find a place, pack, move, unpack, do the hospital thing and all that jazz... nothing.  Then on the other hand, while it certainly isn't ridiculously closer to the hospital, it is a bit and even if it isn't... at least there's more than one way home than the awful one traffic filled route we currently do... and would have to do every day.  So, fresh start.  Sort of suiting ... new bone marrow, new home, new year... yeah.

At first we were so resistant as we like where we are.  We don't necessarily have a ton of people around us, but we've made a few very nice relationships... but I'm sure we'll keep them up.  We like not having to pack (maybe that's sort of the big one?), not to mention the costs involved in moving!!!! We also had started looking around Sacramento and had a few problems:

• The area around the hospital was either way out of our budget or anti-animals
• Sacramento seems to be mostly full of places you wouldn't want to live, with a few decent places... but unfortunately we aren't the only people who would like to not get robbed or killed, so they cost a lot.
• We don't even really know where these "nice" areas are... every time we thought a place looked "nice" online, we'd go check it out and see that yes, that particular complex was nice, but meth was being sold on the opposite side of the fence... dramatized a bit, but for purpose of a good mental picture.
• We live in a 2bdrm apartment that has 1200 Sq ft!!!! We have not yet found an equivalent and have furniture to furnish the house we thought we'd be hypothetically buying... so now we might have to downsize on our collection of stuff? 
• Lastly, it just felt like we were too lacking in knowledge, funds, contacts and time.  I mean we were talking a few weeks possibly to transplant and it felt overwhelming

Well, the transplant coordinator told us to check a certain area (where she actually moved when she came to California) and it was like a piece of placer county hidden in Sacramento.  Looks like a beautiful community!  The places weren't half price of what we're paying now, but some of them were actually a bit nicer! At the end of the day, I suppose it'd be ideal to find a place in a nice neighborhood of Sacramento that's updated, safe, maybe $400 cheaper than here so life isn't a struggle down the road when disability disappears, a place that is ready to move in now so we can do it at a decent pace and be done before he goes into the hospital... yes, but unfortunately my dream world is exactly that, not real.  So, finding a place that's most of those things and maybe even the same price, but we're saving on gas... winning! So we're trying for that. We have one tiny possibility of my dream world... but we're waiting on some verification on their part.

Oh and on the dog front, we got a letter from the doctor so she is now a "companion dog" which means she breaks all the barriers that once kept us from many properties as they can't utilize any kind of restriction! So stoked on that!!!!  God is good!

So that's where we stand.  So excited to have the transplant date in sight now! Fantastic!!!  I know Tom can do this, he always exceeds their expectations and gets out much sooner than they forecast because he can set his mind on something like nobody's business!  I know he will do great with this and he deserves to just be normal again.  

The Final Countdown

So here we are, finally with the transplant nearing!!!  There were moments where I felt we'd never get there and moments where I feared they might not find anyone, but here we are!!  Originally we were told dates that are mostly at the end of March, but yesterday we were told that Dr. Carroll is pushing to move the date up for fear of Tom's fragile remission status. So, we've begun all of the testing/screening he must complete and we could possibly be going in the first week of March!  It all depends on the donor, but it's mind boggling how quickly this ball began rolling once it did.

I keep hoping and praying that his works.  My largest fear is that something doesn't go right or that everything does, but he relapses down the road.  It's one of those things that you start thinking about and then you sort of mentally scold yourself for fear that thinking it might generate it's actual happening. In any case, hoping and praying.

I do fully look forward to the possibility of us getting our lives back and continuing on.  They made it rather clear to us though that it takes awhile and coming home from the hospital won't be an easy/fast transition back into life previously.  I'll continue to hope it is though.

Other perils:  Our first oncologist had projected Tom to be done with treatment and back to work for February, so all of our original paperwork states this and thus, state disability sent us a letter saying that means we won't be getting paid.  Of course it's an easy fix, our current doctor just needs to fill out the form stating he is still "disabled" and unable to work, but I have a feeling they may take awhile to pay us... so thankfully we've already done our taxes because we may have no income this month.  Fantastic.

In any case, that runs out in August anyway, at which point we must hope Tom is okay to at least stay home alone because I'll have to go out and win the bread. Yippee!  Well, anyhow. Super excited that we're on the right track and in the near future my husband's life will be restored!!! :) Let's go 2013!!!