Today Was SOOO Not My Day

I spent the few days in the hospital with Tom with a bit of an upset stomach.  Nothing to be too alarmed about as I'm definitely not known for an iron stomach (though I thoroughly enjoy putting a lot into it, it certainly doesn't play ball).  Nonetheless, last night I was feeling particularly crappy.  Came home with the in-laws after their hospital visit with Tom so that I could have a shower.  I drove back and had my first good night's sleep there (the past nights were full of discomfort and temperature issues).

I woke up this morning and I felt totally fine. A diet of just a bagel and bean burrito the day before probably weren't enough to make the old GI track riot.  I braved some cafeteria biscuits and gravy as well as their slightly brown water... I mean coffee.  I still felt totally fine, until about the end of my coffee, where I got that, "You should only be putting water in me, bitch" kind of reaction from the gut.  I ignored it.. as you do, threw the remaining "coffee" away as we headed out the door to come home!  Perhaps it was the excitement on the mind that led me astray from thinking about my stomach.

Got home, had a mini-breakdown.  The realization I suppose that life sort of sucks? That no one is here to take care of us? I don't know.  I was upset at everything I looked at.  My stomach was hating me and I had a refrigerator full of "sugar-free" yogurts (aka aspartame cups) which I just can't do and "diet juice" (aka the same thing but in liquid form).  It's really not a big deal, I'm just relaying what was going on in my head at the time.  I have wonderful in-laws who did some shopping while we were in the hospital, but I felt like the world was coming to an end because my fridge was stocked with food that I wouldn't eat. First world problems, eh?
I was thinking about how they'd gone down to Salinas and were visiting with Tom's brothers and our niece, and my family have also gone down to Santa Cruz to celebrate Christmas at my Grandma's (something we haven't done since I was a child)... and it wasn't really about the yogurts or yucky jello's and juice... I felt deserted. I felt like if it weren't for Tom being in the position he is, we could be right along side everyone. Worse yet, Tom had asked when I think we'll have our lives "back to normal" and it pained me to hear him ask that because I'd been wondering the same today.  I mean (and pardon the next segment of words), but holy shit, five months ago we were planning to be in our own house right now and trying for children!  I'm so fucking mad at the world right now. I'm so upset!

I feel like we've been so robbed and when this is "over" it won't really be over. We have such a long way to go for that and we will be so debt ridden that we're planning on going back to England so we can stay with his mom and save up some money and I'm just so damn mad that it's come to this. We were finally done with college, starting decent jobs, home searching and the whole thing is such a mess and those things we were doing five months ago are so fucking distant now.  I sincerely have no idea when any of them will happen and especially having children since that will now be so much more complicated when Tom's sperm will be in a freezer here and we'll be in another country and he's barren. I am in complete tears and agony as I'm writing this.
This is exactly what I was referencing in my last post... about my melt downs.  I didn't think this point of the year would ever come.  In July it felt like 2012 was probably never going to end. Time had a new definition: stagnant. And then yesterday I realized how close we are to Christmas, which of course made me think, "It's almost New Year's" which is what made me think about when Tom said we'd "start trying" for children at New Year's time.  I've put on 20 lbs since Tom was diagnosed, ridiculous.  Between not working, not doing anything, stressing out, and not having the ability to not stuff my face to make me feel better... it's hopeless.

Anyway, I digress.  My shitty day.  So I came home... had a melt down over stupid things that are ridiculous and realized it had nothing to do with what I thought I was having a melt down over... which then upon realization of what I was really freaking out over, I only freaked out more.  Seriously, I'm pitiful.  Anyway, I went to the store to fetch some yogurt, amongst other things we needed (like something for dinner, aka soup and french bread) and packed it all into Tom's GTO which was still stuffed with the hospital stuff. Got home, started unpacking (after secretly eating the slice of disgusting cheesecake that I'd bought) and went to get the groceries out of the car.
Well, The milk had tipped upside down and leaked onto his floor (hooray) so I carried a few bags and the milk in, got some cleaner and paper towels to go back out and tackle that, grabbed a couple more grocery bags, spotted Izzy sneaking out the door, dropped a grocery bag and BAM!!!! Pasta sauce all over the damn ground.  Not only that, it was only one jar of pasta sauce (thankfully not both), but it was one jar in a bag with the produce I'd purchased. WHY??!?!?!? What did I DO?!?! Well I went back into the house to fetch a clean grocery bag and more cleaning supplies and towels. It now looks like a small animal was murdered next to Tom's car under the carport, but I survived.

Then I come inside to put everything away and just grow overwhelmingly annoyed with the amount of things we have that have never been consumed and never will be (ie. an entire case of costco weightloss shakes bought for Tom during his first round of chemo in Jul/Aug in case he didn't want to eat... none were ever consumed), through all of those away, along with some powerades bought at the same time that he won't drink (nor I), etc.  Well I wasn't thinking (obviously as I was on a rampage) and I threw them all into the trash can and it weighed it down so much that it couldn't be removed.  I tried the tactic of another trashbag over the top and flipping it... even doubled that one up.  Solicited Tom's help, to which he told me to take the entire container out... and I did.  I saw the mailman was out and we're expecting a package today, but Helen and David have the mail key on the car key set for the honda that they've taken to Salinas.  I said, "I'm going to go ask him if he'll open the mail for me!"  Which of course he asked for ID which I didn't have and it doesn't have my current address anyway... and then I came back in and flopped on the bed and told him of all of my failures today.

I'll spare all of the other in between details, but eventually I made "dinner", to which my stomach responded to by making the loudest noise it's ever made my entire life.  Since then, I've been incredibly sick to my stomach.  I was wrong... must have been the eye of the storm when I felt good this morning... I'm rather ill. Which means that I'll be on the couch so not to infect my chemo-patient husband.

This. This is what it's come to. I've either got to get me a better coping mechanism or some serious pills. I'm absolutely freaking out. On the bright side, there isn't much that could make tomorrow a whole lot worse.  So long as we don't have to make any trips to the hospital.  Silver lining... right?  Merry blippin' Christmas.

Either I Think too Lowly of Myself OR I've Got Them Well Fooled

The title of this one sort of says it all. This has been a rocky ride. There are moments where I seek solace and find myself just on my own crying or in a complete state of nothing (literally thoughtless and nearly emotionless... just sat there).  I get things done because I have to and because I love my husband, not because I'm superwoman.  Sometimes I get so overwhelmed I just shut down or worse I break down... But these are nearly always in private.

That said, Monday both Toms mom and the oncology social worker were telling me what a great person I am and the social worker said she uses me as an example to others because I was in cooking and whatnot in the bone marrow transplant unit.  Truth is, I laugh and smile when I'm uncomfortable or uneasy about something to keep me from crying. I know this probably sounds so vain but the point is the opposite. I don't think I deserve the commencement that I've been receiving.

Afterall, through sickness and health right? Though technically that wasn't in our vows I don't think lol. I guess the point is that I don't feel commencement is in order for just doing what's expected of me in such a time, it shouldn't be a "good job" that I've stuck by Tom and whatnot..what's the alternative, really?!? It's not as if I ever could or would say, "Forget this, this is not what I signed up for!!!". This is just simply what I'm meant to be doing, the task at hand if you will.  I'm a Mahutga (maiden name) and we're known for being good at tackling such things head on and letting the world know we're here and mean business.  Have my mother to thank for modeling that one my whole life.

In conclusion, the title says it all. I'm just plugging away at what needs to be done, having my breakdowns on my own time.  Definitely no superwoman, in fact, very human.  Full of faults and just trying my damnest to get one thing right in life and hope it's this.

The Often Forgotten Fragility of Life

Today we were reminded with a terrible tragedy just how incredibly fragile our lives are.  To wake up to the news that can be found on any website at the moment (msn)... my heart is not only weighing a million tons, but broken as well. I don't know that I really can put into words the way I feel about this situation, 20 children's lives taken and seven adults.  The harming of the innocent is never easy, but these babes still had their entire lives ahead of them.  They went to school today to learn and have fun with their friends, possibly not far from Christmas Break with their families. Heart broken. The largest school shooting since a gunman at Virginia Tech killed thirty two. No one deserves this.

This is the second public shooting in less than a week.  Not only that, we've had the movie theater shootings this year as well. This is absolutely horrendous.  As a country whom prides themselves on leading the way for many others, we have some third world country acts that are painting a very different picture of us to the rest of the world.  How can we be off telling other countries how to better themselves, when a classroom of five year old children aren't even safe at school.

There is absolutely no way for me to really articulate my feelings.   I'm trying, but I'm so full of anguish and sorrow for these families, misunderstanding and anger for the gunman, and fear for our future.  The shootings that have taken place this year have claimed so many lives, so many innocent lives.  They've also taken place in settings where you or I would go any day and feel safe.  What do we do?  How do we go forward without living in fear that this might happen to us or our children?  HOW do we tell our children to trust that the world is a safe place?  Do we now need to be teaching our four year old children what to do in such situations?  When I was a child, I just had to say no to strangers offering lollipops in their cars... and that was the scariest thing in the world to me.  I never had to think that something harmful and potentially deadly could happen to me at school.

Here I've been afraid of losing my husband to leukemia and today's events have reminded me how completely unpredictable life is and how the most unforeseeable things can take place in the unlikeliest of places.

Today and this Holiday Season, my heart is going out to all of those struck by tragedy this year.

Finally, A Wanted Answer to My Many Prayers

Today we had our meeting with Dr. Carroll to find out whether last week's marrow biopsy yielded remission or not.  We went in without any expectations, given that the last time we had this kind of consultation we had a very unexpected blow to the ego and spirits.

Before meeting with the doctor, the Financial Coordinator (Raj) came out to go over what Tom's medical benefits cover as far as medications and the transplant are concerned.  During our meeting with her I was listening rather attentively and it didn't particularly cross my mind as to why we were discussing it, but once she left I thought, Wait, I wonder if Tom is in remission and that's why we're talking about coverage for transplantation! Then I shut my thoughts down so as not to over excite myself and then be punched in the gut with bad news.  The time in that room could not possibly go by fast enough.

We had to wait for Tom's labs to come back before Doctor Carroll would see us.  Why is he putting us through so much torture!!!! Tell us already!!!! My mind was racing with thoughts and also aching from lack of sleep last night due to the anxiety attached to this meeting.  Suddenly I was getting very anxious and thinking about ways to stay calm if it was bad news.  This in turn made my stomach sour.  Hunched over with a headache and upset stomach I could only just urge the doctor in with my thoughts.

Finally, he came in and he sat down.  What does this meeeeeeeean?!?!?!  I tried desperately to read his face, his body language, anything.  "So, I hear you're not feeling well?"  OH COME ON!!!!!! Tell us already!!!! Tom tells him he thinks it's one of the meds that he's on, etc.  Cut the chit-chat.  Then he says it... "The biopsy shows that you're in remission."

Come again? "Our pathologist had a thorough look and found nothing suspicious, which is not what your previous biopsy was like.  We got a great sample!"  Now, I had coached myself on what I would respond with for bad news... what do I do? I end up having to fight back tears! Tears of joy of course, but this was way more overwhelming than I'd anticipated!  Out of my mouth comes, "Yay!!!"  Frantically tapping Tom's arm, "Do you hear that?!"  Then I look at the doctor and say, "We weren't thinking positively at all!!! After last time, we didn't want to get too excited."  That sounded awful. He continued to reassure us and talk to Tom about the biopsy and it was just all so damn exciting!

He said he is nervous about this remission however and so we need to maintain it with some more chemo until we have a donor set up.  He hadn't heard any news on Alex's marrow typing test yet, we assured him it was done last week to which he said we should then have the results hopefully this week!  Whether Alex is a match or not though, it can take nearly a month to get things sorted and be ready for transplant, so he still needs to do some maintenance chemo.

Tom's mom arrives from England on Wednesday, so Tom asked if he could go in on Thursday so that he could accompany me to San Francisco to pick up his mom.  I assured the doctor that if this would in any way impact Tom's status of remission, it was not necessary.  Surprisingly, Dr. Carroll came back and said, "Let's do Monday. Spend the weekend with your Mom."  YES!!!!! 

The best part is, this chemo is only for 4-5 days of hospitalization.... so long as Tom doesn't get any kind of fever/secondary infection while in.... He'll be home for Christmas!!!! Miserable, I'm sure, but home nonetheless!  Because he'll be coming home right after the chemo, it means his counts will crash while at home, which leaves him tired and vulnerable to outside infections. He was really wanting to be home for Christmas, but we were afraid that him being home would mean him not being in remission... but we get to have our cake and eat it too on this one! I'm so thrilled!

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To say that on the way to the hospital I was highly considering taking up smoking upon our return home today (in anticipation of really awful news).... I must say that I am feeling especially relieved.  I have also not picked up smoking, instead I've picked up a rather silly grin and large amount of relief. Merry Early Christmas to me!

Trying to Ease the Anxiety of Impending Doom

The social worker suggested that it would be a good idea for us to get out of the house and go somewhere this week. She thought it would serve well as a means to keep Tom's mind off of the pending biopsy results. We chose to visit friends and family in Santa Cruz.

I don't know if it's because Monday is nearing and that I'm bound to be thinking of it, or if it's the fact that I'm here to not think about it that's causing me to think about it; But last night when I went to bed, all I could think about is how horrible I'm going to feel and how earth shattering its going to be if this biopsy doesn't have a negative leukemia read.  So I start thinking about this and reliving the moment of the last biopsy results and my collapse and how horrible it was, and then I think, "My God, Tom's anxiety must be a MILLION times worse!"


Surely being away IS a good idea, visiting with so many folks must at least be keeping our minds off of it to a certain extent, but when left to my own devices, I'm afraid I'm my worst enemy.  A few nights ago I couldn't sleep at all and I found myself praying past the usual amount, hoping it would subdue me into sleep... Instead, I ended up bawling my eyes out, begging God to have mercy on my husband and to let us grow old together healthily. Believe it or not, that actually helped me fall asleep! It was such an awful feeling though. I'm getting so anxious and overwhelmed about these results, perhaps not building up false hope will ease the blow if it's not what we want... I'm not sure.

Our Justified Sense of Denial

When he's at home and feeling good, it's so easy to forget that he has this very serious disease.  Obviously, things are very real and serious when he's hospitalized, but when he's home and feeling good, it really is easy to sometimes forget. Maybe the more correct word is ignore. We've both said it and maybe that's what makes it so easy, is that we both get into this easy going routine of normality, especially when we have a few days off from doctor visits.

I don't know if it's a good thing or a bad thing. I mean, it isn't really denial is it? I know that he has leukemia, I know that he has to get a bone marrow transplant, and I know that he is still susceptible to terrible infections and that he will have some rough patches ahead; BUT when he's home and feeling good, I think it's important that we both get a break from the stressful moments of reality and we both get a chance to feel happy and unburdened temporarily. Yeah, that's my justification.  We shouldn't have to be constantly reminded of what a crap situation this is... Because it isn't all terrible.

For one, we are so lucky that I am able to have this time off and when he's feeling good, God is it wonderful to spend time with my husband. Likewise, when he feels his worst, it's so wonderful that I can be there for him... Even if there isn't much I can do, at least I'm not at work somewhere worrying and feeling completely worthless.


In other news, brother two was finally able to get his typing test done to see if he's a marrow match.  Today Tom is having a bond marrow biopsy to see if he's in remission or not, so fingers and toes crossed.  God we really need this to come back with him in remission, quite seriously.

Anyhow, that's all she wrote.

Happy to be home

Friday Tom was allowed home, just a day off of his predicted "home for Thanksgiving".  So, he shocked the staff, as they'd predicted another week, but truth be told... he isn't feeling to cracking.  We think this chemo has really drained him, then again, being in a hospital for two and a half weeks without being able to do much  isn't going to make him able to jump into regular activity at home.  That aside, its still incredibly nice to just be home and in our own comfort zone. Not to mention our dog is thrilled to have us back!

Construction.  That's what's happening right now.  Our property management is fixing the disintegrating patios on our apartments and currently I can't even hear myself think with them demolishing the outside of my apartment. What's worse, is having a husband who doesn't feel good and at 8am having them outside our bedroom door banging on the wall and shouting at each other... though I, too, would have liked to have remained in bed... without someone able to peer through my blinds. 

On to business, brother 1 wasn't a marrow match, brother 2 is to do his test tomorrow. We haven't heard yet when Tom is supposed to have his marrow biopsy to see whether he is in remission or not.  Just been emailed by the marrow transplant coordinator and they are starting a preliminary search via the registry as well.  So, at least things are starting to move a bit. :)

Side note, the construction outside just hit the wall hard enough to unplug the computer.  Hooray, hopefully this is not what we have to look forward to every day for too long.  Can't even open the blinds, because my dog is not a fan of the action outside.

On a brighter note, literally, we got a Christmas tree! Our first Christmas tree, ever! Tom's been telling me how much he loves Christmas and said he keeps dreaming (which is something he never does, unless drug induced) about being a child and waiting up to sneak a peak of his dad putting the presents under the tree during the night. So cute! Originally, we weren't going to get a tree, because we aren't supposed to have live plants during imuno-compromised times, due to the bacteria they can carry.  But we thought it'd really lift the spirits of everyone and make the holidays as closed to "normal" as possible.

I think it came out looking pretty good.  

The Good and Bad News... Mostly Good.

It's November 23rd, a day after Thanksgiving and I have everything to be thankful for.  Tom was admitted under the understanding that he would probably be in here for three to five weeks!!!! He has been in for only 2 1/2 weeks!!! He seems to constantly defy expectations on length of stay, in a good way. 

My family came down to visit and my mother made a super delicious Thanksgiving meal (as always) and my dad made his fantastic apple pie! We had dinner at our house and then made a plate for Tom and brought the apple pie to visit at the hospital.  He actually ate about half of it, which was amazing compared to his appetite the rest of the week!

So relieved to have him coming home.  One, everything is better at home. Two, it will be nice to be to sleep in my own bed and have our dog to cuddle with. 

Brother number one was deemed not a marrow match.  That was quite the downer, however they reassure us that if brother two is also not a match, the registry should be no problem. Reassurance or not, it was still a super blow to the ego and we were a bit down about it yesterday.

Really thankful for all of the help we've had with Izzy these last couple of weeks so that I could spend my time at the hospital with Tom, instead of driving back and forth.
Best get packing, as we packed for 3-5 weeks and the trips to the car to load up our stuff is about to really suck. BUT if it means he's coming home, I will happily make 20 trips to the car!

Things to be Thankful For

This week is Thanksgiving and while I feel there is one large thing that I feel I should be rather unthankful for... in the spirit of the holiday, I should reflect on the things I am thankful for.

Things I'm thankful for:

• Our incredibly loving and supportive group of family and friends.
• Our parents whom do everything they can to help us out as much as possible.
• My family for coming down and making Thanksgiving dinner for us.
• My incredibly awesome neighbors, who have been taking care of Izzy for us so that I don't have to drive back and forth to let her out.
• Our awesome friends who spent two hours sorting out their son's legos, so that Tom could have the requested black and grey ones.
• A reliable and somewhat gas efficient car to drive the over 1,000 miles that I've driven in just the past two weeks!!!!!!
• My grandmother who sends me surprises in the mail, like books on dog psychology and wonderful Starbucks cards.
• The "girl time" I was able to have last week, a lovely day at the museum!
• The fact that we live in Northern California, which is a wonderful place to be if you're in the position we are... as far as healthcare.  I am so grateful/thankful that science has come so far and that there isn't just one place, but a few that are cutting edge and capable to ensure that my husband is going to make it through this.
• I am thankful that I work (or worked, rather) for Starbucks and because of that, I am enjoying a delicious cup of Thanksgiving blend brewed from the Family Room at the hospital... it's delicious.
• I am also thankful that this company (Starbucks) gave me lots of stock over the years and it's helped us quite a bit: a couple years ago it paid for our wedding, last year it paid for our move, this year it's going to help us through this awful time. Thank you Starbucks!
• I am thankful that this hospital has a "family room" in the bone marrow transplant ward, where we can store and cook food to make it feel more like home... and get out of his hospital room.

I am sure that I could go on and on, but the point is: Even when things seem super awful, there are ten times more things to be thankful for... and that's what we should celebrate.

PS. Originally I was going to write a long complaining blog about my terrible moody self... and then I wrote this and taught myself a little lesson in the works... SO I'm also going to use this as a post on the Leukemia Log... because I think it may be of assistance to other's who feel bitter about Tom's condition during this Holiday Season. Go Forth and BE MERRY (and Thankful)!

Murphy's Law... A blessing or a curse?

Every time that my husband has been through hell and back with some infection or another, it never fails that right as we get over it and he gets sent home- is when someone is due for a visit.  Now, on the one hand, they're here and he's feeling good and can enjoy their company.  On the other hand, they tend to leave when he's just due back in for chemo or whatever and we're back to being alone and him feeling sick and miserable and me running back and forth, etc.  Luckily, my mom is now coming down to stay with us a couple of days a week to make this easier while we're on our own during this several week hospital stay (have I mentioned the hospital is 30 min away?).  SO thankful she's able to do that!

I'm exhausted.  Completely and utterly exhausted.  I don't even have to do much, today I just took my dog out for a walk down some trails for an hour or so and then spent several hours hunting down a lego kit my husband requested.  That's it. Though Tom is done with his chemo, he's feeling rather sick still- particularly when aromatic (warm) food is presented in the room, no bueno.

He's sick and tired of being in the hospital so much, understandably as he's been hospitalized more than he's been home since diagnosed.  I'm sick of him being in the hospital! I feel so terrible for him.  He feels so robbed and cheated and all I can do is really hope... and I mean really hope that this chemo has put him into remission and that we can go ahead with a biopsy and he'll be good forever.  However there's always the daunting thought that it won't turn out that way and the even worse thought that I know he's constantly thinking of that. 

He's currently attempting to eat the dinner they've prepared for him, though he says he's having to literally force everything down... and it's true, because I'm witnessing the physical forcing.  Just wish there was something I could do to make this so much easier for him...

Daylight Savings Time and Bread Thieves

Aren't the days supposed to be getting shorter and shorter? I feel like they are doing the exact opposite.  Especially with it getting dark so early, those last few hours of the day just drag.  This chemo regimen has been particularly rough on my poor hubby... he finds himself easily nauseated and frequently sick... which makes it a lot more difficult to be up and around or doing anything interactively. Nonetheless, I'm here to be supportive and loving and make him feel better (if there is anyway of doing that). 

I thought one way to make things easier, would be to make some foods and take other food items in and store them in the family room so they could be readily available.  That said... I just went in to possibly come up with some sort of plan for a meal... and the brand new loaf of bread that I marked with our names-was gone.  Now, I know it's a loaf of bread... but if you're packing up your stuff to go home, wouldn't you make sure that all of the items you grabbed actually had your name on it? Apparently not and now we're out of a loaf of bread.

Bit of a downer... no big deal that my $4 loaf of bread is no more.  I had also made a batch of chocolate chip cookies and left some for whomever (in the family room), I can only assume that since they were gone.... either A. I make tastier cookies than I thought  or   B. Bread thief stole my cookies too.


Happy Saturday.

General Update on Tom's Health

Last Monday we met with our oncologist to find out if we'd be starting round 5 of chemo on Tuesday.  Unfortunately, Tom's last marrow read came back still showing 5-10% leukemia cells.  They set up a consultation for us with Dr. Carroll at Sutter General in Sacramento.  Dr. Carroll seems to be a guy who knows what he's doing, said that there's no question that Tom needs a marrow transplant, etc. but that we need to first get him into remission, so he needs to try a different and stronger chemo regimen.

We were set up to begin this last Friday.  We showed up with all of our bags in tow, looked like a family of gypsies ready to camp, only to find out that there were some insurance issues and we wouldn't be starting.  The insurance company had come back saying that they did not cover anything to do with the transplant at that specific facility, he could get a transplant... just not at Sutter General.  Didn't seem to make much sense as we'd so far received all of his care through the Sutter system (just a different hospital).  We packed up, upset (to say the very least), confused, scared, angry... you name it... I felt it and I'm sure so did everyone else.

We had actually set up a "second opinion" with UCSF for Friday, but because we were not expecting to be scheduled to begin chemo in Sacramento on Friday and then were, we had to cancel it.  I immediately called them back absolutely begging to get that appointment back.  We told Dr. Carroll that since the insurance wasn't covering the transplant at Sutter, while Sutter worked to obtain authorization, we would seek a second opinion and then begin treatment on Monday at Sutter if they'd obtained authorization from insurance. When the lady at UCSF told me that the appointment for Friday was for a "second opinion" and if we were going to need to actually go to UCSF for this procedure, we would need a proper consultation with the attending physician and it'd have to be Monday... I was in tears begging her to squeeze us in that day.  Eventually I understood where she was coming from and thought one more day wouldn't hurt and agreed to Monday.

UCSF, what a large place.  Though it took a long time, we were seen and put at ease.  The physician there told us that the regimen Tom had been on (Hyper CVAD) was delivered well by Dr. Colbourn (our original oncologist), he also said he puts his seal of approval on the regimen that Dr. Carroll had proposed.  Told us there was absolutely no need to do the pre-transplant chemo at UCSF as
1. there are no beds available in the timely fashion Tom would need and
2. As a transplant facility, it'd seem that Sutter General is more than capable of delivering this chemo.

He did say that if this chemo doesn't get him into remission, consider it two strikes and come to UCSF.  He also suggested that maybe we should have Sutter General deliver the chemo, but do the transplant portion at UCSF.  We're leaning towards that latter plan (minus the fact that it requires a move to the very expensive, San Francsico).  Though either way, requires a move to be closer to whichever hospital chosen.

Tom is currently on day 4/5 of this chemo regimen.  As it's considered an "induction" phase due to it's level of strength... he will be in for 3-5 weeks while his counts and body recover and they keep watch over him in case of any secondary infections.  In the meantime, his brothers will be typed for a match and if they aren't, they will try to find one on a registry.  As the registry takes time, even if Tom hits full remission (fingers crossed) from this regimen, he will have to continue it to keep things from coming back, until they have a match ready to donate.  The registry can sometimes take 2 months.

Until we decide where he wants to do the transplant, I will be travelling the 30-60 min (depending on traffic) journey to and from the hospital and attempting to pack our house up for whatever move we decide to make. My husband has been so brave during all of this, I can say I married someone worth looking up to.

Queen's Guest House

The sound of heels walking on the wooden floor of the hallway outside, echo in a way that make our guestroom sound as if it were empty.  I roll over, but the sun comes in from the window, reminding me that it's morning.  There's a desk against the window, with an electric kettle, various teas, instant coffee packs, sugars, and creamers.  Being a Starbucks barista, I instead grab some VIA out of the suitcase.  A fresh cup of Colombia will do.

Wish we could have done more in Edinburgh; Though, I had a good walk around Princes street, we checked out the park, the church, got some postcards, and did some window shopping. Oh, and how can I forget, the most amazing pizza I have ever had?! A margherita pizza at La Rusticana.  On our way out of Edinburgh, we managed a drive down the Royal Mile and caught a peep of the setting up of Princess Zara's wedding.  

Afraid Tom may have food poisoning, it's amazing that we made it up to Edinburgh from Newcastle, but we didn't want to lose the money we'd put toward the reservation.  This place is very nice, I wish we had a bathroom so lovely in our place.  Perhaps the best bit is the basket next to the kettle, full of delicious Walker's Shortbread cookies!  Well, if not that, it must be the tons of humbugs I can't stop eating.  Edinburgh is absolutely lovely, really hope we can visit again someday. 


This is the memory that came to mind tonight; as I sipped on my accidentally made caramel brulee (dessert of choice on our honeymoon) latte, and ate some Walker's Shortbread Cookies that I purchased at Starbucks. What I'd give to go back to that trip (aside from Tom not feeling well that trip, of course)...

Emotional Ranting?

Last week my husband had a variety of tests run because of him going sepsis.  One of the tests had nothing to do with that though, his bone marrow biopsy was scheduled to check the status of his cancer.  In late September Tom had an aspiration (where they just take a sample of marrow, as opposed to a biopsy that's marrow and a piece of bone), it came back with a read of 10-15% residual leukemia cells down from 90%.
Ordinarily, someone would say Great News! but this is actually rather not good news, as after the first two rounds of chemo (what the called the induction phase), they expected this read to say 0 and him be in full remission.

Nonetheless, they said that while it doesn't happen very often, it can happen.  Tom's a really big guy and when they calculate the amount of chemo to give him, they can't actually give him that amount.  In fact, they don't even give him the full amount that they technically can because he's been so wiped out before on less than that, with the e. coli infection in the blood stream.  Anyway, so because it can yield such results and not have too many red flags, they thought they'd give him another two rounds assuming it might just take a little extra.  He did the two additional rounds and it would only make sense that if the first two took it from 90-10%, that another two rounds could wipe out that last 10-15%, right?

Our oncologist returned from vacation on Monday and we went in to get the results and see what was happening because this VRE infection he got last week was likely to put off his scheduled chemotherapy round 5 for Tuesday.  As it turns out, there is still a read of 5-10% leukemia cells in the marrow.  A decline, yes, but certainly no victory.  He should absolutely be in remission by now from the chemo.  It's not doing what it needs to and at a certain point it begins to harm the marrow.  The oncologist said that with such a results and the chemo not being able to achieve remission (because at this point the chemo should only be acting as an agent to keep it at bay, not still be battling it into remission), that if we took just the chemotherapy route, chance of leukemia returning is much higher!

This means that he has to get a bone marrow transplant.  It has to happen quickly as we don't want the leukemia to start spreading again.  He's scheduled to start an extremely intense pre-transplant chemo on Monday.  We have a consultation with the doctor who will do the transplant, today.  We were really hoping to get in with UCSF for a second opinion, but as we only had five days to do it and our oncologist's medical assistant didn't send off his records until late yesterday, I doubt it will happen, but we're crossing our fingers.

I'm feeling a lot better now, but Monday was beyond tough.  My husband told me that if this was the verdict on the marrow, that it would be the end of him.  All through this journey we've been told, "You're young! You're healthy! You're active! We caught it really early! ... All of the odds are on your side because of these things, this will be easy, textbook, cookie cutter perfect...." And yet, here we are.  So when the oncologist told us that with the bone marrow transplant that The odds are on his side and that someone like you who's active will bounce back much faster it's almost hard to jump on the positive train along with him.  When we got to the stairs to leave, I absolutely fell apart.  I had been saying repeatedly for two weeks that Of COURSE the marrow would come back clear, Thomas don't be so stupid! How could it NOT tackle that last 10-15%?!?!?! I felt like SUCH a jackass!

Anyway, I guess we'll know more today after talking to the guy who's done so many of these.  From what the oncologist explained to us, it seems that my daunting ideas of bone marrow transplants isn't really the case these days.  Just felt like I should share an update on how terrible things seem to be going.  On the bright side, going to do this now, means that he will be sort of out of the clear from the marrow transplant around the same time that he would have finished the consolidation phase of chemo... and with the transplant there is no maintenance chemo, saving 18 months on treatment time.  So hopefully for once everything does go according to plan and he does well and we can get back to our lives sooner than expected.

Over and Out.

Definitely not a 5* hotel

Though it often slips out of my mouth, Tom's hotel room, it certainly is far from that.  After four nights of sleeping on this "couch" I can say I have the headache and backache to show for it.  Tom has an actual "bed" but he too has a rather intense backache.  What makes this couch even more unpleasant, is the lack of cushion in it which results in a numb buttocks when sitting on it. 

If lounging apparatuses aren't enough to make it somewhat miserable, one feels like they are going through menopause sitting in here.  It seriously goes from 85*F one moment down to 60*F the next. 
While there is somewhat of a base "room service", the fun-sized soft drinks that the nurses supply us with are definitely more of a highlight than the fine-dining cuisine they serve Tom as meals.

It's no wonder that as soon as he's feeling better, Tom begins to press the nurses for any sort intel as to when he will be released (now we're talking from hotel to prison analogies).  At this point in his treatment, everyone knows my husband very well as he's what they refer to as a "walker and talker".  This simply refers to his mobility and sense of wit about him, whereas many of the patients on the ward are rather bedwritten and not so functional.  Anyway, now that many of the nurses have made the mistake of guesstimating for Tom as to when he may go home, no one will answer the question for him now... as they all know he will hold them to it.

There are "recreational activities" provided, in the form of support groups.  I actually attended the Friends and Family group last night.  The group was entertaining, definitely interesting to see how differently people have been affected by cancer.  For example, one lady was in there because her brother in law has been diagnosed with a recurrent prostate cancer and given 9 months to live... his wife (her sister) has asked that she be there when they tell their three children (ages 12 and twins at 10), so this woman came to the group to find out how one should break this kind of news to children.  That was a bit of a downer.  Another woman has been caretaking for her husband for seven years of four different cancers!  Mindblowing.  And of course there was the girl I've mentioned before, who's mother is in her 80's and has the same type of leukemia as Tom, but the treatement being so rough... has been told she is too old for treatment and has drawn up a Do Not Resuscitate order.

While the group was interesting and a good moment of connection for me, it was the hour and a half afterward that I 100% just had intent to quickly ask the social worker to stop by and check in on my husband in the morning and instead ended up going into (as mentioned) an hour and a half of me telling her all of the things that have been going on and have us so incredibly overwhelmed, to say the least.


In other news, Tom's mom arrives from England today, which is also contributing to his dying itch to get the heck out of here.  We have the Leukemia and Lymphoma Society Light the Night Walk on Saturday and I know he definitely wants to be out and able to partake in that. 

For now, I sit on the stone thats numbed my bum and ponder what to do about lunch. The house is beyond clean and ready for our guests, I have a book I could possibly read if it came down to it, and our self-made mini bar has run dry of goods... I suppose some grocery shopping is in order.

Compromised Immune Systems

I mentioned before, the unexpected hospital stays and the stress that goes along with that.  When on chemo, or at least on the hyper cvad regimen, one is sent home with normal counts with the expectation that during the homestay the immune system will completely crash.  Along with that goes all of the counts, platelets and hemoglobin included.

The worst part is, you can lysol your house until there isn't a single 1/8 inch left untouched by sanitzer... you can stick the person in a bubble, have zero visitors, follow the neutropenic diet to a T and as it turns out, the person is a threat to themselves. 

September 2nd my husband was admitted into the hospital, spent time in the ICU, had brain scans, abdomen scans... you name it-they did it.  He had e.coli... and not from something he ate, but the e. coli that is normally in a human person's body.  It got into his blood stream with his counts being low, etc. and once it was in there, he didn't have immunity to fight it off.  It was one of the most frightful times in my entire life as we waited for those blood cultures to grow and tell us why six bags of blood couldn't raise his hemoglobin levels and why the antibiotics weren't working to reduce his fever... it was terrifying.

This past Saturday his fever spiked again.  Home again after having his "even cycle" chemo (which is what he had before his previous e.coli infection), he began with stomach pain and a slowly creeping fever.  We waited for it to hit 100F and we called the oncologist and were sent to the ER, for about 6pm.  By midnight he was up to 103.9F, they had him on ice packs, antibiotics, tylenol to help with the fever... it wasn't working.  He was low on blood and platelets (coming in with a 0.1 white blood cell count, 7.4 hemoglobin and 13 for platelets), but they couldn't give him any due risk of a reaction, until his fever was less than 100F.  After a long night of contemplating an ICU stay, the nurses on the phone with the doctor, lots of blood draws, fluids, and meds... at 6am his fever made it into the 99 range and they got him the blood and platelets.  

Yesterday, his fever stayed at a low grade fever in the 99 range and with a couple more bags of blood and more antibiotics, this morning he registered in the normal 98F range.  He has remained stable all day.  Cultures came back and showed a gram-positive bacterial infection... which could be e.coli again.  The nurse said that more often than not, these secondary infections are caused by some bacterial/fungal agent that is normally present within or on the body, but with compromised immune systems they aren't kept at bay and over run the body.  Fantastic. 

Here we are, wondering what it is this time, hoping that it could give us some sort of insight as to how we could avoid this situation next time... and they tell us that the patient's own body is usually the culprit to their secondary infections. And here I was blaming myself and wondering if I prepared food incorrectly. 

In any case, I'm very relieved to see my husband is doing better.  This only makes me look forward to the "even" round next time, not.

Currently he's down having his bone marrow biopsy to check for possible residual leukemia.  Crossing all of my fingers and toes that it comes back clear, we need a win.  Good news, hoping for good news.

Jumping Through Hoops Like a Circus Poodle

I think the general public might agree that the last thing anyone needs to have to do when caring for a loved one with cancer (or any life altering situation) is to have to have their insurance company on speed dial to argue with each day about some claim or another.

I just got off of what seemed to be an absolutely endless phone call with our insurance company.  I say, "if our deductible has been met and our maximum out of pocket is $3,000... why am I holding an already processed bill for $4,600?"  ... He says, "You should call the hospital"  the hospital says to call the insurance, the insurance says it's the hospital's fault because they must not be billing correctly, etc.  Then he tells me that they (the insurance company) don't keep track of the bills and amount owed.  I respond with, "then how would you know when to start covering at 100%?"  Is this really happening?  How can this be an actual dialogue of any sort of productivity?  It took absolutely my entire being to remain calm, civil, and collected.

The man kept telling me that he needed specific claim numbers/dates of service... I said, "I have three months worth, do you have all day?"  He told me I should double check them as they don't keep track and I responded, "So you want me to go through myself, add up everything I've been charged until I hit the deductible and total out of pocket and then call you with the other fifty pages worth to discuss why it's not covered?"  In retrospect, that must have been the point where I lost my cool.

In the end, I decided I would go with his suggestion and pulled out the explanations of benefits and when I gave him specific dates and whatnot, his response was "these are all in reprocessing, ma'am."  Are you kidding me?????? Maybe it's just me, but if they did right by the customer and processed everything correctly the first time... they could save a lot of people a lot of unnecessary stress.  In the last minute of our conversation the human emerged and he told me he understands what I'm going through, as his mother also battled cancer and that if I need anything I shouldn't hesitate to call them for another song and dance. Fantastic. 

On a slight side note, within these "reprocessing" claims is one for a drug called Rituxan which costs just over $14,000 each time and Tom has has now had six of these!  We were not informed until he was going in for his fourth one, that our insurance had only just (a month and a half later) got around to denying coverage for the first dose he received of the drug.  Which meant we'd already incurred $56,000 worth of "patient responsibility".  Our oncologist had done some extra screening drugs to make certain that Tom was a patient who would benefit from the use of this drug before giving it to him as he said this often occurs with patients receiving this drug.
Crossing our fingers that the "reprocessing" and the appeal letter sent in from our oncologist's office does the trick and gets them to cover it... otherwise, future bankruptcy here we come!!!!

Fairly certain I will have gray hair by the end of all of this.

Normality at Barnes & Noble

Last night, for the first time in nearly three months, I made a venture out to somewhere where I knew no one and was there for no particular purpose and had no rush to get back. I chose to go to Barnes & Noble.  Granted, while I was there I was looking for a recommended Cancer Cookbook, but for the most part I was just there with nothing particularly on my mind and no one to have to talk to about my husband's condition.

I got a coffee and I even went as far as to have a most enjoyable piece of pumpkin cheesecake while I sat in the bookstore cafe.  It felt so good, so incredibly liberating to do something that I used to watch so many people do as a barista, I was just there shopping around, entertaining the idea of reading various books... sort of pretending to be something I'm not, but it was amazing.

I've always fancied myself a reader.  I've also thought it'd be nice to be wonderful domesticated housewife who has wonderfully planned out delicious meals, a ridiculously clean house, and a cute apron to wear while baking my latest creation.  None of the above really suit me.
To be honest, there are few books I've read front to back, I've joined online "book clubs" and bought books that I never read, I have taken many trips to various bookstores and peruse the shelves as if with purpose and usually again, buy something I won't read or don't buy anything at all.  I absolutely love the romantic idea of cozying up on a couch with a cup of cocoa and a good novel, but when given the chance... I'd rather have a nap.
As far as being some sort of domestic goddess, I get upset when I clean so much and really have nothing to show for it when it gets dirty so quickly; If I put the dishes away more than three consecutive times I feel a sense of abandonment and lack of support.  I love throwing clothes into the laundry, but I absolutely hate folding them and my number one blood boiler being that my efforts go unnoticed when my hard labors stay in the basket they're delivered in and just get rummaged/unfolded instead of put away.  I love to cook, however with my husband's constant change of taste and whatnot, I seem to find that he asks me what's for dinner and then 99% of the time follows with what he'd rather have for dinner... and yet, when asked what he'd like three hours prior, his answer is always that he's "not fussed".

All of that to say, that I certainly do not fit the bill for the things I would like to envision in myself. Now, if I were to sort of capture what I am as opposed to what I'd like to be... I think it would end up being something of a mess: An anal retentive, tightly wound, emotional basket case of an overly organized and obsessive compulsive nutter. No one wants that do they?  But last night, last night I was given the opportunity to pretend for two hours  that I was everything that I am so ridiculously far from.  I was a cafe going, cook book buying, novelist reading consumer.

When I left Barnes & Noble, I truly thought, "Boy I've got to do this more often!"  I felt so unstressed, so unwound, treated and absolutely delighted. Then I came home and enjoyed the KFC that I stopped to pick up (as my husband preferred that over the lamb I had planned to make) and watched a few shows with my hubby and brother in law... the night was great.  Until I went to bed.

In bed my husband simply asked me for a back scratch... a back scratch.  Something so simple, but the fact that it was to make him "feel better" which must have suddenly reminded me of everything, I completely and 110% fell apart.  I was in hysterics and my husband was there to calm me and I just couldn't stop crying.  I told him how I felt at Barnes & Noble and how it'd been SO long since I'd felt the feeling of normality and how completely and utterly stressful it is to just deal with day to day things anymore.

It was a rather weak moment as I cried and complained about how overwhelmed I get, especially when he's having moments of pain or sickness and I have to sit bedside in the hospital and watch him in complete agony with there being absolutely nothing I can do to help.  The worst being that sometimes I feel so alone, because I have to be the strong one (not the ridiculously sobbing one) for him and when it comes to updating friends and family no one is going to want to hear how it really is....What it all boiled down to was how this moment in Barnes & Noble reminded me of what was and what some day will be again, and how I just absolutely cannot wait for our lives to be normal again.  That said, this week marks the half way point of his chemo... HOORAY!!! So now, just to cross our fingers that next week's marrow test comes back 100% in the clear of leukemia so that we can keep on with the chemo and not have to do a bone marrow transplant.

Also to note in the moment of weakness, I realized how amazing my husband is as he held me and comforted me while I calmed down and got it all off of my chest and returned to the usual.  I think that was a long time coming, felt much better this morning.

Unexpected Hospital Re-Entries

There are a lot of things that one expect to happen when a loved one is going through chemo:

1. Bad news (such as the diagnosis for example)
2. Chemo to be rough (involve vomiting, irritability, etc.)
3. Hospital stays for treatment

Then there are things that one doesn't really see coming, such as surprise trips to the hospital for secondary infections.  On September 2nd (the day after my birthday) my husband spiked a fever of 103.4 and needless to say we went to the hospital and after multiple bags of blood and counts not responding, a short (but very scary stay in the ICU), a brain scan for possible aneurysm, and days of immense pain so painful that looking at him made the onlooker want to cry, they found out he had E. Coli.  After twenty four hours of being on specific antibiotics for e. coli, he was like a caterpillar who'd just become a butterfly... turned over a whole new leaf and you'd never believe that he was the same person who went to sleep in that bed the night before.
It was one of the most scary moments of my life, might have even topped his moment of diagnosis.

That said, he was released from the hospital on Saturday (10/13) and we didn't even make it home and I had to pull over and let him be sick for quite an extended period of time.  He soon had a rather intense headache (he said 9 on a 10 scale).  He wasn't able to keep anything down, so morning medications were gone.... our oncologist called and had us direct admitted.  When we got there and saw our oncologist, he told us that because the chemo he'd just had targets the brain, he could possibly have a chemical meningitis... but that it wasn't possible to prove.  If it was chemical meningitis, he said simple steroids would do the trick. By early evening yesterday, Tom was able to hold down dinner and was able to get sleep overnight.  Let us hope that it did the trick.

Our oncologist told us with his particular chemo regimen, with each discharge there is about a 25% chance he will return with some sort of secondary infection.  I suppose that when I'm told that I should be less frightened when it happens, though I don't think that was the case.  In any case, I'm very relieved that we were able to fast track to recovery.

Seeing Myself in a "Newbie"

As mentioned in the first entry, we went to a couple of groups this past week.  One of these groups was just an oncology nutrition group, the other was a support group for family and friends (though at first just Tom and I showed up for something to do, then he was forced to leave as someone of legitimate purpose showed up).  Anyway, the oncologist was making his rounds during the nutrition meeting so Tom had to leave for a good portion of it.  During this time a mother and son reminded me of what it felt like the first month of the diagnosis.

These two were seeking out every ounce of information and scared, so scared.  The son was particularly frustrated with his elderly father who wasn't particularly interested in his new-wave diet ideas.  His mother seemed more interested in what foods would keep her husband happy and comfortable.  If there was one thing the two seemed to be on the same page about, it was the frustration in change of taste and appetite.  While I can't say that it's something we have overcome (as it certainly is not) I can say that I've overcome the impulse to try and convince him to eat or the frustration and fear of his loss of appetite.  I have definitely fell fault to overstocking on things that he randomly becomes keen on and then when it's time has passed, we're left with a cupboard full of chocolate or jerky or whatever it is.

Anyhow, the point of the story with the nutrition meeting is: Get to one as soon as possible.  I kept forgetting to register, or forgetting when it was, etc. There was so much going on and so much stress those first two months... and once I was there, everything that was talked about and mentioned, we learned the hard way or through trial and error.  So, take it from me and register for an oncology nutrition group sooner rather than later.

The second meeting, the support group.  I'm not going to lie, we showed up to kill time.  Still not going to lie, when someone else came in and Tom had to go, I thought I should leave too, but stayed because I thought it would seem rude.  I still thought, "I don't need to be here, I'm just fine."  I was completely wrong, not that I necessarily needed help or support, but I was able to really reflect on my own feelings watching this poor tortured soul across the table from me, struggling with the fact that her very elderly mother was too old to have her leukemia treated.  That last bit aside, she was frustrated with the fact that her mother didn't want to talk about it.  She was newly diagnosed (it'd just been a month) and she really just didn't want to tell or discuss it with anyone.  Tom was that way.

I was able to give this woman some comfort when I was forced to remember those first few weeks.  Not wanting to talk on the phone to anyone, not wanting any of the informational pamphlets the doctors had, not wanting to talk about what he was feeling like, not wanting any part of what was going on other than just turning up and having them give him whatever it was without talking about it with him. There was a lot of self pity during those weeks, which is completely understandable, but heart wrenching.  There was a lot of frustration, confusion and fear.  The thing I most enjoyed sharing with her however, was that after a few weeks, my husband did something I'd never seen before.  As someone who doesn't do much conversing via facebook, more of a passive reader than a responder, he felt obliged to message one of my friends who's mother was in the hospital for unknown causes.

He told her that he knew his family felt the way she did when he was first diagnosed, that they were scared and felt helpless.  He then told her that the best thing she could possibly do for her mother is to just be there.  That for him the number one thing that made him feel better was knowing that his family was just in the room,whether he was conversing with them or playing with them or not... just their physical presence was enough to make him feel better.  It brought tears to my eyes as I told her this and told her how much it meant to me because up until that point I'd felt just the way she was feeling.  Helpless, scared and shut out because I had no idea what my husband felt like or how I could help him and to read that I had been helpful the entire time just by being there... just by being there.

The girl across the table from seemed to see the hope I was trying to shed for her, that with time her mother too will come around, but that no one... no one wants to face their own mortality and as those still feeling immortal, we cannot comprehend the time that acceptance it takes.  All week I've been thinking of these two instances (especially the second) and that's what's led me to think that maybe my thoughts and feelings can help someone else make sense of their own.

Why We're Here... Blogging That Is.

I originally began an "email list" where I would email various family members and friends updates on Tom's status during treatment.  Very recently I decided to begin a blog instead (as my tech skills would fail me with my overly long list of email addresses, which of course was nice, but I'd some how mess it up). The Leukemia Log was born from there.  This last week of Tom's treatment, we found ourselves in two different group meetings at the hospital as well and I found that I could use this form of communication (the blog) to possibly be of assistance to other's who find themselves in the position of caretaker or family member.

That has brought me here, writing a new blog, for a very different audience. Of course, if those whom are family or friends of ours find themselves reading this blog, that's okay too... though you may find yourself shedding a tear or two.

To begin, I'd like to share an excerpt of an email I'd wrote to my grandmother awhile back, when Tom was unexpectedly admitted into the hospital due to an e. coli infection that had everyone involved more than frightened.


I have come to realize the worst feeling in the world is not a physical pain, but a sense of helplessness when watching someone else endure an immense amount of discomfort and there being absolutely nothing you can do. I truly hope and pray that this is not a feeling I will have to revisit in life. There are moments where I just cry and wonder why I can't just have the answer. There are times where Tom just repeatedly says its not fair and asks why him and there really is nothing I can say other than "life doesn't work that way".  


To build off of this, my grandmother was the caregiver to my grandfather as he battled prostate cancer twice, the second time claiming his life.  Her response to me was that I "express this feeling so accurately".  When we (and I say "we" as mine and my husband's days seem to be so intertwined now) have a rather bad day, all I can think about are the words I expressed to my grandmother, there. For those who've had a loved one diagnosed with cancer, I'm sure this awful feeling is of no stranger.

I sort of intend for this blog to be more of the untold story. It's so hard as no one wants to hear in my updates of Tom how incredibly terrible he feels, how he can't stop thinking of the possibility of not recovering, how we both find it so hard to have been in a position where our lives were just beginning to fall into place and everything was happening in the right order and all of a sudden we were smacked in the face with a screeching halt to everything. No one wants to hear that, let alone seek it out to read every day.  They want to hear that he might have a bad day here and there, but overall things are going well. Not to say that we lie in our blog, but given that so many people are reading it, Tom would rather not have all of the details shared either.  Needless to say, I still maintain that these feelings need an outlet and perhaps they can shed some light for someone else in a similar situation.  If nothing else it's already beginning to feel therapeutic for myself.

In order to keep this not too incredibly long, I feel that I've explained myself and my purpose here... so I'll end this entry and try going for another.