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!
Monday, December 30, 2013
Monday, September 30, 2013
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.
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.
Friday, June 28, 2013
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.
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.
Tuesday, June 25, 2013
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!
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!
Tuesday, June 11, 2013
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!!!!!
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!
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!
Wednesday, May 29, 2013
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.
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.
Saturday, May 18, 2013
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!
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!
Friday, May 17, 2013
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.
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.
Sunday, April 14, 2013
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! :)
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! :)
Monday, March 18, 2013
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!
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!
Thursday, March 14, 2013
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.
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.
Monday, March 4, 2013
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.
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.
Thursday, February 28, 2013
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
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During his second "induction" round of chemo... a 3 week hospital stay at Sutter General Nov 2012
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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!!!)
Saturday, February 23, 2013
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:
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.
Friday, February 15, 2013
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!!!
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!!!
Sunday, January 20, 2013
Brighter Days
So we're back at home now, which is such a relief. The back and forth is tiring and I feel awful for poor Izzy being alone all week. There is such an immediate difference in Tom when he leaves the hospital! He even drove home yesterday! I'll admit, I was a bit skeptical, but he assured me it was okay.
It's nice to wake up and not be rushing to get somewhere or worrying about getting something done. Every day this week I had an appointment to be somewhere, so I am current still in bed, sipping my coffee, blogging, and it's 9:30.
Niners are playing today and I think that may be the only "plan" on the table. Tom is never able to sleep first few nights home (probably due to the constant interruptions at the hospital nightly), so I think it'll be a slow going day.
Days like this are the best. Dr. Carroll also seems to think that this will hopefully be Tom's last maintenance chemo so hopefully he'll have a somewhat larger break this time before going in for transplant. :)
Tom's birthday is in just two days! What to do?
It's nice to wake up and not be rushing to get somewhere or worrying about getting something done. Every day this week I had an appointment to be somewhere, so I am current still in bed, sipping my coffee, blogging, and it's 9:30.
Niners are playing today and I think that may be the only "plan" on the table. Tom is never able to sleep first few nights home (probably due to the constant interruptions at the hospital nightly), so I think it'll be a slow going day.
Days like this are the best. Dr. Carroll also seems to think that this will hopefully be Tom's last maintenance chemo so hopefully he'll have a somewhat larger break this time before going in for transplant. :)
Tom's birthday is in just two days! What to do?
Thursday, January 17, 2013
In The Clear For Me... Murky Waters For The Main Man
So my scan had the best possible outcome- The mystery mass disappeared! They had two people ultrasound me just to make sure and it was all good. Apparently it left as quickly as it'd arrived. A giant sigh of relief. I must say though, I was rather calm for me... I calmly sat in the waiting room of women only (awaiting their mammograms I assume based on chatter and their entry into door 1 instead of door 2, I enjoyed two shortbread cookies from the elegant cookie display, looked at a magazine for home DIY projects that I'll never do but think I will; Yes, I did well. I did eat an entire pint of ice cream to myself last night... But apart from the initial scare and shock of "what-if" on Tuesday, I was rather cool about it. Well done me.
Tomorrow I have my pre-op appointment for next Thursday's carpel tunnel surgery and then I will have completed a medical visit for every day m-f this week! That's me done. Thing's are looking up! Perhaps I can move past my doom and gloom that I've been in the last couple of weeks. I now look forward to foster-adoption someday and have again come back to surrendering myself to divine plans rather than my own (which is sometimes so darn hard!).
Tom on the other hand, is at his sorrowful stage. Today he said he wished he lived closer to family and his brothers (which I wish we weren't so isolated as well), then he said he "wants his mummy and daddy" and said he doesn't think people know how hard it is. To which I said, of course they know how hard it is, but he has me here and they have other very important things to tend to and it's just how it is, but by no means does absence equal minimization of his situation. He then acknowledged that he knows that, but I know he wants to be closer and feel more tended to. Poor guy. He asked what happens if a match isn't found and he said I can't contest with it not being possible and then (probably the worst bit of today) he said "of he doesn't have long he wants to spend it with his family." Again, he said I can't contest because I can't say for certain... What does a person do with that?
It also doesn't help that he said those latter things after I returned from the caregiver's support group where two of the patient's were on a second and third transplant. BUT they were not leukemia patients and the previous transplants were autologous (from themselves) and were both doing allogeneic (donor) ones this time. So it doesn't really apply to Tom, but it does make me wonder how often leukemia patients have to transplant more than once. But I'm not goin to dwell, I'm goin to keep things positive because I can't worry about the unknown... Now how to convince my husband to do the same.
Tomorrow I have my pre-op appointment for next Thursday's carpel tunnel surgery and then I will have completed a medical visit for every day m-f this week! That's me done. Thing's are looking up! Perhaps I can move past my doom and gloom that I've been in the last couple of weeks. I now look forward to foster-adoption someday and have again come back to surrendering myself to divine plans rather than my own (which is sometimes so darn hard!).
Tom on the other hand, is at his sorrowful stage. Today he said he wished he lived closer to family and his brothers (which I wish we weren't so isolated as well), then he said he "wants his mummy and daddy" and said he doesn't think people know how hard it is. To which I said, of course they know how hard it is, but he has me here and they have other very important things to tend to and it's just how it is, but by no means does absence equal minimization of his situation. He then acknowledged that he knows that, but I know he wants to be closer and feel more tended to. Poor guy. He asked what happens if a match isn't found and he said I can't contest with it not being possible and then (probably the worst bit of today) he said "of he doesn't have long he wants to spend it with his family." Again, he said I can't contest because I can't say for certain... What does a person do with that?
It also doesn't help that he said those latter things after I returned from the caregiver's support group where two of the patient's were on a second and third transplant. BUT they were not leukemia patients and the previous transplants were autologous (from themselves) and were both doing allogeneic (donor) ones this time. So it doesn't really apply to Tom, but it does make me wonder how often leukemia patients have to transplant more than once. But I'm not goin to dwell, I'm goin to keep things positive because I can't worry about the unknown... Now how to convince my husband to do the same.
Wednesday, January 16, 2013
A Bit of a Scare Myself
I'd like to start by saying I have been very dilligent about doing my yearly exams and last year I had a false positive read, but if that wasn't the worst day of my life leading up to that point, not sure what was. It was the most liberating feeling to be told after further tests and frequent ones, that I was good. Then of course Tom was diagnosed and that became the worst day of my life.
Anyway, as if we don't have our fair share of cruddiness at the moment (if only it worked that way, right? "Oh, you've definitely reached your limit... let's just pass the house burning down over to the next person."). The other night I noticed a "lump" on the side of my breast (may be "tmi" for some, but this is what happened)... I may have even thought I'd noticed it before during a "shower check" but dismissed it to paranoia. Well it was a little more obvious this time... and then I sought out a second opinion from Tom to see if I may have been over reacting. The look on his face required no verbal verification, but of course he verified with, "See the doctor tomorrow!"
So I did. And it wasn't paranoia, there's definitely a mass of some sort. Estimated at approximately 1/2 cm, presumed to (hopefully) be a cyst. Tomorrow morning I have an ultrasound on it to see what it is (apparently even at the finding of a mass, due to my age no mammogram is necessary). If it is a cyst, it will be dealt with then and there. If it is something more serious, nothing happens tomorrow, I follow up with the doctor again and we go for further tests. While she seems highly convinced it's a cyst... I'm still rather frightened about the other possibilities. So here's to hoping that tomorrow I have to get a needle in the breast to remove a cyst. The things that you cross your fingers for with age.
This year is not starting out as well as I'd hoped it would. Tom reassures me that we'd have to be the most unlucky pair in the world if we both have cancer...again, if only things could be so certain based on equal distribution eh? Communism of luck haha! Then again, it wouldn't be "luck" if so expected/divided... Now I'm putting way too nuch thought into the philosophy of luck. Happy Wednesday! Cross your fingers for me! Channel that "good luck"!!!
Anyway, as if we don't have our fair share of cruddiness at the moment (if only it worked that way, right? "Oh, you've definitely reached your limit... let's just pass the house burning down over to the next person."). The other night I noticed a "lump" on the side of my breast (may be "tmi" for some, but this is what happened)... I may have even thought I'd noticed it before during a "shower check" but dismissed it to paranoia. Well it was a little more obvious this time... and then I sought out a second opinion from Tom to see if I may have been over reacting. The look on his face required no verbal verification, but of course he verified with, "See the doctor tomorrow!"
So I did. And it wasn't paranoia, there's definitely a mass of some sort. Estimated at approximately 1/2 cm, presumed to (hopefully) be a cyst. Tomorrow morning I have an ultrasound on it to see what it is (apparently even at the finding of a mass, due to my age no mammogram is necessary). If it is a cyst, it will be dealt with then and there. If it is something more serious, nothing happens tomorrow, I follow up with the doctor again and we go for further tests. While she seems highly convinced it's a cyst... I'm still rather frightened about the other possibilities. So here's to hoping that tomorrow I have to get a needle in the breast to remove a cyst. The things that you cross your fingers for with age.
This year is not starting out as well as I'd hoped it would. Tom reassures me that we'd have to be the most unlucky pair in the world if we both have cancer...again, if only things could be so certain based on equal distribution eh? Communism of luck haha! Then again, it wouldn't be "luck" if so expected/divided... Now I'm putting way too nuch thought into the philosophy of luck. Happy Wednesday! Cross your fingers for me! Channel that "good luck"!!!
Monday, January 14, 2013
Ah, January
So, January is here and actuallu half way over, wow! So many mixed feelings. January felt a lifetime away on July 25th (the day Tom was diagnosed) and yet it has crept up unbelievably fast! While I know dwelling does no good, I cannot help do anything but at times. I have been actually fighting the urge to blog about this for about a week, but here I am. I can only think it's been on Tom's mind too, as his recent continual comments would lead me to believe so.
January was the marking point we'd set in July to start trying for children (being that we were looking to purchase our first home previous to his diagnosis). January is here and we are so far from children it's unbelievable. Sure, it seemed like when this would be over we could jump aboard that train with the specimens we were able to freeze, but with our recent chats I decided to look into what that'd entail and it costs about $9,000 just for the first try which doesn't particularly have a good success rate... the second try is $8k, the third $7k, and those discounts are only if done within a year of try one. That's a lot of money for a maybe. While this is for in vitro, the price for just artificial insemination (which is even less successful) is still $2,000 a try and then you're also gambling away what little we have stored away.
Tom has asked me probably five times just in the last week if I'd be open to adoption, he also for the first time spoke about it with a colleague who asked about children and said adoption would be rather suitable as both our mothers were adopted. He constantly "jokes" about how we will mever have children now, and more recently also made a remark about how I'll never have a baby in my belly because he can't give me that ... I knew it wasn't something he was happy about, but I think it's really hit me that it's maybe just as hard on him as it is on me that we may never have children. Did I memtion the average adoption is 20-30k dollars?!?!
Ah, January. Also marks Tom's birthday... he'll be 26 next week!!! Now everyone knows a little too much about my lack of a reproductive future, but holy cow is it pretty crappy... and more so now that I know my husband is also upset about it. I guess we may become the crazy dog couple afterall.
January was the marking point we'd set in July to start trying for children (being that we were looking to purchase our first home previous to his diagnosis). January is here and we are so far from children it's unbelievable. Sure, it seemed like when this would be over we could jump aboard that train with the specimens we were able to freeze, but with our recent chats I decided to look into what that'd entail and it costs about $9,000 just for the first try which doesn't particularly have a good success rate... the second try is $8k, the third $7k, and those discounts are only if done within a year of try one. That's a lot of money for a maybe. While this is for in vitro, the price for just artificial insemination (which is even less successful) is still $2,000 a try and then you're also gambling away what little we have stored away.
Tom has asked me probably five times just in the last week if I'd be open to adoption, he also for the first time spoke about it with a colleague who asked about children and said adoption would be rather suitable as both our mothers were adopted. He constantly "jokes" about how we will mever have children now, and more recently also made a remark about how I'll never have a baby in my belly because he can't give me that ... I knew it wasn't something he was happy about, but I think it's really hit me that it's maybe just as hard on him as it is on me that we may never have children. Did I memtion the average adoption is 20-30k dollars?!?!
Ah, January. Also marks Tom's birthday... he'll be 26 next week!!! Now everyone knows a little too much about my lack of a reproductive future, but holy cow is it pretty crappy... and more so now that I know my husband is also upset about it. I guess we may become the crazy dog couple afterall.
Thursday, January 3, 2013
Getting Back On Track
We moved here this time last year and in the first two months I'd successfully lost 15 lbs which was awesome... until it crept back on. Since Tom's diagnosis in July I've added an additional 25 to that. Appalling. Granted, I'd stopped kickboxing and working two jobs at the same time and suddenly began full days of next to no activity and lots of boredom eating... but that's no excuse.
Starting with calorie counting and the dog walking that I should do anyway... hopefully it might make a start toward the dent I'd like to create. Maybe, just maybe, I might find myself at the "gym" here in the apartment complex... though I imagine the three workout items are probably always utilized with everyone's "resolutions". I'd like to think I could get out and run again, but considering I was nearly 50lbs lighter the last time I did that as a regular thing... I think not.
Next on the list is I best start packing up the apartment. Lease is up in March and we will want to be moved by the time Tom's transplant is in "go" mode. While we would like to stay here (neither of us want to move to Sacramento), the 43.6 mile round trip drive is a bit much every day.
Well, there's that... my goal is to hopefully regain some confidence and be fit enough that people don't think my husband "settled". Plus, I've got so many belly stretch marks and no child to show for it... that's a bit embarrassing. Wish me luck on finding that inner thin person who I'm certain has been murdered long ago.
Starting with calorie counting and the dog walking that I should do anyway... hopefully it might make a start toward the dent I'd like to create. Maybe, just maybe, I might find myself at the "gym" here in the apartment complex... though I imagine the three workout items are probably always utilized with everyone's "resolutions". I'd like to think I could get out and run again, but considering I was nearly 50lbs lighter the last time I did that as a regular thing... I think not.
Next on the list is I best start packing up the apartment. Lease is up in March and we will want to be moved by the time Tom's transplant is in "go" mode. While we would like to stay here (neither of us want to move to Sacramento), the 43.6 mile round trip drive is a bit much every day.
Well, there's that... my goal is to hopefully regain some confidence and be fit enough that people don't think my husband "settled". Plus, I've got so many belly stretch marks and no child to show for it... that's a bit embarrassing. Wish me luck on finding that inner thin person who I'm certain has been murdered long ago.
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