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! :)
Sunday, April 14, 2013
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.
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