Today is Day 7 and I've been on a steady decline since the transplant. The first couple of days were okay, then as my blood counts began to drop the problems started.
A couple days after the transplant was when the 'tummy troubles' started. At first I thought this was just a side effect of the chemo, but a test showed that it was Clostridium Difficile. I won't go into too much detail about that, I'll just say that it has been horribly unpleasant. My nurses now have to wear a gown and gloves in my room so that they don't transfer it to any other patients with compromised immune systems. Visitors are still allowed and don't have to don the hazmat suit, but only if they're healthy and don't have anyone at home they could pass it to.
The next round of excitement was on Day 5 when I couldn't keep any food down. I also noticed a little blood in what was coming up, but that was attributed to the sore throat I'd had coming on for a few days and the retching can cause tares.
Day 6 brought even more excitement when I spiked a fever. Once I get a fever they have to do blood cultures and they have to poke me for that. They do one set from my Hickman line, but a second set from a vein to make sure that there isn't an infection in my line. After 3 needle pokes, they were able to get blood from a vein, only when my nurse tried to get it in the bottle for cultures, it had already started to solidify and couldn't be used. Two more pokes later and they were finally able to get a sample they could use.
Day 6 also brought worsening of the sore throat caused by Mucositis. I've experienced this before, but this time it is at the back of my tongue and down my throat. It is also causing burning all the way down into my chest. It is incredibly difficult to swallow and I now have a spit sucker (like at the dentist) at my bedside.
And today, Day 7. The C Diff seems to be getting better. I'm still running a fever quite often. The mucositis is even worse, so they have switched all my meds to either liquid form or IV so I don't have to worry about swallowing pills and as of tonight, they've started me on TPN - so I am now getting my food through my IV too. Oh... And as of today, my hair has started to fall out.
Things can start getting better any day now...
Tuesday 24 July 2012
Tuesday 17 July 2012
Day 0
Well, my new birthday has come to a close. The day was rather uneventful, which is a good thing. Chelsea completed her second round of harvest this morning then I was given her stem cells in the afternoon. Two bags in total and it took no more than an hour. Now we play the waiting game for Chelsea's stem cells to set up camp in my bones and get to work. I've passed the first step on the road to recovery - and it's going to be a long road.
Day -1
They didn't require anything from me until evening, so I was able to spend the night before at home. This was the big day for Chelsea, and luckily, because I didn't have to be in my room for anything, I was able to be with Chelsea during the harvest.
Things didn't go so well for her in the morning. She is supposed to be hooked up to the machine with a large needle in each of her arms. They got the needle in her right arm, but couldn't get one in her left. My baby sister's vein's are too little. This meant they had to have a central line put in her - not a comfortable procedure. I will never doubt how much she loves me!
They finally got everything set up around 11am (3 hours late) and completed the harvest at 4pm. They were only able to collect about 3/4 of what I need so she's back at it again for a second day.
Things didn't go so well for her in the morning. She is supposed to be hooked up to the machine with a large needle in each of her arms. They got the needle in her right arm, but couldn't get one in her left. My baby sister's vein's are too little. This meant they had to have a central line put in her - not a comfortable procedure. I will never doubt how much she loves me!
They finally got everything set up around 11am (3 hours late) and completed the harvest at 4pm. They were only able to collect about 3/4 of what I need so she's back at it again for a second day.
Day -4 : -2
I wasn't able to update, as my eyes were still so out of focus from the medication that I couldn't stand to look at the computer screen, but basically all I spent my days and nights doing was sleeping in between meals. To everyone's surprise, I have been very hungry - which is a good thing, so let's hope I can keep that up.
Thursday 12 July 2012
Days -6 & -5
The last two days have been pretty uneventful. I am still having issues with my eyes from the Dilantin, so I have pretty much just been laying around with my eyes closed driftin in and out of sleep. Things I would enjoy doing but cannot: read books, read magazines, plan my wedding. Hopefully this will get better after a few more days. On a positive note, I get to spend the night at home again tonight. This will be the last night that is allowed to happen.
Tuesday 10 July 2012
Day -7
I did not sleep at all last night. I forgot how bright it is in a hospital room. On top of that, the dressing for my Hickman line was too tight and pulling the skin and the cleaning solution was making me horribly itchy.
I woke up this morning feeling much betther though. No more pain at the incision site in my neck, more like an overall ache, as if I've been punched in the chest. I'm sure that will go away over the next couple of days.
Other side effect so far seem to be from the Dialantin (seizure meds) - blurring my vision (I'm typing this with my eyes closed and Kendall will proofread later) and making me a little dizzy. I only have to put up with the for a few more days, and they may adjust the amount I'm getting tomorrow.
Overall my day went well though. I had a couple of visitors and then got the great news that I was allowed to leave once my chemo was done running and spend the night at home. So now I'm at home with my fiancee and my puppy for the rest of the night. I'm a lucky girl!
I woke up this morning feeling much betther though. No more pain at the incision site in my neck, more like an overall ache, as if I've been punched in the chest. I'm sure that will go away over the next couple of days.
Other side effect so far seem to be from the Dialantin (seizure meds) - blurring my vision (I'm typing this with my eyes closed and Kendall will proofread later) and making me a little dizzy. I only have to put up with the for a few more days, and they may adjust the amount I'm getting tomorrow.
Overall my day went well though. I had a couple of visitors and then got the great news that I was allowed to leave once my chemo was done running and spend the night at home. So now I'm at home with my fiancee and my puppy for the rest of the night. I'm a lucky girl!
Day -8
Okay, so I'll start by explaining the title. You would think today would be day one, but it is not. It is actually Day -8 because it is 8 days before the transplant date. The date of the transplant is called Day 0, then they count up starting at 1 the next day.
So, back to the beginning and one day at a time...
Day -8 began with an early alarm clock and a fight to get out of bed... It was so cozy and I was cuddling with my sweet puppy for the last time in at least 3 weeks and was not looking forward to getting my day started. Eventually I hauled my ass out of bed and took my Dilantin - a drug they gave me to start prior to starting chemo, as the chemo I'm now getting can cause seizures and this will hopefully prevent them.
Kendall had the day off work to take me to the hospital, so I got dressed and we hit the road (all 5 min of it from home to here) and arrived at my scheduled admittance time of 6:30am. I got registered and then was ushered down the hall to Day Surgery to have my Hickman line put in at 8:00 am.
The Hickman line insertion is an interesting procedure from what I understand, although I couldn't see, nor did I care what was going on at the time... But here's what I'm told: The insertion site is at my jugular which is where they cut an opening and thread everything through. One end of the tube ends up in a large vein near my heart (superior vena cava) and the end with the ports (lumens) is brought out through a new incision in my chest. This is all done in Radiology so they can see exactly where everything is going once it's inside. Now I'm sure this procedure is a lot more complicated than the dumbed down version of the layman's version I was given first thing in the morning with no coffee in me and before the sedatives, but this is what you get.
Here's what it looks like on the inside:
And on the outside...
If you look at the two separate white spots, these are where they've packed the dressing at the insertion (top) and exit (bottom) sites.
After the Hickman was inserted I was able to be brought up the the 7th floor where I will set up camp for the next few weeks. I was temporarily in a ward room with 3 other patients until my private room was ready. I am required to be in a private room as once the chemo does its job I will no longer have an immune system (let's hope this works!). After lunch and a quick cat nap, my room was ready for me to move in. I have had my first round of chemo (Busulfan) which will continue once a day for the next 3 days before the switch to a different chemo drug.
That's all for Day -8. Stay tuned...
So, back to the beginning and one day at a time...
Day -8 began with an early alarm clock and a fight to get out of bed... It was so cozy and I was cuddling with my sweet puppy for the last time in at least 3 weeks and was not looking forward to getting my day started. Eventually I hauled my ass out of bed and took my Dilantin - a drug they gave me to start prior to starting chemo, as the chemo I'm now getting can cause seizures and this will hopefully prevent them.
Kendall had the day off work to take me to the hospital, so I got dressed and we hit the road (all 5 min of it from home to here) and arrived at my scheduled admittance time of 6:30am. I got registered and then was ushered down the hall to Day Surgery to have my Hickman line put in at 8:00 am.
The Hickman line insertion is an interesting procedure from what I understand, although I couldn't see, nor did I care what was going on at the time... But here's what I'm told: The insertion site is at my jugular which is where they cut an opening and thread everything through. One end of the tube ends up in a large vein near my heart (superior vena cava) and the end with the ports (lumens) is brought out through a new incision in my chest. This is all done in Radiology so they can see exactly where everything is going once it's inside. Now I'm sure this procedure is a lot more complicated than the dumbed down version of the layman's version I was given first thing in the morning with no coffee in me and before the sedatives, but this is what you get.
Here's what it looks like on the inside:
After the Hickman was inserted I was able to be brought up the the 7th floor where I will set up camp for the next few weeks. I was temporarily in a ward room with 3 other patients until my private room was ready. I am required to be in a private room as once the chemo does its job I will no longer have an immune system (let's hope this works!). After lunch and a quick cat nap, my room was ready for me to move in. I have had my first round of chemo (Busulfan) which will continue once a day for the next 3 days before the switch to a different chemo drug.
That's all for Day -8. Stay tuned...
Saturday 7 July 2012
making memories
I'm down to my last two days at home before I go back to the hospital and I've been making the most out of all of the time I have with my loved ones before the transplant.
In the last week Kendall and I had our families over for a backyard party to enjoy some time while I'm still feeling well and had a blast. We had good BBQ and cold drinks and greata company. Thank you to everyone who came - it was so great to spend some time with you all!
After the party, Kendall and I travelled up to our boat for a couple of days to relax by the water and enjoy the Canada Day fireworks on the beach.
Following our relaxing time at the boat, we decided to head up to Niagara Falls for some good old fashioned, cheesy, touristy fun. We had a beautiful view of the falls from our hotel room.
After checking into our room, Kendall told me he had booked us something cheesy and touristy to do later that afternoon... Looking forward to some fun, I just went along with whatever he had planned. We ended up going to beautiful Hillebrand Winery in Niagara on the Lake for a wine tasting, tour and dinner in their four diamond restaurant.
After dinner we walked to the Winemaker's Lookout to see the beautiful view of the vineyard where Kendall got down on one knee and proposed!
When we got back to our hotel room that night, we got to see the beautiful fireworks show on the American side of the falls (which Kendall will gladly take credit for as part of the proposal!).
The next day, we spent some more time having fun at The Falls, then took a detour on our way home to stop in toronto to see LMFAO at the Molson Amphitheatre.
After what is probably the best week of my life, I don't want to spend the next month or so stuck in a hospital room, but at least I will have a lot of wonderful memories to bring with me!
In the last week Kendall and I had our families over for a backyard party to enjoy some time while I'm still feeling well and had a blast. We had good BBQ and cold drinks and greata company. Thank you to everyone who came - it was so great to spend some time with you all!
After the party, Kendall and I travelled up to our boat for a couple of days to relax by the water and enjoy the Canada Day fireworks on the beach.
Following our relaxing time at the boat, we decided to head up to Niagara Falls for some good old fashioned, cheesy, touristy fun. We had a beautiful view of the falls from our hotel room.
After checking into our room, Kendall told me he had booked us something cheesy and touristy to do later that afternoon... Looking forward to some fun, I just went along with whatever he had planned. We ended up going to beautiful Hillebrand Winery in Niagara on the Lake for a wine tasting, tour and dinner in their four diamond restaurant.
After dinner we walked to the Winemaker's Lookout to see the beautiful view of the vineyard where Kendall got down on one knee and proposed!
When we got back to our hotel room that night, we got to see the beautiful fireworks show on the American side of the falls (which Kendall will gladly take credit for as part of the proposal!).
The next day, we spent some more time having fun at The Falls, then took a detour on our way home to stop in toronto to see LMFAO at the Molson Amphitheatre.
After what is probably the best week of my life, I don't want to spend the next month or so stuck in a hospital room, but at least I will have a lot of wonderful memories to bring with me!
Sunday 1 July 2012
8 days to go
I've had all of my doctors appointments and everything looks good to go ahead with the transplant!
Over the last couple of weeks my sister and I have had a bunch of tests done to make sure we're both healthy enough to go through the transplant.
It started with a pulmonary function test. You'd think since breathing is something we all do all day every day this wouldn't be that difficult... Think again. Crazy breathing patterns, holding your breath and inhaling and exhaling as hard and long as you possibly can is extremely difficult. Luckily the technician decided my results were good enoughband didn't makenme repeat it all anfew more times.
Next was the EKG and ECG. As it turns out I do have a heart... And it beats and everything! I saw it!
Finally I had to collect urine for 24 hours (don't confuse it with the apple juice when storing in the fridge) and 14 vials of blood taken.
At Chelsea's appointment she also had 14 vials of blood taken and a bone marrow aspiration. Odldly enough she handlednthe bone marrow better than the blood. Needless to say I love her a lot and may have to take her shoe sopping when this is all over.
So now I am enjoying every minute of freedom until 6:30 am Monday July 9 when I will be admitted back into the hospital.
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