Day -5



Thirsty? I was paranoid that Chris wouldn't have enough liquids
for the Cyclo portion, so I went out and bought orange juice,
apple juice, milk, 12 cans of diet coke, 12 cans of lemonade,
12 bottles of Gatorade, and 4 sparkling orange drinks.

 Chris pretty much just summed up today. Right before I started writing this blog, he turned to me and said, "I hate Cyclo."

For some reason, this type of chemo just does not sit well with Chris. Within an hour of them starting the chemo, Chris was noticeably different. He was tired, had the chills (but no fever!), and just felt awful. He also is not a fan of having to make himself go the washroom every hour. However, this time he seems to be able to go to the washroom every hour (knock on wood) and he doesn't seem to be retaining the liquid like he did during the stem cell collection (see previous posts).

We were at the hospital at 9:00 this morning, which we learned is the absolute worst time to arrive. The hospital is apparently experiencing high patient volume right now. Due to this,  finding a parking spot is maddening. After they did the usual tests (vitals and blood), Chris started on two hours of hydration, then two hours of Cyclo, followed by another two hours of hydration. During this time, he did some baseline tests with the physiotherapist, who recommended a bunch of exercises for Chris during the procedure. We also met with the social worker again, who is really great. She asked us a bunch of questions about our family, our living conditions and how we were going to cope during the procedure.
We also met with the pharmacist and one of the clinical physicians on the floor to discuss whether Chris would remain an out-patient for the Cyclo. We decided to try the Cyclo as an out-patient, but if Chris has any problems again, or if he is just too tired to being going back and forth then they will admit Chris for the Cyclo portion.

However, Chris may still be admitted despite our best efforts even if he can manage the Cyclo and staying awake for four days. Apparently we are expected to get 50 cm of snow on Sunday, and since it is a known fact that everyone loses their ability to drive in Ottawa when we get our first big snowstorm of the year and Chris' transplant is really time sensitive, we may stay over the Sunday night to make sure that Chris is there without any issues.

Tomorrow, we are starting bright and early at 7:30. Since Chris is starting the antithymocyte globulin (ATG) tomorrow we are going to be there all day. We will do four hours of ATG, followed by two hours of hydration, two hours of Cyclo and then another two hours of hydration. The may give the ATG over a longer period of time (up to 10 hours) if Chris has an allergic reaction to the ATG. This happens in some patients, however, if they slow down the infusion it will stop the reaction.

Until then we will be up every hour on the hour, so if you can't sleep tonight, feel free to send us an email or text because we will likely be awake :)

Day -6

It was great having a day off from the hospital today. The hospital did call though and we will be starting up at 9:00 am  tomorrow. We were really happy about this, because it is nice to get it over with and if anything goes wrong it gives us lots of time to call them and not use the emergency after hours number. You may remember that everytime something goes wrong we tend to go to the hospital at midnight.

 Chris still had to take his medications, make sure to rinse with the saline rinse (approximately 8 times a day), take his temperature (no fever!) and monitor his liquid input and output. So far, he seems to be inputting a lot more than he is outputting (too much info?), so it is something that we will definetly bring up to his doctors tomorrow. We also started packing a little suitcase in the event that Chris is admitted, so that we will have some overnight things ready at a moment's notice.

Luckily, Chris still has not had any major symptoms. He does find that he is really jittery and anxious (as if he had drank 8 cups of coffee) and is still finding it hard to sleep despite taking sleeping pills. We had our first opportunity to sleep in this morning, and Chris was awake at 7:30. For people who don't know Chris well, he has been known to stay in bed for most of the morning when given the opportunity.  He also started taking more anti-nausea medication, but has not yet been sick.

I spent the day trying to clean the house as much as possible, including taking Lysol wipes to anything that I think Chris may touch. I think I seriously may be getting paranoid about Chris not getting any germs.

After today, we will be at the hospital every day until the transplant and then I am not really sure what to expect. We know that Chris will likely get really sick after this, but the only previous patients that we spoke to did the treatment as an inpatient, so they stayed in the hospital for at least an additional week or two. I am assuming that this means that we will be going to the hospital on a daily basis just to check Chris' blood and give him antibiotics. While on one hand, I don't really like the idea of Chris living in a hospital for a week, there is definitely a part of me that likes the idea of having trained medical professionals working just outside Chris' door.

Day -7

Today was a big milestone. We are now only a week away from Chris' stem cell transplant (meaning no more chemo) and Chris finished his Busulphan portion of this whole process.



Chris with our portable tree so that we can
celebrate wherever we are on Christmas!



It's funny, because going into this Busulphan was the chemo drug that we were most scared of. In the clinical trial for this procedure in MS patients, there was one patient death and it was due to liver failure caused by this chemo. It also listed scary side effects, such as seizures and lung problems.  Knowing this, I guess we sort of assumed that as soon as Chris started this drug, that he would become extremely sick. Turns out...not so much. Now we know that many of the side effects caused by chemo drugs are not felt until at least a week later. However, by that time Chris will have been treated with two chemo drugs, ATG and about 20 different medications, so it will be a bit harder to point the finger at one culprit. And the real reason I think I personally like the Busulphan so much is because I never had to rush Chris to hospital because of it yet. Our tally to date (Busulphan 8, Cyclo 0)



Which bring us to the next chemo drug: Cylcophosphamide. Chris will get a rest day tomorrow. A day that we have REALLY  been looking forward to. Chris will continue to take his medications tomorrow and we need to start tracking all his liquid intake and outake. They gave us a really fancy contraption (a plastic urinal) to do it too!  It is just an extra precaution to ensure that Chris is able to empty his bladder as with Cyclo this is extremely important. We spoke with one of BMT doctors and we are planning on playing it by ear on whether Chris needs to stay in the hospital for this portion. We will need to get lots of rest for tomorrow, in the event that we will be up every hour on the hour for the next fours days!

We also had the chance to meet with the program's nutritionist and physiotherapist today. Their main concerns were making sure that Chris was able to get enough nutrition when he starts getting nausea and mouth sores and that he doesn't lose too much muscle mass when he is tired and not feeling well.


We went over all of the foods that Chris should stay away from (raw eggs, deli meat, uncooked vegetables, any fast food etc.) and the kind of food he needs to eat (high calorie, high protein). The nutritionist even talked about trying to jam pack as many calories as you can into your food. Are you having a calorie milkshare like Ensure? Well you should put in a blender with ice cream, chocolate, peanut butter, and maybe even throw in some cookies, and you can get up to 700 calories in one drink. Since I was trying to squeeze into my wedding dress less than three months ago, it is taking a lot to beat this into my mind that I need to buy the product that has the MOST calories possible.



Some of the patients that get really bad side effects, especially mouth sores, find it really hard to force themselves to eat, so we even discussed the possibility of a feeding tube. This absolutely horrified me at first until I found out what a feeding tube was. I was under the impression that it was a giant tube that they put down your throat that you can't talk with (you know, the things you see on Grey's Anatomy and House all the time). Well it turns out that a feeding is a tube smaller than an IV and it just goes in your nose. You can't feel it and you have no problem talking with it. All of this TV drama really does distort your medical knowledge.



As convenient as a feeding tube sounded, Chris has already become OCD about rinsing his mouth with saline to prevent sores. There is just something more appealing about eating your own food.



As of today, Chris is doing really well. He has started taking more anti-nausea medication and doesn't feel as great as he did before, but considereing his last four days, he is pretty much my hero for how well he is doing. He also continues to ask me "How are you doing? Are you okay?". He tends to ask me this when his vein is being injected with a highly toxic agent. I think I picked a keeper :)

Day -8

Who would have thought sitting in bed for hours would be so tiring?

We are now finished three days of busulphan with only one more to go and we are both exhausted. This is most likely due to the lack of sleep we have been having lately. Luckily, however, the sleeping pills that they put Chris on yesterday (Zopiclone) worked much better. They also made him a lot funnier. Chris decided to take the pill an hour before we went to bed, because he felt the Ativan took too long to kick in. We were watching the last period of the Leafs game when he turned to me and told me he felt drunk. By the time we went to bed, he looked like he was drunk as he swayed back and forth up the stairs. By the time I went to turn off the lights, he was making absolutely no sense, but fell asleep instantly.
This morning he could not remember any of this. He did not remember watching the end of the Leafs game, the shoot out, that the Leafs had won, or that we had high fived repeatedly when it happened.

The other medication that they gave Chris yesterday was for his hiccups. Unfortunately, it has not been as effective. You may remember from previous blog posts that Chris gets hiccups from taking steriods. One of his anti-nausea medications, Decadron, is a steriod that Chris needs to take for ten days and it has caused him to hiccup almost non-stop. The episdoes can last for hours at a time, seperated only by short periods of relief. The best way for Chris to get rid of them remains resting his head on our cold, kitchen counter with all of the lights off. Weird? Yes, but effective.

Today we receieved a mixture of saline and water that Chris needs to start rinsing his mouth with. Since, it is very common to get mouth and throat sores with the chemo regimen that Chris is on, they want him to start taking it as a  preventitive measure.

We also discussed with the nurse today the idea of being admitted during his cylclophosphamide. This is the chemo drug we do not have very fond memories of. They aren't sure why, but Chris retained all of the water he drank when he took the cyclo, which is problematic when you need to go to the bathroom every hour. They aren't sure if it has something to do with his MS and since all MS patients that did this procedure before did the whole procedure as in patients, they definetly think it may be an option. We may try and bring it up with one of Chris' doctors tomorrow before we get our break day on Tuesday.

Finally, the only new update for today is Chris is now required to wear a mask whenever he is in the hospital and not in his room. Since this time of year is full of people with airborune illnesses (and they all seem to want to hang out at the hospital), they want to take every precaution to make sure Chris is safe. It's funny the way people react to someone wearing a mask. When we went into the hospital this morning, nobody thought twice about standing near Chris. However, when we left you could definetly tell people were keeping their distance and glancing over at him with concern. I am sure I would do the same thing in their position, but at the same time I just wanted to announce to the elevator "He is wearing a mask because he doesnt want to catch anything from YOU!"

Day -9

Chris is  now halfway through the Busulphan now and starting to get some side effects from the chemo and the drugs.
His blood results showed that his kidney was having trouble with chemo, so they told Chris he needs to try and drink a lot more liquids to try and dilute the chemo.
His blood sugar is also pretty high, which apparently is pretty common with one of the drugs he is on. They are going to monitor it and if they don't come down, they will try putting him on something else.

Some of the other side effects are not as serious and others are a litttle humourous. Chris definetly has been sufferieng from a little bit of "chemo fog." He came downstairs to grab a pair of scissors to cut open a milk bag and ended up going upstairs with the TV remote.
My favourite example of his mind lapses came when he was Christmas shopping online for me last night. Chris wanted to surprise me this year and pick out a gift without any hints.

After he had been on the laptop for an hour and did his best to make sure I didn't see the screen, he glanced over at his pills and said, "Do any of my jewellery cause these side effects?" He then looked at my shocked and said, " I mean do any of my gifts cause...I mean do any of my medications cause these side effects?" I guess he sort of let it slip what I was getting for Christmas this year, but I can't say that I am that disappointed. Chris on the other hand has been beating himself up that he managed to ruin another surprise.

To cheer him up, we spent the night decorating the house and our beautiful tree for Christmas! We have photos for your enjoyment :)

Unfortunately, in addition to the mind lapses, Chris also had a really hard time falling asleep last night. He took an Ativan at 10:30 when we went go to sleep, but still had not fallen asleep at 4:30. He took another Ativan at 4:30, which seemed to work and he was able to sleep until 7:30 when we got up to go to chemo this morning. When he woke up however, he had absolutely no balance. He looked like he had been drinking heavily as he walked around to the bathroom, and I needed to steady him multiple times. While some of the drugs can cause dizziness, they also think that for some reason the Ativan or another drug has triggered an MS symptom. They perscribed him another sleeping pill for tonight and they hope to see an improvement by tomorrow.

Today's chemo was mostly uneventful. We arrived at 9:00 and Chris was hooked up by 10:45. We also had a room to ourselves today, which was really nice! Chris' nurse also tried putting on a different dressing on his PICC line, because it was still really red and irritated.

For the rest of the night, we are just planning on taking it easy and hopefully getting some much needed sleep!

Day -10

Today was Chris' first day of chemo for the stem cell transplant, and it was a very long day. We reported to admissions at 8:15 and Chris was formally admitted to the hospital. The benefit of this is that Chris can opt to stay any night, if he isn't feeling well enough to go home. However, for the first time, we were in a shared room since Chris is not currently at risk for infection.

After that it was off to the immunocompromised section of the hospital for bone marrow transplants and blood cancers (5 West), where Chris had all of his vitals checked, blood work done and we did a bunch of patient questionaires. They also cleaned and redressed Chris' PICC line. Since the PICC line goes directly into the large vein beside the heart, they have to be really careful about anything contaminating the site.

By about 11:00, Chris was finally hooked up to the Busulphan, which he received for 3 hours. Throughout the chemo, we met with a pharmacist, doctors, a social worker, and the assissant to the manager on the floor. We are trying to find out new ways to pass the time while at the hospital. We found out that the hosptial has wireless Internet, the only problem is that it rarely works (by rarely, we mean never). Since we were in a shared room, we couldn't watch a movie or a television show. So instead Chris played 17 games of Free Cell and I am almost finished my second book.

We also received Chris' medication chart for the next little while.
Dilantin to prevent seizures (three pills three times a day for the first day and then once a day after that for five days).

Ursodiol to protect the liver (one pill four times day).

Allopurinol to protect the kidneys (one pill once a day for nine days).
Zofran to prevent nausea (one pill twice a day for 10 days).
Decadron to prevent nausea (two pills twice a day to prevent nausea).

Chris was also given a bunch of other medications to use on an as needed basis.

Prochlorperazine for additional nausea (one pill every four hours as needed).

Maxeran and Benadryl for additional nausea (two pills and one half pill of Benadryl every 4 hours as needed).

Ativan for sleeping problems and anxiety (one pill every six hours as needed).

So far, we are much bigger fans of Busulphan than the Cyclophosphamide. Other than feeling a little dizzy, Chris is doing well. He can continue to drink coffee and we don't need to wake up every hour on the hour (Busulphan 3, Cyclophosphamide 0).

Day -11

Where do we begin?

Well, first I will start with the title of this blog post. We received Chris' schedule today and that is what they refer to today as. Since Chris will be receiving his stem cells on December 13, they refer to it as Day 0. Everything that happens before that is just a countdown to that date, so today is T minus 11 days until the transplant. Make sense?

So here is what Chris' schedule looks likes, and it is more or less what we expected.

December 2 - Planning appointment, and PICC insertion.

Yes, Chris was surprised this morning when we got a call saying that he was getting his peripherally inserted central catheter (PICC) line in today. This is the cathether that they insert in his arm and feed up through his vein into his shoulder and down near his heart. Chris was not looking forward to this at all, but they froze the area, it only took an hour and he didn't feel anything! The benefit of the PICC is that it limits the amount of times Chris needs to get needles. The downside is that he can't get it wet, so he will need to shower with a bag around his arm.

Chris also starts his anti-seizure medication tonight as the chemotheraphy that he begins tomorrow may cause seizures. I am very happy about this, because I have had a fear of seizures every since I was trained as a lifeguard at 16. Of all the things to worry about, I know it shouldn't be that high on my priority list, but seizures just look really scary.

December 3 - Chris is admitted to the hospital (this is so he doesn't need to go through emergency and he can choose to stay at the hospital if he doesn't feel up to going home). He also meets with the pharmacist where we learn all about the drug regimen he will be on. And of course, Chris will start his first chemo drug, Busulphan, for four hours. He also takes medications to prevent gout and damage to his liver.

December 4 - Chris has 2 hours of Busulphan

December 5 - Chris has 2 hours of Busulphan

December 6 - Chris has 2 hours of Busulphan

December 7 - Chris gets a rest day from chemo and stops taking his anti-seizure medication. We have to start monitoring Chris fluid intake and output to make sure that chemo is quickly getting out of his system, because the next day we start Chris' favourite drug, Cyclophosphamide (sorry, for the sarcasm).

December 8- Chris start Cyclophosphamide for the next four days. This was the chemo that Chris took in November that requires you to drink every hour and go to the washroom every hour. This was the chemo that required us to go to the hospital at midnight, because Chris decided to retain all of the liquid (yes, I am blaming him for this!) Since getting up every hour for four days straight is extremely exhausting, we will have the option to admit Chris and have him hooked up to hydration and catheterized. He is still deciding on that one.

December 9 - Chris will have Cyclophosphamide and an infusion of Antithymocyte Globulin (ATG). While the chemo drugs will wipe out his white blood cells, this medication will wipe out his T cells (the cells that are behind multiple sclerosis). Since ATG is derived from the serum of rabits and horses (weird, I know) the body reacts against it and you have an allergic reaction. Due to this, they will be giving Chris a bunch of allergy medications to prevent this. The ATG is also given slowly over a long period of time to limit the reaction.

December 10 - Chris will have Cylclophosphamide and ATG.

December 11 - Chris will have Cylclophosphamide and ATG

December 12 - Chris will have ATG and hydration.

December 13 - Chris will get his purified stem cells back! Apparently they are kept in dry ice and it looks really cool when then bring them out to defrost them. I promise to get photos of that!

They told us that following all of this, that the hard part will then begin. Approximately 10 to 14 days after this Chris will hit zero white blood cells and have no immune system. It will then take another two weeks until he starts to stabilize. During this time he will get antibiotics to treat infections, Intravenous immunoglobulin (IVIG), which I am pretty sure is a blood transfusion, and our good friend Neupogen to boost his stem cell production. Neupogen was the other drug that hospitalized Chris last time due to the extreme pain he was in. Although we have been assured that it will not be painful this time.

Chris will continue to have the IVIG once a month for a year and will need to keep his PICC line in for about 6 weeks.

So we promised you a nice long post, and I think we delivered. We also threw in the last picture for fun! We figured this blog entry was far too serious.

Oh and a quick thank you for the Christmas trees, decorations and treats we received. We are decorating our house tonight and we will show it off in future posts!