Day 47

Today will be the last time we post before Chris starts his procedure on Thursday and we go back to our daily posts. Chris is planning his last night out for 2010 on Wednesday and is already making meal requests before he starts chemo (we have been told by quite a few people to not eat your favourite foods while on chemo). Speaking of which, if anyone who has undergone chemo has any tips, please send them our way by posting a comment or sending us an email (look in the About Me section for the address). The Internet, although extremely helpful, tends to have a lot of conflicting information on what helps when you are undergoing chemo.

Leading up to this, we have become obsessed with the television show House. We recieved 5 seasons of the show from a friend, and I am sure all of the doctors will be happy to know that I am now too an expert in diagnostic medicine (naturally). I would like to forewarn you all that future reports may also include some of my own diagnosis that I have learned all about, such as the bubonic plague and African sleeping sickness (according to the show, they appear to be more common than we think!) Essentially, I would just like to forewarn anyone else thinking about doing this procedure that it is a terrible idea to watch House (or any medical show for that matter) before doing this treatment, because now I am far more paranoid for a million rare conditions that Chris may somehow get.

Alright, that is everything for now. Be prepared for a super long post on Thursday. We are going to be receiving a lot of information that day!

Day 43 - It's the Final Countdown

Well we are just a week away and it really does feel like our countdown is coming to an end. Since we made this decision back in May and then had Chris accepted to the program in July, we have been counting down the days until he would start his transplant. We are just one week to go.

Since I am back to working at home, Chris is finding new ways to entertain himself throughout the day. He is feeling really good and isn't sleeping the 12 or 13 hours anymore, so he has been doing some grocery shopping, some cleaning and he even makes me breakfast! I could seriously get use to this :)

In the rest of his spare time, he has taken on the role as Team Captain for Team Glazier, our team for the 2011 Walk for MS in Ottawa.

On Sunday, May 15, Chris and I will be taking part in the 2011 Walk for MS. This year will mark the 20th anniversary of the walk, which raises money for the MS Society of Canada. While we can walk as individuals, the MS Society also has the option to build teams, so that we can fundraise, walk and support Chris together.

For our family and friends that are interested in joining Team Glazier and want to make the trip to Ottawa that weekend, you can register online at: http://mssociety.ca/en/events/scwalk/online-fundraising.htm

Each team member is responsible for raising $125, but once we get our team together I think we can set a much higher goal! Today is the first day of registration, but if you start early it gives you lots of time to collect funds.

Can't make the trip? Or just want make a donation to our Team?

You can sign up to do the walk in your area (dates and times vary). You only need a few friends to make a Team or you can walk as an individual. The walk is either 2km or 5km so anyone can do it! If you can't make the walk, but still want to make a difference, you can send a pledge to Team Glazier online at the same URL: http://mssociety.ca/en/events/scwalk/online-fundraising.htm Just search for Team Glazier!

Day 39 - Role Reversal

This weekend was a little bit different in our house. This was mainly due to a bit of a role reversal between Chris and I. After finding out on Thursday that I needed to have my wisdom teeth removed within the next month (yes, the worst timing ever!), my dentist did me a huge favour and took my wisdom teeth out on Friday.

As someone who has never had any dental work done, this was a REALLY big deal for me. I was put on Tylenol 3s and antibiotics all weekend. Chris jumped into the role as caregiver and I was now the patient.

We learned fairly quickly that we are both better off in our original roles. Chris, although he had good intentions, was constantly fogetting that my jaw was in pain and would accidently poke my face or pinch my cheeks. He would also offer to make me a snack or buy me a treat with foods I wasn't able eat ( I was basically on a soup, ice cream and apple sauce diet).

Luckily, Chris' parents were in town for the weekend, so they were able to rescue me from caregiver for awhile. They wanted to see Chris before he started his procedure in a week and half and we got some early Christmas gifts :) We also learned that December 2 (Chris' start date is good luck in his family). It is the same day that Chris' mom started her job eight years ago and it is same day as Chris' parents' first date!

We also wanted to let everyone know that once we start this procedure on December 2 (11 more days!), we will begin blogging daily, or as often as we can.

We also wanted to thank everyone for all of the support we have recieved. We now have followers from all over the world and are just under 3,000 hits!

Day 35

So we finally have received a date from the Bone Marrow Transplant team.

Chris will begin the second half of this procedure on Thursday, December 2. We will be going in for our planning meeting (similar to the one we did on Day 1) where we will get our full list of appointments, as well as a detailed chart of all the drugs Chris will be on.

Next, on Decemeber 3, Chris will be admitted to the hospital and have his PICC line inserted and start chemo again. While Chris will technically be doing out-patient treatment, they will admit Chris as he will be at the hospital everyday and will very likely need to be admitted overnight throughout.

While the full schedule still needs to be approved by Dr. Atkins, we were told that the stem cell transplantation is tentatively scheduled for Monday, Decemeber 13. This is often referred to a "Day 0". After this day you start recovering and building a new immune system. Some people even consider it their new birthday. Chris will likely try and pull off having two birthdays now.

I didn't realize how incredibly nervous I was about this until we found out the date. I am finding the need to make lists of things we will need. What to pack in our hospital bag? What to buy for groceries that Chris will be able to eat? Having a Type-A personality can really drive you insane during something like this.

On a much brighter note, Chris and I will be celebrating our two month wedding anniversary tomorrow! Yes, I know, it is pretty huge milestone. But I figured since we missed our one month anniversary (if you look back you will see we celebrated by getting to do Chris first neupogen injection! It was very romantic) and our three month anniversary is sort of out the window, that two months is as good a reason as any to celebrate.
So tomorrow I have assured myself that Chris will:
a) remember, and
b) come up with some romantic gesture, an elaborate surprise, that will surely knock me off of my feet and remind me why I married him.

He, of course, did NOT just realize these facts after finishing reading this blog post and is NOT now sweating profusely.

I'm kidding. Happy Anniversary, Chris! I hope our next month of marriage is full of little surprises and lots of luck!

Day 32 - Hair today, gone tomorrow

A few days ago Chris' hair finally started to fall out. I guess when I originally envisioned Chris losing his hair, I expected him to wake up one morning and he would just be bald (I am not sure where his hair would have disappeared to, maybe the "hair fairy"?). Or maybe he would have a shower and it would just all wash off. Now that I am writing this down, I realize how silly it sounds.

Instead, Chris has been slowly shedding. We noticed at first tons of hair lying on his pillow, then on his shirt, then on his face and now basically everywhere he sits. I essentially just follow him around with a lint brush. I never realized how much hair he has though, because even though he has lost thousands of hair, he still has a slightly thinner head of hair.

The good news story of all of this? I now have evidence that Chris steals my pillow at night. For years, Chris has denied that he steals my pillow away from me at night, but now that his hair covers half of my pillow in the morning, I have forensic evidence that says the contrary.

We know that a lot of other people with MS are now following our blog, so we thought we would post a couple big news stories that have happened this week for those who are interested.

- On Tuesday, the Collège des médecins du Québec (CMQ), a body that represents Quebec doctors, advised MS patients to not have the "liberation treatment." The body stated that scientist don’t know whether the blocked veins cause the disease or are a symptom of it, and whether they have anything to do with the onset of symptoms.
http://www.theglobeandmail.com/news/national/quebec/quebec-mds-warn-against-controversial-ms-treatment/article1792585/

-CTV followed up with a number of Canadian patients who have underwent the "liberation treatment" in other countries with negative results
http://www.ctv.ca/CTVNews/Health/20101112/ms-liberation-stents-101113/

- A summary of an international conference on the treatment and research of multiple sclerosis that took place in Gothenburg, Sweden on October 13-16 was posted on the MS Society website.
http://mssociety.ca/en/research/medmmo_20101102.htm

Day 28 - Sign the Charter!

We finally received some good news! SunLife has finally approved Chris' short term disability, so we no longer have to worry about how we are going to deal with that aspect of this procedure. We still do not have any word on a start date though. Dr. Atkins did indicate that we should get a call this week, so fingers crossed that it will be earlier rather than later.

On a separate note, a lot of people have asked us if there is anything they can do to help us. We have been so lucky to receive so many thoughtful packages, but one way that you can all really show your support is by lending your voice (or signature) to the Stem Cell Charter. Chris' procedure is supported by the MS Society, the Ottawa Hospital Research Foundation and the Stem Cell Foundation. The Stem Cell Foundation is a Canadian non-profit that works to improve research and awareness on stem cells. They currently have an online charter that is a collective call to action in support of stem cell research.

Chris and I have learned so much about stem cells and how they can not only help MS patients, but they may help defeat diseases such as, Alzheimer's, blood cancers, deafness, diabetes, blindness, heart failure, lung disease, muscular dystrophy, Parkinson's disease, spinal cord injuries and stroke.

What we find most important about the stem cell charter is that it advocates five key principles for stem cell research:
1) Responsibility to maintain the highest level of scientific quality, safety and ethical probity
2) Protection of citizens from harm and the safeguarding of the public trust and values
3) Intellectual Freedom to exchange ideas in the spirit of international collaboration
4) Transparency through the disclosure of results and of possible conflicts of interest
5) Integrity in the promotion and advancement of stem cell research and therapy for the betterment
of the welfare of all human beings

We have read so much about "stem cell tourism" around the world. These are private clinics set up in different countries that offer unlicensed treatments at high prices for some of the most debilitating diseases with desperate patients.

I do not know enough about any centre or treatment that are currently offered, and would not want to speak badly about any specific clinic, but there has been a lot of media attention about terrible results after patients have been lured with promises of cures. Unfortunately in this world there are a lot of people that are willing to take advantage of people and this is why I am such a strong supporter of this charter as it advocates for education, transparency and protection for patients.

Here is the link where you can see a quick little video and sign the charter (in the top left corner!)
http://www.stemcellcharter.org/
You can also see my stem cell by typing in my email!

Day 24- It Feels Like Winning the Lottery

Again, there is not much change from yesterday. I am still feeling pretty good and am managing to hold onto my hair. We have decieded that since we have awhile before the next part of the procedure that we will only post a two to three times a week instead of once a day. We thought we would let you all know so that you didn't worry if we didn't post. No news is good news. Once we start the second part of the procedure we will start posting once a day again. And as soon as we get the start date, we will let you all know.

I will use this opportunity to discuss how being given the chance to have this procedure feels a lot like winning the lottery. It is a bitter sweet victory. It is bitter that I have developed this disease, but sweet that I qualify to have this ground breaking treatment performed. I am grateful that I live in the only Canadian city offering this treatment for multiple sclerosis. I am blessed that I live in a country that has a public healthcare system that is willing to pay for this procedure and for having a wife who went to extreme measures to research this procedure. She got in contact with patients who have had this procedure and helped me get in contact with the physicians performing this procedure.

I know it might sound kind of strange to say that getting the opportunity to have high dose chemotherapy and a stem cell transplant is a lot like winning the lottery. But in my case it really is. I really am in the right place at the right time. I have a great team of medical professionals looking after me including hematologists, neurologists, clinical physicians, administrative assistants, advanced practice nurse coordinators, BMT liaison nurses, clinical dieticians, clinical pharmacists and social workers.

I told myself and Erin that all I want to get out of this procedure is a halt in the progression of this disease, or dare I say, “a cure”. And if I see any improvements, that is just the cherry on top.