Monday, November 29, 2010

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!

Thursday, November 25, 2010

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!

Sunday, November 21, 2010

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!

Wednesday, November 17, 2010

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!

Sunday, November 14, 2010

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

Wednesday, November 10, 2010

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!

Saturday, November 6, 2010

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.

Friday, November 5, 2010

Day 23- Medical Marijuana

Today has been much the same as yesterday. No new illnesses or balding.

So I will use this opportunity to talk about something that I have recently become very passionate about. Yes medical cannabis. Not that I personally need it or use it. But if you were in extreme chronic pain and had to choose between taking large doses of chemical pain killers such as OxyContin and Percocet (which carry the risks of addiction, liver damage and even death) or eat a tasty dessert that has been mixed with a cannabinoid like THC (which has the risk of...........developing a voracious appetite?) I think I would definitely choose the latter. Medical cannabis does not necessarily have to be smoked. It can be administered in many ways, such as vapourizing, drinking, eating and by taking capsules.

Medical cannabis can be used in the treatment of nausea, vomiting, premenstrual syndrome, asthma, migraines, fibromyalgia, arthritis, and is even found to be beneficial in treatment of patients with Alzheimers. Multiple sclerosis has many symptoms that can be treated with medical cannabis such as muscle spasms and pain. As a patient who has multiple sclerosis and is currently going through a stem cell transplant involving high doses of chemotherapy I hope that it is apparent why I have recently become so passionate about the topic of medical cannabis. The anti-nausea medications that I was on after my first dose of chemo had so many side effects that had to be treated with other drugs.  These drugs had side effects that had to be treated with a tertiary line of medications that also had side effects. So if a pill containing THC could be taken instead without any serious side effects, then hand it over.

I am happy I live in a country that is willing to open their eyes and see the benefits of this natural plant. It is legal for licenced practitioners (licenced to practice medicine in Canada) to prescribe medical cannabis. It took a long time to get to this point, but I am definitely proud to be a Canadian.

In the United States, the majority of the US states still do not allow the use of medical cannabis, despite its proven benefits. The US government has even paid to have studies conducted to research the benefits and risks of marijuana. The findings showed that there weren't really any serious risks with using marijuana. It is not an addictive drug and you can't overdose on it. There were many medical benefits that needed to be further researched. But because they have been telling people that marijuana would cause them to commit crimes and want to do other drugs like heroin for so long ,they decided that turning a blind eye to the facts would be the best idea for the American people........or at least for their political agendas. I think that it is wrong to put someone in jail for up to 5 years because they are trying to ease the pain that results from their chronic illness. But enough said. I feel I could go on forever about this topic and I'm probably no longer making sense, so I will end my ranting with a few links for those who are interested in this topic.

http://www.youtube.com/watch?v=2BC2-DuMzoQ

http://www.medicalmarihuana.ca/

http://www.youtube.com/watch?v=bM_vLk1I6G4 (This was an actual anti-marijuana film that was released in 1938 and financed by a church group that intended it to be shown to parents as a morality tale attempting to teach them about the "dangers" of cannabis use.)      

Thursday, November 4, 2010

Day 22- Pleasant Surprises

So Erin left today to go home for her best friend's wedding, and has thus left me to write the blog posts for the weekend. I'm sure it will be easy to tell that I do not have the same calibre of writing skill as Erin (major difference between engineers and communications advisers). I will try my best to keep the blog interesting and informative.

I had the pleasure of receiving a couple of care packages today, which included a giant Mrs. Fields cookie, some more movies to watch, a couple of magazines and some tostitos and dip. It was a really nice surpise (hence the title of this post). I've attached a photo of the gifts I received today.

My health has been really good so far. It really doesn't feel like I should be on disability. However, having a weakened immune system is not something that you can feel if you are strictly following all of the doctor's orders (i.e. stay away from germs). The arm rashes are finally starting to calm down as I continue to use the Hydro-Cortisone. As Dr. Atkins told us at our appointment yesterday, it may take up to a week to fully go away.

My hair has still yet to start falling out. Erin gave me strict orders to make sure that I don't lose my hair before she returns on Sunday. I don't know if I really have any control over that, but I'll try my best. She doesn't seem to deal well with the ever-changing hair. 

And now I have come to the end of my first full blog entry. Usually my role in this blog is developing ideas for blog topics and I leave the writing up to Erin. So I hope I did a good job with this one. And lastly I would like to end this entry with a shout out to my wife Erin. I am still healthy and not bald.

  

Wednesday, November 3, 2010

Day 21 - A Setback

So today we ended up going into the hospital where we received both good news and bad news. To start, we ended up going into the hospital because last night it appeared that the rash that Chris was having had spread to the rest of his body. He had marks all over his stomach, chest, back and head. When we called the hospital to let them know, they were a little concerned and asked us to come in so that Dr. Atkins could take a look at Chris.

So here is the good news:
- The rash was nothing serious. It turns out all the marks all over his body are seperate to the ones on his arm. The ones on his arm are likely an allergic reaction to the tape that they used when he had his stem cell collection. The marks on his body are due to Folliculitis (an infection of the follicles). It is nothing serious and they will likely clear up on their own. It apparently is really common in immunocompromised patients. Chris needs to continue using the hydrocortisone and it should clear up.

Here is the even better news:
- When Dr. Atkins walked in the first thing he said to Chris was, "Wow, you still have all your hair! Are you sure you even had chemo?" That definetly felt great to hear. Everyone seemed surprise with how well Chris is doing. Chris also was cleared to have visitors as long as they aren't sick, to go out to restaurants (as long as it not fast food or any of the high risk foods), and to leave the house (as long as we aren't going to really busy areas, i.e. the mall on weekends, the movies or sporting events).

Now here is the bad (and frustrating) news:
- We found out today that since the bone marrow transplant (BMT) team received an ususally high number of leukemia patients this Fall, that Chris is now being bumped until the beginning of December. They can only have a limited number of patients go through the BMT at the same time, and since leukemia patients are much more time sensitive and in a far more serious condition, they get to go first. It is completely understandable and extremely frustrating at the same time. We were hoping after we heard how great Chris was doing that we could start as early as next Thursday and now we have another month of waiting and thinkng and more waiting.

We also now need to change our plans. Originally I was planning on taking off work until the end of December, work from home in January and then return in February. Now that Chris won't be starting until December he will still be needing me to be off work until the end of January. Since I am already maxed out on sick leave, I will need to look at working from home right now. Chris' doctor does not think that Chris should be going back to work. Even though he feels fine, he is still susceptible to infection and if he overexerts himself or comes into contact with people who are sick, it could delay his BMT even longer. The longer we wait, the more likely Chis will have a relapse since he is not on any MS medications.

Finally, we did get some updates from Dr. Atkins on the procedure. Since we had been seeing a bunch of different doctors, we had been getting a lot of different answers when asked about the specifics of Chris' procedure. Since Dr. Atkins is the expert on the treatment for MS patients, he was able to clarifiy some things for us. Instead of having a Hickman catheter, Chris will have a peripherally inserted central catheter  (PICC), which will be inserted in a vein in his arm and fed up his vein into his chest (kind of gross!) He will be able to keep it in for six months, and he will need to keep it dry.

We also learned about the chemo regimen Chris will be on. He will start with four days of busulfan, one day of rest, then four days of cyclophosphamide, then another day of rest, and then two days of antithymocyte globulin.

So now that we have a better grasp on what we can expect, he unfortunately will not be getting it until December.

Tuesday, November 2, 2010

Day 20

It's very strange to think that we started this blog 20 days ago!  We don't have a lot to update today. We are still battling to get rid of Chris' hives/rash. Another trip to Shoppers Drug Mart today, so hopefully we have figured out the magic combination. We are mainly getting anxious for the second part of this procedure. We know it is going to be incredibly hard and the more time we have before the procedure, the more time we spend reading how hard it is really going to be. Since Chris is feeling relatively healthy right now,  we want to start before he gets sicks (or I get sick) with anything.

All of this time also makes you wonder and question your decisions. While I know that this made the most amount of sense for us to do now, when you have a lot of time to think about things, you always wonder whether your decisions is going to work out for you in the end. It is entirely possible that this procedure might not produce the same results as it did for other patients. That is the issue when you have a disease that you don't understand the exact cause, you don't know how to stop it from coming back.

The only other news we have to report is that since I will leaving Thursday afternoon to attend my best friend's wedding this Saturday, Chris will be taking on the main blogging role. And they bettter be good, Chris! I know I am probably going to be checking the blog at least 8 times a day to make sure you are doing okay.

Monday, November 1, 2010

Day 19 - CCSVI

Almost exactly a year ago at this time, we started getting emails and comments from friends and family about  a new breakthrough in MS called Chronic cerebro-spinal venous insufficiency (CCSVI). In November 2009, it was reported that an Italian doctor, Paolo Zamboni claimed that MS was not an autoimmune disease and that it was due to malformed or blocked veins in the neck that couldn't adequately drain blood from the brain. Zamboni claimed a buildup of iron in the brain ensues from this blockage, causing vertigo, fatigue, vision problems and loss of sensation. He also announced a new "liberation" procedure that involved using a form of angioplasty — injecting and inflating balloon catheters into dilated veins to increase blood flow.

Since we announced that we were doing the stem cell treatment, a lot of people have asked us if we had considered doing this liberation treatment instead.

To be honest, before we even knew about the stem cell treatment, we tried desperately to get Chris' neck scanned to see if he had CCSVI. Unfortunately, in Canada and the United States this scan is not covered as it is considered experimental. Last May, after trying for months, we eventually were able to get Chris on a waiting list to have his neck scanned (if it was confirmed that he did have it, we would need to pay upwards of $20,000 to have the liberation procedure performed in another country such as Costa Rica, Germany, India and Kuwait), but to this day we have yet to hear anything. There are trials now going on in Canada and the United States, but since there are approximately 75,000 Canadians with MS, the spaces filled immediately.

Now, after learning a lot about both treatments, there is not a questions in our minds that we made the right decision. Since the announcement of this treatment, several different trials have come out with mixed results.
A large ongoing study in Buffalo only showed that 62% of MS patients had CCSVI, but so did 26% of the healthy participants, as well as 45% of participants with other neurological disorders. A medical centre in Amsterdam has found no difference between the veins of MS patients and healthy participants. Also, while many patients diagnosed with CCSVI have undergone the treatment have reported great results, there are patients who have undergone the procedure and have not felt any improvements. This procedure is also relatively new, and there are no research on the longterm effects. We definetly understand why so many people are spending money to get it done. When we had no other options we were definetly planning on doing it. It just wasn't the right choice for us.

In other news, Chris is still doing well. We are expecting a call from the nurse coordinator tomorrow to see if there is anything else Chris can take to bring down his hives on his arms (yes, they are still there!).

And on a much lighter note, here are some photos of our Halloween costume last night. We were bikers and obviously really tough ones.