A brief timeline

It's hard to believe that it has been almost a year since I applied as a candidate for this trial. It look a few months for my application to be reviewed and then I broke both of my arms (yes, both at once- thanks to all the steroids I have had to take to combat my relapses I now have brittle bones) so I didn't go in to Northwestern for an evaluation until Thanksgiving. We switched insurance at the start of the new year but didn't find out the plan details until February which is when were able to finish my evaluation. Since then I have been going down to Chicago every few weeks for testing.

Yup, that's a broke arm

I have had some allergic reactions to antibiotics before so there was a lot of testing to find out what they could give me. Good news though, it looks like it is now safe for me to have Keflex and pencil. They were all worried about this sinus infection I have had for probably about two unsympathetic years but I guess if the infection were to flare up while my immune system is depleted then it might kill me and that could be bad. 👻 I ended up having to have surgery to try to clear the infection...which it did but now I have a different type of sinus infection 🤕 The Infectious Disease department cleared me for transplant and now we have a plan moving forward for what antibiotics I should take.

I completed the last of the pretesting without further complications. A million tests were run and things came back pretty normal. There is even a test called the "Burt Series", not sure what it is testing for but I think it's cool that my doctor has a test named after him. Interestingly enough, we discovered that part of my lung isn't fully developed but we aren't supposed to worry about. Um ok well  I ended up having to stay in Chicago longer than originally planned

note to those going through pretesting in Chicago -- they will make you do a 24 hour urine collection. It has to be refrigerated the whole time, you can't drink alcohol before or during the test and they would prefer for any contrast dyes to be out of your system. They may not tell you any of this until you turn your collection in and you find out that you have to redo it. While it is also possible for someone else to turn in your collection for you, you may get scolded because there is a blood test they need to do at the same time that wasn't mentioned before.--

but it was really nice because I had more time to meet some other people going through the process. If you are going through this process I strongly suggest taking the time to physical meet some of the people. The Facebook group has been awesome but it's even better meeting these people in real life. It has been nice to meet up and talk with people even if it is just meeting them at labs. My HSCT brother did a really good job summarizing  how I felt after the week of pretesting in this video.

Now that pretesting is done, I will moving onto 2 weeks of mobilization. I will be getting my first dose of chemo during this time and then having my stem cells removed.


Below is an overview of the procedure timeline:

~Initial Evaluation (1-5 days)	*Lodging required	✔️✔️Completed November 2015
~Pre-Transplant Testing (1-2 Weeks)	*Lodging required	✔️✔️Completed June 2016
~Mobilization/Harvest Autologous SCT (10-14 days)	*Lodging required Admission to the hospital for one night only to receive chemotherapy (cyclophosphamide infusion). For the remainder of the stay, appointments and procedures will be outpatient.	🔜☑️currently in process June 2016
~Stem Cell Transplant (approximately 16-21 days) Patient will be hospitalized for the entire stem cell transplant admission.	A caregiver is allowed to stay in the room with the patient. There is a pull-out couch to sleep on and showers available for use in the hospital. Upon discharge, patients will need to arrange for housing if not going straight home from the hospital.	🔜July 2016

So why chemo?

I have gotten a couple of comments about treating my MS with chemo. Am I scared? Isn't it risky? I'm not scared. It has been a little nerve wracking because there have been a lot of unknowns in this process and much of it has been hurry up and wait but to be honest the thing I have been most nervous about was how my hair would turn out.

Gotta have blue hair

💇🏻 💇 🏻I wanted to cut it short so it wasn't as big of a shock when I lose my hair. And I dyed it blue because I wanted something funky and wanted to feel like a badass chick going into chemo. Unfortunately there were some problems at the salon, like all the color washing out the first time and it didn't really end up the color I wanted. I didn't really think it looked that good but I keep getting these random comments on the street which helps the self esteem.

Greek Runes: Strength overcoming challenge

I'm not nervous about this treatment because it has been proven to work. Dr Burt has successfully treated hundreds of MS patients. The treatment has fewer longer term side effects and more promising results than the other drugs. I know that the chemo will be a challenge but I can deal with short term suck for hopefully longer lasting good. I'd rather face a week of chemo than deal with the daily side effects that I was getting from some of the previous medications I was on.

I know it sounds odd but I'm excited to get chemo. I know it is my best shot at real recovery, at getting my life back to normal, because to tell the truth MS has been kicking my ass. I know that it is hard to see how the MS effects me sometimes and that a lot of times I appear relatively unencumbered but when the disease acts up it hits me hard. Like two months ago when I lost control of my hand due to a flare up. It took almost two weeks before I was able to use utensils again. Now things are pretty well back to "normal" but it took a much of steroids, time, and therapy to get there. Each time I have a flare up we never know what the symptoms will be or how long it will take to recover or to what extent I will recover. I'm ready for that not to be the reality I face every few months.

I'm in a Clinical Trial!!

It has been a long time since I did an update here. There were a few reasons why I stopped. My health got worse and it was physically challenging to do. Sometimes I wanted to write but didn't know how to keep things positive so just didn't say anything. I also let the haters get to me. There have been people who have accused me of faking my MS for attention. That has been a hard reality to face but I'm going to try to update more frequently and not let the haters get to me.

Quite a bit has happened since I last posted, I had to switch medications to Tecfidera because the Gileyna was causing me heart issues and it wasn't as effective as we wanted it to be. I was on Tecfidera for about two years before we started looking for another treatment option. I was still having flare ups every few months and the side effects were bothering me daily. It bothered my stomach and it caused severe flushing, it was super fun when the neighbor kids were afraid of me and said I looked like a monster. Turns out I have more energy now that I'm not taking Benadryl ever six hours, go figure. The main reason I finally stopped the Tecfidera is because I was accepted into a promising clinical trial.

Dr Burt at Northwestern in Chicago is doing a stage 3 study using a combination of your own stem cells and chemo to restart the immune system. He treats several autoimmune conditions with it and it has proven to be safe. This trial is comparing the efficiency of the treatment versus standard MS disease modifying therapies. Dr Burt will be treating me this summer with an Autologous Hematopoietic Stem Cell Transplant this summer to control my MS. What this means is that I will be receiving a transplant of my own stem cells after undergoing chemo. It is the same type of procedure that cancer patients receive but with the hope that when my immune system is wiped out that my immune system "forgets" that I had MS. 

Even better news, insurance has agreed to cover most of the costs of the treatment. Without insurance the price tag can be $150k or so. There are other facilities around the world performing similar procedures for less but insurance doesn't cover them and it is still +$40k, also known as more money than we can afford, so I quite grateful insurance is covering. I was also quite fortunate in that I didn't have to deal with any appeals and my neurologist supports this course of treatment, unfortunately a lot of patients have to deal with those obstacles but apparently our new insurance company and the doctors agree that I have a more aggressive form of MS and need a stronger treatment option. Hooray for insurance/doctor support but :( that that is the way my MS is working out. It has always been easy for me to help others, it is something that I love to do, but it is really difficult for me to ask for help but I’m asking now. Please support me as I undergo this life changing procedure. We are fundraising to help offset the costs that insurance will not cover. To make a tax eligible donation please visit https://helphopelive.org/campaign/10851. All donations will be going to my treatment costs. This website will be used in addition to my blog for treatment updates. 

I could also use your thoughts and prayers going through this procedure. I will be updating this blog more frequently and hope you will continue reading. 

March is driving me mad

No March madness excitement for me but March sure is driving me mad. I'm so glad March is almost over. I'm sick of this temperamental weather. Literally I am just sick from the constant weather changes. It gives me migraines and turns out my MS doesn't like it much either. The beginning of March I was fighting against the snow and ice but lately I have been fighting against the heat. 

I have never handled heat well. Getting heat stroke on many family trips was evidence of that. It doesn't matter how much I drink, I don't sweat. Even when I ran a half marathon I didn't break a sweat. On the rare occasions where I do sweat it doesn't cool my body off. So I gave up my childhood dream of being a paleontologist and I try to drink more. Turns out when you have nerve damage you become even more sensitive to the heat. The warm days lately have been making my head foggy and my hands numb. Anything above 78 degrees and I start to melt. 

Most people with MS struggle with the heat but I'm lucky and my MS affects me in cold as well. My numb feet can't detect ice so I just walk like a penguin everywhere. And if the temperature drops less then 34 ish it makes my spasticity much worse. Do you remember the old GI Joe miniatures? The ones with the rubber bands as legs muscle? If you stretched their legs too far the rubber band would snap and then they became a wounded solider with one less leg. Well that's about how I feel when I walk in the cold. I mean my leg doesn't actually snap off but it feels like it is going to.

So I'm ready for Wisconsin weather to pick a season or just stay at 70 all the time. So glad March is almost over. And another reason I'm excited for April is then it is only a few days til we leave for China!

Exciting News

So apparently I should have phrased that I have exciting news better. No, I'm not pregnant. And I guess this news may not be as exciting for you as it is for me. Anyways, my husband and I are going to China for my spring break! We will be spending a week in Beijing. We might being staying a little longer but we aren't sure yet. I found a great deal on Groupon so we decided to go. For less than the price of round trip air, we have a tour package that includes all transportation including flights, almost all meals and all admission fees. We weren't really planning on going to China but we both wanted to go there. It just wasn't on the top of the travel list because of the cost. But the great price bumped it up a bit. 

We will be visiting the Great Wall, a jade factory, the Olympic city, the Forbidden city, Tiananmen Square, the Summer Palace, a silk factory, the Capital Museum, and the Temple of Heaven. We will also being going on a rickshaw tour of the markets and for tai chi lesson in a park. Special food treats include a Peking duck dinner, dinner at a local families' house and visits to a tea house. We will being visiting some other stuff on our own as well but not totally sure what yet.

I have been trying to build my endurance lately so I won't need any assistance on the trip. We got a walker since I still don't have a wheelchair yet and the wheelchair won't work well with the steps. China isn't very handicap accessible or gluten-free friendly from what I have read. Unfortunately, there are not many tips I have found about how to adjust for this. Do you have any tips? I hope to bring back lots of information for others like me who maybe considering a trip to China.

School update

School has been going alright now that I am going to the correct campus. And I have not done the wrong homework for awhile. Silly classes taught by the same teacher with very similar coursework. At least it was going pretty well until this last week. 

All the sudden on Tuesday I had numbness and pain in my right foot. We were supposed to have a class field trip that day. The professor and I spent a lot of trying to figure out how the field trip would work so it won't be too much walking before I had to drive again and then I wasn't even able to drive to the field trip. It is good I didn't try to drive because my the end of the day, I wasn't able to put any pressure on my foot without a good dose of pain. Thankfully, the professor is going to go overview the highlights with me tomorrow. 

But my MS decided that it needed to interrupt my homework schedule even more. On Wednesday, my right hand was in so much pain it felt like my fingers were broken. No idea what caused this. Sometimes I still have hand muscle cramps from over use but it wasn't like that. It just hurt if I moved my hand at all. This pretty much through Friday so I really wasn't able to get any homework done. The super bad fatigue didn't help either. I managed to just barely finish all my homework by working the whole weekend. It looks like my workload is only going to increase from here so I hope my MS will start behaving a bit more. I'm so grateful that most of my classes are online otherwise I would be crazy behind right now. Right now it's all A's and I'm  keeping up with the coursework. 

I have news about my last brain MRI and neurologist appointment. I'll post more about that later hopefully with some sweet looking pictures. I have some other exciting news that I'll share soon as well. In the meantime, enjoy this video. http://work.failblog.org/2012/02/24/job-fails-tigger-dougie-summer-job/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+MthruF+%28Monday+Through+Friday%29

First day back

I certainly hope my first day of school was easier then my first day going back to school. I don't remember anything about my first day but somewhere their is a goofy picture with me and a backpack that looks giant on me. It very well might have been a Teenage Mutant Ninja Turtles backpack. 

Back to the land of 2011. Err 2012. Don't worry I'll stop 2011 on things in a few months. So I went to school early to pay tuition. It was a nightmare, they have overcharged me three times right now. After a brief lunch I went off to find my classroom. I'm a nerd so I always arrive super early so I can sit right up front. I went to the A building where my class was and room 120 was a small lounge area filled with vending machines. Didn't quite seem like the right place so I walked the couple blocks back to the main building. My schedule did say main building a120. Walked around for awhile and discovered that a120 was the where it said conseling. I was even more confused because I had no clue where my class was supposed to be and shouldn't the sign say counseling not conseling? Against my instincts I went in and asked for directions. Yep my schedule said main building a120 alright but in Oak Creek. I was in West Allis. And class started in 10 minutes. 

I quick got directions and hit the road. I got totally lost. I may have entered Illinois briefly. No clue where I went or how I got there. I frantically called the hubbie. Luckily I caught him during lunch and he picked up (apparently I have a habit of getting lost and calling and needing directions right when he is in the middle of a meeting). With directions I was on my way again until I ran out of gas. It's ok I pulled into the gas station just in time. I made it to class and I was only over an hour late. Google says it is a 20 minute commute. 

It was a rough first day back. I was exhausted and in pain from all that wandering around trying to find the write room at the wrong campus. I was ready to just go home and skip the class. It was really making me question whether or not this going back to school thing was a good idea. At least I didn't really miss much in class. The rest of the class worked on a get-to-know-you-partnership. I had to do a short write up instead.