stemcellsarecute

[stemcellsarecute]

Summer Job and CBS

Hello!

For the few who still read this, I have exciting news!

For the summer I have landed myself a job at Pierre Grey’s Lakes Provincial Park in Northwestern Alberta! I will be starting as a seasonal information officer in June and I am beyond excited! Please come visit!

I also have exciting news for next week. I have volunteered to do community outreach and public speaking for Canadian Blood Services and I am super excited about it! Next week will be my first event. On Tuesday I will be doing a morning interview for our local radio station, Radio NL, and on Tuesday afternoon I will be doing a television interview for our local station as well!

Our goal for these interviews is to bring in more people to the blood donor clinics. I would also like to raise awareness about Aplastic Anemia and the stem cell registry! 

I hope you are well. 

[stemcellsarecute]

One Year (One Month Late)

Woohoo! It is 2017 and I have passed the one year post mark!

As many people likely know, I now have curly hair. It has taken a while, but I am learning to like it. It is super weird at times still, but hair grows. 

I have also started school! I am attending TRU in Kamloops currently and am kind of loving parts of it. I am enrolled part time on campus and then part time through TRU-OL (online courses). Unfortunately, much of what I wanted to take this semester is not actually offered in the winter semester, so I took what I could and am stuck with Calculus 1 and Technical Writing for my on campus courses. For my online courses I am taking Human Geography. So this semester is not really my favourite, but what can you do. I have been doing math like every day for hours and part of me is enjoying it but also it is killing me/destroying my brain. But that is all part of the learning process.

I am currently also toying with the idea of transferring to the University of Manitoba for their BSc program, which is almost the same as here, however they have an entomology department and you can get your minor in entomology there, which you can’t do at any other Canadian university. But I am still unsure and will see. I am applying anyways, just in case. 

Kamloops is a fun city. There isn’t too much going on, but earlier this year I went to the Women’s March downtown and it was really cool! There were so many people there who just wanted everyone to love each other and have body autonomy. People of many races, ages, genders, etc, etc. It was really cool and it was a really big comfort in the wake of America’s political disaster. 

I am also very angry about Justin Trudeau breaking his promise by keeping the current electoral system. So uncool, JT, so uncool. I really wanted proportional representation and almost everyone else I know, regardless of political opinion, wants it too. It makes me very angry. I had a fit about it yesterday, but I am trying to keep it together now. 

Onto happier things, there are so many bald eagles here! Ah! Also, I am loving learning again and have made some solid acquaintances! It is so cool to be in the real world again!

I visited my doctor last week using telehealth, which is essentially doctor skype. I was given my immunization request and now I am allowed to get immunized, and I have been given the okay to travel on planes (as long as I am careful)! I’ve been applying for summer student jobs related to environmental science (if you know of any jobs let me know), so I am not sure what the summer holds. If I can’t get a job though, I would love to travel somewhere. 

More later.

Happy trails, friends.

Bailey S

[stemcellsarecute]

[stemcellsarecute]

Stem Cells are Cute turned 1 today!

Its been a weird time, but a time nonetheless. 

[stemcellsarecute]

Oops

I haven’t been updating this much because there isn’t really much to update. I moved away from Calgary, AB and am currently living in Kamloops, BC. I like it here because my family is close and it is beautiful (duh).

My health was good for a while, but since mid-September my counts have been falling. My new doctor put me back on cyclosporine to see if it will help. I’ve been on cyclosporine for about 11 days now and am waiting to see what will happen, that is whether my counts will stabilize or otherwise keep going down. 

If they stabilize, I may be on immunosuppressive therapy for a while, which consists of medications like cyclosporine. Eventually they would try to take me off of the medications and see if my counts continued to be stable or not. 

If they fail to stabilize and keep dropping, I am likely going to see many more transfusions and will be subjected to another transplant. Though this time it will be cells from a stranger, or an allogeinic transplant. My two previous transplants, as you likely know if you’ve read my other posts, were from my sister, a related donor AKA my sister. If I need another transplant I will likely be receiving it in Vancouver at the VGH, which is in the coolest neighbourhood. 

It’s kind of a bummer for me, but so was my last transplant and the one before that. Getting sad about stuff doesn’t help me or the people around me. 

If you feel sad/weird for me I urge you to do something important and 1) donate blood regularly 2) sign up to be a stem cell/bone marrow donor 3) donate money to Canadian Blood Services or 4) volunteer with Canadian Blood Services. 

Any or all of those things would be so good!

Now that I’ve gone through two transplants I am disappointed by the people I know. I only know of one person who has signed up for the stem cell registry and one person who has given blood one time. So that part is a bummer. By now I would think that I’ve made the point that donations are needed and that it helps so much. 

So go give blood and sign up for the registry. You might be the only match for me or someone else, or you might never be called. Without a match, I might die. And that would honestly be such a bummer for me. 

So stop being a pansy and go do it. 

https://blood.ca/en

[stemcellsarecute]

Updates Etc

Hello!

If anyone is concerned, I am still very much alive. The summer was nice and I have moved to Kamloops, BC. My family is all in and around this place so it is very nice for me to be here. 

I am still dealing with fatigue, self esteem issues (mostly revolving around having weird hair) and occasionally brain fog. It is difficult but it is mostly good, so I am happy. 

My hair has taken on a life of its own. It is very very curly. I am trying to come to terms with my new appearance daily. It really is like looking at a stranger though, even still. It is sometimes very hard. But mostly, I forget that I even have a face and I’m not too concerned with it. 

Hair grows.

I’ve started seeing my new medical team at the Vancouver General Hospital. It is very large and very nice. The staff are, of course, very nice as well. 

University is going well, though I am only doing it online still. I can’t wait to attend campus! I’m excited to meet people here.

I hope everyone is well. Happy first few days of fall!

[stemcellsarecute]

I miss being pretty

I miss doing my hair. And looking nice. And not having rashes. And feeling like I look nice. And fitting into my clothes. And having the energy to go out and having places to go to and having friends and coworkers and schoolmates. I miss not being scared of dying all the time. 

I don’t even look like me anymore. 

[stemcellsarecute]

(via https://www.youtube.com/watch?v=dMOxgjuytmU)

[stemcellsarecute]

OUT WITH THE OLD PICC LINE

So, I have nothing but great news to report today!

COUNTS

HGB: 97

PLT: 220

WBC: within normal range (sorry I don’t have an actual number today)

My doctor said he is pleased with this progress after taking me off the cyclosporine 2 weeks ago. The MAHA was likely due to the cyclosporine and things are actually looking up today. I am to start taking less of the prednisone too, which is excellent!

Here is my current med list:

Valtrex/Valacyclovir : 4g daily

Prednisone : 40mg daily

Magnesium : 500mg daily

Hydroxine/benzo’s as needed for the itch.

As for news on the rash, I don’t really have any.  The dermatologist appointment went well and the specialist thought it was likely a drug rash to penicillin or dapsone (two drugs I have been taking daily to reduce risks of pneumonia).  I have been off of those drugs now and seem to be doing alright. Though I am still red and itchy, the rash seems to be running its course. My neck, back, stomach and arms, which were all blotchy messes at some point, are all becoming smooth again. The old skin has begun to flake and it’s like I am molting into a whole new me.  Sleeping has been very difficult, being this itchy, however I have been taking a lot of allergy medications, as prescribed, to try to make myself unconscious for the allotted 8 hours every night.

A wonderful thing that happened today was getting my PICC line taken out. I have had this one for about 3 months (ish) and it was finally pulled today. I am sad to see it go, but I am also not sad at all. I am not allowed to shower for another 12 hours, but when I can it will be a glorious time.

And on the non-medical home front, Fry starts dog school today! They (Fry and my mom) are currently at his first lesson as we speak. I am so proud of my little family.  Also, a few days ago I finished listening to this story A House in the Sky by Amanda Lindhout. It was a very powerful read and I highly recommend it. Reading it has made me feel more gratitude for all the little things I do have power over.

I hope you are all having a wonderful day.

[stemcellsarecute]

Really random, but when is your art show at U of C, or has it happened already? I live in Calgary and also had aplastic anemia (6 months post transplant) and would love to go check your work out :)

Hello! 

Were you at the Tom Baker on unit 57 the same time I was? If so, I think I heard about you! The show is already done actually but if you would like to see a picture I have one on my facebook art page called Nudieonions Art. I tried to upload it to here but every time I’ve tried the site doesn’t want to upload it. 

You can message me on my art page too! I would love to meet another one in the AA club :)

Happy Trails

[stemcellsarecute]

Sooo I have this microscope and this piece of skin flaked off my face...so I took some pictures. Here you go! Now we can all be grossed out together, instead of just me!! :)

[stemcellsarecute]

Here is the link to find out more about MAHA

[stemcellsarecute]

Out of the Frying Pan With a Mad Rash

2 Thursdays ago I saw Dr D and my medical entourage. They did some tests and I am apparently making enough red blood cells, but they are dying right away. This is called  microangiopathic hemolytic anemia (MAHA for short). I will posts a link to the wiki page afterwards in case you are too lazy to google it yourself. Anyways, this suspicion of MAHA caused Dr D to take my off of cyclosporine, my primary immunosuppressant that has been preventing any sort of graph vs host disease. Apparently the cyclosporine can cause this MAHA, so they wanted to take me off of it completely (cold turkey, so going from around 200 mg a day for 6 months to nothing).

I didn’t think this was a good idea, but I’m not the medical professional now, am I. Anyways, that same day I went to spend a week at a friends in Medicine Hat, and that night developed a mad scalp itch. A few days later my face turned into a bad rash and my body followed suit. In the meantime though, I had a great time seeing my friends. I learned how to play chess, I enjoyed the quiet of a smaller city, I drew pictures, and I visited the swamp that is Echo Dale. 

I came home on the following Tuesday as planned and went for blood work on Wednesday. I showed the nurse my rash but she seemed to think nothing of it. That night I got quite ill and threw up for the first time in 3 years. 

Anyways, the next day I saw Dr D and he seemed rushed and not to think much of my rash. He thinks my scalp and face itch and rash are a fungus and prescribed me some shampoo and cream (main ingredient : ketoconazole). For the worsening rash on my body he prescribed me a Urea cream and referred me to a dermatologist the coming Monday. 

The rash only seemed to get worse with the cream and on Friday I called the on call oncologist. He told me to take antihistamines and to come to unit 57 B. He wasn’t too sure what it was, but in case it was graph vs host disease he prescribed me Prednisone (immuno suppressant steroid) and hydroxine (another more powerful antihistamine). 

Since getting on the Prednisone and hydroxine, the itch seems to have died down, which I’m not sure if it is just placebo or what. Anyways, for the last 2 weeks I have been getting horrible sleeps due to itchiness and can’t (still) make it through the night without a concoction of antihistamines and ice packs. It is one of my least favourite things I have ever experienced. I can’t look at any part of my body without seeing tiny red dots. My face, scalp and hands are scaly. My face is swollen and red. When it comes to human health, skin rashes, bruises, cuts, etc, I am quite squeamish, so this is not fun in the slightest. 

I can’t wait to see the dermatologist on Monday, you have no idea. 

[stemcellsarecute]

6 months and some out

I’ve reached 6 months!

So lately not much has been happening. I have been dealing a lot with loneliness and frustration but I think that is par for the course. 

Medically, I am doing alright. I haven’t had any more problems with CMV so far, which is really cool. I’ve still got my PICC line in, which is less cool but I will live. My counts are a bit on the low end, but they are stable and hanging in there. I have received a few hemoglobin transfusions in the last few weeks, but everything else seems alright. The only thing I have to really worry about now is the sun, because my one medication can increase my chances of getting skin cancer. And I still have to worry about sick people of course.

Another new development is a rash of tiny bumps on my chest and backs, which I have been treating with a low dose steroid cream as prescribed. My doctor said he could do a biopsy, however it would likely be inconclusive. It might be mild graph vs host disease, or it might be from medication, but either way the cream is helping.

Also, there are a lot of ducklings on the pond right now, which is very special. Oh! And that art piece I made will be featured in another show! It will be in the art show for OneWalk to conquer cancer, for the healing arts program.So if anyone is in Calgary here are the deets:

Shaw Millennium Park/Saturday June 25th

I’m not sure what time it is, but I’m sure if you go there someone will be there. It is apparently a big event with lots of participants. 

Happy Trails!

Bailey

[stemcellsarecute]

Compassion Art Show

Today I had my weekly appointment at the BMT clinic. I saw Dr. Brown and asked my regular list of things. Apparently the stomach pain I had been experiencing was probably from the Valtrex so this week I get to decrease the dose. Which is nice because I’m tired of having a grumbly stomach. 

My art piece I was talking about got into the show! So I am going on Sunday, even if I have to wear a mask. This is my first art show so I am very excited. I have to post pictures still. I’ll get there. 

It rained for the entire long weekend and it was wonderful. It is raining again today, so I plan to walk and enjoy it before I’m off to Okotoks for my friends high school graduation :) HAPPY GRADUATION KENNEDY!

COUNTS

HGB 82 (not good-I’m going to get 2 units of blood tomorrow. It’s likely low from the Valtrex)

PLT 171 (normal, up from last week, good)

WBC 5.5 (normal, up from last week, good, yay! Highest they’ve been yet)

neuts 2.0 (finally in the normal range! This is the highest they’ve been too)

[stemcellsarecute]

Nevermind Kamloops

After I got home from a walk yesterday I was getting really horrible stomach pains so I went down for a rest. And then it got worse. And worse and I had to lay down and couldn’t eat for the rest of the day. So we are going in this morning for my blood transfusion. And we’ll see what happens.