Light The Night

It's time to 'Light The Night' again!

My family and I are once again walking in the Light The Night Walk to raise money for the Leukemia & Lymphoma Society of Canada. 

Every 29 minutes someone is diagnosed with blood cancer.
Every 76 minutes someone dies of blood cancer.

I have been one of the lucky ones who has survived. I am walking in honour of those who have lost their battle and so that more people may be as fortunate as I have. Please sponsor me and help save a life.

The Battle Continues

It's been a long time since I've been online and there have been a lot of ups and downs since then. Over the winter I was really sick. I spent my 30th birthday walking with a cane if I was walking at all. After several weeks of physiotherapy, I regained the strength to stand up and walk on my own again. My shortness of breath and high blood pressure still remain unexplained but were able to be controlled and have since gone back to normal.

Spring brought new hope and a spring in my step. I was feeling better and wedding plans were in full swing. I got two new nieces (both on the same day!) who are both beautiful and perfect. My amazing family and friends threw me a beautiful bridal shower and I had the time of my life at my bachlorette party. I had more fun than I had since before I got sick.

I had an amazing summer filled with rest and relaxation (and avoiding getting sick at all costs) which was capped off by marrying the most loving and supportive man I have ever met. We enjoyed an exciting honeymoon in Napa Valley and San Francisco (my doctors didn't want me going anywhere outside of North America) and life is now back to normal.

I feel so blessed to have survived everything I have been through and come out the other side with the strength and determination to continue living my life to the fullest. Thank you to everyone who has been following my journey and supporting me from day one.

Happy Cancer-Versary

It's been a year today since I was diagnosed. As I reflect back it's crazy to think how much has happened in the last 365 days. A year ago today, I didn't think I'd still be here to be writing this.

Physically I can't believe what I have been through and how much I have taken on. When I look back at my blog posts over the last year I realize that I have actually blocked out some of the things I have been through. Although most of major physical pain was short term I have taken on more than I ever thought I would be able to handle. From the bone marrow aspirations to the nosebleeds, scalp pain when my hair fell out, mouth ulcers, chemo burning my arms and mouth, infections, nausea/vomiting, allergic reactions, skin problems, headaches, joint pain and now chest pain and shortness of breath. My body has taken on more than I ever thought it could.

On top of the painful physical complications I have had, there's the visual ones. It's no secret that my looks have changed significantly. And while I am of course just grateful to still be alive, it's not easy to look at yourself in the mirror and not recognize the person that you see.

Emotionally I can say I have changed a lot too. Things that I thought were important a year ago I have realized don't matter at all. I have also recognized that I need to live my life as if our time here on this earth with the people we love is limited - because it is. That's not to say I'm not still planning for the future, but I am definitely more focused on my present and what matters now and not just looking long term.

I have lost friends and gained friends. I have learned how to see who really cares and will truly be there for me when it counts. To those of you who have been loving and supporting me through this - you know who you are - thank you. I can't thank you enough. I could never have come through this with as much strength as I have without the love and support you have provided me.

They say you never know how strong you are until you have to use that strength. I can honestly say this is true. I never thought I would have been able to go through what I have in the last year, but here I am. I still have a long way to go but I'm not giving up any time soon.

medical update this week

I had another clinic appointment on Tuesday this week and 13 hours in emerg yesterday. I've got lots to update, unfortunately nothing very helpful at all.

The biggest issue discussed on Tuesday was my blood pressure. It has been high lately and I am convinced that it is the reason I have been having the fatigue an shortness of breath, however my doctor does not agree. He has been pushing the issue of checking my lungs. Before this last appointment, I had 3 tests done, but the doc only had the results of the CT scan of my lungs. The good news is that that was clear. The pulmonary function test and endoscopy results were not back yet. The doctor and I are on the same page about the high blood pressure being caused by one (or many) of the meds that I'm on, however he explained why I'm on everything and unfortunately the only option at this point was to put me on a blood pressure medication to try to lower it as I cannot come off any of the meds I'm currently on at this point. While I'm not happy about having to go on more medication instead of less, hopefully this will help me feel better in the meantime.

Another issue that came up on Tuesday was that my platelets have dropped. They are not low enough to require a transfusion and my other (red/white blood cell) counts were fine. The doctor had no idea what could be causing this, but is going to monitor it and if necessary will check my bone marrow again to see if we can get some answers. The appointment on Tuesday was left with me coming back again next week and getting a referral to a respirologist for the shortness of breath and getting an echocardiogram (heart ultrasound).

Wednesday morning just before 2am I woke up having chest pain. By 2:30 it had not gotten better, so Kendall and I went to the emergency room. I got a bed pretty quickly and they hooked me up to a heart monitor, checked my vitals and did an EKG. I saw the emerg doc around 4am and he ordered a chest xray which came back clear and said he would page hematology for them to decide if I should be admitted or if they wanted to order any other tests or leave it up to my transplant doc on Tuesday. A few hours later, we found out that there was no hematologist on call that night and we would have to wait until after one came in at 8am. Sometime around 10am (I think?) a respirology resident came to see me. I was then sent to nuclear medicine to test for a pulmonary embolism. The good news is that test came back negative and the respirologist was able to get the results from last week's pulmonary function test. Everything is clear in my lungs - no infections or GVHD showing up at all. The bad news is that we still don't have any answers about the chest pain, fatigue or shortness of breath.

I never did get to see a hematologist in the 13 hours we were in emerg and we came home and crashed after being there so long on only 2 hours of sleep. I still believe this is connected to the high blood pressure and am going to have to wait patiently for the next test in a couple of weeks. Next clinic appointment is next week, so there may or may not be something to update then.

It's been a rough couple of weeks for me. The shortness of breath seems to be getting worse every day. I've had all of the tests done that my doctor ordered at my last appointment, so hopefully when I have my clinic appointment tomorrow he will have some answers for me. It has come to the point where I cannot even sleep in my own bed because I can't climb the stairs. Walking more than about 10 steps causes me to get winded, shaky and tired and even standing for more than a few minutes is exhausting. 

The tests I had done last week were checking my lungs, however my blood pressure has been extremely high and I'm pretty sure the problem is going to turn out to be connected to my heart and blood pressure and not my lungs. I guess I will find out more tomorrow.

In other news, the joint pain still comes and goes but when it comes it's unbearable. This morning I woke up feeling like I've been stabbed in the knee.

More updates later this week if/when I get some answers... Wish me luck.

Photo Update

Ok... So maybe it seems vain. I know I shouldn't be focusing on this and I am honestly just glad to be alive. 11 months ago, I didn't think I'd be here right now, so I guess this may seem petty, but it's getting really difficult to look in the mirror every day and not recognize myself.

Because of the medications I am on and what I have been through over the last year, I have lost my hair twice which still has not grown back, I have a hunchback, I have extra fat deposits in my face and neck, I am growing crazy amounts of body and facial hair, can't seem to lose any weight that I've put on and now have had to start wearing my glasses most of the time. When can I just be me again???

I year ago...

Spring...

Fall...

Now...

Breakfast

In case anyone is interested... This is what my breakfast looks like every morning...

The count is 17... YUMMY!

Tests, tests and more tests

At my last appointment my doctor ordered three more tests to be done. Two were for the shortness of breath and he said he wanted those done right away and he said we'd do another endoscopy to see if we can finally figure out what's been going on with my throat.

Well the least urgent of the tests was done yesterday. I have now had my third endoscopy since my transplant, so hopefully they will have found something conclusive this time. I think they finally found the right amount of sedation to use on me as well... I was pretty much out for the procedure, but not completely stupid after like last time. The worst part of the whole thing was how late in the day it was scheduled because I couldn't eat after midnight the night before... And anyone who knows me knows I love food.

My next test will be a CT Scan this Saturday at 7am. Not too excited about the time, but I'm likely the first appointment, so at least I should be in and out pretty quickly. This is one of the two tests my doctor ordered to try to figure out why I've been so short of breath.

The third and final test he wanted done right away was a pulmonary function test. Since I haven't heard anything about when this test was scheduled for yet, I called the clinic today to find out what was going on. The nurse tells me that the appointment is booked... for June 2. Somehow, I don't think waiting 6 months for a test when I can't walk up a flight of stairs without totally losing my breath is acceptable. Anyway, I have left a message for my clinic nurse to try to straighten that out. Hopefully I'll be able to get that done before my clinic appointment on Tuesday.

Clinic Update

Well, it's been four weeks since my last doctor's appointment, so it was a long and eventful day at the clinic today. I showed up an hour early for my appointment hoping to get in a little early... No dice. The doc was running about 2 hours behind. Luckily, because it has been so long since my last appointment and I had a long list of things I wanted to discuss with him, he did take his time with me and we went over a lot of things.

My biggest issue lately has been shortness of breath. I feel like if I walk 10 feet I am going to pass out. Since this is new and has been getting worse over the last couple of weeks my doctor is really concerned about it and I will have to have some tests run over the next couple of weeks to see if they can find out why this his happening. Until then, I guess I just need to try to take it easy and not push myself too hard.

I've also had a sore mouth and throat lately. This has made eating extremely painful. The roof of my mouth has ulcers on it which my doctor believes are from a virus, so hopefully the prescription he gave me will take care of that. My throat has been consistently sore since the transplant, but is now worse than ever. This means yet another test. I will have to see the GI doctor for the 3rd time since the transplant to see if they can finally figure out what is causing the pain.

And finally, I have had some severe joint pain lately. No idea what could be causing this. I guess I just have to suck it up for now and hope it doesn't get any worse. If it does, we'll deal with it then.

So I guess, medically speaking, I'm a mess right now and things aren't going as well as we'd hoped... But I'm taking one day at a time and so far nothing has been more than I can manage.

Things Not to Say to a Cancer Patient...

I try to be gracious and understanding to everyone because I know cancer is an uncomfortable topic for most people and it can be hard to know what to say... but I'd also like to get a few things off my chest.

In response to some of the things I have heard over the last year:

1. I know someone who had that cancer and they're fine (or they died).
Great. Did you know that cancer affects everyone differently? Please do not lump me in with every cancer patient you've ever heard of. I am not them. My cancer is not theirs.

2. There's a cure for cancer - they just won't give it out because the pharmaceutical companies make too much money off of treatment.
Gee thanks. While I am hanging onto my life by a thread, you think that there's some magical cure that's being held over my head that I can't have. Let's see how you would feel if I said that to you in the same situation.

3. Treating cancer makes it worse than leaving it alone.
Are you an oncologist? If not, please keep this opinion to yourself. This relates back to #1. Just because you know someone who had treatment, surgery, etc. and their cancer got worse, came back, etc. does not mean mine will. I have a team of specialists who know and understand what my options are and I would prefer to make my decisions with them. Thanks.

4. Did your transplant work?
Yes it worked. If it did not, I would be dead. That does not mean that I am all better now. I have not had a whole host of complications and may continue to have complications for the rest of my life and the cancer could always come back again.

5. But you don't have cancer anymore.
Not exactly. I am in remission. I have had what seems (so far) to be a successful round of treatments. This does not mean that I will not be looking over my shoulder for the next year, 2 years, 5 years... It does not mean that I am 'all better now, and it doesn't matter how long the doctors give as a guideline. Once you have had cancer you will be looking over your shoulder for the rest of your life.

Please understand that I am not trying to offend anyone by this, only to make a point that you should always consider what you are saying and who your audience is before it is said. I have been so overwhelmed by the love and support I have received from friends, family and total strangers over the last 11 months and I couldn't have made it this far without knowing how many people care. Thank you all so much.

Happy New Year!

Ok, I know it's been a while, but fortunately that's been because there hasn't been a whole lot to update lately. I'm beyond the 100 day critical period and while I'm not out of the woods yet, and still having complications there has not been to much excitement to report.

Since I last wrote, I had been having stomach problems and they were concerned about GVHD again. Well the biopsy didn't show any GVHD which means that the doctors have no clue why I was randomly vomiting, but increasing my Prednisone again has stopped the problem. It has since been decreased a little, but they're weaning me off of it much more slowly this time. I'm not happy about the length of time they expect me to continue to have to take the steroids because of the unpleasant side effects, so hopefully the new drug they're trying me on will help get me off the Prednisone sooner.

I have also been having a lot of severe headaches lately. Not sure why and waiting for an appointment with a neurologist, but that will be a long time coming. Luckily, I have nowhere I have to be, so if I'm stuck in bed sick with a headache all day I have a four legged snuggle buddy to keep me company.

The only only other issue I've been dealing with is my inflamed liver. I know... I should really quit all my drinking... (anyone who knows how may drinks I've had since my transplant knows that's a big joke). Again, no one has a clue why my liver is inflamed, but they've ruled out anything serious and say it's most likely either a virus or one of the (many) medications I'm on... Just one more reason that I want to get off the steroids sooner than later. Although my doctor doesn't seem too concerned about my liver it's extremely uncomfortable and feels like something is pushing it's way through my ribs every evening.

That's it for the health issues. Other than that, I have been staying in as much as possible trying to avoid all of the sick people in the outside world. I enjoyed a very busy but fun Christmas and New Years with friends and family and hope you all out there had a wonderful holiday season as well. I plan to be online a bit more now that the craziness of the holidays is all over... Until next time...

Days 98-100

Well, I made it to day 100, but not without difficulty.

Tuesday, I had my regular clinic appointment and they kept me in the hospital for 2 days.

Lately, I have been having more bad days than good. Most of the bad days I have just been tired and overall just not feeling well, but I have had a few days where I have been really sick and vomiting. Tuesday was one of these days. When my doctor saw me on Tuesday and I had been sick to my stomach all morning he decided that he needed to run some tests. They started with an ECG and a chest x-ray which were both okay. Then I spent the rest of the day waiting around in the cancer clinic for there to be a room available upstairs for me.

The next morning they sent me to endoscopy to take a look in my stomach and do some biopsies to see if they can find out why I've been getting sick. I've had this procedure before and while they said they sedated me last time, I was fully aware of what was going on and extremely uncomfortable. I told the doctor this and he said he'd be generous with the sedatives this time. Well he wasn't lying. I have no recollection of the next two hours of my life, but I've been told I was quite entertaining.

Kendall sweet talked the doctor into letting me out of the hospital the next day since I had gone two days without getting sick and was eating and drinking well, so I am back home now. They hope to have my biopsy results by Tuesday when I go back to clinic (but I'm not holding my breath), however the theory is that I STILL have graft vs host disease. They expected it should be gone and had been weaning me off the Prednisone, but as the dose got lower the symptoms were getting worse... So this means that I am back on a high dose of Prednisone and will most likely have to stay on it for at least another six months... Along with the hunchback, puffiness and extra chins it has given me.  But I'm not dead yet!

Light the Night

I participated in the Light the Night walk last Saturday accompanied by my family and it was a great night! Thanks to the generous donations we received our team raised over $6000 for the Leukemia and Lymphoma Society of Canada and were the 6th highest fundraising team in London!

Thank you so much to everyone who sponsored me. If you still wanted to contribute, the online site is still open. You can click HERE to go to my personal page to sponsor me for the walk.

ONLY 2 DAYS LEFT!!!

Please help by sponsoring me in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.

On October 20th I will be walking with my family to benefit all 90,000 people affected by blood cancers in Canada.  All those that will be diagnosed every 34 minutes, And those, who every 72 minutes, will die.

Click here to sponsor me in my walk.  Every little bit helps.

Thank you.

Day 78

Another doctor's appointment yesterday, which means another day spent in a hospital waiting room. The good news this week is that my CMV level is negative which means the virus has gone dormant again and I don't have to have my IV anymore. So, next week the doctor is going to decide if I can have my hickman line taken out (attempt #2).

Although I have had the dose of my medications cut back, due to the length of time I have been on some of them the side effects are getting worse.  The prednisone (steroid) gave me "moon face" a couple of months ago, but now I've added "buffalo hump" to the list. Prednisone actually redistributes fat in your body to cause a round puffy face and a hunchback which I now have both of. Very cute. Another one of my meds, cyclosporine (immuno-suppressant) is now causing hair to grow on my face. Even cuter. In addition to all of this, it's been almost 3 months since the chemo stopped and I am still completely bald. So the only hair actually growing on my body is on my cheeks.

Only 17 days left to sponsor me for the Light the Night Walk... Please click here to sponsor me!

Day 70

I just got home from clinic and it was the quickest appointment we've had yet!  It probably helped that we were there an hour early too. 
Anyway, the good news is that the doctor is lowering my dose of Prednisone (steroid).  Once I'm completely off that my face should go back to normal which I'm really looking forward to.  Right now I have 'moon face' caused by the Prednisone redistributing fat in my body to my cheeks and jowls.
The bad news is that the IV I was supposed to be on for 2 weeks, then was extended to 4 is now going to continue for another 2 weeks.  I still have the virus active in my system so I have to continue the medication longer than expected.
Kendall got more attention than I did at clinic today though.  He's been sick for the last few days, so they were more concerned with him and what he has to make sure I don't catch it.  He has a low grade fever and has been back and forth with sweating and chills.  He saw his family doctor who told him it was just some kind of virus and that I should be fine.  My doctor took it a little more seriously and did a test on him to confirm exactly what kind of virus it is.  They did a nasal swab that they told Kendall 'wasn't pleasant'.  The 'swab' they used was long and thin and went in through a nostril all the way down to his throat.  The look on his face when it went all the way down was hilarious!  The things we do for love.  So hopefully by tomorrow we'll know what he has and either be able to treat it or they'll give me something that will prevent me from getting it too.
That's all the updates we have for today.  Back to clinic next week and hopefully nothing eventful happens between now and then.

September is Blood Cancer Awareness Month

Please help by sponsoring me in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.

On October 20th I will be walking with my family to benefit all 90,000 people affected by blood cancers in Canada.  All those that will be diagnosed every 34 minutes, And those, who every 72 minutes, will die.

Click here to sponsor me in my walk.  Every little bit helps.

Thank you. 

                                                         

Day 59

Well, it's been an eventful couple of weeks... When I last posted I had great news about not needing Winston and getting my hickman line out.  Change of plans. 

Kendall and I had a nice Labour Day weekend planned.  Friday in Grand Bend with his parents, then Saturday in Goderich with my family.  While we were in Grand Bend on Friday I got a call from my doctor.  Apparantly I have CMV.  This is a virus that most of us have in our systems living dormant, however in people with comprimised immune systems it can cause serious illness.  My doctor wanted me to come home to start treatment right away.  So, first thing Saturday morning I was back at the hospital to get my first dose of medication.  Luckily, I hadn't gotten my hickman line out yet, so I'm not getting poked with needles all the time and after they made sure at the hospital that I didn't have any reactions to the medication it can be administered through IV at home.  What was supposed to be a two week course of meds though is now looking like it will be four weeks.

Other than that things are moving along as expected.  Hopefully there won't be any more major complications but I'm just taking it one day at a time.

Day 44

I'm awake early again, as I have been every day lately.  Not sure where this has come from as I was never a morning person, and it's certainly not from Chelsea!  I'm glad to be up early today though to watch Robin Roberts final show on GMA before her stem cell transplant from her sister.  She looks amazing and she has brought so much awareness and inspired so many people to volunteer as donors.  Good luck Robin!

I got some good news at my clinic appointment this week... Winston is out of my life!  I no longer have to be tied to an IV every day at home.  My skin is getting a lot better.  It's still not cleared up, but is finally starting to go away (after almost 5 weeks).  And thank you to my doctor for quickly getting the government to approve coverage for $4000 worth of drugs that I needed.

My energy level is still incredibly low.  I slept pretty much all day yesterday.  It does go up and down and I've been able to get out of the house a little, but the ups still aren't very high at all.

I'm almost halfway to the 100 day mark!

Light the Night Walk

On Saturday, October 20 my family and I will be walking in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.

Please click here to view our team page and sponsor us for the event.

http://my.e2rm.com/TeamPage.aspx?teamID=338321&langPref=en-CA&Referrer=http%3A%2F%2Fwww.facebook.com%2F

http://youtu.be/4g-XsCTYY8E