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!