Beating the Odds

Well, the doctor’s gave me a 50% chance of still being here if I proceeded with the transplant and I guess all went according to plan because I’m still here!!

I never doubt, I am one of the lucky ones. When I was first diagnosed with MDS and told I would need to get a bone marrow transplant, I started looking on the Internet for other people who went through with the procedure. Other stories did not have as happy of an ending as mine. So if you come across my blog – HAVE HOPE!!!

I am truly blessed to still be here with my family. My life is totally different from what it was before I was diagnosed but I see that as an opportunity to look at what is truly important in life and live each day to the fullest.

I did try return to work but I’m struggling with chronic fatigue. Not everyone has this condition and perhaps in time it will pass for me as well. It may also have been the anxiety and depression that seemed to appear right after I passed my 1 year anniversary. The struggle with “What now?”. It’s like cancer walks into your life and pulls the carpet out from under you. You fall into this deep dark hole and you have to make a decision to stay in that hole or climb back out.

A friend of mine recently discovered she would have to receive chemotherapy treatment.  While we sat and had coffee one day, I reminded her that yes, cancer sucks! It’s ok to be sad and angry and frustrated with life. The question that comes into everyone’s mind – “WHY ME?”  What did I do wrong? Why did this happen to me?

The only control you really have right now is, how are you going to react to your situation.  If you let cancer control you, it’s already won. Or are you going to take control of cancer and face this BS head on.  If this is the end, do you want the last of your days to be in misery? Or living the best damn possible life you can? Wake up each day like it’s going to be your last and don’t let anything stop you.

While some days still suck, and my major accomplishments in life include cooking dinner, trying to keep a clean house and doing laundry… (most days, I still struggle), I’m one of the lucky mom’s that get to attend my daughter’s school functions and take her off the bus every day.  I work on my blog when I have the energy – because I love it, not because I have to. Every day I make a conscience decision to do things because I want to. I’ve learned very quickly to say no so that I have time in life for things that truly matter. You would not believe the number of times I catch myself staring up at the beautiful blue sky and thinking how truly amazing life is.

If you find this blog because you are traveling down the same path I once traveled, have faith and stay strong. It’s going to be a tough battle. Be prepared for change. Keep an open mind because sometimes the best things happen after the biggest storms. It’s all about how you look at your life.

Some Painful Financial Learning Experiences

The past month has been filled with learning. Painful learning. Of the financial sort. Never fun. Just when I should be focused on trying to heal and get better, I’m learning information the hard way. My first words of wisdom? Find yourself a good accountant!

I can not stress this enough. They will help you as you as you muddle your way through what you can and cannot claim.

Now I am not a financial advisor (I also live in Ontario, Canada), so talk to a specialist. As soon as you get sick and you know you’re going to be off for a while, talk to your financial advisor either through your company or the person who sold you your policies. Ask questions. Lots of questions. Find out the following information:

• if you are fortunate enough to work for a company (like I was) that provides short term disability (STD) and long term disability (LTD) fine out who paid for the premiums – you or the company. From what I understand, if you, as the employee, paid for the premiums, you will receive LTD tax free. That means you do NOT need to pay income tax on the funds you will receive each month. If your employer paid for the premiums, you will need to pay the income tax on these funds.
• if you go on LTD, you tend to be accepted into the Canadian Disability Plan (CDP) kinda, like CPP. If you are receiving two sources of taxable incomes, you must pay enough income tax each month for your total monthly income. Usually CDP and LTD will only deduct enough tax for the amount of income they are providing to you. Add the two incomes together, and it pushes you into a higher tax bracket which means you need to pay more taxes.
• Employment Insurance NEVER takes off enough income tax. Never. So take this into account when income tax time comes around and be prepared to pay if you at any point receive employment insurance.

If you need to travel for medical purposes, learn what you need to do in advance so when it comes time to file for income tax purposes, you are prepared. Some things to keep in mind are:

• keeping a copy of each travel grant application you submit as well as the stub that accompanies your grant cheque as you will need this when filing your income tax
• keeping a copy of every single receipt for food, gas, hotel expenses OR keeping a record of all the KMS you travel so you can claim properly at income tax time (this is hard information to come up with when one is not prepared)
• keeping proof that you were out of town for medical purposes to track food expenses
• receipts for food are only accepted for the patient UNLESS the doctor writes a note stating the patient requires someone to accompany them to their appointments than they allow 2 (never more)
• people may submit for “general expenses” for example 55 cents per KMS but you must track your KMS driven, and $51 per person for food. Proof is required the person was out of town for medical purposes.
• credit card monthly statements are not accepted, they must provide original receipts
• you must have a receipt for hotel stays

When it comes time to file for your income taxes, I can not stress enough, get yourself a good accountant!

These are key items I’ve learned along the way. The hard way. Hopefully next year will not be such a painful learning experience.

Also, on a side note – if you receive LTD, there are case workers that review your file. If any any point you do not respond to their requests, you will be cut off.  If you know you will be unavailable due to an upcoming surgery or procedure, keep in touch with them. Tell them. Tell them how long you expect to be out of touch. Tell them the procedure you are about to have so they know. They will leave comments in your file so you do not receive any follow ups during this time and there is an understanding of what is going on in your life.

As sad as this is to say, you are just another claim. A claim they want to close as quickly as possible. If you do not make them aware of your medical situation and you do not respond to their requests, they will assume you no longer require support and end your claim. (they are just an insurance company after all) I’ve heard so many other patients being cut off from their financial support while they were in the hospital because they were not at home to respond to these requests.

Before I went into the hospital for my transplant, I called all the companies providing me with funds to make them fully aware that I will be out of touch for at least the next 4 months. I asked if they required any additional information from my doctors (most said they were happy with what they had on record). A simple phone call goes along way.

 

Day +61 to +100: On goes the battle

I’m happy to announce things are getting better. (easier?)

I was allowed to go home to see my children on the weekends! I’m not sure who was more happy. Me or the kids. Of course by this point I had enough energy to be in the kitchen most nights cooking supper so my son was over the moon thrilled to be eating again. [Continue…]

 

Day +21 to +60 – I’m released!

So I’m a little late on this (if you read the published date) but better late then never, right?

I’ll be honest. These  past few months have been tough. Really tough. Mentally, physically, emotionally… for any strong willed individual who is used to living their life, being active, being free.  I’ll admit this experience broke me. It has scared the shit right out of me. But apparently that’s a healthy thing to admit. [Continue…]

Day +1 to +20

So if you were keeping tabs on my journey, or trying to, you may have noticed I dropped off the face of the planet. There was good reason for that. Today is day +20 and I’m finally starting to be able to use my brain to string a few words together. It’s not that bad, but finding the mental power to write was definitely not in my day to day plans. [Continue…]

The Big Day! – Day 0

I was told I would be tired today. A nurse said it was from the excitement build up. I think it’s from all the drugs they gave me. Starting with anti-rejection medication, and everything else in between, by the time 2:30 came around for my stem cells, I was so out of it, I barely remember it. [Continue…]

Chemo Treatments – Pre Transplant

This is a run down of my week leading up to my transplant. This includes my chemo treatments and everything in between. [Continue…]

What I brought to the hospital

I asked a lot of my lady friends what they thought I should bring with me to the hospital.  The question was more like “If you only had 1 suit case to live out of for 3 months, what would you pack?” but since everyone knew I was going to stay in the hospital, I had some great suggestions on what to bring. This is what I ultimately decided to bring. I’ll update the list with which was handy and what was a waste. [Continue…]

Being Admitted to the Hospital

Well, I’m here. There were a lot of things that caught me off guard when I first arrived so here’s what I experienced so far. [Continue…]

Tests Before the Bone Marrow Transplant

Out of frustration of with the lack of information I found on the Internet and that was provided by my health care provider – more from my lack of asking perhaps and the difficulties I had reaching them as they were quite busy. (Yes, I know, my own fault!) Here is a list of the tests I had to complete to ensure there were no issues with my going ahead with the bone marrow transplant. [Continue…]