Live Your Truth, the State I’m In & Good Things:

I realize my blogs are a lot of bitch right now, but I firmly believe you gotta live your truth. And my written truth is always the state I’m in! I’ve noticed there are a lot of bloggers who only write when they have something good or uplifting to share about cancer and their experiences. Ill notice a gap in their writing and then a comeback note that says “sorry I didn’t write for so long, I was feeling really down”; I think this is a real injustice to others.

It’s clear that many have a shared experience of feeling down, angry or lost for a period of time during this process, but many are reluctant to share it. I don’t need a dirty laundry list, but if there’s someone else out there who’s going through this process who wants to share – share! Share the good and the bad, that’s the biggest service you can do for another “patient”. No one wants to be alone in this experience, especially in there problems.

However in the last few months I have neglected to post my “good things”…so…

The one thing (or being) that always makes me happy is my cat. This little old man is especially happy to have me back in my parent’s home at his beck and call. He loves the day after chemo because he gets to stay in bed all day and cuddle, and I love the company! At 15 he is starting to experience some health problems so I’m just so happy to be near him during this time. Pets are such a comfort and a wealth of unconditional love… a sick person must have!

Over the past month I have taken over the household cooking and am learning to prepare all these meals from my clean eating and cancer-free cookbooks. I used to own take-out menus, not cookbooks! Early on I learned that a clove of garlic was one of the pieces inside the bulb, not the bulb. In the end the stew with several bulbs of garlic in it (instead of cloves) tasted pretty good, but our house stunk, our clothes stunk, my car stunk, my mittens stunk, and the cat stunk like garlic for 2 weeks! Nobody liked the almond cookies (aka. dog biscuits) I made, but man am I having fun… I learned how to use a Cuisinart!

So throughout this experience I have not found god, it hasn’t brought me closer to my family (thus far), I haven’t bought into the “everything happens for a reason” inner peace shit and I have chronic moments of ungratefulness, wounded vanity and all out bitching. When I’m done with that I pet the cat, try to kill my family with my cooking and blog about the state I’m in!

Cancer Cash

Applying for financial assistance is an emotional rollercoaster that one does not really need to be riding during a period of illness or treatment. I just finished with the liaison for OntarioWorks who helps people apply for ODSP, what a great lady! She came out to my house, went over my application and double checked that I was aware of (and accessing) all the resources available to me. At times like this I am pleased with the benefits and assistance available to Canadian’s and breathe a sigh of relief that things are going to be okay.

Two hours ago I was reading an article about a young woman in Windsor who was not eligible for EI or welfare when she became sick with ovarian cancer at 26. She had not put enough time into the workforce for EI, and her family (not her) had money in retirement funds, so “they” were not poor enough to be eligible for welfare. Read: http://www.thestar.com/comment/columnists/article/569272

I know all about this trap of having to moving home because you can’t get enough money from the Govt to support your household bills, yet once you move home not qualifying for enough funds to pay the remaining bills you have because of the household (or family) income they assume you have access too. My family can give me a roof, food and love… that’s it, that’s all.

Between this article and a blog I was reading last night about a 21 year old also not old enough to have contributed into these resources, I’m thanking good this didn’t happen to me at a younger age. I have enough problems trying to get ODSP. And then I get angry all over again. I have applied for so many programs, been rejected, been approved, been given misinformation, been given no information and in general done a lot of leg work for a chicky who’s supposed to be sick.

In the beginning I applied for EI and was told I couldn’t apply for CCP until EI was done and that I had too much savings to apply for ODSP. So I lived off of about ½ of what I needed from the Govt and subsidized the rest from my savings. EI ran out after 15 weeks, I called up and they said I should have applied for CPP in the beginning because it takes 2-3 months to be approved; I could have had both all along! So then I got CPP after EI (again about ½ of what I needed) until the end of my treatment/ now.

Now I have just found out this process will go on longer with more treatment, and I am out of savings – so CPP is not going to be enough anymore. I started the application for ODSP only to be told I could have applied for it when I had savings. Why did I have to deplete my own resources to the point of being at the Govt mercy to get help? If I had been getting what I was entitled to all along I would have been able to use my own funds towards little things I think are important to improve the basic living expenses they provide. Ie. They provide a Kraft dinner diet expense, I top it up to eat organic food and buy supplements. Now Ill have nothing to top up their allotments to cater to my specific needs.

So although I really liked this lady and felt she was helpful, well I felt that way about the people that gave me the mis-info before. You can only hope and trust the person you are assigned to is giving you the right info at the right time, and volunteering things you might not know to ask.

By the way, you hospital social worker won’t offer this up in the beginning (again waiting until your in dire straights and come calling) you don’t need to be paying parking fee’s, they have funds for that. Information I could have used 9 months and $500 in parking receipts ago!

Loose Ends

I was reading back over some of my posts and thought I should provide some updates and wrap up loose ends.

Breathing problems: My last chemo was mid-Dec with the effects of that round felt between Christmas and New Years. This was the worst breathing spell yet, but I stayed calm and mostly immobile for about a week and when the cycle of drugs started to wear off, my breathing improved. Between my ER visit and now I have had numerous lung/breathing tests, scans and appointments regarding the matter. For awhile the Dr’s thought I had systematic fibrosis on my lungs (permanent scaring) from the bleomycin, but thankfully it seems to be temporary (yet sever) swelling from prolonged use of the chemical. I am breathing normally now, but I still notice a… limited air intake (hard to explain) when I workout.

Doc visits: Too many! Mid-January I had my follow-up CT/PET scan, then follow-up consult with my Hematologist and numerous lung and heart dudes.

Test results: My CT shows the mass has stayed shrunken but not gone. Sometimes these masses never go away completely and scar tissue is left, however my PET showed the mass was still active. The Dr. is not keen on radiation due to my lung/heart sensitivity, so in a few months we will look at BMT treatment

Eating and digestion: Much better and fat, fat, fat! I didn’t have too many hang-ups about food during chemo, I was on the “if you make it, Ill eat it diet!” My yoyo bowel problems are gone, thank god Ill never take my ass for granted again! Except now that it’s working again, it wants more real-estate – my ass is huge! I am so hungry all the time, and desperate for sugar. Is it an unbalance, or boredom?

Medications: None baby, none!!! I haven’t stepped into my pharmacy since Dec, and I will suffer a headache all night before I take one single Tylenol. I just need some drug-free time before it all starts again.

Energy: Unbelievable! There comes a point throughout treatment where you’ve been decrepit for so long, and deteriorate more with each treatment that you almost forget what daily energy is because the slowdown was gradual. My breathing and energy improved daily once the effects of the last round wore off. It was amazing, last Nov I couldn’t carry my own laundry to the basement and by Dec I could barely get down the stairs to the kitchen. Mid-January I was up to low key activities for about half a day, and now I could probably work about a 6hour day. My free laundry service has ended!

Ailments: My arms still ache from the damage to my veins but that’s about it. Dry mouth and dry eyes that caused blurred vision is gone. My crazy heart rhythms have returned to normal and lungs are doing what they’re supposed to. My nose still runs constantly; when will that end?

Looks: My hair is still growing, but slower than before. My skin is still dry and rough. Towards the end of treatment my body felt like sandpaper. I’m still scrubbing away and saturating myself in Shea butter but it’s not quite back to normal.

Vacation: I was too sick and tired to go away for Christmas. We finally went last week to Barbados. I think that was best that we waited a few weeks because I was in much better shape to tour and do activities.

Future: Unknown, uncertain! I really just don’t know what to do with myself right now. Physically I am feeling better and the Dr. suggested I could return to work until my next treatment, but I don’t really have a job I can walk in and out of. It would be bad for clients and coworkers to have to leave again in two months. So I’m trying to decide what to do?

Money: Almost outta coin! CPP pays very little and starts after EI times out. I don’t qualify for any EI top-ups and likely not EI disability. For the last 9 months I have been paying bills from my savings, as CPP only provides about half of what I need to meet my financial obligations. The savings run out in February, so go back to work right? If I work just a little (p/t), it’s subtracted dollar for dollar from my benefits – no gain. If I work a lot (f/t) I lose my benefits and then have to start the application process all over again when I start up treatment again. I’m trapped… fuck I was supposed to be cancer free by now – I budgeted to be cancer free by now! There is no more money to entertain this cancer nonsense any longer!