Wednesday, January 30, 2013



Okay, it’s fair to say that cancer sucks. It robs you of your energy, your hair, your freedom to travel at will, your ability to be around small children if you’re receiving chemotherapy, your dignity, your hopes and dreams and now – your financial comfort. Even those with insurance find themselves running out of coverage if their treatment progresses. People have had to sell their homes and other valuables just to make ends meet.

My insurance is currently covering all treatment so far, but due to my pain level, I was forced to go on disability. I haven’t driven in about 10 months and I am on pain meds which makes driving unsafe. My husband and I have always made the same income, so for me to lose mine for disability is devastating to us. Barely making ends meet at the end of every month, we’ve relied on friends providing gift certificates to food stores so that I can stay on a reasonably healthy diet while on chemotherapy, care packages with goodies inside and cheerful cards to keep my spirits up. My son and daughter are also jumping in there to help. My daughter lives in Maui and has flown out here twice over the past few months to help out with chores around the house like cleaning and yard care. The men in the house do okay, but they don’t clean in detail like a woman. These are things that I have been unable to do due to pain. Every time just before she leaves, she fills our refrigerator with wholesome organic foods from local health food stores. Back in August, she also organized a benefit in Maui with the local restaurants she works for along with some local artists and shop owner. Together, with her hard work and marketing, they raised close to $6K. This helped to catch up on bills.

My son and his girlfriend jumped in during the holidays and did all of the cooking for both Thanksgiving and Christmas so I can get the rest I need and recover from chemotherapy side effects. At Christmas, my son did all of my shopping for me since I had to stay away from public places. Chemotherapy destroys your immune system and the common cold could end up putting me in the hospital. I am so proud of my children. They are my legacy and I know that I am leaving behind two strong compassionate people with integrity to carry on.

Recently, my son and his girlfriend have moved into our apartment downstairs. This is a win win situation as they get an apartment at a discounted price with no credit checks and deposit and we get a little extra income each month to help with bills.

I have learned through this ordeal, that I have many friends out there. They do what they can within the limits of their own finances and I’m sure, at times, their assistance has put a financial burden on them also. They send food gift cards, care packages of goodies, gift cards for organic foods, healing mushrooms and other healing herbs, and cases of Ensure for my weight gain project, cheerful cards on a routine bases, emails, text messages and voicemail messages to show they care. They are true friends and I am forever grateful for having known them. They are angels in disguise.

My concern over our finances and my husband’s stress level led me to create a business that I can literally run from bed. It’s still in the beginning stages, but moving forward daily. It’s a cancer related, web based business and a service that is very close to my heart. I don’t want to say too much at this point, but hopefully it will take off and provide my family with extra income now and after I’m gone if they choose to continue to run it.  I will keep everyone posted on my business venture. For now, let me tell you that it’s called:  “The Cancer Kickin Bag Lady”.

My Stage IV Lifestyle:

I want you to know that this is unusual for me. I don’t like to dwell on my future or the things that I may be missing, but sometimes you just have to get them off your chest. Anyway, there’s always hope and I can always be the exception to the rule of how long you live being treated for metastic breast cancer. Even though the continuous treatment doesn’t fill me with joy and enthusiasm, the fact that I’m still alive does.

At the moment I am currently on my 6th round of chemotherapy. I am on Taxol and Herceptin for HER2+ breast cancer. When it first started, I would have 3 bad days and 4 good days after my treatment. At this point, I have 6 bad days and 1 good day which just happens to be my treatment day. Then the cycle starts all over again. I have lost my hair and almost 20 lbs which I cannot seem to be able to gain back due to nausea and vomiting. I wake up at around 7:00 am and take my first pain pill. Then go back to sleep for 4 hours until the pain wakes me up at 11:00 am when my next pill is due. I spend 95% of my time in bed on the computer due to lack of energy. Showering is difficult at best. Basically, everything most people take for granted are not easily incorporated into my daily routine. The pain in my spine stops me from getting around the house and doing normal things like cooking family dinners or even light housework.

My husband does the shopping and most of the cooking is shared between my husband and my son. My husband and/or my son take me to my doctor appointments as I haven’t been able to drive in quite a while. I just don’t feel safe behind the wheel anymore during my chemo treatments.

Going shopping or just window shopping or going out to eat is limited due to my white blood cell count being so low. Chemotherapy tends to lower your immunity and leaves you open to infection which can very easily turn life threatening. For example, on my daughter’s first visit she brought my grandson Zeke with her. Zeke is 4 years old and as cute as a button. He was at the very end of a mild cold that he had had for about a month before their visit. No one in the house caught his cold except for me. I woke up on the 3rd day of their visit with a 105 fever. I went to the hospital where they diagnosed me with pneumonia. My Oncologist’s orders from then on were to not go near any child under 12 years old.  There is also a new fear that my Oncologist put in my mind – salad. Can you believe it? I love salad. I can only eat it if I wash and prepare it myself. So, there will be no restaurant salads or ones prepared by others for me. It’s the raw food issue and bacteria.

So anyway, when I am able to walk around the house a little, I go from the bed to the couch, back to the bed. The computer is my lifeline to the outside world and sometimes I lack the energy for even that.

Chemotherapy has many side effects such as always being cold. Even going into the refrigerator for something to eat or drink is a challenge. There’s tingling in my hands and feet to the point where I can’t walk sometimes. It’s like walking on feet that have gone to sleep. The constant nausea is a real challenge and then there’s the fact that all food tastes different to me. Unfortunately, the taste of food doesn’t change for the better. There’s also shortness of breath, mouth and throat sores. Sometimes the shortness of breath is so bad that I can’t talk. Chemo brain has set in. It mimics mild dementia with short term memory loss. I do memory exercises to ward this off as long as I can and I’m also told that it’s temporary. At least now I have an excuse for forgetting things. That’s a cancer card I use a lot lately, but unfortunately, it’s true.

All of the above, to different degrees, will be my life for the long haul. Stage IV metastic breast cancer is not curable. It is treatable with different chemotherapies, but the treatment is constant and non-stop. Each chemotherapy drug will have different side effects and challenges to the body; some better than others, until there is no more treatment available. Each treatment has a positive effect for a limited amount of time. No one therapy works for years and years. When one stops, they start another one until there isn’t anything left to try. At that point there are always clinical trials, and oh yes, hope, a healthy lifestyle and the sheer will to live. Current statistics are that the average life expectancy after diagnosis of metastic cancer is 3 to 10 years. This is not predictable and there’s no way to tell how long you have, or at least I don’t think there is at the time of this writing. Each person’s cancer metastases’ differently and at different rates. It may be as simple as your insurance company’s willingness to continue paying for treatment. Who knows?

Well there it is – my venting. Like I said, I don’t like to do this. It’s not healing. But to tell you the truth – sometimes it’s just necessary. Here’s counting on at least 10 more years and being the longest living Stage IV Cancer Kicker that this disease ever came up against.  All I can say for now is….CANCER CAN KISS MY ASS!!!!!!!!!!!!!

Thanks for indulging me. I love you all.