depressed a bit today

Hi everyone,

The bills are starting to trickle in, and basically it costs over two thousand per week just for my immune therapy. Over seven thousand per each chemo treatment. The port was about sixteen thousand. I am still in therapy and wonder what the final tally will be. My insurance has a high deductable but eventually caps. What a relief that is. I can't worry about the money, but I do.

I am applying for financial assistance from the Seatte Cancer Care Alliance, I just hope I qualify.

I am bummed because I have the "wrong" cancer. I called the American Cancer Society again the other day to look for financial resources, and of course, none for me. Gobs of stuff if I had lung cancer or breast cancer, and I just thank God that I have none of the above. My cancer cup is full right now.

Here is my opinion: Support services and financial aid should be for all cancer patients, not just those with the loudest marketing genies. I understand that research dollars are generated through fundraising, and fundraising is done by "non-profits" who are married to a particular type of disease. So if you have a rare disease, or a low-profile disease, you are less likely to find support for things like "bills".

So, today I am feeling down. The ACS is sending me a packet, we'll see what they send. In the mean time I wrote a note to Ellen DeGeneres asking her to do a show on Ovarian Cancer. She has low back pain and I wanted to let her know that LPB is a symptom of OC. I know I am sounding paranoid, but that is what OC is about, vague symptoms that if left unattended, can kill you. So maybe she will listen and really have her pain checked out.

I have chemo this week. Not too excited but feel lucky to have it. Love you all.

Denise

as chemo compounds in my body

I thought I'd take a moment to update on my progress. I am starting to get overwhelmed with all the medical appointments. Last week, I went to an appointment every day. Sun, Mon, Tues shot days. Wednesday I met my new primary care doctor who is concerned that I may be getting diabetes, swell. Thursday was chemo day. Friday was physical evaluation day, sigh.

On Friday I had to do a mandatory physical evaluation to see if I qualify for assisted transportation. What a hassle. and waste of taxpayer dollars. The only light there was I was enchanted with the story telling of an 83 year old WWII vet, from New York. He was a sweet elderly man, one leg had been amputated. He told me stories about how he loved the culture of New York, but had lived on a farm. Told me about growing up in the depression era and how he felt so fortunate to have been a clerk during the war. He said he taught soldiers to read and write as well. He helped pass the time, none-the-less. We were both there for our "test".

The reason the back-up transportation is so important is that there may be a day when I need a ride to a doctor or chemo. Mom cannot drive at dusk/dawn/night. My sister does have a family and they have all had the flu for two weeks now. King County has a transportation program, but the approval process is cumbersome and full of red tape. The process of physically going to a hospital, being tested by a physical therapist, and riding back was almost 4 hours. It exhausted me. I just hope I get approved, I'd really use the service if available to me.

Anyway, as far as my health goes, I am definitely feeling the nausea as the chemo schedule continues. I was told that the cumulative effects of chemo are that the side effects intensify as time passes. The chemo drugs linger in your body, and each time you add more chemo, there is more in your system., more to hurt you.

The good news is that my anti-nausea medication works fairly quickly. I am now being screened for diabetes because my blood sugars are running high. I am also noticing an effect called "nystagmus", which is basically my eyes will jerk back and forth super fast for no appearant reason. I just have to manage these little battles as I go.


Because of the new onset of nystagmus and possible diabetes, I am fairly sure I am not going to increase the frequency of my chemo. My doctor told me she was worried I wasn't getting enough chemo. I haven't fully decided yet, but I don't want to do any major additional damage to my body because of the chemo. I need to talk more with her and see what she says. So for now I am going to take my scheduled week off next Thursday, I really need it.

I am interested in any advice someone has to offer about how to live in the future. Assuming I heal from cancer, and assuming eventually I should need to return to work, I have no job. What am I going to do? I want to do something meaningful, something real. I would like to be a counselor or maybe learn how to be a technical writer.

The key is that my vocation will need to be based from home. If anyone has any ideas, please share comments. I need to use my second chance wisely and really do something valuable for others. I just don't have a clue what that should be.

Thank you all for your care and concern. Love you all. Denise

#2 blade please, look ma no hair

Well, my hair is finally coming out. I had gone to Supercuts last week to get a real short pixie cut and went back again today to finish the "do". It feels strange to have a head of blonde fuzz, sort of Annie Lennox revisited here, only not orange. The only thing was the other patrons were all men and seemed a little disgusted with my "look". Well, sorry.

I feel OK though, because it's falling out and becoming annoying to manage. I was so fortunate that on this past Monday, I was able to receive two free wigs from the SCCA. I now have a very cute auburn bob cut and a conservative pixie blonde wig. I was going to get a longer blonde or red wig, but to be honest, I don't want to hassle with the possibility of the wig being crooked or out of place. Short styles will be easier to manage.

I also have a few beautiful scarves and hats, some compliments of Tammy Krikorian Gabel, thanks again. I feel like this transition to the "fuzzy look" is important. Sort of a rite of passage. Now people will know I have cancer and I don't have to explain myself all the time.

I am trying to walk a little more each day, but that is slow. Thank goodness mom has a treadmill. Not sure if I will walk today as the hair ordeal and walking from the parking space to the shop entrance seems like enough for today.

Tomorrow I meet a new primary doctor for the first time. I hope that visit goes well.

So today I am grateful for the compassion of a very nice stylist and thank God for all that He gives me. My hair will grow back again someday. The most important thing is being here on this earth, to appreciate my family and friends, and the beauty all around.

Love,
Denise