Second Year Anniversary

It was two years ago June 16th that I was told I had cancer. It was within a few days that my husband and I were told that the diagnosis was a lot of cancer. What a shock, total disbelief to hear those words. Of course they rescinded that diagnosis after the final MRI report came in. Of course you all know the story of how wrong all the scans were and that surgery and biopsies confirmed that the original diagnosis was right.

So where am I two years later: Both breasts gone, radiation and surgery scarring. Pain and fatigue levels are on the rise. I had treatment today and when I got home I was out cold for hours. I'm just terribly fatigued and my right leg is not doing well at all. The highest part of my femur bone hurts like it’s fractured.

Because I haven't been feeling well I didn't end up taking off from treatments. I vowed to my youngest son that I will be here to see him graduate from high school in four years from now. I do question whether I will make it that long but it is still very much my goal, so treatments are back on the schedule.

I've also made a decision to check out The Gathering Place. It is a local cancer support center. I think I'm going to try and stop there tomorrow morning. I'm feeling the need to do more than write to you alone at my computer and read secondary breast cancer blog sites for therapy. I'm starting to feel that maybe I need to try to be with people like me, people who live with the daily fear of dying. Envisioning my family’s pain due to loosing me is getting to be more than I can bear. That I'm an introvert by nature I don't know if it will work out but I'm willing to give it a try.

I know I'm still not very good at calling and staying in contact even via email so please call me and talk to me if you haven't gotten a response. If I'm sleeping Frank will tell you otherwise it is always great to hear from you.

Love,
Janet

Catching Up

Hi Everyone;
I know it has been awhile since my last update and many of you were concerned. Healing from the radiation treatments took awhile and I just wasn't feeling up to writing.

I've been going through treatments every 2 weeks. On the second week I get the herceptin (bio-therapy) and the forth week I get the herceptin, bone strengthener and a hormone shot in the stomach. The last hormone shot was really bad and so I've had enough of that. The other option to the shot is to have my ovaries removed but my white blood cell count is too low for surgery. I've had two more sets of scans since the last post. The cancer is still spreading but at a moderate rate.

So now I think I'd like to take some time off from the treatments. I had a project install over this last weekend so I cancelled my June 6th treatment. I will probably cancel the June 20th as well. This doesn't mean that I'm giving up it’s just that I've been through three years of hell and I need a break. I think I will take a summer sabbatical.

Overall, I have days when I get very, very sick. I just purge and all system numbers go crazy. I end up dehydrate, get very weak and fatigued. Those days I just want to go to the hospital and have them put me out until I feel better. The pain is more intense too because I don't hold any of my meds in. I do have days when I feel pretty good and control the pain with the meds. I'm usually loopy but can't complain because I'm not down and out. I can actually feel fairly normal or as normal as is possible these days.

On good days I try to do things around my house. Of course I pay in pain for the good days but it's worth it. I've been trying to walk more without my cane and haven't had to use my transport chair when going for treatments. Now I do have to use the scooters in the stores because I just can't walk around that much without getting too fatigued. Some people look at me like what is a young person using that for, like I'm an abuser of the need to use them.

Today a store clerk asked me as I was going for the scooter if I was a person who was in some train wreck? I said no that I wasn't so lucky. I told her my problem was cancer. She felt really bad and told me she was really sorry. It's funny how people react to the word cancer. It is such a powerful word.

So now on to more interesting stuff... The people that I work with spoil me rotten. A mom of one of the ladies made me the most beautiful pray quilt. They are also doing a fundraiser raffle of a sports car and will be holding a benefit dinner in early September. The proceeds go to a trust for my two sons and a fund at the Cleveland Clinic named the "Barb Leslie Fund". This fund is used to provide basic living needs to women with breast cancer who would normally be forced to give up treatments in order to go to work to pay the bills (rent, utilities, etc). The fund pays the actual bill and does not give monies straight to the person in need.

I will post the website for the ticket information and will pass along the benefit dinner info when I have it. The raffle tickets for the car are $100 with a 1 in 2000 chance of winning a 2007 Z06 Corvette. It has a 600 hp engine for those who understand that car stuff =)

Anyway, I'm glad it is summer. I was feeling really down in the dumpster for awhile. My caseworker told me I had to find something that made me happy so I made Frank move walls and stuff on the second floor of our house. He is painting everywhere and we are putting in new carpet. I also snuck in the purchase of a bedroom set. Well of course we can't afford to do it but and I'm sure I'll regret it when the bills start coming in but for now I'm happy...

I love everyone and hope to start returning all the emails and phone messages.

Janet

New Normal

I've been healing from the radiation treatments. I am getting better each day. Was back at work this last week. I was out Friday for the Herceptin treatment and the second bone strengthening treatment. I wasn't feeling well Friday night but Saturday morning was feeling better. I had some long-time friends over to visit. We went through pictures and had lunch. It was a great time.

The last couple of weeks have been extremely emotional. I struggle to accept that I will never be the person I once was. I am still holding on to the hope that I will improve. But for now, I'm forced to accept that there will be a new normal for me. I applied for a handicap parking tag and take whatever meds are needed. I want and need to continue living as much of my life as I can. I'm still moving forward with all of my planning. It's going slower than hoped because of the affects of the treatments.

I have another bone scan schedule at the end of the month. Hopefully things will look better. I'll keep you posted on the results.

Luv,
JK

Rad treatments are over

Hope everyone had a good new year.

I finished the 10 radiation treatments but I had a really bad time. They did the front abdominal area and back of my hip bone. It burnt my lower intestine and bladder. I was put on morphine because the pain was just agonizing. I was also given fluids often because I kept dehyderating.

I can't sleep at night worrying about when I'm going to die. I understand the whole "get hit by a car tomorrow" thing but this is different. You don't go to bed each night planning and fearing you'll die in an accident the next day. I can't stop picturing how hard it will be for my family when the day comes. It's hard for them now worrying about me. It's just so stressful.

So, I'm praying to still be here in June. My son graduates high school this year. If I'm doing okay by then, I'll look forward being here for the holidays. I've been working on my funeral arrangements and getting my paperwork in order. I'm hope to spare my family from having to deal with all of that stuff when something does happen.

Sorry for the sad posting. Just bad times after being so sick the last 5 weeks.

Merry Christmas

Merry Christmas to all. We celebrated with our children, my parents, my sister and her family, and my brother and his daugther on Christmas Eve. The kids spent Christmas day with their other parents. It was a nice quite time. Christmas day we spent with Frank's brother and his wife's family. It was very sad time because everyone is still so shocked by her passing.

I had an infusion treatment last Thursday which made me pretty sick. I started my first radiation treatment on Monday, Christmas Eve. I resume the treatments tomorrow. By Friday, I will have completed four of the ten ordered. I'm doing fairly well. I pain levels are increasing every day. I'm hoping the two treatment types will help.

Love,
Janet

Results are in

I received a call from the doctor today. The bone biopsy confirmed that the cancer in my bones is active. I have to see the radiation oncologist on Monday and Thursday I start back on Herceptin treatments and some hormone treatment. There is a hope that the hormone treatment will inactivate or slow the progression to a crawl.

How long I have remains to be seen. If they can't slow the progression it's not likely that I'll survive 3 years. If they can I could live 5 or more years. So the long road has not ended but gotten longer. I fear the pain I will continue to endure. I can't do much right now but take it one day at a time. I think the worst pain that I will go through is watching my family's fear of my leaving them.

I know this isn't what we expected but I will continue to fight this with everything I have.

Biopsy is scheduled

My bone biopsy is scheduled for this Tuesday (12/11) at 9:00am. They will do a concsious sedation. So, hopefully I won't be aware of the pain too much. Please think of me and say a prayer that it's inactive.

I'll keep you posted as soon as I hear something.

Love,
Janet