gaile's Cancer Blog

February 28, 2008

I rarely update here...

Views: 631

Hello all of you remarkable people!
I am going to try to change my habits. I usually respond to other people’s updates, but never write my own blog. I shall attempt to do better. So this is WAAAAAYYYY too long. But I don’t journal anywhere else. Once I unload here, and thus feel cleansed, I will write more often, and I promise much much shorter.

My prognosis (I know, don’t scold me for using that word) was 18 months, 14 months ago. A year ago I was using a walker and a wheelchair due to bone metastasis (as well as many other sites). I have been fighting the fight with almost constant chemo, some worked miraculously well, some was a complete dud. I had gamma radiation to my brain this last December which was completely successful! I started a new infusion regimen in December also, and just finished up 6 cycles of it. It was 3 days in a row every 3 weeks. My markers continued to rise, but more slowly. My last PET scan showed improvement. Two of 4 liver tumors are gone, the other 2 shrunk some. Two of 3 pelvic tumors are gone, one is perhaps a new primary tumor, but I am not thinking about that. My spinal tumor left, but there is a new much smaller one. Everything else has fled my earthly container. That was just before my last two treatment cycles. So, next Monday, on our 24th wedding anniversary, I have another PET scan to see where we go next. I have a brain MRI/CT scan the following week to check if my noggin is still clean.

I FEEL WONDERFUL! I can walk quickly up 3 flights of stairs. Yes, I am bald for the second time, but I have been off of chemo for 3 weeks and feel like a normal person again. I had two units of blood 4 weeks ago, It seems I was a bit short of RBCs and platelets, as evidenced by my sleeping for 10 days (and nights) in a row. The sun is shining in Northern California, finally. And it has made a world of difference. Now those of you in harsher climates needn’t comment. I lived in Chicago for 11 years, Milwaukee, and Boston. Also 13 years in rainy Oregon and Washington. And yes, I was addicted to downhill skiing. So I do know about cold. But I am 55 now and prefer a milder climate. It’s funny that I am freezing when it is 55 degrees now. I do remember when I managed to survive wind chills of 40-60 degrees below zero. What a lightweight I have become. But I’m good with that.

I have been to Hawaii twice since I have been sick, and will go again for a week over Spring break. I am going to spend the time with my 19 year old daughter on Maui at my former sister-in-law’s house. My son and I did the same thing last spring, where I was unexpectedly blessed by the Dalai Lama! When I got sick my “Bucket List” included a week of special time away one-on-one with each of my two kids. So that is almost complete.

My son, who is at school on Oahu will fly over to Maui just for the weekend to celebrate his 21st birthday with us. I am so excited to be with both of my kids, away from all of the craziness of the last 14 months. No treatments, docs, or tests. Just the 3 of us, having fun and enjoying each other. This is heaven to me. And you can’t beat the weather, the lush jungles, the gentle waves and warm sand. So healing, mentally and physically.

I will see my doc right before I leave, so I will know my results. But I can’t imagine anything ruining my trip.

I have been buying audiobooks for my iPod and have found it to be the best therapy for me yet! They are helping me to focus more on being present now, meditation, and peace. All 3 of these have been huge struggles for me, but I am learning. I don’t tire as easily listening to the audiobooks as I do reading, and I don’t nod off after a page and a half!

Are any of you joining Oprah on March 3rd for the Eckhart Tolle 10 week webcast/class on learning your life’s purpose? His previous books are wonderful for teaching us to be present, now, and living a life of inner peace. My husband and I both signed up and are going to do it together. Also, try some of the books written by Ram Dass (especially you Baby Boomers who went through the psychedelic sixties). He is a bit older, but has dedicated his life to working with death and dying. He has had a stroke himself and really gets the experience of dealing with suffering. I met with him on Maui and he told me that the three things I needed to focus on were living in the now, concentrating on breath work (my breathing), and listening to my heart. Sounded easy at the time…

Life has thrown us all a big curve ball. And of course there are the additional issues that arise from the dirt, spinning out of the arc, created by the ball as it hurls through the air. Such as not being able to work, so we have to sell our house even though the equity in our house has dropped $175,000 in a year and a half and it is such a lousy time to sell! Such as my not having the energy or strength to clean out our family home of all of the mementoes of a family lifetime. Such as my having completed TWO graduate degrees right before I got sick so my salary would increase, never getting the monetary benefit from it, and still having to pay on the student loans. Like fighting constantly with the insurance companies and doctors offices about coverage, billing mistakes and discrepancies.

But as Sue so eloquently stated in her 2008 New Year blog, there is SO much to be thankful for. There are my two fabulous kids, who by God’s grace ended up at home with me (unexpectedly) while I was at my sickest (for over a year). A husband who works at home, and even though he usually travels a lot, his schedule changed dramatically so that he was at home when I needed him. A big brother who leaves work early EVERY WEDNESDAY to spend time with me. We talk, go to coffee, shop, eat dinner, and if I’m sick he sits on my bed and we enjoy just being together. My parents are both still here at 90 and 83 and we have had the chance to share so much love and memories. I have more friends that I ever imagined and they are such remarkable people that I am honored to know them. My best friend has become more like the sister I never had, but always wished for. And I will be her matron of honor at her wedding in July!

I have miraculously reconnected with multiple high school friends (who live all over the country) from 40 years ago, which was an out-of-the-blue shocker! My husband had bunches of frequent flyer miles and hotel points so we could actually go to Hawaii which I love so much. My niece, who is like a daughter to me, had a baby girl 5 months ago and and they are both bright lights in my life. I have discovered such wonderful things about my kids, and they have discovered wonderful things about themselves too, throughout this journey. I have put on the breaks and now take time to smell ALL of the flowers, and even the litter box (we have 3 cats, and a smelly dog).

I have, as Sue pointed out, had time to put my affairs in order, try to teach my husband how to handle our bills, taxes, etc. And sort out family heirlooms. So many people don’t have the time, as there is no forewarning that this journey is over. If you see/saw “The Bucket List”, a line that I very much appreciated was uttered by Jack Nicholson’s character while staring in the bathroom mirror during his hospital stay. He had just finished being very intimate with the toilet bowl after chemotherapy… “And some lucky guy somewhere just died of a heart attack”. True, but I would bet he didn’t have time to tell those he loved, just how much.

Boy do I feel cleansed, almost as if I have had a high colonic. ; >o

If you stuck with this all the way through, hooray for your patience, and thank you for being a part of my life.
Bless us all for our strength and courage. I pray we can all live for THIS moment as it is all there really is, and look around… isn’t it miraculous?
Gaile

Jill – how do we contribute to the running of the wonderful site?