gaile's Cancer Blog
April 16, 2008
| And so we just wait... ? | Views: 375 |
As this adventure continues the roller coaster becomes steeper. The inclines are longer and thus the anticipation creates more anxiety. The declines are faster and thus more frightening.
There is always good news, still, except there is ALWAYS a “but” attached to how those test results read. In March I had been off of my third line chemo for 2 weeks. I had a PET scan which showed some great news indeed. All of my liver tumors were cold. I had started with 4, in January there were two, and March, none! Both of the tumors in my left pelvis were cold. My spinal tumor indeed was also cold. No activity in these guys!
“But”, of course, there was a new spinal tumor, a new nodule on my lung (my lungs had been clear of any cancer since my first line treatment over a year ago). The large tumor in my right pelvis (which had appeared in October and doubled by January) was not responding to the chemo (but was no larger).
So, the question was, “Is this a new primary tumor? A new cancer?” (I am reviewing here what I wrote before to make this more cohesive. I know when I read other people’s blogs I can’t remember exactly what happened to them before and have to go back and read them.) I asked my doc what we would do about this persistent devil. She said, “Nothing, you have lung cancer”, as she gazed into my eyes with moisture in hers. She told me I was not a candidate for a hysterectomy, as I had lung cancer. I protested that if this new cancer was a threat to my life why weren’t we going to go after it? She gave me another of those looks. I told her I wanted it diagnosed so we would know exactly what we were dealing with. She placated me with a compromise. She said she wouldn’t do a biopsy but agreed to an MRI/CT to try to diagnose it. So a week later we did that, in conjunction with my 3 month follow-up brain scan. My brain scan was still okay, no change.
Now, to the new news… here is the strange part. The pelvic scan showed the pelvic tumor, which was shown actually to be in my endometrial wall, was not active. In the PET scan, one week earlier, it lit up like a Christmas tree. So, my doc was comfortable with the pelvic scan results. I, on the other hand, was perplexed and as usual, not comfortable.
So, we wait, she says with no activity in the tumor there is nothing else to do. She has given me a further reprieve from the discomforts of treatment. Time to enjoy the Spring and my family. I have been off of treatment since February. And will not see her until the end of May.
I went ahead to Hawaii for a week with my 19 year old daughter. My son who goes to school on Oahu flew over to Maui to see us and spend the weekend of his 21st birthday with us. I miss him greatly and it was wonderful to see him. He will be going to Japan in September to study abroad for his junior year and won’t return until the following August, almost a year. I pray I am well enough that I can fly over to Japan to visit him. Our Maui trip was relaxing and I escaped the routine of being living with cancer, and we got away from the negative vibes of my husband! I wanted so to stay and pretend that was my life…
I will have a followup PET scan the beginning of June to see what surprise has been growing inside of me while I innocently go about my life, wondering each moment what might be lurking within. I am the matron of honor in my best friend’s (second) wedding in July and will also celebrate my 56th birthday. I plan on attending my first (for me) high school reunion. A picnic for a whole decade of graduates. So I am setting goals, and events in the future. Things to look forward to, to plan for, to live for. I pray I will go to Japan in February of 2009.
The reality is, I was given 18 months to live, 16 months ago. I KNOW I will pass the expected prognosis. I intend to pass it by a great margin. I am not working, which is tough financially, but have decided to take an Accelerated Death Benefit from my life insurance policies. For those of you with a prognosis of 12 months or less, this is a great way to keep afloat during this tough time. You can get 50%, or sometimes 75% of your benefit – penalty and tax free (in most cases). If your doc attests to the prognosis, they just send you a big fat check. And if you are still kickin’ after the 12 months, they assuredly aren’t going to make you pay it back! I was in a panic that we would have to hurry and sell our house (in this lousy market!). Now I can relax a bit while we live off of my life insurance. It will still leave the 50% balance for my family after I am gone.
So instead of frantically packing and cleaning my house, I will find ways to treasure my family and the seasons I have left. I pray my results in June are not too terrifying, and that there may even be a miracle. But while we wait, I feel good. My fentanyl patches for pain make me very sleepy, and I really could sleep 24 hours a day, but I fight it. Some days I do, just sleep. But I am thankful that each day I awaken to a list of things to do, whether I do them or not. I still spend time caring for my parents who are 90 and 83 years old. I just got my father through pneumonia, and both of them through food poisoning. So I am still useful. Without purpose you have despair. I help them with their medications and doctor appointments, and run them to the E.R. and urgent care as needed. I babysit my niece’s 6 month old daughter on occasion. I visit with many friends and am getting to know my older brother again. And of course there are my two wonderful and challenging children. There is so much to enjoy. See, I am no longer whining, I knew this would pass, for now.
I promise myself to live in the present as my past is but a memory and my future but a dream. My only reality is in this moment. I pray we all have extraordinary moments, and don’t ever consider that we are waiting.
06.22.08 - 
Thanks for your support -
You are facing life with an enormous amount of courage. I too was given 6 months to live in March of 2004. I thank God daily for allowing me to make the most of every day. Those of us that have our lives ruled by Pet Scans and MRI’s can truly understand the power of a medical test and especially the appointment when they give us the results. You are a trooper and you should be proud as I know your family, and your blog for a cure companions are. Rock on, this to shall pass.
Here is you Hug for the day. Sherri
Dear Gaile; You sound quite different from your last posts. You were really struggling with your relationship with your husband. I now see a new person that is living for the day without so much anger. Truly a positive enlightenment came your way. The Blog for a Cure is one great place to air out our feelings. I give a lot of credit to the person who dreamed a dream of helping others. I find it very hard to talk about my situation to many people. (quality not quantity is the key here). Sometimes I feel very alone in this battle which makes me sad at times. Then I come to Blog for a Cure and find that so many people are willing to share their experiences with strangers. However it seems this platform gives is a kind of club atmosphere where we can air our deepest feelings. That is GOOD. You are a true fighter my friend and this is something I will take with me on my own course. Inspiration is what you can give to us and that you have shown. I hope that any new reports to you are positive and that you have more time to enjoy the Seasons. Take care. Weezie from Canada eh.
Yes to the extraordinary moments! May your life be filled with everyday miracles. (I read that somewhere and loved it)
Thanks for sharing, sometimes I feel like such an outsider to my husaband and his evil mistress-the cancer. Reading your posts gives me insight to what he may be feeling and thinking.
I never met a roller coaster I couldn’t conquer, you haven’t either, besides, the cotton candy stand is right next too the exit, I’m buying!
Hugs!
Deb
Your blog is so uplifting to me! You always look for tomorrow and what it brings…you have many positive thoughts. I am so happy you got to go to Maui and see your son, and you will go to see him again! Think of YOU and go with the flow…and relax when you need to relax! Be good to yourself..sue