We missed a "Blog" (a noun) last night as we had delightful company and then "crashed"....as today was a big "chemo" day.
We had accumulated a "potful" of questions for the oncologist today...and he, in his amazing way, was able to address all of them in a way that we clearly understood...some of the answers we didn't care for, but we understand where we stand.
In no particular order......
We saw the scan of the lungs last week at the pulmonologist...the tumor in the left lung seemed to us to be larger than before the treatment last year and the right lung seemed to have many small tumors...is this true we asked? And why with all the chemo and radiation was this possible?
He explained it this way.....many, if most all the cancer cells were killed by the radiation and chemo....not all were killed, and those that survived multiply at a rapid rate...and they spread. He said that it is not the size or number that is the critical thing at this point, but rather, can the cancer be controlled.....that is what his task is to do.....control the spread....and this control may involve shrinkage of the tumors.
We understood after questioning, that this is the "first line" of treatment of stage four cancer....."lines" will make sense to those who have read about treatments. If the treatment is having no effect on the cancer...and this is the best treatment, then the odds of the second line of treatment be effective are not good.
How do we know? He is scheduling a scan after the third cycle of treatment.
Will the cycles of chemo continue? Yes, if any impact is seen.
We asked about the many suggestions we have received about miracle cures and alternative treatments. He said the best that can be given to/for Linda is love and support.
Linda told him about how we wanted to move to Portland to be nearer to family once our house sold...she also talked about Oregon Heath Sciences University (OHSU)....we've had recommendations to go there for treatment. He supported doing treatment where patients live...trekking off to Seattle for treatment or wherever and living in Central Oregon is very difficult. he supported getting a second opinion at OHSU. It was clear in his discussion that he is in constant communication with OHSU......they are not doing anything different than he is doing...he is very much aware of the new lung cancer oncologist, who is said to be the best in the nation, coming to OHSU....he supported Linda seeing him for a second opinion.
We discussed clinical trials...first he explained clinical trials...they are experimental, when nothing else works...they are not that successful....but provide answers to what works and what doesn't. If there is a lung cancer clinical trial in Portland, he will know about it and can be involved.
Where are we....We feel very good about this oncologist....as he said...he doesn't "push" answers or information on us...when we want to know, he is very responsive. Linda has a lot of trust in him. He is not isolated from the "real world" or the "Bigger world". He knows what is going on. Linda has decided to have an appointment set up with the OHSU oncologist but not actually go up there until she has the upcoming scan in hand as there will be more information then as to where she is at. The Bend oncologist said he would have everything she needed to take with her for the OHSU oncologist to see.
She knows friends and all want to help. She wants you to know that she was very emotional today....she went to a negative place....and almost to a place of "resignation". She then began to gather an inner strength and focused on "believing" again..believing she can beat this. I could see the tears welling up in her eyes and the pain behind them. Now I see her determination back.
What does she "need"....."want" is a better word...continued love and support...recognize she is up against a tough situation and urge her on..and we know you are doing that now.
Linda's immune system is down....duh....the chemo does that...so today they had to modify the amounts given to her...as today was her big chemo day. She did well..and came home and napped well. We are in bed at 7:30 pm as we are both mentally, emotionally as well as physically tired. And then I realized we were going to do the Blog..doing the Blog is actually energizing...
We thank you...and GOOD NIGHT!!!!!!!
ps...because of Linda's immunity drop, it is important to understand if you visit...be well....and limit your "touching".......and everyone wash their hands with soap and water before reading this Blog.
Friday, February 27, 2009
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8 comments:
I know you are already in bed now. Thank you for putting in the effort to keep us informed. By the way, I not only washed my hands before writing my comments, but I also brushed my teeth and gargled. Having confidence in the oncologist is huge. Glad Linda likes hers, even tho the information he gives might not always be what either of you want to hear. The honesty and courage that you both display is awesome. Hope that at this moment you are both having pleasant dreams.
Marilyn
We all believe Linda Lou. You bot have courage that amazes me. I wanted to share this Apache blessing with you
May the sun bring you new energy by day,
May the moon softly restore you by night,
May the rain wash away your worries,
May the breeze blow new strength into your being,
May you walk gently through the world and know its beauty all the days of your life.
Good night dear friends. Love you.
Ginnie
I think of you often, Auntie. I love you.
-Debbie
I've washed my hands and am ready to send my comment.
Its great that you can sort through all the medical talk and that you've found a doc that will be straight and honest. That's a silver lining that you can help. Sounds like he also gets that love, support and prayers can make a difference.
Wishing you a restful day.
Love
Ernie & Kim
Dear Linda and Dave:
Some advice that you are welcome to take or leave:
1. Check your health insurance to see what it says about clinical trials. Skip's said that if he was in a trial, his insurance would pay NOTHING related to his cancer.
2. Consider that you might be a "control" in the trial and get a placebo.
3. Make the most informed decisions that you can, go forward, and don't look back and ask the "what ifs".
4. Every morning, thank God that you have another day together.
Love, hugs and prayers,
Ruth Ann
Hi guys! Ruth Ann's #3 is a very important rule to live by. My Dad still sometimes reflects on the "what ifs" and I have to remind him that those things don't matter. We made the best decisions we could with the information we had available to us. What's done is done and everything else is just theory. Don't get caught in that trap. Move forward, make the decisions that feel right and be confident in everything you do.
I most certainly understand the place you're at right now. I've been there with Mom and I know that it's not much fun, but it's a time of resolve and renewed commitment to the fight. I'm positive the two of you, with help from all of us, can face this battle and can proceed forward with grace, good humor and love.
This is, without doubt, one of the most difficult places to be in life. But, if I know anyone who can face this and come out victorious, it's both of you, together.
Love to you both, as always.
I don't really know what else to say that everyone has not already said to you, so this is just to let you know that you're close in thought and prayer...and we hope that this weekend is one of renewed energy and believing that you can make it through this rough patch right now. Lean on us as much as you want and need...we're all here for you (both of you).
Love,
Jim and Swee
David, You know I have a problem being diplomatic about ways I say things. I have always been a very blunt person, so trying to tip toe around a subject is real hard for me. One thing I learned when I got into counseling was that anger was God given. And to deny it was just as dangerous for me as raging. When put in the proper perspective, it can be quite useful. We are human, and to deny our disappointments or whatever can be disasterous. Physically, as well as emotionally. Get mad, and stand up to this disease. You are survivors, and I know you can beat this. I can see you Linda finding that inner strength to take on the task. So get busy Lil Lady.
"WE" can do this.
Love You, Guys. Vicky
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