Wednesday, November 26, 2008

Grandparents Day, Support Groups and Living with Life Threatening Diseases

Do you recognize this girl? I mean, she's in disguise and everything. This actually would have been the perfect Halloween costume for Kaelin. Dressed as a girl! LOL Look how nicely she cleans up. She "had" to dress up for Grandparent's Day at school. Kaelin told me the first year, "you have to dress up in a dress or skirt or fancy pants, and I'm NOT wearing a dress or skirt!" So the first year she wore red velvet pants. She wore this skirt and jacket last year as well as this year, but look, she's evolving. She actually is wearing a skirt! (with her Nike shorts on underneath LOL). She makes a very pretty girl I think! Nice break from the Tomboy mode. I love Grandparent's Day!!! (I like it even better when she lets me take her shopping for a new outfit)
Kaelin rode to school with my mom and my dad and his gal Ginger met them there for a fun morning full of music, dance, refreshments, school/class tours and socializing with teachers! Unfortunately I didn't make it to school to take photos with my dad and Ginger (did you take any photos this time Ginger????). Doesn't my mom look pretty too? You can tell they're related.

Today was a crazy busy day for us. Spencer is off of school all week, and Kaelin just had a full day Monday and a half day Tuesday. Today she had a 3 hr. private lesson with her Rhythmic Gym coach to learn 2 more of her competition routines while I attended my support group. The videographer/film maker Brian Lindstrom followed me to group today for more film for his documentary in regards to the importance of writing/journaling and what Write Around Portland is doing for people. Check out some links to some of his work below. His camera is very small and he shoots in a "fly on the wall" style that is unobtrusive. His goal is simply to show the audience a little of my world outside of the writing workshops.

Links to articles about his recent film "Finding Normal" are below. I then met with my OHSU medical student for the class "Living with Life Threatening Diseases" that I am a patient teacher for. We talked about "Hope" and "Pain and Suffering." It was interesting how those things have changed for me from diagnosis to now. I'm finding my answers are different than I gave my students from the 1st and 2nd years.

One thing that I mentioned was how, for me, the emotional trauma was so much worse and painful than the physical. I'd like to share an example of that point by sharing an emotional blog entry from another cancer survivor's husband, on Lainey's blog. He tells it from his heart and hits on all of the issues regarding stress, emotional and otherwise (especially paragraph in bold).

Dear friends, we start the next episode this week. I want to make sure everyone knows how serious Lainey's situation is. I don't post too much about this as Lainey reads this blog and i don't want to scare her. But many people see Lainey and say 'how can she be so sick, she doesn't look sick". Lainey has stage 4 ovarian cancer that has metastecised to her liver and it's growing.She is platinum resistant, which means many chemos won't work on her cancer. She is in a lot of pain, she is tired, depressed, weak,scared, anxious,shocked, distressed, sad, the list could go on and on.
Due to her current situation she has to be very careful.We've decided now she must stay away from the meetings for the winter , she will listen in by phone. She absolutely can not risk exposure to sickness, it would be a disaster. Every week when she goes in for chemo she has to pass a medical to be pronounced for for chemo. If her temperature is too high, is she is ill, if her counts are too low she can not get the life preserving treatment she needs.
We need your love and support. Phone calls , cards, meals,scheduled visits, so she is not totally cut off from the world. She needs to not feel forgotten. She may not be strong enough to answer the phone but she love's to hear your voices, and i need to know we are still loved and thought about.
Today we go to Stanford. Realistically there are not many treatment options, but if they have anything else to offer we will take it. Today i hope to make contact with a Doctor in Reno. We hope to go see him next week and if all works out we will probably spend the month of December there getting daily treatments. I am pulling out all the stops to try to get Lainey's cancer under control.
We are under a huge amount of stress, if you can imagine the current economic situation, add to it you can't get work or do work because you have to take care of your wife, add to it the medical costs, which after insurance are still tens of thousands of dollars, add to it the pain and sorrow of just going through this with the one you love,add to it the loss of everything normal in life that we usually take for granted, add to it the isolation and fatigue due to daily medical needs and procedures, add to it the sheer sadness of the whole situation, add to it we have been fighting this now since July of 2007, imagine all that and you start to imagine how we feel. The stress alone does weird things to your mind and body, you develop stomach problems, digestive problems, you feel dizzy, tired, unable to think, unable to remember, unable to do simple tasks. You mourn the abilities you had just 2 years ago, you mourn the future planning and growing that you wanted to do. You fall into a rut of getting through each day.
That is why kind words, hugs, emotional support are huge. If you don't know what to say , just say i love you , and give me a hug. Tell me i'm doing a good job, tell lainey how much you love and admire her for her spiritual strength and courage.
As you can tell we are in a new place mentally and emotionally, it's a desperate place where you cling to hope and pray for relief. Nothing is normal for us and it never will be again.
In the future i will need all the love and support i can get, behind my smile is a heart that has already broken, please excuse me/us if we aren't capable of normal, we wish we were.
My dear friends, we are not the only ones who suffer, this world is full of pain and suffering, do all you can to show love, kindness and mildness to others, after all Micah 6:8 say's : "He has told you o earthling man what is good and what is Jehovah asking back from you but to exercise justice, and to love kindness and be modest in walking with your god" to me that scripture says it all !
In closing take care of your families, they are precious, take care of those in need, and there are many, and "Never give up in doing what is fine,for in due time we shal reap ,if we do not tire out"

We Love you ,all you kindhearted people, family, brothers and sisters Love Keith and Lainey

In closing, thank you for those of you who read my blog, pass it onto other people in similar situations and who send positive energy my way. Thank you to all of you who have impacted my life and that of my familys. Thank you for standing by me, in the good times and the bad. For doing the little things in life to make it so worth living and for making those little things the BIG things. Thank you for embracing me, disease and all, and for all of the love and support in all of the many ways you have shared yourselves with us in our battle with Cancer. I couldn't be here without you.

Hope you all have a wonderful turkey day.



Paris said...

What gorgeous pics of K and your mom. Just lovely! K does look cute as a girl. lol. You are so funny. The blog post you added was very touching. I will add them to my thoughts and prayers. It breaks my heart that you and so many others have to bear this stupid cancer. I hate it so much. I am so proud to walk with you every step of the way. You are so strong, and give so much of yourself so others may benefit from your courage and experience. What a gift. You are a gift to my life and to so many others. I am so thankful for your friendship. I hope you have a wonderful Thanksgiving... all the best to you and your family. Love you, p

JO said...

Wow. I agree with Paris....Keith's writing was very touching. Cancer sucks!

Kaelin and your mom both look fantastic. Beautiful gals.

It was so nice to see you today. You really do look great. So glad that you are going to have a nice chemo break. Enjoy every day of it.

Have fun in Seattle and drive careful. Happy Thanksgiving.

Love you, JO

laura said...

wow shauna - that was very, very powerful. it's so easy to take things for granted... then you read something like that and BAM! wow. i will be thinking about that for a long time.

i hope you and your whole family had a thanksgiving full of love and life. lots of love to you, my friend!

laura said...

oh, and kaelin looks adorable! :)