Saturday, September 22, 2012

Back to the Battle

It sure is beginning to look like fall in Southern Indiana this week and I am glad. This has been such a long, hot, dry summer it is a relief to see it going. Of course we don't know what fall and winter hold for us either. Hopefully a return to normalcy... maybe. I just don't do well in heat, but have been loving the bright, cool days we have had this week.
Stephen King's PetScan revealed more cancer in his spine, which explains the discomfort he has been experiencing lately. But the good news is the lung tumor is unchanged. Dr. K says we will continue with the support drug regime for 6 weeks then get another scan to access the situation. He will probably need another round of chemo by year's end. She cannot use the Taxol from his last treatments and we are glad. Finding a new combination of drugs should be simple, but we won't know how he will be affected by them. Just praying the effects will not be as devastating as the Taxol. Steve feels good and is now walking ove a mile at a time each day. Hank loves their outings and is learning not to pull him down the road too fast! The neuropathy in his feet is still an issue, but Steve walks anyway. He is so tired of being held back by this, he pushes past the pain. Then he rests most of the afternoon. He has gained so much weight since his appetite is enormous. The last weigh-in really got his attention and he has cut back on his cookies abit. Still loving his pie and persimmon pudding though. The doctor doesn't recommend losing much weight with chemo looming over him. He will need that to help fight. Oh, cancer is such a challenge, I cannot find a word which describes what it is. Stephen King says, "it sucks", but I do not think that is a strong enough sentiment. My sister calls it "Evil", and it is that. It certainly calls for flexibility, you have to be ready for anything all the time. I've always considered myself as a go-with-the-flow gal, but sometimes feel stressed by the requirements. Poor Steve doesn't like change and struggles with the reality of his situation. He holds on to the hope his case will be the exception to the rule. It may, but we do not know that and have to be prepared for anything required of us to ensure his health. Sometimes we both want to choose to flee instead of fighting, but we will not.
The kids and I are going to Cape San Blas in October since we didn't get a vacation this summer. We are all so anxious to be back on the beach. This time our house is next to St. Joseph State Park, as well as oceanfront. The Bay will will to our back and we can explore all the hidden places. Our little boys love this,  finding shells and crabs and even bigger sealife while wading in calm water is exciting. I once caught a horseshoe crab with my sandal. Surprised us both, but Gavin thought is was sooo cooool. Steve and Stephen say they aren't going, but we are still working on that. Stephen has a blacksmithing committment that he needs to keep and Steve just doesn't like Florida. So it is Gma and the girls and boys and we love it.
An organization in the county is having a Benefit for Mackenzie tonight to help on her medical expenses. Orange County has the biggest heart in Indiana. People have been so supportive through all of her trials. The Benefit has an Ice Cream Social theme, local musicians and a silent auction. Several friends are singing or baking cakes or donating items for auction. It should be a wonderful evening. I have made three cakes to add to the 27 made by others. The local Hardees is donating all the ice cream, Lisa and Denny are good people, always there for others. Next weekend the group has a Benefit for the wife of the high school football coach who has been hospitalized for months with something they cannot diagnose. No one ever seems to tire of helping others in need. I love small towns.
Our boys are doing well in school, inspite of a shaky start for Caleb. He had an emotional summer and wasn't quite sure Mom and Kenz would be OK at home without him. It only took a few days for him to settle in and he really likes his teacher and classmates now. Gavin protests, as always, that he doesn't like school, but he is an excellent student. This year his teacher is a lovely young woman I had as a student. She was always a favorite of mine, bright and responsible. She has grown into a creative and loving teacher for my youngest. Madeleine struggles abit with 7th grade, as we feared. The junior high isn't ready for our fuzzy haired, non-speaking sweetie, with her ADD, OCD, MMI issues. Poor baby takes her own temperature daily just in case she can stay home. Maddie has always loved school and it is heartbreaking to witness her dread of going to school this year. We have considered home schooling, but Madd thrives on the interaction with other kids and it wouldn't be fair to take that away. She can learn and do her work but needs so much more time to process info because of the communication disorder. Shawn called a Case Conference a couple of weeks ago and thought everything was settled but someone dropped the ball and we seem to be back to square one. Please share any bits of advice you might have for us. By the way, I really hate Indiana's new education path.
Lots to do today to get ready for the Benefit, I'd best get out of this chair and get to work. I miss you all and hope we can get together soon. Talk to me, Ladies. Love

3 comments:

Alison said...

Tell Shawn to keep calling Case Conferences! It's so much easier on everyone involved to just do what is best for the kiddo, even if it doesn't fit the scheduled mold. As educators, we just have to go with the flow and think of the kids. It sucks, there's no time to go to the bathroom, you go home exhausted, but knowing the kiddo has what she needs is so powerful at the end of the day. Everyone will have a much better year if the plan is just followed. Hope things look up for her. Middle school is rough enough without all of the stuff she has going on.

I'm so sorry to hear your news. It was not what we had hoped to hear either. I'm helping to organize a golf outing for a friend and co-worker who doesn't have health insurance and is fighting tonsil cancer. We are at a standstill waiting for NCAA compliance (for the last 6 weeks!)to give the official of because he and his wife have kids playing for college basketball teams. It's so sad to me that we have so many generous people willing to help but the powers that be can say we can't help without red tape. Bureaucracy- BAH!!! It's in everything!

School has been great for all the boys. Rex is settling in at the High school. He is finding out how much work it is to teach gen ed- who knew?! Jordan and Trenton are doing well too. Jordan is doing so well in Cross Country. Trent even ran today in a 2K and placed 18th out of 40. They did great!

Hope all is well with everyone else. I hope we can gather for a Gaggle get-together this fall. Miss you all!!

outlivinglungcancer.com said...

Hedy, it sounds as if you have much on your plate, and I am sorry for that. Do encourage your husband to continue to think of himself as exceptional (it can't hurt and may help). As soon as I was diagnosed I peppered my oncologist for examples of what he referred to as 'outliers': people with lung cancer who had beaten the odds and lived well beyond their statistical probability. I decided that I would become one (someone has to be the exception, why not me?). Obviously, luck plays its part as well, but focusing on surviving helps us make those tough decisions.

Linnea

Sue xx said...

Aww Hedy, I just read your latest comment on my blog and send you and Steve my love, it seems all too much at times doesn't it?
Stay strong,
Sue