Cindy & David- wondering?

cindysuetoyou said:

Hi, Carol.
Hi, Carol.

Thanks for asking about us! David and I are doing okay. I think David has maybe plateaued out, for lack of a better way to describe his status. He hasn't really improved but he hasn't gotten worse either. He still can't walk without a lot of support, he still isn't using the bathroom consistently, and he's very weak and shaky, and he sleeps a lot, but his mind is pretty clear and he's not in pain except for an occasional headache. He tolerated this last treatment much better than the previous treatments. I don't know what the future holds....is this as good as it gets? And how long will he be able to stay at this level of functionality? I am going to ask the dr these questions on the phone, not in front of David. I'm not sure I want to hear the answers.

You had asked about how often he was getting his treatments....he gets Avastin every two weeks, and carboplatin every four weeks. When he does carboplatin, he does it on the same day as Avastin. It's really hard on him. His doctor said we could split the treatments up, but they were trying to spare David the ordeal of coming in three times in one week....once for bloodwork, then for carboplatin, then back for Avastin. David opted to go in on a Monday and get the bloodwork done, then come in on Tuesday and get both done in one day. He HATES going in to the hospital for any reason, and he hates the infusion clinic just as much.

I'm so glad to hear that Benjamin is doing so well! I love it that he is beating this cancer. It brings a lot of joy to me. I hope he has a wonderful summer with lots of fishing trips and other special, fun times with his friends and family.

My family and friends have been wanting to do something for me but I really didn't have anything that I needed them to do. So they put together a little surprise for me...a pamper day. My sister is taking me out for lunch at a little french bistro with specialty wines (I don't drink....never, nothing...but I might make an exception for this!), and then we are going to the Oregon Garden, then getting pedicures and a hydro massage. While I am gone, they are doing an extreme makeover in my back yard. They are pouring a concrete deck and putting in a pond and waterfall and landscaping the entire yard (it's a small yard). I have totally neglected my yard these last three years. I love to spend time outdoors and I am very excited about having my yard cleaned up. I told David that we would have our morning coffee out there and throw balls for the dogs. He said he would like that very much.

I have developed a routine with David. I'm loving it. We wake up kind of late (we are both night owls) and the first thing I do is test his blood, then I make a really nice breakfast. We eat it together in bed with lap trays and watch the news and I talk about what's going on in the world and he listens. Usually Larry comes in the room and visits, and David's sister Christy comes over almost every morning, or his brother or some other family member. Today 2 of his cousins came by. We linger in his room and drink coffee. Then David takes a long nap and I do stuff in the house. Then we have lunch together, usually in his room, and then I help him shower or I give him a bed bath with a wash cloth and some special soap that I got from the hospital..it doesn't have to be rinsed off. Then he naps again. Our evenings tend to be different, depending on what is going on. But I usually spend several hours in his room with him, watching TV or goofing off on the computer while I sit in a recliner next to his bed. The only thing I really want to do is spend time with David. I really don't want to go anywhere or be away for very long.

This was a really rotten week. Our friends' 16 year old daughter who is fighting a brain met from osteosarcoma is doing really bad and they stopped all her treatment on Thursday. They called hospice in today. Her mom and dad are heartbroken but hanging in there. I just hate to hear how she is doing. She and David were really good friends and they had a special bond. They talked a lot and encouraged each other. Sometimes they were in the same hospital (different buildings) getting treatments or having surgeries, and her mom and I would get together and encourage each other. So this is really hard for my family too. I didn't even tell David about her turn for the worse.

Then on Saturday, our good friends' daughter in law was killed in a gun related accident. She was only 25 and they have two young boys....a 2 year old and a 6 year old. I don't know the details but they were apparently cleaning their guns after going to a shooting range and he shot her on accident. Her dad and their boys were also in the room when it happened. Their family is devastated.

Then today we learned that another friend from church was on his way to Arizona to visit his mom who is losing her battle with cancer. He was on his motorcycle and he had an accident and was killed. He was only 47 and leaves behind a wife and a son and daughter. So it's been a terrible week. When I heard about the motorcycle death, I just crawled in bed with David and watched TV and slept a little. I never told David about any of these things. I figure that there's really no point in upsetting him. I don't know if it's the right thing or not....

You mentioned that your husband had suggested doing the funeral planning thing. I know it's a terrible thing to think about, but please learn from my mistake...I haven't done it...or filled out an advanced directive...and now the need for those things is right in our faces, and it makes it a million times worse. I wish so much that we had taken care of these things back when I could say, "I don't think that we need this any time soon, but let's get this out of the way." Now if I do it with David, it's totally going to look like we are doing it because he's on the verge of dying. I don't believe death is imminent, but it's so much worse to do these things when you feel weak and sick and miserable and really scared, vs doing it when you are on top of your game. I wish I had done it right when David was first diagnosed, and we could have moved on. Now it's stressing me so much and I can't bear to bring it up to David.

On a more positive note, the plans for my daughter's wedding are going along. We had a lovely shower for her last Thursday. I'll put a few pictures up in my expressions area. We are also very happy for Cathy because she was just hired for a position that she wanted really badly. She is an administrative assistant to the HR person, the marketing director, and the office manager of Hope Orthopedics, a large clinic here in Salem. She's super excited--it's right up her alley and it's going to be a great career move for her. I'm a little worried about her taking on a new, demanding job one month before her wedding, but this job is too good of an opportunity to pass up.

Thank you again for writing. Please give Benjamin a hug from me, and please keep me and the rest of us here on CSN up to date on your summer. I hope you have a lovely one!

Love and blessings,
Cindy