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Cindy & David- wondering?

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Hello Cindy & David,
Was sitting here thinking about you guys, wondering how your last treatment went.How were the doctors and nursing this time. Hope everything went well, and David is continuing to improve, little by little. It's the small things that make one excited, a few steps, words, or outings if possible. I probably hug my kid more now than I have ever done, and constantly tell him how much I love and appreciate him- that he is so important to me and our family. He soaks it all up with a huge grin :o)
We have been blessed so far. Benjamin is totally stable, no signs of cancer. He is being removed off his Keppra, which will take about two months. Cutting his dosage in half, at 30 day increments, so should be pill free by July. Neuro- decided that he had not had any seizures from his tumor resection, but was put on Keppra as a precaution. Hope it stays that way. After reading on this site the number of people who suffer a seizure later on after being fine for months or years. I hope Neuro is making the right
call, but his EEG was excellent. My daughter and I watch the whole procedure - explanations were give for each area of the test- was comforting to us. Amazing what EEG tell us about the human brain. Having his MRI still clean, was a relief, guess we all panic, every three months.
My husband expressed in wishes that our whole family should do funeral preplanning for the future, so if an when the time comes for any of us, arrangements and fees are all
paid. I about fell over, was such a shock, I burst out in tears, he felt so bad, because
we were having such a great day. In the long run, I know he is right, but still hard to
face, guess I'm not ready. I've already buried my parent's and lost a brother, it's just
extremely hard. Found out it was my sister who approached my husband, they had preplanned for their family 20 years ago already. GRRRRRR!!!!! Reminded of the time you were thinking about approaching your son about his future-- that is one tough area. How? It's easy to do when not family.
Is the exitement of your daughter's wedding building yet? Plannign can be so stressful, but rewarding in the end. David will be involved, anyway your hearts desire, whether he is there in person or video. We watched our only daughter get married in a helicopter over the Grand Canyon, by video. Still chocks us up watching this video, and seeing how happy they are, which we do every once in a while as a family. Now there is the first grandchild coming in July. Can't wait!!!!
Wishing you a wonderful Memorial Day weekend with your family and friends.

((((Hugs)))

Carol

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Cindy,
I am glad to hear that David's treatment went better this time. In reading about
Avastin in the Cancer Today Magazine in our waiting rooms here, it really is a rollercoaster drug. Patients are either really challenged by the drug, or feeling wonderful a few days after treatment. Just look at the positives, he's still functional, with a few oop's. Treasure each day, even if it is silence :o)
My best friend when she was receiving her treatments, where her port was, she
developed a huge lump. I was helping her dress one day, and saw this for the first time. I asked her, "What would you like me to do with your third boob", she started laughing , it
was a great stress reliever for both of us. Humor does wonders!
Well, we did the funeral planning- there is insurance plan that is done by age, being Benjamin is only 28, it's like $55.00 a month for ten years, for $10,000.00. If something happens before the ten years, it pays in full. We as a whole family are now
insured, and I did Thank my sister. It was still hard talking about this to the funeral director, but his was very patient, as I cried. This is something we all face, but is still so difficult to discuss. Benjamin told me that if at any time he can not move about on his own, he would not like to live. I was devestated, that he was so straight forward about his wishes.
Apparently our kids are stronger than we are :o) On a better note, my daughter and husband are coming for Memorial Day Weekend. She is 7 months pregnant with our first
grandchild (little girl). We are so excited, and they named her after me Lily Jane (Jane is my middle name). We do the picnic, parade, veteran's day program, along with a lot
of visiting and vegging out. Benjamin, will not start baling until after the holiday, so he has a busy weekend planned with his buddies. Four wheeling on trails, camping and a little fishing. It's been so warm, and the Walleye are hungry, not hard to catch your limit in a few hours. Fish does taste better cooked outdoors!!
Thank you for sharing pictures of your daughter's bridal shower, everyone looks so
beautiful and happy. What a treasured moment.
Have a safe and wonderful Memorial Day Weekend!!!

(((Hugs)))

Carol

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