The down side of the roller coaster ride
Jeanette here,
I write this with a pit in my stomach - the one I knew would come eventually.
Rock / Doug was admitted to the hospital, early this morning - the first possibility was pneumonia, which he wrote about in his earlier blog. Subsequently a Doctor of Internal Medicine came to visit with the abysmal news that they would treat pneumonia, however he was more convinced that this hospital stay is from cancer tumors (with a disclaimer that he is not a cancer doctor). Strangely enough I heard nearly the same words from our vet when I took my golden retriever in - is there in fact some symbiotic bond between a man and his dog? Not too comforting as Chewie passed away shortly afterward, we believe from tumors that are common in older golden retrievers. Two months later, our hearts still think daily about this big lummox who brought so much joy into our lives. If it's this heartbreaking with the family dog, how can one even think about surviving the loss of a soul mate? How can his mother and father deal with losing a son? Will his brothers think about when they sang "Rock-a-bye baby", leading to a lifelong nickname? These questions are abruptly facing us tonight - not for the first time, but with a reality that says that the Cancer Wolf is at our door.
His breathing is very short - he likens it to breathing into a small balloon. Talking causes coughing fits, and on top of it all, he's dealing with pain from the surgery. There is an air in the room as if the nurses are just making him comfortable - no talk of getting better and leaving, just a sort of resignation that they will get him whatever he wants to ease the pain. The nurses at the desk see me and look down - with the exception of one, who put her hand on mine and told me that she was an oncology nurse for years, and if I need help with anything, she is here. They are trying to get our original oncologist in, who is affiliated with the hospital (our current one may not be - we'll find out tomorrow). The worst of it all though, is that Rock seems to have lost hope - he took Nick up on his bed with him tonight and did what he could to say a goodbye without upsetting him too much. So the most difficult question of all is, how do you comfort your 12 year old son who knows he has the best dad in the world? How can we even know if our daughter with autism will understand why dad isn't here anymore?
Please join me in praying that what I am writing here is just drama, or an over active imagination.
Jeanette on 06.17.07 @ 10:53 PM PST [link]
Midnight Run
It was midnight Friday night when Jeanette came to bed. That’s when I announced that I was having a lot of trouble breathing and we probably should find an emergency room. I have been struggling with a shortness of breath for some time but this seemed different. I was scared that if I fell asleep I may not wake up.
So we called my brother to cover the kids and we headed off to San Ramon Medical Center. They checked me in and ran a few blood tests, ran a chest x-ray, a chest CT scan, put me on oxygen and had me on observation for around 5 hours. It seemed that the oxygen was key as it helped by blood oxegyn level get into the 90’s which is normal. The x-ray was a slap of reality as it showed much of my lungs covered in tumors. Anyway. they sent us home at about 5am with an inhaler and promised to work on an order for home oxygen tank.
Last night I began to have the same sensations. I was coughing contiuously and unable to take a deep breath. From Midnight until 4am I stayed up watching TV hoping to make it until morning. Whenever I tell my mom I was up at 4am for some health reason, she always says, “You should have called me, I was up.” So I made the call and got my dad. He brought me down. This time, they suspect pneumonia or fluid build up that happened during surgery this week.
So now I am sitting in room #215 at San Ramon Regional Medical Center spending a couple days on antibiotics, oxygen and plenty of bed rest to see if we can beat this back and hopefully I will breath easy again.
Doug on 06.17.07 @ 12:14 PM PST [link]
Thursday, June 14th
Home and Happy
Jeanette just came and got me this morning and took me home. Though we are a little toasty around here, it is so nice to be out of the hospital and in my own house. In back-to-back weeks, I couldn’t help but draw a comparison between my 3 nights at Sonoma Mission Inn and the 3 nights at Eden Medical Center. Talk about your pleasure and pain contrasts! Still, the neurosurgery top floor at Eden is top of the line. I had a really nice room in ICU and was treated like a king. Then I was moved to a private room these last two nights in recovery just down the hall. All went well. The surgeon is happy with his work though I have lost my voice. Hopefully this will recover as swelling and bruising subside.
My one complaint for this hospital stay and others is the food. If we “all” agree that our health begins with our diet, why is it hospitals have the worst food? Since the kitchen is all setup and they have to put meals together anyway, would it take much more to lift the quality a little? Maybe some more fresh vegetables, fruit, decent spices, etc. I have enjoyed better cuisine on middle school campuses.
So I am fairly comfortable, able to walk around, eat solid foods, sit up, etc. I am on a pain pill that helps. Much of my discomfort is in the back of the neck where they had to move some things around for surgery. I have a 2 to 3 inch cut in the front and a 4 inch cut down the vertebra in the back. Both sit just below the collar. I am guessing those big neck bolts that protrude from the side will get installed later?
Doug on 06.14.07 @ 11:18 AM PST [link]
Wednesday, June 13th
Out of ICU
Rock/Doug was moved out of ICU yesterday afternoon after the thumbs up from his surgeon. He will be at Eden (room 6202) at least through tonight (Wednesday). The surgeon said the surgery went extremely well - he removed a very large tumor from the front of the damaged area in addition to replacing the vertebrae. Blood loss was a huge concern, as tumors tend to feed off of blood vessels, therefore they continuously bleed if disturbed. The surgeon wouldn't have been able to apply pressure on the tumor to limit bleeding because it was on the spine - he would have had to work around the bleeding, possibly needing transfusions. Thanks to Dr. Noharu, who did that AM procedure to stop blood flow from the vessels before the surgery, there was less than a quarter cup of blood loss!
Rock is in good spirits, although a little groggy from the pain medication. He sat up yesterday and is scheduled to begin some physical therapy today (he is NOT looking forward to that - his neck is in a lot of pain, especially when he moves). His vocal chords aren't completely normal yet, as they had to move them aside for the operation - he is a little hoarse but able to speak. He needs to be able to do an alto-soprano note before leaving.
That's the news! Hopefully he'll be back in his own bed before the end of the week.
Jeanette on 06.13.07 @ 07:20 AM PST [link]
Tuesday, June 12th
Made it!
Rock was awake, alert and cracking jokes last night! He's in a big neck brace and can barely move, but at that point there wasn't much pain, which is great. Through all this he has never lost his sense of humor, which has made it easier for all of us - he's already giving the nurses a hard time. I forgot his iPod headphones and he was threatening to sneak into the room next door and "steal some from the old lady".
Jeanette on 06.12.07 @ 07:14 AM PST [link]
Monday, June 11th
Side Two
5:30 update, Monday
It's a small world! Our ICU nurse, Kim, is the sister of one of Nick's teachers at Stone Valley. At 4:30 I got a call from (Karen) Nick's teacher, saying that Kim (nurse) was looking for my cell number, and was it OK if she gave it out. What is it about hospitals that you seem to answer the same question until you want to blurt out "You should have it memorized by now!!", and then they can't find the information when they need it... Anyway the point, and I do have one, is that she called to update me.
The surgery actually started at 1:30, an hour later than expected. It was going swimmingly at 4:30, and they were just turning him over to start side two. The surgery should be over at about 7:30 or 8, and then an hour in recovery, then on to the ICU. Not sure if he will be coherent when he comes to or not - but the good news is that the surgery is going well.
Thank you to all that have called and emailed to wish us well - as usual we are overwhelmed!
Jeanette on 06.11.07 @ 05:43 PM PST [link]
So Far So Good!
A mid-day update from Jeanette -
Rock (AKA Doug) had his first pre-op procedure at 8AM this morning. The procedure was done by a neuro oncologist who was to seek out and cut off flow from the feeders to his tumors in order to limit any bleeding during the following surgery. We both became not just a little nervous about this on the way to the operating room, as the doctor was giving the disclaimers such as possibility of stroke, having to 'take the artery' and such. Even though they stressed very slight chances, Rock and I practically don't listen to statistics anymore (less than 1 in 100,000 girls were diagnosed with autism at the time ours was, and how likely is it that a 45 year old athletic non-smoking wannabe vegetarian with no family history would come down with colon cancer...). He went in at 8, out at 10- with a glowing report from the doctor that all went very well, and even better than expected in some aspects. He was groggy but looking fabulous in his hospital gown, booties and shower cap (if it's not water proof is it a do-rag?).
At 12:30 they carted him in to 'the big one' - if all goes well, it will be a 5-6 hour operation. The surgeon is hoping to complete what he calls a "360" today. If there is too much bleeding or Rock becomes unstable, they will just do the front half today and continue tomorrow AM. This is where we try not to dwell on that recent episode of Grey's anatomy about George O'Malley's dad - the tumor, the cancer - oy!
4PM, and still in the operating room - this is probably good news that they have continued to side 2. I'll keep you posted.
Jeanette on 06.11.07 @ 02:56 PM PST [link]
Friday, June 8th
The Nail Meets the Hammer
Yesterday Jeanette and I met with another Neurosurgeon. Near the beginning of this search I had called Dr. Michael Wynn in San Ramon. He had performed my colon and port surgeries and his work was so impressive that I thought he might know the top neurosurgeons in the area. He didn’t hesitate to recommend the Dr. Randall and Dr. Dickinson at Pacific Brain and Spine - www.pacbrain.com. Thursday Jeanette and I got a chance to meet with Dr. Dickinson and go over my condition.
The doctor took his time to learn some of my medical history and then looked at the films that we had brought. There was no hesitation in his recommendation. Much like our first opinion, his recommendation is to completely replace the C7 vertebrae as soon as possible. He took the time to go into detail about his concerns for the surgery and how he would expect the process to take place. Working at the front of the neck initially, he would remove the bone and replace it with a polymer and then attach it to the vertebrae above and below with a plate and screws. If everything went well and there was not too much blood loss, I would be rolled over and a similar process would take the rest of the bone from the back of the neck. Another replacement part and more plates would be put in to reinforce this area as well.
Apparently tumors in the bone area have a tendency to be very bloody during surgery and heavy blood loss is one of the doctor’s major concerns. If this occurs the surgery will be split into two days. Naturally, working around the spinal column, major arteries and nerves that control my arms and legs are a given risk in this procedure as well.
From Dr. Dickinson’s explanations and actions, it was obvious that he is very confident and strong in his work, “specializing in the exotic.” It is good to have a cocky brain surgeon, right? Eden Medical Center in Castro Valley www.edenmedcenter.org has a new high-end neurosurgery facility that is his domain. What was surprising to us was how quickly he worked to set up the surgery. In minutes of the decision to move forward, he had me scheduled that day for blood lab work, x-rays, and a CT scan. And the surgery is now calendared for THIS Monday morning! I will check in at 6am for a procedure to try and block some of the blood flow to the vertebrae tumor and then full on surgery around noon.
Feeling confident that we picked the best surgeon and the best facility, I’m convinced that it is better to do this sooner vs later. Something this scary is not what I want to dwell on for too many days. Though surgery is always a risk, I think I am mostly worried about recovery. It looks like I will be in some pain for a while and laid up for about six weeks. I have spent a week in a hospital on two occasions and those both drove me crazy. I am also not the best of company while on narcotic painkillers. So please pray for my caregivers, and me. Wish us luck and send good energy my way on Monday.
Jeanette has offered to post our status and updates to the blog while I am out of commission.
Doug on 06.08.07 @ 06:31 AM PST [link]
Thursday, June 7th
The Lap of Luxury
I am not sure where that saying comes from. My buddy Ellen is best at discovering those tidbits. But if you need a definition, Sonoma Mission Inn and Spa would certainly qualify. What a beautiful four days and three nights here in Sonoma. Jeanette’s reward trip not only included a fireplace suite but cash to spend on meals and wine.
We took the TT convertible all around the valley targeting some select wineries as far north as Healdsburg. We also enjoyed a couple of spa treatments and hospitality of the resort. We found some great dinner restaurants around the square in town and had lunches in beautiful gardens at the wineries.
Removed from work and the kids for a few days is a real treat. You get to a level of relaxation that you had forgotten existed. And to be able to do it in high style with no worries is truly a gift. I couldn’t stop thanking Jeanette for her hard work that earned us a great break together.
Big thanks to our sister in-law Colleen and friends Helen and Terry for stepping into our shoes at the house. No easy task to get the kids together and settled for the evening and out the door in the mornings.
Doug on 06.07.07 @ 09:28 AM PST [link]
Saturday, June 2nd
A Retreat After All
Jeanette and I were supposed to be gone this week enjoying ourselves in Vienna, Austria. I am not too disappointed not to be traveling overseas for the sixth time in as many months but spending quality time together in the city where we started out relationship would have been something special.
So as a consolation, we are going away for three nights. Jeanette won a trip as a work reward and one of the options was a spa retreat at the Sonoma Mission Inn. From Monday afternoon until Thursday, we will get to lounge around enjoying the spa and surrounding wine country. Sounds perfect to me
As things start to get crazy for me with my health, Jeanette and I realize more and more how valuable our time is together. It is amazing how seldom we really are “together” as a couple when spending our days raising children. We have at least 4 good couple friends whose kids are graduating from high school this month. As the kids get ready to head to college and out of the house, it seems that the cycle is set for a couple to rediscover why they were together in the first place. When we had the chance to be spontaneous and free, it sure was easier. I understand that our kid workload is a little higher than most, but life just seems to get so serious when you are raising kids. We never seem to make an effort to get a regular babysitter going. So I envy those who have set aside one night a week or two nights a month as a “date night.”
Our kids aren’t graduating and leaving the nest but we are renewing efforts to spend quality time together and find a little more fun in life. Maybe a few more vacations, maybe a few more dates, maybe a few more movie matinees are in our future.
Doug on 06.02.07 @ 04:28 PM PST [link]
Past Posts
I had an appointment with my oncologist today. Dr. Tracy and her nurse went over the process of me starting the oral form of 5FU called Xoleda. Fluorouracil, or 5FU is the most common chemo drug for colon cancer and is also used for breast cancer and others. This was the drug that I had to be literally connected to for three days, as I carried and slept with an IV bag and a slow battery operated pump that pushed the drug into the port in my chest. I blamed this one for many of the side effects and drop in my immune system. Xoleda promises to be easier on me and this doctor seems more flexible in decreasing dosage or taking a break if my body has trouble. The one side effect that seems to be a big concern is hand and foot syndrone where your palms and feet get red and cracked. I will be using a prescription cream three times a day for prevention and healing. Lets hope that is the worst of it.