True Blue (Tarp, that is...)

Another camping adventure—NW style—a little overcast, some rain, a nice blue tarp and a big, big fire. It's not supposed to be quite so wet in Sequim, but that's OK. On Saturday, we enjoyed some wine tasting at the Olympic Cellars Harvest Party and Grape Stomp, bought wine and had two great days of camping. A good late-summer adventure, and Jamie was doing great.

Belgian waffles for breakfast...

A proper fire—John's style. Shorty hangin' in the trailer. The best dog ever!

Third Time is a Charm

So I guess the world is waiting to see how things turned out.

Shortly before noon, our day nurse began to set things up to access Jamie’s abdominal port and get things rolling. After three attempts, and with the help of our now favorite chemo nurse Christie, they got the needle set and flushed the port for the first time with a little saline. Over the next few hours Jamie took on three liters of fluid to her abdomen, along with plenty more via standard IV (chest port).

The whole shaking table was a cancer myth, but once the chemo portion of the infusion was done, Jamie spent the next two hours changing positions, head up / feet up / roll right / roll left, at 15 minute intervals.

While running an errand between turns, I had the opportunity to speak with nurse Michael. He seemed genuinely happy to see me and made absolutely no mention of the sushi-vomit episode. He accompanied me back to the room and he and Jamie caught up a bit, Michael sharing a few tidbits from his female companion’s cancer experience and how she made best use of being bald at Halloween.

Note; Michael actually uses the term “partner” to describe this woman, but I used the above phrase for the benefit of our more rural constituency who might interpret this to mean “gay” which Michael obviously is not.

Anyway, Michael is just one of the many genuinely caring people who have helped us at UWMC. I saw him again in the hall as I ferried our personal effects to the car and he was returning from the family lounge. Michael had washed one of his patient’s clothes because he was a transient with no family or friends to assist him. I am touched by how these people who are already doing a demanding and often unpleasant job, go even further to bring comfort to their patients.

We got things wrapped up a little after 4 pm, and stopped by to informally check out with Christie who was charge nurse for the day. Among other gossip we were sad to here that May is no longer at UWMC, as she moved to NY shortly after her wedding this summer. We wish her the best and can not thank her enough for her efforts. I just hope that she somehow gets word about Jamie’s recovery and knows what an important role she has played.

So from UWMC, it is just a couple of minutes to the Silver Cloud, our favorite cancer vacation hotel. I got Jamie settled in, truck unloaded and headed out for a quick ride on the Burke-Gilman trail towards Fremont. Although I did not encounter any nude cyclists, I did see many other intriguing things, a Vespa shop, the Hales brewery, and a score of other interesting business, construction sites and parks.

By the time I got back to the room, I had just a few minutes to relax before Joel, Katrina, Madeline and Erik arrived. The kids were fascinated by my bike, which was parked in the room and so soon Katrina was wiping chain oil off of Erik’s hands and face. For now he is harmless, but his obvious lust for the mechanical will make him a threat once he learns that you can tear anything down with an adjustable wrench and pliers.

We ordered pizza online from Zeeks and then Joel, Madeline and I set out to buy some beverages. Despite her generally adventuresome persona, Madeline has obviously been scarred by our past outings and whined for her mother for a good 15 minutes. Once she became confident that she would not be forced to operate heavy equipment or engage in some other frightening activity, she regained her confidence and soon was running up and down the aisles of QFC.

After dinner Katrina left us with some candy sushi and great cookies, so after I did some sampling we settled into bed for a restful night’s sleep without residents and nurses. We both slept well and come morning I was refreshed. I ate the free breakfast and then returned to the room with a waffle for Jamie. She ate it all, but was still sleepy, so I let her go back to bed for a bit. I went out on my bike again, exploring a bit more then stopped at the Metropolitan Market to fulfill Jamie’s request for fruit.

The ride home was uneventful, Jamie slept most of the way home and then unloaded and went straight to bed. Despite some prior discussion about a delay in symptoms because of the absorption rate of the IP chemo, she is on the same “schedule” as the previous regiment. Both the remainder of yesterday, through the night and today have been spent sleeping, with only short breaks to eat, take meds and have a little conversation with me.

Tomorrow I made her promise we would go to Starbucks and lunch, and hopefully we will turn the corner for the week. As much as I hate to see her suffer, I think we were encouraged by last weeks CT scan results and feel positive about pushing forward.

Shorty has been at my parents’ house since Saturday and apparently has made no indication of wanting to return home. I am sure he is enjoying company of Sammy and Stella as well as a few extra “cookies”.

Thanks to both Jen, Katelyn and the Healy’s for taking care of GB and BB. I also want to thank Joan specifically for helping with Jamie’s injection last night. Although capable, the task is still a great effort for me and so her professional touch is always appreciated by myself, but probably even more by my patient.

IP No. 1

It is a little eerie or maybe just surreal checking into the hospital under these conditions. You go to admitting, sign a couple of pieces of paperwork and then under her own power Jamie takes the regular elevator to 7SE. When we get to the room she plops on the bed and idly chats with the nurse and med student as they get things rolling.

Being back here brings clarity to my memories of our first day here, Jamie in agony as they try to gingerly transport her on her bed from recovery. Residents and nurses were hustling around our room, trying to control her pain and keep her vitals under close watch. Jamie was unable to even adjust her position in bed.

As we sat and waited for the first chemo orders to go through yesterday, Jamie, stretched out on the bed asked me to look for something in the closet. Somehow the circumstances had temporarily debilitated her until I pointed out that she was not hooked to any machine and she was more than physically capable or reaching her goal. We both burst out laughing.

Like all intense experiences, the people and places become very attached to you and so coming back gives you that sort of reunion feeling. Our nurse for this first day was Christie, who gave us our pre surgery tour and was of course here during Jamie’s recovery. Christie represents what I like most about the nursing staff here; they are young, energetic and see very much like one of “us”. Christie is also a world traveler and outdoorswoman, so there is always subject for chat when she has time.

We are here for just one night and two days. Jamie is starting her second treatment phase which is “IP” chemo. This starts with a very slow 20 hour infusion of standard IV chemo via here chest port, followed by the literal flooding of her abdomen the next day through her stomach port. There are lots of little IV bags tossed in as well, hydration, anti nausea and other support drugs, so Jamie has become very adept at visiting the loo with her IV pole in tow.

This morning our nurse is Karla, a new face to us, but obviously a veteran here on 7SE. Dr. Goff has already been here as well both days, making sure things are going per plan.

I am back into my old habits already, bike riding the Burke-Gilman trail, visiting the cafeteria and hanging out in the family lounge on then 8th floor. Today I spoke in depth to a friend I made last May who is here from Alaska with her adult son. Unfortunately their 8 year battle is coming to a close as death, and finally relief from suffering, is certain for Tom any day now. I really enjoy this woman’s company as she is both wiling to talk about her cancer experience but somehow can intermingle details about life and family that shed a positive light. Her son’s struggle brings our current situation in perspective, and shows that you can cope with what looks from the outside to be the most dark and bleak circumstances.

During this morning’s visit we both discussed our new discovery of the midnight snack cart which roves from the ER and then through the various floors feeding staff and guests alike. I had seen a schedule posted in the cafeteria at lunch time, so around 10 pm last night I returned to the bulletin board to refresh my memory before tracking it down. I found my way to the 6th floor in the Pacific Tower, where another visitor and a nurse were patiently waiting. I watched them begin to salivate like hungry dogs as we heard the cart rattle against the elevator car on it’s way up.

The doors parted and we were in awe (you only understand this if you have spent a few restless nights here) of this massive conglomeration of semi fresh foods, drinks and desserts that rolled out. I waited patiently for the first two to make there selections when a frantic looking man appeared from one of the closed off wards. I knew we were in some sort of birthing or maternity ward from all the screaming and crying I heard. This man reached into the cooler and pulled out what I instantly recognized as a Vietnamese sandwich, but he was perplexed. As both the cart tender and I tried to explain what it was, and of course I was giving a hearty endorsement, he blurted out “I just had a baby and need a sandwich”. He then swapped it for a more conventional model and swiftly was on his way. I was eager to pick up his first option, and at a substantial discount from my earlier one at lunch, enjoyed my favorite late night snack. Dung would be so pleased as every night in Vietnam he would send me to bed with a sack of no less than four sandwiches, which apparently his own personal standard of consumption.

This morning is another beautiful fall day in September our room looks out towards the Mountlake cut and 520. Both the Cascades and Olympics are in clear view of here and it is readily apparent why so many people relocate to this area. Jamie is a bit grumpy this morning, as the nightly routine of continuous nurse traffic and IV alarms, which never coincide, leaves you with but a few winks at a time. Just when you finally become exhausted and the quiet of the end of the nurses shift seems to be allowing you a couple interrupted hours, the over eager residents pop in. I am sure they are just ambitious, trying to stay ahead of their mentor, but I was less than pleased by their appearance today.

July is when the rotation starts, so unlike our last group which were by May seasoned professionals, this shy group of school girls looked like they might scamper out like bunnies if you made too sudden of a movement. Yesterday I thought the med student (lowest in rank) who was interviewing Jamie was going to shatter into pieces like glass when the nurse asked her if she was the nutritionist. But they are all polite, appear intelligent and I am sure will flourish professionally, especially under the tutelage of such great persons as Dr. Goff.

So there is no rush today, just leisurely chemo and then a night at the Silver Cloud in the U district. Unsure about how long it would take, how Jamie would feel and what her level of hydration would be, we did not want to be committed to traveling home. Being released early would be of greater risk than being late, as I could imagine my own mental state as we negotiated rush hour traffic through Seattle and then Tacoma with Jamie bloated with an extra 4 liters of fluid in her.

Good Report

Today marks another milestone in Jamie's recovery. After taking six aggressive rounds of chemotherapy, she had a CT scan today to see how her body was responding. According to Dr. Goff the results were reassuring with significant reduction in size for all lympths previously marked as abnormal and no sign of new masses or other unusual growth.

This gives us the all clear to move ahead with the IP chemo which starts this Sunday at the UWMC. This is an inpatient procedure, starting late AM Sunday through the afternoon the next day, so I imagine I will have time to both research and write again on the behind the scenes drama of 7 SE. After watching several episodes of Grey's anatomy during Jamie's recuperation, I now have a better idea of what to look out for.

Summer has flown by, consumed by work, trips to Seattle and as Jamie's strength returns more and more fun. Ironically traveling to Seattle for appointments is one of the least stressful things in our lives. We have mastered (or at least overcome) mass transit from Tacoma to Seattle, eaten many Vietnamese sandwiches, racked up scores of points at the Silver Cloud Hotel, tried and rejected the Marriott, done a little bicycle shopping, visited friends and received great care from all the staff at the SCCA.

Last weekend was our aniversery (#11) and many of you heard of our ambitious plans to hike to Lake of the Angels. Well despite our success at Dosewallips, Jamie did have a few side effects the following week, and thus we opted for a luxury weekend in our favorite urban getaway, Portland.

Jamie booked the Hilton in lieu of our standard favorite the Westin because it had a pool. When we arrived at the main complex in our 4x4 truck we were diverted into the Executive Tower where the garage did not have as severe height restriction. This worked out well because despite the claim that the Hotel was booked to the max, it was for the most part quiet and pleasant as it appeared that all the Prius drivers and noisy families were in the main hotel down the block.

For dinner we opted for something new as well, and I booked the Ringside, touted as Portland's best steak house. I was further encouraged by the fact that I had limited options when I called for a reservation, and thus we were set for a 5 pm dinner (after 11 years no sense in dragging it out, we could dine, drink and still be back for a reasonable bedtime).

As we drove up in the cab, all seemed well, good neighborhood, nice brick exterior. As we entered, the ambiance was perfect for a nice dinner and the captain seemed both genuine and professional. We were seated and soon introduced to our wait staff.

Our waitress was a stout sort of brusque woman with a butch haircut. She strongly recommended their onion rings for an appetizer, which she claimed they were famous for. I restrained myself from responding with "only if you also have mini corndogs and cheese whiz" and politely asked what brands of good bourbon did they have at the bar. She said “what do you call good bourbon" demonstrating either her ignorance or lack of interest. Knowing that I needed to take control or possibly face a glass Old Granddad, I asked for Nob Creek on the rocks.

We ordered an appetizer, not worth describing, and despite our waitress’s pushy approach ordered salad as well before committing to our main course. Recollecting our gluttony at El Goucho last year and the subsequent indigestion we did our ever more frequent 50/50 approach where I ordered a lobster and the asparagus while Jamie selected the fillet and potato, intent on sharing each equally. The lobster was adequate, but the steak was truck stop grade. We ate leisurely which must have really set our waitress off. Once we made the slightest gesture that we might be finished she quickly cleared the table and returned with a “complimentary” desert rivaled only by a sundae I once ate at the Harbor Landing as a child. No desert menu, no after dinner drink, coffee, nothing. Just finish you f%&#ing free ice cream and here is the check. She was however kind enough to ask the captain to call for a cab, which came so fast that I am convinced that they just keep one on standby to help keep their tables turning.

Portland however redeemed itself, for after a long day of bicycle accessory shopping (there is no sales tax you know) we stumbled onto the Windmere Brothers Brewery and dropped in. Despite being pretty busy I used our sob anniversary dinner story to gain the waiter’s sympathy (he said the service at the Ringside was terrible) and we had a good pub dinner with appetizers (and no we were not offered onion rings), a few pints for me (one was on the house) and a better desert for 1/3 the price of the prior night even with a huge tip. I ate the pork schnitzel (pretty fancy word for a breaded pork chop I found out) and a pasta side which I can only compare to that of my mother’s home made mac and cheese. Jamie had an excellent pulled pork sandwich and salad, not the big sloppy fair kind, but the soft Kaiser roll bun piled high tender pork with perfect BBQ sauce on top.

So I guess we are off the fancy food and back on the pub circuit.

Happy Trails

Excellent hike along the Dosewallips River this past weekend with the Crases. Great weather, fabulous company and a beautiful setting. It was very relaxing with the sound of the river lulling us to sleep at night, and Jamie even slept in on Saturday morning until about 8:30. The only negative of the site was the mosquitos, but once John got a fire going the pesky bugs left us alone. Seems like this trail was a good practice run for Jamie and John's next hike. Here are some photos...

John & Jamie hit the trail!

Saturday Morning Campfire

Don't mess with Jamie and Erik!

Yeah, OK, so they look more feisty than menacing...

10's a Magic Number

Well, I didn't break double digits, but my CA-125 is down to 10!! I was pretty elated and Heidi my nurse was very excited too. She said she didn't expect it to get that low.

For IP chemo the number will fluctuate as the proteins are moving around in my abdomen. So I'm supposed to expect that the levels will go up. I'm glad she told me, otherwise I might have been worried.

Physical therapy is going well and I got my first pair of compression stockings(the panty hose type) today. We're going hiking this weekend for an overnighter, so it should be interesting trying to put on the stockings in the tent. I'm sure you all get the picture. In my head I'm laughing hysterically.

Yippee Ki Yay!

Hooray! As of Friday, August 17th, Jamie's all done with her first round of chemo!!

She gets a break until September 9th when IP chemo starts, and will post her latest (steadily dropping) CA-125 numbers when she gets them.

Yee Haw! "Praise the Lord and pass the ammunition."

Super Woman

Okay, not to toot my own horn again, but I was told yesterday that I am super stud (my interpretation). I guess that I am somewhat of an anomaly at SCCA. Of those they have put on the protocol study, only two people have been able to make it through. Me being one!! Dr. Goff said I was doing remarkably well and feels like my IP chemo will also go well.

She warned me that it's 20 hours of Taxol followed by a couple of hours of Cisplatin (different from the carbo I am getting now) followed by shaking in the bed and rolling over and lots of bathroom breaks. All told I should be at UW for about 36 hours. She plans on giving me 4-6 courses of IP, which she is pretty confident I will be able to take all six, three weeks apart. She said she didn't want to kid me, it will be tough, but what she has seen me do this round, she's pretty sure I will make it.

Heidi, the nurse extraordinaire, also said I was a power woman and tooted my horn some more. She said I looked great, and had a great attitude. I hear it from all of you who comment, but it is nice to hear from someone totally objective too. All in all, yesterday was a pretty big ego boost for me. Even with the joint pain, I left Seattle feeling pretty elated and promptly came home and went for a swim!

New Numbers

Not to overshadow the previous post, but the physical therapist today let me sneak a peek at my CA-125 number it was 16!!! (this is prior to chemo #5)

I met with the physical therapist for my lymphedema, which has retreated with the cooler weather and my swims at the pool. She was so excited that I was a swimmer and felt well enough to swim at the pool. I can honestly say, I notice marked results when I swim, so I will be keeping that up. She also taught John some massage type technique to help with scar tissue around all my incisions, especially the groin area where I had the most trauma. He could feel a difference in just a few minutes of manipulation. It will help to spread the fluid away from the scar tissue and distribute it throughout my body. Next session we will learn some massage techniques. I think we will continue to take our flexible appointments up at SCCA until we feel confident enough with the plan to move down here to another therapist.

Wednesday is a big day as well. We see Dr. Goff for the first time post surgery. I'm excited to hear what she has to say about my progress and pester her with questions about IP chemo as well. I start IP on the 9th of September at the UW. I really do not know what to expect of how it's going to effect me. It will just be nice to get a baseline of where she thinks I am. She is the boss!!

We are trying to plan some hikes after my last round of chemo. A short overnighter with the Wood clan and a longer hike into the Olympics, possibly with the Mills, or maybe alone if it doesn't work out. I think John is determined to make things normal. The Olympic hike would be over our 11th anniversary...what a way to celebrate!!

Less Than 21

Had dinner and cake with Jamie and John Friday night after chemo #5, and Jamie's CA125 level was 21 before chemo #4. She's only got one more to go! Then IP chemo follows. The two weekends between this initial 6-session chemo round, and IP chemo she'll be hiking. As always, it was great to hang out with them! Jamie and I are betting that her CA125 level was around 9 before #5 on Friday, and will hopefully be something very near zero before #6.

Here's to Jamie's CA125 levels being in the normal range of 0-35...and continuing to plummet!

Campin' Out

Just like any other summer...camping with Jamie and John is always a great time. Well, and we always love to see Shorty too! We've camped, travelled, hiked and co-habitated with them enough that we are a great team in any situation, but especially on the road. It was a pleasure to lunch with them at their trailer Saturday, have such efficient help with organizing and "tidying up" around camp, and cook breakfast under the trees with Jamie on Sunday morning. An enjoyable and relaxing weekend at Tolt MacDonald campground, and we look forward to hiking later in the season!