Wednesday, June 27, 2007

Baldy

Well it's official. I am losing my hair in a huge way. John is taking me tonight to get it shaved. It hurts as it's falling out, so I think it will be for the best.

I think I am pretty much over the chemo downslide. I have been up since 12am this morning, despite having taken two sleeping pills, with one short hour long nap between 5am and 6am. I'm not sure how many times one person can watch Pride and Prejudice, but I think I may be setting a record. It's usually my go to movie to put me right to sleep, but for some reason, it's not working.

Anne visited yesterday, brought me so cute sun hats and lunch. We went for a healthy walk around the neighborhood, I can't believe how tired I get. It is nice to get out. John took me to the wetlands park in our neighborhood today, and we met a neighbor who is working on their old house, by way of Shorty running away. Kenny came over in the afternoon and I did one work thing. Best to ease into working again I guess.

Matthew, Lisa, Kelson, and Mackenzie Mills came over for an afternoon, early evening visit and made a delicious dinner. Homemade mash potatoes are the best at 3am!! It was great to see everyone and have a little visit. We even got to eat dessert on the new picnic table assembled by John and Pete on Sunday (the frame was courtesy of Joel and Katrina).

Monday, June 25, 2007

Post Chemo Update

Just a quick update post chemo. Things are progressing as many said they would. I am losing my hair in smallish clumps, not really noticable, but none the less it is falling out. I am still a bit on the chemo downhill, with Sunday being my worst day so far. Pretty much had to lay around and moan for that one. Today has been slightly better, but the muscle aches I could do without.

Don and Judy Mills visited today and brought tomato soup and grilled cheese sandwiches for lunch. It was very nice to visit and kind of them to bring me provisions! They brought us tales of all the happenings on Vaughn bay. It was fun to catch up. Tomorrow we will meet with the younger Mills clan on their way back from the ocean. Can't wait.

Thanks to all who comment. I love reading and re-reading to lift my spirits. I love you all

Friday, June 22, 2007

Ported

We seem to be settling into our routine. It is surprising how such adverse circumstances become normalized and you just sort of meld them into your life. We already are scheduling both our personal and professional lives using the term “chemo week” and “non chemo week”.

So here we are, it is chemo week and we left with our full outfit about noon yesterday for Seattle. First a blood draw at the lab on floor (1) and then up to the 3rd for our bi weekly consult. The nurse practitioner had a spill while jogging that AM, but our regular RN Heidi filled in.

I always enjoy our visits with Heidi, she has a warm, chatty personality that seems to make you comfortable while still making sure the appointment is productive and not over length. Estrogen was a major topic, both for Jamie’s health as well as my sanity. We will be making some adjustments, switching from the patch (which I call the “crazy patch”) to daily pill form. All of our other concerns were swiftly addressed as well, and we left with a cadre of instructions and a list of other medications to pick up the following day.

The Silver Cloud has become our hotel of choice, as they have properties close to both UWMC and the SCCA on Eastlake. We arrived a little after 3 pm, to find the lobby in a bit of chaos as the reception staff was trying to check in a herd of touristy looking types while coping with a cleaning staff that was behind schedule.

I waited in line patiently, and when I finally made my way to the front, I began to carefully relay my concerns about my reservation.

Three nights ago I had called the reservation hotline armed with my Silver Rewards Card to cash in my bonus points for a free room. Despite her cordial manners, the woman on the other end was unable to confirm that I had enough points. Disappointed, but tamed by my caner spouse experience, I figured I could reconcile this later and asked for a room at the SCCA or UWMC rate. She said this offer was “closed” and that I could not get a discounted booking. Undaunted, I accepted the standard rate and jotted down my confirmation number.

Well about half way through relaying this to the very patient counter staff at the Hotel in person, one of the previously mentioned tourist herd walked up and said “can I interrupt, I just have a quick question?”. Before I could even think, little alone say “f%$& you, how about I just kick you in the balls instead”. He began rambling on about since they were waiting would it be faster if unloaded his luggage onto a cart and brought his luggage into the lobby and then went up the elevator from the lobby, or should he just wait until the room was ready, gather a cart and use the elevator tower in the parking garage. Sensing my disgust (probably the death stare I was giving this guy) the counterwoman tried to be brief and said he could bring his stuff into the lobby if he wished, that two of his rooms just came available, to which he replied something like “that seems like a lot of bother I think I will just wait in the lobby for the rooms all to be ready”.

Now that I rightfully had this woman’s attention again, she confirmed that I only had 400 points showing in the computer and that neither of the discounted rates I requested were available. She did however offer me the corporate rate, which seemed satisfactory and began to assign me a standard king room. As she did so she said that it would not be, ready for an hour (due to the delays described above), which I responded to her with “when is check in?”. She confirmed what I already knew which was that check in was after 3 pm and it was nearly 3:45 now. Unwilling to wait the estimated hour, citing my wife’s need to lie down and rest, she offered me a double queen room (apparently an upgrade) at the same rate.

I accepted room 511 which had an excellent view of Lake Union. Our neighbors Joan and Leo had recently recounted their past stay at the same hotel for a previous 4th of July. Certainly with the view and the spaciousness of room, it would be an ideal spot to view Seattle’s firework display.

With dinner on our minds, I got our luggage in order and left Jamie to seek some take out. I drove around the end of the lake, spotting nothing of interest, so I turned around in the Kenmore air parking lot and headed back towards the SCCA. After wandering a couple of blocks I recalled an Irish pub I had seen on a past trip to the neighborhood, scrolled through the addresses stored on the truck’s navigation and found the entry that had originally guided me to that same block some weeks before.

I parked at the curb and walked into the pub, taking the first available stool at the bar. Thinking I was trying something new, I scanned the happy hour menu, only to find that it was in fact the original Paddy Coynes, the clone of which I had visited in Tacoma with my sister and Dave just a few months prior.

I placed my order, along with a pint to kill the time and started the typically chatter with the bartender. “Where are you from?” I asked. “Ireland” he replied. “No shit?” I said. I suppose he probably gets this a lot, but I expected a more specific answer, which I eventually got. “County Atrium, where they shoot and blow each other up”. That over with we discussed his most recent trip to Hawaii and his experience diving in the shark cage. Although extremely susceptible to sunburn (he described his head feeling like it was on fire most of the time despite spf 50 sunblock), this particular Irishman has a fascination with sharks and now plans to visit South Africa and / or Australia where he can repeat the experience with great whites.

We left the sharks to discuss his choice of Seattle which eventually lead to his complaints about house prices. I said he should come to Olympia and open a pub down there, where I promised to be his best customer. He said that it would take $300k to start such a venture, to which I responded with some brief math on mean house price in Seattle vs. Olympia, and how with the same $ he could probably afford both for the same net sum in Olympia. Either lost by or uninterested in my scheme, conversation turned to a recent “encounter” with a young woman from Olympia to which I inquired if she shaved her legs. Thinking that this would really narrow the field to just a handful of candidates, he replied with “yes, but not her moustache”.

I returned to the room with a loaf of soda bread, salad and a Shepard’s pie. Although the pub’s conversation was superb, the pie was not and was soon rejected by Jamie. So back on the road again to fulfill her request for much simpler fair, cheeseburger, onion rings and chocolate shake. I had spotted a typical drive-in along Eastlake during our hospital stay, but it was closed, probably for Memorial weekend. Well this time they were open, and I was not disappointed. Dinging interior with quirky cartoons on the wall, accommodating but stoned looking staff, and good greasy food.

Stomachs full, we lounged around watching HGTV and other reality TV shows. I went down to the workout room about 9 to try to burn off some of the grease. I returned to the room to find Jamie still watching shows about stupid people, so I took a shower and prepared for bed. Jamie was restless through the night despite trying a sleeping pill for the first time. Although assured that Friday’s port install would be a breeze, she was still anxious. I slept well slept for a few hours and arose early without an alarm to ensure timely arrival for our 7 am appointment at SCCA radiology.

Our guide for this leg of the journey was Pat, an excellent nurse who gave us a complete (and very accurate) run down of the morning’s procedures. When we mentioned being from Olympia and in the construction industry, she said that her brother was a contractor and of course I recognized him as a Tectonix customer. Although I did my best to like Pat, she was not as accommodating as the infusion staff. In her post Op instructions, she was quite clear that Jamie should not make any important decisions or sign any documents for the rest of the day, explicitly including new diesel pick ups.

After Pat’s review and a couple of attempts at installing IV’s we met the famous Dr. Hickman. He is the primary installer of ports her at the SCCA, so such devices are commonly known around here as a “Hickman”. He began repeating the basics of the port devices and their use with both of us, and then as they completed the IV, he went into greater depth of detail with me on its use and maintenance, ensuring that if the need came outside of the SCCA, I would be able to supervise its access and use. If we travel at all, we will also be issued a couple of spare needles as outlying hospitals may not have them in stock.

For those unfamiliar with this device, it is about the diameter of a quarter and 3/8” tall, with a long tail which is the catheter. It is installed on the chest below the collar bone, but above the breast tissue just beneath the surface. The catheter is routed up towards the next where it travels down the jugular and into the first heart chamber. They select this route because it exits into a high volume of blood ensuring almost instant dilution, thus minimizing the toxic effects of the chemo drugs. The device has a life span of several years and in Jamie’s case her model is compatible for use with any IV fluid including that used for CT scans.

The port access itself is compressed, self healing siliconized rubber. The access needle is a non coring type, with a slight hook to it. As Dr. Hickman demonstrated for me, you simply locate the port center beneath the skin with your fingers and push the needle through the skin into the port until you feel the needle hit the back side of the port. If needed, the area can be numbed a few minutes beforehand with topical anesthetic.

The installation procedure is fairly straightforward with Dr. Hickman selecting his route beforehand using an ultrasound (which he again demonstrated for me). It is all done under local anesthetic along with sedation, much like wisdom tooth removal. Jamie was in and out in under an hour.

After the procedure, Dr. Hickman guided me through the haul into one of the labs where he showed me her chest x-ray. You could clearly see the port outline in the picture as well as the catheter. He also pointed out an obvious gas bubble in intestine and suggested I burp her as soon as possible.

When I met up with her in recovery, Jamie was happily sipping on cans of juice and eating Lorna Dune cookies while chatting with Pat. A bit dizzy still, Pat supplied a wheel chair so we could return to the dressing room.

With an access needle still attached, the whole outfit quadruples in size, as the needle and short tube are covered by a large dressing with a clear window through it. It was obvious that the geometry was not favorable for wearing a bra, so Jamie decided to go Olympia Co-op style for the infusion appointment. This now obvious issue fully explains why I see so many women around here wearing low cut shirts. Who knew that cancer would be so sexy. I will be sure to get Jamie properly outfitted with an assortment of tube tops.

With my laptop and Jamie’s comfort basket already in hand, Pat graciously helped us up to the 5th floor for infusion. After a brief wait we were called to berth 12, not quite as private as room 23, but definitely larger and thus more comfortable.

As promised, Dan is our chemo nurse again, and even though we are on just our second visit, he and I got Jamie settled and things rolling like a well orchestrated ballet. While he handles the medical stuff, I went to the nutrition station and got lunch rolling, pillows out and slippers on her feet.

It’s about 1 o’clock and we are through with the primer drugs and into the Taxol. We have both lunched and Jamie is resting comfortably and looking a bit sleepy. Once all the set up is done, the actual infusion time is quite peaceful and relaxing, giving me time catch up on email, type this and let Jamie catch up on her fashion and decorating tips via the TLC and HGTV networks.

Once we wrap things up here, our routine is east on 520 to Kirkland, apparently one of the only uncongested routes out of the city on Friday afternoon, for relaxation and dinner with the Woods. Once our bellies are full and Jamie is rested we will hit the interstate late evening, hopefully with little or no traffic to slow us down.

I think I have failed to mention that my cookies did arrive from NJ more than a week ago. They scored as follows;

Presentation = 10

Form = 10

Taste = 10

Another fine job Ali, your skills have only improved with age. However there was no bill of lading in the box, how am I going to verify my shipment AJ?

Tuesday, June 19, 2007

Gearing Up

I thought many of you would like an update. I am completely off all the pain meds except tylenol, which has actually made me feel much better. I still have muscle pain, but it is not unbearable. Hopefully this will make my second round of chemo a bit easier to stomach.

John and I will be travelling to SCCA on Thursday for a blood draw and a meeting with a nurse practitioner Barb Silko. We haven't met her yet, but do I have a million questions for her. I have an early appt on Friday for the installation of my port-o-cath, which will make getting chemo and blood draws much easier. It is a permanent line to my vein. It can stay in for many years. My arms are so bruised, it will be a welcome addition. Friday will as be chemo #2!!

John has been like a drill Sargent this week. He expects me to be up and ready for a walk by 11:15. We had to skip the walk today, due to the fact I can't roam far from a bathroom facility. I think the laxative is finally working, maybe a little too well. We sat out in the front yard and watched Shorty run around and scratch his back on the grass. We tried to get him to play fetch, but he was having no part of it. I think he is really missing going to work. Although on days like today, I think he had a good time roaming the yard.

Today we went to an afternoon Tea at our neighbor's house for Kate's graduation. What a wonderful party. It is very exciting to hear of Kate's upcoming trip to Prague and her future enrollment at WSU. I don't feel as if I am getting too old, but when we moved into our house, Kate was in elementary school. John and I had only been married for a couple of years. Hard to believe we will celebrate our 11th anniversary later this summer.

My friend and hairstylist Wendy stopped by yesterday to drop off some frozen meals. Thank you I think I will be eating one tonight. She just had a surgery on Thursday and I'm glad to say everything went A-Okay!! She's one tough cookie!! Thanks for the visit.

This weekend we went to an awesome party thrown by John's parents. Joel and Katrina and the kids also attended after spending Friday evening at our house. As per the usual, there was amazing food, friends and family in attendance. It was a long day for me, but it was good to get out. As John says, "you can't be recluse. You have to get out". He's good about getting me rolling, even when I don't want to roll. I'm looking forward to some more summertime get-to-gethers. I'm sad to say tho, July 3rd won't be one of them. I guess there will not be fireworks at the lake. I'm kinda bummed, but understand that the family who puts on the show, doesn't want to fork out the 25-30 thousand it costs each year. Maybe we will still have to have a party anyway.

I'll let you know how things go on Friday!!

Thursday, June 14, 2007

Brief Update From The Trenches

Jamie's fabulous doctor, Dr. Barbara Goff (photo at left), was featured in the NY Times yesterday (tip from Ali). I thought it was fun to put a face to the name, especially since John describes Goff as a "fiesty red-head"... I love Dr. Goff.

Jamie had tomato soup for lunch today (and a very good time) when she went out with her dad. And her brilliant dad also recently hired a part time gal to help with Jamie's job. This is easing Jamie's mind and lowering Kenny's stress level (he was covering for Jame).

She's also been keeping busy by weaning herself off the really good pain meds (Oxycodone - usually kept under lock and key at the hospital). But, just saying no is allowing her longer stretches of sleep (although maybe fewer technicolor-crazy dreams).

John's Aunt LeaAnne also brightened Jamie's day, and gave her some very good advice and insight today when she visited. LeaAnne just clobbered Inflammatory Breast Cancer herself, and was also on an aggressive 15-day chemo schedule.

Monday, June 11, 2007

Getting Through

Well, sorry I haven't posted for a bit. John was very busy this weekend trying to keep me sane. Chemo is tough. I think I am finally over the rough patch. I have my moments however. To all the people out there who have survived cancer and chemo, I commend you. I have to keep reminding myself that the nausea will only last a few days. And soon enough I won't need to have chemo, because I will have no cancer left.

I have to give a huge thank you to my neighbor Joan, who graciously agreed to give me my shot on Saturday (and she didn't even mention how bad I smelled!) I was dreading it, but it really wasn't bad. I also realized that it cost $2740.20! At least that is what the prescription tag said. I can't even imagine what this whole ordeal would be like if I didn't have great medical insurance.

John has been trying to get a wireless printer network set up at the house. I think the printer we have is not compatible with the router. I think he is trying to get things ready so I can work a little bit from home. He literally spent most of the weekend working on it, except for the times the timer was going off reminding him to dose out one of the many medications I take. It's weird to go from taking one multi-vitamin a day to an around the clock drug regimen. I'm pretty sane, but it is difficult for me to even keep track. John is my rock, keeping me on track and listening to me babble when I am going a little crazy. I have to give the biggest I Love You and Thank You to Him.

I also have to thank the elder Crase's for the portable DVD player. As I can't lay on my side yet, it has come in handy in the bed. It is just the right size and I can enjoy a episode of Sex and the city before I drift off to sleep. I also have to thank Pete and Sharon for the tiny pillow cases for my new wool travel pillow and the drawers for the bathroom. I also have to thank my Mom for finding me some more nightgowns. Thanks Beth for stopping by at lunch to watch me eat some of your wonderful corn chowder and bring me girl movies (as my brother calls them.) I know it's a huge load off John to be able to lean on you all. Thank you from the bottom of my heart.

As for the new do...it has come in handy. Thank you Wendy for giving me such a stylish new do. It is so much easier to take care of and if I don't want to I don't even have to blow it dry. Today John insisted that I take a shower (personal hygiene was not high on my list Sat or Sun, sorry to those who stopped by and had to smell me) today and it was great. I did style my hair just a bit, but promptly fell asleep and have bed head.

Thanks again to everyone who comments. I don't always get to look at them in a timely manner, but I enjoy going back and reading all your kind words. I am looking forward to getting some advice from John's Aunt LeaAnne who just clobbered breast cancer herself. She will be here shortly and plan to get all her coping strategies for chemo.

Saturday, June 9, 2007

A Formidable Force

Friday evening we were treated to Jamie's smiling face, and John's hilarious stories at our dinner table when the Crases made a traffic-break pitstop in Kirkland as they headed back home after the first chemo session. I just have to say that seeing them Friday reminded me again of what a formidable force they are—strong and prepared, with their senses of humor firmly in place.

Jamie looked amazing, even though she claimed to have "bed head" from laying down during treatment. It was wonderful to see her laughing, walking around, and in "civilian" clothes again. And, it was fun to see John's "Jamie comfort amenities" packed in the truck—he takes such wonderful care of her.

Just a quick first-hand account to tide over all the blog-hungry addicts out there (I count myself among you)... until the next missive from one or both of our Dynamic Duo!

Friday, June 8, 2007

First Chemo

I got us packed and on the road by 8:45 this morning. We felt pretty rested now that we are sleeping four hours straight at a time.

It was an easy trip north this morning. Although I assured Jamie that I could navigate by memory at least as far as Seattle, she turned the navigation on as we pulled out of the driveway. It must give her that piece of mind that someone will be chirping at me giving directions even if she nods off for a quick nap.

We arrived at the SCCA with time and spare and got parked. After a brief misdirect to the third floor, we found our way to infusion on the 5th. Once Jamie let the receptionist know this was our first appointment, she happily gave us lots of instruction on where and what to do. She also apologized for things being a bit busy, but hoped we would not be too delayed.

Well they must consider 5 minutes to be a delay here, because we barley sat down and she was calling our name, and pointed us down the hall to room 23.

Jamie and I really did not know what to expect or what the process would be like. Our only frame of reference is that one “Sex in the City” episode where all the girls went with Samantha to one of her chemo sessions. My recollection of that scene is that the patient sat in one of those recliner chairs in an open clinic type setting, with the guests on folding chairs forming a semi circle while they all simulated oral sex on popsicles.

We found room 23 to be a fully enclosed mini hospital room with bed, guest recliner chair and all the other standard hospital accoutrements. Today’s nurse, Daniel, entered eagerly introducing himself and asking us what we knew or wanted to know about today’s agenda. Although I had received and read a fair amount of information on the drugs to be given while we were at the hospital, Jamie was a bit foggy at the time and thus needed a refresher. Daniel was happy to share, giving her a complete run down on the day’s medications, including handouts.

Daniel, a former 7 SE nurse himself, knew many of our caretakers from just weeks ago. This also explains why he was sure to share the Infusion nourishment center policies to me, which to my surprise were described as “liberal” and “open”. He actually encouraged me to visit and feel comfortable looking around and exploring.

Forced to contain myself long enough to help Jamie eat her lunch and get settled with her first IV’s, it felt like Christmas morning when I finally got the opportunity to go down the hall. Out in the open, unencumbered by walls or doors, is a small kitchenette, complete with microwave, refrigerator and cupboards full of tasty snacks and beverages. I returned to #23 to share my news, but found Jamie groggy from her Benadryl and frankly a bit disinterested.

As of 2:15 we are through the preliminary stuff; Zantax, Benadryl and a steroid and now into the first of two chemo drugs; Paclitaxel (Taxol). They started her off at a slow rate, but as there was no adverse reaction in the first hour, she is now sucking it up at full pace. Once we get through then it is on to the Carboplatin (Paraplatin).

Daniel his very outgoing and we soon found that we all had lots in common; guns, dogs, trucks and power tools. Daniel grew up in Sunnyslope, which many know is just a few minutes from where Jamie and I grew up. His family had horses and mules as well as a few head of cattle. Much of his outdoors time was spent in the Olympics, a favorite spot of ours.

During Daniel’s discourse on the medications he was dispensing, he was sure to emphasis those which would impair Jamie’s reasoning skills and thus presented the best opportunity to get approval for a new power tool purchase.

At first we discussed the 24 volt lithium batteried Milwaukee cordless tool set. “Oooh the one at Costco”, he replied. He said that he had the Craftsman 19.6v set and was quite please with the power and felt that the cordless feature greatly improved his efficiency on home projects. I concurred and mentioned my most popular and obvious argument which is safety. With corded tools there is always the chance that you could get tangled up in the cord, wrapping it around your legs and tripping yourself. Or even worse, getting a loop around your neck, slowly strangling yourself. Being a health care professional, he certainly seemed to want to endorse the safety argument, but was frank and said that it was not obvious to him how the strangulation scenario would actually be initiated.

But quick to recognize an opportunity, I am holding out for a GMC Durmax diesel, a comment which of course turned our conversation on trucks. He conferred that the Nissan Titan was a good ½ ton truck, which at the time we both purchased, was definitely superior to the F150, GM 1500 series and of course the Toyota Tundra in terms of power, comfort and available options for the $. His only complaint was fuel mileage, but there is always a price for being cool, and frankly I know that our12 mpg pisses Al Gore off. I wonder if Al drives a Prius around to all these movie promos?

Now more than an hour into the Paclitaxel, and a few trips to the bathroom Jamie is doing ok. I have heard a few complaints about bloating and a little sweating, but it feels hot in here to me as too. Our little room is a bit of a green house, with glass partitions on two sides. From where I sit this affords me a good view of the main hall as well as the nurses’ station. The nurses keep pulling the curtains closed to supposedly to maintain Jamie’s modesty, but I know it to keep me from spying on them.
One other item I need to share before Jamie sends me out on an errand is that all the room and station sinks are foot pedal operated. I told Jamie that I would like to add this feature to our home and she replied “sounds like something Martin would do”. What the hell does that mean? Sorry Martin, but I am not sure that was a complement.

Wednesday, June 6, 2007

On the Road Again

After only one night home together, it seemed too soon to load up and go back to Seattle, but apparently cancer waits for no one. Jamie took her first shower at home this AM using a shower bench I bought for the tub upstairs. I am sure glad we got that finished up this year. I couldn’t imagine her trying to use that dark and dirty unfinished bathroom downstairs we loving refer to as the “construction bathroom”.

As for the shower bench, it wasn’t cheap, so I am going to try to sell time shares. All you guys over 50 should really think hard about it. For $10 buy in plus annual maintenance fees, you could get full benefit of this high quality appliance, at a fraction of the total purchase price.

So, back to today’s voyage;

Being the sort of organizational nut that I am, I insist on traveling fully equipped to make Jamie comfortable under any circumstances that may arise; including spur of the moment overnight stays. Thus I have laid out a comprehensive strategic plan that includes,

Overnight bag; with spare clothes, medication bag and toiletries

Entertainment back pack; with DVD’s, laptop, I pod, headphones, magazines, crossword puzzle book, paperback novel

Comfort basket; blanket, pillows and neck pillow

File box; includes medical records, hotel maps and other misc paperwork

Zippered pad folio / binder; with business card organizer, notepad, pen and current med list and other paperwork

Snack cooler; Food and beverages to ensure hydration and a full stomach for meds


So I load all this up, not forgetting the most important item, Jamie. With plenty of time to spare and the clinic address pre programmed into the navigation (we have only been there from the north side via UW), we set off. Jamie was a trooper, I did my best to give her a smooth ride, but with every bump in the road I could see her grimace and clutch her stomach.

We made it to the Seattle Cancer Care Alliance (SCCA) in a timely fashion and proceeded directly to radiology on the second floor. Thinking that we were early, I left Jamie in the waiting area and stepped around the corner to make a couple of calls. Still a few minutes before her schedule appointment, I returned and found her gone. A bit frantic I went to the receptionist and asked her if I could join my wife in the back. She phoned to whatever room Jamie was, but was told that it was too crowded. I took a seat right next to the door, and attempted to calm myself by reading a USA Today I found on a coffee table (apparently both the housing market and the pornographic DVD markets are both a bit slow, stocks are on the upswing though). After half an hour I am just about over the edge and a technician walks out the door. He strolls right pass me and when he is about 2/3 of the way to then opposite end of the waiting room, I think I hear him call “Crase”. I don’t know why I hesitated, but it took a minute before I replied “right here”.

He escorted me to an interior room where I found Jamie comfortable reclining in the medical equivalent of a lazy boy, covered in warmed blankets. Apparently the nursing staff had taken pity on her and allowed her to stay in the back room, instead of sending her out to the lobby to “enjoy” her berry / barium smoothie.

I was offered a folding chair alongside, where for the next hour I got a first hand look at the efficiency and professionalism this place has to offer. I won’t beat up our local outfit too much, but compared to our first experience her in Olympia, this was the difference between first class and Greyhound. Jamie got her Barium down, IV in and then she was whisked off very briefly for the CT scan. Although she had to remove anything metal, unlike Olympia where she was forced to disrobe and wear one of those revealing hospital gowns, she could wear her normal clothes in. After the scan they pulled the blood directly from the IV, thus minimizing needle pricks. A few minutes of observation and we were off to have a sandwich in the cafeteria.

After lunch we met with Heidi form Goff’s office, where she gave us a good briefing on the next week’s chemo and gave us a calendar for future visits over the next few months.

Although this week has been a bit hectic, it looks like for the rest of the summer we will be spending every other Thursday afternoon and Friday at the SCCA. So hopefully we can have some fun and try a few swank downtown Seattle hotels while we are at it. Any recommendations?

Dinner tonight was ala Martinez, keeping us right on track with the feeding / med schedule when we got home. It was nice to come home to a little fresh food in the fridge and not have to shop right away. Thanks Sharon and Pete. Jamie is enjoying the candy as well, although I have to abstain, apparently all those cookies have caught up with me for my pants are a bit tight.

As Jamie said in her post, our sleep schedule has been a bit screwy making sure that Jamie gets medication every 3 hours on a full stomach. And being the sort of worry wart she is, she sleeps for about 90 minutes before she starts asking me “what time is it?”. Then for the next hour and a half, she flops around, anxious that she will over sleep and let the pain get ahead of her.

So for tonight I have applied my managerial skills and invested in a digital timer. Hopefully this will give Jamie the piece of mind to sleep a little more soundly, knowing that she won’t sleep too long and I won’t be so grumpy.

We are glad to be back home and be with Shorty again. However he has not taken the presence of his stuffed imposter well, and I am told when he first entered the house and saw it on the back of the couch above Jamie, he went crazy, trying to climb over her and attack it. Just a warning Get Well Bear, you better steer clear as well.

There's No Place Like Home

My first official night at home was amazing. I didn't have to wake up to "let's check your vitals" or "time for meds." Unfortunately, my internal clock is still waking me up every three hours or so to take medication. I feel bad for John because I'm sure he was expecting to sleep a little longer than three hours at a time. Hopefully soon I won't need the pain meds and I too can sleep longer.

Today we head back up to the SCCA for a CT Scan. I thought it was going to be scheduled for Thursday, but I guess there is some red tape telling us my scan has to be transmitted to the East Coast by Thursday at noon for the study. John is a little bit worried that we might be pushing to hard with the study and not thinking enough about my well being. Dr. Goff has all the confidence that I will be okay, so I have to trust her.

I start chemo on Friday. Today I will find out all the particulars as to what this all entails. I guess for the first round, I will not have a port-a-cath put in. I sure hope they will be able to find a vein that will work for the chemo. Most of them are pretty used up, so it may be the most challenging aspect of this journey. I'm going to find out why I can't have one yet.

Our kitchen table looks like a pharmacy. For a person who went into this just taking a multi-vitamin, it's a bit crazy to see all the meds. My mom lovingly labelled all the bottles so I would know what the pills were. The pharmacy just labelled the containers with "as needed". I asked as needed for what? Soon I'm sure the names will be ingrained in my brain, but for now, my brain is still a little hazy.

I will try to post a little more often, as it is easier to type at the kitchen table than my hospital bed. I would like to thank all of you who have sent cookies, love, support and the much needed encouragement. I'm excited to start chemo and have this yucky bug out of my system.

Monday, June 4, 2007

Homeward Bound

Well it happned tonight about 7 pm so now Jamie gets to go home in the morning.

I just want to say thanks to all the great people at UWMC 7 SE who have been our caretakers and our friends thorugh this first battle in our war against Jamie's cancer. Even more than your profesional care, your personal time to talk, listen to us ramble about Shorty or tell us about your lives really helped. Jamie and I have been together a long time and thus in such circumstances it was difficult to talk( or think) about anything but her cancer, thanks for helping us see a little sunshine through these dark times.

I also want to send my love and support to all those other pateints and their family and friends who I met in the hall, elevator or family lounge. I may not know all your names and our conversations may have been breif, but I want to thank you for giving me that nod or comment that let me know you understand. Many of you have also made Jamie and I feel fortunate as we have seen others in even more dire circumstances than ours, and taught us that no matter what happens, stick togehter and don't give up. Thank you.

And to all our friends and family, thank you for keeping us in touch with the oustide world by reading and commenting on our blog, sending treats, gifts, visiting or just thinking positive thoughts.

Good night.

Getting To Know You...

Or, rather, how you know Jamie... Several people have asked me about the connections of people commenting here on Jamie's blog, so here's a fun post if you'd like to share how you know Jamie (and John) and perhaps your favorite thing or memory about her (or them). Comments get emailed directly to Jamie, so send her some love. I know, I know, it's hard to pick just one great memory/story!

Here's a photo from one of mine—this is the Guinness Brewery in Dublin, 2003. Jamie and I've been best buds since 4th grade. We were each other's "Best Woman" in our weddings. She's like my sister. She's also been friends with my husband Joel for quite a long time. Then John came on the scene in college, and we have one of those great relationships where all four of us are friends. I could blather on and on about why I love them, but it all boils down to the simple fact that we consider them our family. And, the bonus is that by claiming the Crase/McLaughlin clan as our own, we get so many more great people in our lives too...not to mention some excellent family recipes!

Sunday, June 3, 2007

All quiet on the SE front

Dr. Goff returned this afternoon from her trip to Boston. Although Dr. Tamimi had covered her official duties this morning, she came by just to check in and get a jump on her work for the week. I certainly admire her dedication to both her profession and her patients.

Once again May was our day nurse, which always raises Jamie’s spirits. May has to be one of the most efficient people I have ever met. I don’t know how she cares for (3) patients, yet always attends to Jamie in an unhurried style, with plenty of time for general conversation.

Becky Maffei paid us a visit today, barely out of here herself after having two knee surgeries. She recovered just two weeks ago one floor below where we are now. Becky replenished my cookie supply ensuring that I continue to receive proper nutrition while also having treats to reward our fabulous nursing staff. She also replenished our library and I am grateful for I just finished the book I brought, only to discover that some of our outside guests have been tearing pages out of our magazines.

I had to go do a little shopping and get some Starbucks, so I missed most of Becky’s visit. This is most disappointing as I had hoped we might compare notes on the 6 NE nourishment room and that of our own wings.

We also got a package from Boston today, thanks Lita for the tasty walnut dream bars—they traveled very well and are an excellent complement to my cookie ensemble. I haven’t seen any sugar cookies from New Jersey though. Going to let your sister-in-law show you up?

Reconciled that our departure may still be a couple of days away, I figured I have gotten all the mileage I could out of the two pairs of shorts I had (we are talking outerwear, maybe later I will go into detail about my super-duty travel boxer shorts) and decided that it was time to do laundry again. Luckily the family lounge has a washer and dryer, a stacked unit that reminds me of that in our first apartment, both in appearance and performance. I waited until well into the evening to start, just to avoid disrupting the other guests, but found the lounge occupied when I arrived. Despite several attempts, I was unable to get my load balanced. Re-counting every item, right down to my socks, I tried to apply my engineering skill and place my garments in perfect symmetry, two shorts, four t-shirts, six socks and two pair underwear. Each time the machine came up to speed it started rocking and howling as if it were going to hop across the room and jump out the window.

Whether it was my self consciousness or actually the noise itself, I found the ruckus intolerable. I apologized to the other guests and promptly left hoping they will allow it to run full cycle and won’t leave me with soap in my undergarments.

Although now Okayed to wear civilian clothes, Jamie has developed a preference for her hospital garb, enjoying both their freedom and economy. I have considered making a similar switch; however I am concerned that the staff may not be so accepting and could use it as rationale to revoke my linen room privileges, placing further restriction on my movements.

Jamie has been healing well and is in excellent spirits. With her increased mobility and independence our lifestyle has transformed from one of intense medical care to more like a stay in a Finnish youth hostel or rural Vietnamese motel, the major differences being most of the TV is in English and nobody rides their motorbikes down the hall.

We have both hit the wall with the institutional food, just high grading Jamie’s meal trays and relying more on outside sources. Our family (which includes the Martinez faction) has supplied us with a steady supply of rations, which I supplement with goods from the local QFC. Several times a day I go to the family lounge to change the cold packs in my cooler and rotate the stock with that in the refrigerator. I have commandeered an entire drawer for our cache, keeping things well marked with our name, room number and date in accord with the posted regulations. Several outsiders have asked me if I fear food piracy, but it seems that people here to support family members battling something as serious as cancer are unlikely to engage in such behavior purposefully.

Saturday, June 2, 2007

Tres tortillas por favor

Today we waited, walked, waited, walked some more and waited for the big event that will buy us our freedom, Jamie’s first post op BM.

So today was quiet and restful with Leanne and Krystal from Tectonix coming for a visit and bringing us a feast from the Claim Jumper. Anyone who has been to this restaurant knows the magnitude of the portions, and can visualize how I was able to both gorge myself and still feed the rest of our wing.

Ken Sr. also paid us a visit today, delivering several short sleeve shirts. Although hopeful we will depart shortly, this summer weather has caught me a bit off guard. Ken also swapped cars with me, thinking that Jamie may have an easier time getting into Chris’ sedan as opposed to our 4x4 truck when our release finally comes. Thanks for helping coordinate this Jen, I was feeling self concious about my limited wardrobe.

Food is the ultimate ice breaker and I have learned from my Mom and Sharon to be an effective food pusher. Whenever I am in the Cancer Library, heating up a snack or organizing my inventory in the communal fridge, I offer up some sort of tid-bit to whoever is about.

In the elevator today I met our neighbor Debbie who has been here with her husband for over two weeks. Debbie was a willing recipient of some of our food and I was able to introduce her to Jamie while on our evening walk. Debbie and her husband are from Brewster (north of Wenatchee) and have been here for over two weeks as he fights advanced colon cancer. Tonight is their wedding anniversary. Before our cancer experience I would have thought, “oh what a terrible place to pass such an event” but now I see that under these conditions pomp and circumstance have little appeal, as you are just grateful for another day and the opportunity to be together.

Hopefully Debbie and I will cross paths again tomorrow and I can share one of Jennifer Nichols’ fabulous enchiladas with her. Very tasty lunch Jen, especially when combined with some left over black beans from the neighborhood Mexican restaurant.

This little restaurant is just west of the UWMC in an old house on the shore of Lake Union. Its name eludes me, but it is apparently well known as it has been recommended by several people both in and out of the hospital. It has served well as cantina for Joel and I as well as alternate dinner spot and now is the source of one of Jamie’s favorite snacks, tortillas and cheese.

We have been diligent about Jamie taking her medication on a full stomach and thus avoided nausea for over 24 hours. So after dinner tonight I walked down the back side of the hospital, along the lake to refill our supply of this super snack. It of course was Saturday night so the place was packed and I was discouraged by the line for “to go” orders which spilled out the front door and onto the street. Well, it turned out that about half these people were misguided diners trying to get a table, so before I knew it I was standing at the till. Behind the counter was a woman probably ten years my senior and obviously stressed out by the chaos of the Saturday night crowd. I ordered a side of (3) flour tortillas and then attempted to describe to her my requirement for three small sides of cheese, not unlike what a young man had given me in this very same circumstance the night before. She stared at me blankly and then fumbled with the till before turning to ask another for assistance. Grumbling away she hit a few keys and requested payment of $7.22. Feeling a tinge of sticker shock, but also acutely aware of the pressure of the line growing behind me, I tendered a $10.00 bill and eagerly collected my change.

After I received my change, the women briefly disappeared, returning with (3) ½ pint containers. It took me a while to find the words, but I eventually was able to convey to her that I was requesting three very small portions in the small salsa cups (much like you might get tartar sauce in), just as the man had given me the night before. Looking disgusted she asked me just exactly what kind of cheese I was looking for, and I replied jack or cheddar, emphasizing that only one of these large containers will do. She again disappeared to the back, but returned momentarily with my cheese. She then asked me to wait around the corner, placing me directly in the entrance to the kitchen. As the waitresses pushed around me I could see her in the kitchen where she was shouting and waving a fistful of tortillas in the air. A waitress recently impeded by my presence returned to the kitchen and immediately recognized the problem, promptly handing me the package of tortillas that the cook had already prepared for my order.

The cashier retuned to her post where I attempted to delicately ask her if I would be getting a refund now that we had settled on a much smaller quantity of cheese. She pounded the touch screen and as the till popped open, she tore three $1 bills from the drawer. Not to be outdone, I tipped her a dollar in similar style, purposely avoiding the obvious tip jar and throwing it on the counter.

My initial reaction as I stepped out onto the sidewalk was one of anger and disgust. I thought to myself, “what was the big deal, my wife has cancer and wants tortillas and cheese, why is this woman so uncaring?” However as I plodded along back towards the hospital, I reflected on my own situation and realized that there may be more going on than just tortillas and cheese for her as well. This past month has been a humbling experience, as I often wondered what made people cut you off in the grocery store or sit at a traffic light dazed for several seconds after it turns green. Maybe they are having some other issue. You can’t tell if some one’s spouse has a serious illness just by looking at them can you? Maybe they are sick (knowingly or unknowingly) or are experiencing some other sort of catastrophe or hardship themselves. You never know. So maybe we should err to the conservative side and cut them some slack, back off and just help them instead of letting our negative emotions take control.

Friday, June 1, 2007

In the (chocolate) chips again

Today began like any other day, after a night of interrupted sleep I was awoken by the bustle of the doctors outside our door. Boy will it be weird at home without all those people standing in my bedroom.

With Goff in Boston for a few days, her peer Dr. Tamimi is supervising Jamie’s care. While Goff will always be seen by us as “#1”, I was very impressed by Tamimi’s warm but confident approach. It is also nice to know that Goff is well supported and that in her absence Jamie’s care will never be compromised.

Much of the past 24 hours has been spent discussing Jamie’s legs swelling. Although the consensus has been that it is standard fluid build up, Tamimi recognized our concern and ordered an ultrasound. The results were negative for blood clots and thus we will return to the “TED” stockings and massaging air wraps. Dr. Ulger (she is member of the regular morning troupe) also came by later to talk with us and emphasize that this is an expected symptom of the lymph node removal.

May was the hero of the day again of course. I went off to the 8th floor today to use the guest shower and when I returned to 7 SE, I heard the shower running and the two of them yammering away like school girls in Jamie’s bathroom. Figuring I was not needed I took the opportunity to take my dirty laundry out to the truck and return a few phone calls.

After battling nausea through the night and early morning, food has become even more emphasized, to ensure that Jamie does not take a single pill without food in her stomach. This makes my new found knowledge of the nourishment room most fortuitous, as it give me reason to explore the true magnitude of its inventory.

With the beautiful weather I have been trying to convince Jamie to let me take her outside. With May’s concurrence and supply of a wheel chair she final signed out of 7SE for the first time in over a week.

Jamie was obviously nervous about my lack wheel chair experience, and had difficulty relaxing on the elevator ride down. We rode to the first floor, where we rumbled across a lobby surfaced with brick pavers, and then out through the automatic doors, briefly hanging up on the threshold until I turned around and went out backwards. As we crossed the walk and driveway to the other side, Jamie grimaced with every bump and joint in the pavement. Once across the street we stopped along a grassy area where a very tame mallard and hen sat, just watching the people and cars go by. Jamie took a brief look around, and being eager to get back to her room before May left for the day, promptly asked to return.

Despite my attempts to avoid the hazards, my nerves made me fumble even more as we crossed back to the entrance. Convinced that I would get her squished in either the automatic swinging doors or the elevator, Jamie tried to help me steer the chair. I told her that as long as she kept her arms and legs within the envelope of the chair, we could actually use it to hold the doors open. She failed to see the humor so I promptly pushed the button for floor 7 and whisked her off to the room.

We got back to our room just in time to see May, who although at the end of her shift wanted to make sure Jamie got her pain pills without the delay that often comes with the switch. Having just returned from our outing, we of course first needed a snack, which May patiently provided.

Jennifer Nichols also came this afternoon replenishing my cookie supply and leaving me with some delicious looking enchiladas. But mostly she brought Jamie some great conversation and a break from the routine.

Feeling a bit tired from yesterday’s marathon, our walking was greatly reduced to a few moderate laps around the complex. However she is more mobile than ever, getting in and out of bed and walking to the bathroom on her own. My only responsibility now is to push the pump on the hand sanitizer on the return trip.

During one of my brief absences, Dr. Goff’s nurse Heidi came to tell Jamie that she has been accepted to participate in GOG 9919, the trial group for the 15 day chemotherapy cycle. Jamie will undergo a CT scan and then get her first chemotherapy next Friday, June 8th. Although not without risks, we are still very positive and see this as Jamie’s next step towards complete wellness. Heidi is obviously the woman in the know, and we both appreciate her willingness to answer our questions both in person and via email.

I of course am becoming a real veteran of the UWMC, offering guidance and information to other guests as I move about the complex. Having been in the same circumstance just days ago, I can easily pick them out by the confused look on their face as they play a sort of “einy-meeny-miny-moe”, in the air while trying to select a button in the elevator. Half elevator operator, half tour guide, I am there to share my knowledge and get them on their way.

I have a little too comfortable here and thus I was ejected from the nurses station today, apparently crossing some mythical line defined by the HIPPA regulations. Apologizing profusely, I left with my tail between my legs, committing myself to behave better. Still I get tempted to explore, but have forced myself to moderate a bit, and thus far resisted the urge to open the door marked “tub room” every time we passed by on today’s walking route.

I have seen Michael several times in the hall the last couple of days, and although he was not assigned to our room, he always had a few moments to chat and just say hi. He also stopped by at the end of his shift to let us know that he would be off for a few days. Unfortunately this leaves us in a conundrum as we are wishing for Jamie’s discharge this weekend, but also sad that we won’t be here long enough to see our new friend one more time.

Our evening nurse is Thomas, who is obviously a man of great efficiency and also this months winner of the wing’s Daisy Award (I think this is like nurse of the month). Although his nursing skills appear to be excellent I am most impressed by the wealth of accouterments he carries in his apron. I have seen others wear these, as they are similar to my tool belt, but certainly his is superiorly outfitted. If I were to take up the trade I would certainly follow his example.

Late today Jamie’s IV gave out again, a situation that always gives me great anxiety because I know it will be a struggle for them to find a willing vein. Many a nurse has been fooled by her apparently hospitable veins, only to be vexed after several tries. Tonight they called the IV nurse, and in moments she had installed a new IV port in Jamie’s arm, hopefully sparing Jamie’s stomach from a few more pills. Unfortunately Thomas tried to use it a couple hours later and it appears that this tap has failed as well.

After dinner tonight we were treated to a visit by the Wood family. Joel and I took the kids down to the local taco shop and got some take-out while the girls stayed in the room to chat. Katrina presented Jamie with a beautiful quilt sewn by Lora Wood and quilted by her own hand. She also brought some delicious cookies, apple bread, jelly and Jamie’s favorite: Finnish sweet bread (pulla) made by Doris.

But tonight’s adventures didn’t end here. Just as we were settling in for the night the nurse announced that Jamie would be getting her stables removed momentarily. Worried that without them her stomach would tear open and her guts spill out, she fretted terribly while nurse Lisa fetched the proper tool. I consoled her by telling her the rabbits had their staples removed with little fan fair and not to worry as it would be over in just a few minutes. She did a great job, even though a few were stubborn and required a bit of twisting and a yank to come out. I stood by studiously watching the nurse, subtly hinting that I would like to give it a try, but neither the nurse nor Jamie extended the invitation.

That over it is finally time to settle in for the night. We are just waiting for the next nurse to come on shift so I can give her our wake up and snack requirements for the next 8 hours.