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.