Friday, February 26, 2010

February 26th

Long time no blog. But alas, I am home alone. Jeff, Syd, and Hallie left for hawaii this morning. Sofie and I just had a nice dinner with the Ellingson's and Sofie is spending the rest of the evening at Damon's. Our break has been a good one with the exception of the last fews days. Sofie got a bad case of thrush, a common side effect of chemo, which caused her the "worst sore throat of her life". We are also going through the vicissitudes of emotional upheaval related to realities of life with cancer. It's crazy how Sof manages her emotional world so well and then boom, it hits out of nowhere and she's in a funk that feels paralyzing to her. She articulated it as "an emotional pain she cant describe that makes her whole body hurt". Last night was a biggy. It's not necessarily unfamiliar territory anymore, so we realize that a "good cry" is in order and we move through it. I reminded Sofie that it was only temporary and to give herself permission to feel it and move through it. I held her and rocked her until her tears dried up. She called for her Uncle Eric at 1 am for a priesthood blessing and felt immediate relief afterward. Then we enjoyed his sweet company at the wee hours of the morning, eating a big bag of sour jelly bellies he brought with him.

I also wanted to blog about the evening we spent at the Center for the Arts fundraiser for 2 young adults with cancer (including Sof) from Jackson along with the unveiling of a film about young adulthood cancer sponsered by "First Descents". It is a kayaking program and expedition for young adults with cancer or in recovery from cancer. There was a silent auction and performances by Contemporary Dance of Wyoming and a local improvisational comedy troop. Fantastic night.

Sof and I are on our own til we leave for SLC again on the 4th of March (next Wed).


Tuesday, February 16, 2010

Feb 16 Post St. John's Hospital Visit

Here is the update! We loved our stay at St. John's. We started in the oncology ward with Judy Bayse for the first couple of hours. Then we checked into room 130 and stayed Thursday through Saturday. She only received one chemo drug ("dox") this time. It was far and away less intense without the cisplatin. Sof was so comfortable there and had the BEST nurses! She was surrounded by her friends from Jackson and that was a real treat for both of us. Sof had one night in the hospital that was heavy emotionally for her but like all of those times, they hit and pass. She has been in good spirits since and is comfortable here at home. Tonite she came walking into the kitchen on that leg with no crutches and I thought I would burst with happiness so see that sight. She was beaming. We still have 15 days left in Jackson. We are thinking about traveling out of town to go to Damon's away games this week-end!


Wednesday, February 10, 2010

Chemo Schedule

Feb 11-15 St Johns

Mar 4-8 PCMC

Mar 11-15 PCMC

Mar 18-22 St Johns

Apr 1-5 PCMC

Apr 8-12 PCMC

April 15 (Sof's 17th bday)-19 St Johns

Apr 29-3 PCMC

May 6-10 PCMC

May 20ish bone scan, chest scan, and leg x-ray
May 21st- last surgery- port out!

Wednesday the 10th of February

Sof and I have been home for 2 days. She is doing fine. We are entering St. Johns hospital tomorrow at 11 am. She will be in the hospital through Sunday or Monday.


Friday, February 5, 2010

Audiogram, Feb 5

This afternoon Sof had her hearing checked to see if the last cisplatin treatment decreased her hearing. The result was that she did sustain more damage which put her at the borderline of needing hearing aides. The conclusion that her oncologist came to was to suspend Sof's next cisplatin treatment and just administer the dox. The audiologist initiated a conversation with Sofie which entailed showing her an array of the lastest hearing aides. We were a little caught off guard to say the least and werent to thrilled to have that conversation especially before we'd had the chance to speak with her oncologist. We were feeling derailed at that moment and emotions were right on edge. Our question was " do they just keep administering cisplatin until the damage is done and then suspend?" I guess I had assumed they would abort the treatment before it got to that point. We received 2 reports, one from the audiologist and one from the oncologist, the former saying the damage was permanent and the latter saying, it could come back a little with the suspension of the cisplat. We'll see when see in retested in 3 weeks.

So that is currently what we know on the hearing. On a better note, Suzy Malone and Lili Hall came to visit (Sofie's AMAZING cousins and gooooood medicine!) We figured out Sofies dates with her chemo schedule and if she stays on time, her last day in the hospital for cancer treatment will be May 10th. Then around the 20th, she will have her last chest and bone scan for awhile and go into surgery to take her port out. It seems as though there is an end in sight. I think todays news has sent Sofie into a deep sleep.

February 5th Friday

The first discussion we ever had with Sofie's surgeon when he gave us the diagnosis was his recounting of a story of another one of his patients. After her surgery and imminent return back to chemo she said, "I would rather die than go back to one more chemo treatment." As with several things he told us, I was not only surprised at what he chose to share but at his candor as well. Being the type of person I am, I definately appreciated his direct style of honesty, but often times I couldnt believe what he was saying or that he didnt have the least inclination to sugar coat.

Sofie had one of those nights last night that reminded me with full force that the "medicine" her body is receiving in fact threatens her internal organs and life itself. Her suffering got so bad that at one point she turned to her Dad and asked him if this was what dying felt like. Anyone who knows Sofie knows that if she asked such a question, she genuinely wanted to know. She required more morphine last night than she ever has. By 2 am she was drifting to sleep.

Sofie has tolerated chemo better than I could have ever hoped and yet on a night like last night, we are humbled and keenly aware of the ugliness of cancer and the barbaric nature of its treatment. Sof feels better this morning. She feels relaxed and at peace. And so goes the highs and lows of this ultimately spiritual ride. Sofie is in good hands medically. She is also in Gods hands and is very aware of that. How is it possible to feel grateful through this? Many times this is my question. But God is in charge and everyday is another submission to Him and an attestment to His role. It's good for Him to be the orchestrator. That, I can be grateful for.



Thursday, February 4, 2010

February 4th 2010, Thursday

We always begin a new chemo treatment on Thursdays so here we are again, all situated in our room. Sofie gained 2 lbs last week due to the new med she is on and right now she is eating a chicken ceasar salad! So good to see her eating again. We enjoyed the 2 days we had off at grandmas and grandpas. We should be leaving to come home to Jackson on Monday. Tuesday and Wednesday of next week we will have off and then Thursday we will enter St John's for her first 5 day inpatient chemo treatment in Jackson!

After this current 3 week session, we will have 2 weeks off and do it again 3 more times. So..... its 3 weeks in 2 weeks out for 3 more times which means we are done end of May. The ONLY thing that would screw this schedule up is if she gets sick OR her blood levels are too low to start on time. In this event, it delays her another week which is added onto the end. So far, due to faith and prayers, Sofie hasnt been sick OR had blood levels prohibiting her from starting on time. Sof always feels pretty good her first day in the hospital because the drip doesnt actually start til around 10 pm.

We are looking forward to having her cousin Katie spend the night with us tonight!


Monday, February 1, 2010

February 1 2010

We have been discharged but are waiting for the surgeon to come fix the bottom of Sof's cast which rubs and causes pain. Currently, Sofie, Hallie, Grandpa Turner and I are watching Alladin in the hospital room, just waiting. We have to check back in Thursday so it's not worth it to drive home today and impossible to fly home because of the cast. Im sure we will go to my parents. Good news is that it looks like we wont have to do the 3rd treatment of this round here at PCMC. St Johns has got orders from Primaries to be able to do it in Jackson. So instead of ariving back in Jackson on the 15th, we should be back on the 9th and have 3 weeks at home (4 days of which will be inpatient at St John's. It will give Sof's friends in jackson a chance to be more part of her treatment locally. We're expecting some awesome visits!!