Friday

I'm okay, Ryan's okay, but I feel absolutely fried. This week has really taken it out of me. Tessa, fortunately, is her energetic self, and keeps us busy.

I am experiencing some pain in my arm on the surgery side, and it's really disconcerting - sometimes it feels like someone is grabbing me in the armpit and yanking on me. Soon I will take a Vicodin (my first since Tuesday) and try to get some sleep while Tessa naps. Ryan remains private about his health, but we are hopeful that on Tuesday his doctor will give him the all-clear to go back to work, and that he will feel well enough to do so with gusto to get caught up and to make progress on getting ahead.

Thank you for continuing to include us in your thoughts and prayers.
Kristina

Benign nodes!!!!!

GREAT news to report. I just got a call from Teresa, the nurse at my surgeon's office, and I was told that 21 nodes were removed and ALL 21 WERE BENIGN! No specks of cancer in any of them.

To say that this is a huge relief is to understate things, to say the least.

Kristina

Fear

First, I got breast cancer. Then, our cat got horribly sick. Now, Ryan is sick. Dear God, please spare Tessa from all of this.... I would be twice as sick to spare her. It feels like the bubble surrounding our family, the one that protected us, has burst, and with that bursting comes fear.

Sigh.

When it rains it pours. Yesterday was a flood!

Yesterday, Ryan came home from work early with terrible chest pain and the anxiety that accompanies such pain. We rushed him to the doctor, and he is now being treated. Ryan is much more private with the particulars of himself and his health than I am (as all of you can see from this blog, I'm an open book, but Ryan is truly a private person....not sure how he puts up with me!) so I'll leave it at that and just ask that you include his quick healing in your prayers. His doctor has advised a week at home for rest and recovery. This is not a good time for Ryan to take time off from his job, and that worries him, but his health is paramount and we are blessed with an understanding boss who wishes him well.

These are difficult days for our family, but not without sunshine. Today I went to the wading pool and I mostly watched and rested while Caley chased Tessa around; it was good for our family to be in the sunshine and watching our daughter's joy.

As for me, I'm stressed by all this (of course) but still counting my blessings, which are many. My recovery from Monday's surgery is amazing, especially considering yesterday's troubles. I am able to lift my arm over my head already, and whereas I don't have full mobility it's MUCH better than this stage of my mastectomy recovery.

With love,
Kristina

Of all the wacky things...what next?

I got a call from my OB/GYN today. She had been looking at my scans because the CT scan noted "tubal ligation suspected" (which is not true) and the bone scan noted "degeneration" in the hips. The tubal ligation is just plain not true and Dr. H didn't see anything to worry about, but the degeneration is something she's concerned about. The bones in my hips are indeed showing signs of wear, and it's possible that this is an early form of osteoporosis or of arthritis. You have got to be kidding me, is all I have to say. As if I don't have enough to think about!!! Anyway, I will need to go in for a bone density scan sometime soon, and talk to an orthopedic surgeon down the road to keep an eye on this. Since my mom and grandma have/had arthritis, that is a possibility, but I don't feel any hip pain (except when I was pregnant, and that was brutal). If it's osteoporosis, I guess there is treatment (calcium?) that I can take.

This never would have been spotted if every inch of my body wasn't being scanned for cancer...if it weren't for that, I'd never know about it. I guess it's good to know and to take appropriate precautions, but it's a bit disheartening. Am I really just falling apart?! I'm only 35 and I seem to be getting old women's diseases left and right. It seems very unfair, but nobody told me that life was fair....

Otherwise, I'm doing extremely well. I enjoyed our walk this evening, and I'm enjoying feeling much better than I thought I would. Things could certainly be worse.

Until next time,
Kristina

The nodes are out and I'm home

Hello, everyone. This update is to let you know that then surgery today went well, and none of the nodes showed "visible" cancer (none did last time, either, but....). We will get the pathology results in approximately four days.

At the hospital this time, I had Ryan, my mom, Susan, and Ryan's sister Linda. I was especially touched that Linda came, as she lives in Spokane (a five hour drive) and she surprised us. When I woke up, my dad and brother were also at the hospital. Since I was released so early, after we left we all came to our house and hung out in the back yard and chatted and relaxed.

I am home and recovering nicely. Vicodin is my friend.

Love to all,
Kristina

Less than 12 hours left 'til I'm in the hospital...again

Well, it's 8:33pm and I need to show up to the hospital at 8am. I do not feel ready, although in reality there are only a couple of things left to do (print the letter for Dr. Dawson, pack some books in a bag). Caley will come at about 10:30pm to spend the night here so that she can help with Tessa in the morning.

It was a lovely day. The Alki Cafe was great as always, the baby shower for Natasha was filled with laughter and friendship, and the street fair this afternoon was fun for all. When we walked home from the street fair, our neighbors came out to play sidewalk chalk (Noah, Daven, and families), and then Ryan gave Tessa her bath and tucked her in to bed. Really, a fabulous day.

I still dread tomorrow. Who wouldn't? I do what I do because I need to do it. That doesn't mean I have to like it, though.

Tomorrow I will be at Swedish's Providence campus (same as last time) at 8am; surgery is scheduled for 10:15am. I should be on the operating table for two hours. Of course, I may have said this before, but I don't remember, so there it is. I should be home by the evening.

To close, here is a picture of Caleb, Tessa, Nina and India at the BBQ yesterday - I love it! Better to end on that note than on thoughts of surgery.



I dearly love my friends and family. I am grateful that I was able to spend time with them again today. I look forward to more of those times soon. In the meantime, please offer me your thoughts and prayers tomorrow as I do what I do.

Love,
Kristina

Letter of Complaint

Okay, friends, here it is. This is the scathing yet informative letter that I have written to Dr. Dawson. Dr. Dawson has agreed to share my experiences with the "medical professionals" involved in my port-a-cath experience, and I am very grateful to her for that fact. Dr. D is a prominent and powerful physician at Swedish, and with her support I hope that real change will be made and not that my letter will just earn me a "Dear Patient" letter to calm me down.

Please take a look at this and email me at rykri@comcast.net if you have feedback. I realize that the letter is long, perhaps overly long, and I wasn't certain which points to shorten. I want the letter to show that:
1. The experience truly WAS horrific (through examples)
2. That I am a reasonable person (through my tone)
3. That changes must be made in the way the doctor treats patients (through the whole letter, and then through the specific suggestions at the end)

Please send me your ideas! I want to do this "right" - I want Dr. Dawson to feel so enraged on my behalf that she is willing to storm the castle for me; I want the doctors in question to feel so humbled that they immediately alter their practices. If I don't do that here, I need advice on what to change....thank you!


Dear Dr. Dawson,

I am writing you this letter, at your urging, to put in writing the experiences that I had last Thursday, July 14, 2005 as I had my port-a-cath installed. This experience was hands down the most negative, humiliating, terrifying medical procedure that I have ever experienced, and I am horrified and angered that the medical staff treated me as they did. My treatment at Swedish has, in general, been exemplary of the best possible medical care in every sense, but this one experience was horrific. I greatly appreciate your willingness to share this letter with the appropriate individuals so that they may learn from my experience and insure that no other patients receive the same treatment.

The port-a-cath installation is, I realize, a routine procedure at this hospital, and while it does not come without risks, I was not particularly worried about it. I chatted with the nurses in admitting, and then again with the kind nurses John and Tracy when I was brought downstairs, on a gurney, for the procedure. It wasn’t until I was brought in to the operating room that things went wrong for me.

The doctor came to me, and kindly explained the general procedure that would follow. This was more or less what I already understood, and of course I consented to move forward and begin. I was administered drugs to “put me in la-la land” (a quote from the nurses) but keep me awake, and we began. From here, my list of complaints is long – too long.

v Almost immediately after receiving the sedatives, I saw what I first thought to be a bug running across the drape three inches from my face. This – understandably, I think – startled me, and I called out to the nurses and doctors to remove the insect. I felt very unsettled and nervous, and the response of those in the room was laughter. I was told, “You are not getting ANY more drugs!” and was informed, eventually, that it wasn’t a bug, but a reaction to the drugs that was causing me to see spots. This may have been humorous to those present, but it wasn’t in the least bit amusing to me: I do not partake in recreational drugs, I am unaccustomed to hallucinating or seeing spots, and I was worried by my reaction. The laughter and nonchalance of the medical professionals helping me was insulting and callous.

v Because I was not a candidate for more drugs at that point, I was completely lucid for the entire procedure, and not at all in “la-la land.” I heard every conversation in the room, spoken as if I wasn’t a person who was experiencing a traumatic event (for any time that a surgeon needs to wield a scalpel into the jugular vein and chest, I consider that to be traumatic). One nurse called to another, “Oh, isn’t that one of the pens you made?” and they discussed how it must have gotten lost and she walked away from me to get it, for example. I did not feel like I was given the full attention of the staff, and it was discomfiting.

v At one point during the surgery, the surgeon rested his hand on my throat, making it difficult for me to breathe and making me feel extremely claustrophobic (as it was hard enough to be in a tube of fabric with nothing visible but blue cloth a couple of inches from my face). I called out “Your hand is on my throat – it’s hard to breathe,” and though the hand was moved I did not receive an apology. Instead, this happened several times during surgery. I would like to point out that as a patient, I did not appreciate being treated like a car. My throat is not a hood that can be leaned on – it’s an important part of my body, and if for some reason unknown to me it was necessary for the surgeon to exert force on my neck I deserved a warning, explanation, or apology.

v Some time during the surgery, the physicians’ assistant took over. I only knew this because at one point the doctor started asking questions like “Did you remember to use the saline?” and other steps of the task at hand. This also made me uncomfortable – I had been introduced to the surgeon as the person performing the task, and suddenly I had been handed over to someone else. To be on an operating table, awake, is to feel incredibly vulnerable, and this made me feel even more vulnerable…I had no idea who was touching me. To think that the second person needed coaching and that the doctor in charge hadn’t been watching her every move was even more disconcerting and worrying.

v In the middle of the surgery, I believe as the port was placed, huge pressure and tugging and pain occurred on my chest. It was very sudden, and felt rather violent – even the bed moved slightly as things were yanked inside of my body. This was terrifying. I find it unconscionable that the doctors and nurses did not give any warning that this would happen, or tell me to brace myself, or inform me that it would only last a moment, or something. I instantly asked the doctors, when I caught my breath (for I was now starting to cry) to please explain what they were doing to me. I tried to explain, from under the blue drape, that it was terrifying to feel such yanking and pulling and not know what was happening. My requests were not honored, and nobody ever explained to me what was going on.

v At some point in the procedure, the numbing started to wear off and I felt things poking and hurting me. I informed the doctors of this, and rather than a kind response I heard, “Oh. Well, I guess we’ll have to give you more medicine,” (which was then administered through shots to the chest). The tone of voice and the lack of sympathy conveyed to me made me feel that my comments were either unwelcome or perhaps simply an irritation.

v Though I attempted to communicate with the doctor, the doctor never communicated with me. There was a nurse at my shoulder most of the time (though this same nurse left to get the pen she’d misplaced) who occasionally asked me how I was. When I was crying and said I wanted to understand what was happening, she rubbed my head but never gave me answers. At that point, I felt very powerless and afraid.

v When the drapes were removed from my body as soon as the procedure was finished, the doctor was nowhere in sight. Was I not important enough to speak to after he had used his scalpels and needles on me? Did he not find reason to ask if I was okay?

v When the team was ready, I was told to move off the operating table and onto the gurney to go back upstairs. I had to ask them to wait so that I could button up my own gown so that my left breast would not be exposed to every person in the hallway. I did all but the last button by myself, fresh from surgery on one side and with a month old mastectomy and limited mobility in the other arm, while people stood and watched. This is the opposite of kindness or respect.

Is this how patients are to be treated? Is this how the doctor performing my procedure would wish to be treated? Is this how he would treat his wife, mother, daughter, or friend? I cannot imagine that he would be so cold, or that the attitude in the operating room would be so cavalier in that situation.

In sum total, I felt like, once I got on the operating table, I was treated like a “thing” and not a person. I was made to feel alone, and I was very frightened. This experience was significantly more traumatic and stressful to me than my mastectomy was, for before and after my mastectomy (during it I was “out”) I was treated with such respect and kindness that I could find hope in myself draw comfort from the caring attitudes of the doctors and nurses caring for me (thank you, Dr. Dawson). The “simple” placement of a port-a-cath, on the other hand, was a truly horrific experience for me, and it is my greatest wish that no other patient should be treated in this manner again.

It is hard work being a breast cancer patient. I must subject my body to any number of atrocities – knives, needles, toxic drugs – to heal. I am willing to submit my body to the medical community, even when it hurts, so that I may heal, for I have no choice. But I demand to be treated less like a thing and more like a person. I am enraged at the treatment I received, as I have explained it in this letter.

To have had a positive experience would have been so easy. All the “extra” that I needed was clear communication from the doctor and staff, answers to my questions, and kindness when I found myself afraid. Of these, the most important was communication. Had I understood, for example, that I might see spots and that if I saw them I should notify the doctor, I would have known that there were no bugs crawling near my face. Had I understood that great tugging would occur, I could have braced myself. Had it been explained that the physicians’ assistant would be taking over part way through for the routine part of the procedure, I would have felt more accepting of that. At any time, having my questions answered would have helped.

Dr. Dawson, thank you for sharing this letter with those who most need to read it. I believe that Swedish, in general, offers the best care that the medical community can offer, and that this experience will remain an anomaly in my treatment. I truly appreciate that you are willing to take the time to hear my concerns, and to work on correcting them so that future patients will never need to have the same negative experience that I had.

Sincerely,


Kristina Surface

Sunshine and relaxation

Yesterday's BBQ at our house was crazy and wonderful - it's an amazing thing to have so many good people at our house. I'll post pics when I have more time. I had a fabulous time, and it pretty much wiped away my feelings of anger and pain from Thursday. It's amazing what good friends can do!

Today it's supposed to be in the 80s, and we have a very calm day planned. This morning we watched Lance's Discovery teammate George Hincapie win this stage of the Tour de France, and Ryan's enthusiasm was infectious. Tessa and I sat and stood beside Ryan on the downstairs couch, yelling "Go George! You can do it! Go! Go! GO!" and Tessa may have been the most enthusiastic of all of us. This is the first time since 1999 that one of Lance's teammates has run a stage, apparently.

And you say "Huh? I didn't know that you cared about cycling?!" and to that I can only smile. No, I'm not the cycling addict that my husband is, but it IS an amazing sport, and I love to watch Ryan's eyes light up when the Tour is on TV. I've said it before, and I'll say it again...I'm also incredibly inspired by Lance's amazing comeback from stage IV cancer.

Speaking of which, so far, Ryan has earned $470 in donations to the Lance Armstrong Foundation! Thank you so much to those who have submitted a donation - we believe that this money will be instrumental in finding cures for cancer. If you haven't donated yet, please consider it today - the link is below.

Donate to the LAF Foundation and support Ryan's ride in September.

In a moment I'll hop in the shower and get ready, and then we're headed to the Alki Cafe for breakfast. At 10:30, I'm headed to Linda's house for Natasha's PEPS baby shower, and Ryan & Tessa will go hang out with Mark and Nina.

Love to all!
Kristina