Everything I learned about being a patient...

Everything I learned about being a patient, I learned from my husband. My husband was born with cystic fibrosis and struggled with it his entire life. I knew about it from the beginning of our relationship and it became one of the biggest parts of our life together--taking up so much of our time and energy. In a lot of ways my primary role was as witness. Witness to the pain and suffering that my husband endured and witness to his beautiful, wonderful life despite of CF. I was the one person who saw it all, walking beside him, holding his hand. For some reason now, the fact that I was there to witness feels like one of the more important roles of my life. I got to see all of the parts, where he only showed other people certain parts.

As the witness, I always saw him in his role of patient many times. He was a different man when he was in a hospital gown. At times the different behaviors drove me crazy, but I could also understand the reasoning for some of them. And now, as I am forced to wear a patient gown, I see myself modeling my behavior after Gessner. It was so exact the other day that I felt like Gess was speaking through me. It was during my first chemotherapy treatment.

I arrived to the Cancer Institute about half-hour early, picked up my lab slip and went to the lab. It was my first treatment and somehow I already knew the routine. Check it at the front desk, get lab slip, take slip to lab, get blood drawn, take slip back to the front desk. It went seemlessly; the nurse accessed my port, drew my labs, and put a dressing on the port so I could keep it until I did my treatment. I took my slip back to the front desk and sat in the lobby to wait. And wait. And wait. Gess taught me to always have something with me to do while waiting...so I had my iPod, iPad, knitting, and a kindle full of books. I also had a friend with me and the hospital had jigsaw puzzles on a table. So, we were sufficiently entertained during the wait.

Finally we went back to a treatment room, for some more waiting. Again, something that Gess went through all of the time. There was some delay in getting my assignment for a clinic trial, so we literally sat there waiting for the researchers to randomize me. I handled the waiting with poise and grace, not by getting grumpy at the nurses or pacing around the room.

The results were finally brought to my room and I signed the consent forms and the nurse took me up to the infusion floor. More waiting, but I tried to stay calm by listing to my "relaxing" playlist. Gess often slept at these times if possible.

When I went back to an infusion room, the nurse told me that they need to get another blood draw and that it needed to come from my arm, instead of my port. This happened a lot with Gess and I know that it was frustrating for him. But, Gess never allowed himself to take that frustration out on the nurse or the phlebotomist. And just as he would have, I found myself smiling at him as he walked in, asking how his day ways, and making other small talk. I apologized for him having to come all the way upstairs just to get my blood and as he left, Gess's words came out of my mouth, "Well, thank you sir. Have a good one." Those were his words, but they felt completely natural coming out of my mouth.

Gessner's demeanor and attitude with the doctors and nurses impressed everyone he encountered. I received countless notes and cards from nurses and MAs who had cared for Gessner during his many stays and they all commented on how friendly and positive he was even when he was feeling so sick. I want to be like Gess in this way and want the people who I encounter during the journey to have a positive association with me. Of course, there were plenty of times during my reign as wife that I had to be stern or demanding of medical professionals--and those times were necessary. But for the most part, I want to be a caring and compassionate person to those around me, even when I am not at my best.

Good morning from Gessner

I've been thinking a lot about Gessner lately. I think about him a lot anyways, but the last couple week have been particularly difficult because of the egg retrieval and the anticipation of starting chemo. At one point during my lowest part--partially induced by the mega doses of hormones cruising through my body and probably the highest amounts of stress I have had in awhile--I felt utterly and miserably alone. It happened because I was having trouble finding someone to take me to the appointment to have my eggs harvested. It was late notice and the date kept changing and I understand logically that people have plans. But, my heart was broken realizing that I no longer have "the person" whose job it is to take you to these types of appointments and to be with you no matter what. My relationship with my biological family isn't one where I can get that type of support for a variety of reasons. But since I was about 19 and feel in love with Gessner, he was always my person. And because he loved me and was committed to me, it was his "job" to take care of me, one that he usually did willingly and lovingly. It was his job to drive me if I couldn't drive myself. And to be brutally honest, it was his job to be there with me that day to hold my hand and get me through that process. But, he's gone and he wasn't there. And yes, there is anger that he is not here for this even though I know that he would have given anything to not leave me.

Now, I don't want to discount all of my wonderful friends. I am so lucky to have so many caring, loving, fun, crazy people in my life and my life would be so boring and empty without them. But, as much as any of us might want them to be able to fill the void left by Gessner fully, it just can't be done. The egg retrieval turned out fine and I had multiple people that could take me, but the experience was just a very lonely one for me at times.

This morning I woke up at a very un-Lisa like hour of 5:30 am, with no prompting, no sudden noises, lights, or anything to wake me. Beauty wasn't even awake and gave me her look of utter annoyance when she saw me start to stir. I closed my eyes and tried to will myself back to sleep, but I could tell immediately that I wasn't going to fall back asleep and if I did, it wouldn't be of the restful sort, so I got out of bed.

Beauty stayed in bed, probably hoping that I was just up for a short bathroom break and would be back in bed soon. She is most definitely not a morning person. But after she heard me pouring my cereal, putting her food in her bowl, and turning on the computer, she got up to see what I was doing. I ate a bowl of cereal and took my investigational chemotherapy drug. I had to wait at least 30 minutes to take the rest of my morning medications (also with food--so I guess it is going to be two breakfasts for me for the next 12 weeks). So I checked facebook a bit and posted to convey my annoyance about being up so early. Too many emails, no desire to check them, so I decided to do something else.

Another part of my "therapy" is to take 10 minute walks at least 4 days per week. This is a laughable exercise regimen for me and to be honest, I am a bit peeved about it, but I'll leave that for another day. Adding Beauty into my walks is a bit tricky because she is a beagle and beagles like to sniff everything that they pass. This can lead to 30 minute "walks" that cover about 4 city blocks. Not the kind of cardio that is called for in even this "exercise light" program that I am on. But, at the same time, it seems wasteful to take a brisk 10 minute walk by myself and then have to walk Beauty again later on. Plus, I always worry that her anxiety is going to flare up and she will cry when I leave the apartment. I haven't heard any complaints (and I can't hear my neighborhood's dog or toddler most of the time, so I think that I'm safe), but I don't want to risk walking them up at 6:00 am for no good reason. I also have way overdue library books, so I decided that I will have a multi-tasking walk--getting in my 10 minutes of cardio, giving Beauty her chance to sniff away and catch up on the goings on of the neighborhood, drop off my books, and hit Starbucks.

I decided that the best way for this plan to work was to let Beauty have some sniff time and time to do her morning doggy business to start with so my chances of 10 minutes of uninterrupted brisker walking would be better. That seemed to work for the most part, though I had to pull her away from an especially fragrant rhododendron bush. We got to the library, with 4 more minutes of brisk walking left, so I took her through an empty parking lot, walking down the middle where I figured there would be fewer distractions. Mission accomplished. Library book returned--large fines inevitable.

If I'm up this early and out walking, surely that means a trip to Starbucks is in order. I have been feeling guilty about not using reusable mugs when I go out to get coffee, so I looked at the selection there and found one that I liked because I could decorate it myself and then change the look as often as I want. But, after the cashier rung it up I asked what size it held and it held a grande, whereas I get a tall. So, no dice. I have several travel mugs sitting unused on my shelf because they are just not quite right and so I wasn't going to buy another one to collect dust. In fact, as soon as I finish this blog, I am going to take down those unused ones and put them in my donation pile. And then my new obsession is going to be the search for the perfect travel mug, perfect reusable water bottle, and perfect bag to carry all of the things that I need in a perfectly organized fashion. That should keep me occupied for a few weeks!

Anyway, I got my drink (double, tall, soy latte in case you wondered) and went on my way. Beauty had had enough of the brisk walking, so we took a more leisurely pace. I forgot my cell phone at home, so I could not be tempted to check my email or post on facebook, so I just enjoyed the cool morning weather, the hot latte in my hand, and that fact that I feeling pretty darn good, especially after nine long hours at the cancer center yesterday, my first dose of chemo, and about 5 hours of sleep. Beauty stopped at a tree and found something especially interesting so lingered there for a bit. I watched her, wondering, like I often do what it would be like to be a dog and what she was thinking at that very moment. Then I started thinking about the chemo treatment of the day before and decided that I would blog about it when I got home. I wanted to write (inspired in part by a facebook friend's daily word count reports), but wasn't really in the mood to work on my memoir with so much new news in the forefront of my mind.

Beauty started to move on and so I turned around toward the side walk and there it was sitting right in front of me in the middle of the sidewalk as if it had been specifically placed there for me to see. One white and gray pigeon feather. I smiled immediately and felt Gessner with me. Most would probably wonder how a pigeon feather could have this effect on me, pigeons are gross, shit everywhere, and carry disease. But I always think of Gessner when I see a feather because of a story he told me from when he was a little boy. He used to hunt for and collect feathers and then would take them and try to sell them around the neighborhood for a nickel a piece. He was a born salesman and I can't imagine anyone being able to resist that smile of his. For some reason, I have always found this story so cute and smile a wide, cheesy grin every time I think about it.

Before I really had a chance to consider what I was doing, I picked up the feather. Normally I would tell Gessner not to touch feathers. That they are gross and probably have some sort of lingering disease that is going to cause him a stay in the hospital. But I didn't hear my neurotic warnings and instead picked it up, gently touching the front and the back, stroking it as I might stroke Gessner's hand, and then placed it carefully into the pocket of my hoodie.

As we walked back home I thought about the feather and what I was and was not going to do with it. First of all, I was going to scrub my hands immediately upon entering the apartment. Second of all, I was not, most definitely not, going to google anything about germs or pigeon diseases and refuse to listen to any well-meaning friends who insist on doing so. Then I thought that I would put it in a scrapbook or use it in one of the new mixed media pieces that I am working on. But when I got home and emptied my pocket, the feather was not there. I searched the bag I had my books in, my wallet and felt around the insides to see if it had gotten stuck somewhere. I walked back down the hallway and to the elevator, wondering if it had fallen out when I took my keys out of the pocket. But the feather was gone.

Mentally I was sad that the feather was gone because to me it was a message from Gessner, it was an embodiment of him. But emotionally I was still smiling because i had just encountered him and will have that encounter with or without a physical feather in my hand. I love these little reminders that Gess is still with me. For about the last month, I haven't felt him or seen him here and that made me very sad and lonely. But he came back. He was with me yesterday as I sat in my chemo chair and he met me on the street in Ballard this morning. These are what I hold on to now and file them away in my heart where he will always be.

April 13, 2011

One of the things that I have learned as a widow is that impending "big" dates are hard to deal with. Sometimes I think that the anticipation of the date is often worse than the date itself. In the beginning when Gessner died every Tuesday marked one more week after he passed and I dreaded Tuesdays. He died on the second of the month, so every month I dread the second. Then there was Christmas, New Years, our wedding anniversary, and Valentine's Day. The most recent "big" day that was coming up was Gessner's 34th birthday--or what would have been his birthday. April 13th.

In both my grief support group and in the books that I have read on grieving, people have a lot of different ways to deal with a partner's birthday. Some have a party, some hide in bed, and others pretend that it is another day. I didn't know what to do and racked my brain trying to figure it out. Finally I decided that I would just try to keep myself distracted and do what felt right. I had acupuncture and then coffee with a great friend. After coffee I had a few hours to wait before an art group therapy session, so I decided to do a little retail therapy.

I parked at University Village and started to walk toward one of my favorite places--Barnes & Noble when my cell phone rang. I didn't recognize the phone number but it was local and so I picked it up.

"Hello."

"Hello is this Lisa Worthington-Brown?"

"Yes it is."

"Hi Lisa, this is Dr. Browning from Swedish Comprehensive Breast Center. We got your pathology results back and I'm sorry to tell you, but it is cancer."

"Okay."

I sat down on a bench, grabbing a notepad out of my purse to take notes.

"Do you want to know what type of cancer it is?"

"Um, yeah..."

"Well, it's invasive ductal carcinoma. It's the most common type of breast cancer."

She went on to explain that the first step would be to see a surgeon and to say that they had set up an appointment for me. I took down the information, my head still spinning.

"Do you need me to call someone for you?"

"No, I'm fine. Thank you." Thank you? Thank you for turning my world upside down. I hang up the phone and then realize that tears are streaming down my face. I take a deep breath and start making phone calls, letting people know the news. I have cancer. Those words seem sharp and too big for my mouth. I hear that shock and hurt in the voices of my friends and family. Everyone has questions, and I have very few answers.

A stranger walking by stops and asks if I am okay and I quickly assure that I am fine. But honestly I didn't know what I was. I was in some sort of alternative universe and nothing made sense.

I couple of nurses called, each giving me more information which I dutifully wrote down in my notebook. I finished up my phone calls and went back to my car, forgetting about the book store.

I thought that the worse part about that day would be that it would have been my husband's birthday. But it was worse. It was a day when I should have been celebrating life with the love of mine, but instead was grieving and learning that my life was in danger. That there was tumor inside of me trying to kill me. And that I would have to face that tumor alone. Maybe I won't be here to dread his birthday next year. Or maybe I will have a bittersweet day of grieving for him and celebrating defeat over cancer. Or maybe it will be something else. I'm learning not to trust anything that I think that I know. I don't know life and it doesn't make any sense. I don't know how my husband could have died and how I could have gotten cancer within 6 months. I don't know how I'll be able to make it through this, especially without Gessner. So for now, it is one breath at a time.