Still can't believe I don't have boobs!

A thought just occurred to me: I don't have boobs! It is so freaking weird. That's it.

He could always make me smile

One thing about Gessner was that he was just a big kid at heart. He loved to make people smile and laugh. Just about everyone who met him had a great story to tell about him. I have so many. I need to start writing them all down!

Here is one of the best pictures of Gess. We were a part of a group of friends, affectionately called The Ballard Mafia (Ballard is the neighborhood that we live in). We also happen to be friends with an amazing photographer (Clane Gessel) and he did a group photo shoot at the Olympic Sculpture Garden. As part of the shoot, we decided to wear ugly Christmas sweaters. We scoured the thrift stores for the best and Gess chose this too small vest and turtleneck!

A year ago

A year ago we were getting Gessner ready for a procedure on his liver. We were getting ready for his father and step mom to visit. We were worried about the procedure because it was risky, but I never would have believed that he would be dead in 2 short weeks. How could that even happen? Cystic fibrosis sucks and it can take someone in an instant. My husband was healthier than many people with CF that I know and then one bad turn and he was gone. Even though it's been nearly a year, I am still in shock at times. I still look around and wonder where he is. I wonder when he is going to come home. I wake up and temporarily forget that he is gone. Those days are getting fewer, but they are still there. I miss you honey and would give anything to have you back.

Survival Mode

I was out walking Beauty and thought to myself "Whew, I survived another weekend" and realized that I am constantly thinking in terms of survival. Not in a life-and-death physical way, but in an emotional, mental way. By an objective standard my weekend was pretty good. I had dinner with a friend from college on Friday night, pedicures with new friends on Saturday, and breakfast with a different friend from college on Sunday morning. Add to that, naps, reading, french lessons, delicious garlic chicken pizza, and decent weather and it would seem to be quite a good series of days. But all of these are clouded by the emptiness I feel, with not only losing Gessner, but losing a lot of myself. There are days when I look in the mirror and do not even recognize the person looking back at me. When did I become this empty shell? I canceled a photo shoot today with an amazing photographer (Clane Gessel) because I am scared to see what I actually look like through a lens.

I'm so broken and don't know how to even begin to repair or heal. Everyone says that it will happen, that it will take time, etc., but I really wonder if I can make it. It's been almost a year since Gessner died--11 months, 14 days, 4 hours, and 7 minutes to be more precise--but it still feels like it can't be true. I can't be a widow. I just can't. I can't do this without him and honestly I don't want to. I never thought that I would be a person that would say something like that--I always considered myself to be so independent, but right now it just hurts too much and I have nothing left to fight for. I am so tired of just surviving and fighting through every day.

And I can't say this to anyone. Because if I do, they worry about me or try to make me feel better. I look at the pain in my friends' eyes when they see me cry and it breaks my heart. I hate that I hurt people just by being alive and there isn't a way to not hurt them. But I'm selfish and I want them. I don't want to be alone. But in reality I am alone. I am surviving, but just barely.

Here is a poem I picked up somewhere along the way that is comforting to me at times. I do think about Gessner often and even talk to him. I miss him every single day.

Henry Scott-Holland, 1847-1918, Canon of St. Paul's Cathedral

Death is nothing at all

I have only slipped away into the next room

I am I and you are you

Whatever we were to each other

That we are still

Call me by my old familiar name

Speak to me in the easy way you always used

Put no difference into your ton

Wear no forced air of solemnity or sorrow

Laugh as we always laughed at the little jokes we always enjoyed together

Play, smile, think of me, pray for me

Let my name be ever the household word that it always was

Let it be spoken without effort

Without the ghost of a shadow in it

Life means all that it ever meant

It is the same as it ever was

There is absolute unbroken continuity

What is death but a negligible accident?

Why should I be out of mind?

Because I am out of sight?

I am waiting for you for an interval

Somewhere very near

Just around the corner

All is well

Nothing is past; nothing is lost

One brief moment and all will be as it was before

How we shall laugh at the trouble of parting when we meet again!

Preparing to Live or Preparing to Die

This has been a rough week. I can't stop thinking about the possibility of having Stage 4 cancer and what that means. Well, or at least what I think that it means. Even if it is stage 4 there is no guarantee that I will die soon, it is even possible that I can be "cured" (with cancer you are considered "cured" if you are "cancer free" for 5 years). But, if I am stage 4, the odds are against me. So, what is a girl supposed to do? Should I start making a bucket list and doing those things? Should I spend all of my money traveling and doing things that I want to do? Or should I plan for a future? The reality is that for now I am in a sort of limbo and have to just wait and see. I will wake up in the morning and go to bed at night. I will take each day as it comes and just try to make it through one day at a time. As cliche as that sounds, it is the only way that I can get through this right now. Perhaps I will get some guidance from the doctors at some point or my body will tell me what is going on. So for tonight I accept that there is nothing that I can do about this and I'll pick up the battle tomorrow.

Update

Well, it's been just over a month since I had my bilateral mastectomy. The surgery went well and I am actually feeling really good physically right now. Probably because Gertrude is no longer trying to suck the life out of me and the doctors are not giving me regular doses of poison. My wounds are not healing as quickly as we would like, however, so radiation has been pushed back a couple of times. The soonest I will start is in 2 weeks, but my guess is that it will be longer. While I enjoy having days when I feel good and don't have to do treatment, with each day that I wait, the end date of active treatment is pushed back. I was hoping that I would be done by the end of the year, but after talking to my oncologist today, it is looking like February will be the earliest.

As soon as my chest wounds heal up I will start radiation along with an oral chemotherapy agent. I will do radiation 5 days a week for 33 treatments and will take the oral chemo every day one week on and then one week off. After radiation, I will start additional chemotherapy, adding two IV agents to the oral one. The IVs will be two weeks on, one week off for about 3 months.

The big wild card in all of this is a spot on my rib. Before I started chemo the first time I had a PET scan to check to see if there was cancer anywhere else in my body. The scan showed a spot on one of my left ribs. To give the doctors a better look I had an MRI, which was inconclusive. I had been skiing a few weeks before and had fallen A LOT (it was my first time) and so we thought that it was possible that it was a bruised or fractured. So, I did chemo and had surgery and then we did another scan and the spot is still there.

I had an MRI on September 9th and the report states: "Signal abnormality and surrounding edema persist in the left anterior third rib. Given the persistence of this finding and the bone scan abnormalities and the time, the possibility of metastatic disease to the rib is very real. I would have expected the healing process to have substantially resolved during this time, and the signal abnormality within the medullary portion of the rib is worrisome." What this means is that the cancer may have spread to my rib, but we aren't sure. One of the problems with this is that there is no easy way to test to see if it is cancer. In order to take a biopsy, I would have to have surgery. And right now, surgery would not be good for me because it would further put off treatment. Also, the treatment would be the same if we did find out that it is cancer--we are going to radiate the area and hope that it goes away.

The hard part for me is that if this spot is cancer, then I have Stage 4 cancer and that is very difficult to cure. I asked my oncologist point blank this afternoon if I was going to make it out of this alive and he said that there are no guarantees, but that he is encouraged by the surgical findings. He said that if it is Stage 4 we may not be able to cure it but that I might still live for several years. Cancer is considered "cured" when you are cancer-free for 5 years. I really do hate not knowing if this rib thing is cancer or not, but surgery just isn't a good option now. And I'm not sure how I would deal with that information if it came back as cancer for sure. I've been able to fight, in part because it seemed likely that I would be cured. When I was first diagnosed, we thought that I was Stage 2, which has a good survival rate. Now we know for sure that I am Stage 3 and possibly Stage 4. I know that these are only numbers and I shouldn't focus on them, but it is hard.

I'll have another scan after radiation, so we'll have some more information about the rib then. But for now I just have to wait and hope that it is not cancer or that if it is I can still beat this. I told my oncologist that I am going to be pissed if I went through all of this and still died and he said that he will be too. I am thankful to have so many people pulling for me and to be in really good hands.

Changing

I find myself changing in so many ways. I wonder if my friends can see it. Of course there are the obvious physical changes. From my signature long, blonde, curly hair, to peach fuzz and from DD to nothing...those are obvious changes and you would have to be blind not to notice them! Some are more subtle--the lumps under my arms, near my back where the incisions have pushed tissue together in an unnatural way. The swelling that is subtle, but annoying. The gnarly incisions that sometimes peek out of the top of my shirt. The mastectomy camis (that are so unfashionable) that I wear to house my drains (and those drains that hang around my midsection. I'm having a harder time with the physical changes than I had anticipated. Perhaps because before I would have had Gessner by my said tell me that he loves me know matter what and that I am beautiful to him. I'd have a hard time thinking that even he could find this mess attractive, but would take solace in knowing the his love for me was unconditional. I do wonder if he saw me on the street today if he would recognize me. My hope is that my face was so ingrained in his memory that he could never forget me. But at the same time, I feel so disfigured that I don't how anyone could look at me with love.

Before I really didn't care much about how I looked. I wore clothes that were comfortable and go the job done, but really didn't think in terms of fashion. Now I am obsessed with fashion and want to be stylish--in my own quirky way. I yearn to have a sense of style all my own and own clothes that fit that style and that fit me--the real me, not just the physical me, but the essence of me. Perhaps it is because I never really had time to think about this before or because I always thought that it was a bit self-centered and vain that I didn't do this year ago. But for whatever reason, I long to find my style and own it. The irony, of course, is that I look worse than I ever have and so the chances of me actually achieving any of this are slim to none.

There is also a part of me that wants me than I have ever wanted before. I think that deep down I wanted these things when Gess was alive, but my need to care for him overrode those wants. Some of the wants we shared, but I think that we both knew that they would never come true. We knew that we were dreaming beyond Gessner's lifetime, but there was some comfort in that. I wanted to believe that we would be old, sitting on rocking chairs on our porch together so much. A times I think that I thought that if I believed it enough it would come true. But of course, deep down I knew that it wouldn't come true. But now, the world is open to me. Or, at least the world was open to me before my cancer diagnosis. I am not sure how I should feel about this one--if I should just assume that the cancer is a bum in the road and I will be able to go on with my life as soon as I get through these hoops or if I should believe that I am not going to make it and put my affairs in order?

Part of me wants to make a big move--do something BIG and take a chance. While another part of me wants to find a corporate job and maybe get on the partner track and finish what I started.

I am so young and have so much life ahead of me--assuming that cancer doesn't take me out--and I feel such heavy responsibility for the decisions that I will be making in the coming months. Cancer will eventually finished with me--with me being in remission or dead--and I need to prepare for that. I need to try to figure out what my next steps are going to be. But honestly, I don't know how. I am so used to having another person to help me make big decisions and to be my cheerleader once those decisions had been made. Gessner was an amazing cheerleader. I still remember the look on his face when I got the phone call about my first job as an attorney. He looked like a guy on a game show who had just won the biggest prize with his eyes wide open and is mouth agape in an amazing smile. His arms were wide open, waiting to embrace me and I think that he may have even jumped up a little. Right in the middle of the eye glasses store. Now I am on my own and have to cheer for myself. I know that true validation needs to come from inside, but it certainly does help to have someone on the outside to help you along.

Big changes are coming and I'm very scared. I feel like a failure in life and that I am floating around with no life vest.

Happy Birthday Dad

Today would have been my dad's birthday. Miss you!

The Beach

I love the beach, especially the Washington and Oregon coasts. I'm not a sunbather (I burn so easily), but there is something about the sound of the waves and the way the sand feels against your feet. The Washington and Oregon coasts are different from other beaches that I have been too. The Pacific Ocean is fierce and the water is cold. I think of these beaches in terms of fleece and fires as opposed to bikinis and crowds.

This weekend I decided to get away to Ocean Shores, Washington. I chose this location because it is close and there were available hotels for last minute reservations. It is relatively quiet here. I'm not sure if I would prefer to be in a quiet place or in a big crowd. Every place feels lonely to some extent, simply because Gessner is not here. I wonder how long that will last.

Today I ended up spending a lot of time in my hotel room because I had a headache. But I did get out in time to see the sunset at the beach and I'll admit, it was quite beautiful. The walk on the beach was bittersweet. I loved feeling the sand under my feet and the cold water rush up around my ankles. I love the smell in the air and taste of salt on my lips. But I missed having Gessner's hand to hold and missed hearing his laugh. The last time we were here we had a great time, just hanging out and laughing. We rented a moped and drove it down the beach. We built a fire at night and made smores and drank wine on the beach. Gess and I often took little trips like that--he was so spontaneous and really drew me out of my comfort zone to just get out. I am so thankful for that. He lived more in his 33 years than some people live in 50-60 years.

This picture is for your babe!

Ten Months

10 months ago yesterday I had to make that decision that no wife wants to make and instructed the doctors to take my husband off of the ventilator. I know that it was the right decision--his body was shutting down and he wasn't going to get better. But there is still a part of me that wonders if something would have changed if I gave him just a little more time. Gessner was always the "comeback kid." A couple weeks before he nearly died during a procedure and he was up ready to get out of the hospital the very next day. He was always beating the odds and surprising everyone. What if he just needed a little more time to comeback? I actually felt like he was already gone, at least his spirit was, but I can't shakes these doubts.

This week a friend asked me if it gets easier as time passes. For me, it hasn't. It is just different. I still hope that I am in the middle of some horrible nightmare and that I will wake up and find him in bed next to me. I still have nightmares about his death and I still plead with whomever is in charge to let him come back. I hope that it will eventually get easier--and I am sure that it will. But for right now, it is still horrible.

Emotional Mess

I have been an emotional mess the last week or so. I am exhausted from everything and am so tired of fighting. I have heard so many times recently that I am a "trooper" or an "inspiration" and I just don't get it. I feel like such a failure most of the time and am so tired of putting on the happy face. If I let people know that I am not doing well, it hurts them, so it is easier to just say that I am okay and cry alone. But, honestly, I am not really okay. I miss Gessner so much at times that I feel like I am suffocating. I cry every time I look at my chest and feel like I have been mutilated. The thought of going through more cancer treatment nearly causes a panic attack every time I think about it. And I am scared of what my future holds. I am scared that I am not going to be able to find a job when I am done with this and that I am not going to be able to make it without Gessner.

Pathology Report

After surgery, my doctors sent my tumor and breasts to a lab to be analyzed. I got the results yesterday. Here are some details from the report:

--80% of my tumor was dead tissue! This is great, considering how large the tumor had gotten (9.7 cm, or about 4 inches).

--Out of the 15 nodes they took out of my right arm, only one was positive for cancer and that was only microscopic.

--My left breast and left sentinel node were completely clear

--The cancer had spread into my chest wall, so that is the bad news. But, I was already slated for radiation, so that will take care of that.

My oncologist was very happy with this report. I will be meeting with my surgeon tomorrow (Wednesday) and the radiation oncologist on Thursday. The three of them will discuss the situation and come up with a recommended plan of action. I'll see my oncologist next week and then as soon as I'm healed from the surgery, I'll go onto the next step.

I am so relieved that this was good news. I really needed it this time. I've had too much bad news for awhile.

Bilateral Mastectomy

I was diagnosed with breast cancer on April 13, 2011 and it has been a crazy, hectic ride since then. A lot of women with breast cancer have surgery very soon after diagnosis. In fact, my first cancer-specific appointment was with a breast surgeon. In my case, we decided that chemotherapy first was appropriate, so I was sent to a medical oncologist. After my course of chemo, we waited for 3 weeks for my body to heal before surgery.

I checked in to the hospital at 5:30 am the morning of my surgery (August 16th). I was anxious and was told my the nurse not to take my anti-anxiety medication that morning because the anesthesiologist did not want me to. (I told the anesthesiologist this and she said that I should have taken my anti-anxiety medication and said that she would look into why I was told not to take it). Anyway, I checked in, accompanied by my father-in-law (Tom) and my good friend Sandy. The receptionists where a bit on the slow side and the nurse came out to get me before I was fully checked in. After the paperwork was filled out, I was taken back to the pre-pre-surgery room. I could have one visitor with me at a time so Sandy sat with me and Tom sat in a little waiting room right next to us. I answered a bunch of questions about medications and why I was there and then changed into the fabulously unfashionable hospital garb. Tom came in for awhile too and we basically waited.

Eventually they took me back to the pre-surgery area and Sandy came with me, while Tom went back to main waiting room in the hospital lobby. The waiting in the pre-op area was the worst, but Sandy tried to keep me at ease with humor and she mostly succeeded. It was hard to be there without Gessner sitting beside me, but I really tried not to think about that. The anesthesiologist came to chat with me and ask some questions and answer any of mine. The only thing I asked is how my eyes might get injured (it was a warning on the anesthesia consent form) and I'm pretty sure she had never gotten that question before. (The answer was that if your eyes opened for any reason something could get in them, so they usually use tape to keep them shut). She was very nice and encouraging. My breast surgeon also came over and chatted briefly as did one of the nurses who would be in the OR.

I was in the OR at 7:30 am and they got me on the table and the next thing I know I was wake up in recovery.

I actually don't remember a lot about the hours after recovery, but that means they gave me the appropriate drugs :)

What a difference a year can make

This summer has been difficult for me. Not just because of the cancer (though that has definitely been a challenge), but also because I keep thinking about what we were doing this time last year. I think of last summer as the beginning of the end. Of course, at the time I didn't think that it was the end, I thought that it was just a bump in the always bumpy CF road.

In July we went to Colorado to visit Gessner's family. He was too sick to go and I tried to convince him to postpone the trip, but he insisted. He said that he wanted to make sure to see his grandmother in case something were to happen to her. It makes me wonder if he knew or felt something, but I don't think that he did. I think that if he did he would have done more "wrapping things up." Anyway...we went to Colorado and had a good visit with his family, including celebrating our niece's birthday.

(Gess and Hannah posing with tutus and tiaras)

But, Gess's health did not do well and he ended up in the hospital. It was scary to be in a hospital in a smaller city, with doctors that have no clue about CF. Gessner's oxygen saturation levels were way too low. He had to wear oxygen 24/7 while we were there. (Gess wearing 02)

After we got back to Seattle, Gess continued to use o2 much more frequently than he had before. It wasn't quite 24/7, but he needed frequently. He stopped working, which was HUGE for him. Gessner loved to work and worked way more than I wanted him to. I think that part of it was to prove that he could do it in spite of CF and to prove all of those people who said that he wouldn't live to be an adult wrong. And man did he prove that! He was an amazing man and did so much in his short life.

The reason for him taking time off from work was because he started the lung transplant evaluation process, which requires a lot of tests and appointments. I was actually a bit surprised when he decided that he wanted a lung transplant. He always said that he didn't know if he would want one or not, but I always felt that he wouldn't want to go through it. I'm not sure why, it was just a gut feeling. But, when the time came, he didn't want to live like he was living with the increased limitations, so transplant was his only option for going back to a more "normal" life. His lungs were not bad enough for a lung transplant under normal circumstances, but he had liver involvement too, so it changed the landscape a bit.

As we went through the transplant process I started to have hope that he would get better and I certainly didn't think that in a few short months he would be gone. I keep going over and over those months in my mind and looking for something that I could have done differently. What if I didn't let him go to Colorado? Would that have made a difference? Was I nice enough to him and supportive enough? Did I give him enough of myself? Did I make him happy? I know that there was nothing that I could do, but I can't stop these thoughts. Or the flashbacks and nightmares. I wish that I could.

In less than a week...

In less than a week I will have no breasts. I just can't quite wrap my head around this. I know that it is necessary--I want this cancer out of my body now--but I am scared of the after effects. I have done pretty well without having hair for the last couple of months, but now we are talking about body parts. And body parts that are viewed as "essential" parts of being female. I know that I will still be a woman without my breasts and that I will eventually have reconstruction, but I am not sure how I am going to deal with the emotional upheaval that is sure to follow.

I feel so broken right now. I am 33 years old and am a widow, a cancer patient, have no hair, will be permanent disfigured after my surgery on Tuesday, no career. In sum, I'm damaged goods.

Getting out of here!

I am being discharged from the hospital today--yay! I am so happy to be going home. I have been here from 3 days and that was long enough for me. I can't imagine the long stays that my CF friends have to do--but I guess you do what you have to.

I am still pretty anemic, so my oncologist gave me the option of staying for another day and getting a blood transfusion. He also said that we could take a look at my labs in a few days and then do a transfusion on an outpatient basis at that point. I decided to take the outpatient route. He said that the main issue I might have is being tired. And then because I have surgery coming up, I want to make sure that everything is okay for that. I am going to call my surgeon and discuss the issue and then get a transfusion next week if necessary. In the meantime, I guess I'll have a steak and spinach for dinner :)

Surgery is only 12 days away and I'm feeling a bit anxious about that. It is going to be so strange to wake up with no breasts. But I am ready to get this tumor out of me. I'm sure I'll have more rambling thoughts about this in the future.

Hospital

I am currently admitted in the hospital. This is my first "real" hospital stay--the only other one being a one night recovery stay after my emergency gall bladder removal. I also spent countless nights as a "visitor" in the hospital, but it is quite a different experience when you are the person in the bed.

Chemotherapy--particularly the regimen I am on--can wipe out a body's white blood cells. Part of the job of WBC is to help the body fight off infection. In order to help boost WBC, I get a shot of neulesta to help my body rebuild its WBC. With the first 3 doses of AC, this was sufficient. For the fourth and final dose, apparently not.

On Sunday I started to feel pretty crappy, so I just hung out at home and took it easy. On Monday morning I had to go to see my oncologist and I started to feel increasingly sick during the drive from home to the clinic. By the time I got there I felt awful. Apparently I looked awful too because the IV nurse suggested leaving my port accessed in case the oncologist wanted to order fluids (normally I would have been deaccessed immediately because I wasn't getting treatment). I vomited twice before I was able to see the doctor, again, not a good sign. By the time I got back to see the oncologist, his face said it all and I knew before he opened his mouth that I would not be going home. My WBC were too low--near zero--and he was afraid that I had an infection. I had a fever and also had lost 6 pounds in 6 days (which would normally be cause for celebration for me, but I wasn't trying and didn't even know).

Before I knew it, I was wheeled into room 801 and put in a fashion-deficient gown. It hit me that the last time I had been in a hospital room was 9 months ago when Gessner died. Even though this was a different hospital, I couldn't stop the tears and I spent my first few minutes of my admission crying. The nurse came in and I felt compelled to explain. He was very understanding and sympathetic, which I appreciated. I pulled myself together and answered all of the questions and let the nurses get me settled in. They started IV fluids and the doctor ordered IV antibiotics. They took me down for a chest xray and drew blood for blood cultures. These are all of the same tests and procedures that Gess went through when he was admitted--although much more efficiently and competently here.

My first night in was okay--I slept intermittently and had some weird dreams, but it wasn't too bad. The first full day was mind-numbingly boring, but I didn't feel much like doing anything and couldn't even muster the energy to waste hours on the internet. I did start to get restless and found myself arranging and picking up in the hospital room. Gessner used to do this with some regularity and I really never understood his need and seemingly intense drive to do this. But now I completely understand it. At some point after sitting in the bed doing nothing you just have to get up and do something productive--anything productive, even if that means restacking reading materials and folding your socks.

All of these little reminders of Gessner and flashes of his mannerisms and routines make me feel like he is here with me. There have been times when I have been pretty angry that he is not here to go through this with me and times when the same thought makes me very, very sad. But when I have these glimpses of him I find some comfort in feeling that he IS here with me or that all of the years of hospital stays with him readied me for specifically for this. It makes me feel a little less lonely and a little less afraid.

Personal Disease Perspectives--Blogger Challenge

My friend Piper just posted a blogger challenge on disease perspectives and I decided to chime in from the perspective of a spouse of someone with CF and also as a cancer patient. Here's Piper's challenge and full post. Here is her specific challenge:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog. She also opened it up to non-CFers, which is where I come in

Life as a CF wife

It was hard watching my husband struggle with CF and the issue of "compliance" was often a prickly one. There were times when I would get really upset with Gessner for not doing his treatments and there were times when I wondered if he would less sick if he was more diligent about treatments. He worked too much and sometimes took chances with his health. He fought with his doctors and sometimes pushed the envelope. It was frustrating to watch and honesty it scared me. But it also let him live. He chose the terms of his life as much as he could. He chose what he saw as a "quality" of life at the expense of treatments sometimes. Other people might disagree with those decisions, but the bottom line was that it was his decision and so it was the right decision for him. I do wonder if he would still be here if he had been more "complaint" or more conservative. But, that wouldn't have been Gessner and that wasn't the way that he wanted to live.

I think that each person has to figure out the balance that works for him or her individually. For some, it is doing everything possible to try to be compliant and follow doctor's orders to the letter. For others, it is less strict and is more about making the rules. Neither is right or wrong--each person has to do what is right for them and I think that doctors, family members, and friends need to respect those decisions. I know that it is hard because as witnesses to people suffering from this disease, we feel so helpless and pushing compliance is a way that we can feel more in control. But the bottom line is that there are no guarantees with CF and everyone has to make the most of out life, whatever that means to that person individually.

As a cancer patient

It's quite strange to go from being a caretaker and wife of a person with CF to a cancer patient in just a few months. Experts guess that cancer is lurking at least 5 years before it shows up, so I have had it for some time, but we never had any clue. One of the most difficult things for me to hear from people is that they are not surprised that I have cancer after what I have been through. I understand where that thought comes from--there is evidence that stress and particularly feelings of helplessness can contribute to cancer--but at the same time it makes me feel like people think that I caused my cancer or let it happen to me. Yes, I have not been the most healthy, but I am freaking 33 years old and I just can't accept that this disease is my fault.

I have been a pretty compliant patient, but have not done everything possible to fight this. I still eat sugar and meat. I had someone recommend that a fast for weeks--I'm not doing that. I haven't done any juicing yet. But I do listen to my oncologist and do my treatments. I walk and do my exercises. I see a variety of therapists and I try to listen to my body. I sleep when I feel like I need to and am getting better at asking for help. Am I the perfect patient? Probably not. But, I am doing what I can and doing it the best that I know how. Will it be enough to beat this? No one knows, but I hope so. Should I be judged for not doing more? Nope. All anyone can do is what he or she decides is best. You can consult the experts, but at the end of the day the decisions have to be right for you. Sometimes that means bucking the system. Other times it means toeing the line. Most of the time, it is probably somewhere in between.

I have been fortunate to have a support system and care team that supports me completely and I do not feel judged for my decisions. I feel like I am taking advantage of the expertise and programs available, but also trying to manage my life and still have one in spite of a cancer diagnosis.

Sunday Traditions

Sundays have always been a day of traditions. When I was a kid, it was always church, a "Nazarene nap," choir practice, and more church. When I met Gessner we adapted our traditions a little. At first it was church and then Olive Garden for lunch. After we got married, we went through a phase were we spent Sundays in bed after church, watching movies, ordering pizza, and just relaxing. More recently, a typical Sunday included brunch and a visit the farmers market in our neighborhood. Sundays were usually a day we spent together relaxing in preparation for the start of the work week. I loved our Sundays together and looked forward to them.

Now, I feel a little lost on Sundays. I don't have a routine and my old routines make me a little sad. This morning I woke up with an overwhelming sense of sadness and dread. It was another Sunday without Gessner. Fortunately a friend invited me to go to the farmers market with her family and I ended up having a decent day. I cried a little and laughed a lot. I got some advice from a "witch doctor" on how to treat my cancer and I took a nice nap. Now I am sitting at home watching a movie and trying not to think about chemo tomorrow or my upcoming surgery or the fact that I am sitting her alone. I know that it will get better in time, but right now Sundays are really difficult.