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.

Surgery Scheduled

I was so nervous about going to the consult with my surgeon today. I had already decided what I thought was the right choice for me surgery wise and for some reason I was nervous that the doctor would fight with me about it. I know that this comes from the years that I spent fighting with doctors for Gessner and his health. I tried to tell myself that the surgeon had not given me any reason to think that he would not support my choices and my experience with the entire cancer team and hospital has been wonderful, but I was still very anxious. My good friend Sandy came with me for support.

The appointment went very well and there was nothing to be anxious about. A lumpectomy was not an option because my tumor is actually bigger than it was when I was first diagnosed. A lumpectomy was only a possibility if they were able to shrink the tumor. So, having a total mastectomy of the affected breast (the right one) was the surgeon's recommendation. He was also very supportive of my decision to have the left one removed as well. He understood my fear about another cancer in that breast and also the just the logistics of reconstruction, etc. I am a DD, so having only one breast until reconstruction would leave me pretty lopsided.

I am relieved that it went so smoothly and we are all on the same page. Surgery is scheduled for August 16th. The procedure will last a couple of hours and I will probably stay just one night in the hospital. They will have me up and moving around right away and doing range of motion exercises to make sure that my shoulders do not get locked up. I will have two drains placed to keep fluid from accumulating near the incisions. I will have to keep those in for about two weeks. I will have to restrict my upper body activity--no lifting, vacuuming, that sort of thing, but can otherwise be active. It will take about 6 weeks to be fully recovered.

During the surgery they will remove a number of lymph nodes on my right side and biopsy the sentinel node on the left side. I originally thought that I would have the sentinel node biopsy on the right as well but the surgeon prefers to remove the nodes because of the size of my tumor and the aggressiveness of it. They will test the nodes and whether or not there are signs of cancer will help dictate further treatment. They will also run pathology on Gertrude (the tumor) and that too will help determine if I will need radiation and/or additional chemotherapy. It takes about a week for those additional results. If additional treatment is necessary, I will have to wait about 6 weeks to fully heal from the surgery.

Then there is reconstruction. Sometimes they are able to do immediate reconstruction, but I am not a candidate for that because I may need additional treatment. The surgeon estimated that I will have to wait for about a year for reconstruction. It might be sooner if I don't need additional treatment. This gives me time to research plastic surgeons and procedures.

I'm relieved to have this scheduled and a bit nervous about the prospect of surgery. But actually I think that the surgery is going to be a lot easier than chemo has been. Plus, it will be really nice to have this tumor out! It has been growing at least in its outer dimensions. Right now it is nearly 10 cm (and I started out around 5 cm). The doctors are hopeful that the inside of the tumor is mostly dead and just the outer ring remains cancerous, but they won't know this until they take the tumor out. It has also been hurting, with increasing pain over the last couple of days. I am starting to have some limits to my range of motion with my right arm because of the tumor and the pain. So, it is time for Gertrude to go. Her eviction notice has been served and in less than a month, she's outta here!

I have my last chemo treatment on July 25th (this coming Monday) and then I will be taking a short vacation to Hawaii before surgery. All my doctors think that it is a wonderful idea! I'm hoping to relax and find some distractions. It sounds better than sitting around waiting for surgery (we have to wait a few weeks after chemo before surgery to allow my body to heal and my blood counts to return to normal).

This week has been a bit difficult for me. I've been so tired and have had never ending headaches. We aren't sure what is causing the headaches, but it seems to cycle with the chemo, so it is likely a side effect of that chemo or the nulesta shot. The brain scan was clear so it is NOT a tumor, so that is definitely good news. I had acupuncture today which helped a lot, so I have a little relief.

I miss Gessner so much right now--it is really hard. I am lonely and just want to have him hold me.

I know that it will be okay, but these days are just rough.

Cancer update

I was diagnosed with breast cancer exactly 3 months ago. Wow, so much has happened in such a short time! I had my 3rd round of AC on Monday and doing pretty well so far this week. I've been fatigued, but not quite as badly as I was after the last dose. Hopefully that will continue, but I am trying to take it easy. I only have one more round, which will happen on July 25! I can't wait to be done with this stage!

My oncologist ordered one more breast MRI and a brain MRI. I had the breast MRI today (#4 in 3 months!). I got to look at my scan and it looks like the tumor is about the same size as it was when I was first diagnosed. The means that it has shrunk since the last MRI, but also means that overall it has not shrunk much if at all. Of course, I am not a radiologist and am just guessing based on my what the MRI film looks like--we'll get the report in the next couple of days and know for sure.

I'll have the brain MRI tomorrow. The oncologist ordered it because I have been having a lot of headaches and he wants to make sure that the cancer has not metastasized to my brain. He says that it is unlikely, but he wants to be thorough. I am glad, though I am not thrilled about another MRI. I think that after this MRI, my ankles and toes are the only body parts that haven't been scanned!

After we get these scan results back, it will be time to meet with surgeons. I have met with one surgeon so far, when I was first diagnosed. At that point we decided that we should try chemo to shrink the tumor down. Again, on my guess, the tumor has not shrunk at all or at least not enough to make a difference. I do have one more round of chemo, so more shrinkage could happen. But, at the same time, I will have to wait for about 3-6 weeks after my last chemo dose before surgery, so my tumor could grow more (it grew during my 3 weeks on Taxol before). Who really knows!

I have thought a lot about what I want to do surgery wise and have done a lot of research. I have decided that I want to have a bilateral mastectomy, getting rid of both the cancerous breast and the other one. There is research supporting this decision based on my age and the type of cancer I have, but there is also research that would support a less aggressive treatment. For me, it comes down to not wanting to worry about recurrence and to keep my chances of that as low as possible. My tumor has proven itself to be aggressive and recurrence rates are generally measured in a per-year risk, meaning that my risk over my lifetime may be significant--or at least more significant than I am willing to risk. The anxiety and stress that worrying about it is not something that I want to have to deal with. I have thought about this for 3 months and done a lot of research and feel that this is the right decision for me. So, unless the surgeon has some powerful information to change my mind, that is what my plan is. I do plan on having reconstruction as well, though it will likely not be immediate. These surgeries are scary to me and will be a lot of work and recovery, but it seems like the right choice for me under the circumstances.

I am anxious to talk to the surgeon and get things set up, but am worried about all that is ahead of me as well. It is unclear whether I will need radiation or additional chemo after surgery. So, my mantra is one breath at a time.

Fun memories

I found myself talking a lot about Gessner yesterday. First at the cancer institute while I was there for chemo and the various appointments that are associated with that and then with a friend. She played a voice mail message that she had on her phone from him, trying to plan a belated birthday party for me. Unfortunately we never got to have that party, but he was sure excited about it. We both ended up in tears at that point, but the happy-sad type that aren't so bad.

Here are a couple of great stories (in my opinion at least) that I have about Gess from our early days together.

One weekend after we first started to flirt seriously I went out of town with my girlfriends and we took a long horseback ride that resulted in my getting pretty sunburned. When I got back to the dorms after our trip, I found several messages from Gess and called him back. We talked for awhile and I recounted the details of my trip, including my sunburn and he said that he had something that worked great on sunburns that he could bring to me. So we said that we would meet up in front of the chapel on campus. I went as I was--in plaid, Dr. Seuss boxer shorts and an old purple t-shirt from a campus event at my previous college. I probably didn't have any makeup on (I rarely wore it) and wore my hair down. I arrived at the chapel and waited and waited and waited for what seemed like an eternity. Finally I could see him walking down the sidewalk toward me. As he approached I noticed that he took much more care in getting ready for our meetup. His hair looked wet and freshly combed. I could smell a new application of cologne and see that his clothes were much less casual than mine--nice jeans with a polo shirt tucked into them and a leather jacket. Oops! I guess we had different ideas about what the meeting was for :) He gave me a bottle of solarcaine and we walked around campus a bit.

During one part of our walk he accidentally stepped right into the sprinkles (you see, I think that all of this proves just how smitten he was with me). I laughed, of course, and in retribution he picked me up and carried me into the sprinkles (I was much skinnier back then!). We laughed and he eventually walked me back to my dorm.

I ended up getting a cold and was sick the next day. When he found out he sent flowers to me. They were in a red M&M "vase" and had a pack stuck to them. The flowers were an assortment of reds and yellows and the card said "Get Well and Sorry for getting you sick last night"--though I am sure that getting me wet had nothing to do with the cold. But, suffice it to say, I was pretty smitten too.

A few weeks later we were "studying" in a small restaurant on campus with some other acquaintances. We were eating stuff like french fries and nachos and drinking soda and occasionally working on homework. Gess and I were sitting next to each other, of course--and at one point Gess says to me, "Hey Lisa, look." So I turned my head and to look at him as he takes an empty Pepsi can and attempts to smash it using his forehead. The can did not crush, however, and instead cuts him in two places! The entire table started laughing and he made some remark about how he had done it a thousand times before. I'm still not sure why he thought crushing a can on his forehead would impress me, but I am positive that the failed attempt had a better result than if he had succeeded. For some reason I thought that it was cute and to this day, 14 years later, I smile every time I think about that night.

I miss this guy so much, but am so grateful to have so many happy (and crazy memories)!

Baby Steps

Today is the first day since my second round of AC (Adriamycin and Cytoxan) that I feel pretty good and have been able to get a bit done. Today my professional organizer extraordinaire Kammie came over and worked on getting this apartment in shape. It's amazing what a mess I can make when I am sick! I decided to work with an organizer after I moved into the new place and had to scale back to a much smaller place and deal with Gessner's stuff, etc. In a wave of self-care, I hired Kammie to come over once a week and help out with house stuff and organizing. It feels so self-indulgent, but I am finally admitting that I actually need help and Kammie is amazing at her job, so I think that it is a win-win situation.

Even with feeling better, I still don't feel great and dread my next chemo treatment. So I am reminding myself that I am taking baby steps. Each day, a little further. So, here's to baby steps...and great professional help!

Fourth of July

I try not to think about my life with Gessner with regrets. There is nothing that I can do now to change how things happened and reliving my "mistakes" or "missteps" just hurts. But there are times when that is hard and today I find myself regretting that I didn't embrace his love of fireworks and the 4th more. For some reason Gessner loved the 4th and fireworks. I'm sure that there is not a person that knew him well as a child who does not have a story about him involving fireworks. On one of my first trips to Colorado with Gessner he and his friend Tim spent the evening shooting roman candles at each other. I was terrified. I also remember driving through Wyoming on our way back to college and stopping at a fireworks stand in the middle of winter. We always stopped when we went to South Carolina and he would spend more money buying explosives than I liked.

I remember one 4th we went to Virginia to visit his stepmom's family. He brought a bunch of "big" fireworks with him and we sweltered in the Virginia heat while we watched the guys set them off over the water. Another 4th we went to a concert in the park in Winston-Salem where the symphony played and then the grand fireworks were choreographed to the music. It was just Gess, his dad, and me and we melted in the heat and had to deal with people everywhere. It was okay. Still, I would have preferred to stay at home in my air-conditioned apartment, enjoying the semi-quiet.

After we moved to Seattle I started to be less amenable to 4th festivities. I am not sure why--I don't like fireworks, they scare me and I don't deal well with crowds. I was always so nervous and decided that it would be more fun for both of us if he went out with his friends alone. Now I wish that I would have shared those days with him or made more of a compromise since he loved them so much. But maybe it was best--he could have fun with his friends and set things on fire, and I could feel safe in the quiet of my own home. I don't know. This is why I try not to question the past. It happened the way it did and there's no way to change it. But today I feel particularly sad, knowing that he loved this holiday the most and he isn't here to celebrate it.

Picture taken by Gessner