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

Hard round of chemo

This round of chemo has been worse than the rest. Mostly I have just been exhausted. I have pretty much slept for 2 days straight. I don't like being so tired or feeling so sick, but I guess it is par for the course. Hopefully it means that the chemo is killing the cancer.

What little is left of my hair is falling out in clumps. I am glad that I shaved it so that the clumps are small, but it is still hard to see it.

I miss Gessner--seems like more each day. I thought that it was supposed to go the other way around with it getting easier as time passed. I feel so alone

New blog title

Breathing is something that we rarely think about, unless we can't do it. "Breathe" is a common tag line for people affected by cystic fibrosis. In fact, I have a "breathe" tattoo that I got in honor of my husband last summer. My sister-in-law and a friend also got breathe tattoos at the same time for my husband.

Gessner thought a lot about breathing and I thought a lot about his breath as I would lay there awake watching him breathe in and out as he slept, watching his chest expand and contract, listening to the sound of his lungs taking in oxygen. I routinely listened to the depth of his breaths to gauge how he was feeling and to see if something was wrong. I'd hear him gasp for air when he was sick and needed oxygen. I'd listen for wheezing or shallow breaths and any change to his breathing pattern. At the end, a ventilator breathed for him and I would watch it as is pumped oxygen into his lungs. Every minute he would breathe an extra breath on his own--in my mind a tribute to his fighting nature. And then as the ventilator was removed, I watched as he took his last breaths. Slow and peaceful, to my great relief. I'll never forget those last breaths, the end of the body that held the love of my life. In a lot of ways, the end of my life.

I have a habit of holding my breath when I get anxious or nervous and sometimes even when I am working out. So, I need to be reminded to breathe sometimes. There are also times when I miss Gessner so much that I literally feel like I cannot breathe. He was my oxygen in so many ways, and now that he is gone, I have to find another source. I have been told by a couple of massage therapists that I do not know how to breath properly, referring to not breathing with my diaphragm or expelling all of the breath properly. I'm starting to think that they may be on to something. So, I am setting out to learn how to breath again. I'm sure that I knew how to do it properly at some time, likely before my life was overcome by stress and anxiety. I am learning to breathe without Gessner holding my hand and without a safety net. I am learning to breathe on my own.

It's a scary place to be, but I find that I have no choice. In the midst of a particularly rough night a friend reminded me that I don't really have any other choice but to put one foot in front of the other, day after day. And it's true. I don't have a lot of options, so for now I will breathe in and breathe out. Breathe in, breathe out. Go through one day at a time, making it through what I can and leaving the rest.

I'm reading Full Catastrophe Living by Jon Kabat-Zinn and will be working with a specialist to integrate the concepts into my life. This book describes the Mindfulness-Based Stressed Reduction Program that started at the University of Massachusetts Medical Center and is now used all over the country to help patients use meditation for healing. My cancer center has an 8-week mindfulness program that I may take in the future, but can't fit it in my crazy cancer treatment schedule right now.

I meet with one of the teachers of the class yesterday for a one-on-one session and we talked about mindfulness and how to be mindful and reduce stress. She hooked me up to a biofeedback machine and it was neat to physically see my muscles relax. I have a few more sessions scheduled with her to work on relaxation and stress relieve. I wish that I had done this earlier, but it's better late than never!

Chemo Number 5

I had chemo yesterday. It was my 5th over all treatment, my second of the new treatment. Treatment days are long and yesterday was especially long. My appointment with my oncologist was scheduled for 1:20 pm and I didn't get home until around 8:00 pm. It doesn't always take quite that long, but the days are always pretty taxing.

The good news is that my oncologist is really happy with the way my tumor looks and he thinks that it has shrunk with the new chemo. I had noticed some positive changes, but wasn't sure how excited to be. He said that he was VERY happy with the results. I'll have either 2 or 4 more treatment, depending on the response. Then I will have surgery and maybe more chemo and/or radiation (again depending on what happens with the rest of this chemo and the results of surgery) and then reconstructive surgery. So, it is still going to be a long road, but I am moving along on the road.

Part of the reason that chemo days are so long is because there is just so much to do. First you get to the office, check in at the front desk and then get a lab slip. Then you go to the lab. For some reason the lab always seems to be backed up and it takes a long time there. The nurse accesses my port and then draws my blood.

After the blood draw I take the slip back to the front desk and wait for the nurse to call me back. The wait depends on the day, and yesterday wasn't too bad. The nurse takes my vitals and then checks on my meds and how the week went, etc. Next up, the oncologist. He comes in, checks on how everything went since my last treatment and then does a quick physical exam. Note to self from yesterday: this part is much easier if you don't wear a dress.

The oncologist checks blood results to make sure that I am healthy enough for chemo and then sends me to the infusion floor. The wait on the infusion floor always seems to take forever. Yesterday it was almost 2 hours--they were really behind for some reason.

When a chair is finally ready, they call you back and get your meds ready. First they give you a bunch of pre-meds, including anti-nausea medication and steroids. Those seem to take about an hour. The prize for this is a sack lunch :) Then they start the actual meds. One of my new meds has to be manually pushed and it is bright red. I try to just ignore it--though I feel badly about having the nurse sit right next to me and me complete ignore her. Yesterday I gave a quick explanation that "vegging" allowed me to get through it. I felt guilty, so finally turned off my movie and chatted with her during the second vial.

After the "red devil" (that's what they used to call this medication because of its horrible side effects), the nurse hung my second drug and I went back to my iPad.

Everything seemed to be fine until right at the end of the infusion, when I started to itch and break out in hives. To treat this, they gave my more steroids (of a different type but I can't remember which). Fortunately after two doses of the supplemental steroids, the hives were mostly gone and I was able to go home.

I came home to some beautiful floors an a stuffed puppy from my dog sitter. It was a very nice surprise after a tough day!

New Job

My one and only job is to take care of myself and kick cancer's ass. I need to repeat this to myself multiple times a day and listen to my friends remind me about it too. You see, taking care of myself does not come naturally for me. In fact, it's a real struggle. My therapist asked me if I have always had trouble doing this and honestly I think that I have. Even as a child, I found myself looking out for my siblings and taking care of them. As an adult, I've gotten even worse. While I was married it was difficult to even think about taking care of myself because Gess's health required so much of my attention and energy. Even when things weren't that bad, I worried about when they would get bad again. I remember Gess trying to force me to relax by drawing me a bath, lighting some candles, and locking me in the bathroom! I know that my stress levels are unhealthy and that I need to address them, but for some reason it is so difficult for me to actually accomplish this.

Since Gessner died I haven't worked much--just a few cases and teaching a business law class. Since being diagnosed with cancer, I haven't done any official work. And it is driving me crazy! I am so used to doing, doing, doing, and the idea of resting makes me feel like a failure. I know that this is an issue that I am going to have to deal with--getting cancer does not make me a failure--but this is one of those times when my mind and my heart are not necessarily in agreement. So I have to trust the "experts" and my friends and focus on caring for myself right now. In that vein, I am writing a job description for my current job:

Lisa's Job Description:

• Get enough sleep. Take naps if necessary.
• Stay hydrated, drink lots of water.
• Ask for help when I need it. Accept help when it is offered.
• Say no.
• Go to my appointments, but be mindful of over scheduling and only schedule what is necessary or enjoyable.
• Laugh. Often.
• Spend time with friends.
• Cut out toxic people.
• Move every day, but be careful not to over do it.
• Remember to eat and eat for health.
• Cry when I need to cry.
• Get outside a little everyday.
• Snuggle with Beauty.
• Spend time each day meditating.
• Get massages.
• Craft whenever possible.
• Take my vitamins.
• Stay on top of my side effects--being "strong" doesn't mean suffering.
• Listen to my body.
• Do what feels right.
• Delegate, delegate, delegate.
• Revise job description as necessary.

This job may just be more challenging than any I've had in the past, but my health (and sanity) depend on me doing it well. So, here's to self-care!

Looking for hope

One of the biggest things that I have struggled with since Gessner's death is finding some sort to hope to cling to and to look to for the future. To be brutally honest, most days I wish that I could just be where he is. (And before you get all worried--I am not suicidal and I've talked to my therapists about this and it's normal, etc.). Being a widow and working through the grief is hard. People tell me that it will get better. That I need to have hope for the future. But I have a lot of trouble with that. My life experience is that once you get through one difficult patch, there is another difficult patch waiting for you. So I have been stubbornly resisting buying into this idea that there is something good for me waiting at the other end of this journey. My grief counselor finally got me to agree to have a hope of a hope of a hope that there might be something good for me at the end. Yeah, I'm a stubborn one.

Enter breast cancer. I want to scream, "See, I told you that this is what happens!" I'm not even through the grief journey--really I'm just starting--and something else happened. And this is something big. So once again I am faced with a mountain sized obstacle--one that I cannot ignore, even if I wanted to. I remember the first few days after I was diagnosed, all I could do was cry. And with those tears I begged Gessner to bring me him. Maybe this was the grand plan after all, and he was just readying my place for our next life together. Perhaps I would be one of those spouses who died shortly after their partners and people would say that I died from a broken heart. If I could have chosen in those early days, I would have chosen that in a heart beat.

But eventually my stubborness kicked and in and I decided that after all I had made it through, breast cancer wasn't going to be the end of me--or at least not without a fight. And so the battle began. Lisa versus Gertrude. To the death. We're still in battle and neither seems to be giving an inch right now. But I have surgeons on my side that will cut her out. So, my chances are good. But only time will tell.

Even with this renewed "fight," I struggle to be hopeful and can't picture a good outcome. There are times when I have a generalized sense that things will be alright, but I can't visualize anything specific. I can't dream about future possibilities or play out different scenarios in my mind. This is a coping technique I've often used in the past to help me get through difficult times. When Gess was really sick, for example, I would visualize a trip that we would take when he felt better or during the middle of exams in law school, I would think about the life we might have once I graduated and was a practicing attorney. Those dreams are what made it possible to sludge through the mud and make it through each new challenge.

But now, when I need as much help as I can get, I can't dream of a good future. I have been frustrated by this inability and it didn't really make any sense to me. And then it hit me like a two-by-four across the forehead. I can't dream about a future because any future that I have does not involve Gessner. When that realization hit me, it felt like an "a-ha" moment and a "duh" moment at the same time. So simple, yet so profound.

The reason that I can't dream about my future is because my everything is wrapped up in Gessner and he is gone. And if I dream about a future that does not include him, I am accepting that he is really gone. I know that he wants me to be happy and to have an amazing future, I have no doubts about that whatsoever. But at the same time, the thought of being happy without him seems not only impossible, but also unnatural. I had my chance at happiness and now he is gone.

So, I know what my hang up is, but still have no idea on how to get past it. I asked my brother to think about his life and what he wanted it to look like and then identify what was standing in the way of him getting there. My therapist turned the question back on me and I can't answer it. I can't think of what I want my life to look like right now and one of the things that is standing in the way of me visualizing this is because I can't imagine my life without Gessner. So, maybe that's a start. I don't know. I don't know how to get to a point where I can visualize something concrete to fight for. It would certainly help me on those days when I just want to bow out of this fight. But as a friend told me recently, there is no graceful way to just give up and died. Breast cancer isn't like that. So for now, my only chance is to fight. Some days the fight comes easily, others I fight because I have no other option. Hope or no hope, I must get out of bed every day, breath in and out, and put one foot in front of the other.

I still can't believe that Gessner is gone. I just reached for my phone to call him. Everyday there are things that I want to tell him and questions that I want to ask him. I wonder how long that is going to last. When is it actually going to set in that he is gone and that he is not coming back? Part of me never wants it to set in because that will mean that it really is real. But another part of me wants it to stop because every time it happens it hurts. I just miss him so much and need him right now.

Chemotherapy

For most patients with breast cancer, the first step of treatment is surgery to remove the tumor. Then, depending on the specifics of the situation, adjuvant therapy is considered, including chemotherapy, radiation, and hormone therapy. In some cases, neo-adjuvant (meaning before surgery) chemotherapy is seen as a good option. My case is one of those. The biggest driving factor for neo-adjuvant chemo in my case was the size and location of the tumor. My tumor is rather large (around 6 cm now--think the size of a lemon) and is abutting my chest wall. My tumor is also considered triple negative, which means that it is not receptive to hormone therapy. So, by doing chemo first, the doctors hope to shrink the tumor which will make surgery easier (and may also give me the option of having breast conserving surgery if I want it) and will also tell the doctors which chemotherapy agents work for me.

My first dose of chemotherapy was on May 23, 2011. I wore my "chemo" shirt to keep myself in the right mindset (It says "Hey Cancer, You picked the wrong bitch"). The day started with a blood draw and then an appointment with the oncologist to make sure that everything was okay for the treatment. This actually took a lot of time and involved a lot of waiting around. Most of the hold up was because of a study that I was participating in.

Finally I went up to the infusion floor and waited some more. Eventually, a nurse called my name and took me back to the infusion suite. There are various private rooms as well as rows of chairs facing the window. You can request a particular type of location if you want, but because this was my first time, they put me in a private room and had a nurse with me for most of the treatment.

Before you get the actual chemotherapy, they treat you with a lot of pre-medications to help control the side effects, manage anxiety, and minimize allergic reactions. The pre-meds include steroids, benadryl, and anti-nausea medications. They offered me ativan for anxiety, but I was feeling okay, so declined. The pre-medications took about an hour and were fine. The benadryl made me sleepy, but I stayed awake, in part because my friend Eleanor was there and in part because I wanted to see what was happening.

After the pre-meds, they gave me the actual chemotherapy agents. For me, it was a drug called Taxol. The taxol infusion took about an hour. I ate a turkey sandwich and messed around on my iPad during the time.

Once the infusion was complete, the nurse checked my vital signs and deaccessed my port. And then I was free to go. The nurse was so sweet--she gave both me and Eleanor hugs and wished me luck.

My friend Russ came and picked me up and took me home. I felt decent, just really tired from the drugs. So I went home and took a nap. I survived the first treatment with flying colors.

Chemo treatments number 2 and 3 where pretty much the same and uneventful. I went to these appointments alone, as I prefer not to worry about how my friends are handling seeing me hooked up to the machines. I watch movies, listen to music, knit, read, or nap.

The original treatment plan was for me to do 12 rounds of Taxol. I had an MRI after my 3rd dose and the imaging showed that my tumor had actually grown during the weeks I was on Taxol. So, my oncologist suggested a change in treatment plan. This meant that I was not able to participate in the research study anymore, but the doctor thought that the change was necessary. On to plan B.

Going Bald

I've known for awhile that my hair would fall out from the chemotherapy. It's pretty much a given with the regimen that I am on. And honestly, it was one of the biggest fears I had. I am not sure why I have such an emotional attachment to my hair, except that it was pretty awesome hair. And honestly, I think that it was my biggest distinguishing feature. Ask 100 people to say something about my physical features in one phrase and I'd bet the majority would be able my hair. It was beautiful. Long, naturally curly, and blonde (naturally when I was a kid and with a little help as I've gotten older). It's been called "golden." I've had random strangers ask to touch my hair. So the prospect of losing it was pretty frightening. Plus, it is a very outward sign of cancer. In most ways I don't look sick, but a girl with no hair--that alerts the general public to problems under the hood.

Once I found out that I was going to lose my hair I want to my favorite hair dresser and got a transition cute. He cut it short, especially in the back. And it looked really cute! So, I enjoyed the cute do for a few weeks.

Then I started to get little clumps of hair out when I washed it. My hair was thinning. I knew that it was only a matter of time before the clumps got bigger and honestly I couldn't deal with that. So, I went to my friend's house and she shaved me! She had a little fun with some punk-inspired styles during the shaving :)

I think that I may have jumped the gun a bit and with how thick my hair was I may have been able to keep some hair for a long time. But I think that this was a bit more about control and having some control over what is happening to me. I choose when to cut my hair, the cancer didn't choose it for me.

Surprisingly I don't hate my bald head. In fact, I walked around in public today quite a bit without any type of covering. I did wear a wig for a little bit, but I actually feel more self-conscious in that. This is going to be a transition and I am sure that my ideas about it will change. I have a couple of wigs (including an awesome pink one). So for now, no one should know

what to expect when they see me!

Just a picture of Gess

Playing tug with Beauty :)

It all started with a lump

I've been asked many times how my cancer was detected, usually coupled with an assumption that it was during a mammogram. But I'm 7 years away from having my first routine mammogram. It all started with feeling a lump. I don't remember exactly what I was doing, but I bumped my breast and it was painful, so I felt the area and noticed a pretty sizable lump in the upper quadrant of the right breast. Because of its location, size, and the pain, I knew that it was something new and it caused some concern. So, the next day I called my women's health provider and explained what I felt. I also told her that I was leaving for vacation the next day. She said that it wasn't an emergency and that generally cancer didn't appear suddenly and wasn't usually painful. She did want to see me so we scheduled an appointment for when I came back from vacation. I went off to Colorado and Florida, trying not to worry about the lump, but concerned that it was painful. I did not think that it was cancer--I thought that it was probably a cyst and I just hoped that I didn't have to have surgery to deal with it.

The day before I came back from vacation I called too see if there were any cancellations and got earlier appointment, for the day after I got back. So, on March 31st, I went and had an exam. The NP saw that there was a sizable lump (duh!) and also felt one in the left breast. She sent me to Swedish Comprehensive Breast Center for an ultrasound. She told me that it was likely not cancer and was probably a cyst.

When I got to my appointment at the breast center the following week I had to have a mammogram (ouch!) and then an ultrasound. They didn't see anything on the left breast, but confirmed a large mass on the right. The radiologist said that it was likely a cyst--a fluid-filled sac--and that they would see me again to drain the fluid and take a biopsy. The aspiration and biopsy was scheduled for April 12th, less than two weeks after my initial appointment. When the radiologist inserted the needle to aspirate what we believed was a cyst, she was unable to get any fluid. It was a solid mass. She took a couple of samples, told me that it was likely a fibroadenoma (a non-cancerous tumor) and that the pathology report would take two days. That was the first time that I even entertained the possibility that it could be cancer, but it really seemed like a remote possibility. I have no family history of breast cancer and I'm only 33. Plus, my husband just died for goodness sake! I can't have cancer too.

The next day was April 13th--it would have been Gessner's 34th birthday. I dreaded the day because I should have been celebrating my husband's like, not facing the reality that he was dead. I didn't know what to do for the day and finally decided on keeping myself distracted. I had acupuncture and then coffee with a good friend. I decided to go to grief art therapy that night and had a few hours before that started, so went to University Village for a little retail therapy. I parked my car and got close to the shops when my cell phone rang. It was a local number, but not one that I recognized. I picked it up and it was Dr. Browning for Swedish Breast Center. She had my pathology report. She was sorry to tell me that it is cancer. Is at on a bench, completely floored. I grabbed a notebook out of my purse and started writing information down. Invasive Ductual Carcinoma. Most common form of breast cancer. Appointment with a surgeon. Telephone numbers. Names. I said goodbye and she expressed her sympathy again.

I started to make phone calls, relaying the news, still in disbelief. I got another call from a nurse, saying that they found me an earlier appointment with a surgeon. And then the whirlwind started.

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.