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.

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.