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).

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.

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.

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!

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.