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.