Take two

It has been an agonizing ten weeks since we first suspected something was wrong. It was hard to believe that we needed to pull out our battle gear yet again, gather our troops, and head off into the terrifying unknown. We were just beginning to breathe again, looking forward to life outside of the doctor’s office. Scott was cancer-free, two years.

The doctors originally reassured me that it was nothing – a fluid-filled milk duct. I was too young for cancer. I was being a bit over cautious given Scott’s ordeal. Luckily my body put up a red flag when it had had enough of my reassuring doctors and I immediately heeded its warning. That was ten weeks ago. Feels like a lifetime. Please, please listen to your bodies. They are amazing creations and they are so very wise.

My reaction to terror is to figure out the worst case scenario and then learn how to deal with it. In this case, my worst case scenario was that my cancer had metastasized to my organs and would be considered terminal. I didn’t want to die. I wasn’t ready to die. I tried to understand this possibility yet at the same time realize that it was remote. I found solace in the advances medicine has made regarding breast cancer. They are amazing and new treatments literally come to market all of the time. In many cases, breast cancer that has metastasized can now be considered a chronic illness, not a death sentence. I can do this.

I decided that my motto would be “I will do whatever I need to do.” That was all. That is what I tried to do. After each test, after each bit of news, after each doctor’s visit I would say to myself, “You will just do whatever you need to do.” Okay. I can do that.

On I went. It felt as if I was climbing a really big mountain with really mean monsters lurking everywhere. I took one step at a time. I counted, “1, 2, 3, 4…1, 2, 3, 4…1, 2, 3, 4.” I never looked up. I only realized that I was getting closer and there I was, still going. “Just breathe,” my mom kept telling me. So I did. I was doing it and behind me there you all were, cheering me on, pushing me ahead, and giving me love and encouragement and literally nourishment along the way. I felt the warmth of your kindness and the strength of your friendship every minute of every day. You were the light along my dark way.

I don’t know how to adequately thank you all. There is no way. I am eternally grateful. What I want you to know is how much each and every gesture helped me. I know how hard it is to know what to say or what to do, especially when you are dealing with an introvert. How much is too much? How do I show I care but not overwhelm? How do I respect her privacy but let her know I am here? Well you did it! We relied on you and there you were. I am filled with an overwhelming sense of gratitude and now it is I that am unsure of how to let you know just how much you mean to me. I am unbelievably lucky to have had you by my side, along the way, up my personal mountain.

I haven’t reached the top yet but I do see the light. I am still not sure what else lies in my path but my motto holds true. I will do whatever it is I have to do. That’s that. There is one last favor I ask of each of you. Take a moment today or tomorrow to hug those you love a little tighter, to tell those you love how much you do so, and take a deep, healing breath in, letting your body know just how much you honor and cherish it.

Your ever grateful friend, cousin, niece, sister, wife, daughter,

Julie

While we were waiting to see the doctor today I was thinking about the expression “when life gives you lemons, make lemonade.” You know what? It is a stupid analogy. Stupid, stupid, stupid. Think about it, that is like saying “when life gives you fresh fruit, make fruit salad.” Lemons would be great! I love fresh lemons. You can put them in club soda and it makes for a refreshing drink. Shave some peel on a orange tart, you got yourself a lovely dessert. A few slices with poached salmon — yum! So the expression is officially dead to me. Not on notice, but dead to me. I would like to submit a replacement:

“When life gives you three month old milk, close your eyes, plug your nose, and chug it down quick. It is going to taste like shit but the quicker you get it down, the sooner it will be over. Now quit your complaining.”

It’s a bit longer, but I think it has a nice ring.

In what is becoming a trend for Jul and I, we waited for an hour for the doctor to come talk to us. Get this, the pathology report isn’t done. That’s right. Not done. All this build up, distraction, tension, and the #$@#$ path report isn’t done. For the love of…

So here is the word:

• The lymph nodes appear to be clear “unless pathology surprises [him].” Not sure if pathology is into surprises, or how often one is “surprised” by the results. I’ll chalk this up as good news.
• He confirmed we got good margins in all but one area against Jul’s chest wall. We will go back and deal with a bit later.
• Pathology “expects to find” micro-invasion. I don’t know if this is like saying “Geraldo Rivera expected to find interesting things in Al Capone’s Vault” or “I expect to find I will be sick after drinking this bottle of tequila.” He doesn’t think that micro-invasion would require chemo but that is a conversation with the oncologist.
• He expects Jul should use tamoxifin to reduce the chances of recurrence in the other breast.
• We don’t know when the pathology report will be done “but if we don’t hear from him in a week, we should give him a ring.”

It was an odd time for him to tell us a story about a women in her mid-thirties with extensive DCIS who recently passed away. She refused to have a mastectomy or any form of treatment and so the cancer spread everywhere. This was the point where the appointment crossed from unfulfilling to surreal and a bit like an episode of “Three’s Company.”

So there you have it. Things look good. At some point we will hear more. We should talk to an oncologist.

Now, where was that bottle of tequila?

Here we sit waiting

No doctor to see us yet

1 hour gone so far

Dr. Dirbas is going out of town tomorrow so he called to give us details on what they are seeing so far. Pathology to date is showing no signs of spreading — they still have only found DCIS. Details are:

• He found another lymph node in the tissue they removed. So Jul has two sentinel nodes. Preliminary pathology on the second node was also negative.
• The area of concern is 6 cm.
• Initial pathology on the breast tissue shows only DCIS — no invasive cancer found.
• The next step is to look for micro-spreading
• He liked the margins he was able to get in all but one area. When they replace Jul’s expander with a permanent implant, he will probably take more tissue just to be safe.
• Final pathology of everything will be given to us Tuesday, 2/28.

This was the best possible news we could hear at this point.

Jul also had one of the two drains removed today. Given the discomfort that comes from having surgical tubing coming out of holes in your chest, this was great progress.

Good day, all around. Too tired to be witty — feel like a train hit me.

Jul is doing well and is resting comfortably uncomfortably. She is fairly mobile until about 1pm when it “starts to feel like somebody hit [her] in the chest with a baseball bat 15 times.” I think the worst part are the drains — it is impossible to be comfortable with surgical tubing coming out of your chest. When my cousin Julie was diagnosed with cancer we got her camisoles with sleeves to hold the drains post mastectomy. She overnighted them to us the day of Jul’s surgery, and it turns out they make a huge difference. They provide much improved mobility over safety pinning the drains to your clothing. 

Thanks again for all of your support.

Jiggity Jig.

Rough night for Jul. Bad nausea, but with nothing in her stomach. Through a combination of drugs we managed to beat it back by the morning. The drains coming out of her chest are pretty uncomfortable and they make moving around challenging. The quote of the night goes to Jul — “Holy major surgery” she said as we tried to get her up and moving. Discomfort aside, we are in good spirits and excited by the preliminary pathology results.

We changed the dressings on the incision this morning and it looks much better than both of us expected. The reconstructive surgeon came by on his rounds. When I told him I was expecting a large open open wound, he looked at me like I had insulted his family. “What do you think I am here for?” He said, after a long pause.

Jul felt good enough to come home about 9:30 and both of us caught up on sleep this afternoon. The thing you forget about the hospital is how little rest you get. Nurses come into the room to check on something, change something, or inject something every 45 minutes. I was reading a sci-fi book while Jul slept so my memory of the hospital is this hazy mix of time travel, aliens, oatmeal raisin cookies, morphine drips, night nurses, and the regular heartbeat of the machine that was applying pressure to Jul’s legs to deter blood clots. Surreal to say the least.

No new news from the doctors in the morning. Thank you everybody for your support. I was relaying your comments back to Jul while we were in the hospital. I just ate an entire jar of Jelly Bellys from a basket that Ken and family sent us. It is nice to feel nauseous from something other than Mrs. Field’s cookies.

On my last post Melodie asked what conclusions we can draw from the preliminary pathology results. The results is one more piece of data suggesting the cancer has not spread to the lymph nodes. So it decreases the chance that Jul has Stage II (nodal involvement) or Stage III (much nodal involvement). It doesn’t tell us anything about whether the cancer has invaded the breast tissue (Stage I).

Imagine you have a box full of 500 marbles with opaque sides and a small opening big enough for your hand. You want to know if any of the marbles are red. The fine needle aspiration of her lymph pulled out 50 marbles, all of which were green. In the operating room they only have time to take one slice down the center of the node. This pulls out another 200 marbles out of the box. We won’t know for sure all of the marbles are green until the pathologists examine all of them. Same analogy works for the breast.

Mark (not surprisingly) expressed curiosity in contents of the CD that Blue Shield sent us. I uploaded a rip of the three tracks so you can listen. Jul actually found it worked well post surgery while she was fighting off nausea.

Now we rest and wait.

Jul got out of surgery about 9pm. A couple hours later we had her tucked in and doing OK. She is in good spirits but with lots of nausea. She still looked beautiful even after eight hours of surgery. When we make it through this mess, remind me to marry that girl.

The hospital is oddly quiet. I managed to find an empty nurse’s station with internet access. If I find any of your medical records I’ll be sure to post them online. The only thing open at this hour at the hospital is a Mrs. Field’s Cookies (!?). I just ate 18 cookies so they might have to give both Jul and I anti-nausea medicine. I considered streaking the oncology ward but they have been nice to me and are letting me stay in a chair at the foot of Jul’s bed.

I’ll save the streaking for after we get back the final pathology report. 

Jul is about halfway through her surgery. Dr. Dirbas just came out and told me the preliminary pathology on her sentinel lymph node was negative. This means he doesn’t need to take out the axillary nodes. He said Jul has one sentinel node (the one that lit up immediately after dye injection), although they did spend 30 minutes making sure.

This the positive news we were hoping to hear — I only wish I could tell Jul. Everything now hinges on the final pathology, which will be completed in seven to ten days.  Our ever-cautious doctor is still concerned, but I can’t say I’m surprised. I don’t want to tempt fate so I’ll say I am “encouraged by the results and look forward to more information from the final pathology.”

They were expecting to take skin from Jul’s back for reconstruction. Dr. Dirbas now thinks they may not need to do this. It is up to Dr. Kahn, the reconstructive surgeon, but at this point it looks like they might be able to use what is left.

I had to knock off another resident to get internet access. Again, good cause, right?

We got here about 6:45 this morning and started with the radioactive injection. They injected radioactive dye into her breast so they could trace the path of the isotope to the sentinel lymph nodes, and remove them during surgery. About 15 minutes after the injection, we were able to see one lymph that was clearly sentinel. Then we headed over to the MRI where they inserted a wire into Jul’s left breast. The surgeon will use this wire as a guide during surgery to perform the left breast biopsy. Then we headed back to nuclear medicine to get another few videos done. By this point there were about three lymph nodes that were showing as potential sentinel lymph nodes. Then, surprise! The radiologist wanted Jul to get another mammogram. They wanted to make sure the wire was in the right place.

At this point it was 11:15 and surgery was scheduled for 11:30. Nobody seemed to have any issues with the time so we trudged over to the cancer center and waited to have another mammogram. I was a bit agitated at this point. Nobody seemed to know what was going on (when I went to remind them we had surgery scheduled, the women at the desk said “Well, we are still looking for the patient. We can’t find her.” SHE IS MY WIFE AND SHE IS SITTING RIGHT THERE.) Long story longer, they finally got her in. While she was getting the mammogram I found the head of volunteering who helped us keep things moving. We did manage to score her a special red blanket — they give these blankets to huge donors when they come to the hospital. It means “pay attention to this person, they might be paying your salary.” When we finally got back to surgery, somebody had hemorrhaged and so things were backed up. Sigh…

We got her rolled her into the operating room about 2pm. Dr. Dirbas estimated she would be done about 9pm and in recovery. We would probably get her to her room about 10pm. I should have an update on initial lymph node results in about five hours.

All for now. Lew and Mart are home watching the puppy. I have six laptop batteries and and what appears to be an infinite supply of Starbucks coffee.

With us one day out from the surgery I am going to put a moratorium on people stopping by the house. I need Jul to rest and relax in the day remaining before the surgery, and I want her to focus on healing after the surgery. Despite all appearances, Jul is an introvert. When you are introverted it takes energy to deal with social situations. I need her to focus all her energy on the road ahead.

I have no idea how these next few weeks are going to go or what recovery is going to look like. Much of our mental state will be driven by early results from the surgery and then by detailed pathology seven to ten days later. Feel free to ping me and I can give you a sense for whether we are up for visitors.

I realize a crisis like this brings out a complex mix of feelings and a strong desire to help. I wanted to share some of my thoughts on dealing with this. 

The hardest thing to accept is that you can’t make it OK. The situation sucks and that is all there is to it. There is this giant elephant in the room and it doesn’t matter what color you paint it, or how much paper mache you put on it. There is still a big $!@#$ elephant in the room. As a good man from my past used to say, “you can put lipstick on a pig, but you can’t make it sing.” At least for me, accepting this fact was a big step. Once you take the impossible task of “fixing” it off your shoulders, you can focus on small improvements in comfort.

In trying to make sense of my own experience with cancer, I had to step back and identify the source of my emotions. I found when supporting others in crisis I had to pull apart my desire to help with what it is that will actually help. When I let my need to help get in the way, I ended up acting in a way that made me feel better but didn’t take into account what would help those in crisis. Each person is different and will be distracted by different things.

So how is Jul different? As I mentioned, she is an introvert, so long visits sap her energy. She loves crosswords, good food, and documentaries on PBS. Chocolate makes her smile. Flowers make her glow. She loves her pug. She enjoys gardening and plants. She is, well, the Jul you all know.

Thank you all for your support. I hope to be back with good news.