Dara’s Experience During Diagnosis and Surgery for Breast Cancer

12145725274_01512028c1_zThis is us after Dara’s second surgery. Outings had to be pretty short because she was so tired, I remember we had thought we might go to a second party after this wedding dinner but we couldn’t do it.

As a follow-up to my post about Dara’s experience with chemo I thought it might also be helpful, and provide some background for other posts around my care taking lessons learned, to talk about the process of her diagnosis and the surgery prior to chemo for her breast cancer. This is also another information dump sort of post—it’ll be interesting for someone who might be going through this process or having someone they know going through it to read a detailed experience.

Dara had a dream last summer where she was told by a friend who had passed away to get really good health insurance. She shopped for a policy and upgraded from her existing emergency room only policy. (This was before Obamacare came into effect last Fall.)

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Because of this new insurance, when she was in NYC for a conference in October, she made an appointment at her GYN for a check-up. It had been 2-3 years since her last check-up. She loves her GYN and when her doctor found a lump on her breast she was really surprised. Dara wasn’t in the habit of doing breast self-exams, other than once every few years after seeing a really dramatic commercial.

Within a couple of days of finding the lump, Dara went in for a mammogram of her left breast and biopsy at Brooklyn Hospital, the hospital associated with her GYN. She and I weren’t dating at the time so she went with a friend because she was scared. (We were in the process of becoming “Benefits without Friends” as I put it and she didn’t want to ruin our vibe by telling me what was going on until she got the diagnosis.)

While waiting for the results of her biopsy, she felt pretty sure she would be diagnosed breast cancer, given the dream she had last summer. Her intuition was setting off five alarm bells.

She made an appointment at Memorial Sloan Kettering with a breast surgeon about a month after the biopsy. She knew she wanted to be treated at MSK because her dad had received such world class treatment with his stomach cancer and the compassionate care that their staff, doctors and nurses offered was second to none. The appointment wasn’t for another month so she headed back to LA, where she had left her car on her six month cross-country-sell-all-her-stuff-and-wander-around-the-country-staying-with-friends trip.

She had an initial consultation with the surgeon in November after she drove back. Her mom, her ex from before me and one of the girls she was seeing this summer went with her. That appointment was an hour and a half. She had to go to another mammogram (this time she went by herself) at the direction of the surgeon.

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At this point, she still didn’t know what stage she was at (they wouldn’t know until after her surgery) and she needed to be tested for the BRCA gene to find out how likely a recurrence of breast cancer was. She went alone for the BRCA gene test and there was a lot of information given and she thought it would have been nice to have a second person there for it. Knowing her family history was important for this appointment and Dara wished she’d tapped her mom for more information (or had her along for the appointment). The results from this test took forever—like three weeks.

Her surgery took awhile to schedule. First she had to decide whether to get a lumpectomy (recommended by her surgeon) or a double mastectomy. According to her breast cancer surgeon and oncologist, they consider a lumpectomy and radiation to be as effective at preventing a reoccurrence of the cancer as a mastectomy. Dara’s decision was heavily influenced by whether or not she had the BRCA gene and the fact that she has an ambivalent relationship with having boobs. She talked about that (and her low hanging boobs) in her vlog.

Ultimately, she relied again on her intuition. She felt the inclination to just get a lumpectomy, even though she had lots of intellectual reasons to get her boobs chopped off.

Once she scheduled the surgery her insurance became a whole (thankfully brief) nightmare about not covering the medical procedures. Dara had to prove that breast cancer was not a pre-existing condition. Though her diagnosis was after she had changed to the new insurance, they needed proof.

We were more or less back together at that point and I spent a lot of time supporting her through the bureaucracy and my home office became a great asset for signing documents, scanning forms and overnighting. I can imagine if one didn’t have access to that technology the schlep to a copy place to take care of it would be icing on a gross cake. The whole insurance thing was stressful and stress is something she is trying to avoid. She believes stress is what caused her cancer.

The surgery had to be pushed back a couple of days because of the insurance pre-approval, but luckily Dara was able to get it done before the holidays.

She finally got the BRCA results back a week before surgery and they were negative so she felt like she had made a sound choice based on her intuition.

11408806393_91828085b0_zI genuinely love the waiting room beverage situation at MSK.

It was weird during the lump time. I could totally feel it on her boob. I started going to the doctors appointments with her at this point. She had a meeting with her surgeon at the main campus, with lots of questions. She went into that one alone and I realized after the appointment when I had to drag the information out of her that it would be way easier if I went in and met with the doctors with her. (This was before we identified me as her primary caregiver because we were still feeling out whether and how much to get involved with each other again.) She’s a very “in the moment” kind of person and I like to feel like I have a full understanding of everything so it became easier if I could go meet the doctors and release my litany of questions directly.

Right after she saw the surgeon we went to a different building at Memorial Sloan Kettering about ten blocks away for pre-surgery testing. There was a blood draw, she saw a member of the anesthesia team and an xray tech. We had a lot of fun at that doctor’s appointment. I took silly photos encouraging her to ham it up, playing with the tools in the exam rooms when left alone.

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I think that was the moment I realized consciously how different our relationship was from the first time we dated. I was still in love with her, that hadn’t gone away, which is why I had wanted to be part of her support team. This time around things seemed really different, though. Everything was more joyful, playful and our chemistry had opened up to this new place where even going to something as potentially scary and difficult as a hospital was fun for us. I knew we were starting something bigger than we had before.

Her parents flew in from Vegas for her actual surgery, an out patient procedure that was at yet another MSK building. She had to fast the night before and bathe using Hibiclens (a super sanitizing wash you can buy at the drug store) the night before and the morning of surgey. (By the way, my cat ALF had an emergency the morning before surgery and had to be put to sleep, for a little while it was like trading crises between the two of us.)

14059352638_4502b9dfaf_zALF’s last nap with Dara and Macy on my bed.

It’s kind of weird meeting someone’s parents for the first time anyway, and especially right before surgery. They are lovely people, but it’s kind of a stressful situation. I was not prepared for how scary waiting for her was going to be, even though the actual procedure was pretty short. It’s not easy having a loved one go under the knife. I remember telling Dara’s mom, “I don’t know how you did this six times with Dara’s dad,” because that’s how many surgeries his stomach cancer required.

They gave us a clear timeline expectation going into the procedure. She got wheeled out of the prep room, after about an hour the surgeon called us in (as they had said she would) to report back that everything went great, then we had to wait another 90 minutes or so for Dara to start waking up from the anasthesia. We could only go back to her recovery room two at a time so we traded off. The resident spent a lot of time with us fixing Dara’s steri strips. Then we went out for sushi since Dara was really hungry, and she went back to her parents’ hotel.

While we were in the prep room Dara was told by one of the nurses she would have to remove her bracelet. It is a string bracelet, similar to a friendship bracelet, that she had woven in everything she loved into it. It should have fallen off already by her surgery and it meant something special to her spiritually that it hung on. She asked the nurse if she could keep it, if they could possibly use her other arm. She also asked the nurse to say positive things to her while she was under the anasthesia.

When she awoke in the recovery room she saw that the bracelet was no longer on her left arm. She was sad until she noticed it was now on her right arm. While she was under someone (we think the nurse) had moved it and sewn it on her other arm, where it is still intact four months later. It was such a sweet thing that the nurse went out of her way to do. We’re certain she also was saying nice things to Dara during the procedure as we’d asked.

Dara came to stay with me the next day. It was hard for her to move around mostly because she was really sore, tired and had to ice her wounds a lot. She was also really grumpy from the meds. She had a difficult time sleeping. Mostly she just needed to stay in one place and sleep a lot and have food and ice packs replaced.

The surgeon also took out a couple of lymph nodes (sentinal nodes) to test to see if the cancer had metastisized. The wounds in her armpit from that were a lot more sore than the boob wound.

Her surgeon told her to start wearing sports bras only during the recovery process.

I was really impressed with the incision. It’s like this perfect semi-circle around her areola. I told the surgeon during her follow-up appointment that it was an impeccable job and I saw the normally pretty stoic business-y woman crack a smile. I mean, as a lesbian I feel like I am somewhat of an expert about what great boobs look like and Dr. Morrow did an incredible job maintaining the aesthetic.

It took her about two to three weeks to feel close to “normal” after surgery. Sadly, we were told she had to go back under the knife once the labs came back (a little over two weeks after surgery, they were delayed due to Christmas and New Year’s) because they found pre-cancerous cells in the margins of the lump, meaning they didn’t get everything they wanted. It sucked. Dara was really bummed that we had to start at square one, she was hoping to have some time feeling “normal” again especially because I’d been doing so much care taking for her.

During this time her lump was off in California at a fancy lab getting tested for what kind of receptors it has and all the yadda yaddas that tell the doctors whether it will be receptive to chemotherapy. I’m not sure if her lump got a chance to go visit the Redwood forest but I really hope so.

The second surgery was the same as the first time, only I was alone and it was later in the afternoon so her fast was much harder. I goaded her into filming this hilarious video of eating things in the waiting room.

Leo came by to visit for about a half hour, which was really nice, and I wish I had brought a buddy to hang with the whole time.

During the follow-up for the second surgery we got the results from the California Lump Resort and she needed chemotherapy. Basically, her lump was just at the point where she could maybe have not had chemo because the cancer had not matestizied. But because of her age and the type of cancer she had an 18% chance of reoccurence. Dr. Morrow explained to us that chemo was a good choice because she would knock that chance down to the single digits.

We were a little dubious, and went in to see Dr. Lake, her oncologist. During our initial appointment with her she explained everything really clearly by writing notes out for us—it included drawings and symbols. Kind of like being at class and looking at a professor making clear notes on an overhead projector (do teachers still use those?) but we got to take them home. Dr. Lake’s characterization of the type of care was what sent Dara over the edge to pro-chemo. “At this point we’re calling this curative care. If you get cancer again, it will be considered paleative.” Meaning, they could cure it this time around. If we waited, they wouldn’t be able to.

So we went for it. You can read all about her experience with chemo in this blog post.

Next up after chemo is radiation, with Dr. McCormick, another woman breast cancer specialist. It’s going to be a five days a week for five weeks, one hour per day, plus one day with another couple hours to see the doctor.

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