Chapter 6 – The Fear – I Don’t Recommend It

In the days after I finished radiation therapy in 2002, I often found myself crying for no apparent reason. Or for little, meaningless reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for the holidays that year, and being very emotional the whole time we were there.  This emotional volatility would come and go for a while.

Fortunately, the blisters from radiation eventually crusted over, became less painful, and started to heal.  I also became less raw emotionally, although I continued to struggle with fear of recurrence.  The radiation burn on my breast eventually faded, but I continued to have pain in my breast at the tumor site. Pain that my radiation oncologist simply said that I shouldn’t be having. When sufficient time had passed, my breast surgeon prescribed my first post-treatment mammogram. 

This mammogram did two things: it confirmed the cancer was gone, and it showed that one of my lymph nodes near the tumor site was swollen. There was a small chance that it could be cancer cells, but it could also be an infection. My breast surgeon did an in-office needle aspiration – drawing the fluid out – of that lymph node to test it for infection, and in the meantime put me on a general antibiotic.  By the time the test results on that lymph node were back, and confirmed it was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone. However, in the days between the aspiration and getting the results, I struggled with the fear that the cancer was still there.

That experience, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis.  That is the life of someone who has been treated for breast cancer, or any cancer.  Anything that looks remotely related to your cancer, even if it was early-stage and successfully treated, means extra tests and holding your breath until you get the “all clear” yet again. Many survivors experience a similarly stressful reaction to regular follow-up exams, like annual mammograms. And no matter how many times the doctors tell you that you are fine, you may still react with some degree of fear. I think this is normal for anyone who has been through cancer or any potentially terminal illness that can come back after treatment.

I want to make a distinction here between that kind of fear, the fear that arises in response to having some kind of medical test done, or some kind of temporary health concern, and the kind of fear that I often struggled with during the five years following my first breast cancer.  And I want to make this distinction because I feel like I often lived my life in a state of fear: unnecessary, time-wasting, life-draining fear.  I call it unnecessary fear, because if you remember my initial diagnosis, it was Stage Zero, non-invasive, ductal carcinoma in situ.  Which is a particular cancer that can’t come back (or recur) because it had never escaped its original location in the duct. So, the chance of getting anything other than more DCIS elsewhere in my breasts was pretty small.  Now, at several points along the way in this diagnosis journey, MG and I were told that the odds were in my favor, that the chance of a negative outcome for a particular test were very low; and every time, we got the result that the odds said we would not get.  So, even though the chance of my DCIS coming back was low, I just couldn’t shake the belief that it would somehow come back.

It would not be an exaggeration to say that I lived a lot of the five years following my DCIS treatment in a state of fear about something that would probably not happen. And I regret that choice. Because I do believe it was a choice, a choice that I made on a regular basis. I listened to my fear and I let it control my life. I think I believed that if I was vigilant about the return of the cancer (if I let the fear run my life), then it wouldn’t surprise me when it came back. Somehow I would be ready, or something.

I hope that as you read that last paragraph it seemed irrational to you; because it was irrational. There is no way to prepare yourself for the return of your cancer.  Just as there is no way for your doctors to predict if your specific cancer will return, or when it will return, or in what part of your body.  Therefore, living five years of my life in a state of anticipatory fear of my cancer coming back was a waste of time and emotional energy, and I’m pretty sure that this daily choice may have had the cumulative effect of keeping my body in a state of constant stress, therefore leaving me more vulnerable to developing a new cancer.

It is precisely because I spent so much of those five years choosing to live in fear, that when I ended up being diagnosed with a new breast cancer at the end of those five years, I immediately felt responsible for bringing that new cancer on myself.  Now, do I believe that if I had not lived in fear I would never have developed the new cancer? No, I don’t believe that. I believe that my breasts grew cancerous tissue, which was fueled by estrogen, and that I would eventually have gotten cancer again.  Would I have gotten it so soon? I don’t know. But I do know that I would have had a richer, more enjoyable life during those five years if I had not chosen to live in fear.

The reason I write about this fear is that I am hoping to help you avoid making the same mistake.  There is no logic or sense to living life being afraid of illness or death.  It’s not that I don’t still have my moments, days, or even weeks where I struggle with my fear of recurrence and death; of course I am sometimes afraid.  But between those brief periods of being afraid, I choose to not be afraid.  And I am not just choosing to not be afraid of the cancer, which gives me more freedom to feel joyful and happy and at peace; I have chosen to let other fears go as well, fears that always held me back from doing things I wanted to do. 

For instance, I chose to give up my fear of riding in boats. This fear used to mean we couldn’t go on adventures like whale watches or ferry rides, which MG really enjoyed, as she loves boats and the water. Since treatment for my second breast cancer, I have been on whale watches off of the coast of Maine and Cape Cod, in the Bay of Fundy in Nova Scotia, and I have taken lake cruises and ferry rides, including an overnight cruise from Portland, Maine to Yarmouth, Nova Scotia. I no longer suffer from seasickness on boats. I also gave up my fear of heights, which allows me to be more adventurous.  MG has often said she misses my fear of heights, particularly when I am standing on the edge of a canyon or a cliff, which I would have been too afraid to approach in the past. Don’t misunderstand me; I have not become reckless. I don’t go skydiving or enjoy crazy carnival rides, although I do enjoy a good Ferris wheel ride. I am no longer afraid of walking across the Brooklyn Bridge, or of hiking up a mountainside in the Adirondacks. I also decided that I was tired of being afraid to ride horses, something I had always wanted to do, but which always made me fearful.  So I spent a couple of years taking riding lessens, and went horseback riding in Ireland, in Hawaii, and in the Adirondack Mountains. 

Do I wish that I could have lived those five years between cancers differently? That would be a waste of time, and I am done wasting my time. In AA, we talk about not regretting the past nor wishing to shut the door on it, and seeing how our experience can benefit others. I hope that reading about the lessons I have learned about my fears will help you spend less of your time living in your own fears.

What are Social Security spousal benefits, anyway?

 For anyone not aware of them, I want to share information about spousal benefits from Social Security.  

I was giving a talk recently about the difference in access to Social Security benefits between married and unmarried couples. The example I was using compared a married opposite sex couple to an unmarried same sex couple (see the chart below), explaining why the Federal recognition of marriage equality is important for the economic protection of older LGBTQ folks. But the principles apply to any unmarried couple. Although, because marriage equality is so tenuous, older same-sex couples continue to face the risk of being denied access to these benefits in the future. After my talk I spoke with an older heterosexual woman who was completely unaware of the spousal benefit. Which has me wondering how many of us don’t know about it. 

So here I am.

 

Social Security benefits are calculated based on earnings from the 40^th highest earning quarters of your work history. If you and your unmarried partner each retire at your full retirement ages (for example, my FRA is about 67), the partner with a history of lower earnings would receive a lower benefit. 

 

 

In this example, which was created in 2009, the higher earning partners qualified for a monthly benefit of $1,079, and the lower-earning partners qualified for an earned benefit of $264. For the unmarried couple, this meant a combined monthly benefit of $1,343 or annually $16,116. But in the legally married couple, the lower-earning spouse would instead receive $540, half of the higher-earning spouse’s benefit, increasing their combined monthly benefit to $1,619, or annually to $19,426. 

 

That spousal benefit does not, in any way, impact the higher earner’s benefits; doesn’t reduce their benefits. Similarly, if a couple was married 10 years or longer, and the lower-earning spouse did not remarry, they can still receive the spousal benefit based on their ex-spouse’s earnings record. Again, this does not impact the higher-earner’s benefits, nor prevent the person they are married to when they retire – if they did remarry – from receiving their spousal benefit if they were also a lower earner.

 

I hope that all makes sense. I will create another blog post about survivor’s benefits.

Chapter 5 - DCIS Treatment

Jump ahead to my second lumpectomy, which went off without a hitch. I asked for Xanex again, and the surgeon agreed, since it was such a small dose. After the surgery, my incision healed even cleaner than the first time. I had been afraid that the scarring would get worse, but it did not. Then we met with the oncologist, who talked with us about the type of cancer I had and my treatment options. Again, MG went with me to this appointment, and I introduced her to the doctor as my partner. The oncologist was very respectful of our relationship, and addressed MG as a concerned partner in dealing with my diagnosis. 

The oncologist said that my cancer tested positive for estrogen and progesterone, and that if I was older (I was only 35), she would recommend Tamoxifen, which is an estrogen blocker, and keeps estrogen produced by your ovaries from binding with any breast cancer cells in your body, so the cancer cells won’t become tumors. But because I was so young, and my cancer was not invasive, putting me on Tamoxifen would unnecessarily put me at risk for other health problems that are associated with premature menopause. Also, at the time, you could only take Tamoxifen for five years, and then you could not take it again. 

She advised us to reserve Tamoxifen for use later in life, should I ever get breast cancer again. Which, of course, we all hoped would not happen. But if we used Tamoxifen then, and I did get breast cancer again, I would not be able to use Tamoxifen in the future, so better to save it as a back-up plan. This made sense to me. She said that because the cancer was non-invasive, I would not need anything like chemotherapy, which was a great relief to me. She talked to us about what radiation therapy might be like, and her office set up an appointment with the radiation oncologist. 

I liked the radiation oncologist when we met her. She was also respectful of MG and of our relationship, as was her physician’s assistant, Steve. She was very detailed in her description of what radiation therapy would be like, and answered all of our questions and concerns. Basically, I would be getting radiation treatments once a day, five days a week, Monday through Friday, for six and a half weeks . The first five and a half weeks I would be getting radiation over my entire left breast, and the last five days, the radiation would be focused only on the tumor site. She dispelled my fears about developing any secondary cancers from the treatment – she said the risk was 1 in 3 million. We talked about how the technology involved and the location of the tumor made it possible to irradiate the breast without involving the chest wall, which would minimize any side effects like anemia or anorexia. There was a possibility of some fatigue, but every woman is different, so we wouldn’t know how the treatment affected me until I was going through it. 

We scheduled my first appointment, at which the technicians would identify the target zone for radiation and mark me up with a sharpie (they keep the sharpie marks fresh throughout radiation therapy – a necessary but unfortunate daily reminder of what you are going through). MG went with me to that first appointment, which took place the day after my 36th birthday. Happy birthday to me, right? 

After that first appointment, I went to my radiation sessions alone. For the first few weeks, my sessions took place at 8am, before work. Each session took only about 5 minutes from walking into the radiation room, getting settled on the table, being irradiated, and walking back out. It took longer to get undressed and redressed than it did to be treated. The first session was pretty emotionally traumatic. Just the reality of being on the table, and the awareness of why I was on that table, were pretty overwhelming. My drive to work from treatment took me right past our neighborhood, and I knew MG was still at home, so I stopped at the house and cried on her shoulder before heading in to work. 

As time when on, treatment sessions were less emotionally painful, or at least I got used to them. I got used to seeing the other patients in the waiting room, but never for very long, because they did an excellent job of moving patients in and out of the waiting room quickly. However, the treatments themselves were increasingly physically painful as the radiation started to work. Even before my skin started showing signs of radiation burns, I felt a deadening feeling in my breast, which eventually became pretty painful. As soon as I started to feel that pain, I asked for samples of Biofine Emulsion Cream, which is supposed to help prevent permanent discoloration from radiation burns. The physician’s assistant resisted giving me the samples, saying that I “shouldn’t be having pain already,” and that I didn’t need the cream, but I was persistent until I got what I wanted. The cream did not seem to help with the sensations I was having inside my breast, but ultimately it did protect me from permanent skin discoloration in that breast. So, whether I really “needed” it so soon or not, I’m glad I started using it when I did. 

He may have been right, as it turns out that months after radiation was over my breast surgeon identified an infected lymph node at the tumor site through my first post-treatment mammogram. This infection may have been what was causing me to have pain so early, or the infection could have been caused by the radiation itself. Either way, if not for this infection, I probably would not have been having pain so soon into treatment. 

If you are going through a health crisis, cancer or anything else, it is important that you be your own best advocate. Nobody else knows what is happening inside your body like you do. If you have pain, and the health care professionals around you say, “you shouldn’t” have that pain, you need to be persistent about finding out why you are having that pain. At the time, I didn’t now enough to realize that I should have been more persistent about getting help with the pain in my breast, but as I continued on my cancer journey, after learning my lesson from this thankfully mild infection, I paid closer attention to what was happening in my body and became more vocal about it. I got better at being my own best advocate. 

When I was going through radiation therapy in 2002, the treatment protocol for DCIS was five and half weeks of irradiating the entire breast, followed by 5 sessions of radiation targeting only the tumor site. By the time we got to those last five days, my tumor site was already so painful that I couldn’t wear a bra. The targeted radiation ended up creating a raw, seeping blister, which just happened to form on that fold between my breast and my armpit. So then, in addition to the pain I was feeling on the inside of my breast, I was having all of this pain on the skin of my breast. The only shirts I could tolerate wearing were men’s cotton t-shirts and even those could not prevent the blistered skin from folding in on itself. Which was very painful. 

In the days following the conclusion of my radiation therapy, I often found myself crying for no apparent reason. Or for little, inconsequential reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for Thanksgiving that year, the same sister that came to town for the surgeries, and just being very emotional the whole time we were there. 

Fortunately, the blister eventually crusted over, became less painful, and started to heal. I also became less raw emotionally, although I continued to struggle with my fear of recurrence. The radiation burn on my breast eventually faded. When sufficient time had passed, I was directed to go in for my first post-treatment mammogram. This mammogram did two things: it confirmed that there was no cancer left in my breast, and it indicated that one of my lymph nodes was inflamed. My breast surgeon did an in-office needle aspiration of that lymph node, to test it for infection, and in the meantime put me on a general antibiotic. By the time the test results on that lymph node were back, and confirmed that there was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone. 

This in-office procedure, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis. That is the life of someone who has been treated for breast cancer, or for any cancer really. Anything that looks remotely related to your cancer, even if it was an early-stage and successfully-treated cancer, means extra tests and holding your breath until you get the “all clear” yet again. And no matter how many times they tell you that you are fine, you still feel what we survivors call “scanxiety,” and I’m not sure you ever really get used to it. The further you get away from your diagnosis, the more practice you have focusing away from the anxiety, but it never really goes away.

Chapter 4 - DCIS Diagnosis (Part 2)

 

The Xanax worked great. I slept easily the night before the surgery, even though I was nervous about the next day. And I was relatively calm in the morning. Even though my fear wanted me to refuse to walk into the surgery center, my feet kept moving me forward. Once I had been admitted and they had gotten my IV in, they let MG, E, and C come back and wait with me for the surgeon. (Again, this was pre-COVID. I miss those days when the patient could have their support people with them during these difficult moments.)

This was my first surgery ever. I was afraid of the possible diagnosis, but what was most upsetting was being on a gurney.  It reminded me of my Mom’s crisis that summer; I think for my sister and for me, and that was upsetting.  It was scary laying there on that gurney, not really knowing what this was going to be like, and having to put my life in the hands of the medical staff, when my mother had almost died in another hospital not that long ago.

We didn’t have much time to dwell on that before the anesthesiologist came with a syringe of Valium, and after that, I really wasn’t nervous or upset at all. (Since that day, I have known that whenever I am facing a procedure or surgery, I just have to stay calm until they come with the “happy juice” and then I know that it will be smooth sailing from there.) Then they came and wheeled me into the operating room, which was cold and filled with equipment and nurses and my surgeon.  Before I knew it, I was out.  

Then, for some reason, I woke up.  At first, I had no idea where I was. All I could see was blue, which was a surgical drape that they had hanging in front of my face.  I think they do this to keep the surgical field sterile, but it also kept me from seeing what the surgeon was doing. I was crying when I woke up, which I have learned is how I react to most anesthesia when I’m waking up.  I called for MG, who obviously wasn’t there, and then I called for the surgeon.  She answered me.  I said I wanted to see her, and she said she was busy, and that I needed to try to calm down.  Another moment that is funny looking back on it. Then the anesthesiologist said that I could look at him, and I turned my head to look at him, and the next thing I knew I was waking up in the post-op room.  Crying again and asking for MG, with the nurse assuring me that I would see her soon.

Soon I was awake enough to understand where I was and to remember why MG wasn’t with me.  Then the nurse moved me to the recovery room, where MG, E and C came in to wait with me until I was ready to go home.  First, I had to successfully drink ginger ale and eat some toast.  Then, my sister had bought me this teddy bear in the gift shop, which came with a container of peanut M&Ms, and I ate all of them.  So the staff agreed I was ready at go home. They won’t let you leave until you pee first, and are able to walk to and from the bathroom without passing out. Then they let me get dressed, which is when I noticed how sore my breast was from the surgery. They gave me more pain medicine, I rested for a few minutes, they brought me a wheelchair, and it was time to go home.  MG went to get the car, the nurse wheeled me down to the entrance, and we were on our way home.

As we were leaving, I gave the teddy bear to this young woman who was in the recovery room with her one year old son.  He had just had back surgery, not the first of his young life.  He had a while to wait before they would let her take him home, and he was getting restless, so I thought he could use the distraction of the new teddy bear.

Recovery from this surgery was more painful and took longer than recovery from the biopsy.  The incision was near my left armpit, and I had to wear these front-zip sports bras, which I could get on and off without raising my arms over my head. I could only wear button-down shirts, which was fine, since it was still summer.  The bras fit pretty snugly to provide compression, but even so, when I was sitting up or standing, the weight of my breast made the incision hurt. Also, my skin had a pretty painful reaction to the surgical tape that was holding the bandage in place.  Every time we changed the bandage, we could see that the rash was getting worse.  Eventually, my skin started coming off with the adhesive, which hurt. This reaction to medical tape got worse with every surgery I had after this, so now medical adhesive is always on my list of allergies.

The first time we changed the bandage, I saw the incision and the stitches and got really queasy. I was afraid to even touch it.  MG was not queasy at all, thank God, so she had me look away and changed the bandage for me.  Over the next few days, it got a little easier for me to look at the incision, probably because it got less bloody and bruised, but I never really got used to it. Bathing after breast surgery was a little difficult, but not too bad; at least, not after a simple biopsy like this one.  (Which didn’t feel simple at the time, believe me, but in comparison with my later experiences, it really was.) I had to use a mild, anti-bacterial body wash, and my surgeon told me not to let the water hit the incision directly. At first, the incision was sealed in a waterproof bandage, like plastic.  But once that bandage started coming off, we started having to tape fresh, non-stick gauze over it every day.  It had to be non-stick, so it wouldn’t pull on the stitches. When I showered, I would lather up my shoulders and neck, and then stand with my back to the shower, so that the lather would rinse down the incision, cleaning it but not letting the water hit it directly. 

After about a week, we went in to have the stitches taken out.  I was nervous, assuming it would hurt.  However, other than a little tug feeling when she snipped the knots on the threads, I didn’t feel anything.  After the stitches were out, I could shower like normal.

Getting the stitches out was easier than expected, but hearing the results of the biopsy was not.  Dr. G told us that inside the precancerous tissue they found a very small malignancy (tumor), less than a centimeter across, and that I had what they call ductal carcinoma in situ (DCIS)[1], or non-invasive breast cancer.  In other words, the breast cancer had not yet escaped its original site in the milk duct nor begun invading the tissue surrounding the original tumor.  At first, though, all I heard was the word “cancer.” All I could feel for the first few minutes was the fear that comes with hearing that word.  “Am I going to die?” That was the first thing I thought of.  Cancer. How could I have cancer? I felt fine.  We hadn’t found a lump, I had no symptoms, nothing.  We had been talking about the odds being in my favor at every step of this process, but here I was, with a diagnosis of breast cancer. I felt numb, in shock.  

Dr. G thought she had gotten the whole tumor out, but she needed to go back in and make sure they had clear margins[2]around the tumor site.  This news was almost more upsetting to me than hearing the “C” word.  I didn’t want to have another surgery; I was just getting over the last one.  Plus, we had reservations for a long weekend in Provincetown, and I didn’t want to cancel it. The surgeon assured us that the second surgery would go just as smoothly as they first, and that we could wait until after our vacation. She said that I would need to meet with an oncologist to talk about treatment options, which would probably include radiation therapy. So we scheduled the next surgery for after our trip, and she gave us a referral to an oncologist.  And then MG and I were supposed to go back to work.

You have breast cancer, but you have to go back to work. How do you do the that? How could it be true that I had breast cancer? I felt fine. There was never any lump; the image on the mammogram was just microscopic specks.  I saw them myself. How could they be cancer?  I couldn’t just go back to work.  Instead, we decided to have lunch at the Friendly’s in our neighborhood.  We had met at the doctor’s office, so I had to drive myself to the restaurant.  Somehow I got there.  While I was waiting for MG, I was trying to wrap my mind around this new identity: “breast cancer survivor.” What did that mean? Was I a survivor if I was never sick? What would radiation therapy be like? How could I prepare myself for something I could not even imagine?

More importantly, how could I go back to a job that felt meaningless to me now that I knew I was vulnerable to something like cancer? I didn’t want to die… ever… and have my tombstone read “she wished she’d done something useful with her life.”  Back in 2001, I had spent 6 months being unemployed, and MG and I had talked about my going to graduate school for my master’s degree in social work. At the time, the idea of returning to school was intimidating: What if I wasn’t any good at it? What would our lives be like without my income? What if I didn’t like the new career after spending all that money getting the degree? I was just too afraid of so much change, so I didn’t look into it. I just kept looking for another job in my field until I found one. But that day, the day I was told I had breast cancer, I decided that it was time to take the leap. So, for the next few months, while I was going through treatment, I was also applying to graduate school. It felt good to be taking charge of my life in one area when my health felt so out of my own control. 

We often hear people refer to cancer as a kind of “wake up call” in their life.  It could be about their career, as DCIS was for me, it could be about their relationships, or about how they take care of themselves. There’s just something about being confronted with your own mortality that gives you pause, makes you take stock of your life, inspires you to change those things that don’t work.  Unless it doesn’t, which is perfectly fine! 

“Life is too short” – we hear that a lot. When you have cancer, life can suddenly feel so short you don’t want to waste any more time doing anything that doesn’t feed your soul or make you happy. This is why some people call cancer “the great motivator.”  It's also why some people talk about looking for the “silver lining” of cancer, or even worse, tell you that you should find a silver lining in your own cancer. They talk about the “power of positive thinking,” the importance of having the “right attitude.” What IS the right attitude? Really, nobody has any right to expect any particular attitude from you. We shouldn’t put that kind of pressure on ourselves, let alone on anyone else. If you feel positive at any point during diagnosis and treatment, that’s great. If something positive comes out of your experience, I am happy for you. I also know, from my own experience and the experience of countless other cancer patients that I have known, that even if embrace the idea that a positive attitude will help, even if we find positive moments, we can also have some negative moments along the way. We have pain, we have fear, we get angry, we get frustrated and impatient. We grieve our losses. We ask “why me?” We get sick of people  saying “you look great” when we hate the way we look in the mirror. Those moments don’t mean we aren’t being positive. We can be positive and still have negative feelings. Don’t let anyone tell you otherwise.

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[1] Ductal carcinoma in situ (DCIS) is often considered the earliest form of breast cancer, or stage 0. In DCIS, abnormal cells multiply and form a growth within a milk duct of your breast. DCIS is noninvasive, meaning it hasn't spread out of the milk duct to invade other parts of the breast. DCIS is usually found during mammogram screenings, but it can be difficult to detect. Because of increased screening with mammograms, the rate at which DCIS is diagnosed has increased dramatically in recent years. While DCIS isn't life-threatening, it does require treatment to prevent the condition from becoming invasive. Most women with DCIS are effectively treated with breast-conserving surgery and radiation (http://www.mayoclinic.com).

[2] Clear margins mean that the edges of the tissue around the tumor are free of cancer cells. If the margins are clear, all the cancer had been removed (http://www.breastcancer.org/symptoms/diagnosis/margins.jsp)

Chapter 4 - DCIS Diagnosis (Part 1)

From the moment my gynecologist said there was a suspicious area in my left breast, things started moving really, really fast.  I had my first appointment with Dr. G just a few days later.  She was going to review the images and decide if I needed any tests, but other than that, I had no idea what to expect. Dr. G said that based on the images, which showed what she called an area of clustered micro calcifications[1] we should have a stereotactic core needle biopsy.[2] I had an appointment for this biopsy in less than a week.

The morning of the biopsy, I was feeling very anxious.  In part, because even though Dr. G had described it in detail, I was still having trouble imagining what it would be like.  But mostly, I was anxious because I was getting tested for breast cancer.  Even if you don’t have any breast cancer in your family, it is hard to go into a procedure like a breast biopsy without some degree of anxiety.  That morning, I prepared my bowl of cereal, set it down on the kitchen counter, and my kitten Stanley jumped up, flipped it into the air, and spilled milk and cereal all over the kitchen floor.  In retrospect, this is a funny moment, but at the time, it only added to my anxiety.

While MG and I were in the waiting room, her Mom came by to wish us luck and to tell us not to worry. I hadn’t told my own mother about what was happening. She was still very demented from her own health crisis, but even if she wasn’t, she had never been the kind of Mom that I would talk to about things like this until after they were over, if at all.  So to have MG’s Mom there for us was very comforting.

Hearing the details of how the biopsy was going to work was one thing, but actually going through it was very different.  For one thing, there was the table.  It was a wide table, pretty tall, with a hole at one end. The nurse prepping me for the biopsy had me climb up and lay face down on this table and put my left breast in the hole.  This hole was then closed until it was a clamp around my breast, basically anchoring me to the table.  This is to keep the breast from moving during the procedure. It felt as weird as it sounds, but it did not hurt. The radiologist used computer images of my breast to help him find the cluster of microcalcifications, and then used the computer to guide the machine to take out tissue for the biopsy.  I asked to see the images before the procedure, and frankly, the cluster was so microscopic I couldn’t believe anyone ever noticed it.  It made me really appreciate the technology of mammography, but also the skill of the radiologists who reviewed the images. 

The Novocain they used to numb my breast started to wear off during the biopsy, probably because set-up for the test took longer than usual.  They gave me a second shot, which kept my breast numb, but which also caused a pretty strong physical reaction. My body started getting twitchy, and I started getting emotionally upset and agitated.  

Novocain numbs the area where you inject it, and it contains epinephrine to minimize bleeding.  Unfortunately, I am sensitive to epinephrine, although I didn’t know this about myself before the biopsy.  The second shot was a little too much for me.  When it kicked in, I started twitching so much that the attending nurse had to hold me down on the table by my shoulders.  When the biopsy was over, she had me turn over on my back so that they could ice the biopsy site.  I was still shaking all over, and I didn’t understand why, so I started crying pretty hard.  I felt hysterical.  Luckily, the nurse was very patient and understanding, and she let me cry myself out.  We talked about the test, about my fears about the results, and about what I had been through with my Mom during that summer.  After a while, she figured out that part of what was happening to me was a reaction to the Novocain, although part of it was clearly my anxiety about the test and about my Mom’s health.

After a few minutes, I was able to calm down enough to get off the table and return to the changing room.  After I was dressed, the nurse bought me out to MG in the waiting room.  She explained about my reaction to the Novocain, and made sure that we both understood the instructions on how to take care of the biopsy site and what to do if I had any problems.  They call these “aftercare instructions” and you need to understand them so that you don’t get an infection, and so that you can recognize signs of infection if you develop one. They always warn you about the potential for infection, and the potential for excessive bleeding.  I’m sure this is because these risks are very real, but none of these things ever happened to me, although I felt like MG and I were prepared for the possibility, because we made sure to understand the aftercare instructions for every procedure or surgery I had.

I was still a little jittery when we left, even as we were walking out to the car, but about five minutes into the drive home, the jitters passed, as did much of my emotional upset.  This convinced me that most of my reaction to the biopsy was caused by the epinephrine in the Novocain.  This is a good thing to know about yourself – since then, I have had my dentist use Lidocaine, which is Novocain without epinephrine in it, and I have learned that I am not nearly as anxious when I am getting fillings as I used to be.

Physical recovery from the biopsy was pretty easy.  The procedure only leaves a little incision and some bruising and swelling, which is minimized by the epinephrine in the Novocain.  The nurse had given me this little ice disk, about 2 inches across, which I could tuck right into my sports bray, and I used it to ice the incision site every hour or so, and I took some Ibuprofen for the pain. I was able to return to work in a couple of days.  My breast surgeon had said the results would be back by a specific day, so MG and I planned to meet up at my office and call her together for the results.  MG came over to the office, we took my cell phone outside, and called the surgeon.  I remember that it was a nice, clear summer day in early August.  We got Dr. G on the phone, and she told us that the biopsy had revealed what she called “atypical ductal hyperplasia[3]” or precancerous tissue in my breast.  It was her recommendation that we go to the next step, a surgical biopsy, to remove all of the precancerous tissue from my breast.

As scary as this news was, she sounded pretty confident that the odds were in my favor that this would not turn out to be a diagnosis of breast cancer. So, we set a date for what she called an excisional or surgical biopsy, which is also known as a lumpectomy. This time, based on the amount of anxiety I had before and during the core needle biopsy, I requested some medication for anxiety, and she prescribed one Xanax pill, half of which I was to take the night before the procedure, and half that I would take that morning.  The biopsy itself would be done in the outpatient surgical center in her office building.  My sister E and her husband came into town the night before, to be with MG and me the day of the surgery. After the surgery, they would stay with me at the house for the afternoon, so that MG could go back to work.

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[1] Breast calcifications are calcium deposits inside the breast which appear as white spots or flecks on the mammogram image. Microcalcifications appear as extremely fine white specks on the image, are usually benign but can sometimes be a sign of breast cancer (Mayo clinic).

[2] A core needle biopsy is a “through the skin" (percutaneous) procedure that involves removing small samples of breast tissue using a hollow "core" needle. For lumps or lesions that can be felt by hand, this is accomplished by fixing the lesion with one hand and performing a freehand needle biopsy with the other. In the case of non-palpable lesions (those unable to be felt), stereotactic (computer-guided) mammography or ultrasound image guidance is used. Stereotactic mammography uses computers to pinpoint the exact location of a breast mass based on mammograms taken from two different angles. The computer coordinates help the physician to guide the needle to the correct area in the breast. With ultrasound, the radiologist or surgeon watches the needle on the ultrasound monitor to help guide it to the area of concern.  The needle used during core needle biopsy is larger than the needle used with fine needle aspirations (usually done in your doctor’s office), and has a special cutting edge. 

[3] Atypical hyperplasia is caused by a disruption in normal cell growth in breast tissue, which causes an over-production of normal-looking cells that accumulate and begin to look abnormal.  These cells can develop into ductal carcinoma in situ, or noninvasive breast cancer in the milk duct.  This can develop into invasive cancer, which can invade the surrounding breast tissue, lymph channels or blood vessels (Mayo Clinic).

I'm Lucky To Be Here

On May 2, 2008 I got my last chemo treatment.

At the time, I knew it was "the last one" but I had trouble believing I wouldn't be back there again. Now, 15 years later, I think I believe it.

This is the tattoo I got on May 2, 2009 to celebrate my first year of survival. It's "courage" in Gaelic.

In very early sobriety, I heard things like "Fear is the absence of faith, faith is the absence of fear" and "Courage is fear that has said its prayers." I used to keep a copy of the courage phrase on the side of my computer monitor at work, to remind me that if I was stuck in fear, faith was my way out. During treatment, I asked my family and friends to help me remember that if I was filled with fear, I needed to remember to have faith. They often reminded me of that on my lowest days, and for that I will forever be grateful.

Cancer treatment requires a lot of faith: faith in yourself, that you can endure it - that you have the physical and emotional stamina for the surgeries, the radiation, the chemo, whatever is required of you to fight; faith in your family and friends, that they will hold you through it; faith in your doctors, that they will administer your treatments safely and correctly, that they will pay attention to you, help you with what you need; faith in your insurance company, that they will pay for your treatments and minimize the hassle so you can focus on treatment and recovery; and faith in whatever higher power or god you turn to in the darkest moments of the night.

Not all faith is rewarded. For sure, you will be disappointed by your insurance company; in America, that goes without saying, really. Some of your doctors my fail you. Some of your friends and family may disappoint you. Sometimes your closest person will disappoint you. Your body may fail you. Your outcomes may force you to question even your faith in that higher power.

Today I am grateful that I had very few disappointments during treatment. I had the support of my wife, our families, friends, professional colleagues who became friends, my doctors, nurses, clinical staff (back when healthcare in America wasn't so broken as it is now). My body was able to handle all of the trauma I endured during treatment. My cancer responded to treatment, and so far it has not returned.

Not everyone is as fortunate. I have known people whose partners left them during treatment, who lost their jobs and health insurance because they couldn't work during treatment, who struggled to get the support they need from family and friends, whose bodies couldn't take the trauma, whose cancers were too advanced, or whose cancers were untreatable.

If you know someone who is facing cancer, please think about them. Patients seldom have an answer for "just let me know wha you need," but that doesn't mean they don't need you. It's hard to ask for things. Offer specific types of support, and they can react to those specifics. Maybe they can use help with the expenses associated with their cancer - I have seen some very successful fundraisers to support individual cancer battles. If you're the organizing type, you could do that.

Or maybe you prefer to organize a meal delivery network with family and friends; this is especially useful if they have kids, because kids have to eat no matter what. I used to sign up on a meal calendar to make lasagna for friends while the Dad was going through chemo. It helped them on that day, but it helped me feel like I was paying things forward, too. If you're not big on cooking or managing a meal delivery network, you could take donations to buy them a home delivery meal plan. Or to hire a housekeeper for them.

Maybe you could take their kids once a week to the zoo, or a trampoline place, or rock climbing, so they can forget for a while that their parent if sick, and their parent can have an afternoon to just rest and focus on themselves. Maybe you have other ideas of how you can support them.

Any little thing can make a huge difference to someone in cancer treatment or recovery or who is living with cancer.

Chapter 3 – Coming Out to My Breast Surgeon

When I was diagnosed in 2002, it was not uncommon to hear about lesbians experiencing hostility in healthcare settings because of their sexual orientation, or for partners to be left out of each other’s healthcare altogether. And it wasn’t very common to hear about lesbians who were open with their healthcare providers about their sexual orientation or same-sex relationships. This is the context in which I was facing breast cancer.  

Even though my gynecologist knew I was connected to MG and her family, we had yet to tell her that we were a couple. From our perspective it seemed implicit, but we weren’t comfortable yet making it explicit, and it hadn’t seemed important enough in that setting to take the risk. I was so used to just answering no to birth control questions, and having that be the end of that particular line of questioning. I had never had a gynecologist pursue the topic any further or ask for clarification about my sexual orientation, and there were never any questions about sexual orientation or non-heterosexual sexual activity. 

But now we were facing the possibility of breast cancer, and I needed MG by my side and visible to the doctors, so MG went with me to my first appointment with the breast surgeon.  We were both nervous.  While we were waiting for my appointment, we saw two other women in the waiting room, who looked to me like a lesbian couple.  I thought, hmmm, maybe this doctor is going to be okay.  I mean, if she’s a breast surgeon, most of her patients are women, so she has to have her fair share of lesbians among those women, right? So, when we met her that day, I introduced MG as my partner.  I wanted to make sure that she was aware of our relationship right out of the gate, rather than waiting until the “right moment” or an “appropriate time” and finding myself paralyzed by fear in situations when I need MG the most.  She didn’t even blink, which I loved about her.  She included MG in the conversation that day (and every appointment after that) asking her if she had questions, making sure that she and I both understand what she was telling us. 

This is the kind of reaction you want from your potential surgeon, or from any healthcare provider. And if you are lucky, it’s the kind of reaction you get.  Now, if she had been freaked out about my partner being a woman (something I have not encountered even once on this journey, thankfully), I would have had to either talk to her about her reaction and see if she could find a way to be more accepting, or I would have had to reconsider my choice of surgeon.  Since we really felt comfortable with her all around, I’m very glad that we didn’t have to worry about her acceptance of our relationship.

In addition to her acceptance of our relationship, the surgeon became an important source of information for me when I was facing new cancer care providers and medical settings. Based on her reactions, I was more confident about being open with new providers about our relationship. My ability to approach new providers with that confidence, as well as the changing attitudes towards the LGBTQ community in this area and in our community, may be why I have always had positive experiences with cancer care providers, as well as any other healthcare providers. In addition to her influence on my confidence levels with other providers, if I ever had any doubt about the kind of reactions I might get, I could ask her if she felt that provider or facility is safe.  She was very familiar with the local health care system and, as a heterosexual provider, had a great “insider” perspective on other providers’ attitudes about LGBT patients. She always understood why I might be concerned, and she never steered me wrong about the kind of reaction I could expect in any setting. 

Because of our confidence in my breast surgeon, we came out to everyone else involved with my cancer care. With the oncologists, radiation oncologist, with nurses, office staff, with everyone. And this also extended to being more open with my other healthcare providers as well – primary care, gynecology, allergist, just about everyone. Not that many of them needed to be told; I think it was obvious to most of our routine providers already, they just never brought it up on their own. Their intake forms never asked, their routine medical records update forms didn’t ask. MG was always my emergency contact, but I was never sure what I should list in the “relationship” box next to her name. Even after our wedding in 2005, it wasn’t until 2010 when our state passed legislation for insurance providers to recognize same-sex marriage performed in other localities where it was legal, that I felt comfortable listing MG as my spouse, rather than my “significant other” or “partner.” When the US finally recognized same-sex marriage as legal in 2013, we could feel comfortable choosing “married” as our relationship status or listing each other as “spouse.” 

I remember being particularly concerned in January 2008, when I was preparing for my mastectomy and reconstruction, which would involve a few days in the ICU before being moved to the regular post-surgery unit. I was very worried that MG would be denied the right to stay with me in the hospital. Especially the first night. This was pre-COVID, when you could have people stay with you overnight in your room or, in the case of ICU stays, in the family waiting room but with access to you throughout the night. But I had heard stories about same-sex partners being denied that right, and I had one family member who suggested that she should be the one to stay with me that night instead of my wife, as she was my “real family.” If my own family member could be so wrong about how important MG was to me, I worried that nurses or staff physicians might also be that wrong.  I took that concern to my breast surgeon, and she assured me that she had other lesbian patients have the same procedure in the same hospital, who stayed in the same ICU, and none of them had ever reported facing homophobia there. She also offered to mention how important MG was to me, and to assure that she would have full access to me in the hospital. Because she was so understanding about my concerns, I had full faith we would be treated just like any other patient and their partner. And we were.