Til Death Do Us Part by Kate Strosser

“To love and honor until death do us part” is a phrase often used in marriage ceremonies. On my wedding day, October 17, 1981, death was not on my mind. If I had been asked about it, I would have said that I expected to outlive my new husband. As he is seven years older and takes high blood pressure medication, I figured it was a pretty safe bet that I would outlive him. I had no health concerns, and while my father had heart disease, I took after my mother’s side of the family. My maternal Gram had a long life, and my mother had no known illnesses.

Fast forward to September 2007 when our daughter worked as a neurosurgery nurse and our son was starting his junior year in college. I was immersed in my career at a public university and part-time work as a group fitness instructor for the YMCA. I went for my yearly mammogram a bit late that year. The technician performing the scan asked for repeat pictures. Due to extensive micro-calcifications, I was sent for a stereotactic biopsy and breast MRI. I was told that I had extensive Lobular Carcinoma in Situ, LCIS, in my left breast and it needed to be removed. I found a specialist in breast surgery and traveled south to have an MRI-guided biopsy. Atypical Lobular Hyperplasia was added to my diagnosis.

Due to a family history of breast cancer (both my mother and one of my sisters had ER+ breast cancer since my wedding), I chose a bilateral mastectomy with immediate TRAN flap reconstruction (skin-sparing surgery using tissue from my abdominal region to construct new breasts). I recovered with flying colors and was happy with my reconstructed “girls” as well as my newly flat stomach. I exercised my way back to fitness and a year after surgery I was teaching three consecutive fitness classes on Saturday mornings. I had also accepted a temporary teaching position at the university that filled my lunch hour plus a fair amount of work at home. I had beat breast cancer to the punch line! I was told there was a small chance of chest wall disease, but not to worry about it as it was exceedingly rare after a double mastectomy.

Just two months later, I noticed a red crescent near my left armpit that looked like chafing from my sports bra. As the redness spread over the next few weeks, I scheduled an appointment with my plastic surgeon, thinking that something was wrong with the transplanted tissue. My PCP put me on antibiotics, which did nothing. I had another breast MRI that showed skin thickening. The surgeon wanted me to see a dermatologist but offered a punch biopsy in the meantime. Two days later he called with the news. I had Inflammatory Breast Cancer and needed to see an oncologist. More tests ensued, and on April 25, 2009, I was officially diagnosed with Stage IV, HER2+++ IBC. I had a bone metastasis to L4 on the right.

Our daughter was being married in Los Cabos in just three weeks and our son’s graduation was in six weeks. The internet told me that many women die within eighteen months of diagnosis and HER2+++ was an aggressive form of cancer. Suddenly, “til death do us part” became real. I was an emotional wreck, in shock, angry and depressed. I would awaken at 2:00 in tears, convinced I would never see future grandchildren, our sons’ wedding or any other important family event.

Instead, I am alive nearly four years later. The journey has not been easy. Chemotherapy every three weeks has taken a toll on my body. I have digestive issues, moderate to severe fatigue, neuropathy in my toes, fingers and lips, and short-term memory issues. I had a second mastectomy, radiation to the left chest, and stereotactic radiation to the L4 area. IBC then spread to my right chest with the addition of bumpy skin metastases. I had one more progression to my bones, a right side rib. Still, I consider myself fortunate. I have responded to all my chemotherapies and I can still enjoy life. Grandchild number two will be born soon, and our son is in a stable relationship with a girl we adore. My husband is soon to retire, and God willing, we will have a few more years to enjoy our life. The FDA recently approved the new targeted combination drug, trastuzumab emtansine (TDM1) and I had my first infusion of it yesterday. “Death” has receded from my immediate consciousness, and I have several trips planned for the rest of 2013. I have learned that no one is guaranteed tomorrow, and I intend to enjoy my life.

[January 2019 Update]
Kate said, “I intend to enjoy my life,” and she did just that. Kate managed to squeeze in travel, time with family (especially her three grandchildren), and advocacy work while in almost constant treatment from her inflammatory breast cancer diagnosis in April 2009 until her passing in March 2017. Kate shared her adventures through photography, documenting a life well lived. No matter the circumstances, Kate managed to retain her wry sense of humor and learned as much as possible so she could advocate for herself and others with metastatic IBC.

March 18, 1994…when I replay that day in my mind, it is in slow motion. It didn’t feel like it that day; it felt like a runaway snowball, out of control, barreling down a mountain. I hadn’t felt sick. My right breast had had some swelling, a lump, and “funky” skin, but I felt okay. However, the grave look on my surgeon’s face and the way he compassionately took my hand let me know it was serious.

What? Start chemotherapy today? You can’t be serious! That’s what they wanted me to do. How was I to call my husband and say, “Come get me; I’ve just had chemo and I can’t drive home?” I needed time to process this news, time to tell my family, time to pray. I returned to work and tried to keep my mind busy. It was a Friday. By late afternoon I got the courage to tell my boss that I would need Monday afternoon off to start chemotherapy. As I shared with him, he began to cry, and I realized immediately that part of this diagnosis entails taking care of those around us…helping them cope.

Over the weekend we called family and friends. We would need their help and support. I had my waist-length hair cut short and learned all I could about this deadly invader, inflammatory breast cancer. On Monday, when I returned to work, my colleagues were shocked to see my short hair. It was the perfect intro to tell them about my diagnosis. I wanted their help over the coming months, and they couldn’t help me if they didn’t know what was happening or what I needed.

I tolerated the chemo, surgery, radiation, and seemingly endless doctor appointments and tests without missing more than two weeks of work. It was therapeutic for me to continue working; it helped me cope and kept some normalcy to my life.

My husband was there for me every step of the way. What would I have done without him? In 1994, there wasn’t much to be found about IBC. The little bit I did find was not encouraging. My prognosis was not good. I reasoned that no one gets out of life alive anyway, so I would just have to change my expectations of living to “old age” and do a better job of living now.

A funny thing happened to me as a side effect of cancer treatment. When the surgeon removed my breast, he apparently loosened my tongue! I hadn’t learned in anatomy that they were connected! A change came over me. I began telling everyone about my cancer experience. People needed to know it could happen to THEM…that no one is immune to breast cancer. Since that time I have taken every opportunity to speak out, stressing that women need to take responsibility for their own health. I started a support group, made TV spots, did interviews, and tried to put a face to this breast cancer. There are all things I would not have done before IBC.

Following treatment, I decided to look to the future again. I had started my education in 1976 to become a Registered Nurse but was unable to complete the program. Later, I had become a Licensed Practical Nurse. But still I dreamed of being an R.N. So, in October 1996 (two years after my diagnosis), I completed an associate degree and became a Registered Nurse!! In 1998, since I was still alive and planned on staying that way, I entered school again … while working full time! Finally, August 1999, I walked across the stage and received my bachelor’s degree (BSN) in nursing!!

None of us knows how long we will live. Those of us who have faced this cancer have the advantage (Yes, I said advantage!) of being reminded of this fact daily. Hopefully I can continue to use this realization to make my life and the lives of those around me better than they would have otherwise been.

To my IBC friends, I hope you get some inspiration from my story. My course was tolerable and uneventful, compared to some stories I have heard. I hope this sends women with new symptoms running to the doctor and demanding IBC screening, as it may greatly affect your outcome. And, I give a huge shout out to the courageous women who did not get prompt diagnosis and are fighting with us today and winning!

November 4, 2017 – I went with my husband and some old friends to an oyster roast. I had not done this in years and it was thoroughly enjoyable. I think I shucked and ate four dozen oysters! A few weeks later my life changed drastically, and I told those same friends, “How I wish I could say it was from the oysters!”

November 7, 2017 – I noticed a round cherry spot the size of a quarter inside my left breast. It felt like there was a small piece of wood in the lower quadrant near my nipple. How on earth did I wake up to such a thing? By the end of the day, my breast was enlarged, veiny, and my nipple slightly inverted.

November 9, 2017 – I saw my gynecologist, who sent me to radiology the next day. It was quite obvious after mammogram and ultrasound that the radiologist was concerned. A punch biopsy was scheduled for the following week with guided ultrasound. It was a horrible experience with doctors talking over me as if I wasn’t there, never telling me anything.

November 16, 2017 – My original diagnosis was Infiltrative Ductal Carcinoma, hormone positive, HER2neu negative. It seemed very doable. I requested a referral to a major medical center and had to be persistent, as it was the week before Thanksgiving.

November 22, 2017 – I saw a highly respected oncology surgeon who I will refer to as Dr. A. My mammogram from nine months ago showed nothing suspicious. My cherry spot was a lighter pink but it was still there. Dr. A wanted to biopsy that spot to rule out Inflammatory Breast Cancer. He told me that, although this is a “no lump required” breast cancer, a percentage of patients have a lump.

November 27, 2017 – The Monday after Thanksgiving, Dr. A called toward the end of the day “to go over my treatment.” The rest was a blur because I learned I had Inflammatory Breast Cancer. I still cannot look out my work window at sunset without remembering that phone call. However, he told me his office would take care of everything I needed to do to start treatment, and they did. He told me he had two other IBC patients who were doing great.

Note: I ran into my gynecologist a few weeks later and he told me in his entire 40+ year career, he had never seen a case of Inflammatory Breast Cancer.

November 29, 2017 – The oncology visit felt surreal to be sure. My excellent oncologist, who I refer to as Dr. B, explained what my treatment would include over the next ten years. She told me with confidence that her patients did great on chemo. I walked out feeling more hopeful. I was fortunate within a short amount of time to meet some 10 – 17-year IBC survivors who made that hope seem even more real.

December 14, 2017 – Chemo started one month after diagnosis. Dr. B. was mostly right, that it was not as bad as I expected, but there were moments. Gastric pain, diarrhea, constipation, thrush, malaise, ridges in fingernails, shortness of breath. Have you ever had someone pray for your constipation to end? Well, I have. After my fourth chemo, Dr. A did a vascular ultrasound of my breast and axilla. The tumor was gone and nothing showed up in lymph nodes! I had two more rounds of chemo. I felt strongly about bilateral mastectomy due to my history of fibrocystic disease and many repeat mammograms.

May 11, 2018 – The mastectomy was not a bad experience. The pathology report came back a few days later, which revealed 5mm metastasis to one lymph node. The tumor was completely resolved. There was extensive involvement to the dermal lymphatics covering 11mm. Pathology reports scare me, but I finally accepted I had to trust my physicians’ interpretations and not get too caught up in pathology talk.

June 26, 2018 – I found radiation to be intimidating with all those pictures, holding my breath, and the staff calling out numbers to each other. My treatment included bolus for 15 sessions and booster at the end. They told me to relax, that they had to match the radiation within a hair of the mold that was provided for me. They became my friends, even gave me a cake on my birthday!

From the day I found that cherry spot, I am reaching three years cancer-free. I will probably never go to the Varnam Oyster Roast near Holden Beach, NC, again, but I encourage others to. Life is beautiful in many ways. I have more to tell but will stop for now.

Follow Brenda Denzler from her pre-IBC diagnosis in 2009 through chemotherapy, surgery, radiation and post-treatment in 2011. Here is her journey in her own words. Be sure to read her January 2019 update at the very end.

One day before my birthday in 2009, I asked a friend about my oddly red breast. The redness had persisted for two weeks and, in fact, it had gotten a bit worse during that time. She told me it sounded like inflammatory breast cancer and that I needed to get to the doctor on Monday. Ten days later, everything in my world came crashing down around me when I was definitively diagnosed with IBC.

I wanted to document this experience, so I took photos and I began a blog. Both were a way to keep people informed about what was going on, but, more importantly, they were a way for me to process everything that was happening to me. I’m pleased that now my pictures might help others who are going through, or about to go through, an encounter with IBC. The treatments are hard. The experience can be brutal. But it is doable. Here is how I did it, in pictures.

Pre-treatment. This is what my breast looked like before I began chemo, the first arm of the three-pronged treatment protocol for IBC. The symptoms that were obvious to me were the redness and the fact that my nipple was inverting. The doctors who examined me, however, also identified peau d’orange skin, a thickening of my skin in the area of the inflammation, a bit of swelling in that breast, a lump on my chest wall, and enlarged axillary (armpit) lymph nodes. Subsequent imaging identified five suspicious nodes.

 

Midway through chemotherapy. My doctors were very pleased at how the cancer responded to the chemo. This is what my breast looked like when I was about halfway through it. To me, it looked a little less red and a little less swollen, but other than that, I couldn’t tell a lot of difference. They were happy though. I think they could detect changes in the other features of the disease that were not readily apparent to me. (They never imaged me again, until I requested/demanded it at the end of chemo. Their assessments of how I was responding were based solely on their clinical examination of me.)

 

Mastectomy Day. This picture was taken about two months after the last one. It was the morning that I went in to have this breast surgically removed. As you can see, the breast looks flatter and less swollen. Perhaps a bit less red, though, once again, I wasn’t sure that I saw that much difference. My doctors were pleased with how I had responded to the chemo and insisted I was ready to go to surgery after my body had had a few weeks to recover from the last infusion. I, however, insisted on having a post-chemo ultrasound to verify in a more objective manner that the tumor on my chest wall and the axillary nodes had, in fact, shrunk and that I was ready to go to surgery. (They had, and I was.)

 

Post surgery. This photo was taken sometime during my second-week post-surgery. I can tell because I only have one drain in, but when I came out of surgery, I had two drains. By this point in time, the one in the front had been taken out. If you look carefully between my arm and my trunk, you’ll see a thick, light-colored “string” dangling against the dark background. That’s the second drainage tube. Some women have trouble looking at their surgical scar. I didn’t. I needed to see it when the nurse first changed the dressings and stripped and emptied the drains. It was, after all, my new body. And I needed not to be squeamish about the drains coming out of it, because somebody was going to have to tend to them, and that somebody had to be me. It all really wasn’t that bad. The pain wasn’t bad. I didn’t experience a huge sense of loss in losing my breast. Or did I? What I did notice in the weeks after my surgery was all the young hotties on TV, parading around in their low-cut tops and evening gowns. And I thought, “Will you be next? You seem so unaware of it all, so unaware of what you have and how quickly you could lose it.”

 

Marked for radiation therapy. Radiation came for me almost 8 weeks after my surgery, due to a scheduling snafu with my radiation oncologist. By that time I was pretty well healed up. I had three “ports” angles at which they shoot the rays into you. One went from the back and around the side. The other was the famous “hockey stick” area more toward the center of my chest, in the heart of where the breast had been. And the last was the area above my clavicle to try to hit the lymph nodes up there that had not been taken in surgery. (All three levels of my axillary nodes were removed.) The ink they use to mark the port fields does rub off quickly, and they often had to re-draw the lines on me. You’re best advised to buy some cheap T-shirts to wear under your clothing while you’re in rads. Psychologically, rads was the hardest for me. They line you up on the table, scurry out of the room, close a big, heavy door, and then zap you. All my life I’ve tried to avoid radiation exposure and now this! It was hard to feel good about it. I made a short CD to listen to while I had my treatments. It contained toe-tapping, sing-along songs about burning (“Burn, Baby, Burn,” “Ring of Fire,” “We Didn’t Start the Fire,” etc.) and, in honor of the daily repetition involved in radiation therapy, the Captain and Tennille’s “Do That To Me One More Time (Once Is Never Enough)”! But still, there were days when tears slid down my cheeks and into my ears as laid there and let them do to me what needed to be done.

 

Immediately after last radiation treatment. My skin stood up well to the treatments. You can see where the fields were, and where they ended. It’s like having a really bad sunburn where you didn’t have a shirt covering your skin. I was tender, but it was all bearable. And I was so thankful to be done with it.

 

16 days after last radiation treatment. Radiation, they say, is the gift that keeps on giving. After your treatments end, you continue to “cook” for a week or two, and your skin gets more and more unhappy. This is my skin at its unhappiest. Not pleasant, but it was doable. Actually it was about this time that I had to appear before a grievance panel at work to make my case for why the people who had taken over my department should not have laid me off in the middle of my chemotherapy (which is what had happened). Despite the nasty skin and how tender it was, I was able to dress in appropriately concealing ways and make my case. (I also won, by the way!)

 

This is what my mastectomy scar looked like almost two and a half years since I was diagnosed. All healed up and doing nicely. I think that, as mastectomy scars go, I have a very nice one. It’s not something I’m pleased to have. But it is what it is. It reminds me that I have faced something that was almost unimaginable, before it happened to me. It signifies that despite my overwhelming terror not just about the cancer but about the cancer treatments, I got my courage together and did what I had to do to try to save my life. It was a really bad time in my life. But I made it through. It was doable.

 

Foob into mastectomy bra. My foob (fake boob) being put into my mastectomy bra pocket. I must have had a really good fitter, because I have had no real problems with the weight of the foob or the bra riding up on me. It’s all worked well. I wear the foob when I’m out in public, but not at home, where I go braless. However, in the winter, when I wear lots of layers of clothes, on the weekends I won’t even bother with a foob in public. I just go out and run errands braless, with one flopping boob bouncing around in there! In the summers I wear tanks and T-shirts around my 4.5 acres. I’m braless then, too. If a neighbor comes by, they just have to live with the sight of me a little lop-sided on top. It’s my new body. Deal with it. It’s what I look like, now. It’s the price I have paid to live.

 

This is my mastectomy scar line at 9.5 years out. I received a boost of radiation to the scar line, and have developed telangiectasias there due to the radiation. These red dots are not raised. They don’t itch. They don’t bother me in the least. They are a bit unsightly, but that isn’t an issue for me. (My scar line does itch mildly, from time to time, but there is never a raised “rash” there and we have never found suspicious evidence of the return of cancer there — so I think it’s just some nerve damage that acts up from time to time.) Not everyone develops telangiectasias, but many of us do, so I thought a picture might be useful here.

 

Last picture. My older son is into heavy metal music. He went to a show and came back with this T-shirt for me. On the back it says, “Who are you?” I am a cancer fighter. And so will you be, dear viewer. It’s not fun. It’s not what we would choose. But, having had it happen to us, we deal with it. It is doable. It sucks. But it’s doable. You will find a way through this.

 

Update:
As of early 2019, I am 9.5 years out from my diagnosis. As far as we know, I remain NED (No Evidence of Disease). There are some subtle indications that the cancer may be returning…but if it is, we can’t find where it is, yet. So we wait and watch. After all, those subtle indications truly may be nothing at all. Note: The waiting and uncertainty are not as hard now as they were years ago, right after my treatments had ended. But it’s not nothing, either. I think with time those of us who are fortunate enough to become NED learn to cope with the uncertainty, which probably never goes totally away.

My general health has been a problem since my treatment. I didn’t recover like I expected to — and was expected to! Long story short, we finally discovered that I have an autoimmune condition that has been killing off my thyroid gland. Now that we’re dealing with that, I’m feeling noticeably better. I understand that thyroid problems in the wake of breast cancer treatment is not uncommon. In my case, I suspect it was an inherited proclivity for it plus the cancer treatment that sent me over the edge.

In these survivorship years, I’ve retired, become a grandma three times, become a published writer with a monthly column in a local newspaper, grown my freelance editing business, and nearly completed a book manuscript. I volunteer with my local hospice, and I often eat out with old and new friends. I’ve lost friends to this blasted cancer, and lost beloved pets to cancer and (would you believe it) to bunnies. Death is hard to accept, but if you make friends as part of an IBC community you are bound to lose some of them at times. It humbles me, that I continue to live, and makes me determined to enjoy as much of my life as I can — life that those I have cared about have been denied.

My oldest grandson (age 7.5 years) asked me this weekend to try to stay alive long enough so that he can get old enough to move out of his parents’ houses and live with me! He doesn’t know a lot about the cancer, I think, but he sees me as “old” (I’m 65). I smiled and told him that by that time, I didn’t think he’d really want to be living with his grandma…but I sure planned to be around then.