Anxiety – Boob Gone Rogue

Wednesday, March 27 – Mammogram

Today was my first mammogram since my diagnostic mammogram 18 months ago. I went by myself, telling Robert that this was just normal screening; I could manage without him. I need to start weaning myself from the dependency of requiring Robert at every damn doctor appointment. Time for me to make checkups normal. Make a new normal, or figure out what is normal. Nothing feels normal anymore, not even a simple doctor appointment or screening tests to insure I am still whatever this “normal” is.

Anyway, I went by myself, and was doing well, until I had to walk up to those doors to the Breast Diagnostic Center. That is when my dragon unfurled from the little ball it curls itself into a niche in my gut, sleeping away peacefully until moments like this. She unfurled her wings and stretched out her tail taking my breath to shallow little gulps, flicking my heart with her tail causing it to beat irregular. I know how to deal with her, pause, take a deep breath despite her wings trying to squeeze my lungs. I take note of what I am hearing, birds chirping, construction work sounds, cars, planes. What do I see, the plants in the planters and landscaping, a butterfly flitting along a small bush plush with flowers, wispy clouds in the sky. I take note of how the air feels, and what I smell. My little dragon is not squeezing my lungs as tightly now, and her tail has stopped thumping against my heart.

I walk through the doors and sign in, take a seat and wait for the front desk to call me to register for my appointment. I continue with my cleansing breaths every few minutes to keep my little ball of anxiety dragon calmed down. She is still active, swirling slowly through my torso, but she is not making me feel like I need to put my head between my knees so I do not pass out, or breathe into a paper bag to keep from hyperventilating. I tell myself her occasional squeeze is really just her hugging me in comfort. I pull out my knitting to keep my hands busy and my mind slightly occupied.

As I sit and wait on the check in desk to call my name, I notice the men and women sitting in the lobby. You can tell those who are in for their annual mammogram/imaging, and have never had anything come up on their scans. They have a bored look to them, completely at ease with themselves, knowing they will walk back out those doors with another year tucked under their belt and a clean report. They have done their diligence in early detection of an insidious hijacking by their own body, and can spend the next year with confidence that their body will not be betraying them. I envy those women and the ease they project at being in this place. I used to be one of those women with my feelings of all is right in the world when I went through my annual screening. No history of Breast Cancer in my family that I was aware of, I breast fed my children, had them earlier in life, all positive actions that reduce your risk of breast cancer, this was just another screening as part of my Women’s Health Management. I miss those days. I never had a thought for those who looked tense or uneasy. I never thought of all the worries that come into this place with these women. It never once crossed my mind how hard it could be for some to walk through those doors.

Then there are the ones with the nervous glances, the ones you can see holding their breath, holding their middles as if they too have a dragon like mine, and are trying to hold it still. Those with a cloud of worry in their eyes. Some have a partner or friend with them, a few, like me are alone to brave this place, the little room, the machine that will squeeze intimate parts of your body into an unrecognizable shape while corners of this machine dig into other parts of your body so you are at the right angle to capture the best images. You can see the jittery movements of hands, not knowing what to do with them. Some stare at my short purple hair and I see a knowing look in their eyes. Yes, she is one of us. One of the group of women who no longer walk through the doors knowing that everything will be OK and another year can go by in confidence. I am now one of the women who walk through the doors to face demons and dragons, to face our own mortality and the fear of the unknown.

I get through the registration for my appointment. Since this is my first mammogram since chemo, three surgeries and radiation, they need a new baseline and this will be a diagnostic mammogram. The nurse at the registration desk gave me the sheet of paper with my history and any relevant information for me to review and give to the tech. I correct a few items and add some information that is missing, and shortly after the tech comes to the door that leads to the back part of the center, where all the imaging, biopsies, and surgery prep procedures are completed.

She leads me to a small room and provides me with the instructions on what to remove and how to wear the gown she has provided. She pulls the curtain to separate me from the rest of the room as she continues to talk to me as I change. She told me she has been looking at my last set of images that led to the biopsy and diagnosis. She makes a comment that the mass was quite large and asks me how long I had felt it before getting it imaged. I explained to her that I felt it for the first time just a couple weeks before the biopsy. She asks me how I am feeling after the lumpectomy, and after a slight pause where I can tell she is reading my file, she adds in the reshaping of the right breast and reduction of my left breast. I explain about the seroma, how it burst though the incision, the months of shoving gauze into my breast, and finally how it would not heal completely, which led to a third surgery to close up the remaining area. I also told her that the mammogram and ultrasound imaging only caught about half the mass, the MRI that was completed the day of my diagnosis, came back with a mass almost twice as large as what was measured in the original imagining.

She then asks me how everything feels now. I explain I still have some numbness on the left breast around the incision areas for the reduction. The right breast is numb in more areas then where I can feel due to the extensive surgeries and sentinel lymph node removal. I also make the comment that I still do not understand how I can be so numb on the right side and yet experience tenderness and hypersensitivity. The Tech explained that due to how much trauma the breast sustained she could not tell me that any of my tenderness, sensitivity and numbness would fade over time. I had changed into the gown by this point and had pulled back the curtain. I looked at her and said, “Well aren’t you full of good news.”

I noticed she still had my last set of digital films up on her screen, so asked her if I could look. She was completely open to letting me see the images. I could clearly see the lump in my right breast. It was white compared to black, gray and grayish white of the rest of my breast tissue. The mass was not clear edged, had little strings of white fading into the surrounding tissue from the large white center of the clearest part of the mass. It took up quite a bit of the lower portion of my beast from the imaging I could see. As I looked at those images, my thoughts were “Ha, I was stronger than you this time. You are gone, and I am still here.”

We proceeded with positioning me for the first round of x-rays, and even though the tech moved the plates slowly to clamp down, flatten and capture as much of my breast tissue as possible, my right breast tenderness was evident from the very first position. I had six different angles taken of each breast in all. After the first four sets, the tech went to consult with the radiologist to be sure she was happy with all the images completed. I asked her if I could look at the current images while I waited. Sure, no problem. This is so different from all my previous mammograms, when I had asked if I could see the images, the techs always denied my requests. I could see the scar tissue in each breast. There was a great deal more scar tissue in the right breast than the left. The scar tissue was very white, and had hard edges compared to the original images from 18 months ago. Some of the edges looked furled and bumpy, but even with those distortions the edges showed clear definition.

The tech returned and said the radiologist wanted two more image angles of each breast and if those came out clear, I would be able to leave. These two angles were the least comfortable and at one point, a corner of the table that holds the bottom plate in place was digging into my armpit. In the less than one minute it took to complete this image, my whole right arm started to tingle.

We completed the x-rays, the tech quickly checked with the radiologist to make sure she was good with the preliminary review. She returned in moments and said I could get dressed and the final report would be sent to both my oncologist and primary care doctor, as well as a note mailed to me with the findings. I took this as a good sign. No rushing me off to ultrasound for more imaging. I am good.

My right breast continued to ache for the remainder of the day and through the night. Now I know I need to take some sort of anti-inflammatory prior to my next mammogram.

The last week of April I, need to get some blood work done, in preparation for my next follow up with Dr. Sikaria (oncologist), the first week of May.

Life is 6 months cancer free

Saturday, September 30 – Disneyland Finally

First, because I have not mentioned this before, since the biopsy, The Lump has remained hard and angry. My boob is tender on the whole bottom side. The bruising is pretty much healed, but The Lump, oh, that lump, it’s harder, hurts, and feels so much bigger now. I can’t tell if that is because it’s angry from the biopsy or if it’s growing. I cannot wear my normal bras anymore. They hurt too much. I ordered some compression tanks and doubled them up to help hold both my breasts in place during the day, but it’s not enough pressure to keep the weight off The Lump.

By the end of the day, it’s achy, and movement or the wrong position is painful. Even sleeping can be irritating. I’m a side sleeper, laying on my left side, my right boob drops to the left, and that creates tension, and The Lump hurts. I try propping it on a pillow to help hold it up, which adds a new kind of pressure, and The Lump hurts. I lay on my right side, and again, no matter how I tilt myself to relieve pressure either from the bed or from the droop, The Lump hurts. I am sure this probably does not help my sleep.

I only take Ambien every few nights, trying to let my natural sleep cycle return normally. I am still waking up in the middle of the night and up before dawn, but my awake periods in the middle of the night are getting smaller. When I take Ambien, I sleep through the night and a little longer into the morning hours, but I am still awake before I would normally wake up, before the biopsy. Today I woke a little after 6 am. I lay in bed and didn’t give up on trying to sleep more. I stayed there until 9 am and did a semi-doze a few times.

Today was the day I had my hair cut. My husband was a little shocked when I got home. He knew I was going to do this and supported me doing this. I finally felt like I had some control over all of this, which helped release some of that gray and red anxiety fear curled in my gut. He has been reluctant to say that I will look just fine without any hair and, at first diagnosis, said I should probably get a wig—anything to help me feel beautiful.

He started losing his hair in his 20s. Hair is an issue for him. He accepts his hair loss, but that doesn’t mean he has to like it. I love his head. Bald has never bothered me. And I’ve seen pictures of him when he had hair. I like him so much better without hair. But I understand his hair issues and his reluctance to say he thinks I will still be beautiful without hair because he does not like his looks without hair. I know this is a sore spot for him.

His reaction to my hair when I got home was not the best. He asked me why I got my hair cut like my mother’s. He’s never liked my mother’s hair. He has always wanted me to be healthy and fit, and my mom, well, she’s obese, and that scares him. Scares him that I will be as well. To have me come home with hair that reminds him of my mother was hitting a little close to his discomfort zone.

I tried not to let it get to me, knowing everything I knew. But it cut a bit. Started all those fears that when all is said and done, my husband will no longer find me attractive. So, he said what he said, and I asked him what he needed me to do to make this better for him. Take it shorter? I sure as hell can’t put any of it back, and quite frankly, with what was happening next week and the following three, I don’t want it back. I want to be able to wash my hair with a washcloth. Plain and simple. He backtracked and tried to make it OK. Realized his reaction was biting.

We left earlier for Disneyland today, and we parked with no issue. It was still crowded. Even Cal Adventure, which usually finds fewer people at this time of year, and you can walk with almost no problems. We stopped to eat at La Brea Bakery. Talk always turns to The Lump. My husband actually felt it for the first time today. He had touched me before, but there was no exploration of The Lump, only light caresses like he was afraid to feel this physically; it might make it more real, and he was afraid he might hurt me. I couldn’t take being the only one feeling this, physically feeling this and wondering if every time I do, is it bigger. I asked him to feel The Lump. Please feel The Lump, that way, he can tell me I am just imagining things. I could tell he didn’t want to do this, but he did it for me. I saw his eyes, and this made it more real. He felt it. Of course, he was feeling the angry Lump, which was so different from the pre-biopsy lump. That one was soft and rubbery. It almost felt like an extension of my rib. Even though it was big, it didn’t feel so sinister, so menacing, so real.

I try not to dwell on the size. Dr. Sikaria said the chemo will shrink The Lump. Chemo starts in ten days. What if all this growing I am trying not to imagine spreads… goes to my lymph nodes? I keep pushing that thought to the back. Nope, I’m not allowed to go there.

As I was saying, of course, talk always turns to The Lump and how this will change me physically. In the past few years, I have been battling chronic and, at times, extremely painful bursitis in my hips. I had to stop wearing heels. It hurt more to try to exercise, and all the stretching I would do throughout the day did little to alleviate the pain. I gave up after a while, and I gained weight at an astonishing rate. I finally felt so uncomfortable with myself that I went to my doctor and asked for help. I’ve been on an eating and exercise plan for almost six months now, with phone calls and office visit checkups. Our goal was 4 pounds a month, and I have been meeting that goal. I am still worried about being attractive to my husband, not knowing what my metamorphosis will be throughout this entire process, and having a hard time believing he will find me attractive on the other side.

He keeps telling me to lose weight and be healthy; that is all that matters to him. He will love me no matter what else happens. After his reaction to my hair, I’m not so sure. I keep this to myself. I don’t want to acknowledge that I am afraid to trust him to love me even if, on the other side of all this, I am no longer attractive to him.

I am not willing to confront him on his failures to be healthy. His now morning Pop Tart addiction. And how I am not the one buying them, nor the cookies. He asked me to stop providing the sweets he had been asking for, so I did. Now he goes and buys them. It’s OK for him to flip off his diet and ignore his elephant in the room. It’s always been OK for him not to have an annual physical, to keep tabs on his heart health despite his family history of heart disease. But I feel there has always been a double standard there. It’s OK for him to die earlier because that is his family history. It’s OK for him to ignore his health, but it’s not OK for me. I’ve tried telling him how this hurts me, how it makes me feel like I don’t matter, but he turns that as if I am being selfish; how could I demand of him a quality of life that he would not want, just to live how much longer? He is very keen on ignorance is bliss regarding anything to do with his health medically. He avoids going to the doctor. It makes me mad sometimes that I feel his expectation of me is to “fight”, make sure I stay healthy, be well, be fit, but he can just do as he pleases. What I would like doesn’t matter.

The disagreement is not worth it. I drop the subject. I know what I want for me, so to hell with him. But there is always that little spot of hurt, an ache in the corner of my heart, that he doesn’t care enough about himself to do whatever it takes to make sure he is doing the best he can for himself. A little brown spot of sorrow. The hurt contains a little spot for me within it, blue, red, and green, and he doesn’t respect me enough to hold himself to the same expectations he has of me. Oh, he will say he doesn’t hold those expectations of me, I am free to do as I please. But I know that is a lie he tells both of us. So I live with this little spot of brown sorrow that has a little spot of hurt, anger, and frustration for me in the corner of my heart. Occasionally one of us will pull it out, we will disagree over it, argue, and then it gets put away to be looked at again some other day. In the grand scheme of things, it remains a tiny spot. But it is a tiny spot that can cause an ache in those few instances when we talk about it and never resolve the disagreement to my satisfaction.

We went into Cal Adventure to see the holiday decorations. Really only in the front of the park, when you first enter, and then Cars Land. That is fantastic. We LOVED discovering all the changes and how they lit everything up once it was dark. We headed over to Disneyland specifically to see the Fireworks show. It’s changed since the last time we actually stayed to watch, and we have not seen the new display with music and lights. After waiting for an hour and a half, the fireworks were canceled due to the winds. We didn’t stay to see the light/music portion of the display. Next time. All in all, it was a good night. Despite my current insecurities and that little sore spot in the corner of my heart, I love spending time with my husband. Life is still hard, but it’s very slowly getting better. Life will be better someday.

Life is picking your battles

Tuesday September 26 – Support Group

We went to our support group meetings. My husband went to his room at the Cancer Wellness Community, and I went to mine. There were about 14 of us total in my group. There was one other “new” person besides me. The group leader had the “veterans” introduce themselves and briefly describe their diagnosis and treatments. Then it was our turn, the two new ones to the group.

There were women there in various stages of hair regrowth or loss, and one gal who had not been to the group in 6 months and they were surprised to see her back. Once you join a group, they ask you to continue going until 18 months after your last treatment, whatever it may be.

As the women took turns introducing themselves, it became evident that their original diagnosis and treatment plans all changed to add additional therapy to their original plan. Those who planned lumpectomy ended up with full mastectomy or even double mastectomy, and so on. One woman now battles lymphedema. This happens randomly when the lymph system stops cycling lymph in that area due to trauma from surgery. This builds up in the surrounding tissue, causing swelling. There is no cure, but some things can be done to help deal with the swelling and discomfort.

I was asked about my thyroid cancer and told them about my experience with that briefly. And around the circle, the discussion kept going, bone pain from Neulasta, nerve pain from the chemo setting in after the second to last round. Being tired, ready for it to finally end. The astonishment at how long I have been scheduled to receive chemo – 5 months. Most of them, it’s been two, maybe 3 months of chemo. Even the beautiful woman to my right said she was diagnosed with the same thing as me. She only had 6 cycles of chemo, three of the drugs that I will be having. She had to have a mastectomy. I don’t know who is more worried now, her or me.

Every one of them has opted for reconstruction.

One was talking about how happy she is to get her eyelashes back; they are finally starting to grow. At this point, about half an inch of hair had regrown on her head.

As I sat there with all my curly red hair, and my fun, blue, green, pink, and purple peeking out from underneath, I realized I love my boobs, and I didn’t want anyone taking them from me. If they do have to go so I can live, I think I may want reconstruction. And all of these women have terrified me. What is going to happen to me? Can I do this? I have always thought of myself as strong, and I can take this on, but oh my God, I can’t do this. I can’t cut off my breasts; I can’t lose my eyelashes! I’m going to lose my fucking eyelashes, my beautiful, thick, long dark lashes that frame my blue eyes and help hide my hooded eyes so they don’t look small. Take my hair, take my eyebrows, and take all my body hair, but I can’t lose my eyelashes….

I don’t think they notice how withdrawn I’ve become during all their talking.
On it goes; they talk about recurrence after being done for 6 months, waking up from surgery, finding the worst-case scenario has happened, scars that have to be repaired, additional surgeries, mouth sores, bone pain, and losing your eyelashes. I can’t do this. Just sit here, be calm, and don’t show them how your insides have turned to jelly. All these women have survived; you can do this. Oh my god, I can’t do this.

The group is done. I smile and thank those who come to say goodbye; I grab my bag and sweater and head to the front to meet my husband. My husband is still in his meeting room. I can hear them talking; he is talking. He is talking to one, maybe two other people, I think. He’s connecting; they are sharing. I, on the other hand, am a quivering mass of overwhelming anxiety, fear, and doubt, and I am going to lose my damn eyelashes.

He finally comes out. He is still talking with one of the guys from his group. He is bonding; I am falling apart. We’re being asked to exit the building so they can lock up. My husband gets a phone number; he’s making connections. This man who thought he would not fit in would not belong is belonging.

Goodbyes are exchanged, and we head to our car. He’s holding my hand, he’s telling me about his group. I just keep nodding, uh-huh, yeah. Then he asks me how I am. My lungs don’t work, all that gray and red fear and anxiety is no longer a tight little ball in the corner of my gut, it’s free, flying throughout my body, my knees want to buckle, my ears buzz, my heart feels as if it has stopped. All this starts to leak out of my eyes. I squeeze them shut, and all I can do is shake my head. No, no, I am not alright. He asks me what is wrong, all I can say is “It’s just too much, it’s too much, I can’t do this yet, it’s too much….” and I crumble and fall to pieces. He’s holding me and saying he’s so sorry. He didn’t mean to break me. He made me do this, and I am broken.

I am so lost. I don’t know how to pull this together right now. I don’t know how to stop the falling apart. It was the damn eyelashes… He’s holding me and telling me we can do this. It doesn’t matter what I physically lose in this process, we will survive this, and be stronger on the other side. He’s getting me to talk, what was it that was so overwhelming? It was all of it. I realize I am in mourning. I am mourning the loss of my life as I have known it to this point. I am mourning the loss of my security, knowing I had beat cancer, I would live a long life watching my family grow, watching our grandson grow, learn, fall in love, be heartbroken fall in love again, have a family. Grow old with my husband. Now all that could be gone. Uncertainty, tests, and anxiety for years until I know this is beat yet again. Mourning the loss of my breasts, which I realized in a moment in that room that I love. I love that I have nursed three children from them and that my husband knows how to touch them just right. I love their weight and shape. How they look in my clothes. I am morning, and they will forever be changed from this. If I only have a lumpectomy, it will change one, and the other will be changed to match.

I am mourning the loss of my innocence in dealing with cancer at this magnitude. I am mourning that I have to know all these things about chemo, and nutrition and lymph nodes, losing my hair, and regrowing eyelashes, dry mouth, nausea, bone pain, exhaustion, battling mouth sores, and radiation burns and surgery, scar tissue, infections, and lymphedema…

Life is broken, life is sad, life has kicked me when I was down.

Saturday, September 23 – Sleep and Disney

As it is now in my life, sleep is just a brief passing during the night. I fall asleep but then awake between 1:30 and 2:00 a.m., fall asleep sometime after four a.m., and wake again before dawn. Rather than toss and turn and possibly ruin my husband’s sleep, I get up and gather myself to face my family, albeit over the phone.

Since Mom lives the furthest and is three hours ahead, and it is just after 6 a.m., I call her first. I thought for sure she would answer, so I left her a voice mail. Now what? Then, my phone buzzes; she is returning my call.

We discuss The Lump, how I am coping, my doctors, and all that. My husband, how is he? The kids, does the oldest know? She has to ask this as our oldest is not speaking with us. He has deemed us the root of all evil in his life or something to that effect. He is lost and hurt and lashing out. Something he should have done in his 20’s but waited until his 30’s to start. My mother thinks this is something we should fix, or at least she used to tell me we had to fix this; we’re the adults. I think she now realizes, we cannot fix this, this is something our adult son needs to come to terms with in his own life. No parent is perfect. We all make mistakes. Some are bigger than others, and kids don’t come with an owner’s manual.

We all go into parenthood determined not to be like our parents or not to make the mistakes our parents made. However, I quickly learned that we make our own. Nothing prepares you for all the things your children will do, the mistakes they will make, and how you will react. Nothing prepares you for the fear that comes up when your child walks to school on their own for the first time or goes off on their bicycle beyond your vision, and so many other instances where your brain can just imagine all the bad things that can happen. It’s hard to let them go, to let them make mistakes, be hurt, learn, grow. Moreover, each one is different. Each one finds new ways to illicit that fear response, to push your buttons, and to bring on the anger and frustration.

As our children grew up, we told them we were not perfect. We apologized for the times we reacted instead of acted, for the times we were wrong. We told them that as parents, it was our job to find new ways to emotionally traumatize them from how our parents emotionally traumatized us. It would be their jobs as adults to get off the cross, build a bridge, and get over it.

The oldest has been hurt by so many little traumas in his life. Some were caused by me specifically, some by us, his stepfather and I; we were just trying to do our best with what we had. In addition, his biological father has contributed to those hurts too. His siblings do not understand how he can lash out at us in this way to turn his back on his family and walk away. I understand he’s taking out his hurts on those he knows in the deepest recesses of his heart, who will still love him when he learns how to deal with his traumas and starts to heal.

So, yes, I have told the oldest what has been happening. I do have a way to communicate with him if necessary. I cannot make him respond, though. His responses to date have been almost nothing. Just an acknowledgment that he has seen my communication. My mother is angry with him for this. She wants to call him and give him a “talking to. ” I ask her not to do that. She is his grandmother. Her job is just to love him unconditionally, no matter what difficulties there are between us. She asks me if I am mad at him for such callous behavior. I tell her, no; I am not mad at him. I hurt for him. This is not something I can fix for him, and I know as much as he says his life is good and he is happy with those he has chosen to surround himself with, I know he is masking the pains that he doesn’t want to face. Until he does, this cannot be fixed. And he will continue to hurt and continue to be alone among all his friends and lovers.

We move on, talk about other realities, and after a while, we say our goodbyes.

I text my cousin, she is more than my cousin, she is my sister. Having grown up in a house with four brothers, having my cousin as my “sister” was nice. I know she and her husband are spending a weekend away, and they are busy doing their fun things without their kids. I tell her to call me when she has the chance, I am ready to talk.

My husband is now up, so I should finish getting ready for my day. I need to run some errands, shop, and go to the bank, and take a nap. Our plan is to go to Disneyland to see the Halloween decorations and possibly watch the fireworks.

Before I leave, I call my dad. They are at the club, getting their exercise, and they will call me back later.

While running the errands, my parents call. We discuss what has been diagnosed and then my dad tells me his sister, my aunt, when he was telling her, that she said it sounds just like what she had almost 10 years ago. She just told him about it! Wow, I am totally blown away. I cannot imagine not telling my siblings about a cancer diagnosis, going through with chemo, surgery, and everything, and not even telling them. Well, now I need to go back and update all my medical histories. Good to know.

I finished shopping, got home, put it all away, and laid down for a nap before we headed to the park. My husband decided I needed sleep, so he didn’t wake me when the time approached for our intended departure. I slept until almost 5 pm. We went anyway. As we approached the parking structure on Disneyland Drive, it was blocked by cones and a police car. Traffic was horrid; everyone was being redirected to downtown Disney parking. We looked at each other and decided we didn’t want to deal with that traffic, nor the crowds, if it was that crowded in the parks. My husband asked me if I wanted to do something else, of course! We’re in the area; let’s go eat dinner at our favorite restaurant.

Away we went. About 20 minutes later, we arrived only to find my boss and his family already seated and having dinner, too. Then we ended up being seated next to them. Good taste! We discussed The Lump and the numerous possibilities that loom ahead of us. He reminded me that I still need to write a bucket list.

We go home afterward, and I feed the stray cat that adopted us years ago. He doesn’t really come into the house, but the backyard is all his. I call him the Toothless Wonder Cat. He’s lost all his teeth but still catches the occasional rodent and leaves it as a present for us.

We have a recliner in the back, and that is where the cat prefers to eat, on the recliner and then in our laps. I fell asleep out there. Thankfully, my husband woke us up so I could go to bed. Maybe I will sleep the whole night again.

Life is craving sleep

Friday, September 22 – Cancer Support Community

We go to the Cancer Support Community, as Evelyn directed, as Robert insisted. He has to go with me. I cannot do this alone. We meet with several interns there who provide us with a brief tour before we are taken to a room to learn about the center, how they are funded, what services they provide, and for them to learn about us. I feel small. I feel insignificant. I feel lost. I can do this. I feel lost…

There are three of us with cancer: a gentleman with bladder cancer and only one kidney, and his wife, who I can tell is desperate to have something to cling to. A young woman who almost died of Leukemia is waiting for a bone marrow match. And me, the one with the aggressive, triple-negative breast cancer.

There is another person in our “Welcome” group; her brother is dying, and she is distraught. Her parents died when she was 7; I gather her brother raised her. And my husband. My black and white, sarcastic, dry-witted, loving husband. The man who thought at a way too early age that he would not live past 50 had a bucket list by age 10 and started working on it by 20. This deep-hearted, compassionate man who hates drama hates dramatic, over-emotional upheavals. Who thinks he cannot benefit from being in a group all sitting around feeling sorry for themselves rather than taking some sort of positive action? I sit next to this man and realize he needs this as much as I do. We must get through this together and with as much help as possible.

As we’re all being handed the paperwork necessary to fill out to continue with placement in a support group, I tell him if I have to join a support group, he does as well. There are three support groups offered, three nights a week. One for spouses/companions, one for newly diagnosed breast cancer patients, and one for other cancer patients. We pick Tuesday nights. We will start next Tuesday. We are shown more of the facility. I am trying to remain calm, to keep the fear-laced anxiety contained. It bubbles up and threatens to consume me. With all my willpower, I push it back yet again. I can do this. I have so many in my life I can call on for support. Oh my God, how is this happening to me….

I have to talk to my family about this. They have been so patient about this. I still have not processed this, this lump, this process; why am I struggling so much? I am still so lost, small, and frightened, and The Lump is so big. How did I miss it for so long? What is WRONG with me? I can do this. I can beat this; who cares if I have no boobs? Who cares if I have fake ones? Will I care? I have fucking CANCER! Breathe… I feel like I’m constantly on the verge of tears.

We finish up at the Cancer Support Community, and because it’s National Ice Cream Cone Day, stop for an Ice Cream Cone. I go back to work. I should be exhausted. Sleep is still not coming to me. Will I still be able to be attractive when this is over?

My husband purchased Pink Die-Cut tape-backed letters and stuck them on the bathroom mirror: Treatable, Curable, Survivable, Temporary. I love him.

Life is big and scary.

Wednesday, September 20 – Symposium…

I didn’t really sleep. I fell asleep last night, but I was awake again at 2 am. I fell back to sleep after 5 am, and I woke up before 6 am. This is now my thing. I get ready, I have the Symposium today. How do I act normal? My world is upside down. How do I do this? My dragon is active, squeezing my heart here, punching my lungs there, kick to the gut, a whoosh through my head, remember to breathe girl, breathe.

I leave for the Symposium like it’s any other day. A normal day. You can do this; it’s just another day of the week. You were looking forward to this. You can do this. I arrive at the location where the symposium is being held. Lots of people I know and recognize, people I don’t know. I should sit near an end where I can excuse myself if necessary. Evelyn will be calling with MRI and HER2 results. She may be able to get me in for Genetic Testing…

Act normal, smile, fake it. Ten minutes before the opening remarks, my phone rings. Evelyn. MRI is clean. No other lesions or lymph node involvement were spotted. It’s a relief. Exhale some of that pent-up anxiety. HER2 is negative as well. We’re confirming this is a triple-negative cancer. And that little bit of anxiety just released is back. Triple Negative sounds bad. My husband begged me not to Google anything about cancer. I will not go down that rabbit hole.

I can do this today. Immerse myself in the day. I signed up for this so I could learn more about this system. I can do this. I run into Rita. I worked for her a long time ago. During a break, it comes out. I tell her I was just diagnosed yesterday. She had breast cancer. Different. Slow growing, lumpectomy, radiation. She will help me. It helps knowing I have someone on my side. I have her number. I will call her. I make it through the day. I run into a few others. I told an old colleague who was there as well. I leave as soon as I feel it is appropriate.

Home. I’m trying to be normal about this. My world is no longer normal. I email the family with the news of the MRI. Small steps. We can do this. We. We. Me… Husband insisted I had to join a support group. Arrangements are made to be at the Friday morning welcome meeting so we can start that immediately as well. How do I not have questions? I do have questions about chemo; I know the basics. How sick is this really going to make me? Google that. I can Google that. It’s not answering my questions. Maybe I need to be more specific on my cancer so I can get specific answers on the chemo. Google: Triple Negative Cancer Chemo. First sentence up: Triple Negative cancers have the lowest 5-year survival rate… OMG, close, close, close! Google is not my friend! Stop trying to figure out what will happen with chemo. My anxiety now contains some tendrils of fear, orange, and red, mixed in with the gray. It is a hard ball in the center of the anxiety, making it heavy and nauseous. I should catch up on work. Work takes me away, do not think about that C word. Don’t think about Triple Negative. Don’t think about any of it. Ignore the ball in my gut.

What if I must have a mastectomy? Do I want reconstruction? Do I have to know this now? What if I need a bilateral mastectomy? Will they feel fake? Will they feel at all? My husband says he will love me no matter what. He doesn’t love me for my boobs. He doesn’t care if I have them or not. But I think he might. Do I want new boobs if I must remove my real ones? One, maybe the other, is trying to kill me. Why? I should eat. I can’t eat. Maybe I’ll sleep tonight. Do I want new boobs? Do I want a prophylactic bilateral mastectomy? I don’t know what I want… my heart aches. Will I still be me? I know I am not my boobs, but I just don’t know how I feel about losing them or replacing them…

Life is broken.

September 18 Monday… D Day?

My alarm goes off at 6:20 am. I think I should feel exhausted. I have not slept a full night since last Thursday when that word was said that feeds the anxiety still curled in my gut, waiting for me to let it loose. It’s getting harder to control. I was awake for several hours in the middle of the night, falling back to sleep sometime after 4 am. I was awake before my alarm went off at 6:20 am. I lay there ignoring the alarm and check The Lump. FUCK! It’s still there. Damn it. I get up and get ready for work, packing my lunch. I have an industry Expo in town that I need to get to try to do some networking. We need more business. But I want to get to the office first and catch up on all I missed on Thursday and Friday.

I am trying not to think about The Call. The call that will schedule us to come back for the results. The call that will change the rest of my life. The anxiety pushes from its little corner; I push back. My boob already hurts. I can now take more than Tylenol. Advil is my next choice. I can take 3 extra strength Advil, which will get me through the day. I work, get through emails, answer questions, help with billing issues, and check all pending to make sure everything looks right and there are no anomalies.

Boss arrives, we talk, review some things, asked when I’m going to the EXPO. I told him I would finish up some rate requests, review some things, eat my lunch, and head over there. Asked about The Call. Not yet, as I shake my head, my cell phone rings. Not a number I recognize, but it originated in the city of the Breast Diagnostic Center. I hold up my finger to pause my boss for a second and answer. It’s Evelyn from the BDC. They will not receive the biopsy results in time to schedule a follow-up that day, but they will be in for a first-thing appointment on Tuesday. “9 am, yes, that works, we will be there.” Show the pink slip or tell the front desk you are there to see Evelyn. They will take it from there. The anxiety perks up, and it starts to unfurl, ready to go, but I am not ready for that yet. I close my eyes, take a deep cleansing breath, and imagine good, purifying energies coming in, goldish, with a tinge of pink, entering my lungs, spreading through my bloodstream, fortifying my body, adding invisible armor, my protection from bad, and slowly exhaling. My boss watches all this, and as I turn back to him, he says, “Tomorrow”, and I nod. “OK. Let me know how it goes.”

“I will.”

“Will you go back to the EXPO tomorrow?”

“Depends on what I find there today.”

“OK. Then Wednesday, you have the all-day Symposium on the Software we use, correct?”

“Yes, I still plan on going to that. I think there are tools we’re not using effectively. This is a free way to find out what I am missing.”

“Good, we will see you back here for sure on Thursday.”

“Yup.” And with that, I went back to work.

I like my boss. I really like my boss. I love what I do. There are times when I don’t like my boss. We have different management styles, and he can be overbearing at times. He is quick to anger and VENTS. But he is also quick to calm down. When he is frustrated or angry, he will not listen. There is no talking to him. You cannot explain anything. You just take the wrath, do what you can to fix the situation that started his frustration, and then present the solution you wanted to present earlier after everything is fixed.

He frustrates me to no end at times. He makes me stretch and grow and learn new things, even when I don’t want to. He is fair. He believes that in a good days pay for hard work. He expects hard work. He is so much like my husband. Cut and dry. A wry sense of humor. He’s a boob man. I know this; he knows this. He says things he shouldn’t say, but they are the same things I think or would say. HR rolls her eyes at us all the time. It feels like we are compatriots fighting the same fight.

He makes me laugh almost as much as my husband. I respect him. When he mentions my boobs about whatever we may be dealing with, it is usually funny, makes me laugh, and then I tell him I own his ass. He laughs and agrees. As angry as he can make me, and I am sure as hell, I can press all his buttons and piss him off, too, I don’t think I would find a better place to work than where I am now.

I was very happy for almost 20 years to work for a major corporation. Then they moved all the jobs I liked to Arizona. And not to a nice place like Prescott or Flagstaff. I couldn’t do it. I could not move with the jobs. So, after almost 20 years with this company, I took the layoff. Sometimes I think of my boss as almost a second father. He is a good man.

Anyway, it took me a little longer than I anticipated to go over everything, get emails caught up, and answer all the questions. I went and retrieved my salad from the frig and ate at my desk as I put finishing touches on things, then packed all my gear up and headed to the EXPO. I walk in, and of course, I see people I know everywhere. I’ve been in this industry for so long, and I happen to be the current president of one of the non-profit organizations in our industry, so I have had the great opportunity to meet many wonderful people.

I greet those I know, we chat, promise to call and get together, the normal stuff. Then I will move on to see if there are any opportunities to grow our business here. I stop at various booths, introduce myself, chat, swap stories, trade business cards, get goodies, the little marketing gimmicks everyone buys to hand out at EXPOs. As I turn a corner and come to one booth, I recognize an old colleague. The previous corporation I worked for has gone through many changes, including a purchase by another company. Many of my previous co-workers throughout the country have left and gone on to other adventures. The previous COO and the President of the Americas have started a new company based in Arizona with the primary footprint of the services and goods they offer in my neck of the woods. As they have been expanding their footprint and providing offerings in other markets, they keep hiring more and more people to help them. One of my previous bosses, who I loved working for, also works for this new company. Here was yet another face from my past, becoming my present once again. It was good to see him.

Once I was done grooming the EXPO, with very little to show for my efforts, but it was nice to have been able to get out there and talk to people I don’t get the chance to speak with very often, I called it a day and headed home. Home, where we were still in denial about the word that had been spoken that directly relates to the C word. I was barely in the car before I unhooked my bra. I am still uncomfortable wearing it. Thank God for Advil. Any maybe tonight I will drink the rest of the bubbly I opened last Tuesday. Maybe this will help me sleep through the night.

We watch TV, I go through email again, and I drink the last of the champagne. The anxiety is getting hard. It has been this soft ethereal thing curled into a corner of my gut this whole week. Now, it’s becoming hard, edgy, cutting, and heavy. How am I ever going to sleep tonight? I didn’t tell my husband that my primary care physician left me a voicemail earlier when my phone was snugged away in my purse. She’s received information from the BDC about the biopsy, if there is anything she can do, I am to call her. I am afraid to call her; I don’t want to know what she knows.

Life is denial for now

September 17 – Sunday, Tick Tock, Tick Tock

Sunday… the kids will be coming over in the afternoon for dinner. For the first time ever I requested we watch the EMMY Awards. I limit my award watching to the OSCAR’s. But Stephen Colbert is hosting this year, and I really wanted to see what he does.

We had the normal banter going back and forth, we ordered Pizza for dinner so I would not cook. I didn’t wear any type of bra, just a couple of knit tanks under my shirt. The Lump, it’s still there. The Lump is still hard and swollen. My bruising is turning pretty colors. The Lump is still angry. The Lump is still there, damn it. I keep checking, feeling The Lump. This is unreal. This is a dream. I will wake up and this will all go away. Life will be good again.

Friday September 15 – more of the same

Friday is much the same but with no ice. I am stiff and sore. The Lump is near the chest wall on the bottom side of my breast. Very close to the chest muscle. Moving my right arm irritates the soreness. I wore a regular bra, and we took our time getting ready for dinner with the family. The underwire of my bra quickly irritated The Lump. It was a good night for dinner with my parents and other family. We skirted the issue of The Lump and why my right boob hurt. We laughed, shared stories, and ignored the giant lump in the room as much as possible.

Because of The Lump, we decided to limit our activities at Disneyland parks on Saturday and told the family we would meet up with them later in the day to still spend time with them before our dinner reservation.

I was in serious pain by the time we got home. My bra caused most of the irritation and pain. The Lump was now angry – hard and swollen. That curl of anxiety perked its head, but I tamped it back down. Not yet. Life was going to be good for at least another day. But I will get a new sports bra tomorrow, so I won’t have to fight with the underwire anymore.

Life is ignoring the The Lump in the room