Triple Negative Breast Cancer – Page 3

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

Friday September 29 – Chemo School

Today was Chemo School. I had picked up the prescriptions that Dr. Sikaria’s office told me would be called in and that I would need to pick them up prior to “school.” We headed over with my new chemo meds and went to learn.

When we first arrived, they advised us that the approval for the genetic test had come through and that they could draw the blood for that. I had some forms to sign, and they had to go over some of the information about the test.

I signed the forms while the nurse got everything ready to draw my blood.

I told her there was a skin tag on the right arm at my elbow. That marks the spot where the blood comes out. She tied the tourniquet, gave me the rubber ball to squeeze, and started feeling around. I told her, “I promise,” use a butterfly needle and go straight up under the skin tag. Blood will come out. She felt some more, and I told her you will not feel it. Trust me, and go for it. She did, and her little squeal of delight when she got blood told me she didn’t believe me. I teased her – you didn’t believe me! She said she was really worried because she couldn’t feel it and was afraid she would have to stick me a second time.

After that, we were taken back to an exam room to meet with the Nurse Practitioner and learn about chemo.

She went over our insurance and co-pays first. There is no copay for chemo, but there will be co-pays for doctor visits and when we meet with the Nurse Practitioner.

When I come in for my first chemo appointment on 10/10, that is day 1 of cycle 1. It will take about three hours to complete the infusion. They will start with anti-nausea drugs, then the chemo drugs. When I am done, they will apply a Neulasta disc. It’s battery-operated and will administer the Neulasta automatically at the proper time. It will have a light on it when it turns red or off or something like that; after 27 hours, I can remove the disc. It will make a noise when it’s ready to administer the drug.

One of my chemo drugs will turn my urine pink to reddish color. The other one will irritate my bladder, so I have to drink a minimum of 2-3 quarts of fluid every day and make sure I drink enough to make me urinate twice every night so my bladder doesn’t go too long without emptying the first 2 to 3 days of the cycle.

She did ask me about motion sickness, and when we told her I am prone to motion sickness in the car (generally not in planes, trains, or boats, though), she changed the anti-nausea drugs that would be administered. She had already had Compezine called into our pharmacy, but she told me not to pick that one up. She will have a different drug called in for me to pick up and take on days 1-4 at bedtime.

I am to take Decadron days 2 through 4, day and night, and Zofran every 8 hours as needed, days 2 through 4.

I am also to take Claritin on day 2 to help prevent the bone pain that can be caused by the Neulasta.

My hair will fall out around 2 to 3 weeks after day 1 of the first cycle.

We already have an Rx for Cipro in case I spike a fever. If my temperature is over 100.4, I am to take the Cipro, and we are to call in and report the fever.

If I develop mouth sores, we are to call in.

If the nausea is not controlled, we are to call in.

If we have any questions, we call in.

This is only for phase one of chemo. We have to do this again for phase two…

I have a standing order for a CBC (Complete Blood Count) two business days before the start of the next cycle.

Life is expanding our medical education

Thursday September 28 – Last appointments scheduled

Dr. Sikaria had said I needed an echo-cardiogram as well as a port placed before chemo started, and we needed to be scheduled for chemo school. Of course, both of these items need pre-approval from the insurance company. Pre-approvals went very fast; today, we finalized these last two appointments. I also had read I should get a dental check-up and cleaning before starting chemo, and if I needed my annual well check, I need to get that done before chemo as well, as that will be thrown off by the chemo.

Echo and my annual exam are scheduled for next Tuesday, The emergency dental appointment was completed yesterday (I received a clean bill of health along with some high-fluoride toothpaste to use during chemo to help prevent erosion), and the port placement is planned for Thursday, October 5th. They are squeezing me in as Friday was already fully planned, and we would be out of town on Saturday.

When I heard about the washing restrictions for the port, starting with the first three days—no showering—followed by a week when you can get it wet, but not directly, and it needs to be kept as dry as possible. After two more weeks of no direct water on the incision site and me with my normally worn curly hair, I was wondering how in the heck I was going to manage this. That was when I decided I needed to cut it off now.

I have always been whimsical about my hair. This would be why it now sported blue, green, hot pink, and purple colors in the underlayers. I have always admired those women who shaved their heads, and I figured once my hair was mostly silver/white, I would join a Saint Baldrick’s Head Shave fundraiser and shave it all off to start over and embrace the white. My husband was never very keen on that idea, but I always kept this in my mind.

So I called my stylist, and they agreed to cut my hair – very short, on Saturday. Below are before pictures….

Life is “hacking” of my hair

Tuesday 9/26 Text Message exchange with a cousin

Hi! I heard about your news. I’m so sorry. I’m curious, since I help diagnose breast CA, what exactly was the diagnosis and stage? All my best and keeping up the positive vibes for you! (two kissy faces)

Thanks! Here is all the dirty details sent to my family a week ago:

As I am sure all of you have discussed, I found a lump in my right breast right before Labor Day weekend. I already had a follow up doctor appointment scheduled for the Tuesday after, so didn’t rush to make another appointment.

I’ve had clean mammograms for years with the last one being this past January.

Tuesday, September 5^th, I told my primary care doctor about said lump. She felt it out, we both agreed it was most likely a cyst, and she scheduled me for a diagnostic mammogram and ultrasound on Tuesday Sept 12^th.

That lead to being scheduled immediately for a biopsy, that happened on Thursday September 14^th.

Today was results day.

The lump is 29 x 22x 17 mm, and located on the anterior side of my breast 8 cm from the nipple.

It is an invasive ductal carcinoma, grade III

It is hormonal receptive negative and the Ki-7 indicator is 80%, which means it is a very aggressive tumor, and there is not the additional plus of being able to cut off hormone supply to help stop the cancer.

It is early stage, 1 or 2.

The mammogram and ultrasound did not detect any additional sites or enlarged lymph glands.

I have already been scheduled for an MRI today to insure no other lesions or lymph gland involvement before my first appointment with an Oncologist.

They are also trying to get me scheduled for genetic testing this week, but think it may not happen until next week when I meet with the Oncologist I have been referred too in my network.

The consulting oncologist we met with this morning advised if I was her patient, she would recommend chemo first, as this type of cancer responds well to chemo, shrink the tumor then have a lumpectomy.

If my genetic testing comes back positive for any one of 7 variants for breast cancer, that would change from her original recommendation to double mastectomy to prevent further occurrences.

I will be losing my hair, I may need radiation treatment, but that is still to be determined by the next scans and the genetic testing results.

I have a great medical team that is at my beck and call should I need them, even if it is only to help me with the doctors that are covered in my medical group or answer our questions.

I have been referred to support groups here as well.

The consulting oncologist and my cancer coordinator both emphasized this is very treatable, curable and temporary.

I am in good hands, and this is being fast tracked as much as possible so they can get a treatment plan in place sooner rather than later.

This is all the information I have right now. I am not ready to talk about this, and still have to go back to the imaging center for the MRI. As soon as I know more I will update you all.

Please do not call me today or tomorrow. I have much reading to do, and I have a full day symposium already scheduled for tomorrow that I really need to attend for work.

This weekend I will make time for phone calls. I love you all, I thank you all for your understanding and support.

Thanks for the information! (Kissy face)

I work in our breast center and perform the ultrasounds to help detect these types of cancers in their early stages (God willing) and assist the doctors to mark the area prior to chemo treatment and sometimes even post chemo.

Historically we’ve seen such a positive response to the more aggressive chemo – the neo adjuvant. It’s amazing and I’m sure your oncology team have a wonderful plan set up for you. You answered all the potential questions I was going to ask!

I’m praying the genetic testing is negative. Do what feels appropriate in regards to double mastectomy. i know it’s a tough decision yet it can be an easy one depending.

All my love and feel free to text anytime!

Met with the Oncologist yesterday:

Today was the first oncologist appointment (getting to know you, getting to know all about you….)

My Care coordinator picked a good match. We both like her.

Her assessment of the treatment plan matched the consulting Oncologist recommendations and reasons why

Ready, set, here we go…. (First star to the right and strait on till morning!)

My Oncologists name is Swati Sikaria. She is a Hematology & Medical Oncology Specialist. She is taking a very hands on approach to my treatment, and not only will I be going to the same office for all my treatments, but she has me coming back in for a physical check up every few weeks in between… (that is a whole lot of driving to Redondo Beach).

She is placing me in early Stage IIA for my cancer, only reason for Stage II – size.

She is starting me on chemo first, then we move to lumpectomy (or bye bye babies if genetic test results come back with bad news). We will go from there for next steps.

Chemo cocktails (Dr. Sikaria already confirmed, these are not the fun 5 0’clock cocktails) will be done in two parts.

Part 1:

Adriamycin & Cyclophosphamide every 2 weeks for 4 rounds (total of 8 weeks)

She said this will most likely kick my ass for about 4 to 5 days, then I will start to feel better. There is the possibility to work part time during this cycle, but in speaking with Kim who handles all the disability stuff, variable leave was sounding complicated. My company is willing to work with me on this. Tomorrow we will sit down and put together a tentative plan and go from there once this actually starts and we see how I react.

Part 2:

Taxol & Carboplatin (which is a new drug in the chemo arsenal and she is willing to fight the HMO if they don’t approve it. Really tough on triple negative cancers like mine.) This will be administered weekly for 12 weeks. Adding the Carboplatin will kick my butt day 1, and maybe day 2, but I will recover quickly and I can work from home, but cannot go into office when I do this.

This all starts Tuesday 10/10 at 9am sharp.

But wait, there’s more… (and you don’t even have to cover shipping and handling charges)

We get to have Chemo Training…. (they teach me the best way to puke and Robert the best way to hold the bucket?) That is this Friday at 1pm.

I am being scheduled for a port – yeah, another battle scar! (and less needle holes!)

I am being scheduled for the Genetic Testing (as hinted at above) – has to be approved by the Insurance company, if that fails we will be doing this anyway and paying for it out of our own pocket. It’s important. It will be a full genetic mark up, not just the breast cancer genes.

I will be given a self-injectable of Nulasta to take after every chemo session to keep me healthy during all these designer drugs I’ll be doing meant to kill me, oh, wait, I mean the cancer.

And the bad news – genetic testing results take about 3 weeks… If I come back positive for any cancer indicators all three kids will then need to be tested as well.

That is all the new news for today. You can all go back to your regularly scheduled programming.

I can add you to my emails I’ve been sending out. Christmas Eve theme is PINK! 🙂

Thank you!

No problem. Writing this all out for he family actually helps me understand, helps me remember all the stuff they keep throwing at me, and gives me something to do. One of my nephews reached out to me this morning wanting to be added to the emails too.

Over the years I’ve heard consistently, the more successful healing for patients with a large support group. I’m not surprised you have many people behind you!

I don’t Facebook, so the emails are greatly appreciated!

I’m glad your doing the genetic testing as this now changes history for your daughter. she can start her mammo screenings at 40 as opposed to 50.

Good. I started at 35 because of the thyroid cancer.

you never have a family history before correct?

I see more and more patients who are diagnosed with No family Hx. And Getting younger and younger at diagnosis. Youngest I’ve been involved with was 21!

And by the way your writing is hilarious with injections of song references (laughing crying face)

Nope. Although my aunt (dad’s sister) when he was talking to her last Friday, told him my diagnosis sounded like exactly what she went through almost 10 years ago. She did chemo, lumpectomy that turned into mastectomy because her lymph nodes tested positive during surgery and then radiation. She’s been fine since.

Gotta keep the humor man!

They’ll likely do a sentinal node testing prior to surgery for node involvement.

Yes, in my briefcase full of information we received at diagnosis, I was advised they would do the SN mapping.

Now I just have to decide if that happens or the genetic test comes back hinky, do I want new boobs or not. One of my originals is trying to kill me… (dead face)

I’d go with double mast. likely of contralateral side getting CA is high. Again, only based on the results of the testing.

Of course

Left side is more commonly diagnosed initially. We’ve seen cases after double mastectomy, where CA was found in one breast via imaging or palpable, and path found CA in the other breast as well! Crazy

OK now you’re just scaring me. (Scared face) Having a hard enough time trying to figure out my relationship with my boobs and The Lump and whether I want reconstruction if it comes to bilateral mastectomy. Don’t tell me about the bought boobs going rogue too!

Of course I have to be different than the norm…. phhhbtt. Left Boob. why would the slightly bigger boob go rogue so a lumpectomy wouldn’t be such a drastic change between the two. That would make too much sense (eye rolling face)

OMG I AM So SORRY!! The bought boobs won’t go rogue! I haven’t heard that happen! Nooooo!

Oh, ok. Totally misunderstood that then.

This is PRIOR to reconstruction. My BAD I shouldn’tve said aww man (sad face, zip lip face – 4 times)

It’s ok, I make this kind of mistake all the time.

no its just the volume we see. Either way I’m so sorry to cause more distress but I’m hearing you and your boobs be it bought or original packing, will be well looked after

Thank you. No worries, it was only a mild flop of the tummy. (sick face) really! (Now I get to tease you unmercifully! (Joking face)

Yes Yes you do !!! Even as I bring you Middleton (Angle Face and kissy face)

….

you’re more than blessed

Yup! I have angels watching over me. they keep leaving their feathers behind. Found this one on the backseat of my car today.

Life is finding the humour in a deadly situation

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.

Monday September 25 – Oncologist

Today was the first oncologist appointment (getting to know you, getting to know all about you….)

My Care coordinator picked a good match. We both like her.
Her assessment of the treatment plan matched the consulting Oncologist’s recommendations and reasons why
Ready, set, here we go…. (First star to the right and straight on till morning!)

My Oncologist’s name is Swati Sikaria. She is a Hematology and Medical Oncology Specialist. She is taking a very hands-on approach to my treatment. Not only will I be going to the same office for all my treatments, but she has me coming back in for a physical checkup every few weeks in between… (That is a whole lot of driving to the other side of the hill.)

She is placing me in early Stage IIA for my cancer, the main reason for Stage II – size.

She is starting me on chemo first; then we move to lumpectomy (or bye-bye babies if genetic test results come back with bad news). We will go from there for the next steps.

Chemo cocktails (Dr. Sikaria already confirmed; these are not the fun 5 o’clock cocktails) will be done in two parts.

Part 1:

Adriamycin & Cyclophosphamide every 2 weeks for 4 cycles (total of 8 weeks)

She said this will most likely kick my ass for about 4 to 5 days, then I will start to feel better. There is the possibility of working part-time during this cycle, but in speaking with the patient advocate who handles all the disability stuff, variable leave sounded complicated. My company is willing to work with me on this. Tomorrow, we will sit down and put together a tentative plan and go from there once this actually starts, and we see how I react.

Part 2:

Taxol & Carboplatin (which is a new drug in the chemo arsenal, and she is willing to fight the HMO if they don’t approve it. It is tough on triple negative cancers like mine.) This will be administered weekly for 12 weeks. Adding the Carboplatin will kick my butt on day 1 and maybe day 2, but I will recover quickly, and I can work from home, but I cannot go into the office when I do this.

This all starts Tuesday, 10/10, at 9am sharp.

But wait, there’s more… (and you don’t even have to cover shipping and handling charges)

We get to have Chemo Training…. (they teach me the best way to puke and Robert the best way to hold the bucket?) That is this Friday at 1 pm.
I am being scheduled for a port—yeah, another battle scar! (And fewer needle holes!)
I am being scheduled for Genetic Testing (as hinted above) – it has to be approved by the Insurance company; if that fails, we will be doing this anyway and paying for it out of our own pocket. It’s important. It will be a full genetic markup, not just the breast cancer genes.
I will be given a self-injectable of Nulasta to take after every chemo session to keep me healthy during all these designer drugs I’ll be doing meant to kill me, oh, wait, I mean the cancer.
And the bad news – genetic testing results take about three weeks… If I come back positive for any cancer indicators, all three kids will then need to be tested as well.

That is all the new news for today. You can all go back to your regularly scheduled programming.

Life is preparing for battle

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.

Tuesday September 19 – Result Day

This morning finds me wide awake before the alarm goes off. How long can I keep this up? I feel wooden. I am terrified. Why am I so afraid? It’s the unknown, yet known. I’m afraid because deep down, I know what it is; I just don’t want to acknowledge what it is. My hand creeps slowly up from my side, and I feel my right breast. Damn, The Lump is still there. The steri-tapes I was told to keep on for 5 days are really starting to make me itch. It’s close enough to five days, so I can remove them before we go. The anxiety is heavier this morning, and it has spread. It’s now in my lungs and around my heart. It’s up in my throat. I take my morning pills, but I don’t eat. I can’t. The anxiety is a dragon unfurling slowly in my body, cutting off my ability to swallow, to talk. There are moments when I feel like I cannot breathe.

My husband takes my hand. It will be OK. The dragon recedes just a bit. I can breathe again. We get in the car. We drive back to the BDC. I walk up to the front desk to check-in. I have my pink slip; they look up at me. “Oh, OK, we will take that. We will be right with you.” The first Oh, is filled with dread. Then the voice turns perky. My dragon tightens. I sit with my husband and hang on for dear life.

Evelyn, a cute petite brunette with kind eyes and a beautiful smile, calls us and brings us back to an office, where we are directed to sit at a desk. Evelyn is calming; she speaks softly. She says Dr. R will be in shortly to discuss my diagnosis with us.

Dr. R comes in and introduces herself. I know this is going to be bad. I get out my notebook from my purse. I am a visual, kinetic learner, so if I want something to sink in, even doodling will help me if I am seeing or reading something I need to understand. Keywords and doodles help me commit it to memory if someone is speaking. Dr. R said I get copies of all the pathology reports. She’s going to explain what it all means and provide us with a recommendation on treatment.

She went through the pathology report from top to bottom. As my heart constricted, my ears buzzed, and my stomach flipped. My anchor was holding my hand, and my dragon was flipping inside my torso.

I have invasive ductal carcinoma. It’s considered triple negative at this point, but they do not have final confirmation. This means the current biopsy information provided shows this cancer is not receptive to Estrogen or Progesterone. We ask what this means. It means we cannot add hormone therapy to cut off the hormone supply to the tumor to weaken it. They are waiting on the results for HER2 cells. These are cells that, if present, are telling the tumor cells to multiply at an accelerated rate. If this is negative, this means they cannot add an additional medication to chemo that will specifically target the HER2 cells to slow down its growth. My mind translates HER2 cells to God Cells – go forth and multiply.

This is an aggressive tumor. My Ki-67 came out at 80%.

Dr. R said if she were my oncologist, she would recommend Chemotherapy to shrink the tumor, lumpectomy, and then radiation.

She asked about family history, and when our response was negative and she learned of my previous bout with Thyroid cancer, she said we should insist on genetic testing for any of the 7 variants that indicate a risk for breast cancer. Even if we have to pay for this ourselves, as the insurance may not want to cover the cost since I am over 50, get it done. If I have one of those variants, she would change the treatment recommendation to bilateral mastectomy.

She emphasized that even though people say a triple negative cancer is bad, don’t think about that. Think about the part that this type of cancer is very receptive to chemo. This is treatable, this is curable, this is survivable, and this is temporary.

She said I would lose my hair, get a wig, or do whatever I needed to do to feel pretty and keep up my confidence during treatment. I asked about working through this. She didn’t say no, but she seriously did not think it wise and told me I should really use this time to take care of myself. If I wanted to try to work, there are a few who feel well enough to do this, but most do not.

She told my husband that his job was not to always tell me I must have a positive outlook every day. She told him there would be days when she would just need to let everything out, and that was OK. No one can always remain positive every day during this treatment. She has to have the ability to let her feelings out, and you need to be the safe place for her to do that. It doesn’t mean she is losing hope. She just needs to vent.

My anchor, my rock, looked shell-shocked, but he heard Dr. R. He committed to her to let me use him to vent on my down days in this process, and he would understand that I was not giving up.

She asked if we had any questions. I am numb, I am petrified, how, what, how? Why? That dragon of anxiety, the curling gray fog, has engulfed my whole body. My ears are working, but everything thing seems muffled. We shake our heads, no, no more questions. Wait, my husband has a question. I hear it, but I don’t hear it. He is trying to emphasize that I will live. I have cancer. I have a bad cancer. I have a cancer that will require chemo, and surgery and radiation, and reconstruction, and, and, and… I will live. Dr. R explained that Evelyn would return to review more things with us.

Evelyn comes back in, she explains the diagnosis briefly, yes, we understand. Dr. R and none of the oncologists who work at the BDC are part of our HMO, but there is a group under our HMO that works directly with the BDC and the oncologists there. Based on my diagnosis, she has picked one who she feels will be a great match for us, and I have scheduled an appointment with her the next Monday. Now, for a Surgeon, she checked with my primary care physician, was directed to the preferred surgical group, and matched me with who she felt was the best doctor there for my case, and that appointment has been scheduled as well. She has also scheduled me for an MRI in a few hours at the BDC. If there are additional lesions or lymph nodes that show signs of involvement, then I will need to be scheduled for additional biopsy and have those completed before my first Oncology appointment.

Then she opens a 2-inch wide plastic document case and starts going over resources and places to go for research and support groups. She highly recommends the Cancer Care Center, and we really need to get to the first welcome meeting on Friday before we can be signed up for a support group. And here is information on breast cancer. This will help you find local resources for wigs, scarves, and hats; here is information on nutrition. Here is the surgical information, and Sentinel Lymph Node mapping will be done here before your surgery. Here is some information on that for you to read. Here are contact numbers, and if you want reconstruction, let me know as I will get you matched to a plastic surgeon, and here, and here, and here… I don’t know what to do, I don’t know what to say. I’m a statistic, again.

Evelyn explains she is also a breast cancer survivor. She tells us briefly about her diagnosis and her double mastectomy. Her sister too. She emphasizes that everything will be ok. My heart aches; it will never be the same again. My right boob is defective. It’s gone rogue. It’s trying to kill me. Evelyn tells me she is going to hug me now. She is tiny, but I will survive. I am terrified. I can’t believe this is happening. This is not my life. If this tiny thing can do it, so can I. I take some of her strength, I need it for the rest of the day.

We take our plastic document box with the handle, filled with way too much information to begin to digest in a few short hours and walk out of the BDC hand in hand, in shock, both of us silently trying to come to terms with what we have just been told. We have about two hours before we have to be back for the MRI. My husband asks me if I want to eat. Am I hungry? No, no, I’m not hungry. Let’s go home.

I called my boss and told him I would not be there the rest of the day. Explain my diagnosis. So many questions I don’t have answers to yet. Can he tell people if they ask? Yes, there’s no reason to hide this. It’s my boob…. We arrived home, and my family was all waiting on pins and needles. I can’t talk to them right now. I have to tell them, but I am not ready for this. I will send them all an email and then tell them they have to wait until Saturday before I can talk. I will text them all to read the email. My husband, Robert, texts two of the three kids to let them know. I copied the letter sent to my extended family and sent it to them later. I also IM the oldest son to let him know.

Letter sent to the family: “As I am sure all of you have discussed, I found a lump in my right breast right before Labor Day weekend. I already had a follow-up doctor appointment scheduled for the Tuesday after, so didn’t rush to make another appointment.

I’ve had clean mammograms for years, the last being this past January.

On Tuesday, September 5th, I told my primary care doctor about said lump. She felt it out, we both agreed it was most likely a cyst, and she scheduled me for a diagnostic mammogram and ultrasound on Tuesday, Sept 12^th.

That led to being scheduled immediately for a biopsy, which happened on Thursday, September 14th.

Today was results day.

The lump is 29 x 22 x 17 mm and is located on the anterior side of my breast 8 cm from the nipple.

It is an invasive ductal carcinoma, grade III

It is hormonal receptive negative, and the Ki-67 indicator is 80%, which means it is a very aggressive tumor, and there is not the additional plus of being able to cut off hormone supply to help stop the cancer.

It is in the early stages, 1 or 2.

The mammogram and ultrasound did not detect any additional sites or enlarged lymph glands.

I have already been scheduled for an MRI today to ensure no other lesions or lymph gland involvement before my first appointment with an Oncologist.

They are also trying to get me scheduled for genetic testing this week, but think it may not happen until next week when I meet with the Oncologist I have been referred to in my network.

The consulting oncologist we met with this morning advised if I were her patient, she would recommend chemo first, as this type of cancer responds well to chemo, shrinks the tumor, and then have a lumpectomy.

If my genetic testing comes back positive for any one of 7 variants for breast cancer, that would change from her original recommendation to double mastectomy to prevent further occurrences.

I will be losing my hair, and I may need radiation treatment, but that is still to be determined by the next scans and the genetic testing results.

I have a great medical team that is at my beck and call should I need them, even if it is only to help me with the doctors that are covered in my medical group or answer our questions.

I have been referred to support groups here as well.

The consulting oncologist and my cancer coordinator both emphasized this is very treatable, curable, and temporary.

I am in good hands, and this is being fast-tracked as much as possible so they can implement a treatment plan sooner rather than later.

This is all the information I have right now. I am not ready to talk about this, and I still have to return to the imaging center for the MRI. As soon as I know more, I will update you all.

Please do not call me today or tomorrow. I have a lot of reading to do, and I have a full-day symposium scheduled for tomorrow that I really need to attend for work.

This weekend I will make time for phone calls. I love you all, I thank you all for your understanding and support.

Love you all VERY much.”

I head to our bedroom and remove all my jewelry. MRI, no metal. I must remove the tiny stud in the second hole in my left earlobe. It’s really supposed to be a nose stud, but I love the tiny blue chip of color that barely winks from my lobe. I drop the stud. I can’t find it. Fuck my life.

Of course, my mother did not read the messages in order, so she called. I can’t answer. I can’t talk; we have to go back for the MRI. Then my mom pocket-dials me. I don’t know if this is a pocket dial, as I still cannot answer. I want to yell at her,” READ THE FUCKING EMAIL”. I want to yell at the world. I want to stop the world and get off until this whole thing is over. I want to wake up from this nightmare. This is NOT happening to me. I already had my cancer. It was easy, it was stressful, I lost my sense of taste, I would forget what I was doing, and I ruined a perfectly good pot and made an egg in a shell catch fire and burnt teabags, but I aced that cancer! I’m cured. I should not have to do this again. Why do I have to do this again? FFFFUUUUUUUUUUUUCCCCCCKKKKKKKKKKKKKKKKKK! I can’t breathe.

My husband takes my hand. The constriction in my chest eases just enough so my lungs can expand yet again. We have arrived back at the BDC, and now we head to the other door. The door that says to me,” YOU HAVE CANCER”. I am no longer just the woman coming in for my annual exam. Now I am the woman with cancer. Like I am defective. I didn’t do things right, so now I have cancer. I should have exercised more, lost weight, managed my weight, eaten better, and taken vitamins more regularly. Only drank red wine, not the bubbly or the whiskey…. I am bad. I have cancer. It feels like a walk of shame.

As we walk through the door, I hold my head up high.

Sign in. Wait, my name is called, and fill out more forms. Wait. Called back. I am taken to the dressing room, and the nurse explains how this will go. This will be an MRI with contrast, so once I am changed, all clothes off, into the provided tie waist pants, and the gown tied in the back, I will be taken to a room to have an IV catheter started. Once that is done, then I will have the MRI of my breasts, chest, and armpit area done.

As I prepare to change, the nurse brings me some socks to use as well. She says it’s cold in the MRI room. I then wait to be taken for the IV catheter. When the phlebotomist comes to get me, and we go to her little room, I ask her if she has a warm blanket.

“Oh, are you cold?”

“No, but if you want to be able to find a vein, that will really be helpful,” I as I hold up my arm and show her my nonexistent veins.

She agrees; let’s warm up that arm. As we wait for the warm blanket to work its magic on my veins, I give her the spiel on how this must go so the vein does not collapse. She takes it all in and says, we’ll let’s start you in a reclining position first, and we will go from there. She moves the chair around a bit so we can recline it, and then she competently goes to work, finds a vein, takes her time, and in it goes, no hesitation, and we’re done. I thank her for doing it in one fell swoop. She thanked me and said all the info I provided helped her, too. Back to the small waiting room off the changing room, with the warm blanket held to my chest like a life preserver.

The MRI tech comes and gets me. We go into the MRI room, and she explains how I will lay on the board with my breastbone positioned on a small pad on a bar between two rectangular openings where my beasts will hang. She will place a pillow under my feet and a small support under my pelvis to help relieve some of the pressure on the breastbone. My arms will be extended above my head like I am trying to fly like Superman. One hand will hold a “ball” that will be my signal if I am in distress, squeeze the ball. There will be three images taken without contrast, then the last image will be with the contrast. My gown is removed and I lay down on the table, we adjust my placement. I am provided with earplugs and earphones. The tech drapes the gown over my back. She places the ball in my hand. She hooks up the IV to the contrast. All set? Thumbs up. My breastbone hurts. I feel exposed. I feel like I am not a real person. It’s hard to breathe. The bed is raised, moved back, and then the tech asks if I’m ready. No, but I don’t think I will ever be ready for this.

“The first scan will last 4 minutes. Please try to breathe normally; do not take deep breaths.” Whir, cachunk, cachunk, cachunk, rrrrrrrrrrrrrrrddddddddddddttttttttttt. Da tat, tat, tat, and on it goes, sounding its loud cacophony as images of my upper torso, my breasts, are made. “OK, that was good. The next image will be 6 minutes. Here we go.” And more noise while I lay there wondering how I got here. “One more, and then we start the contrast.” Cancer is not dignified. You are exposed, raw, and hurt. Fear curls throughout you while you are bombarded with tests, x-rays, imaging, and chemicals. You bare parts of yourself to strangers as if you do this every day. Breathe. Do not cry now. Fucking lump. “And now the contrast. You might feel a little cold. This scan will take 20 minutes.”

I am finally done. My breastbone feels bruised. The tech removes the catheter. They use the stretchy cling tape instead of regular bandage tape. Nice, no itching. I get dressed, and we go. I can’t do this. I am not strong enough. I’m just a little frightened girl. We go home. There is so much information. I feel like I need to know it all before we meet the Oncologist. I set myself up on the sofa with my “Cancer Box” and started reading.

I am overwhelmed. This is too much. IT’S TOO FUCKING MUCH. I crawl into my husband’s lap, and he holds me while I cry. It’s loud, sobbing, snot dripping, heart-wrenching, face swelling, can’t catch my breath agony. Life is not the same. Life is hard, life is short, life is unfair.

I don’t eat at all that day. I can’t. Finally, it’s bedtime. I take a shot of Nyquil to help knock me out. I want, crave, and need the oblivion of sleep.

Life is wishing for oblivion