Category: My Journey

Pillow talk

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First day post op

I found a way to sleep last night. I found that using a low step stool helped me get into bed. I had trouble getting deep enough in bed by just sitting on the edge of the bed. The step stool allowed me to have some extra height to situate myself further on the bed. I have discovered that two different shaped pillows have been helpful to support me during sleep. A sports bra or other comfortable bra should be worn to help give support to your breast. I woke up refreshed and able to move better in the morning. But as the morning progressed I became fatigued and needed to nap. The area for my lumpectomy felt good. There was very little pain and the swelling was going down. However, the area for my porta cath became red. Not warm. I began reviewing the reasons to call my doctor. Increased warmth or spreading redness of the skin area near the site, increased swelling, increased pain or tenderness, increased discharge at site (green/yellowish green), foul smelling odor, fever or chills. I will have to watch it. Some tenderness and redness is fine but increasing redness or tenderness is something to watch closely. I guess I am a little hyper vigilant right now. I really don’t want anything to derail my recovery.

Sleep is  of course one the  most important things for recovery.  Fatigue or excessive sedation from the anesthesia is common.  This feeling can last for a few hours post op or several days.  It may be exacerbated by not being able to have a fully restful sleep at night. The right pillow can help.  I have  found, for myself, the heart shaped pillow  that the hospital gave me was perfect the side of my lumpectomy.  It helped first with going home and not having the seat belt rest on my breast and then for sleep by placing the “V” part under my arm pit or surrounding my breast.  It protected my breast from having anything rest on it.  It also gave me some  support under my breast.  Support is important to help not put stress across the  incision.

Another pillow that was  helpful was a knee pillow I had.  The knee pillow is supposed to go between your knees to help align your spine but I found that my knee pillow was the perfect shape for support on my porta cath side.  I placed one curved side against my body and one against my arm.  By pressing my arm into the pillow I was able to give that breast support.  My porta cath feels heavy and really needed support.  I struggled at getting up from sitting  without supporting that breast.

I found that laying flat  put too much strain on my porta cath.  My porta cath feels like it shifts toward whichever way I am moving and hurts with every movement.  I had a wedge pillow that really helped.

My final pillow was  from a friend of mine.  Her mother had breast cancer several years ago and a friend of hers made her an oblong pillow.  My friend made one for me.  This pillow acted like a wedge to support the side of my body. It is about 3 feet long and  8 inches wide.

Pillows are not only important for sleep but also for support doing other things.  Sitting  may require a lumber support pillow or a coccyx pillow.  A pillow as a head rest may also be necessary when you are sitting.  This may be especially true during chemo since the sessions are a few hours in the same place.  I have a head rest pillow that a friend gave me.  I will give it a trial run in the next few days.  Here is the link to the site.  I have the microbead one.

Here are some other pillows I have found on the web that might be helpful.  Here, here, here and here.

Now it is time to go back to sleep.  Hopefully, when I wake, I won’t remember the pain and feel fresher.

Surgery Day

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Today was the day- surgery day. It came upon me so fast. I spent the couple of weeks in a whirlwind of activity. I was trying to plan all that I could plan. I made food that freezable, made individual jars of yogurt, set up my room for easy access of things I might need, went for wig fitting, made a chemo bag, made a multitude of calls to look into resources, support groups, bought bras and clothing that would be easy on and off. This was clearly fueled by my desire to control what I could control since so much of cancer is out of my control.

Check in at 7 am, felt surreal. Answering question after question that were about me but I seemed to respond as if it was someone other than me. I then went in to prep for the operation. The first part is to wipe myself down with chlorohexidine wipes. These are antiseptic wipes that will help decrease the chance of bacterial infection during the operation. It is important to note that if you shave the day of surgery, the cholorhexidine will sting the shaved skin. It really really stings. After the wipe down and stinging, I put on a gown and having my IV started I waited for the next steps. I was wheeled down eery white long corridors lined by white doors. It was like a scene from the Matrix waiting for the Architect to offer me two heinous choices .

Marking the Tumor

The tumor must be marked for the surgeon to easily find it. If it is hard to feel then ultrasound may be used to find it. This is done either by  marking with a felt tip marker on the skin to show where the tumor is or by  inserting a flexible wire.  This insertion of wire is guided by ultrasound. Mine was by flexible wire. The wire has a needle attached to help with the insertion which is then removed once placed. The area of the insertion will be anesthetized with a local anesthesia such as lidocaine. I tired to not look but couldn’t resist once the wire was placed. I looked down and saw a very flexible wire wobbling about 5-6 inches out of my breast. Looking almost like an antenna of a large bug (yes, still with the Matrix images swirling in my head). Once inserted a “gentle” mammogram was taken for placement. I am not sure why they say gentle when the mashing of your breast between two large paddles is anything but gentle. Perhaps they should instead say “less brutal” mammogram. With the less brutal squeezing done I was wheeled to another very white room. A very pleasant looking woman comes in to start off with a warning, ” this is going to be very painful”.

The sentinel node dye

Prior to surgery a dye will be placed to see lymph node involvement. The sentinel nodes (the first 2- 3 lymph nodes) will take up the dye for the surgeon to see to remove them. The sentinel node biopsy starts with four injections near the nipple with dye. She tells me it is very painful since the dye will go between the skin layers. I can only think, “why didn’t anyone tell me before it was going to be painful? Why is this the first I am hearing about this”. I braced for the worse. First one was a prick, second another prick, third and forth the same. NO PAIN! Many may feel pain. Just be ready. I am just grateful that mine wasn’t. More waiting. Then wheeled back to through the white corridor of doom back to my room wear my husband was there waiting for me. So good to see him. I finally felt I could take a breath.

The surgery:

My surgery was bumped up and I was able to start an hour and a half early. Which meant a group of doctors nurses and techs descended upon me to ask question after question again while a sedative was injected into my IV. I remember saying goodbye to my husband and the large curtain drawn open and my nurse say, “ready?” And everything went blank.

I woke up to hearing my name in a haze and then seeing my surgeon calling me. I was back in my room surrounded again by a gaggle of medical staff smiling at me. I was wearing a 70’s style tube top. Still unsure I wasn’t in a bad dream, I turned to see my husband smiling also and I knew the world was ok.

Now comes the next step of healing.

My Diagnosis

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I am diagnosed with Infiltrating Ductal Carcinoma, stage 1, grade 2 triple positive. I say this now as if it is my name, “Hi, I am infiltrating ductal carcinoma stage1, grade 2, triple positive. What’s your name?” I feel marked by this and forever changed. It started quite innocently with a screening mammogram. I am among the women who know I should get a screening mammogram but just keep putting it off. I take care of my family, my patients, everyone else first and leave this screening stuff for another day. I became fearful of the demise of the Affordable Care Act (ACA). Currently, under the ACA preventative care such as screening mammograms are free and do not need a referral from your physician. I thought I needed to get my free mammogram done now before the option was gone. Screening mammogram done without another thought.

The thickening

Two weeks after I get a call from the nurse coordinator. There was a “thickening” found on my mammogram. A “thickening” for peri menopausal women is usually nothing. It is not uncommon for women to have changes in their tissue that is completely benign. The thought of cancer still not registering in my brain. The radiologist was going to compare it to my previous mammogram I had few years before. I knew my previous mammogram was perfectly normal. So the call a few weeks later for a diagnostic mammogram and biopsy was no surprise.

The biopsy

The biopsy day came without much fan fare. My head was still in the place of ” I am old, this is normal “. I nonchalantly changed to the gown and was ready for my boob smashing diagnostic mammogram then to be escorted to the ultrasound room for the biopsy. The tech at the ultra sound room described the prep with first finding the suspicious area then marking it and then prepping with iodine. The radiologist would then come in and do the biopsy. She described the biopsy to make loud noise each time a sample is taken but I would have local anesthesia and shouldn’t feel pain. Ok, no biggy- find, mark , clean, numb, click click biopsy done. The sound of the biopsy instrument is actually really loud. Not so much a click but more of a bang. It is more of an ominous sound. With each bang, the realization of what I was doing hit me with each progressive bang: bang, bang bang, bang bang bang. 12 bangs in all. During this time I decided to take a peak at the ultrasound image as the doctor took the biopsy. On the screen I saw it – the thickening. The thickening was more of a mass. A mass that was clearly very suspicious for cancer and not just normal breast tissue change. I knew what I didn’t want to know. I knew I had cancer. I tried to push the thought away to patiently wait for the actual diagnosis but it loomed over me like a suffocating dark presence that I couldn’t see but only feel.

The call

A week later I got the call. I was at work while I was sitting in my office with my team. I run a clinic one day a week with a team of other specialists. I saw the number come up on my phone and I froze. I knew who was calling. I trembled as I picked up the phone, trying to sound professional and casual in front of my team as if this was an everyday call that doctors get. My voice did not betray me but my body did. My knees wobbled as I heard the nurse on the other end, “Doctor it is positive” As I write this, a shiver comes through me still. The words echoing in my head- it is positive. Just as she was saying this my primary care doctor (PMD) texted me that the results were back and positive. Confirmed by the written text- I had cancer. Cancer was never something I ever thought would be associated with me. Cancer was something I helped others deal with. Cancer was not something I would have to deal with. But I do have cancer and I didn’t know what to do. I was lost. Then the next text came from my PMD saying to come see her and we would work this out.

The choice

Deciding on who is going to treat your cancer is a very personal one. So much stress comes from the diagnosis and it is important to feel safe and cared for by your team. My internist recommend her breast guy and my ob/gyn recommended my his mother’s breast guy. But in the end I decided to go with the female surgeon at my hospital. There were a couple of reasons I chose to go with a different doctor than who my internist and my ob/gyn recommended. First she is a female. I felt more comfortable with a female. She was younger than the male doctors but she had on her hospital description oncoplastic reconstruction (reconstruction for cancer patients) and the others did not. Also she was in the brand new building next to my building which made it very easy to get to appointments. And finally, I wanted a female who would understand the importance of the breast in the way a female did and not a male since the relationship with the breast is different with males and females. In medical school I did a rotation doing breast augmentation and reconstruction surgery. The male surgeon was horrendous with his attitude to his patients. The misogyny was pronounced. While I am sure he was an outlier and not representative of male surgeons who do breast surgery, it still stuck with me and influenced my decision.

The team

I met with my team shortly after the diagnosis. It consisted of my surgeon, my radiation oncologist, my oncologist, my breast coordinator, and some lanky resident. My breast coordinator asked if I wanted to see all the doctors at once for the exam or one by one. I decided to go with them all at once. So the team lined up in front of me like a firing squad each one taking their turn in asking questions. Then came the exam. My gown was opened and each one stood in line to mash my breast for the exam. Weird and surreal is all I can say. One by one mashing my breast and turning to the others saying, “no it is not palpable “. I eyed the resident and gave him the look that there was no way he was getting in line. He stepped back.

I got dressed and was escorted to a room for the consultations. First my surgeon came in. She discussed the ins and outs of the surgery. My tumor was small and hadn’t spread to the nodes. I was a good candidate for a lumpectomy and then she showed me the BioZorb implant that would be for my reconstruction at the time of the lumpectomy. The BioZorb would be fitted in the area that the breast tissue would be removed. It comes in multiple sizes to fill in the hole. The BioZorb also has titanium markers on it for the radiation oncologist to be able to accurately target the radiation treatment. Totally cool. I would leave surgery with an intact breast looking similar to before. Love that!!!

Next came the radiation oncologist. He talked about the treatments, blah blah, my mind went numb after he said “5 days a week for ….” Radiation is usually recommended for women with lumpectomy it cuts the reoccurrence rate down drastically. There are some reasons that radiation cannot be done and that will be discussed in the treatment section.

Finally, my oncologist came in. I knew I had estrogen and progesterone positive markers. This means that there are receptors on my cancer cells that are for estrogen and progesterone. This helps in having a treatment that can target my cancer cells. Tamoxifen is the treatment of choice for premenopausal women. It is a pill that you take for 5- 10 years depending on your oncologists recommendation. Side effects are similar to menopause. I was ready to discuss that and be done. Prognosis according to the cancer society is now at 100% recovery 5 and 10 years out. However, I discovered I am also Her2 positive. Her2 is a biomarker on cancer cells that doesn’t have as good of a prognosis. The cells with Her2 are more aggressive. The good news is it can be targeted with chemotherapy but the bad news is it is more aggressive. The news stunned me. I had read the report and some how missed that. She went over the chemotherapy protocol. All I heard was hair loss. Hair loss!!! Now my cancer took on a face I didn’t want. I didn’t want to be reminded daily of my cancer. I wanted a simple snip snip some radiation and a pill for several years not the go in for nausea producing, hair losing kind of treatment. I am still in shock. My chemo starts in May. Time will tell how I handle this. My name is Infiltrating Ductal Carcinoma stage 1, grade 2, triple positive. I look forward to the day that my name will be Survivor.

Pink My New Best Friend

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Pink- I must confess was never a color I cared that much for. I grew up a semi Tomboy, as much of a Tomboy that I could be with my Mexican mother dressing me in overly frilly dresses. I loved to play with my brother and his friends, digging in the mud, climbing trees, and playing shooting war games. Pink was not on my radar. I was one of those mothers that was anti pink for my daughter when she was a baby. Trying hard to steer her away from the stereotype of pink for girls and blue for boys. It was my daughter that taught me my first lesson in pink when she chose to have a pink pepto bismol colored bedroom. Sometimes pink is a choice and not a stereotype.

I have recently discovered the symbolism of color. Hillary Clinton’s wearing white for signifying women’s suffrage, red on politians for power. And now I have found power in pink. I was recently, diagnosed with breast cancer. A diagnosis that completely took me by surprise. It was caught on a screening mammogram and not palpable – even after I knew exactly where the tumor was. As I struggled to make sense of my soon to be new world I became drawn to the color of pink. Pink from the woman’s march, pink for the breast cancer color. I began one morning of particular despair chanting “Pink power pink power” and found strength in that chant. I realized the power of pink. This is my journey with breast cancer. It is just beginning. Surgery is my first hurdle. I have decided to use my new found power to create this website. I will be filling it with information I know and also that I discover. Hopefully, my words and information here can help ease the path for others. My prognosis is good but my journey is long. I feel I am already a little stronger with the power of pink- my new best friend.