Tag: survivor

March 2019 – All the Posts I have not made

No parade for my birthday, but I did see the castle with “snow”

I know it has been months.  I have been busy, and there have been some things I was not ready to face in writing.  I am fine!  We celebrated my birthday at Disneyland, and I enjoyed every moment.  We rented a wheel chair for my birthday trip rather than use the ECV.  Robert and I had so much fun just being there I forgot to get my birthday button!

I also decided it was time to remove the TCST reminder from the bathroom mirror.  Remember way back at the beginning of all this, my wonderful spouse surprised me one day with the big take away words from the first Oncologist we met with when we received my diagnosis – Treatable, Curable, Survivable, and Temporary, TCST.  He had purchased pink decal letters and spelled those words out on the bathroom mirror so I would see them every day as a reminder while I was going through treatment.  It was time for them to come off, for me to move on from being the patient to being a survivor.  Once they were removed, I felt another little weight that had been hanging around my neck float away.

I noticed that as I slowly moved away from the fear and anxiety of this serious diagnosis and treatment plan, and worked towards loving myself again and having joy back, the lighter my heart felt.  I perceived with each little step forward less tension in my back, that squeezes around my sides and restricts my breathing.  It was also getting easier to take those small little steps back into the light.  Still not 100%, but getting ever so closer to feeling like I am whole again, at peace with myself.

We went up north to celebrate Chanukah with my family, and because my cousin was not feeling well, I was put in charge of the kitchen.  I wondered how she managed the last Chanukah and Passover without me there.  She is always breaking something or having a surgery to fix something that did not heal correctly and it seems like she needs to be off her feet, so I am in charge of making sure everyone gets their dishes out on time and any specialty foods are prepared to our exacting requirements.  Moreover, by our, I mean Deda and my preferences.  We have worked over the years to perfect the Latke recipe, and I have worked to make Noodle Kugel to our liking not only for Chanukah, but kosher for Passover too.  Do not get me on how many years I have experimented with different recipes of kosher for Passover fluffy light Matzo Balls!

So there I was with my neuropathic feet and hands, directing the cousins and kids on the art of making our crispy on the outside, creamy on the inside shredded Latke.  I made sure I took time to go rest my feet at well, between the prepping, mixing and cooking of all the Latke.   And making sure everyone else was coordinating the use of the oven and microwave accordingly to get dishes out on the buffet timely without going cold.  At one point, we blew a fuse, so I went to ask Deda where the breaker box was so I could trip the breaker while the “Kids” moved the electric skillets around in the kitchen so we would not have a repeat of overloading that circuit.  Deda had been ensconced on the sofa, cuddled in a blanket trying to keep her germy, virusy self away from everyone else.  When I told her what I needed she started to explain where I could find the breaker box and gave up, as she just knew she could not explain adequately so I could locate.  I headed down the hall to the garage as she heaved herself up out of the sofa and made her way to the hallway.  I am a good 25+ feet away when she makes the step up from the family room to the hallway and promptly kicks the corner of the wall at the edge of a 6 foot wide (maybe more) stairway.  I heard the crack of her little toe, and cringed.  I asked her if that was her toe, as I slowly turn to see her bent over, holding the offended toe, trying to not yell “Ow, ow, ow, FUCK, ow!”  Yes, she broke it.  Told you she breaks things!

As she hobbled to the garage to trip the breaker, I went to the freezer and made up an ice pack for her.  She had an Expo the following week, and there is not much you can do for broken toes, except try to stay off them.

Relaxing with the sick one
Nane Wisnia would be so proud

I went back to work too!  Part time, started out at four hours a day.  When I had met with my boss and HR, we were thinking 10am to 2pm, but when I checked in with them before the week I started back in December, they asked if I could work Noon to 4pm instead.  That would provide the needed help in the afternoons to get ready for the 2nd shift and review of empty shipping containers that needed to go back to the ports.  Yeah, I could work with that.  First week back and I did ok.  Up to this point, I was feeling really tired from the effects of the Gabapentin; but I was still working with Dr. R on that aspect. 

Work is not all bad…
Work is not all bad…

The weekend after our trip up north for Chanukah, our wonderful neighbors told us they were once again hosting a Christmas Party, and for the first time in years, we would be able to attend since we would not be out of town for Chanukah.  On the appointed day, I took it easy.  Robert started getting antsy about 4pm, telling me to stop taking things I was done with out to the garage, to not take out the garbage, to just sit and relax.  When I would push back and tell him I was fine, he kept reminding me we were going to the party and I would probably be on my feet a lot, I needed to rest.  At one point, he was even pushing for me to take a nap.  Something was up, but I could not figure out what was wrong.  As he was getting ready, (he had just exited the bathroom after taking a shower), there was a knock at the door.  Low and behold, there were my parents (Dad and Mom#2).  I gave them a look like “what are you doing here”.  We had just seen them the week before when we went up for Chanukah.  My first thought was they had come down to visit friends and were early so they needed a place to crash.  I opened the door wider for them as my Dad gave Mom#2 a look and mumbled something about not reading the invitation correctly.  I apologized for the look of my house, I was being partially lazy all day in preps for the party at the neighbor’s house shortly and then the guilty look on my mom’s face really took over.  OMG that is why Robert was now cursing in our bedroom, my parents made the “good neighbors” list and them being invited to Bob and Moses’ Holiday party was a surprise for me!  Mom made me swear to act surprised when I walked in and they made their way across the street.  How sweet! 

I went to get ready and asked Robert if my parents were the surprise he was trying to hide and why he kept telling me I could not take out my trash or go to the garage earlier.  He said, yes, that was the surprise he was trying to hide from me in case they parked their car where I would notice.  He has been talking about replacing his car for almost a year now, and doesn’t know what he wants, so I was thinking he had finally made a decision and was hiding his new car in Bob and Moses’ driveway!  They have so many I would not notice if there were a new car there or not quite frankly.  I was wondering why he felt he needed to keep it such a secret.  However, that is how my mind works.

We finished getting ready, and Robert said we should head over.  Moses was waiting for us at the front door and said everyone had gathered out back, but he was waiting for his sister.  We headed out back and SURPRISE; it was not Bob and Moses’ Holiday Party, but a surprise late birthday party/done with cancer party for me!  Not only were my Dad and Mom#2 there, but my Mom, brother Rob, nephew Kevin, cousin Deda, Heather, Joseph, Jordon and Kelly, some of the close neighbors (as I had been promised for the Holiday party), as well as my Breast Cancer Support Group!  I was totally blown away!  The kids supplied all the food and drink, while Bob and Moses supplied the venue AND a photo booth.

I got to keep a copy of all pictures taken at the photo booth.  We had so much fun with that.  Remember when I mentioned that my cousin manages to break something all the time?  Well she and my son Jordon were playing with props and posing in the photo booth.  Deda decided to remove her glasses, and Jordon, decided to whip a boa he had around his neck back, which managed to whack Deda in the eye.  All of this was caught in the three-photo strip produced by the magic photo machine.  I laughed so hard!  Yup, she tried to break her eye….  LOL.  They won for the best photo strip produced that night.

I had a great time at this surprise party, and reminded yet again how lucky I am to have such a wonderful family and friends.

We hosted Robert’s cousins, aunt, and his mom and stepdad for Christmas Eve, with all the usual food and fun.  As has become the custom, the cousins brought me a gift of my favorite whiskey – Midleton Very Rare Irish Whiskey.  This is a delicious sipping whiskey with a wonderful citrusy finish that pairs wonderfully with chocolate!  It is also very expensive.  Imagine my delight to see this wonderful gift yet again.  After about a year of not being able to drink wine, beer or my whiskey, I am sure you can just begin to imagine how excited I was to be able to enjoy this fine sipping whiskey yet again.

Christmas day the kids all come over, I make beignets, and set out fruit and cheese for noshing, and we open gifts.  This year Robert had finally cleared out the back section of our back yard and started making the BMX track for Joseph to ride on that he had been promising.  Not everything they had discussed was built, but there were enough berms and a large tabletop in place they could ride back there with ease.  Great Grandpa Hassing and Great Grandma Sue gave Joseph riding gear for Christmas, while we supplied a bike to keep here, along with a helmet, all in his favorite color green.  Then Grandpa surprised Joseph by coming out on a bike himself so they could ride together.  The kid was in heaven, so happy to be able to ride out back in his own special riding area.

The New Year found us once again up north with my parents celebrating the holidays with them.  We took a day to go exploring with my brother Rob and nephew Kevin.  We headed to the north side of the Golden Gate Bridge to check out the scenery, do a little hiking, and ended up on Rodeo Beach where Kevin built a stacked sculpture from items found on the beach.  We all had a great day being outdoors and spending time together.  Good food while we were up there, wonderful conversations, and a relaxing time spent with all of them before we headed back home and back to work.

We also now have a grandkitty.  A small kitten was found in a dumpster with an infection in her left eye socket and starving.  Heather agreed to foster the kitten while they had her on antibiotics to clear up the infection and to see if she even had an eye in the socket.  The vet Heather works for didn’t think she had an eye, but it was hard to say for sure due to the massive infection.  She still needed to be bottle fed for a bit before she could be weaned to kitten food.  Heather, Jose and Joseph originally thought to name her Mittens because of her markings (black and white); we suggested a better name – Winky. 

Winky is what we call a foster fail.  Heather agreed to foster until she was ready to be adopted, but it seems the family is in love with that cute little one eyed beauty, so there will be no adoption.  Winky has her forever home and we have an adorable grandkitty that comes over for family dinners.

Robert has agreed to watch Joseph several times when he has holidays from school, but Heather and Jose both had to work.  They have enjoyed their bonding time of riding in the back yard together, watching movies and eating pizza.  It’s so much fun to watch the two of them together. 

I continued to fight with Dr. R about getting me off Gabapentin for two more months before I finally told him I was referred to him to manage the psychotropic drugs to deal with my neuropathy symptoms since Gabapentin made me so dang tired.  He made the mistake of asking me once again how irritated I was feeling.  I told him the only thing irritating me was him, and why was I spending my money there to get off of Gabapentin if he was not going to help change the medication over to the next phase of drugs – the psychotropic meds?  He seemed to want to ignore that statement and asked me yet again about work.  In February and I had added another hour to my workday, so I am now working 11am to 4pm.  He wanted to know how this was going; did I feel stressed about my working conditions?  Every appointment he asks me this, and every appointment I tell him I am not stressed about work, or the conditions!  Yes, I now work for the person who used to work for me.  Yes, my old job is no longer available, but the President of the company did not have to take me back, yet he did. I am working, slowly getting back to full time, and not being pressured to do more than I think I can handle without stressing myself out or overdoing what I can physically handle. What do I have to stress about, other than you Dr. R?  I once again explained to him why I was there, not for him to manage my moods or emotional state, but to manage the prescription medications to manage my neuropathy.  His first response was I do not manage neuropathy.  I must have given him “the look”, as he immediately asked me when I see my Oncologist again.  I told him I had just seen her.  He then asked me “what did he suggest?”  I told him “SHE suggested Lyrica”.  He gave me a look and said ok, let us stop the Gabapentin and we are going to try Klonopin which is a sedative used for seizures, panic disorder and anxiety.  Psychotropic drug in the benzodiazepine family.  He started me off on the lowest dose, .5mg.  I am not thrilled that we are starting with this particular psychotropic drug, but glad that he is finally listening to me and we are now turning in the direction that I need, not the direction his overbearing pompous ass has decided I should be going.

Heather, Joseph and I went down to San Diego area twice for Guild meeting and projects.  I had a wonderful time visiting with our Guild members both times and I am looking forward to spring fair.  I will only be attending one weekend as my dear cousin has scheduled the family Passover Seder on the last DAY of Passover, which is also the same as the first weekend of spring fair.  For those of you who don’t know, Jewish holidays start at sundown the evening before the day of the holiday and run until sundown of the last day of the holiday (for one day holidays it is from sundown to sundown, for multiday holidays it runs sundown, days 1, 2, 3… to last day of celebration sundown).  Since I missed Passover with my family last year, I do not want to miss it again this year.  So only one weekend of fair for me this spring.

I had my first “infection” since chemo.  I woke up one Monday morning about 4am with the chills, body aches, and my face feeling like it was about to blow off from all the pressure in my sinuses, but I could breathe just fine.  I took a dose of Nyquil and went back to bed.  Finally dragged myself up again about 9am and was still shivering.  The last time I was shivering like that and could not seem to get warm was when I was on chemo.  Duh, I must have a fever!  I pulled out the thermometer we had purchased to keep tabs on me during chemo treatments and took my temperature.  It beeped after about 30 seconds and when I pulled it out from under my tongue, it read 358o!  Then it flashed red and displayed the message it had a low battery.  For a second I thought for sure the message was going to tell me to get to the ER now!  I asked Robert to feel my forehead instead and he said it felt a little warm.  I was still feeling the major body aches and the sinus pressure, so took another dose of Nyquil, texted the office I would not be in and went back to bed.  Other than getting up to pee and drink more water, I slept the whole day and that night.

The following day I was still feeling the same, so stayed home from work another day and other than about 2 hours in the afternoon that I forced myself up to eat something, I slept in bed.  Robert knew I must be sick if I was not even getting out of bed and napping on the sofa, which is what I mostly did while I was on chemo.  I would get up, make myself wash and brush my teeth and head to the sofa.  Even though I was exhausted most of the time, I would still take my naps on the sofa, not in bed.  I was not ILL then.  Well, except for that one time when I spiked the fever, but the antibiotics I was supplied with at the start of chemo took care of that right away.

By Wednesday of that week, I still felt the pressure in my sinuses, but the body aches and the chills had mostly subsided, and my ears were feeling clogged, but I was still breathing ok, so I went back to work.  Same with the following week, but now that pressure in my sinuses was starting to create congestion, and I developed a cough, that was just getting worse.  I called my GP’s office and scheduled an appointment on that Friday morning.  She was not happy with me.  I had blazing ear infections, a glorious sinus infection (even though when I blew my nose my phlegm was clear, but when I used my Neti pot, that would flush some nasty looking globs out of my sinuses), and she didn’t really like the sound of my upper lungs.  No crackling but I did sound a little wheezy, so the infection was trying to work its way down.  In addition, I had been masking my fever for the past week and a half with Dayquil.  I was at 99.9o when they took my temp there.  I was told to go back home, take the antibiotics and rest.  I could go back to work next week.

I was not sure how I felt about being ill.  It almost felt like a badge of honor and I should be proud, I survived Chemo, surgery and radiation and now I was allowed to be “normal” and pick up the passed around germs and develop infections like all the rest of the “non-cancer” people.  On the other hand, I was not liking being sick.  It felt so foreign now. 

During my 14 months of treatment and recovery, I re-connected with one of my high school teachers.  I loved this teacher, he cared about his students, and even though he was the music teacher, and I did not play an instrument, I did have him as the director of marching band – I was in the rifle core.  In the spring, he would have me as his TA for my first class of the day so my schedule would not get messed up.  He would talk to us, try to impart wisdom, and was always there to listen when we had a problem, whether at school or home.  If you messed up he expected you to be honest about your mistakes and he imposed penalties.  Usually an essay about what you did wrong, examine your motives and decision making, how your error affected those around you and yourself, and then provide a plan on how to prevent the same error in the future.  He cared. 

He planned a trip to SoCal at the beginning of March.  We made arrangements to meet up for coffee and a nosh before I had to get into work.  It was wonderful catching up with him and hearing about some of my classmates. We talked about some neither of us have connected with since graduation, which we both found sad.  One of my classmates won an Oscar this year! He was very proud of what this student had done with his music.

Now to address what I have not wanted to put in writing as it makes it all too real.  Two of the women in my support group are still battling their triple negative breast cancer (TNBC).  Mary Jo knew she was positive for the BRCA1 gene mutation, but had not had a prophylactic bi-lateral mastectomy.  Last year she found a lump in one breast and when they did the diagnostic imaging they found another smaller lump (DCIS) in her other breast.  She opted for chemo and a lumpectomy on the invasive spot, but wanted to wait and see what would happen with the DCIS.  When she had her lumpectomy, she had not had a complete pathological response to chemo, even though her invasive tumor had shrunk considerably.  She also was afraid radiation therapy would cause her more problems with recurrence, so opted to reject that recommended treatment.  Her doctor did enroll her in a trial group for immuno-therapy though.  A few months later, she found another lump in the same breast that had the lumpectomy.  This time she did have a mastectomy and she is now back on chemo. 

She has sought out a secondary opinion with an Oncologist at City of Hope.  The first thing they told her is that the chemo regime she was originally given is not a proven track record for those with the BRCA1 mutation.  Her original Oncologist should have known this as it is proven in journals and AMA publications.  The standard chemo regime for TNBC with BRCA1 mutation is different than those without the BRCA1 mutation.  Her oncologist had put her back on two of the standard drugs, Taxol and Carboplatin, in the standard dosing.  Since she went back to them with the City of Hope’s initial information, they have changed her chemo regime to the correct one for BRCA1 – Gemzar and Carboplatin in a dose dense cycle; switching off weeks and waiting a week before starting the next cycle.  We are all very hopeful that with the City of Hope now consulting on her treatment plan, that this will kill off any residual cancer cells and she can be cancer free.

The other woman in my group with TNBC is Kelly.  She is negative for all the usual gene mutations they now test for BC risk.  When she originally found her lump, her doctor ordered an Ultrasound.  The tech only scanned half her breast, and they proceeded to schedule her for a lumpectomy rather than a biopsy.  Her pathology report came back as TNBC, so they then put her on chemo.  She was going to opt for a bi-lateral mastectomy and trans-flap reconstruction and avoid the radiation therapy.  As she ended chemo and was waiting on her body to recover enough for surgery she kept feeling a lump very close to where her original lump had been.  Her oncologist kept telling her it was just scar tissue, not to worry.  She finally insisted they do an ultrasound.  That was when she found out the original ultrasound was done on only half her breast.  This time they did both breasts.

They found another lump and did a biopsy.  With the pathology report due any second, as she was going into surgery for the bi-lateral mastectomy and trans-flap surgery, she told her oncology surgeon that if the pathology report came back as positive for ANY active cancer, she did not want the reconstructive surgery.  13.5 hours later, she woke to find that it was active TNBC, and despite her request to omit the reconstructive portion of surgery if there was still active cancer, the plastic surgeon had proceeded with the reconstruction.

Several weeks after this happened she noticed a rash on the side where her lumpectomy had been.  Her oncologist told her it was probably a reaction to something and not to worry about.  Her rash quickly spread and grew worse – becoming painful with open sores.  She insisted they biopsy the rash to figure out what it was.  TNBC, due to sloppy surgery had been spread to her skin.  They scheduled her for radiation treatment.  In the meantime, she went to City of Hope for a second opinion.  First, they told her after reviewing all her records that she had grounds for a malpractice suit.  Then they told her that if they cannot cure this spread of her TNBC, they can manage it long term.  They had several TNBC patients on long-term management care, one going on 20 years now.  She is now going to UCLA with oversight from City of Hope and fighting for her life.

Yes, these stories scare the shit out of me.  I remind myself that after chemo I had no signs of active cancer from my original tumor and no signs of active cancer in my lymph nodes.  This is such a positive for me in regards to my long-term recurrence and survival rates.  This helps when that little dragon tries to do loops in my torso, and the demon in my brain tries to negate every positive thought in my brain.  When I feel the that dragon and demon, I remind myself to relax my jaw, to breathe in slowly and deeply, hold a moment then exhale just as slowly.  I start paying attention to what I hear, see and feel around me to take my focus away from the negative and be in the moment.

These two strong, fighting women, along with Armanda who is the ER/PR positive metastatic “newcomer” to our group inspire me and scare me at the same time.  I pray for them daily for their cure, then follow that with if not cured, then let them be on long term, VERY long term management of their cancers. 

Life is praying for my friends

Thursday October 5 – Port Placement

First, let me start this off by saying that, based on the long list of bathing instructions I was provided, the description of the procedure, and how long everything would take when I was called to schedule the appointment, I would be home and working by 1 pm to 2 pm at the latest. I also thought I would make this post last night. Little did I know…

As I had been instructed, I ate no food after midnight the previous night and only enough liquids to take my morning pills.  I hate this part, as having little to no liquid in the middle of the night and again in the morning makes it hard to access my veins.  We arrived at the hospital at 9 am sharp, as I had been advised when the appointment was scheduled.

We went to admitting, and the admitting procedure was done quite quickly. The next thing I knew, we were headed upstairs to the outpatient waiting room. I felt like we barely sat down before they called me back to start getting me set up.

They don’t let my husband come back to sit with me until after everything is done, gowned, and the IV catheter placed.  I was told to disrobe completely, but could leave my underwear on (not my tanks) and could tie the gown in the back.  That done, I went onto the transport gurney.  Next came time to find that vein…  The nurse asked me if there were any tricks for starting the IV catheter, and I told her my spiel. We decided the first thing we needed was a hot pack to try and get my veins to stand out better.  Off she went to get that.  In the meantime, the second of the four nurses assigned to my bed number (58) came in, and we were going over my med list and the last time taken.

Nurse number one came back with a hot pack and a handheld near-infrared scanner.  Oh My G-d!  This device was so COOL!  I’d read about them a few years ago and thought I needed to purchase one for myself and take it with me to any appointment that involved a needle stick for blood/vein access.  Read about it here.  We let the hot pack sit on my arm the last place I told them a nurse was able to get an IV catheter placed and waited a few minutes.  Then the nurse pulled out the scanner, and away all three of us went, trying to find a good vein without any valves to hinder the catheter.  I now had a visual of why it is so damn hard to place a catheter!  My veins are TINY, deep, and branch off with very few places with enough length before a valve (evidently, I have TONS of them), or they branch off to other veins.  I think the three of us scoured my arms and hands for about 40 minutes, trying to find a suitable vein that would cooperate, alternating the heat pack around, and trying to get a vein to the surface for easier access.

It was phenomenal how this worked.  We first tried a good vein on my right forearm, but it was too deep to access easily.  Chevy apologized for the stick that didn’t work, and I told her there was no problem.  Once she knew it wasn’t going to go in without digging, she stopped and backed off.  That I can handle with no issues, and the parasympathetic nervous system doesn’t care.  Then we found a nice fat vein on my left arm at the elbow.  I told them for over 10 years, I’ve treated my left arm as a Turnip – can’t get blood out of it.  Oh, we would try. The catheter would go in and get a great blood return, but the minute anyone tried to get the blood to come out, nothing or just a little dribble and then done.  Like I said – turnip.

We decided to go for it. Because it was an odd angle, I rearranged myself on the gurney to make it easier for Nickie to work with. The catheter went in great, and it gushed! They did need to take a small blood sample, and we got that and more. I guess leaving it alone for ten years made the difference.

Once we got my arm cleaned up and finished all the input for my chart, Nickie went to bring my husband back.  My procedure was scheduled for 11 am.  We talked and read or played on our phones until the head nurse for my surgical team and the surgeon came over to talk to us about the procedure and let us know it would just be a few more minutes while they finished getting the room ready.  Dr. Beck showed us a port and explained how it would work.  You can read about the type of port I have here.  I was originally told at the oncologist’s office they access the superior vena cava, but this port actually accesses a jugular.  There will be two incisions.  In one very small spot, they access the artery, and then the main incision, about an inch or so long, is where they place the port and attach the catheter.  This is done using a contrast dye and imaging several times during the procedure to ensure proper placement and no additional soft tissue damage than necessary in the area.  So this is why the procedure is done in radiology.

I kissed my husband goodbye, and off I was taken to the surgical room.  I knew that port placement was done under a local anesthetic – Lidocaine, in conjunction with a twilight drug.  They also use an iodine-based contrast.  I transferred from the gurney to the surgical table; why do they place you in a cotton gown and then cover everything with cotton blankets? Nothing slides! As I was trying to transfer myself with some dignity from one to the other without choking myself out or dragging blankets behind me.  We all laughed at that.  The surgeon uses electrical cauterization to help close wounds, so a grounding pad was stuck to my back before I lay down to center myself on the narrow table.  Took a good 10 or more minutes to get everything set up before they started the actual prep for the procedure.

Dr. Beck had looked at my chest/shoulder area back in the staging/recovery area and said I needed a medium-sized catheter, but he wanted to double-check once they had me laid out, so we waited for him. They asked me what kind of music I wanted to listen to during the procedure. Classic Rock worked, and all the nurses and technicians in my surgical suite agreed that they should change Pandora to Classic Rock.

Dr. Beck came back in, re-looked at the area on my left side right below my clavicle, and confirmed that a medium-sized port/catheter was what I needed.  Once that was confirmed, the correct size port was retrieved, and the serial number was recorded.  They started the draping process; my left breast was taped down to mimic my skin and muscle placement as if I was standing, EKG was hooked up, cleaning of the field with betadine, and then the draping.  They have that surgical tape they place over the surgery field now, and that was stuck to the towels draped around, and then a tent was draped over me, so I could not see what they were doing.  I did have an area to my right where the head nurse would stand and keep watch over me and talk to me during the procedure.

It was finally time to start.  Hit me with the good stuff.  I thought I would probably sleep at this point, like I do during a colonoscopy.  Nope, I remained bright-eyed and bushy-tailed, more so than I thought they wanted, so I was given a bit more.  I don’t remember what drug they told me they use for this…  After a third smaller “hit,” I finally noticed when I blinked I was much slower to re-open my eyes.  Not tired, more…. lazy.  Ahhhh, this is what they wanted.  Relaaaaaaxed.

Dr. Beck then started administering the Lidocaine.  It stings a bit, but not for long.  We talked back and forth during the procedure, and then, somehow, we got to football.  Dr. Beck is also a true blue 49ers fan!  I told him I would high-five him, but he was a little busy.  We all laughed at that.  We discussed the current team, our hopes that eventually, we will stop being in a re-building year, how we both would love to fire the owner, etc.  During a lull in conversation, the music stopped right after the last image was taken to ensure everything was in the correct place and no other soft tissue damage that might need to be corrected before securing the port and closing me up.  Dr. Beck was the first one to notice.  The head nurse had to go in and tell Pandora that we were still listening.  As the next song came on, it started with a light chime, leading us to discuss Baby Rock, classics recorded on chimes as lullabies for infants.  I had them all for the grandson.  Dr. Beck still couldn’t tell what the song was that was playing, it was an extra long intro I hadn’t heard before, so it must of been a cover of AC/DC’s Hells Bells.  I knew what it was, and my right hand was tapping out the rhythm as the signature bell toll kicked in.  The head nurse looked at me and said, “She knows what it is, and I very lightly nodded my head.  Took Dr. Beck another second before he realized what it was and came up with the song.  Another laugh.

All done, I was taken back to staging/recovery and told at that point I had a mandatory 2-hour recovery time.  I was asked if I wanted any food or drink and requested some juice.  They were perfectly happy to let me just drink juice slowly.  I know that sedatives have a tendency to heighten my motion sickness, so taking things slowly is always my best bet.

My blood pressure was high for me, 128/90.  It was monitored over the two hours, and I noticed it was slowly dropping down to my normal range of 100-110/65-75.  Nickie was the primary nurse now checking on me and she had my husband brought back.  We sat there for the requisite two hours, again chatting and playing on our phones between Nickie’s checks.  Then she finally said I could go home.  I first had to pass a blood pressure test.  One final test while I was reclined on the bed – 113/72; next standing up, 121/79, and then sitting on the side of the bed, 111/73.  All good.  I had all my admonitions of what to do and not do, and I was able to get dressed while my husband went and got the car to meet me at patient pick-up.

A couple of volunteers took me down to the patient loading zone, and away we went.

We had noticed that my betadine wash was still left behind all over my neck, chest, and left arm.  Nice, I can’t shower, and I now have this lovely orange
“tan” on my upper body.  And it wasn’t even…  splotchy.  Can’t pull that off in public…  sponge bath awaited me once I was home.

Now, this is the point where I thought everything was fine.  I’ve had normal conversations for over two hours now.  My BP was coming along just fine, I could walk without issues, and turning didn’t make me dizzy.  My boss had called earlier in the morning while we were waiting and asked if I could pull some data for him, sure no problem.  I can get you that once I’m done here.  I opened my laptop, logged in, and opened the systems I would need to start working on getting him the data.  I texted my boss to confirm the data he wanted while I was pulling it up, and damn, that did not work right.  What was I thinking?  I’ve got the wrong stuff pulled up.  I have email open.  Now texting can be interesting sometimes, so I didn’t think anything of the fact that I had to retype/delete quite a bit while I was putting together that quick text.  But email, now that was a whole different story!  I reset my search criteria to start the data pull for the boss and then tried responding to some emails.  I couldn’t type for the life of me!  I had to pick each letter slowly to make a coherent word.

Just as my boss texted me back that the data could wait until Monday, I had the first set of data I needed to get him what he wanted. I dumped it into Excel and then proceeded to butcher it. What? Why did I do that? Undo, undo, undo. I tried that again, and oops, I deleted the wrong thing. Why do my fingers not work?

See the text from the boss and agree that this should probably wait until Monday.  I can’t type for the life of me.  I don’t understand.  I’m coherent!  I go back to the original email he sent me and respond to that to confirm my text message that I will try this again on Monday, evidently I am extra “relaxed” still.  Took me seven tries to type the word relaxed correctly or even to the point that spell check understood what I was trying to type.

It was shortly after that when I hit the wall.  All of a sudden, I needed a nap.  Water, a small bite to eat, and a NAP.  I fell asleep on our chaise lounge and slept there for about two hours.  When I woke up, yeah, the Lidocaine had worn off.  Ok, that kind of hurts.  I can take Tylenol.  Sleeping will be interesting, left side sore from the port placement and right boob hurts if too much pressure is placed on it.  This is going to be a fun night.

Life is moving closer to Kickin’ Cancer’s Ass!

Wednesday October 4 – Last day in the office.

My medical leave officially starts on Friday, but tomorrow I have to report to the hospital in the morning to have my port installed.  They use a local in combination with a twilight drug, so I can’t go back to the office after the procedure is completed.  Today was my last day in the office.

It was bittersweet.  I received flowers and a box of chocolates  from the company, and some really nice cards.  My boss said I had to eat the chocolates, I could not leave them behind for him.  I keep my boss supplied in dark chocolate.  Even told him I’d send my husband down from time to time with a resupply.

As the girls in the office started leaving for the day, the would stop by my office to give me a final hug good bye and reaffirm their faith in me to kick cancers ass.

They all know I am still going to be helping as I can from home, mostly helping with research on issues and systems maintenance.  But it was so heartwarming to have them all go out of their way to wish me well and add their words of encouragement to the battle ahead.

I am so thankful for the people I work with.  I know I have been blessed in this area.  I cannot even imagine being able to do this without their support and the constant reminding me that I am strong and can do this.  They are a fantastic group of people and I love working with all of them.

I arrived home to find a Cancer care box had been delivered courtesy of my cousin.  She purchased it through Choose Hope.  It included a T-Shift, soft blanket, and warm fuzzy socks, a water bottle, a note book, a magnet with the a reminder of what Cancer Cannot Do, hand sanitizer, moisturizer and lip balm and all with a tote bag to carry it all to Chemo treatments.

On top of that, she told the family how to order personalized shirts to reflect their support of me through the Komen Foundation.

If I have to do this, at least I know I have the support of so many!  My family is great at this, so supportive and keeping spirits up.  Getting in with their sleeves rolled up to do what needs to be done.  And then there all the wonderful people I’ve met over the years, between work and Ren Faire.  I have made some really great friends and all of them have been and continue to be so supportive.

I am feeling more in control the closer I get to treatment starting next Tuesday.  I am grateful every day for all the wonderful people in my life that are rallying around me to cheer me on and help keep me strong through this process.

Between all these wonderful people, my husband and my kids, I will make it through this metamorphosis and be something beautiful on the other side.

Speaking of husband, he had previously decorated our bathroom mirror with my daily reminder that this is treatable, curable, survivable and temporary.

Life is moving forward.

Tuesday, October 3 – Dr. Appointments, Dr. Appointments, Dr. Appointments, and Group to top it off

I had my annual physical in the morning. My primary care physician was so sorry I am dealing with this. Later, I realized she never asked me about getting my annual mammogram. The left breast has only had a recent MRI. I wonder if that counts.

We talked about my sleeping problems, and I told her the Oncologist prescribed Ambien, but I’ve only used it a few times. Are there any other options? She reviewed some and suggested Lunesta, but the same issues with that as Ambien mean it should not be taken consistently for an extended period of time. I told her I would think about it. She gave me a handwritten Rx, just in case.

I asked her if I should see a dietitian, but she wants to wait and see how I do on chemo before we go that route.  I told her I worried about my weight loss and our goal.  She said we would cross that bridge as we came to it during chemo.  I still want to reach my goal weight.  I am still not comfortable in my body.  And that is besides The Lump.

We talked about everything that had happened in less than a month, how I fell apart from my first Support Group.  She asked if I was going to go back.  Well, yes.  Just because I was overwhelmed last week doesn’t mean I can’t try to find some value in this.  My husband found value in his support group when he didn’t expect to connect at all.  I can do this.

We went over my blood work, Thyroid was a little high, I told her I actually forgot which day I was skipping a pill (my dosage for several years now has been 6 days a week, one day off).  I messed it up the week before my blood draw, and I have a feeling I took more than 7 pills that week.  It’s been a bad month.  I swear I will be better, and I have already double-checked my dosage for this week after I realized on Sunday that I had taken a pill the night before, and I had one in my hand for my “day” pills.

Then, there were some white blood cells in my urine—not a lot, and nothing grew when the lab tried to culture any bacteria. I told her the lab I went to had no antiseptic wipes. I washed as best I could with a paper towel, soap, and water, but… So yeah, I don’t plan on going back to that lab again. I was surprised that for clean catch, they had nothing!

Everything else on my labs was fine.

We agreed that I should increase my D3 to at least 2000 IU daily instead of just 3x weekly.  She said I could go higher.

I forgot to ask her about a medical cannabis card, just in case.  We’ve (husband and I) talked about how if chemo is really rough on me, this is an option.  Just the cannabis oils or edibles.  Really not interested in smoking!

I went home, did some work, and then had to turn around and return to have the echo-cardiogram.  It’s the same medical complex.  I told them I’d had at least two echoes previously at Torrance Memorial, but they said I had to do a complete baseline echo because this was my first time in their office.  They didn’t even have a gel warmer!  And the poor ultrasound tech had to sit on a metal folding chair.  I was not all that impressed with that office, but oh well.  I have a new baseline echo-cardiogram on file.

I went back home and got back to working.  I worked straight through till a little after 5 pm when we had to leave for our respective Support Group meetings.

We got there a little earlier than we anticipated, so we took a walk around the pier.  Husband asked me if the absolute worst should happen in this process, and we have to plan for my death, have I decided what I want done?  Well, yeah, we’ve discussed this before.  I want direct in-ground shroud wrapped burial.  There is a place north of San Francisco that does this.  He joked that what, I just fold you into the car and drive you up there?  I told him I had the information before, I just don’t remember where I put it so I will pull it up again and create a file.

Then he asked me about any type of service…  Wow, we’re really discussing this, right before Support Group, where last week it broke me.  Ok, I can do this, it’s life.  I think about that part, a service, or life celebration or whatever.  I don’t know, but I think if this does go south, I think my family will need something.  There will need to be a celebration of life.  Then he asks me where?  Do I have to do this up North?  No, No, it needs to be done here.  The kids are here, you’re here, most of our friends are here.  The rest of the family will just have to be inconvenienced this time instead of us.  They have to come to you and the kids.  You and the kids should NOT have to go to them to celebrate my life and the fact that it ended so much earlier than I ever planned.  Then my husband asked me if he would have a fight with my mother over this.  I told him I don’t care what she wants, this is about you and the kids and what I want.  He said good, if he had to, he’d tell her to F off.  He has my permission.  If it comes to this, he gets the easy out.  None of them (husband and kids) should have to travel because a celebration of life service for me is not convenient for the rest of my family.

Then we talked about him, I’ve always known he wants to be cremated, but he’s never said what he wants done with his ashes.  He said I could do whatever I want with his ashes.  Put them in a urn and keep them on a shelf, scatter him in the waters at Disneyland (which they don’t allow, but I’d find a way I think).  He wasn’t sure about any kind of service or celebration.  He thinks no one would attend but me and the kids.

We finished our discussion before we went in for our Support Groups.

I did admit to mine this week that I came out of last week totally overwhelmed and broken.  They were very glad I came back.

This week went much better.  I’m still pissed that I’m going to loose my F’ing eyelashes, but I can deal with it if I have to…  They were all very supportive and understanding and validated my feelings of being angry about the damn eyelashes.  I know it’s a stupid thing to be hung up on, but everyone’s got something, right?

It was a good night, and despite the apprehension of the unknown, as everyone is different on chemo, I feel better prepared now, and more in control.  My dragon is still there, lurking, but does not have the same hold it had just a few days ago.

Life is still on hold.

Monday October 2 – Meet the Surgeon

Today, we met the surgeon our care coordinator has chosen for me: Dr. Madorin. She is petite, nice, understanding, patient, and straight with the facts. She felt The Lump and agreed it might be swollen due to the biopsy, which is probably why it hurts.

She confirmed everything that has been told to us to this point. Based on the information we have, lumpectomy is still the best option. She said that MRIs are very good at detecting lymph node involvement, and none was detected.

I told her I was worried it was growing fast. She agreed it could have grown a little larger in the past month, but she thought it was more because it was inflamed from the biopsy.

We talked about bilateral mastectomy and referral to a plastic surgeon so I can discuss my options and questions with him/her about reconstruction or breast lift with the lumpectomy to make both sides match.

She said chemo would shrink The Lump, and she has even seen them shrink to nothing. But she warned that even if that happens, the surrounding tissue would still need to be removed to ensure clean margins. She said I may even notice a change after my first cycle.

We talked about lymph node involvement.  I was under the impression that if by the time surgery happened in 5 months or so, my lymph nodes did show signs of cancer, I would have to have a mastectomy.   Dr. Madorin said no, she would make a separate incision in my armpit area and take the lymph nodes from there.  Two scars, but I’d rather have that than a mastectomy if I can avoid it.

We talked about surgery and how I felt a mastectomy or bilateral mastectomy without mitigating factors suggesting these steps should be avoided.  Why would someone want to put themselves through that much surgery if it really is not necessary?  She agreed, and she told us that studies show there is no increase in recurrence with a lumpectomy vs. mastectomy.

If genetic testing results come back negative, I am to call her to schedule a follow-up 6 weeks prior to the last chemo treatment so we can start the scheduling process for surgery and reconstruction/lift with the plastic surgeon.

If genetic testing results come back positive, I am to call her to schedule follow-up 8 weeks before the last chemo treatment so we can start that scheduling process for surgery and reconstruction if I decide to go that route.

Still so many variables.  Taking my cleansing breaths and reminding myself, one day at a time.  Slowly, that grey dragon of anxiety and fear settles and fades.  It’s still there, but not as strong.  It doesn’t try to choke me as often, stop my heart, squeeze my innards.

Life is on hold.

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 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 12th.

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

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.