Tag: Support Group

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.

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 2^nd 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. 

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 358^o!  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 99.9^o 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