Tag: Family

Tuesday, June 18, 2024 – 6 1/2 years

Six and a half years now.  When people find out that I am a breast cancer survivor, they inevitably ask, “How are you doing now?”

What runs through my head at this point is, do I tell them about the constant dull ache in my right breast and side?  That despite my right breast being mostly numb, pressure on it makes it hurt more. Do I tell them that I can no longer wear a bra; the pressure from the band rests on a lot of scar tissue and is too painful for me to manage?  Do I tell them about the plastic surgeon I was referred to early on in my treatment plan? The breast surgeon highly recommended I do this and get to know what my options were.  The breast surgeon also recommended a partial mastectomy, as I had plenty of breast tissue to spare.  Do I tell them how the plastic surgeon pressured me to do what she wanted to do at a time when I was most vulnerable, as well as sick and exhausted from the chemotherapy?

Do I tell them how afraid I was when the plastic surgeon grabbed the bottom half of my right breast and said this is how much the breast surgeon is going to remove, just slice across this area, creating a flat spot right beneath the edge of your areola.  I was in shock.  I had no idea that I was going to lose a little over half my breast when the first surgery was complete.  She showed my husband and I the most horrid pictures of mastectomy scars and full breast reconstruction after radiation therapy that are much harder to complete as the skin does not react like normal skin.  I saw the look on his face when we saw these “butcher job” photos, which were used to scare us into doing what she wanted.  I realize now, years later, that this was how she treated patients who seemed reluctant to make any decisions about reconstruction/reductions or any kind of fixing of their breasts after the initial cancer removal surgery.

Do I tell them that the horrified look on my husband’s face is what sealed the deal for me even though I was still not sure what or how I wanted to fix what would obviously be an imbalance of my breasts?  I never wanted him to look at me the way he looked at those photos.  Do I explain that after the reduction of my left breast and restructuring of the remaining tissue in my right breast, the plastic surgeon pulled the drain from my right breast three days later?  While doing this, despite me telling her the fluid output was still high, I developed a large seroma that put enough pressure on my incisions to leak through at the bottom of my right breast.  When I went for my two-week check-up and told her that I was leaking, she immediately told me I was wrong.  My husband had to point out the fluid dripping down my torso for her to accept that the fluid was seeping through the conjunction point of the surgical incisions.  Because my incision was compromised, she had to drain the area, and it now had to be an open wound.  She used the wooden end of a long cotton swab to poke the small hole open to enlarge it, tearing the newly forming scar tissue.  She was not prepared for the amount of fluid that had built up in my right breast, despite telling me when she opened up the original incision to do what she needed to do to make the right breast resemble the left beast again that there was a very large seroma then, and she collected over 160ml of fluid during the surgery.  How could she not be prepared for a similar amount of fluid buildup?  I had serous fluid all over me as the plastic surgeon and her PA dashed for cotton pads and chucks to dry me off with and to catch the remaining fluid draining out of the hole in the bottom of my right breast where it meets the chest wall. 

Do I tell them about the home health nurse who had to come out to show my husband how to pack my now open wound inside my breast with ¼” wide cotton tape twice a day to absorb the fluids so my wound would heal?  Do I tell them that it took over a yard of that tape twice a day for weeks?  Do I tell them that at my three-week check-up, the healing inside my right breast had slowed to a crawl, and the plastic surgeon said she had to debride the wound to promote healing?  Despite shooting my breast up with lidocaine, when she pressed on it, I could still feel it, not the pressure, the pain.  She again told me I was wrong and went forward with the debridement.  She stuck a scalpel through that hole and proceeded to poke and scrape the open areas of my breast, even with me telling her it hurt with tears running down my face.  She said I was just being melodramatic and to get over it.

Do I tell them that at my 6-week check-up, I still had an open cavity in my right breast?  The plastic surgeon then decided she would have to close the remaining gaps surgically and had her PA schedule the surgery.  Do I tell them that the plastic surgeon had realized by this point I really did not like her or how she treated me, and her PA knew this as well? 

Do I tell them the trauma of waking from that surgery in so much pain that I immediately cried out and had tears streaming down my face and could not remove the severe grimace of pain from my face no matter how much I tried for the two nurses attending to me in recovery?  I was administered pain meds intravenously immediately, but in those few short moments from initial consciousness, administration of pain meds until relief, I wanted to yell and scream at the top of my lungs at the torture I was feeling. I wanted to wail about the traumas I have been through and my anger at the abuse of this particular doctor.  During those first moments of agony, I knew in my heart that the Plastic Surgeon had deliberately held off additional pain med administration prior to releasing me to recovery.  I suffered, I cried, and after two intravenous injections by the recovery nurses, I was finally able to relax and doze as the anesthetics wore off.  Do I tell them that this has left me so traumatized I fear any new surgery?

Do I tell them that I hate my breasts now?  My right breast is visibly smaller than my left, and the left breast has deviations that it never had before.  There is a little notch now in my areola; there is no breast tissue at the conjunction of my incisions, so when you press there, you go straight to the chest wall, which is painful, and there is an indentation close to the left side of my areola that puffs back out at the edge of the areola.  I am ashamed of these changes to my once beautiful breasts.  I now try to hide my breasts with loose clothing and scarves to draw all attention away from them.  Do I tell them that I am terrified of trying to fix them because of the last surgery?

Do I tell them that living with this pain, along with my neuropathy, is exhausting?  Do I tell them that my sleep is now inconsistent, as I wake from dreams easily and then my mind goes to the dark places?  The dark places where my worry of a new cancer and worry of dying without dignity reside.  The worry about how I am now at higher risk for secondary cancer, lymphoma, sarcoma, bone cancer, and lung cancer.  All the radiation I have been subjected to due to Thyroid cancer and now this Breast cancer elevates my risks. The dark places contain all these worries and fears I have for my family if I do develop secondary cancer that defies all treatment.  The dark places are where I stash all this and avoid it during daylight hours so no one catches a glimpse of the tears I shed and the praying I do when I am there.  Do I tell them that when I am too tired mentally to deal with the dark places, I divert my brain with games or reading until I can fall back to sleep again?

Do I tell them of my breathing difficulties?  I had this horrendous cough when I laughed or was breathing hard that developed after chemo.  This cough was a deep, lung-seizing cough that those around me could see me struggling to breathe.  It became the running joke for the five years I dealt with this cough, “What killed Kim”?  Whatever made me laugh last.  Do I tell them how many times this kept me from my family or friends because I just didn’t have the energy to struggle to breathe?  Do I tell them that it took one of my friends to put her foot down and tell me to ignore all the doctors who were saying this is part of my neuropathy and demand a referral to a Pulmonologist? 

I did this after struggling with this cough for over 5 years.  I was diagnosed with severe Chronic Bronchitis and now use an inhaler twice a day.  Do I tell them how I love that I can laugh and do cardio without feeling like I am going to die, but there are times that I hate the side effects, phlegm accumulating in my throat, making me cough and hack at the most inopportune times?  I avoid talking on the phone as much as possible because I never know when I will have to clear my throat in someone’s ear so I can talk.  In addition, most of the time, I now sound like a 40-year, 4-pack-a-day 60-year-old smoker.  Most of the time, I do not mind as I have the ability to laugh freely again, and I love being able to laugh.  I take these side effects from my inhaler in stride, but on the off occasion, I am self-conscious of how I sound.

Do I tell them of the sorrow I carry with me for the loss of friends I’ve made in this new Breast Cancer community I find myself in?  The grief remains and is stashed in that dark place with all the other things that I do not want to see all the time.  Occasionally it comes out when something reminds me of one of “my girls”.  It’s not as scary as so much of the other dark place stuff is, but it reminds me that this life is fleeting.  Then I remember the good times we had together, say a little prayer and thank them so much for their friendship, and tell them I still love them and miss them, put my grief back into the dark place, and move on once more.

Do I tell them that I still mourn for my pre-chemo brain?  The one that let me be a good teacher to those just coming into the industry I work in, let me talk and walk at the same time, the one that allowed me the brain power to reprioritize in a fast-paced environment, stop what I was working on, help with an emergency, and be able to pick right up where I left off brain.  That brain.  That brain is no more.  If I am trying to order an Uber, I cannot tell you what I am doing or where I am in the process.  My brain does not allow this.  Do I tell them how many breakdowns I had, tears shed in frustration because I could not communicate before we realized this was the new “normal”? 

How I tried to go back to work that I loved but I could not manage it, my brain would not accommodate quick decision making and reprioritizing, no matter how many tricks I employed to help manage an ever expanding work load, or try to come up with out of the box thinking.  My brain is very linear now.  I have to stick with one thing at a time for the most part.  I have gotten better than it was right after chemo.  I can now knit and watch TV or talk, but I do make more mistakes.  It’s taken a long time to retrain my brain to find mistakes in my knitting, but even then, I have a very hard time finding them.  I have probably un-knit and ripped out more crochet rows of work than I have completed since my cancer treatment started way back in late 2017. Because my brain does not work well under high-stress situations, it freezes and does not allow words to come out of my mouth.  I can think of them, but in a high-stress situation, I cannot say them.  This has led to me stepping back from work I loved to doing what I can do, I help with data entry at the company I worked for when I was first diagnosed.  They are understanding and know that my body and brain no longer work like they did pre-cancer.  It’s a good fit, and I am very lucky to have such generous people in my life.

 Do I tell them of the loss I still feel for my pre-cancer innocence?  The time when I never had to know cancer statistics, chemotherapy protocols, infusion intervals, nausea management, and radiation burn management?  Do tell them I long for those days of inexperience on bad days, when dealing with all the minor pains and the fatigue that comes with it, when I get home from a 6-hour work day so exhausted I fall asleep on the sofa almost as soon as I sit down?  How going to a yoga class, then shopping and putting away my groceries is a basic day.  Doing more than that on a Saturday leaves me in so much pain I can’t sleep.  The Saturdays I push myself to meal prep for the week after yoga and shopping leave me in so much pain by the end of the day I cannot sleep.  And this is pain that is not managed with analgesics; it’s neuropathy pain.  Different medications that upping the dosage on a bad day are not an option.  I have to lay in bed as I try to self-soothe the burning, stabbing, hot daggers of pain moving through my feet and hands until exhaustion finally overtakes me, and I am asleep and no longer feeling the sensations from chemo-damaged nerves.

As I formulate my answer, all this and more quickly runs through my head.  Then my heart pipes in, remember how thankful you are to be alive.  Tell them how much more you appreciate your friends and family.  How lucky you feel to have so much good in your life, your husband, your children, parents, brothers, friends, and co-workers.  The generous amounts of support you received during and after, to this day, from so many.  The doctors who did the best they could to keep you alive, keep you here where you want to be, with all these wonderful people in your life.  The beauty you see every day.  How you watch for the little things to bring a smile to your face now. 

How you love it when the setting sun lights the back patio, with the blackbirds coming to sing the sun down.  How you relish your drives to work during the week so you can see any new happenings along the way, like the Blue Heron that was standing in the park, warily eyeing the people walking and jogging, the dogs enjoying their time to explore along the walking path with their owners, and probably wondering why in the world would the Canadian Geese be willing to get so close to the humans.  Or when I catch squirrels and crows gossiping together.  I love those sightings. 

Tell them about how you love people watching in the moments you have while at stop lights, seeing the proud, tall, and slender black woman who gracefully, powerfully, and unapologetically strode down the street with an eye-catching afro of white-blond on the bottom half and a rich dark brown almost black top half, that looked at me with a “Whatchu lookin’ at white girl” attitude as I looked at her with a big smile on my face.  If I had not been three lanes away from her I would have rolled down my window and told her how much I loved her hair and her physical I don’t take no shit attitude.  My heart reminds me that I have so much more good in my life than bad, so I don’t need to tell them of all my pains, frustrations, and fears. 

My answer is what they really want to know: “I am good.  No evidence of disease, and I am ever so grateful to be alive.”  This is the truth, and I am so thankful they do not have to know the reality of being a survivor of an aggressive form of cancer that was treated aggressively to keep you alive, not necessarily “whole”.  I am a new type of whole; my soul is intact, and my heart is healing. My family remains my biggest fan club, and I couldn’t be happier.  When I utter my words,  “I am good…” they have no idea of all that the word good contains.  But let them live in the bliss of ignorance; everyone does not need to know what it takes to survive this kind of cancer. Only those select few who understand the battle waged and won.  Someday this will be a thing of the past.  There will not be battle scars.

Life is counting your blessings every day

October 1, 2020 – Forgetfulness and questions

I don’t remember what I was going to write about. I put it off too long and now I forgot. I do know that I wanted to write about the question “If you could have a meal with anyone alive or dead, who would it be?”, after I wrote about the subject that I no longer remember I wanted to write about. Thank you chemo, menopause, age, or all of the above…

I may have wanted to write about my latest Oncology appointment. The one that starts the process for my next MRI. Dr. Ciarolla, for the first time, did a physical examination. I have been experiencing tenderness in the left breast, around the area they are watching the changes on the semi-annual MRI’s. I don’t really feel anything there, and Dr. Ciarolla said he didn’t feel anything either. But tenderness is what led me to discovering Blink finally. So, I try not to hold my breath, and wait and see.

Maybe I wanted to write about how much I miss seeing my extended family. How the pandemic has made me feel so isolated from all of them. We see the kids as often as we feel we can without jeopardizing our health; especially since we have been making ourselves available to our friend, and neighbor, Moses, who is now battling his own cancer diagnosis. Occasionally he has needed help with rides or just a visit to help him through the hard times. He recently spent a week in the hospital with pneumonia. He was not happy that this has added a delay to his treatment plan, which I totally get! You want your treatment plan to go as planned. Any bump in the road leaves you feeling uncertain and scared. How bad is this bump, as it is almost always medical in nature, and does this mean my cancer has spread, or my treatments have caused other insurmountable issues, and, and, and…

Your inner dragon starts whirling in terror, and you cannot breath, your heart wants to stop, you have no energy to deal with the situation, and yet you must. It’s so overwhelming, and then you cry, because that is the only thing left in your body to help you deal with all that emotion swirling and curling, being flung left and right by your dragon. And that makes you feel stupid because you are crying, and that exhausts you even more. It’s a vicious cycle, and it’s ok to be afraid, and cry, and exhausted, frustrated and physically weak. It’s all part of the process. Some have no issues and others drown in the emotionally eddies. Most of us are somewhere in between the two extremes. It’s easy for me to sympathize with Moses, been there. I may not have contracted pneumonia, but I had my own delays and hurdles.

Maybe I wanted to write about celebrating our grandkitty, Winky’s second birthday. I know celebrate a cats birthday?!?! But that is exactly what we did. Yet another excuse to see the kids. She loved the special food she got for dinner and her “Uncle Jordon and Aunt Kelly” got the win for favorite birthday present. Although, I did get lots of love for the catnip buds, better than already flaked catnip. Such a happy little one-eyed cat for the weekend.

Maybe I wanted to write about going back to work as a temp for my old boss, part time. Gary had a need, and I would do just about anything for Gary and Kyle. They have been so good to me. So I am working part time, until they are fully staffed again, helping them out. But there is a kicker to this… I was a Director of Operations, making a six figure salary before Blink. When I came back to work for Gary after treatment was over, and I was ready to try my hand at working again, it was for far less then I had been earning before.

Then I had the opportunity to go to NEXT, which I took, back to that six figure salary. Only NEXT was not at all what I expected or dreamed, and when all was said and done, I realize I don’t want to be in that situation again. I don’t want to be in charge, making decisions, being the responsible one. It’s too much after Blink. My brain still does not process things the same way anymore. I still have difficulties with multi-tasking.

Simple things I can do, but the more difficult the task, the more concentration I now require to complete the task, the less I am able to separate or segment my thought processes to be able to comprehend when someone is talking to me and be able to respond and still keep my place on the other task I am working on. Example – knitting, mostly muscle memory, right? I can knit a basic pattern and watch basic TV shows or participate in my Support group, but if the conversation turns and requires higher thinking power, higher concentration, I can, and have, messed up my basic knitting pattern. This was something I never had difficulty with pre-chemo.

This leads me to now, going back to work as a temp for Gary. I have gone from a six figure salary to $25 an hour data entry clerk. Once I am done helping Gary, I know I can go back to the OCU (Office Clerical Unit of Local 63) hall and pick up temp jobs from there for more than $25 per hour, but it kind of stings my ego and my heart. My worth is no longer what it was. I am no longer worth that six figure salary that I worked so hard to earn. The years spent learning and growing in my industry to get me to that place where I could be that responsible person, making the hard decisions. Not that I want that place anymore, I have more important things to do than be that responsible for someone else’s business, but it’s that little sting in the gut, my worth has fallen because of Blink. I am no longer worth that six figure salary.

I know my value is still worth far more than any salary could provide, but it is still a small little hurt to my ego as to what Blink has cost me. I enjoyed my career, and all the people I have met, including the many I can call friends, but knowing that part of my life is over now still pangs a little. Part of me wants to still try to regain that part of me, but most of me, the deepest parts of me, does not want that anymore. So the sting is just small, but it’s still there.

Could it be I wanted to write about all the Facebook “memories” that would pop up everyday from three years ago. The memories of the days leading up my discovery of Blink. The days of innocence. The days of bliss. Not knowing what was lurking in my right breast that would turn my world upside down. The diagnosis that would bring me to the here and now. To never be innocent again, to never be able to see the world quite the same. I miss that innocence, that bliss, that feeling that everything was so right in my world. Oh, there was the occasional calamity, but I always knew they were surmountable. The diagnosis of Blink took all of that away. Nothing like when I had Thyroid cancer, as scary of that was, this is a killer. Knowing this, having this lurk over me for the rest of my life, that, that is what has changed, and I miss the before. I miss that girl, and everything that was going so right for her.

I still love myself, not the same way as I did then. I have a different appreciation for life, family, experiences, love, hope and joy. I am glad I have these new perspectives, but as I noted above, those rose colored glasses were so much fun.

Now for the one thing I do remember I wanted to write about. When prompted journals or someone asks you -” If you had the chance to meet with anyone, dead or alive, who would it be and why?” I’ve always had some inklings of who I’d want to talk with, share coffee or tea, break bread with, but it has always felt so trite and almost rehearsed. With the passing of Ruth Bader Ginsberg, I finally had a true yearning to have that hypothetical meeting with a person “dead or alive”. I would love to meet RBG, have tea with her, talk of life, love, equality, justice, religion, and jokes. On a recent night, as I was pondering this, I had the feeling of this soft little hand reach out to hold mine. For some reason I knew that she was with me briefly, just to let me know she knew me and understood my sudden yearning to have met her. Then her presence was replaced with my grandmother, my Nane. My Nane who I know watches over me, but rarely does she make her presence known. That night she did. She sat with me for a while, to let me know all would be as it should be.

So, I go forward, over the next two weeks, not holding my breath, with my dragon tightly curled into her little ball, as I wait for that MRI appointment. Knowing all will be as it should be going forward.

Life is dealing with the new future

Sunday, June 2 – A little catch up

A few months ago I happened to read a published text thread about a person who’s father had died when they were 18, and mom had scattered some of dad’s cremains here and there and was holding on to the rest until this person had picked out a nice holder for their portion of dad’s ashes. When this person finally found the perfect container and went to mom for a small portion of the cremains, Dad’s ashes had solidified. Long story short, there is this hilariously long text thread about Dad’s solidified cremains. (linked to the published text thread)

That lead to us discussing my father in laws cremains that my husband had scattered some over the VA Cemetery per Dad’s wishes and we’ve been holding on to the rest to scatter where he asked in his will. Life has happened so Dad’s cremains have been stored in a box in our bonus room for a while now. Recently Robert checked Dad’s cremains only find that yes, they had solidified. Makes me want to find the original publisher of that text thread and ask them what actually worked!

The reason Robert had checked on Dad’s cremains was we needed to clean up the bonus room so that Heather, Jose and Joseph could move into that room temporarily after they bought a house in Bakersfield and needed to wait to complete their move until Joseph was out of school.

We enjoyed all the time we were able to spend with the Grandson, the Grand Kitty, and our kids, even though they spent most weekends preparing their new house for when they would get to move in permanently. One weekend it was just Jose up at the new house, and the neighbors came out and asked him if he was the paint guy. We had a good laugh over that one and have now nicknamed him “Jose – The Paint Guy”.

Winky made herself quite at home in the time they spent at our house….

We took a trip up north to re-start our annual trips to our favorite winery with my dad and mom#2. This year the spring members’ event at Schramsberg was supposed to be in The Grove, which is one of our favorite spots, but Mother Nature had other plans. It rained that day so we celebrated in the caves instead. We enjoyed the time in the caves tasting the new releases and food, and of course wine purchased.

Also in the past month Kelly, our soon to be DIL, passed her state licensing exam and is now a fully licensed Doctor of Psychology in the state of California. We’re so proud for her and this great accomplishment. Jordon and Kelly can now concentrate on planning their wedding for later this year.

The weekend before the kids last week in our house, Joseph was going to spend Sunday with Grandpa, while Heather and I joined the rest of the bridal party to go bridesmaid dress shopping with Kelly and her mother. Joseph decided that spending the day with Grandpa included him helping Grandpa with the chore of washing our bed sheets. Because I dye my hair purple, and purple dye is not permanent, it rubs off on my pillow case. As Robert was pre-treating my pillow case with stain remover, Joseph asked him what the purplish pink stains on the pillow case were. Robert being the quick witted joker he is, told Joseph that sometimes at night Nane’s brains leak out her ears and stain the pillow case. With a horrified look on his face, Joseph them asked Grandpa if it hurt when my brains leaked out my ears. Grandpa told Joseph he should ask Nane about that.

Stained Pillowcase

Heather and I were in their room when he came in and asked me if he could ask me a question. He whispered the question at Heather and I were in their room when he came in and asked me if he could ask me a question. He whispered the question at first and I could not hear him, but I could see Robert hiding in the kitchen doorway with his shoulder that was visible shaking from him stifling his laughter. My first thought was “Oh lord, what has he said now?” I asked Joseph to speak up a little more so I could hear his question, and he repeated his question “Nane, does it hurt when your brains leak out your ears at night?” Heather was the first to react to the question, asking Joseph why he would think that. Robert could not hold back his laughter anymore and between the three of them, Heather trying to act indignant, Joseph confused and Robert laughing, I started laughing too. Between Robert and Joseph we got the story behind the question and I looked at Joseph with a smile on my face and asked him “What color is Nane’s hair?” He looked at my head and as he was saying purple, you could see the light dawning on his face that he had been had by Grandpa. I confirmed that yes; the color on the pillowcase is from the dye in my hair rubbing off during the night. Joseph did laugh then. Later in the day after Grandpa had continued to joke with Joseph about my brains leaking out, Joseph finally said to Grandpa that it was not funny anymore.

My foot is healing up well from my wart removal surgery, and the current dosing of Klonopin is working well in controlling the worst of the side effects of my neuropathy. I changed it up a bit, two days full dose, 1 day 1/2 dose, 1 day full dose, 1 day half dose and start over.

I also agreed to talk with a new trucking company that had been reaching out to me for a few months through LinkedIn about a employment opportunity. I ignored the first messages from the company and several head hunters trying to entice me with vague job descriptions and promises of great benefits. After a third direct attempt from this company with more information of what they were looking for and what they are doing currently, I figured the universe was trying to tell me something. I responded to the LinkedIn message.

This lead to a phone interview, which led to another, and then a in person meeting. I can’t really say the first in person meetings were an interview per se, more of an exchanging of ideas and what they want and what I want back and forth. This lead to other in person meetings and them practically throwing me a package that listed their medical, dental and vision plans along with a cost sheet before I made a decision to commit to them. After thinking about it I agreed to let them make a formal offer, which turned out to be an offer I just could not refuse.

This was not an easy decision for me to make, as my current employer had been so good to us, to me. When I went to work for them in 2011, I really did think this would be my last job before I retired. But again, the Work Gods had something else in store for me. I am excited to be starting this new adventure, and a little scared at the same time. But if it doesn’t scare you a little, it’s probably not worth doing.

Last Friday was the last day the kids were here. Heather’s last day of work at the pet hospital was last Thursday. Friday May 31 was Joseph’s last day of school. Grandpa was up and cranked Alice Coopers Schools Out for Summer while Joseph was getting ready. It only took him a few minutes of listening to the song before he was singing the lyrics while brushing his teeth.

Heather packed up the last of their belongings, except for their bed, and headed to Bakersfield with Winky (grand kitty) about the same time I headed into work. Jose picked Joseph up from school and they went to enjoy the carnival that was taking place at his school Friday afternoon. They headed to our place about 8pm and picked up the mattress and then they were gone too. We’re empty nesters once again.

Saturday found me heading into Long Beach to catch up with old co-workers from APL. We try to have an APL Oldies reunion at least once a year. It was good to see some of the people I miss dearly, and catch up with them once again. The last time we went I had no hair. Everyone loved my new purple hair.

Life is trying new adventures

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

Saturday, October 27 – Dreaming of my ancestors

For two nights in a row now I have dreamt of family.   Thursday night I had vignettes of various scenes of my family and extended family celebrating various occasions. It started with all my family, and when I say all I mean ALL, celebrating my younger cousin and his new bride. It was around a first home search/purchase or something like that. We ended up with dinner at a restaurant. We were all in a private room in the back. All of us sitting around a huge table, talking, sharing, and laughing. Having a wonderful time, and I realized that my now deceased maternal grandparents were watching over us, happy, with a sense of “Look what we have created” accomplishment.  It brought me a feeling of ease knowing my deceased grandparents were watching over us.

I went through several other scenes with family, bonding, loving, sharing. I don’t remember much, just the wonderful feeling of togetherness. The last vignette was with my sister/cousin, her boys, husband and mom (my aunt). My uncle passed away years ago from malignant melanoma. My uncle was a republican. One of Deda’s sons was extolling to us the virtues of being a republican – fiscal responsibility, 2nd amendment rights, smaller government… and so on. Then  he told us that all men are republicans and all women are democrats and that is why men and women do not understand each other.  He then announced that when he grows up he is going to be a Democrat!  We all clearly heard my deceased uncle say at that point “over my dead body!” And then he (my uncle) laughed. We laughed as well. This is when I woke up giggling.  Nice way to wake up!

Last night I specifically dreamt of only my father’s family.  I had vignettes of family talking, drinking and laughing all over various areas of the San Francisco Bay Area.  I ended at my great grandparents house, but not one I remember.  This house was at the top of a hill that I could not tell you where in The City, but it was a typical turn of the century single family home – tall and skinny, one abutted to another, the whole length of the street.  The front doors on the second level with stairs up from street level.  Only the stairs up to my great grandparents home we’re narrow and steep with a very low wrought iron railing. My brother called me while I was climbing those stairs, joking and teasing me all the way up. I woke as my great aunt was taking me in to see my great grandparents.

Am I dreaming of my family past and present because I find family a balm to my soul. My family brings me peace, love, compassion, and harmony.  I feel safe and more whole when I am surrounded by my family, amid the chaos, laughter, tears, and yelling, I will gladly sit and watch all this happen around me as it fills my heart and soul.  But why my past family?  Why the family that has already passed?  I know some of my antecedents watch over me, help guide me, keep me safe. Is this why they are in my dreams right now?  Helping me to find my joy again?  Or are they here to help me accept something else in my life?  I’m not sure, but having the dreams the past two nights has been an easing of my stress, a balm to my soul, and some healing to my heart.

Life is accepting life as it is everyday

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.

Saturday, September 30 – Disneyland Finally

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life is picking your battles

Tuesday 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.

Monday September 25 – Oncologist

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

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

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

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

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

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

Part 1:

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

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

Part 2:

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

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

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

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

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

Life is preparing for battle