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

December 21, 2021 – Time flying

With the pandemic happening I find myself losing track of time so much. Then I feel like I need to rush to get as much done as I can in the life I have left. I keep having this feeling that I need to make sure my family is prepared for me to not be here anymore. With this feeling I also notice every little change in my body. Color changes in my breasts and arm pits. How my lungs feel; how my cough is and whether it is changing. I’ve noticed grey spots in my phlegm when I have any to cough up in the mornings. I notice every new little pain and tight spot.

I also notice all the little things in my life, how my husband does things around the house that helps me. How my kids continue to grow in their adulthood. My grandson and how he changes every time I see him. Which birds like to hang out in our trees; how the changing of the seasons changes my views when I leave the house; go to work, or run errands. What wildlife I see on a daily basis. How frequently the owls visit our neighborhood at night.

I notice the changes to the flowers and the trees in my neighborhood. I notice the changes in my neighbors as they walk their dogs. I notice the hummingbirds and how some have changed their territories.

I notice my dreams are changing too. I dream more of old friends I have not seen in ages; of having gatherings with them to celebrate life. I dream of family past and present. I dream of things we did and things I would like to do.

I wake up thankful for every new day; with that nagging urgency to get everything done.

I don’t know why that urgency is there. All my tests are still showing everything is clear. I have concerns I have voiced to my Oncologist, but he doesn’t seem to think they are real concerns and treats me as if I have nothing to worry about.

I have lost people in my support group because they were told not to worry about subtle changes. I have lost people because doctors didn’t follow up. I will continue to lose people because their cancers have advanced beyond curing. They will live until the advances in medicine can no longer control their cancers. I am thankful for everyday they have to live and grow until that point.

Despite my underlying nagging worry, I live each day. I enjoy all the things that I come across in my life that bring beauty and I strive to be productive. I love having my husband make me laugh; and my friends in my life that remind me life is beautiful.

I am looking forward to crossing another item off my bucket list. My mom has invited me to join her on a cruise to the Bahamas. Despite that there is a new variant to the Covid-19 virus out there I am going. My dragon whispers to me daily – live life now. Do all the things you want to do NOW. So I am embracing life to the fullest NOW and enjoying it all.

One of the girls who was in support group, but when the pandemic started and we went to ZOOM meetings she stopped participating, she is dying. She has Triple Negative Inflammatory Breast Cancer. She made the comment to another in our group “My world is becoming smaller”. She meant that what she focus’ on becomes a smaller circle every week. The therapies are no longer working and the side effects are not worth the little help they provide. That statement resonated with me. There are times when I feel like my world is slightly smaller as the things I am willing to let into my world are becoming more limited. With my little dragon whispering in the background, to let some things go as they are not worth my efforts.

For my birthday this year I decided that my efforts would be spent on communing with rescued farm animals, with an emphasis on cows. There is a rescue barn close enough to where we live that we were able to go visit. I enjoyed all the animals I got to interact with, but the cows were the best. Many don’t realize that cows are generally giant dogs, that want to be petted, brushed and sit in your lap. Obviously they don’t fit in our laps, so a compromise is made. They lay on the ground, we cuddle up to them and then we commune together. It’s a peaceful, restful feeling. It filled me with joy.

As we prepare for the final holidays of this year, I am constantly reminded how much my family and friends mean to me. I am thankful we still have time together and I relish each moment I have with them all.

Life is beautiful and fleeting

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

August 13, 2020 – My Tribes

I signed up for these daily self improvement, enlightenment and self realization essays from one of my favorite web sites – DailyOM. Two days ago as I started to read that days essay, within two sentences I had tears starting to form, by the end of the first paragraph, I was crying, I had found my tribe. Or at least one of them, and it only took fucking breast cancer to get there.

The title of the essay was “Finding your Tribe” by Madison Taylor. The first paragraph: “Part of being human is the search for an individual identity. Bound to this strong need to establish a unique persona, however, is an equally intense desire for acceptance. It is when we find our individual tribes that both are satisfied. Our tribe members are those people who accept us as we are without reservation and gladly accompany us on our journeys of evolution. Among them, we feel free to be our imperfect selves, to engage unabashedly in the activities we enjoy, and to express our vulnerabilities by relying on our tribe for support. We feel comfortable investing our time and energy in the members of our tribe, and are equally comfortable allowing them to invest their resources in our development.”

I have several tribes that I love being part of, some are closer than others. But the one I need the most right now, the one that I was thinking of while I was reading this essay, is my Breast Cancer Support Group. They are the acceptance I need still, even coming up on three years past my initial diagnosis. Almost two years past my active treatment. And 9 months since I was let go from my job. They are the support that allow me to voice my concerns for my future, the part of me that has a calm but fearful knowing what my future may hold for me. They listen without judgement, with no feedback that I must think or act differently. They love unconditionally, with my flaws, my hopes, my dreams, my triumphs and my weaknesses.

I love all my tribes. The women and men I formed connections with through my work, the strong and agile thinking people who have upheld me through my career. These intelligent and loving individuals who challenged me to be better, to grow and learn. These people, whose friendships I still cherish, even though I don’t get to see them or interact with them as often as I would like, I still feel my connections to them, and when I least expect it, they are popping up in my world, to remind me that I still have them with me.

Then there is my faire tribe. The people who accept my nerdy, dress up and play side. The part of me that loves to play make believe, and sew fantastic costumes so I can feel pretty in my make believe. They give me an extended family to love and be loved. The ones who cheer me on in my normal life, even though I only really get to be with them during my “fantasy” life. I love them and I am ever so grateful that I have them with me always. Even during this pandemic that keeps us physically apart, I have them with me, a Facebook post, a message, a phone call, an email away.

And of course there is my family, my blood tribe. The ones I am connected to through blood and bone, spirit and familial attachment. The ones I know will always be there, holding me when I need it most. Knowing I am holding them when they need it. The ones I have gone through the highs and lows of life with; the ones I have argued with and still come back to their love. The ones I have hurt beyond belief, but have forgiven me when my pain and confusion in life made me lash out in such horrible ways. The ones who understand me the most, and accept me with all my other tribes in tow. I have brought many of my tribes to my family and they have been accepted with open arms, because they are my tribes. I love my family for this, for always accepting my tribes when I bring them home with me. I love that my family loves and accepts me always.

I love my tribes, all my tribes, and right now my Breast Cancer Support Group, even after all this time, is the tribe I currently rely on the most. And I am ever so grateful for this tribe.

Life is Finding Your Tribes

August 5, 2020 – Love, Life, Loss and the Sword of Damocles

I know it has been a while, and so much has happened. Jordon and Kelly got married at the end of September; we attended a large family reunion from my mother’s side of the family. I was let go from the job I thought I loved so much this past November. We decided despite the lack of income from either of us, our Disneyland passes would be renewed. We celebrated Thanksgiving at our house with my parents, my brother and my nephew; we went to Disneyland the next day.

My birthday was mostly spent at Disneyland. We managed to secure lunch reservations at Carthay Circle in Cal Adventure. The weather forecast remained cloudy and chilly, as we made our way to the park and most of the way through our lunch. Then it started raining, then it poured. Because the weather app kept saying no rain I didn’t bring with us the rain slickers we had purchased the week before. By the time we finished lunch and made a circuit around Cal Adventure, everyone was trying to find shelter wherever they could. I purchased two new rain ponchos and away we went to check out Disneyland. Everyone there was also looking for respite from the rain, and there we were, me driving through every puddle we could find in my ECV and Robert behind me jumping in the same puddles. Turning fifty-five was fun, but eventually I got cold and we went home.

Hanukkah was celebrated and our gift exchange theme this past December was “Batteries Included”. We had quite a bit of stealing of gifts happening this celebration, and I have to say I made out pretty good this year, light saber with sounds stolen from the first person who stole it. Then it was locked with me. 😀 We re-gifted it to Joseph for Christmas, made it even better.

We raced back from Hanukkah to celebrate Christmas Eve with Robert’s family and BBQ from Naples Ribs. Our tradition now that we host Christmas Eve. We had a wonderful time with Robert’s family and made a date to have Super Bowl together and then “Christmas in July”. Looks like we will be seeing each other more than once this year.

New Years found us up at my parents house. Dad and Mom #2 had food poisoning the day we arrived. Then Robert ended up with a 24 hour flu bug on New Years Day. Fever, body aches, everything. We ended up staying another day. We drove back home the Friday after New Years and Robert felt pain in his bottom. By the time we were home he realized he was experiencing another peri-anal abscess. We took him to urgent care Saturday morning, hoping we could hold off the worst of the abscess until Monday, and start the request for referral to the colo-rectal surgeon Urgent Care doctor was all too happy to provide both and we went home with antibiotics. By that night he was in so much pain I decided we were going to the ER in the morning.

We headed to the ER bright and early Sunday and despite not many people being there, they took their time getting a CT Scan done to send to the on call surgeon for evaluation. By that time Robert was saying his pain level was beyond 10. Football had started by the time the ER doctor consulted with the on-call surgeon. The surgeon decided that since the abscess was only a little over a centimeter he could tough it out until Monday or Tuesday when the referral is approved and he could be scheduled into the office.

We were both incredulous that this was happening. Damn surgeon didn’t want to stop watching football. Robert was now just bed ridden and he was starting to have problems with defecation and urination because of the pain. Monday the referral came through and the surgeons office could see him late Tuesday afternoon. We hobbled him into the surgeons office and the surgeon took one look at him and told him he had to go back to the ER. This could not be taken care of in the office as the first surgeon had determined. He would call the ER as well as the surgeon on duty to advise them Robert was coming over and would need to be admitted for surgery.

We headed back to the ER, now I was livid. They quickly got Robert back into a bed in the ER, even though the ER was beyond full. They did another CT scan and within three hours had him up in a room. Of course it was in the middle tower the longest walk for me no matter which entrance I went through. They added him to the surgical board to be squeezed in as soon as possible and he was told no food or drink after midnight. My dear friend Linda brought him a burger and fries from Five Guys so he could finally eat something. Once he was fed I went home to get myself something more to eat and to feed the cat. I was back at the hospital bright and early the next morning only to find they still had not scheduled a time for his surgery to relieve the abscess. Close to noon, his nurse told me they finally had a time scheduled – 8pm that night. He was napping, so this was not going to go over well when he woke up. His abscess had grown from a little over 1 cm to over 6 cm.

Surgery was able to be bumped up a little earlier, so he was in surgery by 6:30 that night. Surgeon told me all went well and he should be feeling better soon. Now that he had a second abscess in the same spot she was warning us this could become a common recurrence and there is not much they can do about it.

It took almost three weeks but he was doing much better and able to sit normally again.

Back to the wedding; we were all so happy to celebrate last year. The rehearsal was the Thursday before the wedding, which also happened to be the same day as my six month imaging. This imaging was an MRI. My new Oncologist is more strict on the follow up than my last oncologist, which leaves me with a more secure feeling that we will catch any recurrence early, or at least earlier. I went to the imaging on my own. This is my one year check up since the end of active treatment. Two years since diagnosis. It will all be good, no worries! And the wedding is in two days. It’s all happiness. Get this imaging done and move on with life.

As we’re headed to the wedding site for our rehearsal time, Heather, Jose, Joseph, Robert and I all in Jose’s work truck, my phone rings. It’s the main number from Torrance Memorial Hospital. Also where the breast diagnostic center is located, where I had completed my MRI earlier that morning. The MRI detected changes in my left breast. They are scheduling me to come in for ultra-sound on Monday. The cab of the truck gets very quiet as I schedule this appointment for the follow-up ultrasound. Heather reaches back to hold my hand from the front seat. Robert looks at me across Joseph who is seated between us in the back bench seat. My dragon roars, NO NO NO, it’s not time yet! We are prepared, me and my dragon, for three years, five years, maybe as many as ten, but we are not prepared for 2 years.

My dragon screams within me, raging, crying, ranting, no, no, no, not now, not at this happy time, not as Jordon and Kelly are getting married, going on their honeymoon. Not when we have a giant family reunion from my mothers side of the family in two weeks up in the bay area. I calm my dragon, it’s nothing. It will all be fine, it is too early for this, we both know. My dragon reluctantly curls back into it’s ball, but is very unsettled in her corner of my gut. I tell her we’re not going to think about this until Monday. We’re going to celebrate the union of our son to the beautiful Kelly who we adore and welcome into our family.

We all agree nothing will be said, but my dragon still tumbles and flutters away, not willing to settle completely. I am determined to enjoy this weekend. Nothing is said at rehearsal, nor as we head to the rehearsal dinner. I am able to settle my dragon and enjoy the rehearsal dinner with the bridal party and both families.

Friday we checked into the hotel in Huntington Beach close to the wedding venue after meeting up with Deda, her family, and my brother and nephew at Disneyland for a few hours. After a relaxing night in we woke up early to prepare for the wedding. We had to be at the venue by 1:30pm. I booked a makeup artist to come and do my face and hair, and had a wonderful time being made up for the wedding. The artist was a darling woman that I thoroughly enjoyed working with, and chatting about her life as well as mine.

When it came time to get dressed, I had a good laugh over the stick on bra I had purchased to wear under the backless gown I had found that was just lovely as a Mother of the Groom dress. I could not get the cups to evenly stick to my boobs, and pulling it off… OMG, my poor right breast definitely did not like that. So after several attempts of errors and laughter, I decided it was not worth it and went without a bra. Robert and I were both ready and scheduled an Uber to take us to the venue. As we waited for the Uber to show it started to sprinkle. We both knew Kelly would be totally upset by rain on her outdoor wedding day, despite that rain means good luck. It sprinkled the whole 5 minute ride to the venue and then the sun came out.

We checked in with everyone, the bridal party in one room and the groomsmen in another. Grandpa helped Joseph get dressed in his tux, while I ran as a go between for Kelly and Jordon. Kelly had passed her state boards and Jordon had a congratulations card for her on this accomplishment. But it was their wedding day, and Kelly was stressing out. As all good brides manage to do on this special occasion. Kelly and Jordon had decided their gifts to each other would be letters on how they feel about one another. Kelly had me deliver her letter, and I came back with a congratulations card. I went back to check on where Jordon was with his letter. He had it all typed out, but wanted to write it out for her. Jordon being Jordon, of course was very behind in this matter. With many distractions coming his way as the photographer tried to keep him on schedule with the list of photographs that were supposed to happen prior to the ceremony.

I noticed he kept losing his place on his laptop and would have to go back to re-read where he was to continue. I stepped in and told him I would dictate and he would write. It still took time with some mishaps and laughter, but he finally completed his tome (at least 7 pages of handwritten text), sealed it up with a card and I was able to deliver his letter to Kelly. Their picture schedule was behind, so some pictures would have to happen after the ceremony. The wedding planner was wonderful at helping Kelly destress and kept the parties on schedule and got us all ready for the ceremony.

The ceremony was beautiful and no one was the wiser when the bride and groom disappeared for a while to take those pictures that were missed prior to the ceremony. It was a wonderful party, and Robert’s speech turned out perfect, despite the fact that he miss-spoke Kelly’s name at the beginning, with much laughter and tears. He shook so much my sister-in-law asked my brother if Robert had Parkinson’s. Nope, just nervous speaking in front of all those people.

I did tell my secret to Deda. I had to let out some of that dragon anxiety and talking with Deda helped me quiet my dragon down and allowed me to enjoy the rest of the wedding and dancing.

The wedding ended at the scheduled time and I walked in to find Kelly’s mom unable to undue the elastic button loops on the back of her dress, so I stepped in to help get Kelly out of her dress. The rain held off until we were packing up the last of the wedding gifts and the bride and grooms stuff. We all headed back to the same hotel, and met up with Dad and Mom#2 for a drink before heading off to bed.

Sunday found us taking our time packing up and then heading over to Disneyland for a bit of people watching before meeting up with Dad and Mom#2 as well as Jordon and Kelly for dinner at Napa Rose before Jordon and Kelly left for their honeymoon and Dad and Sue headed home to the SF Bay Area. All in all it was a wonderful weekend and we’re so happy the Kelly is officially now a member of our family.

Monday I went for that ultrasound, and they could not find anything in the location where the vascular changes were detected in the MRI. So good news at that point, but the recommendation was instead of a mammogram in 6 months I have another MRI. Sword of Damocles….

As much as I wanted to say I had dealt with my loss of Kelly from my support group, I had just touched the tip of that journey. Having my MRI come back with a “spot” to watch, drew me right back into my grief and my memories of Kelly. I threw myself back into work, and tried to forget all this. But I also felt like I could not hide this from my family. I hate being blindsided by medical news so I felt like I needed to tell them all about what is going on. We had the family reunion a few weeks after the wedding, and we shared a two room suite with my mom. I was able to have a nice talk with her about the findings and how this is a watch and see situation. I had time to think about it for a bit and digest that a recurrence was a possibility. Now that I knew more about this cancer and what surgery does, (experience), I had come to the decision that if this came down to biopsy with return, I would opt for the double mastectomy with DIEP flap reconstruction. I told this to my mom and she was good with that decision. She liked that I had time to process this information and come up with a plan just in case.

Over the course of the weekend family reunion I was able to speak with most of my extended family members in a one on one and let them know what was happening with me. Nothing yet, but I am now on a watch and see situation.

The rest of the year was mostly uneventful, celebrated the holidays, dealt with Robert’s abscess and decided when unemployment ran out I’d go back to the union and work as a temp until I got hired again.

My dear friend Stephanie from Support Group was hospitalized at the end of January with fluid in her lungs. Linda and I went to visit her, but I knew that this was caused by her metastatic cancer, it was in her lungs and this was not a good. They inserted a drain and she was able to go home after a few days. Linda and I didn’t say anything, but we both knew her time was limited. Yet another loss I knew I would have to deal with eventually.

The first Friday of March (6), found me going to a “First Fridays” in Long Beach at the EXPO Center to see Blake and the art Blake was exhibiting. Blake had some beautiful pictures of Bristle Cone Pines printed on metal. They were gorgeous. I checked out most of the other artists displaying works at the EXPO center. There was also a Tarot reader set up. She had multiple decks she worked with. I passed her several times and was drawn to her energy. I am not pulled to many who claim to read Tarot. Their energy usually does not pull me telling me they are not truly in tune with their spiritual self or the universe around them. I need that to be the case if I am going to trust them with a reading. I finally gave in to the pull and asked her for a reading.

Of course my first question was had my cancer returned. She pulled one card and looked at me with a clear gaze and said no, not yet. We went through a few more cards, about work, money, but then she put the cards down and without batting an eyelid, stared me in the eye and told me my spirit guides were very strong, and speaking to her. They were telling her to tell me that I need to complete my bucket list in 3 years. That was pretty direct and felt true in my heart. I thanked her for the message. I also found the perfect birthday gift for my mother from the artist that was set up next to Blake.

Then the pandemic set in and we were all ordered to Shelter at Home. Non-essential businesses were closed, toilet paper and cleaning supplies were bought in a frenzied mass of stockpiling, leaving shelves bare for weeks on end. We all had to start wearing masks. In person doctor appointments were cancelled. My next MRI was delayed as they had to space out people coming in for imaging. First my March appointment was pushed out 7 weeks to the end of April. Then I received a call, they could get me in two weeks earlier. I took it. This time my MRI report advised no new changes to my breasts from my surgeries or radiation. The small vascular changes they noted on my last MRI had solidified into a nodule, but not something that looked like cancer yet. The report also noted it looked like I was developing a cyst in my right breast. Recommendation, another MRI in 6 months. The cyst part also worries me as one of the gals in my Support Group, also with Triple Negative Breast Cancer, had what all the radiologists called a cyst in one of her breasts. She demanded they biopsy this cyst. When they tried to pull fluid from it, nothing came out. They had to do a core biopsy and sure enough it was another Trip Neg lump in the same breast she had surgery on previously. I am now on the cautious side of cysts!

We did take a quick trip out to Palm Desert before the pandemic lock down. Went to San Jacinto State Park at the top of Chico Canyon, overlooks all of Palm Springs/Palm Desert area, and went out to Joshua Tree several times to watch the sunset and see the stars. Since lockdown, we have spent some time in Bakersfield with Heather and Jose, as they have been very good with the social distancing and following mask and cleaning guidelines.

In July we went camping up in Sequoia National Park (Jose, Heather, Joseph, Kelly, Jordon and me). We did the Walk of 100 Giants, spent a night staring at the stars, I got very drunk, and had a wonderful conversation with my daughter-in-law Kelly. Stumbled my way back to our camp site and managed to not fall down!

Everytime I think it’s time for me to call the OCU hall to get temp work, more bad news comes out on the COVID-19 Pandemic. The latest news says cancer survivors have a higher chance of contracting the virus. So there is that news…. My unemployment keeps being extended automatically, so that helps. Eventually I will need an income.

We did lose Stephanie in June. Almost a year from when we lost Kelly. This has been hard for me to come to terms with. Especially since I know my own fate is hanging under that damn sword. I avoided this blog for so long because of not wanting to face the emotions tied with my current “on watch” situation, the echos of that tarot reading with the message from my spirit guides. Dealing with the grief of losing Kelly and Stephanie within a year of each other. Not being able to be with my support group in person or see my family except through Zoom meetings or Facetime. That 3 year warning weighs heavy on my mind, I feel like I am losing time. Time I don’t have. I still miss Kelly. I haven’t been able to bring myself to watch Stephanie’s Life Celebration held by her church and on posted to YouTube. Someday I’ll be able to watch it and celebrate her life, but right now my heart is still too raw to deal with that.

For not updating in a year, I think I have poured enough out for now. I will update again soon.

Life is dealing with Safer at Home orders

Sunday August 25 – I faced a fear

Coming up on my one year of survivorship, I was starting to feel anxious again.  Not about recurrence, not yet, I fear that in 3 years, 5 years, 10 years, but not now.  However, I was feeling anxious about my breasts in general.  I have not worn a normal bra since my diagnosis.  Almost, two years.  First, the biopsy site was too hard and angry, making wearing a bra so uncomfortable that I started trying out sports bras.  Even those were uncomfortable.  I finally gave up and starting going without a bra.  Extra dense breasts even at my size were somewhat perky and when I wore two tank tops together under my shirts, most people could not tell I was going without a bra.

After my surgeries and radiation, even though I am numb, I am still hypersensitive on my right breast.  Go figure that one.  Most of my right breast is still numb, I can feel pressure, but I do not feel touch.  There is a small area outside the areola where I can feel touch, but that quickly tapers into the area of no sensation.  Despite all this numbness, I have the hypersensitivity.  Pressure on my breast after a few hours starts to irritate, and if the pressure continues, it starts a throbbing ache.  There is so much scar tissue on the bottom side of my breast; there is no sensation there at all.  Yet, even the slightly reinforced bands of my lycra/spandex tanks cause me discomfort and I look forward to the end of the day when I can take my tank off as the feelings of discomfort are starting to get intense and relief is all I can think about when I get home.

Because of this and my emotional turmoil about how my breasts look now, I have avoided taking that next step of actually being measured and fitted for a bra.  I am still not sure how I feel about my breasts.  With one mostly numb, I feel a great disconnection from my right breast.  It sags more than my left breast.  Due to just enough blood flow to keep my nipple alive, my nipple is no longer a dusky pink, it is closer to a pale greenish tinge of my normal skin color.  As for my left breast, there is still the divot where my incisions intersect.  No breast tissue there, if you feel it, you go straight down to the chest wall.  This divot makes a W shape on the bottom of my breast.  There is also a weird, not quite a divot, but lack of fullness on the left side of my breast before the areola.  My breast slightly slopes inward and then puffs out right at the edge of my areola.  Every time I think about it, I get frustrated and angry.  How can a plastic surgeon take a perfectly normal breast with plenty of tissue to work with screw up the reduction that creates these stupid imperfections that a person already dealing with body issues because of the cancer, now has to deal with these too, on her good boob. 

Therefore, I have avoided finding out what size bra I wear now.  I have avoided going through that stress of having to acknowledge the imperfections, that my left breast is larger than my right breast.  Before all this is was just slightly larger.  Now, it is visibly larger.  In addition, I really was not sure how being fitted for a smaller bra size would leave me feeling, on top of all the other emotional issues I have tied up with the “girls” now.

Jordon and Kelly are getting married soon.  That means I need to find a dress.  Finding a nice dress to wear, I felt like I could not wear a spandex/lycra tank top to hold my breasts in place and provide the support I really need to keep from becoming completely uncomfortable.  Hence, my anxiety about my breasts and what was I going to do with them for the wedding.  I am the mother of the groom.  I could not go braless (as that is painful as well), and wearing tank top bras under a nice dress just does not feel right.  I knew this day would eventually come where I had to face taking the next step in survivorship.  I had to breakdown and deal with getting a bra.

I chose this weekend to do it.  My cousin/sister would be here.  She would hold me if the emotions became too much.  She would help me celebrate making this next step.  Moreover, the bridal shower for Kelly was this weekend, and I wanted to test the waters of taking that next step using her shower as my debut.

I thought I was ready.  I was nonchalant about my decision.  I was ready for this next step.  Deda was here, we made a morning of errands to do before we got ready for the bridal shower.  We stopped for eyebrow threading, went to the nail salon, manicure for me, pedicure for Deda.  Then we had to stop back at home because I dumped my coffee in my lap.  I just could not face Nordstrom with a coffee stain across my crotch and down my legs.  (I did not want to admit it at the time, but the closer we got to going into Nordstrom the jitterier I was feeling.)  After I changed my pants, we headed to the store.  We went up to the floor with women’s wear and lingerie.  I checked in at the register with an explanation to the sales woman there of what I needed and why.  She advised that they had a specialist there specifically for my needs and she would call her. 

Deda and I took a seat on the chairs provided for those waiting and I started shaking.  I could feel the tears trying to form behind my eyes.  Deda told me I could do this.  Mishel came over and introduced herself.  She started asking questions about my surgery, how I felt, etc.  Those tears started to migrate from the back to the front if my eyes, and I could feel my dragon start to unfurl, ready to take flight through my midsection to protect my heart.  Mishel told me she deals with this all the time.  Nordstrom is a store that has a specific program for woman who have had mastectomies, lumpectomies and reconstructive surgeries and how to fit them along with helping with insurance covered prosthesis fittings and claims.

Mishel took me back to the fitting room and started with a primary measure.  The band size, which may have changed, and just by looking at me and getting my input on what hurts and why and she looked at my extensive scarring in little miss righty she figured out my sizing.  She left the room and I sat there on the verge of tears.  I texted Deda, asking her to come sit with me, while I awaited the return of Mishel.  She quickly came back to the dressing rooms and knocked softly on the door.  I let Deda in and the tears had their way with me.  Deda held me as I cried.  I cried my fear out, my anxiety of my body image, my fear of the future, my fear of not fitting into a pretty bra anymore, my fear that it would be too painful.  My fear that I will always feel deformed and detached from my breasts.

She held me while all this came out silently.  She let me shed all this out on her shoulder.  I was back in control somewhat.  I still felt like I was shaking, but my dragon was curled back into her ball, ready to spring when I needed her, but no longer expanding her wings around my heart.  Deda and I sat on the bench in the room, talking about my boobs.  I showed her how they look now, over a year after the last surgery.  I had her feel my divot, and look at the weird shape on the left side before it puffs back out at the edge of the areola.  She looked at me in the mirror catching my eyes and reminded me all these little imperfections could be fixed.

Mishel came back in, and I introduced Deda, my sister, to Mishel.  She had no problem with my emotional support being there with us.  She brought with her a selection of bras in two different sizes.  She did not give me a chance to look at the sizes.  She pulled the first one off the hanger and had me face away from her while she tried the band around me.  Nope, I needed the next size up. She told me to just drop it on the floor.  I could not do that.  I hate finding clothes on the floor of dressing rooms.  How could I be so disrespectful to drop a new bra on the floor that some else will someday try on.  Deda finally took the bra that didn’t fit band wise.  Evidently, I am between band sizes now.  Back to a 38” band.  Next bra was pulled off the hanger and once again, I was told to face away from her while she fastened the band.  She told me how to pull all my breast tissue into the cups.  She adjusted straps and made sure the “darts” lined up between my breasts and laid flat against my chest.  She showed me how to pull the straps to get my breasts to settle into the cups.  As she adjusted the strap length again, we could see the difference in breast sizes by how much overflow I had on the left cup.  She re-adjusted that strap to allow more tissue to settle into the cup.  Only once she was done and felt I was firmly settled correctly into the bra cups would she let me see how I looked in the mirror. 

There I was, feeling like a scared little girl, staring at myself in the mirror, wearing a bra for the first time in almost two years.  I saw myself, my fat, my fear, my strength, my determination.  I saw a survivor, a woman, a girl, a warrior.  I saw me taking yet another step in healing.  A step I had not realized until I actually faced it that I needed to take.  Pieces started falling back into place that I had not realized were not where they needed to be.  I was feeling closer to whole.  As all this ran through my brain, as my heart shifted a bit and my soul settled, Mishel was asking me how it felt.  Was there any pinching, aching, pain?  Deda was giving me a look that told me she was wondering how I felt as well as being proud of me facing this next step.

The bra was soft; it helped shape my breasts into something that looked more normal to me.  The pressure was no more than my tank bras or my cotton weekend bras that have no shaping or real support, just kind of hold the girls in place a little better than wearing nothing.  I realized I could do this; I could wear a bra again.  Mishel asked if I wanted to wear the bra out of the store.  Yes, yes I would. She yanked off the tags.  Then she asked me if I wanted to try another one.  I was eyeing a nude lace bra.  I wanted to feel pretty.  The pink one I was wearing was pretty, but not as lacy and pretty as the nude one.  Mishel went out to get that one in my size, and was back quickly.

Same as before, I stood with my back to her as she fastened the bra band, adjusted straps and again guided me through settling all my breast tissue into the cups.  She checked the darts and the sides, did some adjustments, advised me what to do to fully settle my breasts into this slightly differently shaped cup and I was ready to see myself in the mirror.  I was perkier in this bra.  Deda gave me the thumbs up.  She said it was fantastic.  The tits were back.  She admitted to me that she was always jealous of my boobs, small, firm and perky, not needing to wear a bra.  Even after 35 when my breasts started to grow again, as they do with age.

Mishel had me try my undershirt on over this new bra and I felt good.  This one was a little tighter, and dug into places the other one did not, kind of made me itch, but I liked the way it made me feel overall.  This was the bra I wanted to wear out of the store.  Not a problem, Michele ripped the tags off and I put my shift back on before we went out to the register to pay for my two new bras.  I wore the nude lace bra out of the store and for the remainder of the day.  We went to the bridal shower and I showed my DIL to be, Kelly, that I had finally graduated to a regular bra.  Another little step to moving forward.  She seemed to understand this step showed genuine happiness for me.

I have gone from a 38E to 38D.  I still have body image issues, but I think that will be a larger issue to tackle.  Most of it is my weight, and losing weight is becoming a tougher nut to crack than I had hoped. I have not given up on that. I will keep trying.

The Bridal Shower was a wonderful event, and watching Kelly beam as she opened gifts and talked with her family and friends.  I enjoy watching her laugh and be herself.  I have discovered I have learned more about her than I thought I knew due to the games played.  I learned even more about my soon to be daughter-in-law, and love her even more for it. 

Life is healing one step at a time

Thursday July 11 – Facing my grief

I have been avoiding this post. Hiding in the whirlwind of my new job, and all the new time demands this creates. I’ve avoided thinking about my grief, and even used the excuse of work, to avoid going to Support Group so I wouldn’t have face reality.

But yesterday I received a call that made me face what I have not been willing to acknowledge in my heart. We lost our girl and gained an angel. Kelly was our girl, one of us, someone we shared our hearts with. She was one of us breast cancer fighters. One of us voicing our fears, our insecurities, our triumphs, our hopes in the sacred room of the Breast Cancer Support Group. She was one of us. According to her husband, Kelly passed away with a smile on her face. Kelly became our Angel on Sunday, June 23, and I have been hiding from this ever since.

When I heard the news I did cry, but I quickly pushed that grief into a little ball and told my dragon to hold it tight, to keep it away until I was ready to face this grief. The universe decided enough was enough, I needed to face this honestly and openly so made some connections that prompted my dragon to release my grief.

I received a call from our Support Group leader. I had to let her leave me a voice mail as I was in a meeting at work. When I had the opportunity to listen to the message she left me, I knew that today would be the day I would need to face that grey, blue and brown ball of sadness, helplessness with a bit of anger thrown in to make it swirl in a frantic mass. The message left was that the father of Kelly wanted to speak to me about my post “This is dedicated to the ones I love“. After I left work Wednesday, I called our group leader to thanked her for relaying the contact information and that I would be reaching out to Kelly’s family. I then called and left a message for Kelly’s father.

I was relieved at first that I would not have to deal with that angry, sad helpless ball just yet. My heart hoped they would not call me back until later, like Sunday. But I received the call at 8:37 PM. First Kelly’s mom relayed her thanks to me for my kind and loving words and asked me how I was doing. I instinctively knew she meant how was I doing with my cancer. I told her I was still cancer free as far as know. She told me to stay that way. That is my plan. She is still having a hard time dealing with her loss and I can understand that grief and my heart broke a little more for her.

Then her father came on the line. He told me that the picture I had of Kelly that I posted was perfect. She was good a saving dogs she knew would not make it out of the shelter alive unless she got them a home. She had a dog with one eye, and her parents had a dog with a crooked jaw and covered with moles that they said they didn’t need, but when Kelly made them come meet the dog, they had to have.

He thanked me for my post about Kelly. Despite being in the hospital and knowing her prognosis may not be good, she was beaming when she read my post. She shared it with her family. He told me I had captured her true essence in my writing. He also confirmed what I already knew in my heart of hearts. Kelly didn’t want us to visit her in the hospital because she didn’t want us to see how the end of a battle with breast cancer looks like. It wasn’t vanity on her part, but her concern to spare us from this reality. She had told her family she felt we were all our true authentic selves in our support group and the camaraderie she felt with us was special. She felt she could be genuine with us, and that we were genuine with her.

Her father and I shared tears and grief over a phone line, and he hoped I would keep in touch. After sharing with him and his wife the special bond Kelly and our group shared, I feel that this connection was meant to be. The universe connected us for a reason, and I will be staying in touch with them How hard it must be on their hearts and souls to lose their daughter. I know how lost I would feel if I lost my daughter. They helped me shed the tears I really needed to shed to come to terms with my grief and face the reality that Kelly would no longer be part of my physical life. I think she had a hand in directing this connection.

Kelly, you will always be a part of my heart and I miss your infectious enthusiasm and wit beyond measure. I miss my friend. But I feel your love with me, and I am so ever grateful to have met you in this life. My wish for your family is that they will eventually find peace. I will always be on the search for any shows or movies your son plays a role in, and I will stay in touch with your family as it has helped me start my healing over your loss. I hope that I can bring the same to them.

Life is dealing with the grief

Sunday, June 23 – Evidently I Paddle Board now…

My first week at work was wonderful.  I love my new job, and the people I now work with.  There is so much that needs to fine tuning, and everyone wants to talk to me; get my take on things, and then they tell me how wonderful I am.  My ego is going on a total trip.  I am trying to keep it in check.  Joking aside, I am humbled at how much they appreciate me.  In addition, they are dog friendly offices. Every day in this past week there has been a dog in the office.  Friday was the best, three “puppies” in the office, all adorable and all played together at one point or another.  I keep reminding myself that I am the “boss” so I need to remember to delegate. 

Most of my week was meetings, with ops groups, sales, HR, my boss as well as IT to review current system improvements and review my wants and needs for process improvement and implementation.  Meetings start at the assigned time and finish at the advertised time.  I love this new job.  Did I mention the puppies!  Nothing like puppies to help you through the day. 

Two weeks I found out that the Swedish cover band of ABBA is coming back to the Hollywood Bowl.  I was just about ready to buy tickets without anyone to go with me, but decided to make a post in Facebook about the concert and to see if anyone wanted to go.  Our neighbor asked me if I got tickets yet, and I told him no.  Later that day, after I was home from work, he and his husband came over.  I thought they were going to talk to us about the toothless wonder cat we share, but no.  Moses bought two tickets to the concert and gave them to his husband Bob and me for Bob’s birthday.  Turns out Bob also loves ABBA, and now we get to go together as part of Bob’s birthday present.  I get to be Bob’s flamboyant date!

Today was the June Fundraiser event for the Cancer Support Community.  We went to this last year too, and had won a few items from silent auction, mostly due to Robert taking care of bidding on items and following up on the bids making sure he was the successful bidder on the items he really wanted.  This year it was I doing the bidding.  We discovered that drinking wine and silent auction do not go well together….  I forgot I bid on a paddle-boarding rental for four.  Seems I was the successful bidder on that as well as several items that surprised Robert.  We had a good laugh over all the things I bid on and won.

Now I get to learn how to paddle board.  As well as take three others with me.  Jordon, Kelly and Heather have already volunteered to go with me since Robert will not.  He says there are sharks out there waiting to eat him.  Now we just need to find a date when we can all go.

Robert and I both ran into people we were hoping to see, and we enjoyed catching up with all of them.  Cancer Support Community is really that, a community where you are able to connect with others who are experiencing and understand the same things we are going through.  When I finished cancer treatment and went through my depression, not only did I have my support group there to help me, but I also had the resource of counseling.  I heard a TED Radio Hour podcast that touched on moving forward.  There is no moving on; you do not leave behind your grief, your fear, your inner aches and anxiety.   You learn how to move forward and keep moving forward.  You can find the podcast here if you want to hear it.  I found it made me remember how lost and adrift I felt, and how I am centered once again; but I still live with everything that plagued me before.  I did not find a “new normal”, or start living my life again; start over or move on; I just started taking steps to move forward.  Big difference.  However, I still cling to my support group like a security blanket.  They remind me how far I have come, and support me in my journey forward.  I hope I am able to provide them with the same sense of belonging, understanding and love they provide me.

I am sure they will all laugh with me when I tell them about paddle boarding!

Life is moving forward

Friday, June 14 – Bittersweet and laughter

Today was a bittersweet day for me. Last day with my current employer before my leap into the great unknown with the new company. As always with anytime I am feeling any kind of stress or anxiety, I was awake early. I did catnap between 5:30 am and 7:30 am while I waited for Robert to get done in the bathroom, read and played my puzzle games to improve my brain. I must say I will miss my leisurely mornings, taking my time to get up, get ready to face the day, make my Latte, and watch my shows while I eat my breakfast and drink said latte.

I took in gifts for my bosses in thanks for all they have done for me. I worked on the last of the process documentation I could think of to help them take over things I had previously managed, and spent my day trying not to let my mind overthink my decision. I loved my job, I love my bosses, I love the people I work with, this was a very difficult decision to make.

When I first came to work for GFS I had a plan that this would be my last job before I decided it was time for me to retire.  If I learned anything over the past year and a half or so is that I am not ready to retire!

That said, when I came back from my medical leave I was so grateful that GFS kept a place for me, to return to work at a pace I could handle and work myself back to what I determined was my best again.  I am so grateful for the time and space they provided for me to gently move into living life, as I wanted rather than how my body dictated.   I was ready to keep working that plan I had made when GFS and I came to an agreement those years ago.

Funny, when you make plans, God laughs and says “Oh yeah, while try this out!”

As you all know (or may not know); for months I was pursued by another trucking company, through LinkedIn, and I ignored them.  I had my plan, I loved my plan.  I loved working where I worked and thoroughly enjoyed working with all the people at GFS. Why would I leave?  I finally answered that continues “knocking” on my door, and was made an offer I just could not refuse.  This decision was not easy for me to make.  Like I said, I have loved working at GFS, and loved what I was doing.  All of the people there have provided me with a chance to learn more, stretch my wings further and shared with me pieces of themselves that I will always treasure.   They all helped me face one of the hardest things I have ever done – beat F’ing Cancer!  I beat a cancer that the odds were against me from the very get go.  Without their kind words, support and prayers I know that my outcome could have been much different.  For this, there are no words that can express my gratitude.

I feel blessed to have worked with all of them.  My parting wish to them was GFS will continue to grow and prosper.

They threw me a small luncheon going away party, that included a wonderful card and some gifts. I feel so blessed to have worked with this wonderful group of people.

While I was helping one of the girls make her way through a report I used to run that she would now be responsible for, one of my friends who makes me laugh, texted me a picture of a flyer for a workshop being held in August about PTSD and Cancer. As is normal for us, the picture was accompanied with text, which we are both very good at miss-typing, leading to some hysterical conversations. Today was no exception. With the picture the text really didn’t make sense so when I received the second text, I started giggling and responded, with my giggles erupting into full blown laughter.

The text was: “I bed this! Wanna go? R is leaving from KAX at 9am in Sunday” followed by “Lax”, and then “Omg” with the laughing faces. Me being me, responded with “I’m still stuck on bed???”

She responded with “I need this. And new typing fingers apparently. Lol. NEED. no bed” I of course had to push this to “You need your bed?!?!?!” Her response was “Ha! Maybe my subconscious wants someone in it? Lol…” I of course used my gutter brain and responded with “We could get you an electronic boyfriend” followed with three eggplant emojis. My friend said she would take one.

We quickly ended out text conversation, with laughter and went on with our days. I finished mine with GFS, bidding my final farewells and holding back my tears for a plan ended, and holding my breath for my new adventure to come.

Several hours later, as I awaited the news of one of our girls going through surgery today, my friend called me back. (I am not mentioning names to protect the guilty!) She had sent me yet another picture that had me laughing, this one of a candy bar called Flirty.

She called me back to explain the Flirty candy bar. Seems while she was waiting at the hospital for news of our gal in outpatient surgery, and when she would be released to come home, a nice gentleman was chatting her up. Granted he was at least a decade and a half older than her (and we’re no spring chickens here), and despite her best efforts to be rude to him and continue working on her laptop while she waited, he continued to “flirt” with her. He hangs out in the hospital lobby as he enjoys the cafeteria coffee and the live piano music provided to ease those who are visiting the hospital for less than happy reasons. We joked that this was the new pick up place for those in assisted living homes, instead of the hallway pill exchange (that is a story for another day)!

He offered to get her a coffee as well, to which she declined, but he brought her the Flirty chocolate bar instead. I laughingly told her “see, you get a real boyfriend instead of an electronic one, as well as a Sugar Daddy!” We continued to throw one liners at each other as we laughed harder and harder. I love her so much for always making me laugh until I could pee my pants!

Our gal came through her surgery just fine and will be released tonight to go home. Our girl Kelly is home from the hospital, finally. We will need to plan a visit to her to bring her some laughter and female companionship. Plus, we miss her.

Life is taking leaps of faith and laughter, always laughter

Friday, June 7 – Mindfulness continues

I know I must have talked about mindfulness when I was going through the Artist’s Way class last summer, or even on some of my walks I took before I realized that my neuropathy was just too painful to keep up my walks before I had some sort of medication to control my symptoms.

I still practice Mindfulness.  I enjoy it so much, that unless it is pouring rain, my “Transformer Car” – Beta has her top down, no matter the temperature.  I can hear what is going on around me while I drive.  I do have my radio on, usually with the sound down low so it acts as a nice background music to my observations.

I love hearing birds calling, twittering, chirping and tweeting.  I hear hawks calling to their mates, mockingbirds that imitate so many different sounds, song birds, crows and seagulls on my drive to and from work.  I get to see birds flying, butterflies flitter by, hear someone’s conversation on their vehicles Bluetooth.

There is a pre-school on my drive to work, and the kids have outside playtime about the time I pass daily.  I can hear the energetic squeals of delight as they play on the slides and swings, I hear their high-pitched voices calling to each other to come play or try something new.  Their laughter echoes through the intersection so joyously that I cannot help but smile at the unrestrained glee happening in that play yard.

There are Jacaranda trees in bloom throughout my whole drive right now.  I love seeing the clouds of purple blooms that make up the fullness of the foliage on their branches, and they leave a shadow of purple that fills the area under the tree, creating an outline of the fullest part of each tree.

As I pass over the Los Angeles River heading to work in Signal Hill, off to my right I can see an area of marsh and a small pond in the flood control where ducks, seagulls, white pelicans and other water fowl congregate to eat, rest, nest, whatever, before the river continues on to the harbor in Long Beach.  It is a little oasis amongst the cemented walls of the flood control.  A little oasis located in the middle of a city, next to a major freeway.  This freeway connects the Ports of Los Angeles and Long Beach to major rail hubs and access to other freeways that lead to industrialized areas in the Los Angeles Basin and the Inland Empire.

As I enter Long Beach city limits, the center median planted with those Jacaranda trees, and as the traffic moves beneath their spreading branches it creates a disturbance in the air, causing some of those little purple blooms to swirl in the air currents, fall off their anchor to a branch and fall to the ground.  On occasion, I have had a bloom or two float into Beta or even on me as I drive by.  I can smell the sweetness of those blooms as I pass, and will miss them when the bloom is complete.

There are other smells that catch my attention; the sickly sweet smell of decay as a trash truck rumbles by.  The pungent odor of a skunk that has either been recently roused from its daytime sleeping hole, or hit during the night and lying dead somewhere, sometime seen and others hidden in the brush or debris on the side of the road.  The sharp chemical dark smell of warm tar as a street repair is conducted.  The nauseating smell of a diesel engine as a truck thunders by.  The super sweet smell of the star jasmine in bloom.  Or the mouth watering aroma of the exhaust from a restaurant.

Even as I pass through the most industrialized areas, I can still hear birds calling, their voices pitched so their calls are heard over the rush of cars and the heavy roaring of trucks.  Vehicles moving over the roads to their various destinations, home, work, a store, a rail hub, a warehouse, a container yard, or to the port.  Everyone with a destination they are determined to arrive as quickly as possible, most of them oblivious to the natural world around them.

This is my mindful driving, that I practice every day.  Even if it rains, and Beta has her top up, I listen to the sounds of the rain drops as they hit the windshield.  I hear the sound of tires swishing through the wet streets. I also hear the sound of the windshield wipers as they swing across the glass wiping the water to the sides.  I feel the warm air blowing from the vents heating the air within my cocoon inside Beta.  I feel the pressure of my seatbelt across my lap and chest, holding me safe in my seat.

I feel the slight slip of my front tires as they slide on the wet paint when I start moving from a stop at an intersection.  When I get in or out of my car, I smell the rain moistened air.  It smells clean and fresh.  If the weather front is exceptionally cold, it smells brisk. 

I look forward to the slow warming that will come with summer.  What I see, smell and hear on my drives will change with the seasons.  I relish every little moment of mindfulness during my drives.  It reminds me there is more to life than destinations and I am ever so grateful that I have yet another day to cherish my world and those who share it with me.

Life is all about the Journey