Tag: Cancer

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

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

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

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

Thursday October 5 – Port Placement

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday October 4 – Last day in the office.

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

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

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

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

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

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

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

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

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

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

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

Life is moving forward.

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

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

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

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

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

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

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

Everything else on my labs was fine.

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

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

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

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

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

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

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

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

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

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

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

Life is still on hold.

Saturday, September 30 – Disneyland Finally

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life is picking your battles

Friday September 29 – Chemo School

Today was Chemo School. I had picked up the prescriptions that Dr. Sikaria’s office told me would be called in and that I would need to pick them up prior to “school.” We headed over with my new chemo meds and went to learn.

When we first arrived, they advised us that the approval for the genetic test had come through and that they could draw the blood for that.  I had some forms to sign, and they had to go over some of the information about the test.

I signed the forms while the nurse got everything ready to draw my blood.

I told her there was a skin tag on the right arm at my elbow.  That marks the spot where the blood comes out.  She tied the tourniquet, gave me the rubber ball to squeeze, and started feeling around.  I told her, “I promise,” use a butterfly needle and go straight up under the skin tag.  Blood will come out.  She felt some more, and I told her you will not feel it.  Trust me, and go for it.  She did, and her little squeal of delight when she got blood told me she didn’t believe me.  I teased her – you didn’t believe me!  She said she was really worried because she couldn’t feel it and was afraid she would have to stick me a second time.

After that, we were taken back to an exam room to meet with the Nurse Practitioner and learn about chemo.

She went over our insurance and co-pays first. There is no copay for chemo, but there will be co-pays for doctor visits and when we meet with the Nurse Practitioner.

When I come in for my first chemo appointment on 10/10, that is day 1 of cycle 1.  It will take about three hours to complete the infusion.  They will start with anti-nausea drugs, then the chemo drugs.  When I am done, they will apply a Neulasta disc.  It’s battery-operated and will administer the Neulasta automatically at the proper time.  It will have a light on it when it turns red or off or something like that; after 27 hours, I can remove the disc.  It will make a noise when it’s ready to administer the drug.

One of my chemo drugs will turn my urine pink to reddish color.  The other one will irritate my bladder, so I have to drink a minimum of 2-3 quarts of fluid every day and make sure I drink enough to make me urinate twice every night so my bladder doesn’t go too long without emptying the first 2 to 3 days of the cycle.

She did ask me about motion sickness, and when we told her I am prone to motion sickness in the car (generally not in planes, trains, or boats, though), she changed the anti-nausea drugs that would be administered. She had already had Compezine called into our pharmacy, but she told me not to pick that one up. She will have a different drug called in for me to pick up and take on days 1-4 at bedtime.

I am to take Decadron days 2 through 4, day and night, and Zofran every 8 hours as needed, days 2 through 4.

I am also to take Claritin on day 2 to help prevent the bone pain that can be caused by the Neulasta.

My hair will fall out around 2 to 3 weeks after day 1 of the first cycle.

We already have an Rx for Cipro in case I spike a fever. If my temperature is over 100.4, I am to take the Cipro, and we are to call in and report the fever.

If I develop mouth sores, we are to call in.

If the nausea is not controlled, we are to call in.

If we have any questions, we call in.

This is only for phase one of chemo.  We have to do this again for phase two…

I have a standing order for a CBC (Complete Blood Count) two business days before the start of the next cycle.

Life is expanding our medical education