So, the following is basically another chapter in my story. It’s not anything that I ever intended to share, but after my close friend, Shirley, read the previous part called My Story, she said, “That’s it?! I want more! I feel like I’m reading a real story and want to know more.” So, this is for her… And, maybe if you read this you will understand more about why my son and I have the relationship that we do, and why I feel so invested in his life and he in mine. My apologies if this is boring and feel free to leave the page.
There is a lot of back-story and goings on that really give testament to and reaffirm the positive, wonderful characteristics you have read about my son. We will take this back to January of 2014 as this was the year I told my son to take some time off and enjoy his creative pursuit. The end of this month is when I found my dream job at a beautiful Retirement Community securing the position of Executive Secretary and Assistant. I answered directly to the CEO and worked with the Executive Directors of each department. This year was an amazing experience and the team that our CEO had put together was magical and we were all a family. The residents too, felt like family and were at the core of our mission and purpose at The Mayflower. Thanks to our Marketing Director, Jana, we boasted a 97% occupancy; and thanks to the CEO and his charismatic, caring demeanor with all 200 plus employees; we kept a 90-92% retention rate in staff. Many of the staff have been at The Mayflower since its inception with our CEO.
My first year there was amazing and my boss, the CEO, was the most altruistic saint of a man you could ever wish to meet. I also met a few others there that I consider friends for life. Moving along to January 2015; I received a diagnosis of breast cancer. I always had ongoing cysts, so I wasn’t concerned until one grew quite quickly to 5 cm. I went to a doctor I had never seen before, and didn’t feel comfortable with, which sent me for a biopsy revealing it was two different kinds of cancer, one was extremely aggressive. She then referred me to a breast surgeon. This surgeon was insensitive and contentious, launching into all the chemo that would be needed to live through this. I was completely shaken and told her that I was considering alternative medicine. She guaranteed me it would never work, and it would spread throughout my body within a year.
Stunned, I went back to work, and confided in our CEO. I had only been there one year, and he immediately offered me so much love and support; I shed tears of appreciation as he hugged me. He assured me that my time off for chemo, surgeries (which there were three) and any illness would be financially compensated for. He also connected me with our medical director at The Mayflower; that led me to a new breast surgeon for the bilateral mastectomy, who was an absolute was an angel. The amazing gift of positive connections kept coming. The breast surgeon put me in touch with the most wonderful, compassionate oncologist and an excellent plastic surgeon for the reconstruction. I was very private and only a handful of coworkers were aware of my situation, also my amazing older sister. She was the only one in my family that I revealed this to, as I think the other members of my family would have been overly involved and make me feel more insecure about the outcome; whereas my sister just let me share when I needed to and gave me her unconditional support. So, I purchased a couple of wigs that matched my hair perfectly before the first chemo and no one detected mine was lost.
My son was so supportive and truly understood the fear I went through and though he wouldn’t say it (for my sake), I’m sure he was afraid too. At this point, even though my son offered repeatedly to go to all doctor appointments, I told him not to worry and that I would let him know how they turned out. I kind of regret that, but at the time I was so overwhelmed, and I didn’t want to inundate him or have him experience any unnecessary stress. The most difficult appointment was with the oncologist. When I shared with him my thoughts on alternative medicine, he held my hand and promised me I would get through this with a specific cocktail of four chemotherapies. He explained these would all be given on the same day, and I would need to have a port placed for the IV. He then gave me his personal cell number and said that my son or I could call him anytime, day or night, with questions or concerns. This was followed by him handing me four large folders of information, one for each type of chemo. Next, he insisted on sitting with me while I called the breast surgeon’s office to schedule a port placement.
When I returned home, my son immediately wanted to know how the appointment went, I was still feeling shocked and numb at this point. I gave him the oncologist’s phone number and four folders of information. I said, “here you go if you want to read about the chemo they are prescribing and any side effects. But please don’t tell me, I don’t want to know. I am having a port put in on February 20th .” Of course, he read everything and did a lot of online research. When he was finished, he came up and hugged me and told me how much he loved me and that everything was going to be okay, the statistics were very good, and he assured me I would be fine and told me that he was there for whatever I needed. This is where I should add that my son is the most loving, affectionate person you could ever know. Since he was tiny, and to this day, he literally tells me, at least ten times a day, that he loves me and will go out of his way to come and hug me every chance he gets.
I continued to work and only took time off for the chemo treatments; I felt that I owed dedication to my boss and The Mayflower no matter how sick I felt. As with a lot of chemo patients, I could barely eat and lost 37 lbs. My boss kept trying to get me to go home as he could see how ill I was, but I was determined. During this time my son drove me to work and back, even though it was only one mile away, as low blood pressure and fainting became a thing and had occurred on a few occasions. He also accompanied me into grocery stores or wherever I needed to go. I’m so glad he had taken that year off as I really did need his help.
Anyway, we made it through the eight plus hours of each chemo treatment in six months; surgeries began in June of 2015 with a bilateral mastectomy and reconstruction. The reconstruction part was a process and would take another six months until my final surgery. This brings us to the end of 2015, though my surgeries went well, this turned out to be a very sad time for absolutely everyone at my work, including the residents, because my loving and incredible boss was announcing his retirement after 26 years as CEO of our enchanted Mayflower Community.
This is the part that goes from a sad time to worse…
The Mayflower’s 2015/2016 high powered but grossly misgoverned Board of Directors (with the exception of one) chose a new CEO for the position, who had zero experience in the field of Continuous Care Retirement Communities. The landscape of our loving community was forever changed and botched; with our new CEO eliminating, one by one, every Department Manager or long-term employee who was ever hired under his predecessor. Two of my most important friends were terminated for fraudulent excuses from the new CEO. Even though I always remained on good terms with my new boss, I frequently wondered if I would be next. Finding this out never came to pass as in late November of 2020 another sudden health fluke appeared.
Beginning mid-November 2020, some unusual and unexplained bruises began to appear. First it was both forearms and backs of my hands which were noticed by my coworkers. The bruising continued to my arms, legs, torso and feet, causing very noticeable swelling and discomfort. The joints were so swollen, I couldn’t even bend my arms to reach up to wash my hair and had to rely on our Mayflower Salon to help me out. By the third week of December, I was really getting concerned and made an appointment with my physician. On the morning of Friday, December 18th I went to see the doctor and she told me to go to the hospital lab immediately for the blood panel she was ordering. That evening, I text my friend, our previous Marketing Director, pictures of some bruises and wrote, “If something happens to me, will you help my son tie up the loose ends?” She immediately responded, “ WAIT, WHAT, what is going on?” I told her I didn’t know and was waiting for lab results and that I would keep her posted. She of course assured me she was there for whatever we needed. I can’t say enough about this friend and how blessed I am to have her in my life. She is truly the most remarkable woman with an amazing, positive attitude no matter what. This incredible human being, that I admire more than anyone, is so gifted and has even started her own business teaching and producing beautiful calligraphy art.
My doctor called me on Sunday, obviously outside of business hours, and said my labs came back with a critical Factor VIII in the blood; she told me to go to the Emergency Room immediately because I was at risk of an internal hemorrhage and should be seen by a hematologist. So, of course I ignored this instruction and decided to wait until Monday to call my Oncology/Hematology office. I didn’t tell my son about this call from the doctor, or he would have insisted we go to the ER stat: I had just adopted a puppy eight months before. My son was no longer available to take care of the dog because he had begun work in September with a new job as a Senior Software Engineer. Being only a mile from work, I could go home every day for my lunch break and take my fluffy little Pomeranian out.
Having dealt with the Oncology/Hematology Department back in 2015, I trusted them rather than a random hematologist. I was scheduled to be at work at 9:00 am Monday and called the hematology office right after 8:00 am when they opened. They immediately put me through to the appointment scheduler after I described my situation. The scheduler was very apologetic but said the soonest she could get me in would be eight weeks. I asked her to please take a message to pass on to the doctor and as she repeated to me, “Okay, you have a critical Factor VIII lab result and have extensive bruising and swelling on your body and limbs.” I said that was correct and please tell the doctor when she sees him.
Well, another amazing occurrence transpired: Within ten minutes of me calling the office I received a phone call whose number I didn’t recognize, but something told me to answer it anyways. It was the hematologist, Dr. Castilla. He said, “I was passing by the scheduler’s desk and overheard the conversation that you have a critical Factor VIII. Have you ever had hemophilia?” I said “No, never.” He said “Well, if you’ve never had Hemophilia before this is extremely rare for it to occur and very dangerous”. He asked me about the extent of my bruising and then told me that he would meet me at the ER right away because I was at risk of a brain or internal hemorrhage. I explained I needed time to orchestrate things at home and could be there in about three hours. He told me that he was calling from his cell phone and to text him as soon as I arrived at the ER as his office was right across the street. I agreed, and, in a bit of a panic at this news, went on to make plans. The first call that I made (even before my son) was to the breeder I had gotten my puppy from. We had developed a very nice friendship and Tater visited his parents often. She said not to worry, she would be on her way to pick up the puppy and keep him for however long I may need treatment. Next, I called my son who was at work and asked him to be home around 11:30 am. Finally, I called my girlfriend who I had texted pictures to let her know what was going on and agreed to keep her posted. I still needed to pack an overnight bag as the Hematologist instructed, get to work, to take care of a few time sensitive duties and talk to my boss. The breeder came as promised and I went to my job.
By the time I got to work I was in a bit of a frenzy, nobody likes hospitals, and this also happened to be Monday, the 21st of December; four days before Christmas. I explained things to my boss, the new CEO, and a few close coworkers. Then I spent the next hour taking care of business. Accepting abandoning my desk was very difficult for me, as everyone there; coworkers, boss, and residents alike, counted on me for such a variety of helpful items. I wasn’t sure how things would go in my absence and if my job would be waiting for me when I could come back. Another BIG piece of insecurity for me was knowing I wasn’t going to be home for an undetermined length of time. You may remember that I said I was a helicopter mom, well, that hadn’t changed. It gave me such pleasure to make my son breakfast, pack his lunch and prepare dinner for him. Yeah, I know, I need to take a look at that…
My son assured me he would be fine and had everything under control, then he drove me to the hospital. He waited until I got checked in to the ER, and then I insisted he go back home; I told him I would call after I had seen the doctor. Within a half an hour, Dr. Castilla was there along with a colleague and a handful of what he said were resident doctors in training. He was very friendly and not intrusive in examining my bruised limbs. He pointed out to his entourage several solid and painful hematomas, as well as hemarthrosis in a number of places (bleeding into the joints). He told me it was very fortunate I hadn’t had an internal bleed by this point, or I could have been dead within a short amount of time. His colleague then told me I would have to remain in the hospital for three or four weeks for consistent IV therapies and treatment. HA! No way was I going along with this. I said very matter of fact that Christmas was in four days, and I would be going home in three to be with my son. Dr. Castilla and I went round a bit on this, he was concerned my condition would worsen, but could see I wasn’t going to budge. He made me promise to come back to the ER the day after Christmas, which was Saturday, and he would meet me here to examine and readmit me. He then proceeded to get me admitted to the main hospital where I began intravenous treatment.
My son and I stayed in contact every day while I was in the hospital and he told me all about discovering Instacart for groceries, frozen, ready to heat lunches for work and yogurt or egg dishes for breakfast; dinner was either take out or frozen, and I was so relieved this was such a breeze for him. Shame on me for ever worrying. He even came to see me after work one day and snuck in a bottle of wine that I could enjoy with dinners, to keep in my suitcase (this was probably against protocol, but what the heck?). He picked me up on Wednesday, which was Christmas Eve. I quickly drove over to pick up my puppy to enjoy him for a few days and give the breeder a break for the holiday; she assured me she didn’t mind looking after him and to bring him back before I went into to the hospital again.
My son and I had a lovely Christmas together but of course Saturday came, and it was time to take Tater back to the breeder and have my son drive me to the hospital for my next stay. Honestly, the hospital was beautiful, all newly renovated with a huge room and a wall size window. The nursing staff was so attentive and kind. I am glad this is the one my Hematologist recommended as he worked in two.
When he arrived and began to examine me, as he was concerned about, I had developed more bleeding. This time it was in my wrist joint and going all the way into my hand. My hand was completely swollen, purple and useless. He explained I had developed something called compartmental syndrome and the swelling was dangerous in the extremity like this because the tissue will die. He prescribed all sorts of medications, including two different chemo treatments. (Thankfully, this type did not make me lose my hair again) He then said he wanted to meet with my son on Monday and if there was anyone else that would be an interested party, as he wanted to go over treatment and necessary changes. I think he didn’t trust my judgement and level of cooperation because, as he told me later at an appointment, “Telling you how critical this was just wasn’t registering with you, and you had the most nonchalant attitude I have ever dealt with.”
I called my friend Jana, the previous Marketing Director, and she of course agreed to be at the hospital by 9:00 am on Monday. By the time this meeting happened, I had been on morphine for days which, comically, did not improve my lack of cooperative attitude. I really don’t remember too much about the meeting, but my friend and son said he kept using the word critical and that I needed stay put in the hospital until they got the bleeding under control. He also said I would not be able to return to work as this would be an ongoing risk. (My job did entail a lot of lifting as I ran the ‘mailroom’ at The Mayflower and was constantly sorting packages, often heavy ones, for delivery to the resident’s apartments or townhomes. I also did a ton of mailing for them, sometimes huge boxes that needed to be weighed, measured and picked up by UPS). So, the conversation with the Hematologist ended, with him telling me I would need to go on permanent disability. What a shocker for me… I remained in the hospital for another three weeks and four days.
So, that was three and a half years ago, and I remain on Social Security Disability today; I have had some subsequent episodes of major bruising and swelling, and I continue to be careful. The last thing I want is another extended stay at the hospital.
My son was constantly there for me, visiting several times a week as he worked long days, and the hospital was twenty minutes from our apartment and even farther from his work. My friend, Jana, also came to visit a bit and we are close to this day. I am also still very close to my first boss, and another Department Manager who worked there. It was hard to let go of that job. Even though all my friends and wonderful boss weren’t there, I still felt very needed by the residents, and they always seemed like family to me. After I left, for some time, I went through a deep depression and my son was concerned. Thankfully I have come out of that very long, dark tunnel. Actually, his “coming out” to me and confiding so much about his life and first relationship, that he’s currently in, has made me understand that I do still matter to him, and always will.
The next part will be difficult for me to write, but maybe it will help others who read this and find similar worries… I’ll work on telling you about this first relationship and all the concerning dynamics that are part of it. Unfortunately, all those wonderful characteristics that are the essence of my son; compassion, empathy and kindness, have also proven to be a disarming vulnerability and disadvantage, since this first relationship is with a partner who has true personality disorders.