My World Has Changed: In Real Life (Part 2)

in the moments following the April 7th phone call from the breast center, i began to write Part 1 of this series. it was just a few lines, mostly to capture my initial response at the news that i needed to return for a second set of images. the original topic for April’s In Real Life post would have either been about joining weight watchers (which i haven’t done yet) or something about my fitbit. as i wrote the words “my world has changed”, little did i know to what extent that it would. i’d anticipated that i would include the experience of the return visit to the breast center (with an all clear result) into a post on the topic of refocusing my efforts to lose weight and get more exercise. those are efforts i’ll continue to pursue, however, i’ve got more to share on how my world has changed.

April 21 (continued)
on their way after leaving from Kaiser, the kids had called their father to tell him that they were stopping to get something to eat and then they would come home. he told them to come home first because he and i needed to talk to them. our kids are so great together and i’m sure that they would’ve liked to have had a chance to just be with each other but they caught on that something was up and we all got home at about the same time.

without much build up, i told them that i’d had a breast biopsy and that the result had been positive. this was how i would phrase it to anyone i was telling. i also told them that according to the doctor who had called me about the biopsy results, all i would need was surgery. my husband went on to explain a bit more and for the most part we were rather matter of the fact about the diagnosis and prognosis for full recovery. like us, i think that the kids were somewhat shell-shocked at this point with the amount of bad news they’d been hearing in the last day or so.

April 22
i told the husband that i’d be writing about the biopsy results (my post should have published that day but i hadn’t finished it yet). and if i was going public on my blog, then there were family and friends who should be told first hand before that happened.  we were in funeral preparation mode for most of the weekend so these calls were made by both us in between getting the house cleaned up and presentable for visitors (the shiva minyans) as well as me working on the post, a eulogy for my mother, and assembling collages of photos of my mother for boards that would be on display at the chapel and in our home (see A Woman I Know: Bernice).

April 24
writing my mother’s eulogy hadn’t been easy.  i’d worked on it most of the day before and had been up until about 3am.   the funeral was set for 3pm with the “meal of condolence” afterward to be held at the country club my sister and brother-in-law belong to which was about 5 miles away and in route between the cemetery and our home.  all of those arrangements were set and it was only the eulogy left to finish and since it wasn’t yet, i was up and at it again by 7am.

to provide some inspiration, i’d read the eulogy i’d written for my father. his eulogy started with a brief summary of how his health had begun to fail and then he’d broken his hip. my father had had spinal stenosis which caused him a great deal of pain and in his weaken condition, he no longer had the resolve needed to rehabilitate and get back on his feet. in the latter part of the eulogy, i spoke of my father’s life and his love for his family. his passing was sad but there was no baggage or misunderstandings.

i wouldn’t be able to follow that script for my mother’s eulogy. there were too many conflicting emotions associated with my mother. looking through old photos and talking with my sister, her kids, my kids, my husband all helped to stir memories of long forgotten events that gave balance against the experiences of the past three years. i finished it with enough time to get myself dressed and leave on time.

all day though, i’d been waiting for a call about scheduling my consultation appointment with the surgeon who would be operating on me and i was now worried that it would come during the service. at a jewish funeral, it’s typical for the casket would be closed. when we arrive at the chapel, my sister and i as well as the immediate family were given an opportunity to see our mother one last time. perhaps since this is my second go-around with parental death, the sight of her is not as jarring as it had been with my father. even though i’d been on the verge of tears most of the day, seeing her doesn’t get me started.

as family and friends start to arrive, i sat in the alcove for family reviewing what i’d written and scribbling some last minute edits. just minutes before the funeral was to start i get a call on my cell phone that i don’t answer, figuring that a message will be left if the call is about scheduling an appointment. my swirling emotions about this not yet quite understood health crisis was now mingled into my swirling emotions about my mother.

we’ve known the rabbi who led the service for about 40 years so he’s no stranger to our family. along with words of comfort, his sermon offers a perspective of balancing good memories against bad and steps to follow in moving forward in the grieving process. besides the rabbi, it was only my daughter and i who had planned to speak. that awesome kid is three-for-three now, having spoken at both of her grandfathers’ funerals and now at my mother’s. she did a fabulous job and then it was my turn.

public speaking doesn’t phase me much, so that couldn’t have been the reason. at my father’s funeral, i’d gotten choked up a little during one part of the eulogy but i’d managed to get through it and it wasn’t until i returned to my seat that i started to cry. but with my mother’s eulogy, i choked up right at the start of it and was barely able to read the first sentence. the tears had started and i wasn’t able to continue. seeing my struggle, the rabbi offered to finish for me and i dashed back to my seat.

and i cried. i reasoned that it was probably the 3 hours of sleep that had made me a bit more emotional. her’s hadn’t been a sudden death and it’d been a long time since i’d even been able to talk with my mother about anything more than whether or not we liked the dress Vanna was wearing or if the flavor of ice cream i’d brought was to her liking. but i cried like my heart was breaking.

by the time we arrived graveside, i had my emotions back under control. the casket is lowered, there were a few final words and prayers, and then one-by-one, family and friends begin to shovel dirt back into the grave. i received many positive comments on eulogy along with all of the condolences. staff at the country club did a marvelous job with our little event and then the family went back to my place where we would be holding the shiva minyan.

at my place of work, employees are entitled to three days off for bereavement. i’d been off from work for two days already and decided that i wouldn’t go back to work the next day either. i did this in part so that i could accompany my husband when he drove our son back to college later that evening. it had been a long day for all of us and roundtrip, the drive would be about three hours. we didn’t get back home until after midnight.

April 25
there had been no voicemail message from the phone call the day before so i assumed that it had not been about the surgery consultation.  when there had been no call by early afternoon, i called the number for setting regular appointments and they were able to connect me to correct office for scheduling a surgical consultation. my appointment was set for 9am thursday morning.

i spent a few hours in the morning finishing the part 1 post and set it to publish at 2pm. there were a few emails and calls from work that i took care of and i called to arrange for movers to help move my mother’s belongings that had been moved to the board & care home just three weeks earlier. my husband, our daughter, and i headed out for a quick dinner before the shiva minyan that night.

it occurs to me that memories of my mother had begun to shift from those of caring for her during the past three years to fonder ones from earlier in my life. i have all of my parents’ photo albums and we’d put several of them out for people to look through. it’s nice to recall some of the events and to see photos of all of us when we were much younger.

later in the evening, i discovered why there’d been no call about setting an appointment with the surgeon.  several calls had been made both monday and tuesday (before i called on my own) but to my work cell phone that had been turned to silent. i’ve made sure to update my records so that future calls will be made to my personal phone.

April 26
this was my first day back at work and many of my colleagues offered their condolences.  i attempted to meet with my boss to give her a heads up regarding my diagnosis and even though we are in two meetings together, there was no time to speak with her privately. i  booked a time on her schedule for next day to meet with her. there was another shiva minyan that evening so i was still betwixt and between my emotions regarding my mother and what we might learn from the consultation with the surgeon.

April 27
the surgeon we met with had a great “bedside” manner … “sorry that we are meeting under these circumstances but we have a plan and you’re going to beat this”. she confirmed that i have Ductal Carcinoma In Situ (DCIS) and explained that the suggested treatment is lumpectomy followed by a course of radiation. this was different than what the doctor who’d called me on the results of my biopsy had said so we are a little surprised. the surgeon told us that the pathology on the DCIS showed it to be “high-grade”. with high-grade DCIS, the cells tend to grow more quickly and look much different from normal, healthy breast cells and that there’s a higher risk of invasive cancer, either when the DCIS is diagnosed or at some point in the future. there is also an increased risk of this cancer coming back earlier — within the first 5 years rather than after 5 years.

with dcis there is no actual lump, just an area or areas where the cells appear to be present. mine seems to just be in one area and the surgeon says that she expects that the mass she’ll remove will be about 4cm for the dcis plus a 1cm clear margin. 5cm is about the size of a golf ball and pathology on that tissue may show that a second surgery would be needed if a clear margin hadn’t been achieved. the radiation treatment would be 5 days a week for 4 to 6 weeks and it can have side effects, both temporary and potentially permanent in terms of changes to remaining breast tissue.

the surgeon also told us that my dcis was hormone receptor negative which means that treatments which block the effects of estrogen or lower estrogen levels in the body would not be applicable in my case. she went over the recurrence rates with just lumpectomy and how that is reduced with radiation. another option i could consider would be mastectomy which would eliminate the need for radiation and further reduce the chance of recurrence.  with mastectomy, there is then the option for reconstruction, either immediately or sometime in the future.

well, this was all a lot to process and fortunately, the surgeon said we had some time to think. she also offered to put in a referral to plastic surgery so that we could explore the options for reconstruction if i was leaning in that direction. our decision at the time was to go ahead and meet with the plastic surgeon so that we would have all questions answered.

this appointment had been early in the morning so i headed to work afterward. when i met with my boss, i got right to the point and it’s the first time that i say the words “i have breast cancer”. she’s supportive as we discuss some options for covering my responsibilities while i’m out but since there’s no definite timeframe for when i will out on leave, there is time to finalize these plans.

by mid-afternoon, i’d been contacted by the plastic surgery department and an appointment was set for monday morning. that evening was the last shiva minyan we had decided to hold and i start to realize the downfall of everyone knowing about the dcis and especially that i’d had an appointment with the surgeon that day. i’ve set myself up to be very open about the situation which i’m ok with but there are times when i still might be processing my thoughts and emotions.

April 29
the day before, i’d started to look through the pamphlets and resource information on support groups that the surgeon gave me at the end of my appointment. up until then, i hadn’t done any research or much reading about dcis and now the thought of support groups is making the situation even more real, leaving me with mixed feelings about how to best handle the psychological aspects of having dcis. i decide that it’s time that i become more knowledgeable about the disease and options for treatment.

in consideration of the chances for best outcome, i was giving a lot of thought to having a mastectomy. there is no guarantee with any of the treatments options, but full removal of my breast instead of just a “lump” does reduce the risks for recurrence to about 2%. the surgeon had told us that there was no need for prophylactic removal of my other breast and nothing that i’ve read since has said differently. if i was going to have a mastectomy, i knew that i would be opting for immediate reconstruction so i started to read up on what that might involve.

April 30
on this day, we needed to move the last few pieces of my mother’s furniture from the board & care home she’d at been living at when she died. since we have some of her other pieces in our garage and my husband wanted to garage sale at mother-in-law’s, the arrangement with the movers was that they would start at our house to load up the items we’d been storing. the next stop would be at the board & care home and then both loads would be dropped at my mother-in-law’s.

much of my parents’ things had been sold a couple of years ago after my mother moved into assisted living and the house they’d had for nearly 50 years was sold. i don’t remember a time when these last few pieces of furniture were not in the home i grew up in. the room that my mother had stayed in for the last three weeks of her life didn’t hold any memories of her for me but the dresser that had been in her bedroom and the chair that my father had always sat in did. selling their house hadn’t been easy for my sister and i, but our mother’s room in the assisted living facility did serve as a small-scale replica because of the familiarity of the furniture that had been there. now that would be gone too.

later in the day, i’d finished my “a woman i know” feature on my mother and with that, i began to move forward again on my path.

thank you for sticking through and reading to the end. there will be more updates but i’m not sure if i will stick with this diary-type format or not. if you didn’t know already, i’ve resumed my weekly link up. i’d been wrestling with whether or not to continue with my usual weekly themes given what I have in front of me (LOL, in front of me) but that doesn’t change my fondness for shopping and desire to be stylish.  i may have cancer, but it doesn’t have me.

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