Part 30: Ported From Angel Network Posts: Blogging for Breast Cancer, Second Round
This should catch you up…I didn’t feel it was prudent to post while I was away in the hospital, so I posted on a private page. Thank you to all the people who joined that network, who commented and cheered me on.
February 19, 2023 at 3:47 PM
A Note Of Thanks
Not my regular blog as you can see, but I have included you in a group of people who are very dear to me, Some live near, some live far, but everyone is close.
As you know, the most unexpected of events will be taking place: another mastectomy, 19 years after the first one: during a “prophylactic removal of a benign issue,” aka “a papilloma” an invasive lobular carcinoma was found in the surrounding lumpectomy area. Just the size of a pencil point. It was luck, sheer coincidence, serendipity. But, whatever, I have chosen to have a mastectomy/reconstruction, again, and I am assuming that again, I will not need any subsequent treatment.
February 24, 2023 at 3:56 PM
T-6 Days And Counting
The most familiar phrase in The Game of Thrones was “Winter is Coming.” There were visions of impossible storms and men of ice with red-glaring frozen blue eyes eyes who could defeat the vulnerable in a flash. The show was so convincing to its actors that after the series wrapped, after about six years, the actor, Kit Harrington, who played Jon Snow had a breakdown. it sounds like his boundaries between reality and the show blurred. It was so intense and probably frightening that the job started to eat away at him. And despite his real post-show marriage to co-star, Rose Leslie, it was a while before he could get his life together.
The point is, experiences can get to you. Cell memories are stored. The walls of time get broken down. Sometimes it is damn hard to just carry-on. Since I spoke to my surgeon after the 12/8/22 “prophylactic” surgery, when the findings were presented to me, I have been on the edge of a different precipice each day. The what-if precipice, the who-will precipice, the how-will precipice, the where-will precipice.
I’ve been climbing up a mountain trying to get to the apex and plant my flag. Now the top of the mountain is in view and it scares the shit out of me. and, because cells have memory, because I’ve been there before, though many years ago, because I remember the nightmares caused by days of morphine, I fall inro anxiety. Interesting that the drug is called “morphine”: it changes perception. It evoked such vivid colors, designs and tapestries and then morphed them into overly realistic images. It’s a place I never thought I would return to. If I had a choice I’d never go back.
Every time I think I have my ducks in a row, I create another list. I think more about the people who will be staying here, hired and family, maybe even friends, than I do about myself: it’s more about their comfort than my own. I have a lot to learn.
And, everyday I fight the terror. Yes, the doctors are great…I’m in good hands…it will be better than last time…throw the clichés at me, bring ’em on!
But there is one really good thing to consider: unlike in The Game of Thrones where “winter is coming,” we are approaching March.
Spring is coming.
I’ll have a garden to tend.
February 28, 2023 at 10:15 PM
Loveless
Loveless
Lo Moon performs during a Live At Noon concert.
How have over two months gone by since that “pencil-point invasive” diagnosis? Wasn’t I just thinking I had five more weeks of almost calm?
It was just a minute ago that we were at “six days and counting?”
There is one more day until the final countdown to “the day.” My mind was so scattered earlier I had to lie down. Too many lists, too many appointments, too many thoughts. Too tired.
Yesterday I had three appointments, one after another, actually two were bumping heads like in a Venn Diagram with a time overlap that caused one of the appointments to call me. “I’m here, I’m coming, from another appointment, I’m just crossing Northern!,” And Evan maneuvered us into one of the most hair-raising merges, across a lane and into the next parking lot under another building. The Northern Boulevard mecca of health. It’s where all of the doctors seem to be.
Evan had taken me leap frogging up Northern Boulevard: first, to 8000 Northern for the PCR test, then to 1000 Northern Boulevard to get clearance from Dr. Lowell, who went over my chart and recent hospital findings to validate his consent for surgery. He also validated my choice, again, for the mastectomy: He sent me off with a hug. We know one another since Robert and I became his patients when we were all in our thirties. I know his wife. I know the staff. I’ve watched Dr. Lowell’s son, Matt grow up, via his photos. There was once a picture of him on the bookcase behind Dr. Lowell’s desk. Matt was about eight years old at the time, the same age as my son, and in his hockey uniform. Evan was likely in his Little League uniform. Dr. Lowell and I would compare notes on our kids.
Matt is now a world renown musician with a group that has won awards and that tours the world.
Lo Moon.SONY contract and all. His group made it. Kind of a mystery how these things happen but it all comes down to focus and hard work. Listen to their first hit: Loveless. Then hold that thought.
After my dash across the Boulevard to the plastic surgery group for the final meeting and consent for reconstructive surgery, the usual “before” photos were taken. Mastectomy porn. This time around a new breast is being created via fat from the thighs. They can have it with my blessings.
I was sent home with a goody bag of weird items only a patient going through this would need. It included someone’s created seatbelt padding strip, a bag of syringe measurers that will be used to extract whatever product from my four or more drains (and all have to be measured and logged into a chart. I remember doing that the last time, almost nineteen years ago,
Actually Robert did it for me.) There was a created belt from which four pouches could hold the drains. What an outfit of dangles, like something out of a jungle. A multi-drain holder, now that is progress.
In case you don’t know, drains are like hand grenade-sized hard, clear plastic balloons that are sewn into you via tubing and they pull down as they fill up until you want to scream and yank them out. So, after all of these years it seems like someone invented a method to alleviate the tug.
Oh boy, someone even included a big insert on how to drain the drains and log the data. With an included chart, yet!
And today was the visit to the surgeon who has been with me since 2004. She’s a wonderful, warm, human who gives a damn. I was buoyed by the thought that the lymph nodes will show up “clear.” That procedures have come a long way, that they are more streamlined. I am psyching myself up to be ready.
Getting back to Lo Moon … Matt Lowell got to where he is now by believing, striving, practicing and battling his way to where he should be.
We battle change, we battle fear. We battle beliefs and inner voices. But with all of this energy we eventually get there.
I will get there.
Take my hand
In belief we trace our steps
Understand
No relief in silhouettes
Battled myself so many times
What I was isn’t what I want now
We can seek denial and search for miles …
Loveless? Not I.
I have you.
March 1, 2023 at 10:12 PM
Hospital: 5:30 AM Tomorrow Morning.
Blast off is at 7:30 AM.
I will see you on the flip side and all will be well.
Good night!
March 2, 2023
4:00 Am-Ish. We’re UP!
The day is here. Has arrived. Been waiting for this since December. Almost a whole season has gone by. Never thought. I’ve been suspended. Floating through the days, counting down. “Not today…not today…still 5 more weeks.” SURPRISE!
Dr. Bank the plastic surgeon left a garbled voicemail. (Call didn’t go through, number not recognized by Verizon) Hoped I’d get a “good night’s sleep. I know I will,” he said. Klonipin helped. No water, no food…who could partake, anyway?
So here it goes. LIJ Med Ctr. by 5:30 AM. Checking bag. Taking too much stuff.
Thank you for all of the phone calls and messages of support. Almost got my warrior clothes on. Unconsciously put on a pink sweater.
at 6:05 AM
Two places to wait.
With the crowd.
Without the crowd.
I chose without.
March 2, 2023 at 9:26 AM
Susan Is Undergoing Surgery Now
Hello friends,
This is Sue’s sister, Laura.
Just letting everyone know that Sue is now undergoing surgery. I will keep you posted with any important details that may come up.
Thank you for your emotional support.
Love.
March 6, 2023 at 2:15 PM
So …
Apparently the surgery went well. I ended up in recovery. They found a problem with two with blood vessels and brought me back into the OR to fix the connection of the blood vessels and gave me a transfusion.
Well, that was a little daunting I would say. They put me in a lovely room, which is very well designed. The staff is incredible here and I’m so grateful to these women who are wonderfully compassionate.
Weird. The TV keeps going on by itself even though we thought it was fixed yesterday. Very strange. especially at 3 o’clock in the morning.
Most women go home after three days I would never have been able to do that, just too weak.
I still need to walk around the hallway and get my strength up. I always have to have somebody accompany me to the bathroom. I have four drains pulling down, but they may come out at my appointment on Friday at the plastic surgery group.
Trying my best, but this morning I don’t know, I don’t know what happened. I had a panic attack had an EKG. They gave me a Xanax, feeling better, but my heart goes into pounding mode… guess I have to realize that this was a lot and just embrace it.
That’s the backstory. I might be going home tomorrow; they thought I was going home today. The agency sent a poor woman from Brooklyn all the way to my house in Queens to take care of me and I saw her ring app, standing at the door, wondering why nobody was home. There waere so many miscommunications. It was baffling to me,miscommunication after and we’ll get this sorted out at the end of the week I assume, and I just want to sleep four hours at a stretch. And not 2, awakened for meds and then a tv hoing on.
Sending everybody my love, thanking everybody for support and embracing everybody for being there emotionally. Thank you thank you thank you love from.
Sue
March 7, 2023 at 11:36 AM
Waiting To Be Discharged …
Something out of Samuel Beckett…
Remind me to tell you about the too-smart TV;
I think it is related to HAL. This has been a journey much like 2001.
March 13, 2023 at 1:37 PM
Eleven Days In
Many thanks to all of my bosom buddies who have been contacting me, or trying to. Life has kind of spun and rolled away from me and I am just getting through the days.
I had no idea what to expect going into this, I mean I have had a reconstruction before but THIS reconstruction is something else.
I have two wonderful aides. I can’t imagine how anyone could possibly get through this withot some sort of professional help. Even with visiting nurse coming every few days, someone is needed to be available to provide security, meals and just plain help.
I washed my hair for thie first time in almost two weeks. Dressings have to constantly be changed and monitored. Fatigue is always buzzing in the background. I don’t sleep well.
My entire upper quadrant is an unrecogognizable, swollen …I don’t even know what to call it. It scares me. One drain has been removed from that site, but, from where fat was harvested for the new creation, I have been sliced and am constantly draining with two other drains via a cut to the groin that extends to the back of my thigh. Try sitting.
Anyway, it IS getting better, and I am trying to think ahead to the time after the aides’ two weeks are up to the possibility of being alone.
Not sure yet.
In the meantime I am trying to stay positive and stay in the present.
Again, keep the positive energy coming.
With gratitude.
Sue
March 15, 2023 at 12:08 PM
Thirteen Days
Independence vs. Vulnerability: I want to be alone, I don’t want to be alone. (Maybe that is what greta garbo said) I know I shouldn’t be alone.
I have assured myself that two weeks of an aide in the house is the minimum.
I have an aide who is younger than my son and who runs about like a cyclone. Then there is a mature one who is slower and more proactive. I have the inner fight with my need to control. I can always do something better, thinks the controller: do it this way, turn it that way, wipe the counter, sweep that stuff up, turn the teakettle the other way lest the whistle blow off and bust the glass tiles; everything is impending doom.
This is the first time I am pretty much alone, in my office with an aide downstairs, at $500/day. But that’s how it is: they don’t work every moment but they are “there,” here.
I keep asking myself about what my future will bring. A friend whose husband no longer fares well on their stairs of their home decided that they should move. They sold their home in almost minutes. Luckily they have another home to move to: The shoulding began: “You should move to an apartment,” said she. These are the kinds of things that people shouldn’t say to someone who is recuperating. Actually these are things that no one should say. It is not up to you what someone should or shouldn’t do: THAT is your inner judge speaking. Keep the shoulds to yourself. It implies control, and I have learned that you can’t control a damn thing.
To wit: I instructed the younger aide on how to use the juicer and we made a sizable amount of juice. I reached for mine on the table and WTH! I knocked it over. Something that rarely happens, that kind of mishap. But in the land of reality there are mishaps. So we shared a lesser amount.
There was no control. Or perhaps lingering anesthesia was lurking to give the illusion and then supply the truth. You are not functioning on all 8 cylinders.
Truth is also: I am tired. You have to understand this was a multi-part surgery and in addition to my chest being carved, a whole roll of my upper thigh was cut almost all the way round, right at the groin, to construct a breast flap with what was harvested. Stitches all around, try to sit with that. Or go to the bathroom…can’t get up and down stairs. Luckily I have Robert’s chair lift. And those three drains that are left still pull from the two sites. So far today, no leaking. Thankful. I was forever changing my clothes.
I have posted some of the true facts about the procedure because most people can’t imagine, don’t want to imagine. Who would?
For now, I live in the land of streaming.
The lives of others’ seem to be more manageable than my own.
Sue. Thanks for being there.
March 19, 2023 at 1:57 PM
Seventeen Days In.
Gratitude begins this post.
I am grateful for all the well-wishers and surprises at my door. A recent visit to the plastic surgeon left me with just one drain. One drain, and wounds that are pulling and stretching and reminding me I am not “there” yet.
Yesterday I could barely function: I was beyond fatigued. The “younger” of the two aides (who rotate every few days) barely had to do anything, still I knew needed someone in the house to be “there.” “There” means a space is filled in my environment. But, “there” doesn’t mean all is at peace.
I didn’t know what to do for dinner, I felt it was my responsibility to be the provider. I was too flummoxed to deal with the food apps and on-line menus. When I thought the order was placed there were error messages. NO ORDER.
No food. Getting late. No food. Not that there was no food in the house, but I had no strength to cook or to direct someone to do so. I felt tired, inadequate.
Old. I felt old. I felt I was my mother. I felt I was telling my mother that she needed the aide, she needed help, had to let a stranger in. She was me…Then I would be glad to leave her, closing her door, walking to the elevator, seeing the elderly residents waiting outside the dining room… but in leaving I had to deal with another person, a husband in decline.
All I wanted was a burger and eventually the said aide (who had a car), made a run to Wendy’s, for the coveted burger. A small hunk of meat between a couple of buns. The big deal that solved the problem.
Here, I was worried about what we both would eat. Most agencies tell you that you are responsible for meals and if not, a cash equivalent. There I was in my mother-role and becoming agitated.
People who see me are so happy to observe me walking around the house and becoming more like myself. But for me, the old worries filter back in: my biggest issue is “how will I get there?” Yes there are services and ways, but I am frozen. It is as if the dot of cancer was a blip in the time frame, a mere distraction, but the reality is, I will soon be back to where I began. The confusion and anxieties are returning. I won’t have an aide with me much longer, a person who is “there.”
I am still trying to figure out a new life as a single person with a living partner.
March 21, 2023 at 11:02 AM
Just When You Think …
Lucy, my aide, and I were watching some old Ted Lasso until late and then it was finally time to conk out. I went to the bathroom, (it’s very hard to sit, the pressure on the back left leg incision has been hell) got up and thought I had missed the bowl. Fluid was pouring out of me. I’m thinking “well how in the hell did that happen?”
Turns out the entire back incision opened up. By the morning I was bleeding all over.
Luckily, Visiting Nurse answered my call and came right over, and I called the doctor’s office; the Physician’s assistant called back and I have a 12:30 appt. with the doctor.
Not at all what I expected. Never thought I’d have to continue with the aides (costs a fortune but what can you do?) Never imagined any of this.
But grateful everyone is rallying around and at some point all will be OK.
All will be OK.
March 23, 2023 at 11:14 AM
Feeling Crotchety
I’m sitting here in the recliner waiting for the visiting nurse. The problem is that the incision which actually goes around half my upper thigh, used to harvest skin and fat for the creation of a breast, has opened. I felt the wound and was appalled: if i could take a look I’d be able to see clear to my tonsils. It is a HUGE, deep cavern.
I am constantly soaking wet from fluid, constantly changing clothes. Constantly getting a Brazilian wax from the tape situated in this very precarious location. Constantly in discomfort.
The visiting nurse service can only come once a day and I need to have these bandages changed at least three times a day (and it is not the aide’s job to do so but thankfully, last night the aide on duty attended to every need.)
I was assuming I could let the aides go this week and at $500 a day that would be a big relief. However, now I realize I can’t be alone and I need someone to do this wound care.
I am hoping this can be resolved by the next nurse who is expected to arrive in about an hour or so. I don’t know what the answer is.
I am feeling extremely vulnerable.
March 24, 2023 at 9:50 AM
Daily Activity: Waiting For Visiting Nurse
Yesterday, a different nurse came who subbed for the usual one on her day off. She was able to pack my dressings so that I almost made it through the night, dry. They changed the whole paradigm to a different, more absorbent waterproof stuffing. This nurse was brilliant but not my regular and likely won’t be coming back but who is in touch with my nurse. I like the brainstorming aspect.
What I don’t like is that this can take a LONG time to heal and I don’t know how long I can keep paying an agency for an aide’s services.
I have a miserable appetite and that really isn’t new, but it is taking its toll. I am supposed to be eating protein. I don’t feel like eating anything.
March 25, 2023 at 11:57 AM
What The Birds Told Me
The Krauter Vesuvius Plum Tree has began to bloom but the number of blossoms seem pauce. That didn’t bother the birds: there were cardinals and bluejays swooping into the branches and at some point a cardinal came flying right at me as I sat on the edge of my bed; then it bypassed the window and flew over the roof. The reminder was that things are evolving, the birds are back, the tree is transforming.
And so am I.
For whatever reason I had a weird sort of migraine (?) panic attack. (gold zigzagging lights, peripheral blue violet spheres) while the Visiting Nurse was here. I was trying to figure out how I would get along without help and I guess it got to me: overthinking brought me to vertigo and a pounding heart…an irregular pulse, the blood rushing from my head. I suppose that was my body telling me that I was not ready to be alone.
Was it yesterday that I had a waking dream about my mother? My mother has been gone since November 6, 2020, a couple of weeks prior to Robert’s final days here before hospitals, nursing homes and Covid.
Here’s how the mind works. I seem to feel I was on some sort of mall balcony and my mother was below possibly walking with my younger sister, as a child. (I had once been in Florida and had gone shopping with my mother in a mall).
I tried to call her on my phone but she didn’t respond: She was wearing a 1950s gold watch, which unlike an apple watch, didn’t alert her. The watch was something she was gifted while attending a (1950s) TV show. They did that in those days, give out gifts. The watch was a Benrus. The show was Meet Mr. Willis. A talk show.
So the Benrus watch indicates the past. My association with getting messages on it indicates the present. Her unavailability indicates her passing and the many times during my childhood that she didn’t hear me, or wasn’t “available.” The tree is the cycle as are the birds, visitations of the little souls who entertained me and perhaps are my hope that someone, somewhere, through all of this, is looking out for me.
I keep thinking about how lucky I was to find what was found the way it was found, that it is gone. That all that is needed is to heal.
And the Benrus watch and the association to the present is an indication of time. The need for patience. And that well, my mom, is in fact watching over me from afar. Somewhere.
Or as close by as a red cardinal or a bluejay.
These posts are a new series: the second round of breast cancer after nineteen years.
The original series index begins here
The original series index begins here
The previous post is here
The next post is here
Sue,it has been awhile since I could e-mail!!!I have been trying to catch up with all about you.I just be so glad when you are all well. I wish you so much good wishes and happiness.Love Audrey,pss prayers
Sue, I can’t imagine what you’re going through, physically and emotionally, not to mention financially. As March comes to an end, I hope this situation stabilizes soon so you can start to live again. I’m so sorry for what you’re enduring.
Sending prayers, positive thoughts and air hugs! 💕
Clapping and sending loving, positive thoughts!!
❤️ Jackie
Heal well, hugs for you
Your blog is so real!! Thank you!! And now much more rest!! 😉😘