Silently Surviving

Update on my health if you’re interested! If not, please carry on by, no worries! (TL;DR: It’s been 1 week since surgery. Pain isn’t too bad. We are in Waiting Mode to find out if the cancer spread.)

So, yeah… it’s been one week since my surgery. Subjectively it feels like maybe three or four days at most. I have been getting lots of sleep, so maybe I’ve only been awake for three or four days worth of a week. One day passes into the next without really noticing. Time is not really divided into Day and Night in this slightly surreal existence of post-op recovery, it’s more like Snack time, Medicine time, Nap time.

First: Surgery & Homecoming. (I’ll cover some thoughts about this last week later I think. I’ve had many wonderful helpers and lots to say!)

Surgery preparation moved along very swiftly once I checked in at the hospital. I had expected long periods of waiting around, so I packed things to do while waiting. I barely touched anything, including my phone. John and I were brought to a small waiting room where I changed into hospital garb, then we moved to another small room where both my breast surgeon and my plastic surgeon made a great many markings on my body, then I was wheelchair rolled off to another room for a radiation injection into my right breast to see which lymph nodes it hits first (sentinel nodes, this will be useful later), then back to the small room with my husband, and finally I was wheeled in the bed alone into the surgery room.

The surgery room surprised me with its utilitarian appearance and size. It looked nothing like I imagined, but I’ve never really been one for hospital shows, so maybe it’s exactly what I would have expected! Anyway, I was there for approximately one minute before it was lights out for me, so I didn’t have a long inspection time.

John was able to go home to take care of the dogs and relax for a bit, after I went into surgery. I was glad he had been given lots of time to go home and try to relax. Hospitals make him a little jumpy, and I knew we would both need him to have some relaxation for the night and next day to come.

I woke up in a small room in the surgical short stay unit at approximately 10:30 or 11:00 PM. I was quite surprised at the time! I had anticipated maybe 8:30, as my surgery was at 4:30 and the room was scheduled for 4 hours. I was in no pain, of course, hooray for the anesthesiologist! They told me that 2 of my 3 sentinel nodes tested had tested positive for cancer, so they had removed the whole lot of them and were sending them off to California (I think 🤔) for further dissecting and analysis. The results will not be available for about 7 business days, so maybe they will be known tomorrow at my follow up but it could take a couple more days. So, we wait. This is a bit anxiety-provoking, but what else can we do? I know worrying about it won’t change anything for the better, so I’m just letting it go. It will all be fine. Whatever it is, we will deal with it.

My nurse, Marissa, at the hospital overnight was *truly* an angel! I stayed in the short stay unit overnight and since I didn’t go up to an admitted room, I was one of only two patients on the unit overnight. So I got some special attention I probably couldn’t have gotten upstairs on a ward. She thought of all the little things that were helpful, brought me chocolate pudding twice, and made good conversation while we were checking things hourly. I found out how good she was when she took her lunch break and the nurse helping me did NONE of the thoughtful little things that Marissa did every time. I was glad to see her come back! I tried to sleep when we changed to having to check everything after four hours, instead of hourly. I wore my sleep mask with Bluetooth headphones (which is SUPER awesome by the way) and listened to the Healing hypnosis audio app that I’ve been listening to for a few weeks while I tried to sleep. Usually I’m out before we are done with the relaxation part of the audio, but that night, though I had it on loop, I never fell asleep. I kind of zoned out and stopped listening to the words but I could really tell I wasn’t in and out of falling asleep, I was pretty awake all night. I found out later that John barely slept at home either. It made for a really long following day!

In the early morning a couple of the doctors from my surgical team stopped by and checked my incisions and my vitals and checked my drains and pain level and then pronounced me good to go unless my pain wasn’t managed. I just had to wait for each of my surgeons to stop by and look me over and agree with the decision to discharge me. So, John arrived and was promptly dispatched to run around the hospital to pick up my pain medications from the pharmacy and my “flack jackets” from the Transitions breast cancer shop within the breast surgery department. We were taught how to care for my drains (squeamish beware!) and by 10:30 AM I was being wheeled out of the hospital and set in a car and we headed home from surgery.

Coming home from surgery requires a crash course training for some semi-basic medical care that will need to be done twice a day until the doctors say you can stop. In the hospital I had no problems with the ick factor and quickly learned the ropes, John was a little squeamish but followed along. At home, John has been great at all of it and I have gotten a bit squeamish; we have had to stop mid-way a couple of nights for me to sit down and cool off from my sudden lightheadedness.

TMI Alert from here on, beware if squeamish!

I have tubes coming out of my body, two on my right, one on my left. They are attached to little pod drains that collect the lymph fluid from the body where the surgery took place, in my case, my chest, both sides. The drains look like little hand grenades kinda, and there are these camisole vests that you can wear after surgery and they have little detachable pockets for the drains, thus called a flack jacket, at least they are called that by my friend Terri. Makes sense to me. The drains are removed from the vest and emptied and measured twice a day. The color starts initially looking like blood, which didn’t make me queasy at all. It has since lightened to a pale watermelon color because lymph is yellowish. To be honest, it grosses me out. John is a champ!! The goal is to get the amount of liquid being drained down to less than 30cc in a 24 hour period, I think. We are still a ways from that if the 30cc is cumulative for all three drains. If it’s per drain, we are already there. We’ll find out tomorrow at the follow-up appointments with my surgeons.

I ran out of oxycodone today, so I’m just crossing my fingers things don’t get too painful! Apparently I’m supposed to be good from here on out with extra strength Tylenol… okayyyyy. I hope so! 🙏🙏🙏 I’m hedging my bets with CBD oil intake and edibles on the regular!! We’ll see how tonight goes. I definitely have no desire to be on narcotic pain medications any longer than needed but I’m having some anxiety about this! I suppose if I get high enough with THC to not care about the pain, that works.

Also, because I didn’t have enough to deal with, I got my monthly cycle the day I get home. WONDERFUL!! Good sense of humor there, Buddy! I am not the only one I know that had this happen the day after surgery, so I don’t know if it’s coincidence or if the surgery somehow is related, but I’m chalking it up in the “possible” column of: Things They Didn’t Tell Me Ahead Of Time.

I’ve had some really wonderful helpers this last week and I’ve been doing a lot of self-care that I think is worth talking about, so I’ll do that next time I write. Thanks as always, if you are still reading this lengthy post! Thanks for all of your prayers, good vibes, happy thoughts, remote reiki, and possibly a goat sacrifice. I feel very well taken care of and well loved. I feel stronger with you with me. With all of this at my side and as my foundation, how can I possibly fail?! We’ve got this guys! I really believe that! Until next time, I’m yours truly.

UPDATE on my health if you’re interested. If not, carry on!
(TL;DR: all’s well, surgery getting scheduled soon.)

“All is well, until I hear definitively that it isn’t.”

The ultrasound follow-up appointment last week (to the breast MRI) came up with no issues after all. Biopsy was cancelled, as it was not needed. That was a huge relief all around.

John and I met with my plastic surgeon as well, last week. I really felt heard and seen, my thoughts and my decisions were listened to and not diminished or minimized in any way, and so I’m very happy with her as my surgeon.

The treatment plan is still for a double mastectomy with reconstruction, but it will be done in a couple of extra steps. The reconstruction will not happen until later in the process, after the mastectomy has mostly healed up. She will be at the mastectomy surgery to be involved and have accurate information for my treatment, but she won’t be doing any surgery at that time. After a few weeks, she will then insert skin expanders. They look like flat donuts that get filled with saline, in steps, to encourage the skin to stretch and make room for the implants. Then I’ll have a third surgery to put in the implants. The exciting part (strange word choice perhaps) is that the implants will go above the pectoral chest muscles, not behind!! This is apparently not viable for everyone, but is for me, and the people that have had this have had an easier recovery and are happier with the results, according to my oncology nurse navigator.

All of it is still overwhelming and scary, but I’m at peace with the process right now. Everything could still change on a dime, when they do the surgery and can see what’s actually going on inside the breast tissue and the lymph nodes that receive the lymph from the breast tissue (located in the armpit). If there is cancer found in the lymph nodes that would mean the cancer has metastasized outside of the breast tissue, or at least is trying to get out and get into mischief elsewhere in my body. The oncologist surgeon thought this was very unlikely, but nothing is ruled out at this point.

I’m not really scared about the cancer at this point. I’m scared to have surgery! Until a few years ago, I’d never had any sort of surgery, and even now i’ve only had a couple of laparoscopic surgeries. This time they are going to cut me open, cut things out, rearrange things, and stitch me up again. Then, they’re going to cut me back open, put things in and stitch me back up. And then, they’re gonna do it again! I figure by the third surgery I’ll be a pro at this, but right now I’m pretty nervous about the cutting open and the aftercare. Seems kind of silly to be nervous about the aftercare, but here we are anyway. “I don’t know what I don’t know”, right Bev? And Linda. 😍

Because of the change in surgery requirements (delayed reconstruction), I’ll need a shorter time in surgery and a shorter time in the hospital afterwards. Those are both pluses. I meet with the genetic testing person this Thursday to find out what was found out through the genetic testing they did on my dna, but at this point I’m not expecting it to direct my surgery, as it might have if I was planning to just do a lumpectomy. It might direct my future care, as the same gene variants that are known to be found in high occurrence of breast cancer are also found in a high occurrence of ovarian cancer. Ovarian cancer has no real screening process, so we might decide to remove the plumbing, as it were. My step-sister (Selena) died of ovarian cancer last year, the survivability of it is not great, and I want no part of it!

I’ve requested waiting for surgery to be scheduled AFTER my daughter’s (Chantelle) wedding and reception in mid-September. I would ideally like to have surgery at the beginning of October. The last week of the month is my busiest time at work and is not the best time for me to be down for the count. However, … we do what we must, so if that’s not workable, we’ll do what does work. They don’t like the idea of pushing my surgery out too far, but really it’s probably been growing for a few years, so hopefully the few weeks won’t change things. The growth rate of this cancer is very low (5%), so it shouldn’t be an issue.

I’m not a medical person, other than what I learned for massage therapy, so I may have some of these particulars not *quite* right. But, to the best of my understanding, this is where I’m at now. As I said earlier, I’m at peace right now with the entire process, and feeling optimistic about the treatment plan.

I’ve increased my self-care in increments: an extra massage per month (thanks Kathryn!), adding acupuncture (thanks Marianna!), continuing personal therapy, trying to meditate, using hypnosis applications for relaxation, healing, and positivity, spending time outside in a peaceful environment (my wonderful backyard!). Giving myself a month to eat my feelings (Hello, Ice Cream, you beautiful source of comfort!) was okay with me, because it was what I felt I needed then (like, “I’m stressed out! I’m eating the damn ice cream!), but now I’m about to embark on a healthier eating plan. Because, self-care isn’t just about doing what feels good. Self-care is choosing the best thing for me, even when I don’t like it. I love sugar. I mean, I REALLY love sugar. But, it’s got to go! Empty carbohydrates have no place in my (future) healthy body, no more than once in a great while. That means I’m going to have to eat right and step it up and figure out how to exercise without throwing in the towel. I’m told I will need to incorporate nutrition and movement in ways I have resisted thus far. I’ll figure it out eventually. 🤨

If you’ve gotten this far, thank you for taking the time and having the interest to read my words! And, a heartfelt thank you to so many of you, for reaching out to me personally. I really appreciate the evident care and love being directed toward me. It gives me strength to know I’m not even close to being alone on this journey, not even in the moments when I alone have to make what I feel are my best choices for treatment and care. 💗

UPDATE on Health Information / Introspection / Thoughts on this process of breast cancer discovery and treatment. If you aren’t interested, please carry on!
(TL;DR: MRI leading to ultrasound and biopsy of the other breast, results TBD)

**I will not fall apart!✊** However, today is a struggle for me. I was blissfully unaware during my acupuncture appointment this morning that I was getting a phone call from the hospital, telling me that I needed to come in for an ultrasound and biopsy on my other breast.

I put my phone on airplane mode for my appointment to avoid any interruptions that would make me fret about what the notification was. I spent the entire appointment coming up with the names of unusual animals for every letter of the alphabet. So, instead of C is for Cat, I said C is for Cheetah, that kind of thing. The intention is to keep my mind fairly in the present and solving a puzzle instead of worrying over the past or the future, which is really important for me right now. I have pretty significant anxiety at the best of times. Right now it’s working overtime.

Then, I got in my car a few minutes after my appointment and discovered I had a voicemail, with no other information besides “these are the things the doctor wants you to come in for, here are the times and dates we chose, call if you can’t do those times or dates, otherwise see you then.” Wait, what?!? 🤔😳😣

I had my breast MRI done yesterday. Not a procedure I can recommend. Review: 0/10, would not do again by choice. I’ve had lots of MRIs over the years, but none of them were that uncomfortable. I had to lay on my stomach with my arms stretched out in front of me, like Supergirl. (WHOOSH!) I was laying on a contraption/form that then goes into the MRI machine. There were holes in the…. form?… that my breasts fit into, and my body was on foam padding that allowed my knees to bend a little. Not too uncomfortable, should be okay for 45 minutes, I can do that. THEN, they put me in the machine. It’s basically a tube, about the length of a person, if you haven’t had an MRI. The machine then closed around my hips and abdomen, squeezing me to the point that i could just barely take a deep breath. Then they say “try not to move”. Uh… yeah, definitely not moving. I’m barely breathing!! But then the body says “i can’t breathe, i must now breathe harder and faster than normal because i need extra oxygen!” They tell you to try to relax and zone out as much as possible… RIGHT. I’ll get right on that. *eyeroll*

If I understood correctly, they took a bunch of images, then injected a contrast dye into my veins and took the same bunch of images. This helps to clearly show breast tissue details. There is the possibility of false positives, meaning they might see something that looks like a tumor or atypical, but upon biopsy is benign. So, this definitely doesn’t mean I have bilateral breast cancer! But, it might… 👀

“It might…” is such an anxiety-provoking concept. Ugh. 🧠

I go in on Monday, August 20th for an ultrasound, and then again on Thursday, August 23 to do a biopsy. So, clearly, they have seen something for which they don’t like the look and want to get a physical sample of to test for cancer cells.

Well.

Okay then.

“All is well, until I hear definitively that it isn’t.” This is my new mantra; I picked it up from another patient that attends the breast cancer support group at the hospital. 💞

I will try my very best to enjoy my weekend! I hope you all enjoy your weekends! Thank you for your love and prayers and wonderful messages to me. If you sent me a personal message, I promise I’ll be getting back to you. Just a little overwhelmed at the moment, but I am truly grateful, again and more. 😍 💗💖❣️

Update on my health for those interested. If not, please carry on! (TL;DR: Stage 1A, surgery TBD)

On Monday, August 6, I went to meet my breast surgeon to talk to her about my cancer and my treatment options. I was relieved that my surgeon was a woman. Not that I wouldn’t trust a man, but I felt better knowing we had the same equipment and hopefully a better understanding of and empathy for the emotional minefield that comes with the possibility of losing one’s breasts and what that might mean to me.

I went into the appointment with a treatment outcome in mind, but I wanted to be open to hear what she had to say. John accompanied me, and having been advised to bring someone who could take notes and listen to the doctor without a WHOOSHING sound rushing through their ears, I brought my longtime bestie, Sonja. She took 3 pages of notes. I also voice recorded the meeting.

I have a small (1.4 cm) tumor that they have preliminarily staged as 1A. This is very good. The doctor’s recommendation was for a lumpectomy followed by radiation, probably no chemotherapy needed. The words radiation and chemotherapy scare me, so that’s when the whooshing started. In my mind I thought “I DON’T WANT RADIATION AND CHEMOTHERAPY!!!!!” and I leapt back to my treatment plan: double mastectomy, no radiation or chemotherapy! This was about the time I stopped listening very well.

Unfortunately, or fortunately, I’m not sure which, I did hear the part where she said that mastectomies don’t rule out chemotherapy. This is where fear set in. I could feel the tension settling into my frame. In the fight or flight response, my conditioned response is actually to freeze. So, I felt my body freezing and my brain. I was thankful immediately for the voice recording and the notes that would be available for me, for when my higher functioning brain would kick back in.

So, I was partially successful. I listened, and I asked some questions, and then I still wanted the same treatment plan. I asked them to schedule for a double mastectomy with reconstruction. The doctor advised that it would take awhile to get that on the books because the operating room has to be scheduled for a long period of time, and both the breast surgeon and the plastic surgeon have to be available for it.

In the meantime, I’ll be meeting with the plastic surgeon for more information on what I can expect from reconstruction. If I decide to scale back on what I want done, it’s easy to take time away from a scheduled surgery. It’s much harder to add a few hours on to a surgery that was going to be for a lumpectomy. So, I decided to plan for the most surgery time I would need, then scale back if I want to later. I’m already second-guessing the mastectomy idea after reading up on the different treatments available. The fact that I can get reconstruction on both sides so things are symmetrical, without having to do double mastectomy is appealing. But, it will depend on some other factors… Such as the following.

When the doctor heard that my maternal grandmother’s double mastectomy for breast cancer had probably occurred pre-menopause, she decided I needed genetic testing. When she did my exam and I mentioned that I had recently (a few months earlier) had a lump that I thought was a lymph node along my collar bone just above my tumor (though I couldn’t locate it just then), she decided I needed an MRI with contrast to get a better picture of what might be going on. Perhaps this is more than a simple Stage 1A tumor. Perhaps a simple lumpectomy will not be enough. I need more answers.

I went home and called my aunts, to see what they knew about my grandmother’s cancer, when she was diagnosed, what she was diagnosed with, etc… NOT MUCH, as it turns out. Apparently they were just told that their mom needed to go get some rest for a couple of weeks. They were still at home and in school at the time. My mom was the oldest child and she can’t answer any questions anymore. She had told me long ago about the mastectomies, but she was very unclear as to whether her mom had actually had breast cancer. I had come away with the impression that maybe she hadn’t actually had cancer, that maybe it had been preventative, or a scare that they decided to handle with an emphatic response.

Let this be a lesson: If this kind of information isn’t freely given out in your family, ASK your parents about your family medical history. Write it down somewhere you can find it again. Eventually you’ll probably need it, and then you won’t struggle for days like I did to fill out the family history questionnaire for genetic testing!

After I spoke with my aunts Mary and Margaret, I gave my mom’s cousin Joan a call. My aunts had both mentioned she’d probably know more than anyone else about this. I had never spoken to her before, though apparently we’d met when I was young. We talked for over an hour and boy did I find out that cancer runs in my family!

So, now… I go to get an MRI and Genetic Testing (not exactly sure what this entails yet) this coming week on Thursday. I’m a little nervous about the outcomes of these tests but I’m glad they are looking further than the immediate problem.

On Tuesday, I went to a Breast Cancer Support Group for patients and survivors. It was really good, but a little intimidating to see what these women were going through. I told them about my triple whammy of ex-boyfriend dying, father dying, and cancer diagnosis within 1 week. Everyone’s jaws dropped. I told them that I was a little concerned because so far I hadn’t really cried about any of it for very long, and I’m a crier. I mean, I cry at commercials all the time! People say to me, “you’re too sensitive!” The group told me it will hit me when it hits me, and to just be cautious about how much I took on in the near future. To be aware that I could get overloaded easily and to have room and space in my life to fall apart for a little while if I needed to. To build the best support system around myself that I can. I had lunch with a couple of them after the appointment and they gave me a lot of good information and wisdom.

Maybe too much… I left in a great mood, but by nightfall I felt completely overwhelmed. When I get overwhelmed, I cry, I withdraw, I’m irritable, I want to be alone, and I write. In this case, I mostly got quiet and withdrew into myself. It lasted a few days.This was hard on John and on me.

John is also struggling a bit. He’s helpless to do anything but be supportive. He can’t fix it. He’s an engineer. That’s what he does. He figures out how to make things work. But he can’t fix me. This makes him also withdrawn and irritable. John also needs a support system. In our lives, I’ve been the one to hold space for and handle the emotional issues. When the kids were younger and troubled, I handled the emotional impact, he handled logistics. But I can’t handle the emotional aspect of this for him. I am full up, handling the emotional aspect for me. Buckle up babe! This could be a bumpy ride!

That’s all I have to tell you for now. If you made it this far, thank you for taking the time and having the interest. It is tremendously helpful knowing I have a small army at my back, people that care about me, that are available to me, that want to help. Thank you, thank you, thank you! I’m so grateful! People have messaged me and called me and it’s been a tremendous gift!

(p.s., the family information tree got activated [though I am not on it, must fix that] after I spoke with my mom’s cousin, and I heard from my somewhat long lost 2nd cousin, Kristin Leaf, which made me super happy!!)