Monthly Archives: September 2018

Cancer: Waiting Mode

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.

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Bilateral Mastectomies: Scared, but Determined

Update on my health, if you’re interested, if not, please carry on! (TL;DR: Surgery 9/19/18, I’m scared, but determined!)

September 19, 2018. That’s the date I’ll be going in for surgery. I’ll be having bilateral mastectomies with delayed reconstruction. My surgery will begin at approximately 4:30pm, and then I’ll be staying the night in the hospital.

I’m at peace with my decisions about treatment, but I’m pretty scared. I’m scared of quite a few things… 

I’ll be honest, I’m mostly scared of pain. I already have a bum knee and a bum foot on different legs, so mobility is occasionally an issue for me already. I hear that I’ll be unable to lift my arms for a week or two, that just walking to the bathroom will be difficult.

I’m also scared of how my body will look, even after reconstruction, and how that will make me feel. I’m scared of how I will feel about my body’s less than sexy scars and new dimensions.

I’m scared that I’ll gain *more* weight. I know the typical picture in my head of a cancer patient is that they lose weight, but commonly breast cancer patients will gain weight.

I’m scared that the surgeon will find more cancer. I’m scared that if that happens, I will be told they want me to do chemotherapy. I don’t think poisoning my entire body is a good idea. I don’t think the benefit is always worth the misery of chemo. It would have to be a really big difference for me to do that. I’m scared that I’ll have to fight everyone for the right to make that decision.

I’m scared that I’ll get lymphedema (a common after effect.) This is a swelling in the arms from extra fluid in the area that can be very painful and not good for you.

I’m scared that I won’t be able to do my job for awhile and that I’ll drop the ball on something important. I’m the office manager of a small engineering firm and there isn’t any other purely support staff. Everyone else is either an engineer or a drafter, not trained office support personnel. I think it will be okay, but the idea of things not working out like I think they will definitely scares me.

I’m (minorly) scared that the financial impact will be difficult to take, as we get hospital bills and my hours at work are reduced. We are in the extremely fortunate position of having enough money to get by without scrimping. We can go out a lot (a fact I’m sure does not go unnoticed) and take a vacation every once in awhile. If I were to lose my job and my health insurance, well… that wouldn’t be good.

I am really missing my mom right now. The love and support from everyone is really fantastic and I’m so very grateful! But still… I miss my mom. I miss her hugs. I miss her never-wavering support. She wasn’t always the best at being a mom… I don’t think my parents really wanted kids… but she was a good mom, after I became an adult and I didn’t need her for things like, you know, *survival*. She believed in me and was super supportive of me! She thought I was brilliant and funny and kind! And that’s what I thought of her too! I do try to be those things. It doesn’t *always* work. She’s still alive but living in a memory care center and she doesn’t know who I am, and isn’t really verbal anymore. Just a word here and there. Last summer she was in the hospital for a couple of days and I spent many hours there with her. She said “I like you” to me with a smile. I cried as I smiled back and told her that I liked her too, very much. So yeah, missing her right now.

Despite all these fears, I am determined to try my best to be courageous and face these obstacles head on. I am determined not to let this disease define me. I am determined to live my best life, for as long as I can, which should be a long time. I’m only 52. Lots of life left to live, places to visit, people to love, and memories to be made!

Thanks again to everyone reading this and thinking of me and praying for me and sending me encouraging messages. I treasure them all! 


Grief is an Interesting Creature

Grief is an interesting creature. It has fangs and claws, it screams and cries, and yet has soft fur and kind of purrs sometimes. 🦁

There is a strange solace in grief. Mostly I feel a little detached, and a lot fuzzy. Forgetfulness and an inability to concentrate and focus are ever present.

It’s been just over a month since my father died, unexpectedly. Since I found out my first love had passed away three weeks prior. Since I got the diagnosis: Breast Cancer.

These are all things that I am grieving, along with the many fears that come with illness: will I be able to keep my job? If so, will I lose significant income? Will I be hit with huge medical bills? Will they find more cancer when they do surgery? Will I have to do things that don’t feel ‘right’ to me? Will my marriage suffer? Will my friendships suffer? Can I still be more than just my disease? 😢

I am not conscious of grieving most of the time, but the symptoms are all there, even when I say “I’m fine”. I had some of these things before this, but I’ve also been grieving my mom’s long, long, long goodbye for well over 10 years, and grieving my sister’s death last year. Here is a list (from griefwatch.com) of some of the physical, emotional, social, and behavioral symptoms I can truly say I’m experiencing right now. I deleted the ones that didn’t apply to me. There are still a lot of words here…

*Physical*
Feelings of unreality; Physical distress such as chest pains, abdominal pains, headaches, nausea; Change in appetite; Fatigue; Restlessness; Crying and sighing; Feelings of emptiness; Tightness in the throat

*Emotional*
Numbness; Sadness; Anger; Fear; Relief; Irritability; Guilt; Loneliness; Longing; Anxiety; Meaninglessness; Apathy; Vulnerability; Abandonment

*Social*
Overly sensitive; Dependent; Withdrawn; Lack of initiative; Lack of interest

*Behavioral*
Forgetfulness; Slowed thinking; Wandering aimlessly; Trying not to talk about loss in order to help others feel comfortable around them; Needing to retell the story of the loved one’s death / illness; Needing to retell the story of my diagnosis.

I’m in therapy (because I’m always in therapy!) and that’s helpful. It’s the only place I’ve truly mourned my dad, cried my eyes out and yelled about the unfairness of it all. The finality of knowing I will never get what I wanted from him. The child inside of me is wailing about feeling unwanted and unloved, never feeling good enough, never feeling like my dad and I knew each other. Knowing those things will never be fixed now. Even when I knew it intellectually before he died, the child in me hoped. That hope died with him. That’s really hard.💔

Therapy is also proving helpful for John and I to communicate better. He’s also joined a club he never wanted to join: Breast Cancer Husband/Partner/S.O. He’s joining me in some of my therapy sessions to help us communicate better. To help validate both of our feelings and identify where the rocks are that we keep stubbing our toes on. *Ouch!* is a common emotional feeling for both of us, because everything is just simmering below the surface and it doesn’t take much to erupt into an argument. Feeling selfish, feeling like the other is being selfish, feeling abandoned, feeling helpless. None of it is fun.

All of it is life. 👩‍❤️‍👨

Just keep swimming… 🐠