A little bit of everything

*side note - I wrote this entry on Friday, 8/16. Forgot to post it! So I’ve made notes with new information since then, for today, Tuesday, 8/20. And I am now officially 3 weeks Post Op.

Here’s a bulleted list of randomized thoughts or events I have had this week:

Pooh Belly

• Once I got cleared to start moving my arms, I was determined to put on a big baggy t-shirt! I miss wearing my t-shirts. I needed help putting my shirt on Wednesday, now I can do it all by myself!! It takes a long time, but I can do it. Ahhh, feels so good!

  • now it’s 8/20 and I am getting faster with putting on my shirts, I’m still slow, but not sloth slow like from Zootopia.

• I’m not going to lie, I kind of like the way my chest looks flat! I don’t miss my boobs, but I do grieve my breast and how it happened.

• With that being said, I also feel like I look like I’m 9 months pregnant! The only time I’ve been able to see my belly past my boobs was when I was 6-9 months pregnant. So now when I look down, my automatic thought is “I’m pregnant!” I have to keep reminding myself I’m not. That was an unexpected funny thought.

  • Since then, I’ve learned that is a normal thought to have post mastectomy. In the Flattie community (people who choose to be flat), they call it their “pooh belly” or “buddha belly.”

  • Each day, my belly gets softer and softer. Today (8/20) was the first day it jiggled again when I laughed. (my digestive track is still slow to reboot, so I still need the help of collace and senakot to go to the bathroom).

Drains And Sleep

• I got my left drain removed on Friday!!! I feel so free! Last night I slept on my “left side” meaning I wedged myself between 5 different pillows so my body was up at an angle towards my left side and it felt amazing!!! Thank goodness I’m a deep sleeper and have been able to sleep on my back, but I sure do miss sleeping on my side.

  • 8/20 - I got my right drain out yesterday (Monday!) It feels so amazing!!!! and it felt amazing to go to bed last night without having to worry about draining my drains before and then carefully wedging myself into bed!

  • With drain removals I am now clear to go in public! and drive! I don’t know if drain removal was correlated with driving, or just the number of weeks post ops.

    • I drove home today (8/20) after dropping Javi off at school with Antonio in the car. I definitely have to adjust how I drive and hold the steering wheel, but I was able to do it. That will be my daily exercising - picking Javi up from school each day. I don’t feel comfortable yet driving much further than that.

• Antonio and I happen to have bought a brand new bed in May, right before I knew I had to go in for biopsies. We decided to throw in the bed frame that goes up and down, because why not?! We had to buy a frame anyway. Best decision ever without knowing how incremental a moving bed was going to be that following weekend! I’ve been able to adjust the angle as I sleep through the night. It’s been amazing!! Javi loves being in our bed in “taco mode” head and feet all the way up! Our only regret (not really because it was double the cost), was not upgrading to where each side could either be up or down so then Antonio could lay flat and I could be at my weird angles. Antonio misses our bed, but Javi is enjoying his new bunkmate!

• I learned cleaning drains is just like putting new strings on a guitar, thank you Antonio!

  • Antonio has found his comfort level with my drains and is starting to take over drain duty - right when it was time to get them out. Well played, mi amor.

  • I have a weird aversion to my drains and when they get cleaned, it gives me such a weird sensation in the chest area. I don’t like it one bit. Thank goodness I no longer get queasy with it, but not something I look forward to doing. I could do drain maintenance if I didn’t have a village, but I prefer not to if I have the choice. So thank you to everyone who has helped with my drains!

Blisters

• Oh yeah, so this also happened to me, all while trying to learn how to “scrub better” and find the strength to wash myself. These huge ass blisters decided to pop up out of no where - 3 on the right side and 1 on the left. The first time I saw them, I gave up. I told my mom, “I can’t was myself today, you need to do it.”

  • What’s mind boggling - I have these huge blisters (think omega 3 gel caps) that you CANNOT feel! I looked down at my chest and first thing that goes through my mind “that should be painful” “where’s the pain?” I can’t feel them! And then as my mom goes in to clean, I’m holding my breath waiting for the excruciating pain you get when you tap a blister, and I get nothing!

  • My doctor is monitoring my blisters closely. Which means we have appointments every 48 hours. They want to make sure they do not get infected. I’m at a high risk of infection with my expanders in, so they are extremely cautious. They also had me start a new antibiotic right away to prevent infection. If I were to get an infection, it would typically mean surgery to remove expanders so they are doing everything they can to prevent that from happening! They also layered up the “tape” on my right drain to make sure no infection could crawl its way in. It was annoying at first, but I’ve gotten use to the extra level of “tape” on my side. We can’t move onto the next step until my blisters are gone.

    • 8/20 - at my appointment yesterday, they reported my blisters are behaving and going away! I don’t have to come in and see them until my next appointment on 8/29! WOOHOOO!!!

  • Funny story: we are giving my mom a break from care duty. On Monday (pre-blisters), Antonio said he could care for me! After I got my blisters Tuesday evening, Antonio is like “No thank you, I signed up for drain duty not blister duty!” So Jennifer came over on Saturday and Sunday to manage my blisters! Thank you.

  Showers and Touch

• I’m getting better with my showers! Its amazing how just accepting your new reality, and for me it was through journaling, made my shower so much easier. I had some tears, but it wasn’t like I opened the floodgates. I think the floodgates came out in my journaling!

• Make note, I also went through this whole process while also caring for my blisters.

• So many people ask, what does it feel like, so here’s what I have come up with so far:

  • side note: Since I’m doing reconstruction, they left all my skin intact and I was well-endowed, therefore, I have a lot of flappy skin that is just hanging out until my next surgery. My cancer surgeon called it my “elephant ears” or you can think of it like a deflated balloon.

  • So what it feels like to touch: raw chicken. BLAH! I hate touching raw meat and that is what my “noobs” feel like, raw meet. But I made myself touch them and get used to it. Thank goodness it is temporary! And then higher up in my chest, it is hard. At my appointment, I asked Whitney to walk me through everything that I was touching and why it felt the way it did to help me through this process. Of course I was crying when I asked her that request, but she did so gingerly. She pulled out their expander model and told me how mine was sitting inside and what part of the expander I was feeling where. I hate having things in my body so this really helped knowing what it was.

  • Under my armpits is a total new experience as well! I also cannot lift my arms up all the way, so maybe this is how my armpits felt before, but not sure, because I only cleaned them when my arms were up, not down. But really, not sure. Anyways, when I student taught 5th grade, we did a science experiment to learn how blubber works in warm blooded animals. So I filled zip locks bags up with lard as a step in this science experiment. My arm pits feel like that bag of lard, with chicken tenders immersed in it. And then you keep that bag of lard underneath your armpits and pick up all the tiny toys on your child’s floor, through them into that bag, and that is how it feels when your arms are down. Sometimes you notice squishiness, sometimes you notice something dull budging at you, other times you notice something sharp and pokey. But a constant feeling is always there, and something in the way of closing your arms completely. It’s like you when you put a jacket on with a long sleeve shirt and it bunches up at the arm pit hole - that’s how it feel all the time.

  • And then on my right arm, where I got more lymph nodes removed, there is like a direct line of “pain” that extends half way down my upper arm and then does stops at the half way mark. Its uncomfortable when I extend my arm too far.

The Pain

• Here are some descriptions on trying to describe the pain I am noticing right now.

• Disclaimer, the pain is doable. I’ve quit taking pain killers and muscle relaxers. I’m taking Tylenol as needed.

• Sun burn feeling you get when your bra strap is rubbing up against your sunburn. I have that feeling across my chest.

• Or it feels like road rash, turf burn, skid knee, going across your chest.

• In the arm pit area, it feels like I have done a lot of push ups, but the pain does not go down into the lats or the core, so it’s like I’ve been doing lazy push ups because I only feel it in the front arm fold areas.

• At times, mainly if I’m laying or sitting at the wrong angle, I’ll get this deep dull pain in my back around my shoulder blade and it feels like someone pierced a pole through my back and trying to go through my chest. Best way to get rid of that pain, is finding a new position - thank goodness we are pillow hoarders at our house!

• When you purposely take deep breaths, it feels so good in your lungs!

• My mom hugged me good bye yesterday as I was sitting on the couch, forgetting that I had chest surgery, wrapped her arms around me as I yelled “ow!” So evidently, I’m not ready for squeeze hugs!

• Absence of pain! I noticed my neck pain is gone!!!!! Before surgery, I was having so much pain in my right neck, jaw bone area. Since surgery, I have not noticed any neck pain!!! The pain was from holding up my boulders all the time.

  • I also notice a lightness in my chest. It’s much easier to sit up straight and to put my shoulders back. It feels good to have my shoulders back.

Javi

• Javi has been amazing! He loves to tell people how to care for me.

• He loves moving my pillows to help me get out of bed.

• He’s been so gentle with me.

• He absolutely hates that he has to take a shower after school before he can snuggle with me. There are many days when he chooses not to shower - how rude! I guess he takes after me!

  • 8/20 - no more drains so now he gets to snuggle on my mommy again! I loved my mommy javi snuggle last night on the couch!

• When I first got out of surgery, I was unable to play video games. We tried the first weekend and it was too hard. Now I’m able to play and it is one of my favorite things to do with Javi. We will sit side by side conquering levels together on my NES! Nothing better than playing my childhood favorite games with my child!

Millie

• Millie is our oversized pyrenees lab mix! She is five years old, a month older than Javi! You’ll have to ask Antonio about her adoption story!

• We were apprehensive about whether or not we should have Millie stay with other family members since I’ll have drains and when she’s excited its real hard for her not to jump (she’s getting better, but still can by jumpy). We decided to keep her for a sense of normalcy and because Javi finds so much comfort in Millie. We did not want to take a member of his support team away.

• Best decision ever! Millie has been amazing through this process! It’s like she knew something was up for me and she has been so gentle. We weren’t going to have her sleep in my room (bc dogs can increase infection), but Millie opened the door anyway and insisted on sleeping by me on the floor. She barely left my side.

• My favorite thing she did was sit right by me while I was standing. Her head was at the perfect height, where I could rub her head with my finger tips. I loved those moments!

• Now that I’m up and moving more, she is back to being obnoxious and demanding more belly rubs from me. She is not satisfied with my foot belly rubs, but I’m not going to lay on the floor next to her until I get my right drain removed!

That’s it for now! Next post coming soon about choices.