First 10 days post-op

I’m finally out of my “benadryl coma.” Oh gosh, that was not fun! I could barely function. Now that my rash is under control with a daily claritin, I am starting to feel like myself again, or at least like someone who just went through a double mastectomy! I’m still slow, still need naps, but my humor and energy is coming back! So before too much time lapse, I wanted to journal about my first week in recovery! It’s something every patient is curious about, but it’s hard to find anything online to describe the recovery. Doctor’s say you will be “fine” and will be able to take care of “basic needs” but what does that really mean? Yes, I could do take care of basic needs, but no way could I have done it alone! So here’s an account of my recovery.

Important - very important things to note. Remember, everyone’s cancer journey is their own, therefore your recovery will be different. Here is what happened to me:

Skin sparring bilateral mastectomy, with 4 lymph nodes removed on right side and one lymph node removed on the left side. (I feel like number of lymph nodes has a huge impact on your recovery and arm mobility). Skin sparring means the doctors only saved my skin, all breast tissue, nipples, areola, etc were removed. I was on the operating table for 4 hours.

So with that, here’s what I remember from my recovery:

First 24 hours, I needed help - 0 independence!

• First four things I noticed when I woke up:

  • whoa, I can look down and see my toes!

  • My chest feels so light

  • ah, I can’t adjust my blanket (I couldn’t move my arms and wanted the blanket to cover my shoulders, I was stuck…)

  • holy moly, my hemorrhoids were inflamed!

    • I had such a fun conversation with my nurse, Sarah, about my hemorrhoids. I’m not sure how many times we had the conversation, but I do remember our last one! She even got out paper and pencil and took notes! I remember her asking me if I wanted a wet rag for them, and I was like “god no!” but do you have a dry heating pad and sure enough, she found me one and wrapped it in a pillow case and shoved it underneath me! They felt much better.

• My mouth was incredibly dry due to the patch they put behind my ear to help reduce nausea and vomiting because I literally can’t throw up. My mom and antonio were constantly feeding me ice chips and water.

• Getting dress to leave the hospital was a comical disaster. I finally asked my nurse, Maria, if I could just wear the hospital gown home and not put my clothes on. Thank goodness she said yes!! I even brought a new mastectomy pajama top to the hospital, no thank you. My arms were not able to bend to get them into any type of shirt. So I went home in my hospital gown!

  Going to the bathroom.

• I finally went pee for the first time at 10:30pm (the night of surgery) with the help of the bathroom faucet flowing in the background. It was a slow dribble but it finally came! And then it came every hour after that. My mom and Antonio were on a newborn schedule, waking up hourly to help me go to the bathroom.

  • Yes, I could go to the bathroom (pee) on my own, but I could not pull down my pants or pull them up! Nor get out of bed. I could wipe, but barely.

• By day 2, I could get my elastic pants on and off!

• I could not wash my hands. At first I had to have someone wash my hands. By day 3, I was able to lean into faucet and rinse one hand at a time, but needed someone to dry my hands.

• Day 4 or 5, my hands started to come together, so I could wash them myself, but needed help turning the water on and off.

• Day 9, able to wash my hands all by myself!

• Wiping (essential to know if you are preparing for this surgery, TMI if you are just along for the ride!). They told me I would be able to wipe my own ass - false. What they should say, by the time your body is able to have a bowel movement, you should have enough mobility to wipe, but not guarantee. thank goodness, I did not need assistance in this arena. I did use wet wipes though to help clean that area and bc wet wipes are more gentle on my hemorrhoids.

  Pilates.

• I don’t think recovery from this mastectomy would have been possible without the skills and strength I gained from Pilates. Thank you pilates!! I was able to sit on the toilet and use my legs and gluts only to stand me up off the toilet (June’s theme was wall sits!). I also utilized the bridge position (minus my arms) to scoot onto my bed. I use the tweezer all the time, especially at the beginning when trying to sit up in bed. It has also helped me with my balance when getting dress. Pilates taught me how to be mindful of what muscles I’m using and when, so when needed, I was able to focus in on a muscle group to engage them to help me do whatever it was I needed - mostly getting out of bed, since I’m not able to use my arms.

  Getting in and out of bed.

  • Getting into bed was always much easier than getting out of bed. Still is true today.

  • For the first three days, I needed help getting out of bed. Best help came when people put their hands behind my shoulder and lifted me up that way. You’ll learn very quickly, helping from the armpits or arms is a big no no!

  • Day 4, I tried to be independent and not wake anybody up to go to the bathroom. Mission failed. I wobbled out of bed, knocked my pillow off the bed, which knocked my hight table over - water, juice, pills, all, went crashing down to the ground. Nevertheless, Antonio was carpet cleaning our carpet at 2:30 in the morning and my mom was helping me get back into bed. Let’s just say, trying to not wake one person up, ended up waking up the whole household for an hour. My bad!

  • About day 6, I could figure out how to wobble out of bed without moving my pillows and not waking people up. I’m day 10 today, and was able to wobble out of bed all by myself this morning! I could get out of bed much easier, if I didn’t have such a big heavy pillow by my side for arm support and drain protection. Half this game is strategizing and the other half is comfort. Choose your own battle!

  Period. Some of you might wonder, “hmm, what is it like to get your period after a double mastectomy?” Well guess what, I had that honor! My surgery was on Wednesday, my period came Friday. It was actually the best timing to get a period! Your belly is already incredibly bloated from the surgery, so I didn’t notice any bloat. and I was on so much pain killers and muscle relaxers, I didn’t even experience one cramp! It was amazing!!!

  Arm Mobility.

  • Major mobility difference between right and left arm

    • The first 48 hours, my arms, reach, lift, etc was useless. I couldn’t even lift a blanket on top of me. I couldn’t push the button on the remote control.

    • And then slowly but surely range and mobility come back. I’m 11 days post op and major difference in what my left arm can do versus right arm.

    • Day 9, I was able to brush my teeth all by myself! And I put my shorts on - it was a slow process, but I did it!

    • This morning I tried to close the garage door, I thought I would be able to do it with my left arm, but I was not able to reach.

    • I was able to open my medicine bottles - with my right arm!

    • My right arm definitely cannot carry or hold much weight, my left arm can hold more weight with the help of holding things against my body (this is day 11).

      Texting on phone. This was hard to do. At the beginning, I could not hold my phone. I could text on a tall table, with my phone laying on the table, but I couldn’t do much. Around Day 5 (same time I could start washing my hands) I could hold my phone with both hands. Made it easier to read on phone, but still couldn’t engage in super long texts/conversations. Day 9 - I noticed myself engaging in conversations!!! This also had a lot to do with the medicine I was no longer taking and where my mind was. I think my ability to hold conversations on text messages would have come sooner, if I wasn’t on pain killers or benadryl.

  Clothes. Overrated! It is harder to get dress than I thought. My sister found some adaptive clothing where it snaps on all sides and at the sleeves. I put that tank top on when Javi and I walk to the mailbox but that is about it. Antonio then got me an adaptive shirt to wear for Meet the Teacher and first day of school. Other than that, I’m just showing off my new chest and drains with a compression bra!

• I’ll also note, wearing clothes made my rash more itchy, so maybe if I didn’t get a rash, I would have been more keen on wearing a top.

  Drains.

• To be honest, I do not like them, at all. I’m so grateful I only had to get 2 and not 4!! I guess I’m a queasy person. Looking at my drains make me queasy. Getting them cleaned is the worst part of the day. It doesn’t hurt (unless if the person cleaning your drains forgets the drains are attached to you!), but man, the sensation my body feels when getting them clean is too much for me!

• If you are preparing for a mastectomy, you can buy things to have on hand just in case, but almost everything was given to me! My surgeon gave me a drain pouch for the showers and the hospital provided me with a drain belt to wear around my waist. That is all I needed. My sister bought me pajamas with drain pouches in them, I thought I would wear them, but it was too hard at the beginning to get dress, so I got used to not wearing anything. So we’ve returned all my clothes with drain pockets.

• Goal for drain removal - less than 30 mL / day. On day 9, I drained 36 mL…getting so close!!!

• Funny story, after my horrible night of getting my first poop pushed out, about an hour after that, I drained 75 mL in about 45 minutes!!! If you drain 100 mL in one hour, you have to go into the doctor asap. Thank goodness they quit draining just in the nick of time.

• Fingers crossed I get these suckers out at my next appointment on 8/13.

  Showering. I have no idea what the doctors were smoking when they said I would be able to take a shower by myself! I mean, I could wash my sideburns without assistance, but that is about it. I’m day 11 and still can’t wash my hair. Before surgery, we switched our shower faucet, so we have a removable handle. Amazing decision as that is what my mom uses to wash my hair as a I sit on a bench. I can kind of wash my body, but to be honest, I hate the shower and I get queasy every time I get in. So the best thing for me to do, is close my eyes, let me mom rinse my body, and then I get it out. When the water hits my body, it feels so different! I don’t have feeling in my skin on my chest, but yet, I can feel everything underneath the skin. When the water hits my back, it’s as if it makes my muscles twitch in the front. It’s so weird. I used to love mindfulness showers, but now, being aware of how the water hits your body and the sensations it sends, no thank you!

• It’s my plastic surgeon’s protocol that I shower every day - oh my lanta! (yes, I’ve been watching Fuller House during my recovery). If it were my choice, I would shower once a week! I don’t even shower every day when I’m feeling good!

  Important Gadgets!

  • Extra long straws - essential. Can’t move cups that are filled, so I could have my cups on a table, and just move the extra long straw to my mouth.

  • Back scratcher. You don’t realize how many hairs fly in your face and annoy you until you can’t move them out of the way. Back scratcher was also an essential itcher when I had my rash. The one I had, happened to be metal (maybe), but it was cold. So it also felt good on the rash.

  • Skinny ice packs. essential for rash relief, not so much for the surgery. The ice packs helped soothed my rash. I have to place them in my arm pits when I walk to the mail box, to keep my rash from getting irritated with the Texas heat.

  • The mastectomy pillow has been useful in the car. At first it was too heavy for me to carry and maneuver, but now I can carry it on my own. I don’t like the under the arm pit pillows, but I don’t like the trifold and able to position it in weird angles to help with comfort.

  • Lots of pillows of different shapes and sizes. You are just flat out uncomfortable. I also use pillow barriers as a way to protect my drains when Javi lays by me.

Enough for now! I’ve been slowly writing this one over the last three days - ready to move onto another topic!