If You're Having a Mastectomy...

If you're going to have a mastectomy, there are some things you can do to prepare.

I'm not talking about mental and emotional preparation; that's all very personal.  There's only so much you can do to prepare yourself (and your spouse and children, if you have them) to lose a body part or two.

I'm talking about practical preparation, which can help you feel better - at least you'll be doing something while you wait for your breast amputation to happen.

While everyone's experience differs, these are some of the items that I found the most helpful for my surgery and recovery:

One of things I couldn't have lived without for the first couple of weeks was my mastectomy pillow.  I found a pattern online, Gisèle picked out the fabric, and my mom sewed it for me.  It's fluffy and soft, with flannel on both sides.  After surgery I used it to protect my chest from my arms or anything else that wanted to rest on it, and also used it as a seatbelt protector.

My lovely mom, showing the shape of the pillow, with cutouts for the arms.

Here's the other side of the pillow, doing its job protecting my chest from a cuddly kitty.

Button-up pajamas.  I wore nothing but these for the first week.  My favorites are the super-soft knit shorts and short-sleeved shirt sets from Gilligan & O'Malley at Target, like the ones below.  I preferred shorts and short-sleeves because they were the easiest to get on and off, and I could always cover up if I got cold.

Button-up shirts and soft joggers/yoga pants.  When you do want to get dressed, you're still not going to be able to pull anything on over your head, so you'll need button-up shirts.  Buy a size or two larger than you'd normally wear.  Even though you'll be missing breasts, you'll have drains to contend with, and the extra room will be more comfortable.  I found soft, comfy shirts at Target and Old Navy, and pants at Old Navy and Kohl's.  I also wore soft zip-up hoodies as shirts when I didn't want to do up all the buttons.  Old Navy was a favorite for those, too.

Drain pouches.  I wore one 24/7 until the drains were all out.  I actually had 2, handed down from a friend & fellow survivor. One was solid black material, and the other was mesh and had longer strings.  The mesh one was meant to be used as a shower drain bag, but I ended up using it all the time.  It zipped shut, so I could keep the drain tubes corralled, and the strings were long enough that I could wrap them around and tie them in front.  Since I was spending so much time sitting or laying down, it was nice not to have a knot in the middle of my back.  I used a lanyard to pin the drain pouch(es) to when I showered so I could keep the drain pouch dry.  The pouch I used looked similar to this:



A wedge pillow.  This was recommended by ladies on the YSC (Young Survival Coalition) Facebook page, and came in handy when I transitioned from sleeping in the recliner to sleeping in the bed.  I wasn't able to lay completely on my back, so I spent about a week laying on the wedge pillow, instead.  I bought mine from Amazon:

I would also recommend a good neck pillow.  If you spend time sleeping in a recliner, like I did, this comes in handy.  The one I bought stayed nice and cool, which helped with my hot flashes.

Silicone scar strips.  These were recommended by my physical therapist to help better the appearance of my scars.  I ordered long ones (7in) from Amazon, and each strip is just long enough for one of my scars.

I'm sure there are other things, but... chemo brain.

I had my radiation simulation today, but that is for another post.
 

Gisèle, Age 11

To see Gisèle at age 10, click here

1. What is your favorite color? "Purple.  Lavender purple."

2. What is your favorite toy? "I don't know.  I don't really... what do you mean by toy?  Like, actual toy?  I like books and drawing."

3. What is your favorite fruit?  "I enjoy mango and raspberries."

      

4. What is your favorite tv show?  "K.C. Undercover.  And I also like Bizaardvark." 

5. What is your favorite thing to eat for lunch?  "I like leftover casserole."

     

6. What is your favorite outfit?  "Ooh... I don't know.  I like all my outfits!  I like my new Harry Potter one {shirt}that I got the best."

7. What is your favorite game?  "I like Cover Your Assets."

8. What is your favorite snack?  "I like apples and cheddar."

9. What is your favorite animal?  "Baby elephant."

   

10. What is your favorite song?  "I'm not sure if it's Overcomer {Mandisa} anymore.  I think it might be Popular from Wicked.  I like singing along to any song from Wicked."

    

11. What is your favorite book? "Harry Potter and the Goblet of Fire."

12. Who is your best friend?  "It's weird 'cause I just started school and I don't see Hannah that much.  I'd probably still say Hannah.  And Andrianna, Sabrina, and Melanie."

13. What is your favorite breakfast? "I really like waffles still.  And bacon.  Waffles and bacon." 

14. What is your favorite thing to do outside?  "I like playing disc golf.  I also like playing roof ball with Miles."

15. What is your favorite drink?  "I like the blackberry lemonade from Mod {Pizza}."

   

16. What is your favorite holiday?  "Christmas."

17. What do you like to take to bed with you at night?  "A book."

  

18. What is your favorite thing to eat for dessert?  "Ooh - that's a hard one right there.  I'll take any dessert."

19. What is your favorite dinner?  "I like carnitas, and tacos, and anything Mexican."

  

20. What do you want to be when you grow up?  "Actress!"

Happy 11th birthday, Gisèle!  I'm so blessed to be your mom, and can't wait to see what this year has in store for you!  

Physical Therapy Has Begun

It's been 3 1/2 weeks since my double mastectomy, and I still have a drain in.  I hate it.  It's more and more painful every day, it's limiting my recovery since I can't do the stretches I need to on that side, keeping me stuck in button-up or zip-up shirts, and I won't be able to start radiation until it's out.  I've been in surprisingly good spirits throughout this whole cancer mess, but this drain has me weepy, depressed, and angry.

Despite the stupid, hated drain, I've started my physical therapy appointments.  Usually those don't begin until after all drains are out, but my range of motion was limited enough that my surgeon wanted me to go ahead and start now.  I'm supposed to begin radiation at the end of the month, and without some intense physical therapy, I won't be able to get into the position needed.

I saw my physical therapist for the first time last week (other than the initial measuring appointment pre-surgery), and she said I have significant cording on the right (where all my lymph nodes were removed), and am very tight on the left, where scar tissue has formed.  I have 3 PT appointments this week, 3 next week, and 2 for each of the 4 weeks after that.  They'll continue during radiation.

My first PT appointment was torture - and the therapist used that word before I could.  I don't think I was capable of speech at that point.  I was crying.  My sister, who was watching, was crying.  The therapist was teary-eyed.  My therapist advised me to take a prescription painkiller before all of my future appointments.

Part of PT is massage.  Not the relaxing Swedish massage you willingly pay for, but massage to break up scar tissue and stop my chest wall from fusing to the muscle underneath.  I do an at-home version every morning and night, and Jamie has been helping me with that when he's home.  My morning and evening routines now include emptying the drain; chest wall massage; removal, washing, and reapplication of silicone scar strips; exercises/stretches; and lotioning to keep my skin healthy.  It takes a good 20 minutes or so each time.  And my therapist added 2 new exercises today, so let's just up that to an even 30.

I like my therapist, I really do.  I told her today that I appreciate what she's doing even though I really don't like her while she's doing it.  I know all of this will help.  And I can do it.

Recovery

I'm recovering.

The day of surgery is a bit of a blur now.  We checked in early in the morning, and I changed into a gown and waited to meet the various doctors and nurses who would be involved in the surgery.  Whitney, my PA, had to draw on me; we joked about her drawing some cute doodles, but it turns out they get in trouble if they do that.  Too bad, because it would lighten the mood a bit.  My IV hurt, but I don't remember anything after they started to wheel me back toward the surgery room.  I remember saying goodbye to Jamie, but that's the last thing until I woke up in recovery.  Recovery is a blur, as well.  They kept asking me if I felt any pain, which I thought was ridiculous, so I think I answered, "It hurts" every time.  I don't remember the ride to my room, either, though I remember when we entered, because it looked a lot like the rooms I gave birth in.  (Same hospital.)

I spent just over 24 hours in the hospital, including pre-op prep time.  After surgery they kept compression wraps on my legs and I had nurses coming in to check my vitals and drains often.  Jamie got a decent night's sleep, but I didn't.

Recovery at home has been difficult, though made a lot easier by my Mom, who has been here for a week and a half so far, with another few days to go.  She has done all of the cooking and cleaning, chauffeuring the kids, reaching anything I can't reach, helping me with the drains, getting dressed, adjusting pillows, anything needed.  Jamie and the kids have been fantastic, also.  I'm not able to lift my arms above my shoulders, and they make sure I don't need to.  Jamie has helped me shower and get dressed, has emptied my drains... not what he expected, I'm sure, when we promised, "For better or for worse, in sickness and in health."  Cancer is a true test of love.

I've had less of an adjustment looking at my Bride of Frankenstein chest than I thought I would.  I have a long horizontal scar on either side of my chest, nearly meeting in the middle and wrapping partly around my sides under my arms.  The incisions/scars are covered with dermabond still, and are pinched and shiny and will be so for quite a while.  I still have some swelling in my chest and under my arms.  My entire chest and upper arms are sore/tingly/painful/numb/tight all at once, and it's extremely uncomfortable . I've been using tramadol for pain control and am down to 1-2 per day.  Dr. Miggins says the numbness will stay the rest of my life, but I'm hoping the other (painful) sensations subside.  My range of motion is still limited, though I've done my exercises religiously, so she's going to send me to physical therapy early.  (She usually waits until all drains are out.  My first 2 drains came out at day 5, but my 3rd one is still in.)  I have cording/scar tissue in my chest and under my arms, and without physical therapy I may not be ready for radiation on time.

We got the pathology back.  I had a great response to chemotherapy with regards to the cancer in my breast, with less than 5% of the tumor remaining in any of the cells.  There was some residual DCIS (ductal carcinoma in situ), also, but chemo generally doesn't work on that, anyway.  12 lymph nodes were removed, and 5 had cancer present.  The size of the largest was 9mm, and there was also an "extranodal extension" (reaching out of the cancer) of less than 1mm.  (So it didn't get very far out of the lymph nodes.)  So the lymph nodes didn't respond as well to the chemo, but ER/PR positive cancer like mine doesn't respond as well to chemo in the first place, anyway, so that's not surprising.  The plan was always radiation for me based on my initial diagnosis, so the surgical pathology doesn't change anything.

So - next steps:

I should be notified about physical therapy soon.  I'll be going 2-4 times a week until they don't think I need it anymore.  That will help me get my range of motion back, and it's important to get my full range of motion back before starting radiation.  After radiation it's much harder to regain anything further.

I have 1 drain still in place - the one under my arm, where the lymph nodes were.  (The 2 from my chest cavity have been removed.)  When it starts draining less than 30ml a day for 2 consecutive days, I'll go in to have it removed by Dr. Miggins's nurse, April.  My physical therapy will ramp up in intensity after that.  After that drain removal appointment, I won't go back to see my Surgeon until my follow-up appointment in 4 months.

I see my MedOnc (her replacement, actually) next week on Thursday.  We'll go over the pathology and discuss next steps.  Dr. Miggins thinks it's highly unlikely I'll need any further chemotherapy, so we should be talking about hormone therapy.  That would most likely start after radiation and either be a daily pill for 10 years, or a daily pill and monthly injection for 10 years.  Both options help to prevent recurrence and are available to me since my cancer is hormone positive.

I see Dr. Arzu, my Radiation Oncologist, on August 14th.  We'll discuss radiation and set up the placement appointment.  Radiation will start when school starts, at the end of August/beginning of September, as long as I'm able to physically get into the position needed by then.  Radiation will be every weekday for 6 weeks.

So for now I'll continue to empty my drain twice a day, do my exercises, and try to stop losing weight.