Monday, August 13, 2018

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.



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Wednesday, August 1, 2018

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.
       


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Wednesday, July 18, 2018

My Surgery Is In 36 Hours

My mastectomy is in 36 hours.

A bilateral mastectomy with full (right side) axillary lymph node dissection.  And no reconstruction, at least for now.

I'm going to wake up on Friday after the 4-5 hour surgery with no breasts, no lymph nodes under my right arm, and long scars across my chest where my 32DDs used to be.

My body will never be the same.  Ever.  For the rest of my life, I will look and feel different.  Even if I have reconstruction in a year (after I heal from radiation), my body won't look like mine.  Every hug and cuddle from here on out will feel different.  I'm not going to fit in clothes like I used to.

I never considered myself a vain person until this whole cancer thing happened.  I realize now how very vain I am, because I cried when my eyelashes fell out.  I was proud of my eyelashes.  They were thick and long and curly, and I loved them.  Turns out I was vain about them.  And I'm going to miss my breasts.  They fed my children, looked good in and out of clothes, and I liked them.  And after Friday morning, I won't have them anymore.

I'm worried about what I'll see when I look down after surgery, or look in the mirror for the first time when the bandages come off.  I'll be bald (nearly) and breastless, covered with scars, and I'm afraid I won't feel feminine or attractive.

There's a song by Plumb that I've really loved lately, and I repeat the refrain when I need the reminder.  And I've needed the reminder a lot lately.  Here are the lyrics, and a link to the song:

Beautifully Broken by Plumb


Every tear, every doubt
Every time you've fallen down
When you're hurting, feeling shame
When you're numbing all your pain
When you've lost your way
And feel so far away

You're not


You're beautifully broken
And You can be whole again
Even a million scars
Doesn't change whose you are
You're worthy
Beautifully broken

Every fear of being loved
For who you are no matter what
When you're stumbling, with each step
And you're haunted by regret
And the darkness closes in
Just listen

You're beautifully broken
And You can be whole again
Even a million scars
Doesn't change whose you are
You're worthy
Beautifully broken
You're beautifully broken (beautifully broken)
You're beautifully broken

Oh, the God who made the stars
Is the God that made your heart
And He's holding you right now
He can heal the broken parts
And make beauty from the scars, the scars
Beautiful scars!

You're beautifully broken
And You can be whole again
Even a million scars
Doesn't change whose you are
You're worthy
You're beautifully broken
And You can be whole again
Even a million scars
Doesn't change whose you are
You're worthy
You're beautifully broken (You're beautifully broken)
Beautifully broken (You're beautifully broken)
You're beautifully broken


Surgery is in 36 hours.  And that surgery is going to remove the cancer from my body and get me another step closer to being done with all of this.

I can do this.




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