Saturday, October 13, 2018

Miles At Age 9




1. What is your favorite color?  "Could I do two?  Black and red."

2. What is your favorite toy?  "Nerf guns."    

3. What is your favorite fruit?  "Kiwi and mango."         

4. What is your favorite tv show?  "Teen Titans Go and Phineas and Ferb."     

5. What is your favorite thing to eat for lunch?  "Pizza and quesadillas."        

6. What is your favorite outfit?  "Exercise shoes, well actually, um... everything Champion {brand}." 

7. What is your favorite game?  "Baseball and Monopoly."     

8. What is your favorite snack?  "Ooh... {loooong pause}… Pringles."   

9. What is your favorite animal?  "Cheetah.  And rhino."

10. What is your favorite song?  "Down With the DC Talk {DC Talk} and The Original {Royal Tailor}."

11. What is your favorite book?  "That's hard.  My favorite book... probably Dragons Love Tacos."

12. Who is your best friend?  "Jack, Brycen, Lucas, Rahim, and Simeon.  And Logan and Ethan."

13. What is your favorite breakfast?  "Donuts, kolaches, pancakes, and French toast."
  
14. What is your favorite thing to do outside?  "Be in a batting cage and do swinging."

15. What is your favorite drink?  "Dr. Pepper."

16. What is your favorite holiday?  "Ooh... Christmas and Halloween and my birthday."

17. What do you like to take to bed with you at night?  "Nothing."

18. What is your favorite thing to eat for dessert?  "All cakes, ice creams, and pies."

19. What is your favorite dinner?  "Enchiladas, homemade pizza, quesadillas, and mac and cheese."

20. What do you want to be when you grow up?  "Pizza maker and maybe somebody that works at Main Event.  And geologist."

Miles, you are the sweetest, smartest, most energetic, most loving, most amazing boy I know.  I adore you.  Happy 9th birthday!!



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Friday, October 5, 2018

Nearing the End of Active Treatment!

Today was day 20/30 of radiation, so I'm 2/3 done!

My routine is the same every day.  It does vary slightly if I have PT beforehand or another appointment after, but the radiation part is the same every time.  I check in and go to the waiting area in the back, change into my beautiful silk kimono and lock my bag into a locker, and then wait, reading on my phone, until I'm called back into the radiation room.

The radiation team is super nice and someone always brings me a warm blanket and tucks it in around my feet while I get "comfy" on the table.



I lay on my back on this cradle (hard foam form), left arm down with my thumb tucked in my waistband, and right arm above my head and bent, head angled to the left and up so that my chin is out of the way of the beams.  My knees go over the blue wedge so I'm a little more comfortable.  My foam cradle is underneath the towel and was made just for me so that I'm in the exact same position every single time I'm there.  (You can see cradles for other patients on the shelves in the back.)  The team gets me in the initial position and leaves the room while the x-ray and radiation are done.

Here's a view of the machine that's used:


The table I'm on raises and lowers, turns and rotates, and the machine in the back can spin around while different parts come over the table.  I also wear special glasses the whole time that help with the breath holds I need to do.  Each time the beams are turned on, I take a deep breath in and hold it for 5-25 seconds (depending on whether it's an x-ray or radiation), keeping my lungs and heart as far as possible from the beams.  Looking through the glasses, I can see a bar that indicates my stomach as I breath, and one that is my goal for the deep breath.  As long as I match the two up when I hold my breath, I'm in the same position each time.  After each small area is radiated, the team re-enters the room, draws on me with sharpie to indicate the area that is finished, adjusts the table and machine, and leaves again.

When my 20-25 minute session is completely done, I head to the changing room, slather cream all over my pink skin, and put on a cheap t-shirt (since both the cream and the sharpie marks come off on the shirt).  Repeat the next day.

I found out today that my last 5 sessions - the week after next - will be "boost" sessions, which means next week is my last week of radiating the entire affected area.  The week after that will be shorter sessions just doing electron radiation along my scar line.

Each evening (on radiation days) I do a lotto scratch-off.  I promised the kids that any money won from the cards will go into our Europe trip savings jar, and so far I've won $62.  It's fun to see the pile of cards shrinking since I know that it means I have fewer and fewer sessions left.

My skin is holding up really well.  I'm pink - kinda sunburned - but my Radiation Oncologist, physical therapists, and radiation team have all remarked on how well I'm holding up.  Please pray that it continues through the last 2 weeks!

My hair is finally starting to thicken a bit, and I'm going to get it trimmed over my ears next week.  It still looks like post-chemo hair, but I'm starting to think that maybe it won't be like that forever.

After radiation #20


10 more radiation sessions to go, and then it's just the monthly Lupron shots and daily Exemestane pills for 5 years.  Active treatment is almost over!



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Monday, September 10, 2018

Day 1 of Radiation

Today was day 1 of radiation.  1/30 done now.  I had 2 appointments leading up to day 1, both of which included lots of positioning, x-rays, and sharpie marks.  Today was the first day of actual radiation, though.

I arrived and went back to the radiation waiting room, and changed into my robe.  They provide hospital gowns, but I wanted to bring something pretty to wear since I'll be spending the next 6 weeks there.  The silk robe my friend Jennifer sent me from Thailand fit the bill nicely.



The radiation team is fantastic.  They're all really friendly.  They had me get comfortable on my mold on the radiation table (the one we made last week) and started with some xrays, which will be standard procedure to make sure I'm lined up correctly each time before beginning.  The appointment took about 30 minutes, with the radiation done in 4-5 zones with breath holds, 20-25 seconds each, needed for each one.  They're using both photon and electron radiation on me, though I'm not sure what that means.  I didn't feel anything besides some positional discomfort during the session, but had a bit of a surprise at the end.  I was told that for the first two weeks of the six, they would be adding a bolus to the sessions (every other day).  The bolus acts like skin and brings the radiation closer to the surface, which apparently is where I need it.  Unfortunately that changed the team's tune from "some people hardly burn" to "you'll burn."

There's nothing I can do to prevent burning, but I do need to take care of my skin as best I can.  Radiation dries it out, so I'll be applying cream twice a day until I burn.  Miaderm is my cream of choice, though I used Aquaphor tonight in a pinch.  Miaderm has a lotion/cream consistency, while Aquaphor is more of an oily ointment; I definitely prefer the Miaderm.  When I start burning, I'll add in some pure Aloe gel and Calendula cream in the middle of the day.  Oronine cream was also recommended, so I may use that at night.  I'll be showering every morning so that I have nothing on my skin when I arrive for my daily radiation.  I have a bunch of mens undershirts to wear 24/7 for the next 6 weeks to keep all of my creams and Sharpie lines from transferring to other things.

Since I have 30 radiation appointments to look forward to (29 now!), I did something fun - I bought 30 scratch-off lottery tickets.  I'll have something to look forward to at the end of the day besides burnt skin and incredible fatigue.


1/30 done!


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Thursday, August 30, 2018

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.
 


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Tuesday, August 28, 2018

Gisèle, Age 11







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!  










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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Thursday, June 28, 2018

Chemo Worked

I had my post-chemo ultrasound on Thursday, and...

There was NO CANCER there to be measured.  They had a hard time finding the biopsy clips in my breast and lymph node.  The tumor bed (scar tissue, basically) could be seen, but nothing measurable.

That is an amazing response to chemo!

I grinned when the radiologist told me the news, and then started crying when I came back to the waiting room to let Jamie know the results.  Chemo was hard.  It'll take me some time still to recover from it, but it was worth it.

Jamie and I met with my PA and Surgeon this morning (love them!) to go over the results and discuss my upcoming surgery.

On July 20th, I'll have a bilateral mastectomy and complete (right side) axillary lymph node dissection.  This means that both my breasts will be removed - tissue and skin, but no underlying muscle - along with all the lymph nodes in my right arm.  Dr. Miggins will make me as flat as possible both for ease of radiation after, and so that I'll have an easier time living with being flat for the next year/year and a half until reconstruction can take place.

We discussed the possible complications from surgery, what aftercare will look like, and what my lymphedema risk is.  I ordered a lymphedema bracelet to wear (no blood pressure cuff, blood taken, or injections given in that arm for the rest of my life), but can hold off on ordering a sleeve unless I develop actual lymphedema in my arm.  Surgery will take 4-5 hours on that Friday, and I'll go back for a post-op appointment about a week and a half later.  We should have the surgical pathology results at the time.  I was also given referrals to a couple of reconstructive surgeons.  I'll set up appointments with them pre-surgery to see who I like and what their recommendations are for me for reconstruction post radiation, and then won't see them again until after radiation is complete.

Yes, radiation is still a go, even with the great response to chemo.  The reason is the same as that for continuing to take all of my (right arm) lymph nodes - to give me the best chance of a long, healthy life with no breast cancer recurrence.  I'm young and my oncology team wants to do everything they can for me.  I'm good with that.

On to phase 2!


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Wednesday, June 27, 2018

My Quilt

I've received a few different blankets while undergoing treatment for breast cancer, but the one I'm going to tell you about is one of the most special gifts I've ever received.

When my sister-in-law, Natalie, heard about my diagnosis, she put the call out to my siblings, parents, nieces & nephews, and grandparents, and collected quilt squares from everyone so that she could put this together.

I love it.




Here it is, from left to right, starting at the top:










You can tell they know me well - not only can you see music notes on there, but my favorite quotes, Harry Potter squares, and even a nod to Starbucks.  My family is amazing. 



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