Therapy

Yesterday was my occupational therapy (OT) evaluation appointment.  Even though I was a pre-Physical Therapy (PT) major for awhile as an undergrad, I have to say that I'm not exactly sure the difference between PTs and OTs.  And I had thought I was going to see a PT, but I am, in fact, seeing an OT.  And she is also wonderful.

One of my fears with all of the treatments I'm going through is lymphedema.  Every treatment (surgery, axillary lymph node removal, chemo, radiation) increases the likelihood of its occurrence, and since I get the full package, that's a lot of risk factors!  There's not a lot known about exactly what causes lymphedema or even fully how to prevent it, and there's no cure, so the best "treatment" is to catch it early and maintain it at an early level.  So I have some exercises to try to prevent it, and to treat another, related side-effect that I do have--cording.  I think the cording was responsible for much of the sensitivity I've been complaining about.  I got a great handout on preventing it, and how to best ease into movements after surgery from the therapist.  Sure wish they made it a part of the pre-surgical information they gave me! 

I have been babying my arms and movements so much the last three weeks that I was pleasantly surprised at how much I am now allowed to move--and how much I was actually able to move.  I think I might have overdone it a bit, though, as I'm pretty sore today!  Still, I was almost able to lie on my side in bed last night, although only for a little while.

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Other big events in the last two days include attending TWO knitting groups (the daytime one and the nighttime one that I'd been trying to start since last summer), being out of the house for a 6 1/2 hour stretch without flopping from exhaustion, doing a little house cleaning, and putting a camisole on over my head (as opposed to stepping into it)!  That and continued socializing and Buffy watching.  The back of the recovery cardigan is done, as are the pockets:

The kids have busy weekends (Congress, Forensics, birthday party, Girl Scouts, work...) and Greg's out of town tomorrow and we're having some friends over for the Super Bowl so I have to figure out what to make.  All good things keeping me busy--very good things!

Radiation Oncology

Today was my follow-up appointment with the general surgeon (Dr. Lal) and the first dedicated appointment with the radiation oncologist (Dr. Schulz).

Dr. Lal is also pleased with the way I'm healing and how even I appear, which apparently isn't common with the spacers (?).  She also took off the steristrip over the lymph node removal scar and said I could leave it uncovered.  Basically, she said I'll be seeing lots of other doctors in the next 6 months to a year and they'll be monitoring my "breasts" for lumps or other signs of recurrence, but after that time, she will be the one I see for follow-up and clinical breast exams.  I'm okay with that, because she's awesome.  :)

Then I met with Dr. Schulz and he went into somewhat greater detail about radiation.  The start date will be 3-6 weeks after my final Taxol infusion.  If all else goes according to schedule, that should be about June 24th.  I will still be having Herceptin via the port, but it does not interact with radiation like the A, C and T do, so I can have it alongside the radiation.  Radiation will be 5 days a week (M-F) for 5 1/2 weeks.  Unlike chemo, the side effects of radiation develop in a cumulative manner.  Supposedly the first few weeks aren't a big deal (and each appointment is only 15-20 minutes), but then the two most common side effects start to build.  Skin irritation (ranging from slight pink to peeling blisters) and fatigue are the likely side effects, both lasting for up to a month after radiation is done.

I asked Dr. Schulz why chemo is done before radiation, as I had an inkling but wanted to know for sure.  I know that chemo is sometimes done after surgery and sometimes before surgery (if a tumor is very large and/or seems to have reached into lymphatics and/or surrounding muscle, the goal is for chemo to shrink it first), but always seems to be before radiation.  He explained that research has shown (and even told me which research--the group, the n size, etc.) that likelihood of recurrence is lesser, and survival is greater, when chemo goes first.  The reason is the chemo is systemic, so if there are any escaped cancer cells in the body, you want to get them first before they can settle in and set up house in another location.  Radiation is localized, and since there was lymph node involvement and the tumor was near the chest wall, recurrence there is more likely, so you want to hit it with more than just chemo--thus the radiation.  But metastasis is worse than the local recurrence, so chemo first.

Expansion #1

I haven't blogged much the last few days because there hasn't been much to blog about.  Well, there's one kinda big thing regarding work, but it's still too up-in-the-air to elaborate on yet.  Hopefully I'll know more by next week.

Today was my first expansion appointment at the plastic surgeon.  I thought I'd get both sides expanded, but I guess my skin was/is rather tight on the right (tumor) side, so Dr. Sterkin had started the implants uneven when placing them during surgery and today just brought the right side up to the left side.  He also spent time explaining the timeline for reconstruction.  He said that we'll work to get me fully expanded during the time I'm having chemo so that I'll have that fully-expanded buffer before I start radiation.  Radiation can cause all sorts of skin and tissue issues (and can mess up implants), so he said that the final reconstruction won't happen until 6-9 months after radiation is done.  And I'm not sure exactly when radiation starts, as the appointment with the radiation oncologist isn't until tomorrow.  Either way, it's still a long road ahead!

The expansion itself was remarkably painless.  There's a valve-type thing in the expander and they just puncture it with a needle attached to a big syringe and top things off.  :)  Other than the needle poke, I felt nothing.  And I really don't feel much different size-wise, either.  Here's what the tissue expander looks like:

And here's where it sits, behind the chest muscle:

I heard the gradual process of expansion described as being like the way your abdomen stretches during pregnancy.  :)

The doctor did peel off all my surgical steri-strips (and then re-apply some), and that felt odd.  He's very happy with the way I'm healing and the way things look.  He also was surprised I hadn't started PT yet.  I'd been being super careful movement-wise so that I didn't hurt anything, and I definitely feel that my range-of-motion is limited, so I'm pretty happy that I'll get to work on that.  He gave me an exercise to start (walking fingers up the wall), and I came home and bumped my first PT appointment up to this week.  Here's hoping it helps and I can soon put shirts on over my head--I've been raiding Greg's closet since I own so few button-up shirts myself.

I'm glad I'm moving up the PT, too, as my CT scan and bone scan (and pre-chemo blood work) are scheduled for February 3rd and I need to be able to raise my arm over my head to do the CT scan.

Moving right along...

Hypersensitivity

I've been mentioning that the "big" pains have been gone for a long time, but it's the little things that are annoying me.  Over the last few days, the little thing that's been driving me nuts is the bizarre feeling that I get every time I get a chill.  Essentially, when a chill runs down your spine, it RUNS DOWN YOUR SPINE!  But mine have been stopping at my breast area, circling, and focusing on the areas where the drains were removed, and then settling in my right upper arm, where my lymph nodes were removed.  Not only is there this bizarre chill-type feeling, but it remains afterwards as a bruised feeling--so much that at times it hurts to be gently hugged, or even to rest my arm on a pillow.  I talked to a few people I know who went through similar surgery and tried to google to see if "chills following mastectomy" were a thing, but couldn't find anything--until yesterday morning when I stumbled on this blog:  CoolGirlsGetCancer and the post entitled "tips for dealing with hypersensitive skin after a mastectomy."

The way she describes hypersensitivity is exactly what I've been feeling, so I started following her tips--essentially desensitizing myself by forced touching and pressure.  And it seems to be working!  Today I even went to the mall and as I felt a chill coming and that horrible pins and needles creepy feeling, I forced myself to rub my right arm against my torso.  Though it was uncomfortable, the feeling soon passed.  I hope this is the beginning of the end.

The other yucky, uncomfortable thing I've been dealing with is night sweats.  I can't find anything online about anyone experiencing them following a mastectomy.  Lots of women get them after chemo (essentially because chemo plows them into chemically-induced menopause), but I haven't seen any after surgery alone.  I don't know what's causing it, but it's strange.  And I don't have hot flashes during the day--it's just the sweating at night.

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Several nice little things over the last few days have happened.  
*I got out for lunch (Thai food--which I've been craving since my appetite returned) with my wonderful friends and former-classmates Chelsea and Katie.  
*I chatted with a local woman (kids went to same schools--different ages) who not only has the same breast cancer team as me, but the same diagnosis!  (This made me so happy for some strange reason.  Because ILC is so much more rare than IDC or the in situ types, I had not yet met anyone else with lobular.  It's nice to know that, while it's rare, it's not THAT rare!)  
*I wore jeans for the first time post-surgery today.  
*I got a text this morning from my dear friend Mary asking if I'd be around since she was going to be in town this afternoon.  What a lovely afternoon catching up with her!

Two weeks

My survivor friend Dawn sent me a care package right before surgery and in it was a note that said "two weeks and then it's all uphill!"  Over the last two weeks, I've kept that in mind, realizing that I could not expect things to be easy for the first two weeks.  Today's the two week mark, so now I expect to wake up tomorrow morning 100% healed!   ;)

Honestly, though, I do feel so much better.  Nowhere near 100% yet--waiting till I can lift my arms over my head and sleep on my side, and drive a car.

Today I went to the daytime knitting group and between yesterday and today, got a nice start on my recovery cardigan.  I have been mainly knitting socks (sock weight yarn; size 1 needles) for the last 5 years.  This (bulky weight yarn and size 13 needles) has been so different and so fun!

I went for a walk in the sun along Silver Spring Drive, popping into some of the shops that I seldom visit.

I took my last (4x a day for 14 days) antibiotic.  So long, stinky sulfa drug!

I went to the Zilber Winter "Work Party" tonight (kinda snuck in there as I still got one paycheck in January and so was still on payroll when the invitation went out... tee hee!) and it was so nice to be back in the building/school that I love and to see so many people who have been a big part of my life the last 5+ years.  The last time I was at Zilber, I had not gone public with my diagnosis and it made my departure extra bittersweet.  This was a good trip back and it reminded me that I'm still part of ZSPH, even though I've graduated.  Besides that, it was nice to dress up and wear makeup for the first time in ages.

Medical Oncologist

I'm pretty sure that I have had more medical appointments since finding the lump (November 24th) than I had in my lifetime prior to November 24th, with the exceptions of my pregnancies.  Basically, I've been pretty healthy and not had to see a lot of doctors.  Most of my health has been managed by a Family Practice Doctor (and I love having one doctor for the whole family, as opposed to each seeing specialists).  Well, I now have a HUGE medical team, including:

Dr. Hall--my primary care (family practice) physician

Dr. Janik--OB/Gyn (though since genetic tests were negative, likely won't see her)

Dr. Lal--General surgeon (did mastectomy)

Dr. Sterkin--plastic surgeon (reconstruction)

Dr. Shah--medical oncologist (chemo, hormone therapy)

Dr. Schulz--radiation oncologist (radiation)

Ms. Stoddart--genetic counselor

Deb & Laura--nurse navigators

plus the radiologists and techs...

I can say, without exception, that every single member of my team has been fantastic!  If you find yourself with a breast cancer diagnosis and it's convenient to go to Columbia-St. Mary's (either downtown or Ozaukee Co.--most if not all of these doctors practice both places), consider this team.

So today was the first official appointment with Dr. Shah, though I had previously met with her.  Now she had the full surgical pathology and my plan of treatment.  

The last "step" before starting chemo, and since the cancer was in my lymph nodes, is to determine that it has not metastasized outside of the breast/lymph.  Therefore I will have a CT scan and bone scan as soon as I am healed enough to raise my arms above my head for the scan.  In addition to that, I need to have a MUGA heart scan, because some of the chemotherapies I will be on are known to damage the heart and they need a baseline.  So I will get those done, along with additional blood work and tests to determine if my ITP (low platelets) is actually ITP and not another cause of low platelets, and have an appointment to begin my first chemotherapy the morning of Wednesday, February 11th.  If any of the scans show metastasis, the whole plan of treatment will change, but I'm choosing to believe that I will start chemo that day.  My friend Katie and I were joking about actually wanting the doctor to give you the go-ahead to be able to start chemo, because who would WANT that?  But the alternative is that things are not good, and you're not healthy enough to start on a given day.  Therefore I'm hoping that I'm able to start February 11th.

My routine (referred to as "ACT") will include:

Adriamycin and Cytoxan every 2 weeks, 4 times (those will likely be Wednesday mornings, starting 2/11; I will then have to go in the following day for a Neulasta shot to boost my blood counts)

then

Taxol and Herceptin every 1 week, 12 times (also likely Wednesday mornings)

then

Herceptin alone every 3 weeks for an additional 12 or 13 times (to make up a full year)

Each chemo day will start with a blood test, to make sure my blood counts are high enough that I can tolerate the chemo.  I will then meet with Dr. Shah, and if all goes well, will then get the chemo.  The first rounds (i.e.: before doing Herceptin alone) I will be given IV anti-nausea meds before the chemo, then each chemo separately.  So essentially half a day every other Wednesday, then every Wednesday, then every third Wednesday for over a year.  The expectation is that I'll feel fine on Wednesdays and Thursdays, and then Friday will likely start feeling the side effects, but have the weekend to recover.

Side effects are, of course, individual, but they highlighted:

*hair loss, beginning on about week 3

*nausea/vomiting

*low blood counts, which may increase chance of infection, chance of bleeding, exacerbate my anemia, and may require a blood transfusion

*neuropathy

*general achiness and fever-like feelings following infusions

*heart damage and failure

*bone marrow disorder (myelodysplastic syndrome or leukemia)

Dr. Shah also shared statistics on what effect each of the prescribed treatments are expected to do in terms of cancer-free survival, given the specifics of my particular cancer (its stage, grade, size) and my health otherwise.  With no treatment beyond the surgery I have already done plus radiation, you'd expect 16% of women are alive and cancer-free in 10 years.  By adding chemo and the hormonal therapy (Tamoxifen), 63% are alive and cancer-free in 10 years.  That's a pretty good odds increase to put up with some puking, hair loss, and exhaustion.  (Keep in mind that survival with cancer can be for many, many years beyond that, so survival alone is much higher)

She also examined me and said that my healing from the surgery is going very well.  I am still super sensitive near the spots where the drains were pulled, and my right arm (where the lymph nodes were taken) is sore and sometimes very sensitive to the touch.  But I can tell that every day it's easier to move and less uncomfortable.  Today I was extra tired, after having a few days where I was more energetic.  It might have had something to do with the cloudy day, though.  I won't say I'm excited about chemotherapy, but it is the next stop, and I'm excited to get past the surgery stop and on to the next stage.  And the only way to get to the other side is to go through all the stops along the way.  So I say, "bring it!"

More milestones

Continuing on the road to healing, today I:

*Went out to lunch with my dear friend Katie

*Set up (on Facebook) a local nightly knitting group (let me know if you want to be added)

*Made dinner (it was just brats, fries, salad and fruit, but I had to chop and bake and fry and broil)

*Ran the dishwasher (other than needing Mira to lift the detergent and fill it--too heavy)

*Took a walk by myself (to meet Mira after school)

*Started the recovery cardigan

*Had a shower and washed my hair

*Finished season 3 of Buffy the Vampire Slayer

I'm sure you can easily imagine which of these was (by far) the best part, but all really did feel pretty good.