Super busy

Today I had radiation #21 with 7 left to go.  Yesterday was the first time I had any signs of radiation on my skin (other than the allergic rash to Aquaphor, but I don't count that).  I have an obvious sunburn kind of pattern on my chest and upper arm.  It's most obvious in the line at the top of the radiated field. The area feels hot to the touch and a little uncomfortable/pinchy. But after this week, I'll have 3 days off, 4 days of radiation, then a weekend and one last day.  I can do this!  :)

Last week Wednesday I had an appointment with Dr. Shah.  I got my MUGA test results.  Before beginning treatment (chemo and Herceptin), my left ventricular ejection fraction (LVEF) was 65%.  After chemo, it dropped to 56%, but she was not concerned about that drop.  I'll continue to have MUGAs every 3 months until next spring, when I'm done with the Herceptin infusions.  

I also learned that I was accepted into the Phase 2 Clinical Trial for the NeuVax (breast cancer vaccine).  It might sound strange that I'm excited to be getting 10 sets of 4 injections (can't say "immunizations" since I don't know if I'm in the control or experimental group), but I really kind of am!  Someday I'll know which group I was in, but not for several years.

My lab test results were pretty good.  My platelets dropped back down to my normal, but my hemoglobin is quite possibly the highest it has ever been.  It's certainly the highest it's been in my electronic medical history.

Hemoglobin 12.4 gm/dL
White Blood Cells 3.8 thou/mcL (a little low)
Platelets 86 thou/mcL

My weight is nearly the same, but my BMI was recorded as 25.0, which is the very bottom of "overweight"!  I guess that's something. :)

I've now been completely off the Zoloft for 2 weeks (started weaning off a month ago).  I think I'm doing fine, but I did notice that my bad dreams have returned.  Actually, all my dreams have returned (at least the memory of them), but I don't mind the GOOD ones!

My hair continues to fill in.  My eyebrows have both left me completely, and decided to start coming back.


Though I was feeling exhausted a few weeks ago, I seem to have adjusted to the feeling and I've had a lot of chances to do fun things lately.  


I visited with my former classmate Rohan and his wife.
I attended the (beautiful) wedding of my former classmate Katie.
I went to two parties--a birthday party for my friend Scott, and a book release party for my friend Dean.
I went to a mini concert featuring Silversun Pickups with Cara.

The younger kids started back to school yesterday and both seem pretty happy with classes and teachers.

Greg started back to teaching today and he, too, is happy with his classes.  :)

And I got an "add-on" contract to teach PH101 as an instructor (i.e.: not a TA!) at UWM.  That essentially moves me up to being 75% employed--at least until December!  My first class meets tomorrow morning.  Current enrollment is 68 students--the largest class I've ever taught.  I cannot wait!


And to close, we got Travis' Senior pics back.  The CD has 76 photos on it, and choosing my favorites is hard, but here are a few of them.

Halfway there...

Today was radiation #14 with 14 left to go.  So far, it's been so much easier than chemo (knock wood!) that I don't mind the daily visits to the cancer center.   I had a bit of a rash early on, but Dr. Schulz said it looked like a reaction to one of the lotions I was using.  So much for my love affair with Aquaphor!  I'm now using Vanicream 2x a day and real aloe a third time and the rash seems better.

Unfortunately, this weekend I began to feel just generally yucky again.  The cording seems to be coming back.  And I'm tired... I'm very, very tired.  I'm feeling silly for not taking better advantage of the month where chemo was over and radiation had not yet hit me.

But I've done some fun stuff, including attending a few cookouts; having lunch/coffee/dinner/drinks with friends; walking and running; knitting groups during the daytime and nighttime.  My hair continues to come in.  I bought some temporary pink hair dye, but didn't really like the way it looked.  I'm enjoying having all the kids home for the last few weeks of summer.  And I'm gearing up for fall semester!


Not much new or exciting, but normal is kind of nice, too.

Radiation Simulation

Wednesday I had my simulation appointment in the radiation oncology department.  This was to get everything set up for me to start radiation next week.  (Edited to add that I'll be going daily, M-F, from August 5-September 14, at 4:30 each day)

They brought me in and had me lie on the narrow, hard CT scan platform with my arms over my head and my head facing away from my right breast.  There were lasers that lined me up correctly, so I got poked and prodded until I was in the right position.  I was lying on a sort of foam pad that the techs shaped around me while removing the air from it.  This made a form of my upper body so that I'll be in the exact same position every time I get radiation.  

Dr. Schulz (the radiation oncologist) then came in and marked me up with a red Sharpie so the techs knew where to place these stickers with wire on them.  The stickers show up on the CT scan so the lasers can be correctly set to hit the right spots.  Then I had a quick (but uncomfortable) CT scan.  Dr. Schulz looked at it and then came back in and put more marks on me.  Then the techs gave me five tiny little black square tattoos (again, for lining me up correctly in the future).  

I circled the tattoo so you can see it--LOL

The first of the tattoos felt like I was being poked to draw blood. The second felt like I was being poked with a toothpick.  The third and fourth were really painful (low on my sides at the bottom of my ribcage) and the fifth was again a toothpick prick.  Not the most exciting tattoos!  It did get me thinking of what I eventually want tattooed on my "breasts."  There is some beautiful tattoo art on the web (google "post-mastectomy tattoo" to see some), and it is fun to think about designing something unique.

Overall, I feel like my recovery is going very well.  As of this week, I'm feeling more normal than not.  I'm sleeping less and just generally feeling better!  Of course after a great week, I'm really tired today (Friday).  However, I did have a pretty active week this week.

I had my first (and second) drink since before surgery in January.  I went out with my dear friend Nancy on Wednesday for Effen Good cucumber martinis at Bar Louie.  Yum!  And it was so nice to catch up with her.

Thursday we went out with Greg's parents for Travis' (belated) birthday.  Cara and I had been shopping earlier that day and Costco had the cutest maxi dresses on clearance, so we each bought one and wore them that night.

At the risk of jinxing it, it seems like the neuropathy is getting better.  It's not gone, but I can walk farther and my feet are no longer excruciating at night--just sore.

The discoloration of my nails (caused by the AC) is growing out.

I was discharged from OT as the cording went away!  I don't doubt that it'll come back at some point during radiation, but I'm happy to be free of it for now anyway.

I've also started to eat better and exercise more.  I'm using Lose It, and not really making it within my desired calorie counts, but I'm closer.  And I've dropped a few pounds.

I'm beginning to see glimpses of life beyond cancer.  I've started (again) looking to see what full-time jobs are out there.  Not applying yet, but looking.  

Life is good.

Life after chemo

It's taken about a week to compose this blog post in my head.  At least part of that has been the hope that things would get better before I wrote...


There is definitely some good.  I had a wonderful visit with my college (undergrad) roommate Cheryl.  She stocked my fridge and freezer and talked to me not only about cancer, but about not-cancer!  She got me excited about the possibilities of work in the future and maybe (just maybe) some academic/research collaboration.  It was just what I needed!

~~~~~

And my friend Jim sent me the coolest book, which I am looking forward to reading, for inspiration:

~~~~~

My hair is coming in for real now, and it's been hot enough in Milwaukee that I stopped wearing head coverings.  It's not a particularly attractive look, but I've been assured that I have a "nicely shaped" head and (like I said) it's too hot to care that much!

~~~~~

So now it's been ten days since my last chemo.  Mentally, I'm doing GREAT!  I feel that I have more energy and my brain just seems to be working better.  My life had become post-it notes and iPhone memos to myself to remember the simplest things, and it seems like at least some of that part of my memory is coming back to me.  Besides, the knowledge that I no longer have weekly poison coursing through my veins is pretty cool.  :)

But the peripheral neuropathy is bad.  I can handle the numbness and tingling in my fingers and hands--I've learned to be more careful when chopping vegetables!  But my feet are awful.  I know that exercise is good, and I was proud of myself for walking two miles, but each time I've walked very much, I've been up half that night in pain.  I don't know what to do to make it better!  Dr. Shah said she could prescribe medication to help (Lyrica), but I'd rather see if it improves on its own.  I have noticed that it seems to have progressed from pure numbness to pinprick pain, so maybe that's a good sign (?).  I wish I knew whether it was better to keep walking/exercising so as to push through the pain or if it's better to just rest.  I guess I'm pretty happy I have essentially a desk job now.  I could not be doing home visits very easily.  So if any of you have been through this and have tips or advice, I'd really appreciate it!  I know it's not even two weeks, so I need to give it time. Anyone know how much time?  LOL

On the other hand, OT seems to be helping with the cording again.  My range of motion is almost back to normal and the cording itself is much decreased.  I can tell I've lost strength in my arms, so am thinking of getting some small barbells to work on that--something I could do while sitting down.

And it's time to start the weight loss/healthy eating plan again!  My dear friend Susan is going to do "Lose It!" with me and we'll encourage each other.  (If any of you are on and want to join in with the encouragement pact, I'm there with the email loria (at) kjsl (dot) com).  I'm going to try Aqua Zumba with my friend Darcy, too, hoping it will be more gentle on my feet.  And I'm still considering yoga, but am a bit overwhelmed with all the possible levels (and my complete lack of balance and tone).  Still, I have high hopes that I'll be in much better shape by the first of the year--that's how long I'm giving myself to shape up!

8 of 12

(I think I have a formula down for these posts... hope they've not become as boring to read as a Danielle Steel novel...)

Today I felt so lucky--my chemo companion came all the way from California!  This is my dear friend Sam, who was one of my first students at my second job after graduation many years ago.  We got lunch at Whole Foods, and then caught up on the last <ahem> few years of our lives.  She might get me to join Instagram yet...

My labs were fine.  
Platelets: 93 thou/mcL 

WBC: 3.2 thou/mcL
Abs. neut: 2.1 thou/mcL
Hemoglobin 10.1 gm/dL 

My hair seems to be doing very contradictory things.  For example, my eyebrows are almost totally gone, and I am *terrible* at drawing them in.  Eyelashes are leaving, too.

The other thing that's unbelievably annoying is the loss of my nose hair.  I never gave much thought to what function nose hairs served, but I can tell you that my allergies are in full swing and I now know what nose hairs do...   (I'm continually clutching a kleenex now)


However, I'm doing pretty well growing the peachfuzz on my head.  I came home today and immediately pulled off my scarf (as I often do when I walk in the door) and Cara exclaimed, "you have a hairline!"  It's not a great photo, but I like how my hair kind of forms a glowing halo over my head here:

Finally, I got the coolest gift this week.  We have family friends who are halfway through a two year stay in Singapore.  They got me this print:

It says, "cancer sucks!"


This week my two recently-diagnosed friends have surgery.  One had a mastectomy (with reconstruction) on Monday and the other has a lumpectomy tomorrow.  It's been almost half a year since my surgery, but I can remember it all very clearly.  I'm thinking of those friends and hoping for the best, quickest, recovery possible.  I hope many of you will do the same with this week's good thoughts normally reserved for me.  :)

7 of 12

Today I'm solidly over the half-way mark for "Baby Chemo" (as Dr. Shah calls it).
My labs were good:
Platelets: 108 thou/mcL 
WBC: 3.3 thou/mcL
Abs. neut: 2.3 thou/mcL
Hemoglobin 10.2 gm/dL
Bailey was my chemo companion, and we had a great time catching up over pizza at Ian's and at the Cancer Center until the Benadryl overtook me and I fell asleep.

There's not much new to add, except that the little things are bugging me and I am (definitely) growing weary of this whole thing.  I talked to Dr. Shah about some of the little things and she said that the pain I've been feeling in my fingertips is actually one of the possible manifestations of peripheral neuropathy.  That's a common side-effect with lots of chemotherapies, and so we will watch that to make sure it doesn't get worse.

Beyond that, I'm still so very tired...  I gave in and took a nap last Friday afternoon when I got home from a half day of work.  It refreshed me so much that I did the same on Saturday and Sunday!  And then I brought a sleeping bag to work just in case...  Didn't use it, but it's nice to know it's there.  I think I might do better spending part of my lunch hour napping than eating.  :)   Everyone (Dr. Shah and those who have been through this cancer journey) tells me it will only get worse as the chemo continues--and into the radiation.  

It's interesting because I have only started to lose my eyebrows (and eyelashes) since being on the Taxol (second set of chemo).  However, I've noticed over the last few weeks (since being on Taxol) that I've got peach fuzz growing on my head (and, unfortunately, my face).  Dr. Shah said that some people start growing hair again with Taxol since it's milder than the AC (original chemo).  I can't tell if it's blond or gray, but it's definitely lighter than my natural hair color.

And I now have a second friend to be diagnosed with breast cancer after me.  I know it's going to keep happening, but it's still shocking.

~~~~~
Additionally, I have some Mom stuff to share.  It's now been a little over a week with a 24/7 live-in.  I think it's going well, and I can certainly say that I'm feeling less stressed, knowing that someone is there for her and I don't have to worry that at least one of us will be home every hour of every day.

Also, Mom had a brain MRI today and it came back clean!  That's about 2 1/2 years since the brain mets were discovered and since her brain surgery.  Definitely reason to celebrate! (If only I had the energy to do so ;))

#4 of 4 AC's down!

Today was my fourth--and final--infusion of Adriamycin and Cytoxan (AC), which are supposed to be the nastiest of the chemos I will be getting.  My dear friend Kathlynn (who, as a retired nurse has saved my sanity many times when I've called her with panicked medical questions) was my chemo buddy today.  We knit, chatted, and even got in a few games of cribbage!  

My labs were good:

Abs# Neut Calc 4.2 thou/mcL
Hemoglobin 10.3 gm/dL 
Platelet Count 103 thou/mcL 
White Blood Cells 6.4 thou/mcL

Dr. Shah said the killer cold I'm dealing with might actually be a form of allergies, since chemo messes up all sorts of stuff in the body and the way it responds to things.  Since this will be my last Neulasta shot (tomorrow), I can stop the Claritin in a few days and switch to Zyrtec to see if it is more effective in getting my eyes and nose to stop running and therefore make the sore throat go away.  I can't say enough about how effective the Claritin has been at keeping the Neulasta-induced bone pain at bay, though.  Wow!

And I cannot put into words how happy I am that I was able to complete all four doses of AC at full strength and on time.  A little cold/allergy gunk is nothing to complain about since I got those hard-hitting meds in and tolerated them quite well!  It felt great to rip off that last purple link:

In two weeks, I will start the first of twelve weekly infusions of Taxol and Herceptin, which don't require Neulasta or steroids (and possibly not even Zofran, but losing that scares me!).


Other things that happened last week included an in-between visit to the Cancer Center for bloodwork on Wednesday to make sure my platelets didn't bottom out.  (We were thrilled to see that they'd rebounded to 99K, as many of you saw me post on Facebook.)

I also attended the American Cancer Society's "Look Good, Feel Better" session last Monday.  Volunteer makeup artists show women how to deal with the loss of head hair, eyebrows, eyelashes, etc.  And cosmetic companies donate products, so I came home with a big makeup bag full of freebies, along with tips on how to apply makeup.  Best of all, I met three women there who had wigs, and they talked me into getting one.  If nothing else, I figured it would be a good idea to wear one when/if I get any job interviews.  I won't hide the fact that I have breast cancer, but walking in with a scarf or a bald head kind of screams it, so I thought the wig might be wise.   Here's some photos of me in my new "hair."  It's a Raquel Welch wig (ooh la la!), which Greg said will go well with my fancy new breasts.  :)

 

Other than the cold/allergy stuff, my only side-effect of note is the tiredness.  I am (quite literally) in my pajamas by about 6:30 and in bed by 8:00 every night.  I am lucky that I am able to just go with it and let my body rest when it needs it.  I just keep thinking that timing is everything and I am so very glad that I finished Grad School before all this.  There's no way I'd have been able to stay awake for everything school required.  And I'm happy again for two jobs that I love, and work that I am able to leave at work at this point in my life.  Life is good.

Hair things, head things, and happy things

As promised, here's pics of my bald head after the dried henna was washed off.  

I'm a little disappointed in how light it is, but I think that's because the skin on my head is not as thick and dead as on hands and feet (my usual henna locations).  As comparison, look at Cara's foot:

I'm also sharing pics of the girls' hair.  Cara said she WOULD shave her head for me, but wondered if I'd be okay with her just coloring it for me.  So I bought a kit to bleach and color with purple, and she and Mira both did it last week.  I *love* the colors!

 





The last week has been both nice and challenging.  It was wonderful to have Cara home and she was so very helpful with everything--cooking, driving, entertaining, etc.  But the combo of my cold and chemo has really knocked me on my butt.  I am exhausted most of the time.  I also am having vision problems.  One of the side effects of several chemo drugs is swelling of the tear ducts, that results in excess tear production.  I definitely have that!  Add in sensitivity to light and general eye blurriness and it's really kind of unpleasant.  I spend a lot of time resting my eyes, which (when exhausted) results in naps.  Yesterday was one of those days.  I've also had the steroids increased to counteract the drop in platelet counts, so my sleep is off.

Friday the kids and I went to the Art Museum.  We were disappointed to find that all but the special exhibit was closed for renovation.  But it took an hour to walk through the special exhibit and the supplementary exhibits (videos and images of the permanent collection), which ended up being a perfect amount of time for me to be out.  All three of my kids have been fortunate enough to participate in Junior Art Docents, so we stop to visit their chosen pieces every time we're at the Art Museum.  Trav's was the only one that was on display this time, though, so we had to take pics of the girls by the photos of their pieces.  :)

 

Today I felt a little better.  Cara left to get back to the Twin Cities at 9:00, so we were all up "early" to do Easter stuff.  It's still fun to watch the kids do the egg hunt--even when they have found all the good spots from the last 13 years.  :)   I took a short bike ride with Mira & Trav this afternoon, and then ended up doing a bit of yard work.  It felt good to dig in the dirt and smell the fertile soil.  Bulbs are popping up all over the place and I think a little rain will bring some blossoms.


I've done a lot of cooking (and eating) this weekend, too.  We did Easter dinner on Friday since Cara wouldn't be here today.  But Mira got invited to a sleepover, and Travis to a guys' gaming night, and Greg had a meeting out of town, so Cara and I ate Easter dinner on Friday.  It was good anyway (ham, Greg's mom's cheesy potatoes, butternut squash, asparagus, rolls).  Today I made split pea soup with the ham bone to have for tomorrow's supper, along with ham salad with the rest of the ham.  We baked S'mores bars and Cara made some awesome guacamole.  The kids dyed Easter eggs on Saturday, so I made a batch of deviled eggs with bacon, jalapeños, cheese and wasabi.  I made a Mediterranean bean dip for the Healthy Snack swap at work tomorrow.  And we went out with Greg's parents for Cara's birthday last night.  Lucky Liu's salt and pepper catfish was fantastic!  I guess I'm still happy that I haven't lost my appetite!

I hope everyone had a wonderful Easter with family.  That's the very best part!

Three down!

Today was my third AC (Adriamycin & Cytoxan) infusion.  I was afraid it might not happen, since I am still somewhat battling this awful cold.  And it almost didn't happen--but not because of my cold. Dr. Shah looked at my blood tests and was happy with my white counts (4.5 thou/mcL; abs. neut. 2.5 thou/mcL) and my hemoglobin (11.0 gm/dL), but my platelets are low again (58 thou/mcL).  They're so low that she hemmed and hawed about whether to decrease the chemo concentration (less effective) or delay this round (boo!).  Finally, she decided that because I am handling everything else so well, and I have a history of low platelets, and am on the borderline for dangerous levels, she'd keep the same treatment and just add another day of dexamethasone (oh, yay--prolonged steroid munchies!).  I have to be extra diligent about bleeding, bruising, bumping and if I have any of those, or unusual headaches, go straight to the ER.  In addition, I have to go back next week to have my CBC checked to make sure the platelets haven't gone dangerously low.  (The first round of chemo, I started at 107 and dropped to 34 at the one week mark, so starting at 58 could potentially drop me into the danger zone at one week.)  The AC chemo is the "big guns" so I really want to be able to get all four treatments in at full strength.  The next 12 rounds won't be quite as nasty and hopefully my body will tolerate them better.  Since the biggest side-effect of this first set seems to be the blood counts, I'm hopeful that it won't be an issue (or at least not as big of an issue) when I move onto the TH (Taxol & Herceptin).  I appreciate all high-platelet vibes sent my way.


Cara was my chemo companion today, so I got to show her off to the staff.
We played a little cribbage, and just like her brother did last time, she allowed me to win.  We decided that my chemo-induced super power seems to be winning at cribbage, and thought that was a rather lame super power, except that with great power comes great responsibility, and this is a minor power, so minor responsibility.  That's fine, too.  :)
I'm getting a little braver about going bald in front of people.  I got warm during chemo and took off my cap (although I certainly was not the only bald person in the chemo center, so I'm not sure that really counts).  I also tried on a hat at H&M outside of the dressing room.  And when my father-in-law was here for Grandparents' Day at Mira's school and commented about no one wanting to imitate his hairdo, I didn't even pause before whipping off my hat to show him that I saw his hairdo and raised the bar!  
And tonight Cara's roommate Ellie came over, and she and Cara (with a little help from Mira) tattooed my head with henna.  The henna has to stay on for hours (until it flakes off) and the final design will be lighter, but here's some pics from the henna application.

~~~~~
In other "normal" news, I worked a 10 hour day yesterday for the first time since finishing Grad School.  I was tired at the end of the day, but I did it!  And I think I was at least mostly there brain power-wise.  


~~~~~
And we found a wonderful woman named Selenia who is going to be staying with Mom to help do the little things that Mom's not able to do on her own.  We're all pretty excited about her moving in today.

And it's gone

From the time I was diagnosed, I joked about losing my hair.  Bright side of breast cancer treatment?  New, perkier breasts and possibly new, less-gray, maybe curly hair afterwards.  :)  I did not think it would bother me in the least--especially since the hair loss is just temporary.

So I was surprised that it hit me harder than I'd expected.  I'd assumed that as soon as the hair loss was apparent, I'd shave my head and get it all over with.  But as some of the hair started to drop (on Thursday and Friday), I found myself clinging to what was left, and wondering if I'd be one of the people whose hair just got thinner and didn't leave entirely.  However, yesterday, as I sat in the backyard, tugging at my hair to stop the itching, I realized that wasn't going to be the case.  

As I tried to find the silver lining in this latest stop on the breast cancer express, I came up with this:  I'd actually been a bit concerned that the chemo wasn't doing anything.  I was expecting horrible side effects and a miserable couple of months (which I realize could still happen), but I'd only had some minor ickiness and blocks of time feeling bad.  This--the hair loss--is indisputable proof that the chemo is going in, coursing through my veins, and affecting the fast-growing cells as it should.  This is good.  This is comforting.

Then this morning in the shower, I looked down to see a pile at my feet.  And when my hair dried after the shower, there was an awful lot of scalp showing.  Definitely time to go.

So Greg put on some Sinead O'Connor, and shaved my head.  

I'm not quite ready for the bald-reveal yet--at least not on the internets.  I'm sure I'll get there in time.  For now, I guess I'm happy that it's cold enough that I'll want to wear a hat or scarf. My dear friend Katie, a cancer and chemo survivor herself, gave me the gift of a wonderfully warm, soft hat made by Turtle Fur, and that's what I'm rockin' for now.

~~~~~

My appetite is still pretty good.  The hardest thing is keeping hydrated, because I've just never been one to drink much (alcoholic or non-alcoholic!  LOL).  So I end up eating soups, as they are comforting, nutrient-rich, and hydrating.  I bought another giant pack of bone-in chicken thighs yesterday and made another double batch of bone broth per the recipe in The Cancer Fighting Kitchen.  Popsicles are a good fall-back, too.  I've also stocked up on fresh fruits and veggies so when the steroid food rage hits this time, I will try to eat less calorie-dense foods.  

Today I found out that just cooking was about as good as actually eating.  I made all sorts of stuff:  Crockpot pork and gravy, nokedli, and broccoli cauliflower casserole plus berry crisp for supper tonight.  It felt good to be in the kitchen!

~~~~~

And I'd not posted our choice of binge-watching TV since completing Buffy.  We will eventually move on to watch Angel, but needed a break from that.  So we watched Transparent.  And I really enjoyed it!  We're open to suggestions for other binge-watching.  We have Amazon Prime--not Netflix.  I also want to go back and re-watch Big Love again since it's been years since the last time.