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 ;))

6 of 12

Today was the halfway mark of my second regimen of chemo.  I know that this is the "milder" chemo, but I really don't like it!  I again had less Benadryl, but it was still enough to knock me out.  And I didn't get steroids, which is great--except I won't get the boost tomorrow and Friday, either!  I think I was more up-and-down when I was still taking the steroids.  Now it's just lower-level yuckiness for 6 days--and I feel pretty good Tuesday afternoon until I get chemo on Wednesday! Still, I'm happy to be taking so many fewer meds.  Six more of these.  Done by mid-July.  I can do this!  :)

My labs were good:
Platelets: 106 thou/mcL 
Abs # neut:  2.2 thou/mcL
WBC: 3.3 thou/mcL
Hemoglobin 9.9 gm/dL

My chemo companion was Cara.  She's still recovering from having all four wisdom teeth extracted on Monday, so was able to hang out with me (and watch me sleep!).

I hit a couple milestones cancer-wise this week.  First of all, I hit a point where I'm just sick of being a cancer patient.  I think I told Greg I'd had enough fun (lol) and I was done with it.  Cancer, despite my best attempts, has completely taken over my life.  I guess I knew that it would, and I know it's a limited amount of time, but I'm just so tired of it.  I'm exhausted--each week is noticeably worse.  I'm forgetful.  I have all sorts of little annoyances--the weepy eyes, the running and bleeding nose, horrible peeling cuticles that catch on everything.  And my eyebrows are falling out, which is more upsetting than losing any of the other hair I've lost.  I'm sick of wearing head coverings, but I don't feel comfortable going bald.  And I can't explain just how very tired I am--all the time now. <whine, whine, whine>

The second milestone is that the first friend of mine has been diagnosed with breast cancer after me.  I knew it would happen, given how common it really is, but for some reason, it still surprised me.  I only hope I can be as helpful to her as all my survivor friends have been for me.


~~~~~

I've enjoyed working on the Noro sweater this last week.  Unfortunately, chemo brain won out and it took me three tries to get the (simple) lace done on the bottom of the sweater, but I'm now into the section of just plain stockinette, so I should be good for awhile.  It's such beautiful yarn and changes colors quickly enough that I never get bored with it!

~~~
In addition, I can finally talk about a project I've been part of for several months now.  We've been working on a hope quilt for my childhood-cancer survivor friend Katie.  I haven't quilted in about ten years, and this is the first time I've had a pieced top quilted professionally.  Here's a picture of the finished quilt, with fabric squares contributed by many of Katie's friends:

I wish I had more time (and money) to do more quilting.  I have a box of clothing in my attic for my eventual Mother's quilt, but I don't know when I'll get that done.  Anyway, it was a really fun project.  

~~~

We also got a full-time live-in aide for Mom, and she started this Monday.  So far, I think it's going really well.  Kate is delightful!  She will be splitting time with another aide, who will start this weekend.  What is even nicer is that Kate (and the other aide, I assume) are willing to not only help Mom, but to cook for our family some nights, too.  I've been using way more convenience foods than I like to on the days I work full-time, so this will be such a great help.

~~~

And now I'm off to take a walk with Cara.  I have essentially given up running, as I have lost my energy.  I know it's a vicious cycle where I have no energy, so don't exercise, so I don't have energy, so I don't exercise... :)    I think I'm going to just get through the next 6 weeks of chemo, and then start C25K all over again.  Until then, I'm trying to walk at least a little every day.  

5 of 12

Today put me solidly over the halfway point for chemo (and nearing the halfway for the second round).  My chemo companion was my sister-in-law (and former roommate and dear friend) Katie:

My counts were slightly improved:
Platelets: 92 thou/mcL 
Abs # neut:  2.4 thou/mcL
WBC: 3.6 thou/mcL
Hemoglobin 9.9 gm/dL

Though I gained 2 more pounds in 2 weeks.  Sigh.

I asked a lot of questions (remembered to write them down this time) and got a recommendation for the nosebleeds (saline nasal spray), permission to have an occasional alcoholic beverage (Hello, biergarten, bloody marys & cucumber vodka drinks!), and reassurance that my struggle to find words and multi-task are chemo-related and not brain mets (so I should be challenging my brain to keep it healthy).  I also complained a bit about how I hated feeling so yucky after chemo due to the Benadryl, so Dr. Shah dropped my pre-med Benadryl dose from 25 mg to 10 mg.  She also dropped the steroids from my pre-meds entirely.  I still get the Pepcid (which I found out is another histamine blocker--I'd assumed it was an anti-nausea med), too.

So my request this week is for iPhone apps that you would recommend to keep my brain active.  I've been playing Candy Crush simply for the fact that it's mind-numbing, but Dr. Shah said that, in addition to continuing to work, I should be doing things that really make me work my brain and draw connections.

~~~~~

Some quick fun stuff I did this last week:

Cara has been home for a week now.  It's been so nice to just have her around and she's been so helpful with everything around the house, including:

cooking
Since Cara will be living in an apartment next year, she's learning a lot of cooking, including helping me (my own sous chef) and cooking on her own.  One of the fun things we made was homemade pierogi.  


gardening
I've always been afraid to plant before Memorial Day weekend, so Saturday we planted a lot of things: tomatoes, a tomatillo, peppers, herbs, sugar snap peas, radishes, beets, and horseradish!

~~~~~
knitting
I finished Hitchhiker--which ended up with only 40 notches, so I'm not sure it can still be called "Hitchhiker"

I also finally decided what to make with my beautiful Noro gift.  I'm making a knit tee.  It's knit entirely in the round (bottom up) so I think the Noro will blend and stripe nicely.

~~~~~
Finally, we had a great time on Sunday with our friends Joe and Kristi.  We went out for Mexican food at La Fuente and then saw The Book of Mormon.  The whole night was so much fun, but the musical was even better than I expected!  I highly recommend it--even though I can't stop singing the completely inappropriate songs from it.

4 of 12

It seems strange to keep writing about "nothing" (at least nothing new), but I guess this is my new normal.  I'm still kinda sleepy (and dopey), so not much writing, but I have a lot of pictures to share.

My chemo regimen is/was 4 AC's every 2 weeks and 12 TH's every week.  So whether you are counting number of infusions or weeks, I'm over half done either way. Woo hoo!

This was the week I didn't have to see Dr. Shah--only the nurse.  Unfortunately, my blood counts all dropped and they wanted to check/count them manually, so the time I saved by not seeing Dr. Shah was eaten up by waiting for lab counts!  Numbers were:

Platelets: 88 thou/mcL 
Abs # neut:  1.9 thou/mcL
WBC: 3.1 thou/mcL
Hemoglobin 9.8 gm/dL

My chemo buddy was Laura, who actually took a day off of work to chauffeur me around.  We had a great time catching up over lunch and while waiting for my lab results. :)  

She was an especially good sport since the Benadryl hit me pretty quickly and I actually fell asleep this time. :(

I seem to be developing a pattern whereby the Benadryl knocks me out during and shortly after chemo.  I get home, manage to eat a little supper, then crash (nap) for a few hours. When I wake up, the Benadryl seems to have worn off and the steroids kick in.  The last couple Thursdays, I've felt awesome all day.  Here's hoping that holds for tomorrow as well!

~~~~~
Last Friday I wore the wig in public for the first time--to a graduation party held at Zilber for the Fall and Spring grads.

~~~~~

My friend Bailey got me the coolest print at a local art fair.  The print, and others like it, are on the website ArteryInk.com.

~~~~~

Mira did "Run the Bay"--a 5K fundraiser for our public school district.  I'd hoped to run it with her, but I have been very short of breath and tired lately--my attempts at running have not been good.  She did amazing (24:30) for not really running much since last fall.

~~~~~

Travis won an award from the high school tonight--Outstanding Junior Math Student!  He also got a pin for another year on the varsity Math Team.

~~~~~

And Cara is on her way across the state now, to be home for the summer.  Greg is a champ, as he left home at 6:30 this morning, drove to the Twin Cities, moved stuff for Cara, then packed the CRV to the top to move her home.  I expect they'll be here sometime shortly before midnight.

~~~~~

I haven't posted knitting pics for awhile.  I've been too tired to knit much more than in the waiting room.  I haven't made it to Night Knitting for a few weeks, but now that my job at Mt. Mary is done for the year, I have Tuesday mornings free to knit with that group.

Here's hitchhiker with 38 of 42 teeth:

And Travis' socks are almost done:

I'm ready to finish both of those projects and move onto something new.

I've also pulled out the sewing machine and am trying to find a decent pattern for a lightweight chemo hat/scarf/turban thing.  I've pinned a few patterns and may try to play around with them.  

And I'm caught up on Grey's Anatomy (through this season's finale) and we're on Season 3, episode 19 ("The Price") in Angel.  It's going a bit slower, as my eyes get too tired and blurry to watch more than one episode a day.

3 of 12

Today was the third of the TH infusions.  Kathlynn was my chemo buddy again and we had a yummy lunch (ok, we both ordered breakfast) at Simple Cafe before chemo.  That was good so we had a chance to visit, since I just do not do well with Benadryl and so as soon as the meds kick in, I'm pretty spacey and out of it.

Counts were good. :)  So good, in fact, that I don't have to see Dr. Shah next week (unless something strange happens)--just the nurses.  I follow-up with Dr. Shah in two weeks.

Platelets: 115 thou/mcL (WOOT!)
Abs # neut:  3.3 thou/mcL
WBC: 4.4 thou/mcL
Hemoglobin 10.0 gm/dL

I still have the same weepy eyes, drippy nose, sore throat stuff.  I'm hoping to get to Costco to pick up generic Allegra to try.  Fingers crossed!  I know that environmental/seasonal allergies have been really bad for a lot of people, so it could just be that, or it could be that exacerbated by the chemo.  

New, fun side effect:  chemo brain
I'd been warned about this one, but I thought I was doing pretty well.  My desk is littered with post-it notes, but what seems to be the worse is when I'm interrupted while doing one task to do another.  I completely forgot to send an email last week that I could have sworn I sent. Turns out I didn't even WRITE it (other than in my head).  I'm also having trouble searching for exactly the words that I need.  This is perhaps the scariest of the side-effects for me.  I'm working on compensating (post-its and lists and emails to myself!) and being much more aware of the fact that I can't trust myself to remember anything.

And the exhaustion continues to build.  I think the chemo timing is pretty good, as I get it on Wednesday, am good on Thursday (thank you, steroids!) and Friday, then very tired over the weekend, but by Monday am good during the day and just tired at night.  Still, the every-week chemo seems to be kicking my butt a bit worse than the "nasty" stuff I had every two weeks.  Exhaustion can lead to depression, and I was feeling a bit sorry for myself this past week.  It has been rainy and cold in Milwaukee and that doesn't help, either.  Amazing how a beautiful, sunny day like today helped.  Spring flowers are blooming all over the place--even my lilac is almost there:

I'm just happy to be on my temporary steroid-induced power boost.  I'll take it while it lasts!  

2 of 12

I was a bit worried about how today's infusions would go, given what happened last time.  I've also had nose bleeds all the last week, so I was afraid my platelets might be low, though I haven't had bruises or petechiae or any other signs of low platelets.  But my labs were good!

Platelets: 118 thou/mcL (WOOT!)
Abs # neut:  4.0 thou/mcL
WBC: 5.1 thou/mcL
Hemoglobin 9.9 



My friend Wendy was my chemo companion today.  Wendy and I met through email and La Leche League MANY years ago and we've stayed in casual contact online, but I think the last time we spent any length of time together was the impetus for this article (unfortunately, they've stripped the photos from it).  We had a nice lunch at Whole Foods and lots of time to catch up over knitting.

And the infusions went fine.  They loaded me up with steroids and benadryl again, and I was sleepy (and probably loopy), but no cough or chills.  Hooray! 

Yesterday I had my final "embiggening" appointment at the plastic surgeon.  My expanders are maxed out on both sides, and will stay in place through the remainder of chemo and through radiation.  Radiation will likely cause all sorts of issues with my right side, including encapsulation (warning, link is NSFW--don't click unless you want to see an image of an encapsulated breast).  The doctor said they can clean out the area if it becomes encapsulated, and inject fat to attempt to make it look more normal, but radiation messes up the skin and tissues so much that it won't be a perfect match.  Other than that, he was very pleased with how the expanders are working and he said I was "very even."  Of course, he then said, "you've gained weight, haven't you?"  Then he said I won't see him again until I'm done with radiation, so about 5-6 months.  He told me that would give me time to lose some weight.   I would be offended, except that he's right.  Between the time I found the lump and got the diagnosis of breast cancer, I lost 12 pounds.  I kept it off through surgery and recovery.  Since that time, I have gained those 12 back, plus 10 more.  Twenty-two pounds.  I've gone from running 3x a week, to running about once every 3 weeks.  I'm now heavier than I've ever been other than when pregnant.  I've moved into the "overweight" BMI category.  And I'm eating, and craving lots of carbs.  Hoping this summer will allow me to exercise more and to eat healthier.  Cara has told me she'll help, as she will be home this summer.

After finishing radiation, my body needs to rest and heal for 6 months to see exactly what effect the radiation had before my permanent implants are put in.  So that means I have these goofy breasts for a year, anyway.  None of my pre-surgical bras fit, so I decided that instead of the ugly Target bras I'd been wearing, I'd treat myself to a couple pretty ones at Victoria's Secret (Yeah, I know--retail therapy.  But it worked ;)).

~~~~~

A couple other little things:

There's a line of "empathy cards" that has been making the rounds of Facebook and I found them amusing.  Some are really spot-on, but others just don't apply to me.  My friends have been amazing and really said the right things (unlike my plastic surgeon... ;)).  I *do* think everything happens for a reason.  I smile every time I hear or read "fuck cancer."  But I do love the lemonade one.

~~~~~
While it has been wonderful to have Selenia living with Mom and helping out, it has become apparent that Mom needs to have someone with her around the clock, and that Selenia cannot do that (she has a job and family in the area).  So we are about to start the look for a full-time live-in aide for Mom.  The social worker sent us a list of agencies, but if any of you have recommendations, we'd gladly take them!

~~~~~
As I mentioned above, Cara will be home this summer.  The lab she did research in last summer is closed as the professor is on sabbatical.  She was hoping to get in to do research at the Medical College, but did not get that position.  I am selfishly kinda happy that she'll be here, and we're working on some lab-related opportunities (likely unpaid) for her here.

Travis is in the middle of AP exams, having taken Chemistry and BC Calculus already.  Tomorrow is Computer Science, and then he has English (language) next week.  Poor guy, with his birthday sandwiched in the middle.

And Mira's keeping busy with soccer, Girls Who Code, Green Team, and the Middle School Musical (Joseph and the Amazing Technicolor Dreamcoat), which is this weekend.  She had to get her purple/pink hair cut off for the performance.  :(

Greg's busy wrapping up the semester (and school year) and I'm still job searching, while hoping I might be able to squeeze out some more time at my current job, though my contract ends June 30th.  I have faith that something will work out.