Explanting

As I'd written about earlier, I decided to get a second opinion on potentially taking out my implants. One of my biggest regrets with all of my treatment was the fact that I did not get any second opinions. It wasn’t necessarily mandatory, as I decided early on that I trusted my care team, and needed to spend my energy getting through treatment and all other things. But was a very strange approach for me to take, as I’d done just the opposite for all of my family members’ illnesses—reading up on everything I possibly could. I have since come to realize that it was a necessary self-protection at that time. I don’t really regret any of the treatment that I got, and I don’t think that my care was harmful in any way. But given that I have had such issues with my implants since the beginning, I can say (with 20-20 hindsight) that I wish I’d have gotten a second opinion on plastic surgery. Most of all, I wish I had known that it was possible to reconstruct later and that I didn’t have to rush to work with a plastic surgeon from the start. 

After seeking referrals from several others who had been through different types of breast reconstruction, I decided to see Dr. Kinney, although reviews were also mixed on him.

I am so glad that I chose him. He spoke to me as an educated person and he listened to what I wanted (or thought I wanted) and explained possibilities. Most of all, he repeated that whatever decision I made now did not have to be a permanent decision. If I decided to go flat, I could come back in a year or two or ten and he would be able to construct breasts from either my inner thighs (bonus!) or my butt. (Since Sterkin had already used my stomach for liposuction, that would be a bit iffier, but potentially also possible.) He explained the method of surgery that his office does for reconstruction which, unlike “older” methods, uses fat and the fat’s blood supply and does not touch any muscle. And that he will use implants if someone wants them, but that fat makes a softer, nicer breast, so he seldom uses implants. He acknowledged that Dr. Sterkin is an excellent implant surgeon, which I would agree with. Finally, he told me that he could take out the entire capsule (en bloc) surrounding the implant and wouldn’t have to leave some behind, like Dr. Sterkin said he would have to do. I told him that Dr. Sterkin was concerned about causing a pneumothorax, and while Kinney acknowledged that it was a possibility, he has a technique to minimize that happening, and even if it did happen, it simply meant that the lungs would have to be re-inflated and I’d have a chest tube until it healed. (Not something I’d enjoy, but if it means the full capsule comes out, it’s a worthwhile risk, I think.) He also said that he would remove the dead fat from my other surgery (to put in the implants) and send it to pathology to ensure that it is, truly, only dead fat. After two and a half years of wondering about that, I consider that a welcome bonus. 

So my explant surgery without reconstruction is scheduled for 11:00 am on Tuesday, June 18. It will (hopefully) be an outpatient surgery. I will (hopefully) be out of work for only a week, and off my bike for two weeks (can ride a stationary bike, but not move my arms). And then I’ll have PT (with the amazing Dr. Leslie Waltke) and hopefully the pain and numbness and shoulder issues will be better. And my favorite “perk,” as told by one of the bike salespeople where I bought my new bike (more on that later) is that by going flat I’ll be more aerodynamic on the bike! If I feel the need to have “breasts” that are about as functional as the fake ones I currently carry, Cara has promised to knit me a pair of knitted knockers. (Actually she thinks I should build a collection, all lovingly hand knit by friends.)

One more thing about breast implants:

I had posted before about the increasing link between textured implants and breast implant associated lymphoma (BIAL). There have been hearings recently, in front of the FDA, asking for removing textured implants from the marketplace. Several other countries have already done so. Basically, the US FDA will not be removing textured implants, but will increase the reporting requirements of adverse effects and increase the notification and warning to women before they get implants. One other thing that came up in the FDA hearings is something called “breast implant illness,” a non-specific autoimmune disorder that has been used to describe such varied symptoms as fatigue, skin disorders, intestinal upset, and almost anything else that you can imagine. I must admit that I have brushed it off, as there are so many disorders without scientific basis that are somewhat a product of suggestion (culture-bound syndromes). And most of the symptoms that have been blamed on BII are symptoms that arise from most breast cancer treatments. But the FDA, while not going so far as to acknowledge that BII exists, did agree to include the possibility of immune dysfunction following use of implants, and added that to one of the things that women should be warned about prior to surgery with implants. And while I’m still not 100% convinced, there does seem to be some anecdotal evidence that women with an existing autoimmune disorder have more symptoms after getting implants. I do have an autoimmune disorder (ITP), and I wouldn’t complain if, by removing these implants, my body aches, fuzzy brain, immense fatigue, and any other symptoms disappear!

Since my last post, I have had another 6 month check with Dr. Shah (still NED!) and another round of Zometa infusion. Dr. Shah is pregnant again with another little girl. What a great measure of time moving along, as I was nearing the end of my active treatment when she was pregnant with her first. I had insurance issues with getting the infusion the same time as my Dr. Shah appointment, so I got two appointments instead of just one. It did give me a chance to try out being poked in my lymphedema arm, however. And the phlebotomist got me with her first poke and I didn’t bruise or anything.

Greg surprised me by showing up at my infusion, since it was at the end of the day. And when I got home, he’d bought flowers. Given how hard the infusion hit me the last two times, I decided to pre-medicate with Advil and Tylenol before and through this infusion. I took a total of seven rounds of 1 Advil + 1 Tylenol, and not only was it much less terrible of a process through the infusion, but that many NSAIDs had me pain-free for the first time in ages. I literally was skipping around! I certainly can’t take that many NSAIDs regularly (besides liver and kidney damage, it’s not good for me to take them with ITP), but if I have something big coming up (like, say, riding a Century…), they could be helpful. J

Which brings me to my other big news—which those of you who read my Facebook already know.  Team Phoenix introduced me to biking, which I love. And I started 2019 with a goal of riding 2019 miles this year. I also want to ride a century (100 miles). Which is possible, but would be more difficult, on a hybrid. So all my biking friends have been telling me that I should get a road bike. While I was going to wait until next year's big birthday, I taught a class at UWM as an adjunct, which gave me some extra money that I wasn't expecting. And so I decided to look at bikes. And somehow, after months of comparing online and in stores, I ended up with an amazing, beautiful, fast road bike, who I call Roz. I feel quite spoiled, but she makes me very happy.

(Photo from Trek website)

Surgery in one month from today. I can do this. :)

Two years

Facebook reminded me that it's been two years since I started this blog (with this post), but I've been keenly aware of all the two-year "anniversaries" in the last 5 weeks.  It started on Thanksgiving day, which was the two year mark since I first found the lump.  It brought me back to those stressful weeks not knowing, and then, knowing, but not saying anything about it, and not *doing* anything (i.e.: surgery, chemo, etc.).  I remembered all the feels of seeing my primary care doctor, sneakily having my friend Everett cover my classes so I could get the diagnostic mammogram and then the biopsy done (and letting him think that I needed the time for my Mom's medical issues).  I remembered reading and getting more and more scared as I learned the characteristics of my cancer (HR+, HER-2+) and the side effects of the probable treatments.  I remembered worrying how I'd start a new job in the midst of treatment and how I'd get through graduation and Christmas, knowing I had a cancerous tumor inside of me and that I wasn't doing anything about it.  Each memory brought a little more anxiety and I worried about what D-day (diagnosis day--when I actually heard the words "you have cancer") would bring.  And then, to my amazement, it was December 6th and I had completely missed December 5th--D-day.  And I think that, in many ways, that represents the way my whole cancer journey has gone--fear about things that ended up not being that bad.  

Sure, when you look at the whole picture, this really sucks.  Getting cancer at age 44; having ALL THE TREATMENTS with their associated side-effects that I'm still managing, and always will be; all the time and the money spent on trips to medical appointments (I'm up to 171 appointments; no impact on my day-to-day there!); the ever-present fear of recurrence or metastasis...  But on the whole, I handled treatments well, and so far, treatments are working (fingers crossed ;)).

I haven't blogged for three months, and in some ways a lot of medical stuff happened in that time, but in other ways, not much happened at all.

I've continued with my clinical trial, and my suspicion was confirmed.  All along, I've felt that I was in the control group.  Basically, the immunological tests were all showing no response, so I knew that either I had the control or it wasn't working.  This time, after giving the booster, the oncology nurse left behind the bag that the injections were stored in.  It clearly read "Neuvax-CTRL."  So while I "knew" I was getting the control, I didn't really *know* it until last month.  And I still have to go in twice every 6 months to give 8 vials of blood.  It's a little harder to do that, but I know that control groups are also important in clinical research, so I'll do it.

The scariest thing that happened was in late October.  After my final reconstruction, I had to be very careful to not move my implants, so I really didn't touch my new "breasts" for a long time.  But I was having lots of stiffness on my radiated side and I feared that the scars were sticking, so I got permission to begin some gentle massage on the scars.  It was then that I found a lump in the exact same spot that my original main tumor was located (10:00 on my right breast).  I told myself that it was likely lumpiness from the surgery--I even called my oncologist's office, who said it was probably post-surgical changes.  Because they didn't know what my breasts felt like prior to surgery, they wouldn't examine me to be sure that's what it was, though.  I had to see my plastic surgeon--who couldn't get me in for weeks.  Finally, after several appointments and "it's probably nothing" comments, I ended up with an ultrasound that proved that it was, in fact, just necrotic fat that did not vascularize when Dr. Sterkin did the liposuction and injected fat over the implants.  Who would have thought that the phrase "dead fat" would bring such joy?  

I've been faithfully wearing my lymphedema sleeves and gloves day and night, and the lymphedema has not gotten worse.  Unfortunately, it hasn't gotten better, either.  In addition, I was somewhat babying my right side and lost a lot of strength in that arm, and also had a lot of tightness post-surgery, so got referred back to Audrey, the OT.  I'm getting stronger, and have a ton of exercises for strength and stretching, and have been discharged from OT again (after 2 months).  But Audrey has said that I'll likely need to wear a sleeve the rest of my life since the swelling hasn't gone down in 5 months.  

The actual sleeves are a bit more attractive than the makeshift one I originally had.

However, I might have to invest in one of the cool sleeves that LympheDIVAs sell.  Greg thinks I should get the cyborg one:

All in all, things are good.  I'm still vaguely annoyed with how tired I am--though at  least some of that may be due to age!  And while the Femara is not as bad as either Arimidex or Tamoxifen, I do still have joint aches.  I also had a bone scan, which showed no signs of osteoporosis, but some pretty bad arthritis in my right knee.  I've pretty much given up on running, but am trying to walk (at least 10,000 steps per my FitBit) every day.  I'm considering doing some sort of a gym thing--which came to mind when I realized how weak I'd gotten.  Considering yoga, too, although I'm not a huge fan of it yet. Open to suggestions of fun ways to stay fit!

Finally, we had an absolutely magical Christmas.  All five of us spent five days in Puerto Morelos, Mexico.  The sun, green things, warmth (magic for my arthritis!), and family time was perfect.  One of the coolest things was doing yoga in a pagoda in the ocean.  If I could do yoga that way all the time, it would definitely be my exercise of choice!  I mean look:

The trip was one of the many Good Things that cancer brought.  Pre-cancer, there is no way I could have justified spending that much money on a vacation.  And we would have missed out on those five amazing days.  The memories made on our trip far exceed any joy that would have come out of making an extra mortgage payment ;).  

So on this New Year's Day, 2017, I resolve to say "yes" more often, and to make fun a priority.  I would ask all of you to do the same.  Don't wait until it's forced on you.  And if you have something particularly fun in mind, feel free to ask me to join you.  I'll try my best to say yes.

Keep on keeping on

I know it's been a long time since I've blogged here, as a few of you have asked me when my next post will be.  I've composed a few little posts in my head over the last 6 weeks, but not really felt any of them were important enough to share.  But now there's a lot of little things.  

So this week marks a year since I started chemo.  It was strange to sit in the Cancer Center for my Herceptin infusion this week and think about that.  On one hand, it's been one looooong year.  On the other hand, it's only been a year since meeting all the oncology nurses and aides, and really getting to know them all so well (when you see them at least every three weeks, and as frequently as 2x/week, they become a big part of your life!).  

I had my third-to-last Herceptin this week on Wednesday.  If all goes well, my final infusion will be on April 13th.  I asked Dr. Shah if I could make an appointment with Dr. Lal on April 14th to pull out my port-a-cath and she laughed and told me she really prefers for her patients to keep them in for a year after treatment concludes (she didn't add the unspoken "just in case..." but I heard it anyway).  She said that she understood my desire to get rid of it, and if I really wanted to, I could get it taken out, but she recommended I see if Dr. Sterkin (the plastic surgeon) could just pull it out when he finished the reconstruction this Spring/Summer.  I have an appointment with him on March 21st, so I'll ask then.  

Several of my BC survivor friends are on aromatase inhibitors (Arimidex is most common) instead of Tamoxifen, as the early studies show that it is more effective, and without as many dangerous side-effects.  Tamoxifen can be used whether you're pre- or post-menopausal, but if you're still pre-menopausal, you can be given Lupron injections to essentially shut down your ovaries since Arimidex only blocks estrogen from non-ovary sources.  Dr. Shah and I had talked about me switching after about 2 years of being on Tamoxifen--to insure I'd gone through menopause and therefore wouldn't need the Lupron shots.  The more I've read about the aromatase inhibitors, the more I think it makes sense to get on them ASAP.  Studies have shown significant reduction of breast cancer recurrence in using them over using Tamoxifen, if you have cancer that's responsive to chemotherapy (If you don't need chemo, Tamoxifen is just as effective).  This is especially true in the first year (RR: 0.64 (0.52-0.78)) as well as in years 2-4 (RR: 0.80 (0.68-0.93)).  Furthermore, ten year mortality was also significantly lower with aromatase inhibitors (RR: 0.85 (0.75-0.96)).  All relative risks included for my Public Health friends.  :)  In addition, the already-known benefit of aromatase inhibitors is the decrease in endometrial cancers (RR: 0.33), though there is an increase in bone fractures over Tamoxifen use (RR: 1.42).

So I talked a bit more to Dr. Shah about it and since I will be 1 year LMP this month, she suggested they check my hormone levels to see if I'd gone through menopause on my own. She said that sometimes chemo causes reversible menopause, so she would want to re-check them in three months, but that almost gets me through the protection of Herceptin, so I feel okay about that.  I haven't talked to her yet, but I did get my hormone level results and they're pretty supportive of me having truly becoming menopausal:

FSH: 82.5 mIU/mL  (25.8 - 134 is indicative of being menopausal)
LH:  39.0 mIU/ml (pre-menopausal is 5-25; menopausal is 14.2-52.3)
Estradiol:  <5.0 pg/mL (pre-menopausal is 30-400; menopausal is 0-30)

I won't see Dr. Shah again until my last Herceptin (6 weeks), so I'm sure we'll discuss the plan at that point.  

As long as they were doing blood tests, she ran a CBC again.  Almost all my levels were good except for the platelets, of course.  They were 76 thou/mCL.  My hemoglobin is still low (11.7 gm/dL), but relatively high for me!  

Dr. Shah also scheduled me for my final (?) MUGA heart scan.  That's scheduled for the 21st.  Hopefully my score continues to climb and any potential heart damage from the chemo was reversed.

This week was also exciting because I was (again--third time's a charm?) discharged from OT.  As lovely as it has been to get a massage every week, I'm pretty happy to not have to make another trip to Water Tower Medical Commons.  I hit a kind of low point in February when the unfairness of having to use vacation time for my doctor appointments hit me (I don't have any sick leave yet).  In Grad School, I had tremendous guilt about taking any time off, so I'd planned to actually take a vacation after graduation, and then recovery was much rougher than I thought it would be, so very little fun was had.  Now I have a full-time job with paid vacation and I didn't plan to use it to attend medical appointments!  I shouldn't complain, because on the other hand, I *have* vacation time, so I can still be paid while seeing the doctor, the dentist, the OT, etc.  Many others do not.  I will finally have earned that sick leave about the time my appointments switch over to "infrequent."  Here's hoping I get to bank almost all of that earned sick leave.  :)

~~~~~

I have to admit that my goal of increasing exercise has not come to fruition.  Even yoga hasn't happened, although much of that is because things keep popping up on Wednesdays.  I am telling myself that as the days get longer and warmer, I will be more inclined to exercise outdoors (I already know I hate indoor stuff).

~~~~~
The rest of my time has been spent on something terribly exciting: remodeling the house!  When we moved in about 15 years ago, there were several things we wanted to change.  We then switched into more of the crisis reaction--replacing things as they broke and had to be fixed.  Now that we're in more of a normal routine (that is, two incomes, healthy :)), we started to look at some things we could do to fix up the house.  Fortuitously, interest rates are crazy low now, so we're refinancing and taking out money to re-do a bunch of stuff all at once.  I'm blogging about it (very simply--mostly just photos) at http://unpinkening.blogspot.com.

~~~~~
Other than that, we've been having lots of fun.  Cara was home all January and then came back last weekend to see Travis in the HS production of Grease!  It's my favorite musical and it's a FABULOUS production.  I've gone four times.

This week Mira starts practice for the Middle School Musical--Shrek.  I love our school district and all that they do.

And it's March.  That's almost Spring, right?  

Major life changes--and some fear

I realize it's been almost a month since I last posted.  Partially it's because there's not been much cancer-wise to post about. Partially it's been because I've been so busy that I haven't actually had time to sit and write a post.  But mostly it's been because I haven't so desperately needed to blog lately.  I began this blog to give myself something to do during my (at the time) upcoming recovery, and to help myself remember my journey.  But it became a sanity-saver and a mood-booster, as I (selfishly) watched the numbers on Blogger's Stats page.  My highest count was 314 on one post.  314 of you read something I wrote (or a few of you read it many, many times...).  I doubt that anything I ever have written (publications?) or will write professionally will be read by that many people.  That's a huge bump to my ego.  :)  However, I haven't needed to see those numbers as much, as I'm re-entering, and slipping back into a less me-focused place.  As I have been going through treatment, I've found myself very self-centric.  I liken it somewhat to both the toddler and the teenage years, where it's difficult for the kid (or me!) to look at life through anyone else's lens but their own.  I realize that it's at least partially necessary, as healing takes so damn much energy!  But as I've regained energy, I've been more easily able to shift the focus from me-first.  That excites me.

So as an update, I'll start with the cancer stuff, following my appointment with Dr. Shah yesterday.

My weight is still up a little bit.  Admittedly, I haven't been trying too hard to eat healthy (busy life = quick food and too many carbs), and I'm not running much, although I have a FitBit now and that does make me work hard to get in at least 10K steps a day.

My labs are fine:
Hemoglobin 11.3 gm/dL
White Blood Cells 4.2 thou/mcL
Platelets 72 thou/mcL

I'm glad that I'm mostly maintaining my hemoglobin with only one iron tab a day, and that my platelets are hanging in there.

I had my second "Herceptin-only" infusion yesterday.  I'll have these every three weeks until April 13 (if I did the math correctly).  I didn't write after my last Herceptin infusion, because it didn't go all that well.  I mentioned earlier how I am taking part in a Phase II Clinical Trial for NeuVax ("the breast cancer vaccine").  I had my first inoculations (4 of them) last visit, and will have the same four given each of these first six Herceptin-only infusions.  After the first ones, which hurt like hell, by the way, I came home and crawled into bed, shivering horribly, with body aches, a fever, and generally feeling like I had the flu.  The injection sites had knots under them, were red and swollen, and itched like crazy for over a week.  As I was lying in bed that night, miserable, I started to look up more information about the NeuVax trials--which was a stupid idea in that state!  I did find something that said low platelets could be a reason to exclude a patient from the clinical trial, as could an autoimmune disease.  So that freaked me out a bit.  I then struggled mightily about what to do with my participation in this clinical trial.  I have, from the start, been absolutely sure that I wanted to do this, half-joking that I owed it to all the mice I sacrificed in the name of science for my doctoral research.  But now I was starting to have doubts--especially after reading the sensational posts about NeuVax and how it was doomed to fail, and actually increased the risk of breast cancer returning (ahem. I *teach* how to know a website that gives reliable health information from an unreliable one, and I was still being sucked in).

Anyway, I did call the Clinical Trial team and voiced my concerns.  They immediately contacted the lead PI on the trial and reassured me that I was still eligible (the platelet thing was in combination with other risk factors, but they will still watch my levels closely, and ITP is not an autoimmune disease that they were concerned about).  Furthermore, now that this trial had been going on awhile at different sites (did I mention that I was the first one enrolled in the trial at my site? First for the nurses to give the injections?), they had some tips to ease the side effects.  I also convinced myself (whether correctly or not) that if I had such severe reactions to the injections, I must SURELY be getting the real thing (I'm blinded to whether I'm getting drug or control).  So I took Tylenol before this round, and have kept up my levels since then.  The injections weren't so painful this time (nurse had more practice), and while I hit a wall of exhaustion last night, it wasn't as bad as the first time, and I didn't have the other flu-like symptoms.  Best of all, I'm helping out Science and Cancer Research in a way that not just anyone can do.  Take that, Pinktober!!!

Since I'm doing so well--almost no signs left post-radiation other than a bit of a tan around my right breast area--that meant that yesterday I got the all-clear to start the next phase of my treatment: hormone blocking.  My particular tumors were estrogen and progesterone receptor positive, so I need to take adjuvant therapy (pills) to block the hormone production. The big choices are Tamoxifen or an aromatase inhibitor (most common is Arimadex).  Most of the estrogen in the body is produced by the ovaries, and Tamoxifen blocks its production. Aromatase inhibitors only block hormone production by fat tissues.  As you can imagine, a drug that only acts on one type of tissue (fat tissue) would be expected to have fewer, less-serious side effects.  And that's the case.  So if your ovaries are no longer producing estrogen, aromatase inhibitors are for you.  However, if you're pre-menopausal, you need the bigger guns that act on your ovaries.

I'm not (yet) post-menopausal.  I've been lucky enough to be going through chemically-induced menopause most of this year, but I'm not clinically there yet.  So I get to at least start with Tamoxifen.  The plan is, if I've still not had a period in the next two years, to switch to an aromatase inhibitor at that point.  Recommendations are continually being revised as to the amount of time it is best to stay on hormone blockers.  Standard of care currently says five years, but there are multiple studies now looking at ten.  Who knows what they'll recommend in five years from now.

For some reason, the Tamoxifen is causing me much more fear than the other treatments I've had.  Maybe because I knew the others had a relatively short timeframe?  Maybe because I had no time to think about the other treatments without having to just DO them?  But mostly, I think, I'm afraid because this is supposed to be the "easiest" of the four (surgery, chemo, radiation, hormone therapy), and while I wouldn't call the other three pleasant, they haven't been as bad as I expected.  And now I'm afraid this will be even worse than I fear.  The side-effects scare me:  blood clots, uterine cancer, cataracts, intense menopausal symptoms, weight gain, depression, trouble sleeping, vision changes.  Maybe I'll be pleasantly surprised by how easy hormone therapy is, too.  If only I could convince my brain of that!

~~~~~

There are a few major changes in my family, too.  One of the biggies is that my mom, who has lived next door to me for the last 7 1/2 years, is moving back Up North.  It's really her story to tell, so I won't elaborate much on it, but I know she is looking forward to seeing all her Hurley-area friends, and especially living close to Steve and Amy.  And I realize it's time.  I had her here for the majority of my kids' growing-up time.  She came down when Mira was  in Kindergarten, Travis finishing Elementary School, and Cara finishing Middle School.  She gave my kids a chance to have a grandparent be part of their everyday (every day!) lives, and she made it possible for me to go back to school and to earn my grad degree.  But now my brother should have a turn.  :)


~~~~~
The other big news is that next month I will have a new job.  Not only will it be a full-time job (my first since 1997), but it will be a job in my field--the one I went to school for 5 1/2 years for.  Starting November 6th, I will be a Public Health Manager at the North Shore Health Department, which services seven suburbs in Milwaukee County.  I am beyond excited to start, while at the same time being sad to leave Zilber--especially all my co-workers (past and present).  I am lucky that I am able to continue to be Adjunct Faculty at Zilber, and will continue to teach PH101 this semester, and possibly other classes or give guest lectures in the future.  To be honest, I'm a little afraid to be leaving that cocoon, too.  I've been part of the School of Public Health for over 6 years.  But--again--I think it's time to do something else.

~~~~~
Besides all that, life continues to be very good.  Mira had a great season with the Middle School Cross Country team and got second in her age group at the Panther Prowl today, running a 24:30 5K.

 Travis is getting ready to apply to colleges, and is enjoying his Senior Year.  This week was his last homecoming, and he's at the dance right now.

I assume my posts here will continue to be less frequent, but it's been really nice to write again, so I certainly won't stop entirely.  I'm also looking forward, with my new job, to have normal hours and therefore evenings and weekends off!  I've loved re-connecting with many of you, and hope we can continue.  I'll be crazy-busy between now and the end of the year, working 125% (full-time job plus 25% appointment teaching), getting Mom's house ready to put on the market, and all the other things that come with life.  But come that first week in January, I fully plan to celebrate my first year Cancerversary.  :)  It's giving me something to really look forward to.

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.

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.

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.

Decemberists!

On November 19th, before even discovering the lump in my breast, I ordered tickets to see The Decemberists in concert.  My friends Margaret and Tim introduced me to The Decemberists, and they became the soundtrack by which I wrote my prelims for my doctoral degree.  Since that time, I patiently waited until they toured and came to Milwaukee, so I was beyond excited when they released a new album and began a new tour, with a Milwaukee stop.  

I knew I'd be in the midst of chemo when the concert arrived, and was afraid I wouldn't be able to attend.  The concert became somewhat of a symbol of me continuing on with my life and not letting cancer interrupt it too much.  Therefore, when I caught a cold this last weekend, I was very worried that it would screw up my plans.

Luckily, this was an off-week for chemo, and so I stayed home all day Wednesday, napping and keeping hydrated.  My temperature stayed in the 99's all day and I got a reluctant go-ahead from the nurse to drug myself up and attend.  Thanks to Dayquil and a Mountain Dew Kickstart, I was off!

We had a fun dinner at Cubanita's, and then the concert.  Opening act Alvvays was pretty good, and The Decemberists were AWESOME!

They played a lot from the new album (which I like), although not all the songs I would have liked to hear.  And they did a great job dipping back into the older stuff. "The Crane Wife 3" and "The Island" were really good, but I think my favorite section was what they called the dark section of the concert where they played "The Wanting Comes in Waves," "Repaid," and "The Rake's Song" from "The Hazards of Love."

It was completely worth drugging myself up.  :)

~~~~~

Thursday was a bit rough.  I woke up with a fever again, so worked from home in the morning to make sure things didn't get any worse.  I did make it in for the afternoon, although that's when my cough appeared, too.  

Thursday night was truly awful, but my fever broke overnight and I think I can safely say (fingers crossed) that this is now just a cold.  I actually sound much worse, as my voice is laryngitis-y and I'm coughing a lot, but I feel much much better.  Best of all, no fever!

~~~~~

And better yet, Cara is home for her spring break.  She came home with a cold, too, but after some good sleep, she's on the mend, too.  Yesterday was her 20th birthday, and I spend time alternating between wondering where the last 20 years went, and not being able to imagine my life before she was in it.  We have lots of plans for this week while she's home.