Return of the Roller Coaster

Over three years ago, when I was first diagnosed, I wrote a post about feeling like I was on a roller coaster. My friend Katie gave me that visual, along with the permission to throw my hands up and scream some of the time. Well, I have felt like I've been on a roller coaster more than I'd like these last few years. Sometimes there's a long stretch of easy, winding track, but then the steep inclines and the gut plunging dips come along.

Last week was my routine 6 month check-up.  It's really nice to not have such frequent visits, except that I now usually have a huge list of questions for Dr. Shah. This was no exception.

My lab results were good. 
Platelets holding at 88K
Everything else in the normal range

Unfortunately, I've gained 7 pounds in the last 6 months. I kind of knew this, but it was still depressing to see in my chart. I've been more active this winter than in any winter I can remember, but not as active as I'd been the previous 6 months. I think I need a workout buddy. I'm hoping that volunteering with Team Phoenix 2018 will get me back into a better routine. (I wonder if I can get a copy of this year's plan and follow along on my own to build back up to that awesome strong place that I was last year...)

I'm nearing the two year mark on aromatase inhibitors (first Arimidex, now Femara), so I will need a bone density scan before my next appointment in 6 months. (The aromatase inhibitors decrease estrogen, which frequently results in loss of bone density.) 

While Dr. Shah was examining me, I mentioned that I'd had some trouble swallowing on occasion (usually when I'm drinking water and I kind of choke on it) and that I felt like my neck was a little swollen. She felt my neck and then looked at it, and said, "Oh. And the swelling is uneven." I said that I felt a lump lower, too, on my left clavicle. She said, "let's order an ultrasound to make sure nothing is going on."

And here's where the roller coaster takes off.

My brain thinks all of the following, in this order:

• How nice that Dr. Shah senses my concern and is ordering an ultrasound to put my mind at ease.
• She must have an inkling that something is wrong, or else she wouldn't have ordered the ultrasound.
• (I'm just going to google what a swelling in the neck/throat after cancer could be.)
• Oh yeah, my thyroid is in that area. Thyroid issues cause weight gain, tiredness, numbness or tingling in the hands, hair loss. I have all those things. That might explain why I have all those things.
• Huh. Research shows that there is an increased chance of thyroid cancer if you've had breast cancer.
• Oh. My. God. I have thyroid cancer. I KNEW IT! I can't go through cancer treatment again. I just can't.
• OK, a secondary cancer is actually better than metastasis of the original cancer. There's better outcomes, as long as the secondary cancer isn't Stage IV. I can do this.

Of course my insurance plan has just added a new program called, "CancerCARE," and touted as "helping prevent you from receiving inappropriate or delayed care." Their oncology nurses review every treatment plan so you get "the best care." What it really means is that now every cancer-related treatment must get additional approval from their oncology nurses before the patient is allowed to receive it. So I didn't get the ultrasound for almost a week. Plenty of time for all those crazy thoughts to percolate.

Then I'm in the ultrasound and the tech looks at my thyroid and tells me it looks great. At least 50% of people have benign nodules in their thyroid--usually lots. I have one tiny one. (No thyroid cancer! But then what explains my exhaustion and weight gain?)

She then moves to the left clavicle and it takes awhile to get a good image of the bump on it. It is not, as Dr. Shah thought, just that my clavicles are uneven. It is actually a lymph node that is located in front of my clavicle, and it's somewhat enlarged. A lymph node can be enlarged for any number of reasons, so this is just a wait and watch situation. But at least nothing to worry about now. 

The last thing Dr. Shah had discussed at my appointment last week was something I'd asked her about at my last two appointments: using a bisphosphonate (Zometa or others) to prevent osteoporosis and bone metastasis. The Femara that I am taking (as with any aromatase inhibitor) is known to have a relatively frequent side-effect of osteoporosis. One of the ways to counteract osteoporosis is with use of a bisphosphonate, which acts by inhibiting osteoclasts (which break down bone) and allowing osteoblasts (which build bone) to work more effectively. Research showed that when women were on bisphosponates for bone loss, they had a decreased chance of bone mets developing. As with all research, a single study doesn't prove anything, but three studies back in 2011 gave at least some support to starting bisphosphonates even before bone loss occurs. I'm not sure if Zometa has made it into standard of care, but Dr. Shah actually was the one who brought it up this time. It is an infusion (i.e.: given by IV) that you get every six months for five years. Side effects include a few days of flu-like symptoms, and possibility of osteonecrosis of the jaw, which is much more scary.

And this brings me to even more frustration with CancerCARE. Normally, I'd have left the exam room after my check-up and walked to the infusion bay, gotten my Zometa, and not had time to worry about it. Instead I was not able to get approved and then administered the Zometa for 9 days. 

In the end, it all went well. Greg saw how worried I was (I get PTSD when I have to sit in the chemo bay), and went in late to work so he could make sure all was going well. I got an AWESOME nurse who took her time to find the best possible vein, and got my IV in on the first try. I have had the flu-like symptoms (achy, chilled, tired), but that improves when I take a Tylenol and an Advil. And I don't have to do this again for six months! 

And so I'm back to that nice, cushy straight-away on the track, where it's good to be outside, feeling alive. Where I vow to do my best to appreciate all the good in my life--including my current good health. Where I think that this may actually be the time where I stop worrying about every little thing being a return of cancer. 


For the record, I've never liked roller coasters...

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.

Surgery #3

I realize it's been quite awhile since my last post. Over two months, in fact--by far the longest I've gone since starting this blog. That, in itself, is a sign of how far I've come. :)

I went two months between visits with Dr. Shah (And it'll be 3 months before I see her again. More baby steps.). My repeat hormone tests solidified the fact that I'm in menopause, so I've switched from tamoxifen to Arimidex. So far, so good, though it's only been 11 days. :)  The reason for the switch is better severe potential side effects (tamoxifen --> endometrial cancer; Arimidex only--> osteoporosis), although anecdotally I've heard that the more-likely side effects are much worse with Arimidex (bone aches). What I've noticed so far is that I'm having very different hot flashes. On tamoxifen, I'd turn beet red and my heart would race. With Arimidex I just start sweating like crazy. (Oh, joy--and if you see me and go to hug me, you might want to remember that tidbit ;))

I also had my first booster shots for the clinical trial (which will be every 6 months for 2 years).  They take blood at each appointment, too.  So I got to make good use of my port.  As my friend Katie says, I ran into a vampire.

I'm psyching myself up for my third breast surgery. (If you want to re-live the others, my double mastectomy with ancillary lymph node dissection on 1/8/15 is chronicled here, and my surgical debridement and re-suturing on 2//15 here.)  This third surgery removes my expanders and replaces them with my permanent gel implants.   I decided 18 months ago to go with shaped silicone implants (called "gummy bears"), so that determined the type of expander I got.  If you want to see the difference between the implants I'm getting, regular silicone,  and saline, here's a photo:

I know I posted about it before, but the expanders that I have look like this.

They're uncomfortable not only because I can feel the metal valve used to add saline, but also due to their size.  I feel them under my arms, and they make things like bike riding difficult. 

Therefore this is the surgery I'd been looking forward to for over a year.  However, now that it's here, I'm a bit nervous.  I keep telling myself that I did just fine with a much more invasive, longer surgery and that this is just cosmetic.  But it's still surgery and as I read over my blog posts (and my private journal) from the first surgery, I may have forgotten just how rough it was!  I'm mostly afraid that I'll exacerbate my TMJ, which has gotten so much better after 6 months of wearing splints.  I don't want to un-do that!  

I'm expected to need two weeks to recover.  I'm hoping it won't take that long, but I've stocked up on reading material (our first 3 book club books now that we've re-formed):

And picked a knitting project:

I'm hoping I'll be up to visiting, and be able to resume walking quickly.

At any rate, all of you have been so wonderful with all the other crap I've had to go through. If you have a chance, send me some positive, successful-surgery-without-needing-a-platelet-transfusion thoughts on Tuesday.  Surgery is scheduled to begin at 7:30 am and last 4 hours.  Greg has said he'll post updates on Facebook.

~~~~~

Other good stuff is happening.  I have enough real hair to have something done with it, so I did--got it highlighted and cut and then we had family photos taken, including some fun ones:

Travis turned 18 and graduated from high school. The time goes so fast.  I still wonder how this baby:

Became this accomplished man:

And finally, our remodeling project is done!  Photos (before and after) are on unpinkening.blogspot.com.  

~~~~~

Happy summer, everyone.  Here's to speedy healing so we can still get some Festivals, Bier Garten visits, and beach trips in.

Herceptin (check)

Today I had my final (fingers crossed) Herceptin.  The last time I will be looking out these huge windows while having (life saving) poison pumped into me (fingers crossed).

Trusty infusion pump

Greg and I went out for breakfast and then he came to my appointment with Dr. Shah.

Almost last port access before it's gone

And then I had enough time to finish (and bind off) my bright pink shrug that I started so many months ago, also in the infusion chair.

It definitely needs blocking!

So a bit of catch-up since last time I posted (March 5th):

My MUGA scan came back at a good level.  The MUGA checks if the heart's ventricles are pumping at a correct level.  It's measured in percentages, and a score of 50% or higher is considered normal.  My score this time around was 61%.  The other scores, were 62% (pre-chemo), 56% (post-chemo, but mid-Herceptin), and 68% post-post chemo and mid-Herceptin.  Dr. Shah won't continue to monitor my heart, as she's very pleased with my numbers.

I had an appointment with my new GYN (my former one retired and I hadn't seen one for almost two years--which was when I was diagnosed with Endometriosis and put on birth control pills (which still make me wonder if that kicked my ER+ tumor into high gear, but I digress).  My GYN looked at my hormone levels and was pretty convinced that I am in menopause.  She supports the switch from Tamoxifen to Aromatase Inhibitors, but respects Dr. Shah's desire to re-test before switching me.  I don't have to be watched any more closely by the GYN due to the increased risk of endometrial cancer (unless I have symptoms), so that was nice to know.  Trying to decrease those visits any way I can--current count is 129 appointments related to my breast cancer diagnosis.

I met with my plastic surgeon and got the OK for my final (reconstruction) surgery.  It's scheduled for June 28th at 7:30 am.  It should last about 4 hours, then I'll be in recovery for about 2 hours and be able to go home (hooray!).  I will have surgical drains again (ugh!), but only two this time.  And I'm supposed to take 2 weeks off of work.  When pressured, Dr. Sterkin said maybe I could return earlier, but not until the drains are gone.  I have only (this month) earned sick leave at the rate of one day a month, and I've been withdrawing time for doctor appointments already, so I'm still a little down about having to use vacation time to sit home recovering from surgery.  Adding insult to injury, my surgery is scheduled for the day before Summerfest begins, so my plan to "do Summerfest" is dashed.  <whine, whine, whine>  On the other hand, the cool things about my surgery include not only getting rid of the uncomfortable saline-filled expanders, but also getting rid of my port-a-cath, and having my new breasts "rounded out" with fat lipo-suctioned from my belly!  (silver linings...)  I did check with Dr. Shah today, and while there is a (debatable) risk with procedures done to the arm after lymph nodes are removed, that doesn't apply to the chest.  What does that mean?  I'm clear to get tattoos after my reconstruction!

I spent a lot of time today talking to Dr. Shah about next steps.  In cancer circles, they call this phase "Survivorship."  It's common to experience changes physically, socially and emotionally.  It's common to fall into a depression of sorts when active treatment stops. Given my history of depression, I'm acutely aware of this possibility.  I definitely know that there is a chance of recurrence.  I am trying to decrease my fears of recurrence, and part of that was talking to Dr. Shah about what to do if it does come back.  My follow-up with her will begin in 2 months, including bloodwork and a clinical breast exam.  If all looks good, my appointments will gradually spread out (3 months, 4 months, 6 months...).  My greatest fear has centered around the fact that my tumors were highly Her2+.  That indicates an aggressive tumor with high chance of recurrence.  But if it does come back, I could go back on Herceptin (which I tolerated well), and there are other therapies that are being developed, targeted at Her2+ cancers.  Dr. Shah shared that she has one patient who's on her third year of Herceptin, post recurrence.  So there are options.

When I first sat down with Dr. Shah to discuss my treatment options back in February of 2015, she shared statistics with me about how likely it is to remain alive and cancer-free, depending on which treatments you chose (given my particular characteristics).  I remember barely listening at the time and just being determined to do everything possible to fight, even if it only increased my chances of survival a few percentage points.  I found that chart this last weekend, and then went to the website where (I think) she got the data from.  It's called Cancermath.net.  Now that I've already survived beyond that time of decisions, my numbers have improved!  :)  So for those who like stats, here's my survival curve, using the specifics of my tumor and the treatments I've done:

I like stats, and those are pretty good odds of survival for many years, in my opinion.  It cuts my remaining time approximately in half, but as I remember distinctly getting my diagnosis and not knowing if I had even a year left, these numbers are actually quite comforting.  I am planning to refer to them when I have my inevitable dip into fears of recurrence.

It was kind of sad to say goodbye to the nurses, MAs, and receptionists today.  I know I'll see some of them on and off for many years yet, but I don't plan to sit in the infusion chairs in the chemo bay for a long time (if ever again).  Today, for the first time in all my chemo/infusion appointments, a patient sitting next to me was ill--vomiting throughout his treatment.  It filled me with an overwhelming desire to bolt, but it also made me realize how truly fortunate I have been.  I have had so many visits and treatments and things done to me, and I have had side effects, and likely will always have some of them that remain.  But in the scheme of things, my treatments have been very well tolerated.  My side effects are annoying, and they linger (I'm talking to you, damn neuropathy!), but I've made it through the active treatments and I feel unbelievably lucky.  I've put up with things I never thought I'd be able to do (like a 45 minute MRI), and I've learned a lot.  I've learned about cancer, immunity, the nervous system, heart function, and hormones--and I've learned that I have the most amazing family and friends in the world.  Thank you all for reading, writing, texting, and hugging me.  I could not have done it without you.

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?  

Routines and complaints

I started this post on Tuesday, when I was in a particularly cranky mood.  But I didn't hit "post" and some things have improved since then, so that's good.  :)  Updates included in italics.

I haven't written much because there hasn't been a lot to write about!  My life has fallen into a pretty nice routine.  I work full-time.  I do fun stuff many evenings and weekends.  I sleep--hard!

I did a spot check and I'm up to 112 appointments related to the breast cancer.  Yikes.  I'm also essentially done with the clinical trial.  I will have 4 boosters 6 months apart, and the big test is on February 3rd.  That's when they do the DTH to see if my body has developed an immune response to the vaccinations I've been getting (if they're real vaccines or the control).  If my immunology skills/memory is correct, I'm hoping for a response (red swelling) of 10 cm or greater.  

I've had a lot of people ask me how I'm feeling, and it's kind of a strange answer.  It's pretty obvious that the acute part of my treatment is over.  Even though I'm still doing Herceptin every 3 weeks, other than the vision issues the first week or so, it doesn't impact my life that much.  I'm taking the Tamoxifen and (knock wood loudly) it doesn't affect me much either.  However, I've crossed over into the land of long-term side effects.  There are numerous articles on the internet about such side effects (here's one), but they certainly are about as varied as are the short-term side effects of cancer treatments.  Some that have been particularly annoying follow.

*I developed TMJ problems last year. My dentist thinks it's at least partially due to my being anesthetized (and intubated) so long.  I've ground my teeth most of my life, but I didn't have this kind of jaw pain until last spring.  I had gotten to the point where I couldn't open my mouth wide enough to eat a sandwich or even a banana.  So I have a TMJ splint now.  I think it's too early to know whether it's fixing the TMJ, but it certainly has given me a lot of other annoyances.  Much like having braces, it makes my teeth ache and it has cut up my tongue and cheeks.  Besides that, I have this wonderful lisp since I have a big chunk of plastic in my mouth all the time.  Yes, it's an all-the-time splint and not just a night one.  It's hard to eat with it in.  I'm hopeful that it'll help me lose weight at least.  :) (Update: at my 10 day check, my dentist trimmed back the splint and it's a lot less annoying now.  I can tell there's significantly less pain in my jaw and I'm able to open it wider.  My lisp is lessened--though not gone--and I can eat a lot more foods with it in.)

*The radiation oncologist said I could continue to see "tissue changes" for several months after radiation was done.  The plastic surgeon said the same, which is why I won't get my permanent breasts until May or so.  I didn't believe them.  But about a month ago, my right side got really tight, my range of motion decreased, and I felt kind of bruised on my right side ribcage.  It's gotten gradually worse and my right arm is numb a lot of the time.  I've got a call in to the OT to have her measure me.  I hate to even say the dreaded word, but I fear it might be lymphedema.   Hoping it's just those "tissue changes."  (Update: I have an appointment with Audrey the OT on Monday morning.  She will measure me for lymphedema, and work on some lymphatic drainage and stretching.)

*I am still experiencing peripheral neuropathy, which is decidedly worse in the cold.  While the rest of my body is hot-flashing, my feet are always freezing.  And numb.  (Update: issues continue, but the temps are starting to climb back up and I'm hoping to get more walking and/or running in, in hopes that I can decrease the neuropathy that way.  I also went to yoga--once--and am trying to get myself to do that more regularly.  If anyone wants to do the simplest yoga with me on Wednesday nights at 7:30 at CORE El Centro, let me know.  My doctor said having an exercise buddy makes it tougher to back out!)

*I'm tired. I kept telling myself it was because of the chemo or the radiation or the fact that I was working two jobs or working more-than-fulltime or taking care of family.  But here I am, working one plain, ordinary 40 hour a week job.  No more chemo or radiation.  My mom's moved and the kids are pretty self-sufficient.  And I'm still tired.  Really, really, really tired.  Not chemo-so-tired-I-might-cry, but tired.  (See above about yoga--the idea of heading out into the cold at 7:30 when I'm so tired is NOT appealing.)

*Chemo brain is real.  And it's scary.  I've always had a fabulous memory for people, places, recipes, you-name-it.  And I can't remember entire conversations now.  Names?  Not a chance.  I am writing notes to myself everywhere, and sometimes I read those notes and if they weren't in my handwriting, I'd swear I'd never heard what they say.  It's embarrassing.  And it's frustrating.  The one thing I do promise myself is that I will not be upset if someone reminds me of something that I have said or done (or promised to do) and have forgotten.  So if you're reading this and I've forgotten something related to you, please let me know.  It's frustrating and embarrassing, but would be much worse if I weren't reminded.


OK, with all that complaining out of the way, I have to say that I'm still happier than I was my last year in Grad School.  :)

I've been enjoying what wonderful big people my kids have become.  Having Cara home this month has been great and I'll miss her so much when she heads back to the Twin Cities next week.

Cara & I working at Starbucks while Mira attends Girls Who Code

Travis has had a very busy month with finishing the semester, taking finals, writing college application essays, working at Culver's, and practicing for the HS musical (Grease).  He also earned an "A" in his very college course (3rd Semester Calculus).  

Mira is a completely delightful teenager (so far).  She seems to be not-hating the rest of her family as much as of late, and in addition to all her school activities, she's continuing with Girls Who Code at Marquette University and just started taking voice lessons.  And she's selling Girl Scout cookies, too, if anyone doesn't have another source.

All three kids have been great about playing games with Greg and I and we love learning more about them through that outlet.  I don't think I've laughed as much in this last month as I did the entire year before!  December and January have been a wonderful gift.

As I was cleaning out some clutter in my room, I came across the journal that my friend Magda gave me after my surgery.  I used the paper journal to write down things that I didn't really see the need to blog about.  It was the rawer version of my recovery.  And in reading it over, I can see how far I really have come in this last year.  It's easy to think that the acute part of my recovery was easier when it's behind me and the chronic stuff is here now, but reading my journal reminds me just how much easier the "now" is.  I'm glad I have that reminder (especially with how crappy my chemo-brain memory is!  LOL).

Tamoxifen, take two

Though I am not a fan of snow, it's kind of nice to be "snowed in" today with the whole family.  Mira was up early and made pancakes from scratch for us all.  I had eggnog in my coffee this morning, deciding to embrace the snow instead of despise it, and I'll spend much of the day correcting papers, reviewing a book chapter and planning the rest of my semester of teaching.

This week I had another Herceptin infusion and #4 of 6 immunizations in my clinical trial.  Nothing new to report there--same immunization-related reaction (chills, low grade fever, exhaustion) on the day after my appointment.  Same itchiness and redness at the site of the intra-dermal injections.  It's been three months since my last one, so I get another MUGA scan of my heart, too.

At my appointment with Dr. Shah this week we discussed the Tamoxifen situation.  She *really* wants me on it (or another estrogen blocker) and does NOT want to put me on Lupron (which is a GnRH agonist resulting in blocking estrogen production), which would be necessary to try aromatase inhibitors (Arimidex).  She doesn't want to do Lupron because the side effects are similar to those I've been having with Tamoxifen, and then if you add in another med (Arimidex) and its potential side effects, you're kind of asking for trouble.  However, she did say that she would consider switching me over after one year (previously said two years).  I told her I could put up with the pain for a year, but she suggested we try something else instead.  So I'm on a half dose of Tamoxifen now to see if the side effects come back.  The plan is that if they don't (fingers crossed), then she will titrate me up to a full dose--possibly split between evening and morning--and maybe I'll tolerate it better that way.  

I've also started a low dose of Effexor (an antidepressant used off-label to combat hot flashes) in hopes that I won't be woken up so many times in the middle of the night due to the hot flashes.  I'm not sure if they've gotten worse since adding the Tamoxifen, or if it's worse with the temperatures dropping (so I'm constantly veering between boiling and freezing), but I thought I'd try to see if I could get some relief.  I should know within a week if it's working.

~~~~~

In other news, I've been at my new job two weeks now.  I love it!  Almost everything about it is completely new--including all the terminology and acronyms--and my brain is getting quite a workout, but it's really, really cool!  I'm ridiculously giddy every time I get a physical reminder of how I'm now part of the team (got my business cards, my name got added to the phone system, I ordered tops with the health department logo on them, got my ID picture taken). I work in a village hall (in one of the 7 communities covered by the health department) and it reminds me so much of my mom's work environment at the Iron County courthouse.  Everything about it--from the police department being housed right there (but behind locked door--they even have the good soda vending machine) to the break room--makes me smile to think how my life's changed since then.  It gives me a nice sense of comfort to have the familiar in the midst of all the new.

~~~~~

I'm looking forward to seeing Cara this week for Thanksgiving.  The stretch from August to Thanksgiving is always so long.  I get Thursday and Friday off of work, so we will do some Black Friday shopping.  And we'll be having turkey with Greg's family for the first time in several years, and that will be fun.  

~~~~~

Mom's house is ready to be listed.  The realtor will be coming to take photos tomorrow and it should go on MLS on Monday.  It looks awesome.  I'll be sure to post the link on Facebook when it's released.  My brother came down last weekend to help move the rest of Mom's things up North (including her motorized recliner).  Although he drove down, loaded up, and turned right around to head home, it was nice to see him, however briefly.

Tamoxifen

Time is just flying by.  Since my last post, Mom made her move Up North (email/message me if you want her phone number and/or address), I have almost finished my part-time job at Zilber (which was bumped up to full-time for a few weeks, but that's a different story), and I started on Tamoxifen.

One of these things did NOT go as well as hoped.  :)

I really cannot complain too much, as it's not like the Tamoxifen is making me house-bound.  But it's pretty yucky just the same.  All my joints ache, but especially my hips.  By the end of the day, it hurts to walk (so you know what's happened to my exercise plan and my great ambitions using the FitBit). And it's upsetting my stomach, too.

This week at my meeting with Dr. Shah, I told her about all the yucky stuff I was feeling, and she said that my symptoms didn't sound like typical Tamoxifen side effects, so the first thing we had to do was figure out whether they were being caused by the Tamoxifen or something else.  (She thinks it might be the Herceptin or the clinical trial meds.)  That means I'm off the Tamoxifen for three weeks to see if the side effects disappear.  So far my stomach upset has stopped (yay!) and I'm not as achy, but that might be because I've been using Advil and Tylenol to counteract the effects of the clinical trial (typical vaccine-related, immune response symptoms).  We shall see...

I'm not quite sure what will happen if it is the Tamoxifen.  Standard of care is switching from 5 to 10 years on it, so while I could tough it out and put up with the ickies through either the clinical trial (9 more weeks) or Herceptin (6 more months), I'm not sure I could handle it for ten years.  Guess we'll see what the next three weeks hold.

~~~~~
Mom's move went very well and she's settled in and, other than missing her recliner, very happy in her new digs.  She's had visits from many friends that she hadn't seen in years, and is thrilled to be closer to my brother.  I'm much relieved that everything went so well, and also occupied readying her house to go on the market next month (anyone want to buy a ready-to-move-in home in an awesome school district with FABULOUS neighbors?  ;)

~~~~~
And my last week of work at Zilber is crazy, but fun, too.  I decided to stay on to get through the travel stuff for the recruitment job, and that means that from today to next Thursday night, I have events non-stop, including an overnight trip to Delavan, a 3-day trip to Chicago, topped off with the UWM Grad School Fair next Thursday night.  Then I start my new job Friday morning.  Of course, I'm still teaching, too.  And I'm tired (very tired), but I'm not exhausted.  In June, when I could barely keep my eyes open enough to work one 8 hour shift, I never thought I'd be able to work full-time (plus) again.  It feels good!  Now if I could just shake the body aches... 

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.