Which week?

Have been quite busy the last several weeks.  I have been trying to get closer to full-time hours at work, and have been going to the breast cancer spinning class I mentioned earlier.  Lots of photography stuff.  And constantly feeling the ever growing mop on top of my head!

Still some minor lingering side effects, such as unwelcome acid reflux, little cuts around my fingers and nails, some dizziness (still can't figure out the cause of it), and hot flashes.  Nonetheless, feeling progressively better than before.

With chemo and radiation done, my new way of viewing time is structured around in which week my herceptin appointment is:  Is it this week, last week, or next week?  After thinking about this carefully, I concluded those are the only three options.  Until the end of May, each week will either be a "herceptin this week," "herceptin last week," or a "herceptin next week" kinda week.

Right now it is a herceptin next week kinda week.

Otherwise, finishing packing to head up to NY to see lots of family over the next few days, and hopefully not to get snowed in up there.

"Miniscule"

I had my once-every-three-week herceptin appointment on thursday and asked Dr. McG about my likelihood of recurrence... I wanted to know what my percentage was.  Her response was:  "miniscule."  She told me the odds of the breast cancer recurring, or a new one developing - due to the herceptin and the tamoxifen - were miniscule.  That was certainly music to my ears.

Have been really tired the last few weeks, but also really busy.  More photo classes, breast cancer spinning classes, hiking, and, oh yeah work.

Speaking of work, my firm had its holiday party on Friday.  My hair was a big hit!

Although I am not sure what is going on with the diagonal bald line on the back of my head.

My hair looks just like my co-worker, Gary's.

(I note that this has transformed from a cancer blog, to, at times, a weather blog, and now to a hair blog.  What's next, I wonder.)

30 RADS: RADS done!...what next?

Wow, it feels like weeks since my last post.  Just six days.

Wednesday was my last radiation appointment.  My last treatment was filled with treats.  Chocolate ruggelach for my radiation techs who put up with me for nearly two months.  And the special surprise they had for me was the graduation march - played twice!  Ended on a very positive, upbeat note.  

So, what's next?

I continue every three weeks on the herceptin until 18 infusions, towards the end of May.

At the beginning of January, I start a five-year stint of tamoxifen.  Just starting to learn about that.

Follow-ups:  in addition to seeing my oncologist every three weeks in conjunction with my herceptin infusions, my radiation oncologist said she wants me to see her and my surgeon, alternating every three months, for the next two years.  My surgeon, Dr. Cocilovo, is leaving georgetown at the end of the year so if I want to stay with her, need to go to the Inova Breast Institute in Fairfax.  Which I expect I will do.  Mammogram in six months.

So, for now, need to learn all that I can about what I can do to help reduce my risk of recurrence.  Dr. Croog (radiation doc) says:  exercise, no drinking more than 1 serving of alcohol in a day, baby aspirin.  Dr. McGrail (oncologist) says Vitamin D and lose weight and maintain a healthy weight.

And in the meantime, getting back in the swing of full time work, hiking, more photography, running, and .... well, not sure.  Oh - and updating the blog periodically.

29 RADS Done: letting the hair out of the hat

That's right, with just one radiation treatment to go, I report to you now that i have let my hair out of my hat finally at work, the one place where I was holding out.  It is coming in quite nicely, except that it is gray.  According to the mayo clinic:  "When your hair starts to grow back, it will probably be slightly different from the hair you lost. But the difference is usually temporary. Your new hair might have a different texture or color. It might be curlier than it was before, or it could be gray until the cells that control the pigment in your hair begin functioning again."

So, i have chemo gray.

Which looks pretty much like squirrel gray.  

Nonetheless, it is hair.  And it is happy to have been let out of the hat.

Flashback: Surgery

I started this blog a week or so before chemo started.  And I've flashed back to the beginning of April.  One more piece needs to be filled in:  surgery.

On April 8, I had my surgery:  a lumpectomy plus sentinel node dissection/biopsy.  I had two pre-operative procedures before surgery:  

First, was the wire localization procedure.  

Second was the radioactive dye injection in preparation for the sentinel node dissection.

I had read up on these procedures on breast cancer bulletin boards (I do NOT recommend doing this -- these boards can put the fear of God in you needlessly).  And many women had pain with the dye injection but most did not mention pain with the wire localization.   So, naturally, I was terrified of the injection but not the other.

When I first got to the hospital I was given a warm robe and valium.  I was escorted around by someone whose job it is to escort you around.  

Off to the wire localization where I was not permitted to bring my mom in with me.  It was a small, stuffy, hot room, and the procedure felt like someone had placed a coat hanger in me and was yanking it around.  Which essentially is what it was, except it the coat hanger was a thin wire and I'm hoping sterilized.  I very nearly passed out.

Then, on to the nuclear medicine department for the dye injection and lymphoscintigraphy.  The night before I had put my numbing patch on the left nipple.  The doctor came in and he looked to be about 16 years old.  I inquired if he had ever done this procedure before.  He assured me he had.  In fact, he did a very good job of it.  Each time he injected the dye (several spots around the nipple) there was a few seconds of burning pain and then the pain subsided.  Definitely not as painful as the wire placement.

Finally, back to the surgical area where my nightmare began.  In my pre-surgery meeting with the doctor, I had expressed fear about three things:  the gas mask, waking up with a tube in my throat, and feeling nauseous from the anesthesia.   The very short story is that my IV broke off, and rather than communicate this to me, and allow me to decide whether to go through the trouble and pain of having a second IV put in, the anesthesiologist unilaterally decided to put me out through the gas mask instead.  I was fighting with the person who tried to put the mask on, and they had several people holding me down.  I remember the anesthesiologist, rather than explaining to me what was going on, lying to me and telling me it was just oxygen.  It was horrible, and I woke up (at least with no tube in my throat) but nauseous and still smelling the sweet gas that they used to put me out.

It took several hours for me to get home, probably another hour to make it up the stairs, and several days to start feeling normal again and stop smelling that smell.  But, made it to a local park four days later to see the Virginia bluebells.  Whew.

27 RADS done: THREE go to

Only THREE radiation treatments left to go.  Started having a few side effects - for several days I was having what felt to me like "pinging" sharp pains, and what apparently are more commonly known as "zingers."   Had a few dizzy spells last sunday and monday - this may or may not be related to the radiation, but it is a side effect that some women experience.  Some skin irritation.  And am feeling a little tired.

But otherwise, not much else in the way of side effects.

Had a very nice thanksgiving feast yesterday and am looking forward to a very restful weekend.

24 RADS done: Goodbye tube top, hello mountain top!

Thursday I had my last radiation treatment of the whole breast.  The technicians let me keep the tube top made of white mesh as a souvenir ("I went to radiation for four weeks, and all I got was this lousy tube top...").  Here's a photo of my tube top waiting to be bound to my chest in my very own personalized styrofoam cup.

Atop sugarloaf mountain

Friday I had my first radiation treatment of just the lumpectomy site (my "booster").  So thankful that my shoulder (now officially diagnosed as a frozen shoulder) does not need to be raised above my head in this new position.  Friday, and for the final six treatments, I lie on my side, almost falling off the table, with my left arm above my head, and underneath the blissfully warm sheets that the sibley radiation techs provide.

And even more that I am continuing to feel physically better.  Went hiking yesterday!  Here's an update on my hair progress:

at base of sugarloaf mountain

19 RADS done: holy hair!

Nearly two thirds done with radiations.  Tomorrow is number 20.  On Thursday I have my last full treatment; after that it is just the "booster" to the lumpectomy site.  This means a change of position so my shoulder can start to recover.  Whew!  

The previous hair picture I posted was from November 4.  It is unbelievable to see the difference that just over a week has made.

November 12 self portrait

November 13

November 13, afternoon at arboretum

 Maybe soon it will look like THIS:

(lawyerly disclaimer....this is a copyrighted image which is why I am not including it here!)  

I continue to feel much better from the chemo and am keeping busy with walks and photography, including a photoshop class at the smithsonian.   

17 RADS done: support group junkie?

I think I must be a support group addict given that, after leaving my 17th radiation treatment not five hours earlier, I dragged my ass back out to Sibley hospital, through rush hour traffic, just so I could check out a new support group.  Further evidence:  it turns out I knew two of the five women there from other supportive breast cancer environments.  Having all kinds of weird emotions approaching the end of this phase of my treatment, I guess I was just looking for a support group fix.

In other news, my shoulder pain is apparently due to bursitis and my hair is slowly making its way back onto my head.  Below is a picture from last week.  As well as one from a visit to the national cathedral the other weekend that has nothing to do with anything really other than I think it's pretty.

15 RADS done: Halfway there!

This morning I had radiation # 15 of 30.  The skin is getting redder, but not really painful as I had anticipated (knocking on wood now).  One of the radiation techs said to me this morning that my breast looked like it was angry at them.  While my breast is not angry, my shoulder is.  That is, my right shoulder, which is becoming increasingly painful as what was a preexisting minor issue with my shoulder is morphing into a major issue because of the uncomfortable position my shoulder is forced into each day.  Tomorrow I see an orthopedic doc for that problem.

But I am loving my new schedule.  Although I didn't exercise this morning (oops), I hope to most mornings before radiation.

And speaking of exercise, over the weekend, completed a 5-K race with my friend Lisa who ran, while I ran-walked.  I decided to try a 1-minute run, 2-minute walk cycle.  Finished 134 out of 135, at 48 minutes and 28 seconds.  Pretty good for my third run since chemo!  Eager to find another one to try with longer running intervals soon.

The biggest irritation at the moment is dealing with all of the ongoing insurance and medical billing problems and mistakes.  I am trying to be grateful that all of the bigger problems, like having cancer, or feeling moderately nauseous or extremely fatigued all day, are behind me so I can focus on the less important ones.  Not easy, but trying.

13 RADS done...taking better care of myself

The schedule of radiation at 9 a.m., plus additional doctor appts. (trying to fit in physical therapy for my shoulder, which has been hurting), not to mention vet visits and car problems, and then trying to rush to work, was leaving me exhausted and not exercising much.  So, I was finally able to get my radiation schedule changed ... my new daily appointment is at 11:30 a.m.  Hooray!!

AND, I told my office that for the remainder of November, I would only be at work from 12:30 ish on each day.  WHEW!!!

My first day of the new schedule was yesterday, and it felt SO much better.  Yesterday, I was able to get in a run-walk (still mostly walking) before my appointment, and tomorrow a.m. I hope to make it to a breast cancer fitness support group at a nearby gym (free spinning, stretching and abs class for breast cancer survivors, taught by a breast cancer survivor!).

Since that class is from 8 a.m. to 9 a.m., need to head off to bed now.

9, 8, 7... counting down

9 radiation treatments done (21 to go).

8 herceptin infusions done (10 to go).  Had herceptin infusion number 8 on Thursday; these continue, with little if any side effects, every 3 weeks until I've completed number 18.

7 (and a half) months since my diagnosis, and the last time I ran.  That is, until yesterday!  Echocardiogram came back normal, and cleared by Dr. M for any physical activity.  Did a 30 minute slow run-walk yesterday (mostly walking so far).

6 (and a half) months since surgery.  6 rounds of chemo completed.  6 months until I'll be done with the herceptin infusions.  Next weekend, on November 6, I'll be walking (with a little running thrown in) a...

5K!  Looking for one to run (with a little walking thrown in) in December or January.  It's been 5 months since my first chemo.  Thank God that's over.

4 more weeks until I am done with radiation.

3-week cycles for herceptin to continue until done.

2 great yoga classes for me to choose from on Sunday afternoon or Wednesday evening, to help get me through the stiffness my body is feeling, especially my shoulder, exacerbated by my positioning in radiation.

And...

1 normal mammogram result from earlier this month.  Holding on to that one for dear life!

6 RADs down, 24 to go: the routine

Whew, I am exhausted from running around from home to hospital to work to other appointments, and back again.  But, it is less stressful now that I am getting used to the routine.  Which is....

Leave home by 8:30 a.m. (thankfully my regular appointment time was moved from 8:15 a.m. to 8:45, and then to 9:00).  Park in the special lot using my parking lot magnetic card.  Then, use my patient ID key card to check in at Sibley (there's a bar code which gets read by a machine).  Head to the dressing room where I  put on my dressing gown (open to the back) and on top of that my robe (open to the front).  Since patients being radiated can't use deodorant, it's a bit stinky in the changing room.

Then, on to the waiting area.  Usually my technicians call me within a few minutes, although the other day they were delayed about 20 minutes.  They bring me back to the special room with my very own linear accelerator.  But first I must give then secret password (no, not "open sesame;"  my birthdate).  They always have pleasant music playing in there.  But it is f-r-e-e-z-i-n-g.  I disrobe and they put a very tight white mesh "tube top" on me, which holds the left breast in place for zapping, and keeps the right one out of the way so it doesn't get zapped.

Next, I hop onto my table.  I lay on my back, and my arms are above my head in stirrups (all designed to immobilize me).  My favorite part of the morning comes next - the technician brings me warm sheets to cover me, since it really is COLD in that room.  They spent ten minutes or so positioning me.  And I do my practice breathing.  First, my cleansing breath.  Then, when the technician tells me, I take a deep breath in (I count slowly to seven) and then hold, with my ribs high up, designed to keep the heart out of range of the radiation.  We usually do that 3-4 times.

Finally, the technicians leave the room (they don't want to be zapped of course) and speak to me over an intercom while they watch me via a video camera.  When directed, I take my cleansing breath, and tell them when I am ready.  Then, deep breath in, hold (about 20 seconds), and zap.... invisible radiation waves aimed at any potential stray cancer cells.   The radiation comes from the circular device which moves around me, kind of like a dental xray machine.  I get nuked from two different directions - the first is above me (maybe a foot) and about a 45 degree angle to the right.  The second is slightly below me and 90 degrees to my left.  Each zap is about 15-20 seconds.  A special sound and red light go off while the radiation is being emitted from the machine.

After, the machine and table move back into starting position, and I can bring my arms down.  We remove my mesh tube top, back on with the robes, change, and leave.  I'm done by 9:30 - 9:45 ish.

Here's a photo of my room:

Once a week, on Tuesdays, they take xrays to track progress, and I also meet with my dr. who assures me that all is going according to plan (at least that's what she told me yesterday).

My skin is already turning red and I'm getting stiff and swollen.  But at least it's not chemo.

1 down, 29 to go

This morning met with Dr. Croog and she showed me the treatment plan (there is a whole big black binder all about me, including some very unflattering photos of me lying on the treatment table during simulation).  She told me that the treatment plan avoids the heart, and while the radiation will hit the lungs, the degree to which it will is less than average.  There is a small risk that I will develop radiation pneumonitis.

So - the plan is 30 treatments over six weeks.  The first 23 will be a larger area, and the last 7 targeted at the lumpectomy site.  My appointment time will usually be 8:45 a.m.  Although today's appointment took an hour, they usually will be quicker.  Most of the time is spent situating me on the treatment table, having me practice my breath-holding.  The zapping part is really only a minute or so.  We'll see how tomorrow goes...

Radiation Stress

Given my level of stress this week, you wouldn't know that I received good news three times recently (BRCA negative; clean mammogram; and negative biopsy).

But it was a stressful week.  Most of it radiation stress.  My radiation was supposed to begin last week but was postponed because of the biopsy I had last Thursday.  Then, it was supposed to begin this past Thursday.  There were scheduling issues that are too tedious to describe.  The short version is that despite three phone calls to confirm, my calendar still differed from Sibley's (the hospital where my radiation will be).

In any event, on Wednesday, I had my "dry run" and they took X-rays.  I was in a prone position (on my stomach) because that was supposed to best protect my heart and lungs from receiving radiation.  But it was quite uncomfortable and the doctor decided that this position wouldn't work for me.  She explained that it is very important to be able to maintain the position and because my shoulder, neck and jaw were cramping up, it was not a good idea to try to use this position.  I was freaked out because I thought the prone position was what would protect my heart and lungs.

So, I had to redo the simulation on my back (the traditional radiation position for breast cancer) and do a special breath holding technique.  I will hold my breath as they direct me at certain times which will help bring the heart out of the radiation's path.   The new dry run and X-rays will be on Monday, and I will start for real on Tuesday.  I spoke with my radiation oncologist on Friday afternoon (she returned my call - I love a doctor who returns calls!) and she assured me that the treatment plan will have the radiation avoiding my heart and lungs, so I am much calmer now than I was earlier in the week.

Also on Monday I will have an echocardiogram to evaluate my heart's functioning to see if there has been any adverse effect so far from the herceptin, which can cause heart damage.

As I write this, it doesn't sound all that stressful.  Nonetheless, I was a bit of a basket case this week.  Luckily, the week is now over and I am looking forward to a relaxing weekend.

Getting back to normal & vacation pics

It's now been four weeks and four days since the last chemo.  Still some lingering side effects (acid reflux, periodic sore throat, nails breaking, eyebrows have gone missing, tingly and slightly numb toes on one foot (maybe a baby case of neuropathy), still get out-of-breath walking up a flight of stairs).  But on the other hand, I can drink water again!  And I don't have a major case of "the ick" (aka Days 5-12)!

Had a good weekend.  Over ten miles of walking, including several miles in rock creek park on saturday and several miles sunday joining a friend for the last few miles of the Komen 3-day breast cancer walk ... 60 miles in three days... go Jenn!

Especially loved the decorated motorcycles and the parade of the survivors' circle at the end.

GOOD NEWS ALERT.... got the results of thursday's biopsy.  All fine and negative.  No inflammatory breast cancer, just redness from accumulation of fluid, as doctors suspected.

Because of the biopsy, radiation's postponed until thursday.

And finally, vacation photos.  It started out foggy and rainy on Skyline Drive in Shenandoah National Park and I engaged in much "couch potato" nature photography from the dryness of the car.

Explored Luray Caverns and learned about stalactites and stalagmites.

Onto Chincoteague and Assateague.  A beautiful sunset on the beach followed by a day of pounding rain, and then, finally, shortly before heading home...

...spotted the famous wild ponies.  More pictures uploaded here, where uploading is much quicker.

Just Herceptin

Back from vacation last night.  Had a really nice - albeit, rainy - time.  Will post pics later.

Today, back to the chemo room for my once-every-three-week herceptin infusion.  Supposedly herceptin will not have any of the chemo side effects.   Herceptin, as you may recall, is the antibody to help fight my Her2 positive oncogene... read more about it here.  This will continue for the next eight months.

Am postponing radiation until next week so Dr. C can check me out first on thursday and, if need be, do a biopsy.  May not be needed because redness is much less.  We'll see.

Round 6, Day 21: DONE!

No Round 7 tomorrow!!!!

Phase 1 - Cut (surgery) - Done!

Phase 2 - Poison (chemotherapy) - Done!

Phase 3 - Burn (radiation) - to start next week.

But first - vacation!  Leave in an hour.

Round 6, Day 19: slowly getting there

Sunday's horoscope:  "What you want to accomplish by the end of the day and what you actually have time for are two very different things.  You'll strike a happy medium, though, and ultimately will be proud of your productivity."  So true!  I worked from home putting in a full day's work on a big document with an upcoming deadline.  Indeed, very proud of my progress, despite the fact that much still remained undone yesterday.

Although it is slow, and up and down, I do believe progress is being made toward feeling like a human being again.  Last night I finally had a first glimmer of excitement along the lines of:  "this is my good weekend, yet I don't need to start feeling anxious about being slammed with another chemo treatment on thursday."  Yet, for whatever reason, woke up nauseous and anxious this morning.  Go figure.  Am exhausted, but after one more hectic day at work, vacation for five days!  

About the redness in my left (swollen) breast - on recommendation from Dr. C at Georgetown, have been to see a physical therapist at Sibley twice for manual lymphatic drainage.  It's just a very light massage designed to get the lymphatic fluids moving away from the area of edema and towards other areas.  It actually seems to be working - the redness seems to be decreasing.  A cautious whew!

Round 6, Day 15: Grateful for the end of summer...

Notwithstanding the fact that it was 93 degrees today, thereby tying the Washington (Dulles) record for hottest temperature for September 23, I am grateful that the autumnal equinox is officially here.  DC's summer officially sucked (that is, if you don't enjoy the heat while having chemo).

This round, days 5 and 6 weren't as bad as the previous round, but days 7-13 were definitely worse than prior rounds.  My stomach was upset until yesterday.  But it is finally starting to feel better.

It's been a busy week.  Tuesday, I went in for a baseline post-chemo mammogram.  Thankfully, it came out normal.  I still have some redness and swelling, though.  Even though the doctor believes it is just accumulation of fluid, if it doesn't clear up in a few weeks, I will need a biopsy :-(

Today, went in for my radiation planning session.  I will be having radiation at Sibley hospital in DC starting in 2 weeks (or 3, if I have a biopsy).  It will be every day (M-F, because cancer takes a break on the weekends) for six weeks.  The sessions are relatively short.  Main side effects likely to be discomfort similar to a sunburn and potential fatigue.

And work has been busy.  Off to finish editing a document that needs to get out to the clients tomorrow.

Round 6, Day 10: No known mutation!

Two weeks ago I met with a genetic counselor and had my blood drawn to determine if I had a genetic mutation that would predispose me to future breast cancers (and ovarian cancer, among others), known as BRCA1  and BRCA2.

The testing is all about the numbers.  The genetic counselor explained to me that 5-10% of breast and ovarian cancers are hereditary; the BRCA1 and BRCA2 mutations account for 30-50% of hereditary breast cancers.  Because of my specific set of factors:  (i) breast cancer at an early age (i.e., before 50); (ii) second degree relative with breast cancer at an early age (grandmother); an (iii) being Ashkenazi Jewish, the model said there was a 17.5% chance I would test positive for one of these mutations.  If positive, there would be a 50-65% chance of developing a second breast cancer, and 10-50% chance of developing ovarian cancer.

Needless to say, this caused ..... ("wait for it.......") ....... anxiety.   So the last several weeks, have been dreading what happens if I were to find out that despite having just gone through all that I've been through, I might have over a 50% chance of developing breast cancer all over again and having to go through this all over again.  Ugh.

Thursday morning I found out that my test came back and "no known mutation was found."  NEGATIVE!!  Serious sigh of relief!!

This doesn't mean I won't develop a recurrence or new breast cancer or ovarian cancer, but it means I don't have the known BRCA mutations that carry the higher risk factors.  I was told my risk for a second breast cancer is still increased based on my personal history (0.5-1% per  year, up to 10-20% over lifetime) but risk of ovarian cancer is the same as the general population, 1-2%.

Other than that, have been spending the last few days trying to convince my stomach to stop bothering me.  The stomach pain has not been as bad this time around, but the general feeling of ickiness has been.  Here's hoping it will listen soon.  (I mean that literally... last night I downloaded a meditation/guided imagery specifically geared to irritable bowel syndrome.  My stomach and I will listen to it shortly before we attempt to go to sleep.)

Round 6, Day 6: tired!

Not much to report since yesterday.  Especially since I've spent the vast majority of that time napping, or sleeping or something inbetween.  Meant to post the pictures from round 5 ... my many looks:


Me as a blond...

My funky banged black hair look (with scarf that I snagged):

and just the plain ol' short black hair look

Round 6, Day 5: Last Day 5!!

I am now officially a chemo graduate -- got my applause on thursday led by nurse Karen!  Here I am being unplugged.  Of course, I get to come back every three weeks to complete a year for my Herceptin infusion, but that is not supposed to have the side effects of chemo.

Mom and Susie brought me mini cupcakes to celebrate.  And I came home to a treat - surprise backdoor decorations (thanks Suzie!).

Friday my usual routine - neulasta shot and reflexology appointment.  My hip joints have been hurting somewhat this time, a potential side effect of the shot.

Saturday a walk with Bessie - the hair's coming back quick!  Sunday actually ventured out in the morning to Adams Morgan day for a bit.  Today - acupuncture.  Other than that, lots of US Open and lots of napping.  SOOOOOOOOO relieved that this is the last one!!!

Round 5, Day 21: emotional roller coaster...almost there

I went through my version of the stages of grief today, starting with extreme anxiety this morning, overwhelming depression late morning to early afternoon, serious anger (got into a really pissy mood) late afternoon to early evening, to just back to normal late evening.  I guess that would be acceptance.  Now I am wired.  That's the steroid.

I am trying to be excited about number 6, but it's hard to get excited when I have so much dread about the next few weeks.  But I will get there eventually, and in the meantime, will live vicariously through my friends and family who all are excited for me.

Round 5, Day 17: taking it easy

My red blood cell counts were low the last two treatments, and as a result, I'm slightly anemic which is making my heart beat way faster than it normally does and is making me tired.  And, of course, fatigue is a major side effect of chemo anyway.  So, have been trying to take it easy this past week.

Thus, worked from home more than usual over the last week and a half.  Low key visit with dad & stepmom this weekend.  Short walk this morning.  Longer walk planned tomorrow with a friend.   Trying to gather as much strength as possible to cope with Treatment No. 6 (aka the LAST TREATMENT!) scheduled for thursday.

And am enjoying the spectacular weather!

Round 5, Day 14: September's here!

Ah, yes, it is September, but with temps in the mid-90s, have to say it doesn't feel like it.  Weekend forecast looks good though.  Sometimes I wonder if this is a breast cancer blog or a weather blog.

Slowly feeling better from round 5.  Stomach is much improved.  My throat, which was hurting quite a bit over the last few days, is feeling better.  Still having difficulty drinking enough but discovered that orange juice doesn't taste disgusting (water still does).

Still somewhat exhausted, so worked from home today.  Then, off to the gym for 35 minutes on treadmill and then support group at Georgetown.

Looking forward to long weekend with much cooler temperatures -- much walking in store for me.

Round 5, Day 10: my morning walk

Knocking on wood, I am hoping that I am now over the worst of Round 5.  Picked up my new prescription last night for stomach pain and am hoping that I won't need to take it because the list of potential side effects looks almost as bad as the stomach pain itself.  Stomach is still off, but not as bad as it was on Thursday.  My mouth still tastes like a toxic waste dump, but I am starting to be able to drink a little more which is good because I was getting seriously dehydrated.


Went for a walk this morning and brought my camera along...here are a few pics from my morning walk around the 'hood.

Finally made it back to work yesterday.  It is definitely a good distraction.   Hoping to achieve that ever-difficult-to-achieve balance of busy and rest this weekend.

Round 5, Day 8: Aack

My stomach continues to be the punching bag for Round 5.  Have had major stomach pain for the last 24 hours.  Worked at home today for a few hours (reclining on the couch).  If not better by morning, will go on quest for more medicine to help combat this.  Seriously, the end of chemo cannot come soon enough.

Round 5, Day 6: just passing time

Round 5 is plodding along.  I think I might be getting better at Day 5 and Day 6.  Just got back from a very, very slow walk.  And went on a very short walk yesterday evening.

Although I had another meltdown (it was #5 in 3 days, at the chemo room), some good came of it.  I scored some extra Ativan -- wonder anxiety/anti-nausea pill.  But more importantly, the woman who was being treated a few chairs down from me told me she was glad I had cried in the chemo room....it made her realize it wasn't just she who felt like that sometimes.  And her chemo companion then offered to get me some food.  Very kind.  I then went onto put on a fashion show, trying on all kinds of wigs and scarves and hats that other chemo patients had donated.  Several people got really into it and I had all kinds of admirers and supporters.  Snagged a free scarf, hat and extra wig too.

Back to the couch for now.  Pics later.

Round 4, Day 21: And then there are the bad days....

Today I feel like whining a bit, so stop reading if you don't want to read whiny, not-so-upbeat Phyllis.

* * * warning, whining ahead * * *

 I am sooooo sick and tired of this process.   I am seriously dreading Round 5.  My anxiety level has been through the roof the last few days.  I think the heightened anxiety may be due in large part to impending genetic testing which I will undergo in a few weeks to find out if I  have the BRCA gene mutation which will make it super likely that I will experience a recurrence some day and be more susceptible to ovarian cancer, among others, and likely need more surgeries.

And I think I am just suffering battle fatigue.  My stomach has suffered throughout this process.  Stomach pain, IBS, acid reflux (that woke up me at 3:30 last night, it was awesome), mild to moderate nausea that continues well past a week after treatment.  Drinking almost anything tastes disgusting for about 2 weeks.  My throat and ear continue to hurt a bit.  The redness on my left breast has not completely gone away and that adds to my stress, although Dr. C thinks it's likely just edema and not anything of major concern.  And I am tired.  Despite feeling mildly nauseous for the better part of a week each cycle, I have still managed to gain three pounds or so, topping the scale at my highest weight ever.  I am tired of not having hair on my head.  My eyebrows are now coming out.  I am basically missing half of each eyebrow.  I guess the eyelashes are next.  And did I mention I am tired?  I have been having trouble getting to sleep at night over the last few weeks.  What is really frustrating is that as so-so as I feel right now, this is the best I am going to feel physically over the next three weeks.  This is as good as it gets until October.  So, I have had four crying bouts in the last 24 hours including one of those crying-in-the-bathroom-at-work afternoons where I dab my eyes with a cold paper towel and pretend that nobody will notice. Actually, I don't think anyone did notice.  The taxotere causes my eyes to tear up so, I guess that's the silver lining of that side effect -- no one pays much mind to my red teary eyes.

* * * ok, whining done * * *

Mom is my babysitter this time around.  She's bringing the entire series of Freaks & Geeks.  It will help me get through these next seven days.  And despite my anxiety and self pity and whininess, I know I will get through this.  September will come (Dad and Heidi to visit in a few weeks), as will October (grand tour of VA three weeks after last chemo).  Lots of fall hiking awaits me.  Much to look forward to.

Round 4, Day 18: Counting

I am v-e-r-y slowly counting to six, and I am almost at five.  I am feeling much recovered from Round 4 now, and in six weeks, I hope to be feeling much recovered from Round 6!

Several weeks ago, I met with a radiation oncologist to learn about my next phase of treatment.  Am going for a second opinion consultation tomorrow just to confirm recommendation.  Generally speaking, it will be six weeks of treatments, five days a week (M-F, because the cancer cells rest on the weekend).  And it will start 4-6 weeks after chemo is done, so around mid-October.

Thus will start a new phase of counting.

Speaking of October, it was pointed out to me, and then I noticed, that there may be some early signs of fall.  Here's one right down my block... just counting the days until then!! 

Round 4, Day 12: What day is it?

In about an hour it will be 8-9-10, 11:12 (and 13 seconds).  (Math geek at heart, I think that's really cool.)  But I only knew what date it was this morning by checking with my computer.  Lately I find I have no idea what day or date it is.  But I usually know what day in my treatment cycle it is.

My "middle weekend" (days 9, 10, 11) of round 4 was not such a good one side effects wise.  My stomach was seriously off and on saturday, I had a pretty bad bout of nausea while at, of all places, the massage therapist.  Took my first compazine (the extra pill for break-through nausea), since I'd already taken zofran that morning.  It did knock out the nausea, as well as me -- I was a very groggy zombie for hours after.

Yoga on Sunday (at Circle Yoga) was nice.  The women there all wanted to know how I'd been doing and I was greeted with a hug.  It's like a support group but with stretching and yoga poses.

Implementing my resolution to take better care of myself physically, I decided to work from home today.  Slept in past 9 a.m., and stopped working around 4:30.  Acupuncture and then 2 miles on the treadmill at the gym.   And off to bed for lotsa sleep.

Flashback: surgical consults

After my birthday and MRI, the next few weeks were filled with stressful surgical consultations.  March 16, I met with Teresa Harrington & Dr. Cocilovo at Georgetown.  I can't imagine more patient and compassionate medical professionals.  I learned, thankfully, that the MRI did not reveal anything in the other breast or give reason to believe that the lymph nodes were affected.  Basically, I learned all about the plan of attack -- surgery, which due to the small size of my tumor, could be a lumpectomy, followed by chemotherapy (because of my Her2-neu positive status, regardless of the earliness of the stage), radiation, and hormonal therapy.  I learned about staging, the importance of obtaining clear margins.  I learned that medically a lumpectomy + radiation is supposed to be equivalent to a mastectomy.   I learned about sentinel node biopsy, a relatively new procedure (in the last 10 years, I think), which can help avoid surgical removal of a larger number of lymph nodes if the initial nodes are negative.

I made an appointment for a second opinion with a very well regarded breast surgeon.  Suffice it to say that gathering all of my films correctly, getting to the right place at the right time and getting through this appointment managed to make a stressful few weeks even more stressful.  BUT -- I got what I came for.  Dr. #2 confirmed everything that Dr. C had said, and even pointed out to me how small my tumor was, and that the radiologist at Georgetown did a really good job of even picking it up at all.

Meanwhile, focused on trying to find things to relieve the anxiety... meditation, walking, hiking.  A few notable distractions were the Peeps diorama show at the Washington Post (I did become obsessed with peeps for a while there), an outing to hear local girl band, the Sweater Set, a concert at the Czech embassy, and Passover dinner at a friend's house to round out the month of March.

Round 4, Day 6: Not much to report

Reporting that there is not much to report.  Friday, saturday and sunday mornings went for short walks in the morning.  The weather was blissfully not 100 degrees this weekend.  The weekend went by relatively quickly with a visit from my brother, and additional visits from friends ($100,000 pyramid, anyone?).  Pete took very good care of me and handed me back off to friends today.

Have been taking the zofran proactively this time around for a longer period of time to try to prevent the queasiness.  I think that the extra week off, although not something I wanted, has made this round not as bad as it otherwise could have been.  I'm very tired, but time is passing.  In about a week or so, I will really feel 2/3 done.

Round 4, Day 1: Good to go

Round 4, Day 1 at the chemo room was uneventful.  Dr. M is on vacation, so met with her senior, well-regarded, less chatty partner, Dr. Smith.  He said I didn't look infected -- so all good to go with the chemo.  Back on track for every three weeks for treatment #s 5 & 6.  So far just super tired.  I actually, unbeknownst to me, fell asleep on the chemo chair until my brother kicked me to stop the chemo snore.

Now we're just hanging at home watching tv.

How full is the glass?

The glass feels half full, in that I've made it this far - halfway through chemo.  But it also feels half empty - now I have to repeat the last 10 weeks.

Working from home today amidst  a few errands and appointments (kitties got their long over due annual check-up today).  Looking forward to visit from brother and while not actually looking forward to chemo, looking forward to knocking out another one and filling the glass up a bit more.

thank goodness

thank goodness for summer storms, which have the power to cool temperatures from 98 to 75 -- sunday's storm gave me the opportunity to go walking outside for 45 minutes.

thank goodness for antibiotics (and sports bras) -- dr. c said my infection looks like it's clearing up and i just have an accumulation of fluid now.  should be good to go for chemo on thurs.

and thank goodness for day 27 -- feeling so much better than the last few weeks -- gives me something to look forward to in october.

Maybe I just need more support...

That is, of the left breast (i.e., lumpectomy breast).  Saw Dr. C at Georgetown today.  She said the redness maybe looks a tiny bit better.  She thinks what is likely going on is that some fluid has built up and gotten infected.  In addition to my antibiotic (Keflex), she wants me to wear a very supportive sports bra for compression, just as I did after the surgery.  Will potentially help with the fluid problem.  See her again on Tuesday to see if things are improving.  As long as it does not get worse, I am scheduled to begin Round 4 on Thursday.

And speaking further of support.  This morning I met with a social worker who runs some breast cancer support groups and workshops at Sibley Hospital.  That was helpful and I hope to meet with her again and get tied into her support group networks.  She asked me a very telling question -- have I been able to ask for help from friends and family and tell them what I need.  Asking people for what I need has never been easy for me, and not sure if I've done a good job of it so far.  

I think as I head into phase two of chemo, I need to try to take a little better care of myself physically. When I am exhausted, I need to realize that, duh, resting might help a bit.  I think I will try to have friends over to my place more frequently and go out less -- that way, I can still get the support that has been so helpful from friends and family (and I am very appreciative of all of the support so far!!), while conserving energy.   And I think I am going to try to reduce my work hours a bit.

Putting that last one into practice, did not go into work today.  After my appointments, came home and rested.  Then off to the gym for 35 minutes and 1.81 miles on the treadmill!  (Of course, I had to drive the six blocks to the gym because it feels like the inside of an oven outside.)  And the treadmill walk felt great, so I need to make sure to work that into the schedule.  Exercise helps combat chemo fatigue.

So -- plan of action -- more rest, regular walks, and invites to friends to come play cards, games, watch tv, movies, do crosswords, and hang out.  Etc.  

Not Round 4 yet

Just a quick update.  I have what my doctor (my surgeon, Dr. Cocilovo) believes to be an infection.  Some redness, warmth, and fluid vaguely near where my surgery was.  I feel fine physically (other than tired) but chemo has been delayed by a week.  Much as I was dreading it, it is more frustrating to have it delayed.  It's been an aggravating few days.  Yesterday's visit at georgetown took over three hours.  Much waiting.  And that wasn't even the aggravating part.  That was the four phone calls trying to get Dr. McGrail to call me back.  And my chemo-induced impatience and frustration with having to reschedule everything that's based on my 21-day cycle over the next two months.

Follow-up with Dr. Colilovo at georgetown tomorrow to see if antibiotics are kicking in and helping infection (if that's what it is).

New end date (tentatively):  September 9, with 13-16 days after to feel better.

Round 3, Day 18: Finally

Finally ~ I took a walk again, this morning -- had not walked since Tuesday!

Finally ~ Started feeling really "better" on Friday, Day 16.  Day 13 did not work its magic this time around.

Finally ~ my "halo" came in.  Was supposed to take 2-3 weeks, took five weeks.  A halo, or "fringe," in wig lingo, is where they take hair and sew it to a headband so you can wear it under any hat, scarf, etc.  For some reason, picking up the halo was more traumatic than getting my hair shaved off in the first instance.  I think because I had such high expectations that with the halo on, I would look just like me again.  But I didn't.  The halo is one layer of thin, straight hair.  Not my normal wavy hair.  But after picking it up, had lunch with some friends who thought it looked just fine.  So that was comforting.  Which leads me to...

Finally ~ a lost pet story with a happy ending!  Driving over to my friends' house from the wig shop, I happened to see a small, gray dog on the road, who made his way over to the sidewalk.  I didn't stop because there were cars behind me, and at the moment, I didn't know what I would do with the dog or if I should even be picking up a strange dog while on chemo.  Later that afternoon, my friend emailed me.  A  good samaritan saw the dog, posted his picture on the local community list serve, and he was reunited with his owner!

And speaking of the halo -- after fussing with it and getting it all set up under my hat last night, went to a friend's birthday party.   Which happened to be Vegas themed and came with black hats for all guests to don.  Upon my arrival, an unsuspecting guest immediately told me -- here, remove your hat and put this one on.  But, um, no, I stammered (do I blurt out, "I can't!  My halo is most unflattering without my hat!"???) ... friend AB to the rescue -- "she brought her own hat."  Problem solved!

And finally ~ pinned down a vacation plan for post-chemo!  Will visit some of the best Virginia has to offer ... barrier islands with wild ponies, mountains in the fall and cool caverns.  Yay!  Something to look forward to while undergoing these next and last nine weeks or so of chemo!

Round 3, Day 14: Halfway Hat

Wig stayed home today.  Celebrated halfway with a new hat, which I wore to work today.

Cinders got cozy with free head this morning.

In side effects news:

Eyes have been tearing quite a bit.  That's due to the taxotere.

Really feeling the fatigue - it's hard to get through the work day.  Yesterday, I finally tried out the "relaxation" room.

I was wrong about the hot flashes.  They disappeared as soon as I stopped taking the steroid, and flushing is one of the steroid's side effects.  So, I believe that's what I was experiencing.  How all those athletes can stand it, I don't know.

Stomach is vaguely ok, although I would not say I feel WELL yet.  Water is tasting bad.  Having trouble staying sufficiently hydrated.   Recent enjoyable food items:  pasta, mint ice cream, nutella, strawberry italian ice and marzipan.

Round 3, Day 11: Baldly walking

While my earlier days this round did not seem quite as bad as they did in earlier rounds, my middle days - including my first few days back at work - were much more difficult than in earlier rounds.  Difficult as in, really fatigued, and still queasy.  On Days 8 & 9 took more of my zofran (super nausea-fighting drug) (which, by the way, even though I only pay $20 for it, is marked at retail as over $920!).  Yesterday and today the stomach pain is back.  My entire digestive tract cannot wait until mid-September.

In other, and more pleasant, news, the heat wave broke and yesterday my friend Debbie (visiting from Boston) and I took a 3 mile walk in the evening.  After we walked a few blocks, I decided that my sweaty head really wanted to be exposed to the fresh air, and I finally got over my fear of walking around in public bald!  (that is, bald but for my patchy fuzz, some of which is still left).  Always one to worry about what others think, it actually felt very liberating to walk around without a hat or other head covering, realizing that the general public is not judging me for being without my hairs.

Another nearly 2 1/2 mile walk this morning (where I did cover my head to protect it from the sun) was nice but started to get a little overheated towards the end.  Back to life indoors.

Round 3, Day 7: I wish I were in Cheyenne, WY

Currently 54 degrees there, high of 68 tomorrow.  Instead of 102.

I planned poorly.  Chemotherapy in the midst of a heat wave is not ideal.  Yesterday out of desperation I went for a walk in the local grocery store.   At least I am not having chemotherapy 100 years ago before the invention of air conditioning.

Round 3 has been leaving me really tired, with some stomach issues, but the stomach issues, I believe, are not as bad as they were the last two rounds.  Have been eating small, frequent snacks, which seems to help some.  And taking a probiotic, Align.  Maybe by Round 6, I will have it all figured out.

Will attempt heading back into work tomorrow afternoon.   Now back to the couch.

Round 3, Day 4: July 4

Another long day at the chemo room on Thursday; with the wait at the pharmacy (broken register), all in all, took six hours.  Here's a shot of me receiving my carboplatin...



Friday morning went for a walk with my survivor friend.  After napping, my Day 2 ritual -- went for my neulasta injection to prevent low white blood cell counts, followed by my reflexology appointment for relaxation and help with chemo side effects.

Yesterday went to Kenilworth Aquatic Gardens in the morning for a stroll and photo shoot.  I haven't really taken any pictures since before chemo started, and it was so nice to be outside in a pretty spot.  Pics below.

This morning, my kitty beasties woke me up early as usual, and I took advantage of the cooler temps and went for a mile and a half walk, getting home by 8 a.m.

Side effects have generally been about the same.  The last several days have been really tired.  Right now is the most awake I've been since Wednesday.  For the first time since Tuesday night got a good night's sleep.  Stomach has been off a bit but not horrible.  Managing by eating very small, very frequent snacks (can't even call them meals), and trying to stay hydrated with small sips of whatever liquid doesn't bother me at the moment (usually ginger ale, cold water or seltzer).  The new treat is HOT FLASHES.  Over the last few days, my face periodically starts to flush and gets really really hot.  Another reason why I keep whining about the weather (which is supposed to get up into the 90s and up to 100 over the next several days).   Thank God for air conditioning!

Round 2, Day 21: Looking Good, Feeling Better

Round 2 is coming to a close.  Round 3 starts in less than 12 hours.  Once I pull through the first 10 days or so, will really be halfway done.

Monday I attended a workshop called "Look Good, Feel Better," "a public service program serving cancer patients."

Not to be confused with the book, "Looking Pretty, Feeling Fine - Total Beauty for Teens" (May -- do you remember that one from freshman year? I had it here but may have been overzealous in cleaning out and I think I donated it to Goodwill).

The Look Good, Feel Better Program gives people going through chemotherapy all kinds of tips on coping with the toll that chemotherapy takes on your physical appearance.  The workshop walked us through their 12-step program.  Step 1 -- denial that your hair is falling out.  Step 2 -- anger that not only is your hair falling out but your scalp is dry and itchy and painful.  And so on until Step 12 -- acceptance that eventually even your eyebrows and eyelashes start to fall out too.  Ok.  No, those aren't the steps.  But there really is a booklet with a 12-step makeup guide.  And I got all kinds of swag like lotions, creams, lipsticks, mascara, foundation, blush, concealer, etc. etc. etc.  And instructions on how to use these products, many of which are unfamiliar to me.  A nice treat was that a few of the women from the support group I've been attending were there and they made it that much more fun.

And I am feeling so much better than 10 days ago.  Walked to work today for the first time in weeks and weeks.  It was 68 degrees out when I left this morning!  Yoga tonight and more walking.  Last night went for a walk and then dinner with a friend.  My current self is urging my future self to remember that no matter how bad I feel, Day 13 WILL come and I will feel better again.

Oh - an update on the taste changes.  Desperate for caffeine the other day, I tried Pepsi.  And I'll be damned if that Pepsi didn't taste much better than Coke.  So strange.  Probably because it is sweeter.  My latest craving has been for mint - especially mint ice cream.  Have been having girl scout thin mints, mint oreos, mint aero bars and mint oreo cookies too.

And back to wig for a moment.  Today one of the partners in my firm who I haven't seen in weeks complimented me on my new hair style.  I smiled and said, "thank you."

Round 2, Day 18: A good day & hat pics

     

Yesterday I had a good day.  I walked through Rock Creek Park and the surrounding city streets with a friend for an hour and 45 minutes -- the longest I've walked since before chemo!  After breakfast at Open City, relaxed at home and watched wimbledon, and even watched the USA lose to Ghana in the World Cup.  Then, met another friend for a movie and dinner.  It was the day of a normal, non-cancer girl.

Here are some pics of me and my new hats, both with and without sunglasses (and one with Addie, canine cousin of Lily & Cinders):