Pearl Jr.'s birthday has been scheduled!!

What a day!  My heart is so full from all of the great things that went on today.  First of all, it was my daughters' last day of school.  From left to right, last day of 5th and 4th grade.  And it was a beautiful day to walk to school, which was fortunate because we've had rain and storms alllll week.  So grateful to walk on this last day of elementary school for my now-middle-schooler, just like we did on the first day of kindergarten so many years ago.  We have walked every day that the weather has permitted us to do so!  0.7 miles.  My marvelous neighbor, M, and I are a walking school bus! 

It was school spirit day, so they painted their faces with the school colors.  Thor the dog has excellent school spirit--black fur with orange leash.   

Secondly, when I got back to the house after the walk, my phone started ringing, and for once it wasn't a robo-call!  It was Dr. Deep-Seated Tumor Neurosurgeon, personally calling me to chat about things!  WOW!  I was very impressed that he would take the time to do this.  Usually the nurses call, sometimes the schedulers but usually the nurses make the call, answer my questions, then transfer me to the schedulers.  This was Dr. D-STN  himself!  He called to say that the tumor board agrees that surgical removal of the tumor is my best option at this point.  He confirmed that a little bit of Lloyd will remain in there, and that Dr. Radiation Oncologist has a plan to blast it with a CyberKnife (I don't know anything about this yet, and google is yielding too many answers at this moment so I'll wait until I've had a chance to ask my questions then blog it up).  He also told me a bit more about the surgery:  He'll just make a small incision in my right eyebrow: eyebrow craniotomy is what it's called.  That's it!  So I haven't read this yet, but here's what I think is a reputable a link from Johns Hopkins to information about the eyebrow craniotomy procedure.  I don't plan to read it until after the procedure.  Dr. D-STN said that the main side effects include black eye, possible eye swelling, and possible eyebrow disability for 3 months.  Most patients recover full range of eyebrow mobility by that time, which is heartening because my right eyebrow is the one with enhanced abilities!  It's the one I can raise by itself!  Eyebrow joking aside, guess how long my anticipated hospital stay is....?  You'll never guess.  Two days!  He said I'll be up and walking the SAME DAY, and in the hospital a mere 2 days, (he mostly said two days, but the range he eventually gave was 2-5 days.  He said if my eye swells shut I won't be discharged until it opens.  And I seem to be a super sweller!  So we'll see.  Also, if I experience any of that left-side paralysis business that would extend my stay as well, into some sort of inpatient physical therapy.)  The picture he painted very much put me at ease.  Of course it's a big deal, but this sounds super manageable!!  

I think I'm going to refrain from putting the surgery date on the blog, because everyone wants to be soooo helpful but sometimes we are overwhelmed by the outpouring from Carnation Nation!  My goal by keeping the date private is to allow my kids the space to deal with all of this as they will, with the people they are closest to, without me inadvertently creating a circus while I'm in the hospital.  You can expect that the deed will be done by the close of June, and if you need to know the date you will be communicated the date.  When I come out the other side with my wits about me, one of the first things I'm gonna want to do is blog it up!  Because that's the way I roll. 

In regards to CAR-T, I finally got through the new patient hotline, and someone emailed me instead of calling, which was very nice.  Also, I discussed this CAR-T Her2+ brain metastasis clinical trial opportunity with Dr. Oncologist, and she wasn't too excited about it.  She said that the side effects of CAR-T can be pretty nasty.  I read about them, and I thought that they didn't sound too bad compared to dying of metastatic breast cancer.  BUT her main point is that I don't have cancer anywhere else, just the one brain met, so if we can get it under control with surgery and follow-up radiation, that's still my best option.  Plus, the CAR-T Her2+ trial is phase 1, so that is not very far along.  Phase 1 trials are toxicity trials.  SO, CAR-T Her2+ brain met trial is not on the table for hbomb at this point in time.  And that's fine with me!  The location of the trial is in California at the City of Hope medical center. So that would have been another issue, too.  One less thing to stress about!!

Thirdly, summer vacation #1 will commence very soon, and will occur before Pearl Jr.'s birthday/Lloyd's death day.  We're coming for you, brother!  

Pearl does not exist

So, today's scan confirmed, beyond a doubt, what has been suspected:  my unwelcome brain tumor, named Lloyd, is indeed growing.  It was noticably bigger in the past 6 weeks since the last scan, and if you line up the same cross section from a whole bunch of scans you can see that it is clearly getting bigger over time, since before whole-brain radiation.

We still don't have a firm plan for the next steps.  BUT some things are in motion.

I really don't want to go to Florida for brain surgery.  I think it would be a very inconsiderate choice for my family.  What if I don't wake up?  Or am incapacitated such that I can't return to our Midwestern home for months?  Does the family move to Florida?  That would be terrible.  SO, I had a top secret consultation with my original Dr. Brain Surgeon, to ask him questions about the surgical risks and options now that all non-surgical options have been explored.  Just the spouse and I went, thanks to my amazing MIL for taking the girls for a sleepover and bringing them to school that morning.  Dr. Brain Surgeon is also Prof. Department Chair of Neurosurgery.  He said, I have a guy in my department who is an expert in deep-seated brain tumor surgery.  Can you wait an hour and a half to consult with him when he gets out of surgery?  We said of course!  So, we got some coffee and visited the medical museum while we waited. 

iron lung.  Thank you, polio vaccine, for making this machine museum material!!

Dr. Deep-Seated Tumor Neurosurgeon was awesome!  He apologized for making us wait, and we tried to thank him for working us into his schedule on what was clearly an operating room day for him and not a day in the clinic.  He came to us from a brain surgery, and when we left he was proceeding to another brain surgery!  Bonus was that he had heard of Dr. Florida Neurosurgeon and says that he uses the same technology (BrainPath).  And he was confident that he could remove 90-95% of Lloyd if that is what we decide to do.  One of our questions was if that was enough.  As in, how much time will I have, and what quality of life will I have if I do/don't do surgery?  Because I'm willing to go out with Lloyd gracefully if the risks outweigh the benefits of surgery.  We just aren't sure yet.  The main long-term risk of Lloyd removal include loss of function of the left side of my body, the main short term risk of Lloyd removal is fluid build up in the cavity left by Lloyd's removal.  Dr. D-STN would install a short-term drainage tube should this happen (sounds horrible!!). 

Dr. SRS Expert Radiation Oncologist said that if Dr. Deep-Seated Tumor Neurosurgeon can get out 90-95% of Lloyd, he can give any remaining pieces targeted radiation.  This was very good news!  Because one of the things about surgery is that they can never get all of it, and surgery is usually followed up with some other treatment.  So I was excited that, although I previously understood that the region can't have more radiation, if the region to be targeted is smaller then yes in fact I can have more radiation.  Also, these doctors are going to bring my case to their institution's tumor board on Tuesday to discuss the best course of action with all of the cancer experts at the institution.  So, I'm in really good hands guys.  

Only other thing is that Carnation Nation has struck again!  The sister of one of my dearest friends from grad school, K, emailed me to tell me that a new immunotherapy called CAR-T has just opened a clinical trial for patients with Her2+ brain metastases.  I've tried to call the hotline and get information but just get voicemail.  And I'm too tired to put all of the right links here for you guys to learn about this...I'll get em in my next post.  But suffice it to say that CAR-T involves harvesting some of your body's own immune cells, (specifically T-cells), probably and hopefully from a blood sample, and engineering them to attack the cancer cells in your body.  I SO hope I qualify for the trial!  I'll be my own GMO!!  Thank you so much, A, sister of K, for telling me about this trial!!

   

The last goodbye

With conviction I called my dad last night to cancel our trip to see Dr. Surgical Oncologist today.  The first snowstorm of the season struck yesterday afternoon and evening.  Area schools were delaying morning classes, and so it seemed like the rational choice to avoid the extra driving by rescheduling my appointment with Dr. Surgical Oncologist.  My dad, however, had a different opinion.  He was confident that the roads would be better by morning, and that we'd be fine in his extended-cab, 4-wheel drive Ford F-150.  I deferred to his expertise and driving abilities in favor of keeping the appointment.  

He picked me up just after 8am.  I tossed my snowpants in the cab just in case we had to hike out of a snow-filled ditch.  Once we hit the interstate he disclosed that the southbound traffic had been plugged up earlier, but hopefully it's cleared now?  Between this question and the thick layer of snow beneath the tread, I began to question our decision.  Fortunately my 511 road-condition app revealed that traffic was indeed flowing up ahead and that road conditions were improving by the minute.  Indeed, by the time I closed the app the packed snow had given way to pavement.  I breathed a sigh of relief and settled in for another pleasant drive with my dad.  

Dad has been my chauffeur to all of my distant appointments this entire Cancer year.  He has been gamefully unemployed approximately since my diagnosis, which I selfishly admit has been glorious.  I don't think he's missed a single distant appointment.  He packs snacks for the car ride.  In the exam room, he remembers to ask the questions that I forget to ask.  He asks me things the doctors and I forget to think about.  He thanks the doctors and nurses while I'm still reeling from whatever news has been delivered.  After the appointment, we do lunch, and we've discovered some delicious food.  Sometimes we get a chocolate shake, if it's been that kind of appointment.  Usually we just hit the road.  He makes me laugh.  

It's fitting that just as my Cancer year is winding down, Dad has found a new job.  He starts on Monday.  Congratulations, dad!  I'm glad you have an exciting new job, and I'm so glad that I have fewer appointments, but maybe we can keep the regular lunch dates?  I'm going to miss them.  <3

Today's appointment with Dr. Surgical Oncologist was a simple surgical follow-up.  Everything is still healing well.  I took this opportunity to describe my only concern, which is that when my right arm is at my side I have a sensation that there is something wedged under there.  You know how it is when you wear a shirt with too-small armholes, and the sleeve hikes up and gets bunched in your armpit?  It feels like that, all the time.  This led to my concern, which was not about the sensation itself, but perhaps I was having swelling that was causing the sensation?  She checked me out and determined that I do not have swelling (huzzah!).  She also said that although the surgical team tried to avoid damage to major nerves, microscopic nerves were certainly damaged.  She has had other patients complain of this full-armpit sensation, and she thinks that it's due to damage to these microscopic nerves.  She expects that the sensation will go away with time.  

Then the appointment turned a sad corner.  As long as I stay healthy for the next eight months, this is the last time that I will see Dr. Surgical Oncologist.  She is retiring in October, but now I only need yearly check-ups at the clinic's survivorship center.  I suppose even if she weren't retiring I would probably be graduating to the survivorship clinic and out of her purview since I no longer bear the subjects of her profession--she is a breast surgeon, after all.  Although I am sad to know that I will have to find a new surgeon should the occasion arise, I am truly happy for her at her retirement.  I am grateful to have been her patient and to have benefitted from her expertise.  I hope that she will do everything that she enjoys.  

We parted with a hug, then another hug.  There was so much I wanted to say that I couldn't say any of it.  I thanked myself for sending her a thank-you note in November and I hoped that I had said everything in that.  There's no way to fully convey my sentiments, and yet they can be summarized in eight words or less.  Thank you, Dr. Surgical Oncologist, for my life.                      

Forward

I'm done.  I'm done with the painful, sickening treatments for the second time.  I've fought breast cancer twice, and for the time being I've won.  Again.

I think it will be a few more days before the full magnitude of these statements sink in.  I'm done!!!

The appointment today was perfect.  Dr. Surgical Oncologist snipped my stitches and pulled out my J-P drains.  Whew!  It wasn't quite as ticklish as last time.  I think it was due to the fact that the drains were shorter--she said that she trims the length of the drain tubes based on how many lymph nodes she removes.  Since I only lost two lymph nodes, the drains were relatively short, perhaps about 6-8 inches each.  I had gotten so accustomed to having the drains in that all day I've been having to re-learn how to live without them.  No, I don't have to clutch my elbow to my side and lift slightly to relieve the pressure on the stitches.  No, I don't have to make sure I'm not slamming them in the car door.  No, I don't have to avoid laying on them while I'm sleeping.  Oh!  Sleep!  It will be so sweet tonight!

She also gave me the results of the Tumor Board's discussion.  Based on the favorable pathology results, the consensus is that I do not need radiation for either my lymph nodes or my lungs.  Huzzah!  They do still recommend that I remain on Herceptin + Pertuzumab "indefinitely".  That's fine with me.  I'm so lucky that there is something to help control my disease.

I still have so much recovery ahead of me, but I'm thrilled to know that it won't be undone for awhile.  For the first time in months my recovery will be exclusively forward.  No backward steps due to do further treatments.  Just forward.    

"2319, 2319!"

I'm doing great.  I've worked all three days so far this week, and I have probably 80% range of motion in my left shoulder.  Still pretty sore, but it's coming along.  I'm even learning to ignore the nerve pain.  Forward progress is tangible.

Now here's the crud that I haven't mentioned yet.  Remember last October when the mammogram of the right breast showed calcifications?  Calcifications do not necessarily mean cancer, and the right breast has never shown any increased metabolic activity on Dr. Oncologist's PET or MRI scans.  Dr. Oncologist and I were therefore not concerned at this time.  (Increased metabolic activity would be indicative of cancer, so the negative results by PET and MRI are favorable.)  Well, Dr. Surgeon decided to do another mammogram of the right breast on the morning of my mastectomy.  Although I maintain that mammograms as a rule are not that painful and only last a second, this one was a super bummer because my port is right above the business...ouch!  The calcifications were still there.  Dr. Surgeon, therefore, has decided to biopsy the area with the calcification because I now have a history of breast cancer.  Tomorrow I will see Dr. Surgeon to assess my (Wonder Woman) recovery from the left mastectomy and to plot the biopsy of the right breast that will take place on Monday.

At this point I feel like George from Monsters, Inc.  He's this cheerful hairy monster who is minding his own business when his co-worker points out that he has a dangerous contaminant (a child's sock) on his back.  Special forces swoop in and give him a rigorous decontamination treatment.  He is left traumatized and hairless (see movie clip).  The co-worker catches George with child contamination two more times in the movie.  At first George suffers another treatment, but in the end George shoves the child's sock in the co-worker's mouth and saunters away.  At the end of the movie, George's hair has grown in and he is happily back at work.

I am currently relating to the sock-stuffing George, although I plan to control myself and not exhibit any violence with any of my doctors.  I look forward to relating to the happy hairy George in the near future.    

Bitter suite

Oh my goodness, the suite that my friends got us for the night before the surgery was amazing.  The linen upgrade was manifested in the down comforter and plush towels.  We had floor to ceiling windows on the east and north sides of our room, yielding lovely views of downtown Iowa City and the sunrise.  The decor was ultra hip and comfortable.  I wish we could have spent more time there, and under different circumstances.  Our thought is to go back in August, just for kicks.      

I was discharged from the hospital this morning before 10 o'clock, if you can believe it.  I was ready, though.  It is impossible to sleep in a hospital because someone is taking your blood pressure or some such chore every few hours.  I only got one 3-hour stretch of sleep and several 30-minute naps.  Yuck.  I was glad to leave and get home to my ladies.  

The car ride home was wonderful.  I rode with my aunt in an '89 Mercedes Benz, which was quite the smooth ride.  I ate a milkshake to soothe my throat.  (The breathing tube I had during the surgery made my throat quite raw, but it is managed with applesauce, milkshakes, and ice chips.)

My wound is doing great, although I can't look at it yet.  I very nearly passed out when I was trying to help my mom change the gauze.  I think I'll just lay down and let her handle that by herself next time.  The two drainage tubes don't really bother me in any way.

I'm just taking Tylenol 3 to ease the pain.  The wound itself doesn't really hurt; it's the muscles in my chest and armpit that are causing so much discomfort.  But again, it's not so bad.  Everyone's love helps it feel better.

Time for a good night's sleep.  Thanks for checking up on me.      

Receding necklines and plunging hairlines

It's off!  I'm done!

I've been awake for four hours.  I ate Pita Pit for dinner.  (My crazy-thoughtful friends printed off a packet of menus for restaurants that deliver to the hospital so that this vegetarian doesn't have to eat coleslaw the whole time.)  I just took a walk around the "block".  My pain is totally managed by Tylenol 3.  I THINK I'm "with it", but I'm pretty sure I'm not totally "with it".  Evidence for this is the crazy amount of typos I am committing and fixing, and the fact that it has taken me 10 minutes to compose this post thus far.  I am usually much speedier than this.  Zoom zoom!  ha ha ha

I was super excited about this post title, but everyone I've run it by has needed an explanation.  See, with only one breast I probably won't be wearing any low-cut shirts any more.  Even if I do, they won't achieve the proper function of showing cleavage, you know?  Plus, I'm currently wearing this enormous sports bra contraption to hold all of the bandages in place, and it zips up in the front, practically to my neck.  That's the "receding necklines".  In contrast, I see my hairlines as "plunging" because my head hair has finally grown in enough that I can see my hairline again.  No more forehead blending into bald head.  My new hair thus far is as dark as before, giving me a distinct hairline in the usual place, which is much lower on my forehead than my chemo stubble.  Hence, "plunging hairlines".  I thought it was a clever juxtaposition, and I've been pretty excited to make this post just for the sake of the title.  I'm hoping that someone laughed before they read the explanation.  :)  

So...not sure what else to say.  I'm sore, but I'm great.  Absolutely fabulous.  Oh, and did I tell you that the initial pathology of the breast skin looks good?  No initial evidence of abnormalities, although there are more tests to perform on the tissue and official results will come through Dr. Oncologist on Friday.  These biopsies from the remaining skin are important because inflammatory breast cancer lives in the skin, and so negative biopsy results from the skin surrounding the removed tissue give us hope for a cancer-free recovery.  It's too soon to celebrate, but this is a promising result that will allow us to breathe and sleep until Friday.  Also, no skin graft!  My surgeon must be wizard because she took a ton of skin and I thought for sure I'd need a graft.  It's definitely the small victories at this point.      

Yea, there's probably way more to say, but this is all I can do for now.  Smiling, check.  Pain managed, check.  Family here, check.  Blog posted, check.  My love to all of you!

I feel fancy

I'll save you a speed-reading skim by saying that I don't have any results yet.  However, the pathologist came into the room during the procedure and took the samples right away.  She and the radiologist think we'll have results this afternoon.

I wanted to let you all know that the spine biopsy is over and I am back in my room.  It is normally an outpatient procedure, but Dr. Oncologist wants me to eat a meal here before she sends me home.  Easiest thing I've done all day, to be sure.

I also wanted to tell you that the spine biopsy was no problemo.  I'm rockin' the morphine et al. and was awake the whole time.  I'm super with it, I just feel about 2-beers drunk and a little bit fancy.  I want to document this experience on the blog because I might not remember it in the future (thank you, morphine).

I was very brave and kept my nerves under control.  I laid down on a conveyor bed and slid in and out of the CT scanning machine a couple of times so that the radiologist could use the pictures to mark up my back with the exact position of the biopsy.  Then I slid out of the machine but remained on that conveyor bed, on my tummy, for the rest of the procedure (~another 30 minutes, less than 60 total minutes on the conveyor bed).  Dr. Radiologist was excellent:  very professional, very knowledgeable, and excellent bedside manners.  He told me what he was doing before every little thing, and every thing was indeed little:  little 5 mm incision, little 16 mm needle, little pressure while drilling through bone, little pain while aspirating bone marrow.  In addition to my oral goofy drugs, he did use a few levels of local anesthetic.  I would say there was only one time that my pain level raised above 2 (on a scale of 1 to 10, 10 being excruciating), and that pain was more surprising than anything.  His nurse was also excellent, and chatting with her and Dr. Rad was very helpful.  They complimented my positive demeanor, and I explained that I have learned how important it is to be patient to be a Patient.  I proceeded to sing the song of the same name from Elmo goes to the Doctor (sorry--not on youtube or google, but you can probably rent the DVD from your public library).  I think that got some chuckles.  The real laughs came, however, when the procedure was complete and he was pulling the needle out of my bone.  He was tugging very, very, hard for a full 30 seconds and simultaneously trying to talk about something.  He started panting as his exertion increased; I told him he didn't have to talk while he was working.  The nurse and tech cracked up.  

OMG, my food is here.   poke tally then I'm out:

"port"  22

right arm 7

tummy  6

left arm  6

left breast  1

superior vena cava 1

T9 vertebral body 1

It's alive!

I have a port.  Above my right breast.  I can't wait to show you some day.  It is a quarter-sized, ~1-cm thick plastic do-hicky perched on a rib just under my skin.  In the center is material analgous to artificial cork, and that is where the majority of my chemo-related needle sticks will take place.  You can put stuff in or take stuff out--how versatile!  From it is a long (10 cm?) skinny irrigation-looking tube that goes into my superior vena cava.  The site of the port is moderately sore, but no need for the vicodin yet. 

My life-saving surgeon put in the port, and I totally sobbed uncontrollably when I saw him this morning.  It was ridiculous.  He gave the anethesiologist a knowing look, at which point anxiety drugs were offered.  I declined, explaining that it wasn't the surgery itself that I was upset about, but rather the whole ball of (cancer) wax.  As promised, I pulled myself together and everything went great.  I didn't feel, see, or hear a thing, which is as it should be in my world. 

In the fog of after-surgery I was giving everyone hugs and making playground playdates.  Nice.

He left the needle in the port and I was wheeled right up to oncology.  I had at least three hours of drips, and it all went through my new port.  I still don't have the names memorized, and I'm not going to look them up, but here's a layman's summary of my drips:  30 minutes of anti-nausea, 30 minutes of benadryl + tylenol + dexamethasone (anti-nausea), 60 minutes of chemo 1, 60 minutes of chemo 2, and 30 minutes of chemo 3.  Then my port needle was removed (yowza, that is some FIRM cork in there) and we blustered home in the appropriately dramatic weather.

What to expect:  bone-crushing fatigue for 4-5 days, then hopefully an upswing until I get this treatment again in three weeks.  Lots of other possible side-effects, but I won't belabor those.  We'll just have to see.  

Time to rest and cuddle the ladies.

Poke tally:
left breast  1
left arm  4
right arm 3
superior vena cava 1
"port"  1