Course 1 - pump free!

Okay, first infusion officially and completely done.  I headed back to DFCI today to get the pump disconnected.  A few minutes after 3pm it let out a high-pitched whine letting me know that it was empty.  Luckily I was already in a comfy chair in the infusion center before that happened.  My nurse showed me how to disconnect the tubing from my port, then flushed the port with saline, "locked" it with heparin, and de-accessed it (removed the needle).  It is expected that I can do all that myself going forward, at home, to save me the trip in... I'm not convinced yet, but I'll get another training session next time.

So far it has not been terrible: some trouble sleeping the first night, thanks to one of the anti-nausea meds; noticeable yet tolerable nausea at various points since yesterday morning; not much of an appetite; generally tired and feeling kind of meh.  I didn't take any of the additional prescribed nausea meds because I wanted to see how I really felt.  After describing my last couple days to the nurse she advised me to take it - no reason not to eliminate that symptom completely if possible (I took it while I was there, and will do so through tomorrow).  Now I wait and see how long it takes to bounce back.

I found the worst part to be the stupid pump.  It reminded me too much of the hospital.

And now, maybe a nap...

Course 1 (of 12)

Well, the bad news is that I lost the fantastically detailed blog post that I wrote continuously since getting to DFCI this morning.  The good news is that the worst thing that happened today was losing that blog post.

And as I'll never be able to recreate it, let me sum up:

- Arrived on time for labs only to be told they were running 45 minutes late.  In reality it was more like an hour and 15 minutes.  So the whole day was backed up a bit.  It only really affected me eating lunch (which I did do eventually).

- I was more worried about my port behaving for the blood draw than almost anything else, believe it or not.  But it did!  Relief.

- The regimen I'm on is known as FOLFOX.  After an appetizer of two different anti-nausea medications, the first two hours were an infusion of oxaliplatin (chemotherapy) and leucovorin (not chemo; a supplement that works with the chemo).  The nurse advised me not to google these today as I was on info overload already - gentle readers, please do so on my behalf if you wish and I'll catch up with you in a day or two.  The third is known as 5FU (that's right, eff you, cancer).  I got a bolus of this at the infusion center and am now on the way home with my awesome pump full of f*you that will continuously administer the drug for about another 2 days.

I was told to expect to develop a sensitivity to cold basically anytime now, that will last a couple of days (thanks to the oxaliplatin).  I was also told to expect fatigue to set in in another day or two.  There are some other possible side effects but those are apparently the most common.  At the moment I feel fine, and felt fine during the infusions... it's a waiting game.

So in the meantime, some pics - my view from my spot in the infusion room today:

Me getting infused:

And my new toy:

Let's see what tomorrow brings.

Here we go

More news as events warrant...

Out and about

I felt almost normal today... not like someone who received a stage IV cancer diagnosis and had two surgeries all in the last two months.  I didn't sit around my house all day.  Instead I did stuff normal people do all the time:

- I drove my car.  First time since going back in the hospital the second time (over a month ago!).  I'm glad to report I've not forgotten how.
- I got my hair cut. Fourth time chopping it off for Locks of Love.  That's eight years of growing and cutting.  Here are my braids for donation and my new look.  Shortest and grayest one yet!

    

- I ate lunch out.  It was just Au Bon Pain, but still, it was lunch out!
- I had an appointment for a breast ultrasound.  I also had a "surprise" mammogram, as I was apparently due for one (but hadn't scheduled it).  This was really nerve wracking; I wasn't sure if the portacath would be in the way, or the ostomy for that matter... sometimes you have to hold awkward positions against the machine, and I do not have a long torso, and just assumed all this would be in the way or would get pulled uncomfortably during all the boob mashing.  In the end it wasn't that bad, but it did remind me of everything going on and I was all teary in between images.  The ultrasound revealed lots of cysts but this wasn't really a surprise.  Since I started regular mammograms, just two years ago, I've also had three ultrasounds and maybe 5-6 cysts aspirated (no bad results).  I had one aspirated when I was 35 or 36 also - had an "early" mammogram as I had felt something, and thankfully it turned out to be nothing.  (That traumatic experience resulted in an awesome de-stress / decompress dinner with my excellent friend Dean.  Thanks again, Dean!).  And since I've lost so much weight, the tissue was more dense than the last time around, which meant additional squishing and scanning to get a good look.  Luckily, the doctor didn't see anything requiring aspiration this time so just another ultrasound for me in six months.  Huge relief and glad to have this out of the way before treatment starts.

And then I came home and had a snack and watched some TV and all is well :)  Looking forward to a relaxing weekend before heading back into the unknown.

Lovanox and Oxycodone free!

Another one down and another one down... today was my last Lovanox injection (blood thinner).  I'm now officially discharged from the visiting nurses.  They were all wonderful - good listeners, compassionate, and thankfully not afraid of needles like me.  Thank you, CareGroup Home Care, for taking such good care of me these last many weeks!

I'm also finally off the oxycodone.  The last one I took was this past Saturday.  Since then it's just been a little ibuprofen if I feel the need.  In fact I just realized today I haven't taken anything, and took my walk already and everything.  I will take that as a good sign.

I'm walking about a mile every day now.  I'm still slow, but am improving, as the MapMyRun screenshot will attest.  I'm also trying to get back to some simple yoga.  After eight weeks of craziness I was appalled to discover I can no longer touch my toes!!!  I used to be able to put my palms on the floor but now am a couple inches away from the floor all together.  I also have a fear of raising my arms over my head, which I'm battling by raising my arms over my head every time thinking about it makes me nervous (all the time).  This is in line with my mission to stand up straight.  I'm getting better about it, though my default is still to hunch and protect the belly.  Baby steps.

Otherwise - trying to relax these last few days before chemo begins and we get to know that unknown.

Chemo gets real...

I just scheduled my first chemo treatment for Monday 9/28 12:30pm.  My oncologist has said it sometimes helps to have a date on the calendar, even if we end up moving it.  I had called his office this morning to check in and see what date might make sense.  Half an hour later the scheduler called me to get it on the books.  She suggested either this Friday or next Monday as that was his next availability.  I admit I had a small panic attack there on the phone... but then I said let's do Monday, and there it is.

She assured me there is no problem to push it out if I think I won't be ready.  I don't know that I would every be ready -- how is anyone ready for chemotherapy?  Now I have an appointment in my calendar that I can stare at and think about.  Hoping that date will stick, as thinking about it for a whole other week might make the anxiety worse.

Aaaaggghhhh...

Catastrophizing

I mentioned in another post about the nerve blocks that I had for a few days post-op as part of my pain management, and how they were removed somewhat suddenly, and how anxious that made me.  At that point, I had had enough of pain -- every little thing that had to happen prompted the question "Will it hurt?"  And knowing that those blocks made a difference, I was especially worried I would plummet into some awful dark place where no drug could save me.

I said this in so many words to the anesthesiologist who was there to take them out.  After assuring me that removing the small catheters wouldn't hurt a bit (it didn't) she told me about catastrophizing.  I had never heard of this before.  She told me, in a very direct and no-nonsense way, that this was not a path I wanted to go down, that always expecting the worst pain could really mess with your mind and potentially exaggerate how I experience pain, how it could turn into a chronic condition.  She said all this while tending to the task at hand and let me know there was quite a bit of literature on the subject, if I was interested.

And when she was finished, she stayed for another ten minutes and gave me this awesome pep talk.  I'm not sure she intended to but that's definitely what it felt like.  She validated my anxiety to a certain extent; I can still see her standing in front of me, exclaiming, "Of course you're going to have some pain - they cut you up!"  Then she talked about believing in your body's ability to heal, your ability to tolerate more than you think you can, your capacity to handle discomfort and pain when it happens, and not falling into the trap of expecting it to happen all the time.  It sounds cheesy but her primary advice was to believe in yourself - to have confidence that the pain will not last forever, that you can manage it, that you will heal, and to believe this deep down and view each day of recovery (and beyond) through this lens.

I've been thinking about her a lot the last couple of days.  I think I am nearly over my recovery hump, mostly because I'm thinking less about how I'll get through each day and more about the future.  Soon I will have a new start date for chemotherapy and I'm already worried about what will happen when they push a bunch of toxic chemicals into my body.  Maybe not pain, per se, but other side affects that will be tiring or annoying or uncomfortable or weird or scary, or all of the above.  But there isn't any sense in worrying about it; whatever is going to happen will happen.  If I want to eliminate the disease it's something I need to do. 

I also know it's normal to be anxious and scared and depressed -- it's not even two months since the first visit to the ER, so much has happened and changed, so suddenly -- that's plenty to mess with your mind.  I'm having my fair share of tears.  And I'm trying to remember that hopefully this is the beginning of the end of this craziness.  I'd love for whomever is reading this to help me remember that, too.

Walking

I didn't make it to the post office the other day - anxiety got the best of me (more on that later) - but I did today!  I'm still on my way home.  I found a bench in the shade and am taking a quick rest before I finish the last quarter mile on the Minuteman.  Nice late afternoon sun rays on all the cyclists going by.  I used to be one of them - maybe I'll recover enough to manage a short ride before the real cold weather gets here.

I don't carry my phone with me everywhere, especially in my house, but this walk is a new personal record for Steps and Distance since coming home from the second surgery:

Pretty funny how those graphs reflect reality... 8/27 was the surgery, and my phone was on my bedside table for the next six days.  Came home on 9/2, outing for staple removal on 9/11, and first "real" walk was 9/14.  Maybe I should look at this more often...

Flights climbed is bogus though - I climb my stairs at least 10 times a day, but again my phone isn't always with me.  Just so y'all know I'm not a total slacker.

Time to get all the way back home...

3 weeks post-op deserves dinner out!

My post-op follow up appointment with the surgeon today was all good -- incision and wounds healing well, pain well managed (not much of it left, even), ostomy working as expected -- bottom line is there are no concerns about me moving ahead with chemotherapy on whatever date my oncologist and I work out.  She expects I'll go through the full treatment regimen regardless, though at this point I'm not sure what that is.  Originally it was 12 courses of chemotherapy, a 48-hour infusion about every other week, but we'll see if anything has changed given the mass is removed and we're now trying to destroy whatever might be left.  According to the pathology there are some "scattered atypical cells suspicious for carcenoma" on my right lateral pelvic side wall.  So that's what's left. 

The pathology report is quite something.  I don't think I've ever had as strong an urge to google so many words at once as when I read the diagnosis in this report.  And now having googled a bunch, I am maybe only today realizing the havoc this stupid cancer wreaked on my insides: lots of acute/chronic inflammation, abscess, salpingitis, serositis, adhesions, and of course the tumor which "invades through muscularis propria into pericolonic/perirectal tissue and subserosa."  My right ovary was something like four times its normal size and the tissue basically replaced with the "metastatic colonic adenocarcinoma."  Yeah.

And I only got the first three pages -- the remaining ten pages of "gross description" were not provided, which is fine by me, as the one paragraph starting that section on the third page I did get was way  more information than I needed.

The report also has the AJCC (American Joint Committee on Cancer) Classification: at least pT3 N2a M1b

According to info on the American Cancer Society website, it means the following:

T3: The cancer has grown through the muscularis propria and into the outermost layers of the colon or rectum but not through them. It has not reached any nearby organs or tissues.

N2a: Cancer cells are found in 4 to 6 nearby lymph nodes.

M1b: The cancer has spread to more than 1 distant organ or set of distant lymph nodes, or it has spread to distant parts of the peritoneum (the lining of the abdominal cavity).

All that together results in a stage grouping of Stage IVB.  See how much we've learned today??

Since we weren't sure how long the appointment would be and traffic around the Longwood medical area is always crazy, we took our daycare friends up on an offer to pick Connor up and watch him for a bit.  My husband and I took the time we did have to enjoy a dinner out, first time since before I went back into the hospital.  It's the most normal I've felt since the end of July :)  And so I'll end this post with a decent 3-week post-op photo from our date:

Missing the old normal

One of these days I want to wake up and feel normal - not the new weird scary normal, but the old comfortable normal.  I want to get up out of bed without thinking about it, eat whatever I want without thinking about it, get on my bike again, pick up my son, go take a walk or get on the bus or drive my car without the now customary period of mulling over whether I'm up for it or not.  I am not used to so much reflection about every little simple activity in my day.  It is starting to drive me a little bit crazy.

But, I think I'm still making progress, and am trying to get back to my real normal as best I can.  Last Saturday I went to a barbecue at my manager's house and saw many of my IT colleagues, which was wonderful... I sat the whole time, but still, an outing!  (I am grateful for the leave I'm currently on to recover, but I'll admit I do miss work, just a little bit.)  On Monday I took a walk with my daughter to the tennis courts down the street - here's our first-walk-out-of-the-house selfie:

Yesterday I took the same walk all by myself.  Today I am considering walking .7 miles to the post office and the bank - playing that by ear, but I think I could do it, especially if I take a break before coming back.  I'll have to mull that over later and see.

So that's one goal down.  I haven't yet gone a day without the oxycodone (maybe today will be the day).  I still have to consciously straighten up every time I stand or start walking (very strange for me).  I've removed some of the remaining adhesive - sneaky stuff, that is, hiding out where you least expect it. 

And now I have one new goal: GAIN WEIGHT.  I stepped on the scale a couple days ago and was shocked to realize I've lost a little over twenty pounds since all this started.  I could have stood to lose a few I'm sure, but twenty is not what I was shooting for.  All the visiting nurses have recommended Ensure.  Maybe going to the store to buy some should be my walk for today instead...

Tomorrow is my post-op follow up appointment with the surgeon.  Hoping for an all clear, or positive reinforcement, or something.  And then, if all goes well, I'm having a dinner date with my awesome husband :)

Healthcare, revisited

Thanks for all the great comments on my last post about what this care might cost.  The author of the Time article, Steven Brill, also has a book that was published earlier this year, America's Bitter Pill, a copy of which I just got.  In between the article and the book it appears he experienced serious health issues of his own, giving him another perspective from which to analyze the topic.  

I'm only on chapter three so far but highly recommend it - very articulate and well-researched.  I'm expecting to learn quite a bit.

http://www.americasbitterpill.com

Goals

Thinking about my ongoing recovery and arrived at these goals for near future, like this week:

1. Stop taking oxycodone.  I'm down to a single 5mg pill just once a day, usually in the late morning.  I haven't taken any today yet actually but starting to feel the need; we'll see.

2. Stand up straight.  I'm still a bit nervous every time I move, and when I stand up and walk my habit is to hunch over to protect my belly.  My back will start hurting (this happened after first surgery) so need to start straightening up.

3. Get all this freaking adhesive off my body.  The tape has been gone for weeks but this stuff lasts FOREVER.

4. Take a "real" walk.  Outside, even.  Not too far, but farther than the backyard.  I miss just getting up and going.  And right now a commute to work seems unimaginable - a bus, train, and almost-mile walk to get to the office???  

Baby steps...

Staple free!

Well, one more step forward... the staples in my primary incision are now gone and replaced with steri strips (little pieces of sticky bandage that are supposed to fall off by themselves in a few days).  Given everything else going on with my belly, I admit I barely noticed the staples were there, despite the incision being fairly long.  That said it does seem a bit more comfortable to bend now.

Of course nothing can be simple.  All week I've asked my visiting nurses about removing staples since I've never had them before - I'm a complete ninny now and needed reassurance that this would be a quick and painless experience.  They all assured me it would be.  For the most part this was the case; a tug here, tiny sting there, until the very last one.  That one made me yelp when the technician tried to remove it.  Apparently the staples can start to twist and bend the wrong way, particularly when they are "ready" to come out.  She had to get a second technician to assist and they spent a few minutes twisting and bending it back so they could get it out.  Unexpected and not much fun, but it's out!

I also have to have a daily injection of Lovenox, a blood thinner, as a preventative measure against blod clots.  Since I am a ninny now, and also since I know it's temporary, I can't bring myself to do this on my own - I need the visiting nurses to do this for me.  However on the days I have an appointment, I'm not eligible for a visit.  This meant I had to find someone at Brigham who could help with it today.  The nurse wasn't in yet at the surgical office where I was for the staple removal, so I ended up going to my oncologist's office and asking if they could help (luckily Dana-Farber is right next door to BWH and connected via indoor pedestrian bridges).  They could - but even though I had brought the pre-filled syringe with me, they had to still get an order for the one dose from my doctor, have the pharmacy bring it up, and administer that injection instead of the one I brought (for all kinds of good reasons, I'm sure).  A lot of fuss for a 2-second injection, but it's my own fault for being a ninny and not planning ahead.

Thanks to the injection, I did get to see the infusion area where I will be for treatments.  I guess it is cozy enough for what happens there.  But I'll wait and think about that once we have a new start date on the calendar.

First week home

I have now been home for one week.  Recovering from the second surgery has been quite different from the first.  I was back to work (remotely) 6 days after the first surgery.  6 days after the second one, I had only just been discharged.  I'm trying to remember that so I don't think I'm not making any progress this time around.

There are a few things I've managed to accomplish though - as of today, I can:

-- sleep through the night without additional pain meds (no more setting my alarm for 3am!)
-- walk up and down the stairs without my cane
-- take a more or less normal shower
-- empty the dishwasher (but no lifting too many plates at a time...)
-- get up the outside stairs to hang out on our back ledge patio
-- pick the tomatoes in the garden
-- make it through the day with a much smaller dose of oxycodone than when I first came home

Still not allowed to pick up my little guy but trying to snuggle him as much as possible. And I still haven't taken a "real" walk, just puttering around the house, but I guess that's good enough for the moment.  I also can't quite bend forward all the way to pick stuff up but can work around that to some extent (yoga is handy).

On Friday I have an appointment to get my incision staples removed.  That will be the first time I've left the house since I came home.  Fingers crossed.

What does this really cost?

I've become a little obsessed by the financial aspect of all this hospitalization and medical care.  I posted a rant of sorts about health insurance the night after my second surgery, and am still baffled by how health care actually works in this country.  Again, I am extremely fortunate - I have a good job with a great company that provides excellent health insurance to its employees.  I don't want to think about where I'd be if that weren't the case.  Just going through everything I've gone through so far has been stressful enough.  I can't imagine the added stress of worrying about a pile of medical bills.  It is hard to believe that we put anyone in that situation.  You can't heal with that kind of stress.

So, I'm trying to keep track.  My primary insurance provider (Blue Cross Blue Shield) sends a statement for every claim to explain how it arrived at some amount I owe a particular provider.  Sometimes I then also get a bill from the provider for that amount.  Last, I'll get a separate claim statement from my employer's supplemental insurance plan indicating that the amount has been paid.  If I have a copay for a doctor visit or medication, I pay it, and that is usually reflected as well.  This all happens without me doing anything. 

What I don't get is this idea of a "discount" that is given to the insurance company.  It's different for different things.  For example, the cost of anesthesia for my first surgery at the end of July was $1,680.  That is what the provider charged.  According to the BCBS statement, a "Blue Cross discount" was applied of 905.52 (54%), for an adjustment amount of 774.48.  Some part of this is "covered" - in this case, 619.58 (80%).  End result is that I owe 154.90 - 20% of the adjusted amount.  This charge was also considered "in network;" I assume it would be different (more) if it was out of network.

My owing 20% of the adjusted amount is consistent on the BCBS statements and in line with what I know about my policy.  But the "discount" applied is all over the place.  I expect this is what the insurance companies are negotiating with providers... does this mean the same anesthesia provided to me would cost something different if it was provided to someone with a different insurance plan?  Is Mount Auburn charging everyone the same initial cost and then all the insurance companies negotiate different discounts, for different types of costs?  How do they come up with these, how do they justify them?  How can the same anesthesia cost me one amount, and someone else another amount, just because of the insurance company we have?  Does it actually cost $1,680 for that service, or is that amount inflated because it is expected that an insurance company is going to pay some portion of it?

I've never really paid much attention to this so maybe these are naive questions.  But I really don't get it.  The insurance companies seem to have all kinds of power here, and all the money, and I think we must be getting the raw end of the deal.  It's hard to sort out.

All that said I'm really glad that anesthesia was provided.  To date, out of pocket we have spent just under $500, mostly on hospital parking.  I can't complain.  But I do worry about what other people have to go through and wonder why this works the way it does.

Little things

Tonight, I washed my hair.  Kind of silly but also kind of a milestone.  

For those who don't know, the last several years I've been growing my hair out long - takes about two years - then cutting it off and donating it to Locks of Love.  This year will be my fourth donation.  I usually cut it in October, but may do it as soon as I can tolerate sitting "normally" for an extended period again, maybe in a couple of weeks.  As I understand it the chemo I will get does not have the side affect of hair loss (or at least a very low risk) but I may as well be prepared just in case.  

As a friend of mine once said, so much fuss about a dead protein... may be easier to be rid of it regardless!

Catching up

I'm attempting to readjust to home by catching up on mundane household tasks - putting away laundry, opening mail, paying bills, that kind of excitement.  In doing this I've realized one unexpected pro of being in the hospital for three of the last six weeks: there are no charges on my credit card!!

I can't do very much at once, especially if it involves standing or walking around, but I did take three "walks" to the bedroom on the opposite side of the house.  I may venture down the stairs for dinner, too.  Coming up was okay; hopefully going down isn't too much harder, especially with my new trusty cane (we have an old house with very steep stairs).  I also managed to stay on top of my meds schedule today and that makes a HUGE difference.  I'm done with all my antibiotics now, just pain meds are left.  Hoping I can cut back on those in the not too distant future.  Just need... less pain.

I also realize I kind of missed summer.  I still haven't really processed everything that has happened since the last week of July.  Everything changed so suddenly and drastically, without warning, without reason.  One of these days I'll absorb it.

Home

Made it home.  Made it up the stairs.  All scrips are filled.  Trying to stay on top of meds without going nuts, keep walking without getting overtired.  Took my celebratory coming home nap already.  Feel like I could sleep for a year.  

Over and out for today... thanks all for the support and good wishes.

Hard to believe I went through this door nearly two weeks ago:

Homeward bound

Surgical team has cleared me to go home!  It's always great to hear that, and then immediately terrifying.  So many questions and little things that will temporarily be big things - flat bed that's harder to get in & out of, stairs, clothes that won't bother the incisions, injections I'll have to give myself (surprise), scheduling all the meds... argh.

Also turns out there was a friendly feud between the surgery and infectious disease teams.  ID wants me to finish out a certain course of antibiotics but surgery wants me to go home.  Apparently there was a compromise and I should be able to finish whatever antibiotic is needed by mouth.  That said there is still something cranking away on my IV - I sense not everyone is on the same page yet...

Well, let's see if we can figure out how to get this show on the road, or pause it if needed...

Stage IV

My surgeon received the pathology today and confirmed the tumor on my colon was perforated and the cancer had metastasized to both the right and left ovaries.  The uterus was unaffected.  Four lymph nodes were affected out of the twenty-something they removed.  She had also seen something on the small intestine but turned out to be just a pus like substance, not tumor.  There is some evidence that cancer cells remain on the right pelvic wall.  She'll confirm with my oncologist but chemotherapy is still the expected next step once I've recovered from this surgery, possibly followed by radiation.

Oh, and she removed my appendix too.  Package deal.

No real surprises, I suppose - we always knew it was stage III or IV.  What a lot of internal real estate to remove at once.

So now to recover already!

New doctor

Doctor Connor makes everything better.

Less is less

During surgery last week they put in two nerve blocks, on the right and left of my abdomen, to help with pain.  They are very similar to an epidural just in a different place. The medication flows directly into the catheters.  These were two of my many tubes.

On Sunday one of the connections became disconnected and no one noticed for a while.  It probably came loose when I moved from the bed to the chair.  This was the day of my big walk, and after sitting in the chair for a couple hours I realized I felt pretty lousy and was not sure why, and worried about walking when I felt that way.  When a nurse came to check vitals and placed the blood pressure cuff, I noticed my gown was soaking wet; the medicine had been dripping on the chair for a couple hours.

I got re-connected and in a little while felt much better again.  So I knew what a difference the blocks were making.  Yesterday they removed them all together and I was very nervous about the pain getting worse, but it held steady most of the day.  I even didn't take the full dose of my oral pain meds thinking I didn't need it.

That was a mistake.  Last night was long and the incision seemed to just radiate and throb all night.  I finally had to ask for the "backup" IV meds at 5am just to get some sleep.  I am trying to get back on track now and make sure I take the full dose every time, on time.  I am all for two fewer tubes but I wish it could have been a smoother transition.

Little speed bump.  And I keep remembering I'm just trying to get home so I can recover fully from this surgery.  I haven't even started chemo.  I don't even know what else is coming for me.  

Today might be a long day.