For Sale

I had a very special visitor earlier this week: my mom!  It was a last-minute thing; someone was able to watch the farm so she could come for a few days.

While here she helped me with a ton of things around the house.  Now my shrubbery is beautiful, the house is clean, and my kitchen is uncluttered.  Aside from all of that, it was just nice to spend time with her.

We ate out a few times, but otherwise the days were unscheduled and relaxed.  Each time she visits, I realize just how much we need to be near each other.  Living far apart has been difficult over the past few years, but we’ve managed.  Now that I’m sick, though, I can’t visit as often, and it’s been an emotional struggle for both of us.

With that, I am announcing that the farm is for sale.  It’s a 15 acre farmette located 2 hours south of Pittsburgh.  It would make a great country getaway or permanent retreat.  You can learn more and request a showing via the website.  Please share this with your network of family and friends.

Seth and I will visit her at the end of June as long as I’m healthy enough to make the trip.  Until then, our daily phone call will have to suffice.  I’m very fortunate to have such a close relationship with my mom.  And with everything that’s going on, I really need her here.

Quoth the Raven

I became enamored with quotations when I was 9 or 10 years old, and I’ve been collecting them ever since.  They inspire, console, or challenge me just when I need them.

When my peers covered their notebooks in hearts and boys’ names, I adorned mine with quotes that inspired and amused me.  (It should come as no surprise that I didn’t fit the ‘norm.’)

Some say quotations are used only when one doesn’t have an original thought of his own.  On the contrary, I think it would be arrogant to think there have never been great minds from which we can learn.

So if you will indulge me, I’d like to occasionally share with you some of my favorite quotations.  I’ll try to give some background and tell you about the author, if lesser known.  More often, I will probably use them as mini-posts when I’m not otherwise inspired (or entertained) by life’s foolish trials and tribulations.

Napoleon Hill was the father of personal success and self-help books.  His 1937 Think and Grow Rich is one of the best-selling books of all time.  Although I haven’t read it, I do like to refer to one of its most popular passages.  I hope you enjoy it too…

“Do not wait; the time will never be ‘just right’.”

I Feel Preddy

Today is my 6 month cancerversary.  That means it’s also my estimated original expiration date.

To commemorate it, I made a very difficult decision to go on a short course of prednisone.  You might remember we had a torrid relationship from November through March.  Well, after my latest setback I’ve had quite a tough time getting back on my feet.

My doctor discussed prednisone with me in late April when my cough started getting bad again.  When I grimaced at the thought, he assured me it’s certainly my decision, and I stored the option for future reference.

I discussed it with him once again today and decided that I need the help.  The course will be a matter of days, not months.  60mg for 2 days, 40mg for 2 days, 20mg for 2 days, and 10mg for 2 days.  And because it is so short, I should avoid the worst of the side effects.

I took the first dose 10 hours ago, and I’m already starting to cough less.  This stuff is AMAZING.  I expect over the next few days I will feel like superwoman, and I’ll have to be careful not to overdo it.

Oh, Prednisone, we both knew I couldn’t stay mad at you!

10 Things You Shouldn’t Say

I came across this article last month, and I want to share the content I feel is most applicable.

Title: 10 Things not to say to someone when they’re ill
Author: Deborah Orr
Originally published: The Guardian on 18 April 2012.

1. “I feel so sorry for you.”  Uh, thanks?  Being the object of your pity won’t make me feel better.  Instead, try this: “I wish you didn’t have to go through this.” or “It really sucks that you have to deal with this.”

2. “If anyone can beat this, it’s you.”  So many of my darling friends have said this.  And I know you mean well.  You think that you are telling me how strong I am.  But it’s not comforting to think of my medical illness like a dragon I must slay, and that if I fail it is only due to my own shortcomings.  Please realize that the last thing I need is guilt that if I’m not doing well it somehow reflects on who I am as a person.

3. “You’re looking well.”  This one is tricky.  Again, something that would normally be a niceness feels different when you’re ill.  First, you’re probably lying.  And if you’re not, the last thing I want to know is how well I’m hiding my own personal hell.  If I want your opinion on my appearance, I’ll ask.

4. “You’re looking terrible.”  Well, at least you’re being honest now.  But if I want to comment and poke fun at my blotchy skin or cankles, let me take the lead.

5. “Let me know the results.”  I’ve been guilty of this with my own ill friend.  But the last thing I want when waiting for soul-crushing life and death news is the obligation to update (even my closest) friends as soon as possible.  I will talk when I’m ready, and fortunately for my friends, that’s usually pretty quickly.  It does help, however, when you offer to spread bad news to others who may be anxiously awaiting.

6. “Whatever I can do to help.”  Everyone says it, but what does it really mean?  Instead, try “Can I take you to lunch and the yarn store on Tuesday?” or “Can I take your list and go grocery shopping for you this week?”  In turn, I need to be prepared to delegate.  Finally, please know that often I need help but don’t feel up to company.  It might feel one-sided if you just bought me groceries, but I don’t feel like chatting – you’ve been advised.

7. “Oh, no, your worries are unfounded.”  No one has ever said this to me.  But if you do, please be prepared to be punched square in the nose.

8. “What does ____ feel like?”  I don’t get this much.  And actually, I’m quite guilty of asking my cancer friends: what does chemotherapy feel like, what is it like when your port is accessed, etc.  If you are a cancer patient, scared and anxious, I’ll do my best to help answer your questions.  But if you are just curious, please ask the internet.  Again, if I want to talk about it, I’ll bring it up.

9. “I really must see you.”  Please don’t put it on me.  It’s fine, though, to say “May I stop by after work?” or “I have tickets to a play on Wednesday.  Tell me that day if you’re up to going”

10. “I’m so terribly upset about your condition.”  Me too.  Please remember this is not about you.  If you are too upset to see me, send a card, reply to my blog, send flowers or presents.  But please don’t add your anxiety about my condition to the boatload of things I’m already dealing with.

So that’s the list.  I’ve heard most of them, and I’ve certainly said most of them.  No worries, though, we can all do better moving forward.

The most important thing is that you show and tell me how much you love and support me.  And I love you all for it.

Much Too Young

I really don’t know where to start.

It was Sunday afternoon, I was day three into chemo, and I wasn’t feeling well.  I had a fever, my cough was worsening, and I just… well, something just wasn’t right.  By 6 o’clock I had spoken with the on-call doctor twice, my fever was up to 100.7, and we agreed that I ought to be seen at the hospital.

I was in so much pain from coughing.  I could barely stand or walk, but Seth managed to get me into his truck and off to the ER.  (We now know an ambulance would have been a wiser route.)  The wait at the hospital was unbearable, and the actual ER experience was the worst I’ve bared.  The nurses couldn’t access my port, but their antics in trying to do so rallied a crowd.  Once they finally put a needle in me it took three tries to relieve my pain.  I imagine that happened sometime around 11pm.  And I suppose that’s when I started vomiting too.

For hours.  I would pass out, wake up, vomit, and repeat.  At some point I was admitted and transferred to a room upstairs.  I had to have been sick for 5 or 6 hours, but only Seth would know for certain.  The Dilaudid which controlled my pain also made me quite ill.  Or maybe it was the chemo; we will never know.

The next thing I knew it was late Monday morning.  I was starting to ‘come to,’ and I sent Seth home to take care of the bunnies and try to get a couple hours of sleep.  It was the first overnight he ever had to spend with me at the hospital.

The doctors heard sounds in my chest consistent with pneumonia, so they started me on some heavy-duty antibiotics right away.  They needed a CT scan, but since I have an allergy to the contrast dye, I had to be ‘prepped’ for 12 hours first.  Nothing more would happen on Monday.

My scan was scheduled for 8am, and it went off without a hitch.  And then, then I got the results.  There were three things to discuss:

1. I had pneumonia in my right lung.  No big shocker here.  I was on the antibiotics, and my fever was already improving.
2. I had a pulmonary embolism in the lower lobe of my left lung.  Wow…  How did that get there?
3. There is a small ‘spot’ on one of my vertebrae.  Um….  What?

Seth was with Gracie at the vet.  I knew he would be by shortly, and it really wasn’t news I wanted to deliver via text message.  Plus, nothing was confirmed.  This was just a red flag that there might be a problem.  Left to my own devices, I reached for my phone.  The message went to my ‘cancer penpal’ in Pittsburg: “They just told me that I might have a spot on my spine. “

The march of the doctors began.  I needed a bone scan, and the earliest available was Wednesday morning.  Yet another day in the hospital.  Each time I saw another doctor, I learned a little more.  Finally my oncology nurse made her rounds, and I got the scoop from her.  If it was cancer, the chemo drugs would stay the same, and I may need an additional injection too.

My bone scan was Wednesday morning.  Yep, that confirmed things a bit.  First, I had a fractured rib – probably from coughing.  And there was definitely something in the spine.  So more tests were ordered.  An MRI and ultrasound of the legs.  The MRI would give a better examination of the tissues in the back, and the ultrasound would make sure I didn’t have any other blood clots.

The ultrasound took 45 minutes, and I was in the MRI tube for an hour and a half.  The good news: no blood clots.  The bad news: “a focal lesion within the T8 vertebra, consistent with osseous metastatic disease.“  More cancer.

My oncologist returns from vacation on Monday.  Until I speak with him, I’m just trying to keep things in perspective.  Maybe this is something we would have never seen unless I got a scan during this point in time.  That is to say, maybe the chemo would have squashed it, and I would have never been the wiser.  The radiology report didn’t measure the spot either, so maybe it’s very tiny, and I’ve started chemo just in time.

I have a lot to think about.  I’m still very sick from, well, the reason I went to the hospital in the first place; on top of that, I feel like I’ve spent the last three days in the spin cycle of a washing machine.

More than anything, I need everyone else to stay calm right now.  And if you are part of my mom, brother, or Seth’s support system, please be strong and brave for them.  No matter what this means for me, I know it would be harder watching someone you love go through it.

Chemo: Round 1

The port went in on Thursday, and my first round of chemo was on Friday.

It went as well as it could, I guess. I arrived as scheduled for my 9:15 appointment. First I met with the office manager. She had a form for me to sign to apply for financial assistance for one of the drugs, Avastin.

Next I met with a nurse and a tech who took my history (questions I’ve memorized by now), weighed me, and measured my blood pressure and pulseOx. Then the tech accessed my port. I didn’t know it was happening in that room versus the treatment room, so I asked her to explain the entire process as she performed it.

I unbuttoned the top of my shirt (purchased for this exact activity), and she used 3 betadine swabs to cleanse the area. Next she exposed the Huber needle, told me to take a deep breath, and then plunged it into my chest at a right angle.

Yeah, that hurt more than I expected!  It almost felt like a pop because the needle was so large in diameter. They offered to write a script for a numbing cream I can use prior to future appointments.

She took blood first and then flushed the port, leaving the flush syringe taped to my blouse. I was now “accessed” for the day. My blood was quickly processed in their on-site lab to make sure I was eligible to get chemo that day.

I met briefly with the doctor who was filling in for mine (he’s on vacation). We talked through each drug and all possible and probable side effects. I asked for two prescription refills, and our business was concluded.

Next I was escorted back to the treatment area. This 12 x 20 room has 8 or 9 reclining treatment chairs lined around the walls in a U shape. I found a seat where Seth could pull up a less fabulous, cloth-covered stacking chair to keep me company. It would get busy throughout the day, but there was never a complaint or dirty look about having someone there with you. I can’t believe I’ve heard stories about offices where they don’t permit it!

I didn’t jump right into chemo like I thought I would. Instead, there was another form to sign (consent for the actual drugs of the day) and several pre-meds to take. They included an anti-nausea drip, a push of anti-anxiety meds (because I asked for it), and a steroid drip to reduce side effects.

Finally, around noon, it was time for chemo. The first drug took approximately 30 minutes, and I nodded off halfway through. I would awake every now and then to see if Seth was still sitting next to me. It was a 50/50 shot. Between the first and second drugs I was able to provide a urine sample, which was required prior to getting drug #3. (If there’s too much protein in your urine, you can’t have that drug.) All was fine, and drugs 2 and 3 were administered in a similar manner, needing 60 and 90 minutes to infuse, respectively.

We left sometime after 3pm, additional literature in hand. I was very tired, but it was quite underwhelming as compared to what I had imagined in some moments of anxiety.

And then, I waited… For two days I ate carefully and watched the sky vigilantly for falling shoes.

ImPORTant

I arrived at outpatient registration shortly after 7:30am on Thursday morning.  There were no other patients, and the intake employee waved me to her cubicle.  I explained that I pre-registered the night before and just needed to pay the $150 surgical co-pay.  We completed this transaction, and Seth retrieved a wheelchair from the lobby so we could make the trek to Interventional Radiology.

We followed the ‘green line’ for five minutes, negotiated another administrative obstacle, and were finally allowed to enter the quiet, private waiting room.

It felt like we waited for-ev-er.  Truthfully, it was probably 20 minutes.  The TV was on – Matt Lauer was in London for the Today show – but I really didn’t care.  The only thing on my mind was the gravity of the day.  The placement of a port that may never come out.

My nurse, Erin, finally retrieved me from the waiting room.  I gave Seth a kiss, and he settled in to watch a movie on his portable DVD player.  (When I bought it for him years ago, I never dreamt I would be the impetus behind so much of its use!)

I expected to be led to a locker room, much like a typical radiology department with ‘gowned waiting rooms.’  This, however, was a smaller, more specialized department where many procedures are performed on admitted patients.  The changing area was an over-sized private bathroom with a built-in bench.  Erin handed me a gown and ‘personal belongings’ bag.  I disrobed from the waist up and tied the gown loosely behind my neck.

When she returned, Erin led me to the large, cold operating room.  I sat on the table, removed my shoes, and placed them at the far end.  She covered me in nice warm blankets – ahhhh.

With a little effort and not as much confidence as I would have liked, Erin started my IV.  It should be the last one I’ll need for a very long time.  I lied down on the table, monitors were hooked up, and fluids were started.

Erin would be managing my conscious sedation, and I told her from the beginning that I wanted to be as knocked out as possible.  Quite often, people are awake and just don’t care what’s going on.  I wanted to be OUT.  She explained that the amount of sedation she can give depends on how low my blood pressure goes.  I wasn’t confident at this point.  I always have really low blood pressure (90/52, for example), and I started to worry it would be too low to sedate me as much as I wanted.  Perhaps this worry cranked me up, though, because I weighed in at a sturdy 112/70!

A surgical assistant draped and prepped me for surgery.  While we waited for the doctor, Erin started me on sedation to see how I would handle it…

I awoke in recovery.  And like every other time I’ve ever been sedated, I asked, “is it over?”  I love anesthesia.  I was pretty out of it for a while.  Erin said she’d never given anyone that much sedation.  (Woohoo?)  The recovery nurse helped me sit up and pushed a drug to make me more alert while we waited for my O2 to come up.

Seth and I left the hospital around 11am and hit a drive-through for a snack.  Around noon, I retired for a well-deserved nap.

May Day Mayday

I met with Interventional Radiology on Tuesday to discuss port insertion.  Imagine my surprise when the nurse said, “wow, they want to do this right away.”

Huh?

“They have you starting chemo on Friday.”

HUH?

“And you’re already scheduled for the procedure on Thursday.”

WHAT?!

Somewhere along the way someone forgot to tell me that all of this is happening so quickly.  I thought I would have until the middle of next week to worry about getting the port; and then another week or so to fret chemo.

Instead I’m now 7  hours until surgery and 27 hours away from chemo dose #1.

Most of my anxiety has shifted from the port surgery to the actual chemo.  Specifically, I’m worried about how sick I will get.  Since everyone is different, there’s no way to know how I will react.  But with my sensitive stomach, let’s just say I’m trepidacious.

Thanks for your notes of encouragement over the past few days.  I’ll write soon with an update.

In My Shoes

My friends have asked that I express when I need something.  So here it goes…

My cancer is progressing, and now I must prepare myself for chemotherapy.  But no matter how I try, I feel like no one ‘gets’ what a big deal this is for me.  Specifically, I’ve been freaked out about having a port inserted.

I know it’s good to get one.  I know it’s a standard procedure.  But it’s still very… invasive.  I’ve never had anything implanted in my body, and even though it’s a “standard procedure,” it’s a really big deal to me.

I need my feelings validated.  I need to hear “yes, that would freak me out too.”

I know chemo will bring its own set of fears, but I’m trying to take this one step at a time.  And I just need to know that anyone in my position would be scared too.

Hoppy Day

Blossom is feeling better.  I didn’t have to force-feed her today, and I think in another day or two she’ll be back to 100%.