Friday, August 24, 2012

No more "Pet scan tomorrow"s

Today couldn't have gone any better, really.  Not only was my PET scan perfectly clean, but also Dr. Oncologist said that I don't need any more PET scans.  I'll repeat that:  clean PET scan and no more PET scans.

Has the goodness of that news sunk in yet?  I don't think it has for me, either.

She said that I will remain under her watchful eye forever but particularly until November 2013, which will mark the two year anniversary of completing all of my treatments for inflammatory breast cancer.  Since the PET scans have been clean twice in a row and they require the injection of radioactive molecules (which as you know cause CANCER), we are going to cease the precautionary PET scans and only use them to confirm suspected new cancers.

But I won't have any recurrences or metastases, so I'm claiming that yesterday was my last PET scan ever.  Huzzah!!!

I will still see Dr. O every three months, and she will check my blood for tumor markers and other signs of cancer.  I will miss her, but like Mary Poppins, she swooped in and performed her job so that I can get back to my happy life.  Right now it is not a kite but me that she has sent soaring.  


Wednesday, August 22, 2012

Not used to it yet

I keep thinking that the next PET scan is going to be the one for which my heart neither skips nor pounds out its beats.  And it must always be the next PET scan, because I never have peace with the present PET scan.

I had a clean PET scan in May and felt jubilant.  I felt as though I had conquered the cancer issue at last.  I felt that with one clean PET scan under my belt, I would not suffer the same magnitude of nerves in the future.  Yet the mind is a tricky thing.  I find myself thinking that if we could be certain that the cancer was conquered, I would not be having this PET scan in the first place.  If there were nothing to be worried about, there would be nothing to be looking for.

I have been plagued by over-thinking my entire life.  (It causes me to perform poorly on muliple-choice tests, particularly in non-science fields where I find that most answers are shades of correct answers and it's impossible to choose only one.)  Now my over-thinking is causing pre-PET scan sleep deprivation and crabbiness.

It doesn't help that there was no yoga class this week.  Attending yoga once per week has been a great outlet for physical activity, maintaining range-of-motion in areas of scar tissue, and meditating.  I can accomplish the first two aspects of yoga at home, but have not yet been successful with home meditations.  Too much commotion, too many obligations, too much to think about.  This week I would have greatly benefited by a meditation session to relax and center myself.  On the bright side, I'll have a silent hour in near darkness tomorrow while the radioactive glucose incubates in my body, searching out cells with high metabolic activity.  Yes, that will be a good meditation time as long as I can keep my mind off of my purpose for being there.  Ha!

Sigh.  I am a healthy person, I just have to remember that.  Another year or so and I will have fewer scans, and in just a few years I won't have to be scanned at all.  I can go back to living in ignorance of the rascally thing my body might be up to.  Go back to being a healthy person living in bliss.      

Monday, August 20, 2012

Family vacation 2012 installment 2

Another one of the Children's Program activities was to do a cooking project with one of the two staff bakers (yes!) in the new $750,000 kitchen (yesss!!!).  They made popovers.
Azalea enjoyed her handiwork.

Eleanor enjoyed her handiwork so much that she wanted seconds.  Sadly, there were insufficient popovers for seconds.  Poor Eleanor!

I have failed to mention that the theme of the week was geology.   Two professors of geology were on the island all week to give mini-lessons on Minnesota geology.  One day one of them came to the Children's Program with a microscope (YESSSS!!!!) and everyone examined salt, sand, and other rocks.  My nephew is pictured here.  

Note the smile of pleasure on Azalea's face.  

Everyone should look through a microscope from time to time!

And now for a few random "around the camp" photos.  In the background you can see the neighbor's cabin, and behind it their neighbor's cabin (there are only 5 cabins; ours is behind the camera).  Pictured are grandma Lori, my nephew, and Azalea doing a watercolor art project.  We enjoyed many art projects that week.  

Children's Program has a room adjacent to the lodge that is filled with books, dress-up, crafts, and Foosball.  We could go in there anytime to play, and the dress-up options were impressive.    

The lodge has tons of games and puzzles, and Aunt Molly especially loved the puzzles.  We helped her from time to time.  

There is a Camp Unistar talent show on the last night, featuring any campers and staff who want to participate.  Ian and the girls sang Golden Slumbers (by the Beatles).  He sings it to them almost every night before they go to sleep, and they have it memorized, too.  It was incredibly precious.  

We're already counting down until we can go back next year. 

Thursday, August 16, 2012

Family vacation 2012 installment 1

In July we spent a week at Camp Unistar, a week-long family summer camp on Star island in Cass Lake.  We parked the car at the SailStar Marina and took a ferry to the island on a Saturday.  The ferry didn't return for us until the following Saturday.  Delicious food was provided in the mess hall at the blow of a conch.  Paradise?  I think so.
Ian helped Eleanor tie-dye a shirt with the Children's Program.  That's right, there were children's activities scheduled every day from 10-12, and you could drop your kids off or stay with them.  Now do you believe me that it was paradise?

This is Eleanor goofing around with a fish face after tie-dying her shirt.  

Fishing with daddy/Uncle Ian.  Eleanor was the first one to catch a fish.  She was soooo excited until she reeled it up out of the water and could see it flopping around.  Then she screamed, and Azalea screamed, and no one wanted to fish anymore.  "Dad, I want you to take my worm off the hook so that I can still fish."

This is the best picture I got of my honey and I, and it's not so bad except for the angle.  Favors our chins in a less than flattering way.

One of the Children's Program activites was to write letters to the fairies that live on Star Island.  

We then took a hike through the woods with our letters to the fairies (note that Eleanor chose to hike in a princess dress for the occasion).

We found the fairy village on our hike.  We inspected their cool houses and left our letters under a rock.  

The beach was one of our favorite activities!  Cass lake is crystal clear, and the camp's sandy beach goes on and on.  There are two platforms anchored in the water.
My Nori Rose.

To be continued...

Wednesday, August 15, 2012

Good if not thorough news

Today the nurse called from Dr. Dermatologist's office with my biopsy results.

Biopsy #1:  persistent shoulder rash.  The nurse on the phone said that the doctor, "thinks its a rare form of eczema."  He thinks?  We biopsied this baby and someone still lacks confidence with the diagnosis?  This is why it's better to get the results in person and read the pathology report with the doctor.  At any rate, I'll see Dr. Oncologist next week after the PET scan, so I'll ask to access the skin biopsy report then.  In the meantime, Dr. D. prescribed a strong steroid to motivate the rash to go away.  We're to give it 2 weeks to be effective before we try other approaches.

Biopsy #2.  black thigh non-scab.  I was told that this was a benign growth.  I like the word" benign", but not the word "growth".  Again, I am keen to read the pathology report and get some more details on this odd growth that sprang up in the last few weeks.

All in all this is definitely good news, but I am greatly looking forward to learning more details about these conclusions.  

In the meantime I will add more substance to this post with a teaser of our summer vacation photos.  The next post will be the vacation photo essay.

After dinner on a windy evening, the four of us hiked across the island to sunset rock.  Here  you can see me stepping over a log while the girls are ducking under it.  The sun's glare through the trees indicates that we are near our goal.  

We discovered that the lake was calm at sunset rock (part of the rock is captured on the bottom right, with various of our garrments sunning on it) despite the wind on our side of the island.  We stayed for a long time, throwing rocks in the water and running along the beach.    
My Azalea Bud.

Tuesday, August 14, 2012

In the flesh, out of the flesh

I'll do another post shortly with pictures of our family vacation to northern Minnesota, but first a brief health update.

Let's begin by establishing the fact that I am wonderful.  I am, no, that's not quite it...nearly ecstatic on a daily basis to be enjoying life (specifically summer life) with my daughters, husband, friends, and family.  We have gone on bike rides and had sleepovers and listened to bands and grilled on the patio, and it has all been so wonderful.  I have experienced many thankful moments in which I recalled my previous thoughts of not being alive for summer 2012.  At diagnosis almost 2 years ago I faced the very real potential of not surviving this long.  And here I am, in the flesh, enjoying every minute of it.  My bathtub could use a cleaning, but let's not disrupt the grace of this paragraph with the extended list of neglected chores.

Speaking of flesh, mine has two doctor-made wounds in it.  Last Friday I saw Dr. Dermatologist, on the recommendation of Dr. Oncologist, to check out two unusual areas on my skin.  Near my right shoulder I have small patch of 5 contiguous raised bumps.  They do not itch or hurt.  I first noticed them when I arrived in San Francisco, so I presumed that my backpacked had rubbed during traveling and had caused an irritation.  A week or so later I realized that they were still there, so I put some hydrocortisone on them.  This is the stuff previously prescribed to me for my post-surgery eczema.  But the hydrocortisone made the rash spread in a painful way.  I remembered from a different, post-radiation chest wall rash that hydrocortisone aggravates fungal infections, so I treated my rash with the remaining anti-fungal from that episode.  The hydrocortisone-induced rash disappeared, but the original rash remained.  The I thought that maybe my supposed fungal infection was either resistant or insensitive to this antifungal, so I applied a different antifungal leftover from the childrens' diaper-rash days.  When it was clear that this third attack was being ignored by the rash, it was time to call Dr. O.

You might be wondering why I did not call a doctor sooner.  I elected to try my own treatments based on my own experiences because the first thing that doctors tell you is to watch the (fill-in-the-blank) ailment and look for changes.  I do not as a rule recommend such cavalier patient behavior, but since my rash was not getting bigger or worse (hydrocortisone treatment excepted), I gave it some time to resolve so that I could report all of the data at the time of the appointment.

And that is what I was able to do.  Less than two months after noticing the rash I sat in Dr. Dermatologist's office and recited the history of my rash.  He said that it could be a rare form of eczema that occurs near joints (the name he rattled off completely evades me), but that he'll take a small sample (biopsy) to be sure.

Excellent!  This type of firm decision-making via informed prescription or biopsy is exactly what I was looking for!

That is the story of biopsy number 1.  The cause of biopsy number 2 is actually what motivated me to make an appointment (indeed, a different way to interpret the above story is that I was procrastinating taking action on the innocuous shoulder rash).

Cause #2 used to reside on the outer flank of my right thigh.  I noticed it nearly three weeks ago when scratching an itch.  It was raised and rough, like a scab, and the size of a pinhead.  For a few days I thought it was a scab.  But then I realized that it wasn't behaving like a scab by, you know, falling off.  Upon closer inspection it was black in color rather than that rusty scab color.  The one thing going in its favor is that it was quite symmetrical, and the ABC's of melanoma start with Asymmetry.  At any rate, Dr. Dermatologist's possible explanation for this non-scab scab was that a cluster of blood vessels burst under my skin awhile ago, and now that the burst had reached the top it appeared black.  But he decided to biopsy it anyway, and unlike the shoulder rash I think that the entire troublemaker was removed.

I'm moderately terrified that I will be embarrassed when I am obligated to post that the results of the biopsy indicate "blackhead", but I suppose it would be Dr. Dermatologist who should be embarrassed for biopsying said blackhead.  

All in all this is excellent timing for my flesh samplings because the dreaded PET scan is next Thursday (8/23).  Rooting for a second clean one, marking two clean ones in a row, which MUST be OUTSTANDING news for ME and my FUTURE after IBC.  I suppose I'm also rooting for good flesh biopsy results, but at present I am (perhaps naively) unconcerned.