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Showing posts from 2013

2013. Not the best year on record.

There is no denying it - 2013 has been a majorly stressful year for Ryan and I.

It did have its ups (my parents moving back to Ohio, my new job/health insurance), but on the whole it's been pretty difficult for us.

Starting with the brief breast-cancer scare that followed my first mammogram early this year.  A scare that ended up being nothing, but brought with it the realization that fear of cancer RECURRENCE was not all I was going to spend the rest of my life dealing with, but fear of secondary and/or unrelated other cancers as well...

But I didn't just spend this year worrying about my own health problems - my father (tattoo dad) has had indescribably crazy health issues this year as well, a lot of which were terrifying and majorly stress-inducing for me.  It seemed like the poor man could not catch a break this year: complications from a gastric bypass a decade ago lead to a complete gastrectomy (that means he has NO STOMACH anymore, y'all), which lead to various str…

On losing hope... and then finding a crumb and picking the trail back up

After my cancer treatment ended, I felt AWAKE.  I felt newly alive and filled with gratitude and wonder and love and calm.  I felt like a better person.  I felt inspired and believed people when they said they felt inspired by me.Now I feel like I have lost every bit of whatever I gained from that experience.Now I feel defective and unfixable.  I am wracked with guilt, constantly unable to talk myself out of thoughts that I have ruined Ryan’s life and destroyed the confident, invincible man he was before my illness.  I feel hopeless that this cystitis will never be fixed or that the longer it takes, the more broken I will become in the process and the harder it will be to bounce back if I am EVER able to.  And I feel alone.  It’s easy to support someone going through cancer.  It’s something everyone is familiar with and understands.  But once you’re “cured,” that is all some people can see.  They expect you to be all jubilant and healthy and my reality is – that’s over.  The fucking c…

I Never Feel "Caught Up" Anymore

Every time I have a few free moments to sit down and update the blog, I feel like 62 things have happened that I need to address here.  Half the time, this realization makes the task of updating so daunting that I just blow it off entirely.  Today, I feel like I at least need to try to suck it up and get some things out.

I should start with the fact that the phone call with biopsy results that I was promised 2-4 days after the surgery never came and so a full *WEEK* later, I called to find out what was going on.  A few hours later, Dr. Avellone's nurse, Hayley, called me back to tell me that the biopsy results were negative.  Which I already knew on some level, but was glad to hear "officially".  Now it's just a matter of waiting for the biopsies and cauterization to heal and see if I feel any better.  As of right now, going on three weeks later, I don't.  Still in pretty significant pain most days.  Still have to pee 10-20 times a day.  Hayley said that they hav…

Post-Op Catch-Up

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Well, all my anesthesia fears were for naught, not that I didn't know that on some level going into it all yesterday.  In retrospect, I'm pretty sure the worst part of the anesthesia bit is the vague memory of attempting to make some sort of idiotic joke about how much crap was in the OR when they wheeled me in there, clearly on my way to loopy-town but not quite knocked fully out yet.  When seemed like a just a moment later, I woke up in recovery.  And because Todd and Lacey had fully prepared me for this part, I was unshaken by the fact that I was randomly crying for no reason.  
I was in a lot of pain, and the nurse gave me Morphine, which did nothing, then Demerol, which made me sleep for an unknown amount of time, and then Morphine again.  Eventually I was rolled into a little discharge room and they brought Ryan and my mum in to see me.  I'm almost glad I was still a little woozy because being fully aware while the nurse explained to me AND RYAN how to empty and chang…

Friends, Fears, and My Favorite Communist

A month or so ago, I saw that Billy Bragg, one of my favorite musicians, was going to be playing near Cleveland. Knowing I couldn't actually afford to go, I jokingly posted about the show on Facebook, saying that if anyone wanted to get a late birthday gift for Ryan and I... Who would have expected that someone would actually jump on that?!  Well, our good friend, Dan, did just that.  (Thanks, Dan!!!)  Dan is one of the good ones.  Literally and figuratively.  Friends that are so special to us, we basically adopt them as family.  I am extremely lucky.  I have an abundance of friends I can truly say are family to me.  People I know have my back no matter what, and whose backs I've got as well.  And there are so many things happening in my life right now that make the importance of this so much clearer.  But the obvious one is, of course...
...tomorrow's biopsy surgery.  
I think a lot of people missed this little wrinkle in my post-cancer life.  I know probably fewer people c…

A quick "Team Spencer" break

On Sunday, October 13th, I will be waking up on the final day of the second annual Gathering Place Young Adults Cancer Retreat.  And at 5pm that evening, I will be heading to Wade Oval to walk in the Leukemia & Lymphoma Society's Light the Night Walk to walk with Team Spencer!!!

I am walking in honor of Spencer and his amazing positivity.  And in honor of his family and their inspiring resilience.

I am walking in honor of all the awesome Leukemia & Lymphoma survivors I have met in my life (including some from last year's Young Adults Cancer Retreat!).

I am walking in honor of ALL the cancer survivors in my life.  And in honor of a very special anonymous friend's loved one who is just beginning their own battle.

I set myself a pretty high fundraising goal just because you can never really do enough...

If you can donate at all - even a few bucks - please do:

http://pages.lightthenight.org/noh/Clevelnd13/PNelson

Thank you.

Love love, Phoebe

Today is not a good day.

It's hard for me to admit things like that, but I the truth is, it's been really difficult, albeit sort of off-and-on, to keep up the "positive" part of "Positively Phoebe".  I'm struggling today more than I have in a while.  I can't really even explain why.  I just feel lost.  Overwhelmed.  Sad.

When I didn't hear from Dr. Avallone's scheduling person for the bladder biopsy procedure by Friday, I spent an hour on hold trying to call HER.  I didn't want to wait out the weekend without having that shit on the books.  But then when I finally did talk to her (and got the "surgery" scheduled for Monday, September 30th) she told me that I'd have to have some pre-procedure testing done and that I could expect to hear from that office next week.  So I'm basically still waiting to find out just how much work I'll have to miss, and that is stressing me out.  Ryan and I keep saying we are going to really work on NOT stressing…

And, BINGO!

Well, I had my appointment today with Dr. Avellone - my new Urologist.  (I feel like I have more "ologists" than the average 38 year old woman, that's for sure...)  Liked him immediately.  We went over my various symptoms and, much as we suspected, he agreed that they sounded like indicators of radiation cystitis - particularly the pain I have been experiencing AFTER I empty my bladder.  The pain that makes my frequent restroom visits 5 times longer than the act itself just trying to cope with the pain after the fact.  He explained that the as the bladder empties and the parts of the lining that have been damaged come back into contact with each other as everything sort of deflates - it can be painful.  Makes sense.
So, on to the cystoscopy.  If you're not familiar, this is a procedure in which a tube that has a camera on the end of it is inserted in the urethra, and the bladder is then filled with saline so the doc can look around in there and see what's up.  I …

Radiation Cystitis?

Once again, I have not had the opportunity to update since my last visit to Dr. Kebria's office.  My apologies.  (It sure was a lot easier to update regularly when I was in bed most of the day and no one expected anything of me.  Ha.)

So, with the CAT Scan coming back clear and the urine cultures showing nothing abnormal but blood, Ryan's assumption of Radiation Cystitis seems to be the likely culprit.  Basically it is an irritation of the bladder caused by radiation.  (People keep asking if there are cysts in my bladder, but no - "cyst" is just the medical prefix that means "bladder".)  I have a cystoscopy scheduled with a Urologist at my Oncology office on September 11, and that will tell us a lot more about how much damage there is to my bladder and how to move forward with treatment / symptom management measures.  (One of which could be Hyperbaric Oxygen Chamber Treatment - NEAT!!!!)

It's funny.  During radiation, I remember my nurse, Jennifer, sayi…

No Cancer = Celebrating. No Answer = Frustrating.

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My apologies to any reader who do not follow me on either Facebook or Instagram...  I didn't mean to leave you hangin'...

I had my CAT Scan on Thursday afternoon.  My folks were already in the lobby of the Radiology offices at Fairview Hospital when Ryan and I nervously walked in around 1:30pm.  Sometime just shy of 4pm, I finally laid down inside the big "O"-shaped machine.  Well, if a 2.5 hour wait seemed like an eternity, imagine how we felt when we asked the tech how long for the results and she said that while they would have them on Friday, I would probably not hear from my doctor before my follow-up appointment on Tuesday - unless there was something bad on there!  Ugh...

So, knowing that Dr. Kebria is not in the office on Fridays and not wanting to puke if the phone DID ring, I called awesome Nurse Erin around 9am and left a tearful message asking if she had any results - just so we could make it through the weekend without this dreadful uncertainty.  It was …

On fear and love and never living without either one ever again...

I haven't been posting much lately. Without getting into the details of why so much so that they would require their own entire post, I will just say that while Ryan was away on tour this summer, I was not ok. My stress level was through the roof. I wasn't ready, even more than a year after my illness, to be alone that much. I wasn't prepared to do all the things we normally do together all on my own. Especially with the added stress of the hours at my new job being so much longer than those at the job I had during most of his touring days. It was all just much harder and I felt like I was incapable of living up the the "Positively Phoebe" persona I had created while I was feeling so frazzled. So I just didn't blog. Even though the stress I was going through was a natural part of my cancer process, I didn't feel like I could talk about it. Maybe I will write more about that soon, but today's post is about something else...
Last week, I was feeling like…

Coping with Stress and the Fears it Brings

Stress.

It used to be annoying.  Now?  It's fucking terrifying.

In the past, when life was "normal," stress was just aggravating.  Annoying.  Stressful.  Now, in a world where fear of recurrence tortures my brain at least 100 times a day, stress is a goddamned nightmare.

At the moment, I have stressors coming out my assssss:  Ryan being on tour is stressful for me.  And the stress and upset it causes him ALSO stresses me out further.  Dealing with three dogs on my own when I am gone 11+ hours a day is stressful.  Worrying about my father's ongoing health issues is stressful.  Figuring out budgets and how to survive financially is stressful.  Sorting out how to manage what little free time I have is stressful.  Only HAVING a little free time is stressful.  Certain aspects of my new job are extremely stressful (although, overall it is surprisingly less stressful than my old job).  Worrying about things my friends are going through is stressful. Worrying about Ryan is s…

Phoebe's Wordier Follow-Up Post

I’ve been meaning to update everything that was going on when I posted last week, and then I go this morning to look at what I’d written, and I see Ryan’s amazing “The Fear” post and now all the little nuggets that were bouncing around in my head feel like the incoherent grunts of Frankenstein’s monster in comparison.
But I suppose I still feel inclined to give the more in-depth follow-up regardless, as I know people do want to know…
So, yeah.  Let me start with my dad, because I know at least one person left a comment wondering if there was any update on his condition.  My last post was on Wednesday.  By Thursday, I couldn’t take it anymore.  I was nervous about talking to him, but I had to call.  I was surprised that the hospital managed to put me straight through to his room.   And when I heard him on the other end of the line, I was just devastated.  He sounded awful and even worse he said several times that he FELT awful.  Hearing those words come from someone you love and not b…

THE FEAR

Just FYI for anyone following: the follow-up mammogram was all clear, she was told by the radiologist that older tattoo ink can sometimes show up as a spot in a lymph node, that is what they were seeing...

No more specific news about Phoebe's dad, it is apparently a "wait and see" sort of situation... she has talked to him a couple times and he is improving, and is apparently ravenously hungry. These are very good things. ______________
Hunter S. Thompson often wrote about "the fear". Like "THE" fear. Some of it, in his case clearly, was drug-induced; but this is something we all have. Not a specific fear... like "oh man, am I afraid of skydiving and turtles and circus peanuts", but an overall fear. A non-specific panic over the state and pace of life itself. THE fear. The fear is personified in all sorts of evil characters, from children's stories to religious texts. Tolkien of course makes it into an object. A ring. THE ring... and it …

Keep going.

Is it me, or has this been one of those weeks, again, where everything seems to be going wrong for everyone I know?  Starting at home.
A week ago, something really amazing that Ryan had been working really hard toward fell completely apart.  It was devastating and, honestly, is STILL devastating – it’s just that so much other CRAP has happened since then that I feel like it fell apart a year ago, not 6 days ago.  A few days after that, our house refinance ALSO fell through. 
And then that same day, my aunt called from Florida to tell me that my father (Tattoo Dad) was back in the hospital.  For me, this has been the most difficult of the bad news.  The details all seem very hazy still.  The bits of the conversations I’ve had with my aunt that stick out in my head are “found in a ditch” “on his bike” “collapsed” “doesn’t remember anything” “brain bleed” “transferred to neuro hospital” “too out of it to give HIPPA release consent” “CICU”…  I’m fairly certain that it is not as doom &am…

Dear Dudes. Don't be so Dumb. Love, Phoebe

So, I'm feeling completely destroyed right now.  And it makes absolutely no sense at all.  And I am so mad at myself because of it.

At lunch today, one of the shop guys says to me, right as I sit down, "So, when are you going to have some kids?"

I was stunned, and just sort of curtly responded, "I can't."  He clearly felt terrible.  Apologized.  Mumbled something about adoption always being an option.  Then *I* felt bad for making him uncomfortable and explained that I never really wanted kids anyhow.

But as ABSOLUTELY true as that statement was, is, and continues to be, it seems to somehow be completely separate from this pain in my gut that makes my eyes water and my heart catch in my throat.

I fucking HATE that that decision was made for me.  Despite the fact that I never wanted kids.  Never.  Not once in my life do I ever remember feeling differently - not even for a moment.  I have zero interest, and moreso, I have zero resources.

So why?  Why, when…

Being Okay vs. Being Pretty Awesome.

When I was walking through the shop this morning on my way to my desk, I passed one of the guys who works out on the floor.  We exchanged the standard morning pleasantries, and when I asked how he was this morning and he responded, “Pretty awesome.”

Wow… I was immediately ashamed of my mopey “Okay” response.  I should be the one who is “pretty awesome” today.  But instead I’m filled with the stupid asshole-y nervousness that goes along with today being not only my quarterly oncology follow-up, but also exactly a year and a half since my diagnosis.  I should be feeling pretty awesome.  First off, because instead of this being 3 months since my last visit, it’s 4 since Dr. Kebria felt so good about my last exam.  And secondly because it’s only been a year and a half and I don’t have cancer.  And I HAVEN’T had cancer in over a year.

I should be feeling pretty awesome.  My life?  It’s pretty fucking awesome.  Why on earth am I letting the nerves get to me??

I mean, I know why.  We’ve tal…

Another "Year". Another Day. Another Fear.

A year ago today, I experienced the single most romantic moment of my entire relationship with Ryan.  I was sitting at Ruby Tuesday’s with my mum and her sister and brother waiting for him to arrive.  He walked in a few moments after I had settled in, went straight past the empty seat, and literally picked me up out of my chair with the most incredible hug ever.  Ryan’s not the most outwardly affectionate person who ever lived and he’s definitely not PUBLICLY affectionate, like, ever.  The reason for this display of affection was the results we got, a year ago today, of what I hope is my LAST ever PET scan.  The “no more cancer” results.  Weird to think it’s now OFFICIALL been a year since we officially got the official news.  The reason Ryan was so overwhelmed with happiness that he was so uncharacteristically openly affectionate is that on that day, it was “over”.  I was cured.  It was like getting the go ahead to return to and proceed with “normal” life.  Yeah, right. There is …