Beginning 2008 is The End

This will be the last entry of this blog.

I’m glad I started it, as it served its purpose well.  At a time when my world was spinning out of control, when I didn’t know how to connect with people while I felt so disconnected, it gave me a lifeline.  I was able to talk about cancer, and how it was affecting me, in my own time.  It allowed friends and family members to get the ever present question “But how ARE you?” answered in their own time, when they wanted to know but didn’t know whether to ask.  It gave me strength to move through the past year knowing, through notes of encouragement, that I had people who care about me alongside me.

When I was first diagnosed, before getting the full picture, I feared the worst — my life was going to end soon.  I didn’t filter any of the findings I wrote about along the way because in my view it couldn’t be any worse that the initial news.  But as I pulled through the diagnosis and treatment, I became confident that I was not facing debilitating measures for the rest of a short life. 

So when I had my metastases scare last month, I hesitated to post about it at all.  I didn’t want to take anyone there with me who didn’t need to know.  I wrote about it earlier, but didn’t post until the day before I would get the results — getting credit for informing folks, but not allowing them to worry long.  Chances are, most people would read the two at the same time.  No sense getting anyone upset if it was nothing, and even if it was something, it didn’t have to be devastating. 

That’s what I have learned in the past nine months — it’s not all or nothing.  Even if the news is not great, there are options and there are great successes (although rare, I’ve read stories of women living up to 20 years with stage IV breast cancer).  That’s not something that anyone newly diagnosed, or the people that care about them, can really wrap their heads around even if bombarded with success stories at the beginning.

In 2008 I am putting cancer behind me.  I will of course be diligent in my check-ups, self-exams, water intake, daily meds/vitamins, and diet.  But I am done reflecting (at least publicly) about cancer.

It has meant the world to me that you have kept reading.  I know at first it’s hard to know what to say, and then as the news becomes reality personal lives take precedence again.  But I have been really touched by the e-mails, notes, calls, and expressions of kindness throughout the year.  I am hoping to give back much of that this coming year.

May 2008 bring you health and happiness.

Photo Op

Hip lipoma …

Good News

The news is that it is likely a benign lipoma, but the journey to arrive there is of course much more suspenseful.

Throughout this process I’ve not been prone to be particularly positive or negative in my assumptions.  I’ve drawn my conclusions on facts and perceptions, albeit incomplete or erroneous ones.  Just as I was certain that the ultrasound in March indicated a malignant tumor, once my hip ultrasound ruled out a cyst, I was just as certain that this mass was a malignancy of some sort.

I knew, from talking to Jimmy, that the other possibility was a lipoma, but it just didn’t seem to fit.  Here’s a description of lipomas:

Are small [0.4 in. to 1.2 in.] and felt just under the skin.

Are movable and have a soft, rubbery consistency.

Do not cause pain.

Remain the same size over years or grow very slowly.

This is large (> 3 in.) and feels deeper, affecting the muscle running up my back.  It’s fairly firm, and it does cause pain up my back and down my leg.  Also, the radiologist report from the ultrasound stated that it appears consistent with the surrounding “musculature” … not fat layer.  I didn’t know how fast it had grown, but I had a massage in April and the massage therapist hadn’t mentioned it.

So in short, going into this week’s diagnostic testing, I was not encouraged that it was a lipoma. 

The MRI on Wednesday afternoon went more or less without a hitch, but getting my radiology images to take with me proved to be a little more challenging.  My mom and I waited for about two hours and finally left for home with several copies (due to adminstrative SNAFUs) of my MRI, bone scan, and CT scan.   We started out for DC the next morning at 7 am for an 11 am appointment with CDs and ultrasound film in hand.

About an hour out from the hospital, I picked up a message left on my cell phone from the WVU radiology department.  Once I realized who it was, I quickly hung up since I didn’t want to hear any news while stuck in traffic (with a full bladder to boot), without the benefit of the surgeon to tell me the next step.

In the waiting room, as if answering my worst fears (or at least my penultimate one), a man with his leg amputated clear to his hip was wheeled in by his wife. 

They quickly took us back to the exam room, but then we waited about 1-1/2 hrs to see the doc.  I was prepared for that since they were squeezing me into an already busy pre-holiday schedule, but it didn’t make waiting much easier.  Luckily my mom kept me entertained with stories about her childhood home, my grandparents, and various other topics.  She kept my mind off of things.

While waiting I did call in for the message from the WVU radiology department.  I figured when talking with the doc I needed to have all the information possible.  She was calling to say that they needed additional views “dedicated to the area of my hip.”  I’m wondering, what the heck did the dedicate the first round to?

When the ortho oncologist came in with the nurse I’d spoken with on Monday, he gave me an exam.  He checked my range of motion, pain in movement, asked whether I’d lost weight, and asked if I had any other lumps detected.  After several minutes of that, he said that the MRI film was a bit challenging because they focused on my hip bone, and had missed half of the mass itself.  But from his clinical examination, and the half of the mass that he can see, he said he feels confident that it is a lipoma as it appears to be the same as the normal layer of fat under my skin.

I am so glad that I made the trip, even though exhausting, to see a specialist.  This very experienced orthopaedic oncologist knows what the clinical signs would be if there was a mass this size invading the musculature of my hip joint.   He is also experienced enough at seeing MRI images of hip joints and lipomas to be able to identify it even with the MRI images incomplete.

He is scheduling me for surgery the second week of January.  He will still biopsy the tissue to verify no malignancy, but I am feeling very positive that I’m in good hands and can trust his clinical impressions.

If I had not made the leap to search for a specialist, I would be spending today getting another MRI and still worrying about it, and likely not hearing results until Monday (if even conclusive at that point). 

I am very thankful for my good fortune.  A very happy holiday indeed.

Hallelujah

More on the positive news tomorrow … I’m exhausted from 10 hrs driving and a very long day.

A Christmas Wish

About a month ago, I was marveling at how great I felt.  I was thrilled to be reminded of how it was before my diagnosis.  I had energy, I didn’t ache, I was sleeping extremely well, and my mind was back.  Since I had forgotten how that had felt, suspicions had crept in that I had just been getting old.  But recently those thoughts were discarded.  I was on top of the world.

I just couldn’t leave well enough alone.

It had been about a month since my bone scan, and a couple weeks since my CT scan, and I hadn’t yet heard a thing about the results.  Up until then, I had been thinking, no news is good news, right?  So I called the oncology nurse.  She looked up the results, and came back with an “all clear” on the CT scan, but the bone scan showed some “uptake” (radiology-ese for “somethin’s up”) in my jaw (of course she said “mandible”, which triggered a google of my memory and found my “Invisible Man” childhood.) 

She had asked me if I’d been feeling any jaw pain.  She couldn’t tell me which side, the report hadn’t said.  Of course, over the next several days I’d interpreted every little twitch or ache as the bone metastases (mets).

I then talked to Jimmy and he told me that often it is a dental problem that shows some bone irritation or infection.  A couple days later I went to the dentist (regular check-up already scheduled), and he took a panoramic xray.  Nothing showed up there, so at least I felt it wasn’t something major happening.

I then went into my GP to talk to him about the extreme thirst I’d been experiencing for the past year, to see if he had any ideas.  I also had not seen him since my dx, so I wanted to touch base with him and find out if there was anything general health-wise (post chemo) I should be aware of, and to get any info on menopause.  I also figured I’d discuss the whole jaw thing with him.

He assured me that breast cancer just doesn’t metastasize in the jaw.  I asked him about brain mets, and he explained that that’s due to blood flow to the brain, not the skull.  So again, still highly unlikely.

After about a week of fear, I was finally satisfied from the various consults that I did not have bone mets, and that it would likely be explained by a simple dental irritation.  I decided that to help myself relax after that ordeal I would have a massage. 

That was ten days ago when it had been exactly one day since I’d put aside my worries about my jaw when my friend, and massage therapist, found a 3 inch diameter mass on my right hip.

I was mildly worried, but after a couple days of talking with friends (and of course Dr. Jimmy), I decided that it was a Ganglion cyst and that it was no big deal. 

I still went in pronto back to my GP, and also called my oncology nurse, so I could get it checked out at the cancer center.  The GP looked at it and assured me that it was not breast cancer.  He agreed it was likely a cyst, and he ordered an ultrasound.  In parallel, I had the oncology nurse set up an appointment with the breast surgeon.

Three days later, to align with another appointment in Buckhannon I’d made several weeks before (Gyn to discuss having my ovaries ablated for recurrence mitigation), I was back at the exact same hospital where I got my initial “suspicious mass” ultrasound of my breast back in March.  Boy that creeped me out.  It brought all that initial anxiety back.

And there, once again, the ultrasound tech was not terribly encouraging.  She confirmed it was not a cyst, no fluid to be found.  It was a mass.  And it was almost indistinguishable from the surrounding muscle.  This was confirmed by the radiologist report the next day.  That was last Friday.

I immediately called the oncology nurse after I received the ultrasound report to see if she would schedule the MRI recommended by the radiologist.  I didn’t want to wait until the Monday appointment with the surgeon, because I wanted to be diagnosed before Christmas.  I just couldn’t imagine having the uncertainty.

Over the past week I have had increasing pain and discomfort radiating from that hip.  I haven’t noticed growth in the ten days, but I’ve only really been monitoring it for a few days (because I first thought it was a cyst and no big deal). 

My consult with the breast surgeon at the Cancer Center was Monday morning.  Again, not a lot of encouragement.  The mass moves some (good), but is fairly firm (bad).  An MRI, which is scheduled for this Wednesday, will tell us more definitively what it is.

The surgeon is the replacement for the doctor I came to really appreciate through my treatment this year.  Carl and I are guessing that if this isn’t her first post residency / fellowship position, it nearly is.  Given that and the fact that this is mixed up with muscle and bone in a fairly critical joint that I want working when it’s all said and done, I decided I’d better start looking for alternative surgeons.

Thank you Google, I was able to find an orthopedic oncologist at a hospital in DC where I’ve had excellent care in the past.  And they are able to squeeze me in this Thursday, before they break for the holiday.   I’ll have my MRI films on CD from the day before, and the director of the Orthopedic Oncology department will be meeting with me.

It’s a strange unsubstantiated wish, but I hope that if it’s cancer it’s a new type, not a metastases of the breast cancer.  My breast cancer is an agressive one, Grade 3, and metastases would put me into Stage IV, which you are never really “cured” of.   If it were a different cancer then I could hope for two Stage I cancers.  That seems much more manageable.  Of course, that probably has no actual scientific merit.  Having two types of cancer cells circulating in your body is probably not a great thing either.  And apparently this hip thing (if it’s cancer) did not respond to the chemo I took (there are other types though, so don’t despair!)

But at least with the test and consult this week I’ll be able to go into Christmas with a plan in place.  I just couldn’t imagine facing the holidays with so much uncertainty.

Santa, if you’re listening, all I want for Christmas is a clear MRI!

Better Red than Dead

(Sorry, sometimes my dark humor gets the better of me)

Here’s a recent pic of me as a redhead with my dad. 

“Survivor”

That’s not me.

I have struggled with this label since my diagnosis.  I cringe when the term is associated with me.  The word seems harmless enough, like it should be hopeful even.  And I certainly don’t  begrudge the comfort that many who have been diagnosed with cancer find in it.  I just don’t want it applied to me. 

It was Carl who uncovered our best technical reference book on breast cancer, because I had tossed it aside after it was given to me by the NCI volunteer at the hospital.  The reason?  The title was “Be a Survivor”.  <bleh>

Why is it that it urks me so?  Because what I associate with being labeled a “cancer survivor” is arrogance and delusion.

Arrogance because the celebratory label of survivor distinguishes me from those who didn’t survive cancer, even though the distinction between us has nothing to do with anything I did or didn’t intentionally do.  It has been just pure dumb luck that separates us.  Just as it is not our fault that we have cancer, it is not our virtue that keeps it at bay.

I have more in common with my departed comrades in cancer than with the non-cancer populace.  We suffered the same fears during diagnosis, the same life upheaval due to demanding protocols and stress of uncertainty, and the same disabling side-effects of treatment.   Our paths only diverged when their prognosis faltered, leaving us with different roads to travel.

Does the person who walks away from a fatal car crash revel in calling himself a survivor?  No, in fact survivor guilt is often felt, bringing forth a mourning of both the life lost and the life saved.  “Lucky duck” is more fitting, and even that label is associated with an event, not an on-going state of being.

Which leads me to the delusional part.  It falls in line with how I started this blog:  all of us alive are survivors, and it is a state of being applicable only to this very moment.  To claim the title as an attribute of my life implies that I have better odds of survival than the next guy, which in fact is the opposite if the next guy is otherwise like me but without cancer.

Yet our lives are distinctly different once diagnosed with cancer.  Each ache and pain I ponder … each time I see an elderly person in the grocery store I am wistful that I may never get there … each time I look at a long range financial plan I am stymied with uncertainty.  To call myself a survivor belies the fact that my life expectancy has shortened since my diagnosis.

But what label do I use?  There is no “etic” for cancer, no way to identify myself as someone who is being monitored and treated for an on-going disease.  It very well could be gone from my body, but there’s just no way to be certain.  So the medical approach is based on the assumption that it is still there.   And there was certainly something about my body, and my environment, that allowed this to happen in the first place.  So there is an effect on how I live my life, without an easy way to define it.

If I say I have cancer it has the implication that it is going unchecked, or that my prognosis is poor.  I have also associated “remission” with a managed cancer that does not leave open the possibility that it has been obliterated.  So I have not taken ownership of having “breast cancer in remission” either.

I suppose there’s no need to have a label at all.  Everyone has his or her own struggles that make life challenging, and very few have succinct labels.  Considering I would only bring it up if in a conversation that was relevant, I likely wouldn’t have to distill it down to a soundbite.  It’s not hard to say “I was diagnosed with breast cancer and have no signs of recurrence thus far.”  It’s a mouthful, but I think I’m up to the challenge.  After all, I am a survivor.

Pits

I’ve been avoiding my blog. 

I don’t know exactly why but I have a couple theories.  First theory:  radiation was no picnic.  I had read/heard that it would be a breeze compared to chemo, but in fact it was harder in many ways.  And the side effects I’ve been experiencing recently are a lot more personal.  Who wants to read about cooked breasts and unmedicated menopause?  Or hear me further whine about abusive medical staff?

Second theory: now that my treatment is over, I am better able to put cancer far from my mind.  I need that because in those moments that I am hit with the realization that I have cancer, knowing that my aggressive defense is behind me, I am floored.  Every new ache or pain prompts a visceral supposition of metastases.  So I rule it out and quickly push those thoughts aside.

But I do want to share the good news that my radiation treatments are over.   It was very liberating to not have my daily “drop everything” alarm go off at 9:15 (though no reprieve the day after my last treatment when I had to drive to Morgantown at 6:30 a.m. for a bone scan). 

In synopsis, two of the three radiation therapists made me dread coming every day, and that “second opinion” doc from Morgantown, near the end of my treatment, filled in for the absence of the local radiation oncologist. 

I should have results back from the bone scan this week.  I’m not expecting they’ll find anything, but when I saw the hemo oncologist last month and told her of a persistent pinpoint pain in my back, she suggested we get my baseline bone scan now rather than later.  And she also ordered a CT scan that I’m scheduled for next week. 

Better safe than sorry I guess, however in driving away after my bone scan last week it did firmly put that familiar pit back in my stomach.  But once again I pushed those thoughts quickly aside … and avoided my blog.

Poisoned

By food, that is.  Monday night all three of us were struck with violent heaves that kept us up and sapped us of all energy.  Yesterday we lay around the living room with high fevers and no appetite, watching every episode we had of “Harold and the Purple Crayon” and “The Muppet Show” while we moaned in near unison.

I’m convinced it was caused by tainted pizza we ate Sunday night.  It dramatically punctuated why I needed to stay away from restaurants when I was neutropenic since this certainly would have sent me to the hospital, or worse.

Yesterday we were really wishing for local grandmas, since we discovered a 3 year old with food poisoning has a lot more energy than two adults suffering the same fate.

Poison Ivy

That’s what it feels like, this rash on my chest.  Except the hiker’s curse only lasts for a week, and I’m ten days into this and unlikely to see any relief for several weeks.  I’ve got less than three weeks left of radiation treatments, but apparently the effects last for a few weeks beyond (kind of spooky if you think too much about it.)  I do have some prescribed cream that helps.

For the most part I’ve really been doing well, but week before last I hit a low point.  I was physically unable to do much, and ended up going to bed early almost every night — even though then I couldn’t sleep.

It’s odd in that it’s the inverse of how I felt during chemo.  Then I was for the most part physically capable (except for a handful of days) but mentally toast.  Now my mind is back but I find it hard to get motivated to do much.  I guess what is the same is the difficulty sleeping.  I’ve been going through Benedryl like crazy.

I don’t know if my symptoms are really from the effects of radiation though.  I rather suspect it’s hormonal changes due to induced menopause.  Everyone I’ve asked who has had menopause symptoms has taken hormones to relieve them, so I can’t really get much in the way of anecdotal reassurances.   I suppose I could research it, but I just haven’t taken the time.  Or maybe I don’t want to be discouraged.

Almost ten years ago my friend went through menopause w/o hormones for the same reasons, and I remember conversations with her about it.  But the details weren’t relevant to me then so they didn’t stick.  I only offered sympathies and lame suggestions for homeopathic remedies.  But she’s not here to commiserate with me now.

Friday I meet with the (hemo) oncologist again.  (I never thought I’d have so many onocologists that I’d have to qualify them.)  She’ll likely prescribe the Tamoxifin, which I’ll get started on after radiation.  I really hope that works out, because I vaguely remember something about it helping to relieve menopause symptoms.