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13 posts from March 2011

March 30, 2011

False Alarm

Yesterday, after much hemming and hawing, a near-nervous breakdown Sunday night (when I frantically emailed Peter and told him to cancel everything Monday a.m.) and a good night's sleep thanks to a bit of medicine (I never take stuff...but I needed sleep), I still found myself at the doctor's office.  Despite the fact that Peter did call and cancel (well, put on hold) the start of the radiation treatments, by 2 p.m. yesterday, I was nervously playing Words With Friends, waiting for yet another in-depth discussion with the Radiation Oncologist.  All things considered, it's amazing I made it that far.  However, getting there was made possible mostly due to the doctor's attitude.

Monday morning Peter called, talked to the receptionist and indicated I just couldn't move forward. He did this no questions asked, because he knew I was just too stressed.  His actions eased up my fears, until he mentioned that the doctor wasn't in Monday and would likely call me Tuesday a.m.   I alternated between ignoring the situation and worrying it to death for the rest of Monday.  By 10 a.m. Tuesday, there was no phone call and I assumed I was home-free. Wrong.

At 10:15, the phone rang, but I was mid-workout and couldn't get the call.  It was the Dr. R, the Radiation Oncologist and I naturally assumed the voicemail would be angry, confused or berating. After all, that is what I am used to with most of my doctors.  No, she just asked me to call when I could and told me to take care.  Hmm.

I wrote down all of my questions, got up the nerve, dialed the number and was put through to her at last. I noted that I was surely repeating myself, but we just didn't remember everything and had a few new questions.  I explained I was extremely nervous (okay, terrified) and she calmly said that not only was that normal, but in all likelihood I would find the entire scenario anti-climactic.  Due to my health (yes, it's actually quite good), she was hard-pressed to find any side effects that could truly plague me.  She wondered if I was still going to go through with the treatments, and I replied that I just didn't know. Instead of pressing me further, she offered that since we already had a 2:15 p.m. appointment scheduled, that we just come out a few minutes early, have another meeting with her, ask more questions if need be, see the treatment areas and then make a decision.  No pressure and either a yes or no would be fine with her.  

Nothing takes the winds of tension out of my sails like that:  not only having more time, but being reminded that it is my choice.  I opted for the extra time at the meeting and a few hours later, Peter and I were waiting in a room for her.  

We didn't end up having the tour, but she did go through every test and photo (exam photos) and bit of information about my situation piece by piece.  She was not pushy, yet reassuring at the same time, and there was, of course, the reminder that if anything happened, we would stop, take a break and reassess. The next thing I knew, I had changed into a gown and while I was not thrilled per se (who would be?), I was not nearly as frightened.  

Ten minutes later, I was walking back into 'the' room.  I was told I would have more measurements and my first treatment.  I laid back on the table (which really isn't that uncomfortable), put my arm in the rests provided and waited for the tech to slide me into place. Ten minutes of stilted conversation later, and she left the room and said we were starting.  

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I waited for a fantastical light show to occur and for beams to radiate down upon me.  A giant white leaf-like plate appeared on my left and I felt sure something was imminent.  A crazy production, like the Fremont Street Experience, or a wild Imax laser light show, played out in my head but didn't actually materialize.  The plate then disappeared and the x-ray machine was back.  Ten minutes later, the tech was back in the room and I was being adjusted slightly again.

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She departed, the white leaf appeared again and then the x-ray machine.  It was noisy, but nothing like I imagined and still, not much going on.  I finally imagined that not only had my breast begun to get very warm, but that I was already feeling fatigued from treatment.  Another ten minutes passed, the tech returned and announced that I was finished and:

"Now we are all set to start the treatments on Thursday!"

Huh?  I mentioned I thought we were starting today.  She looked at me oddly and said, "No, today was just for measurement purposes."

Oh.  All of that stress, all of that worry, wasting my "terrified" tweet AND blowing my one mocha/week rule as I was so freaked on the way to the appointment.  I hopped down, went back to the locker room, slathered on calendula anyway, changed and met up with Peter to relay the disappointing news:  I had only survived because nothing had happened.  He just shook his head and smiled.

The tech then returned with my schedule for the next 5 weeks.  They built in an extra two weeks in case of who knows what and also are starting a bit earlier than I hoped.  So,  I freaked a bit, as I'm not thrilled about extra daycare payments and having to drop poor Little Guy off at school at the crack of dawn.  I also noticed something that didn't hit me until later on:  the last appointment is scheduled for May 17.  

Now, I am only supposed to have 25 treatments starting Thursday morning.  I really hope this will be the case and I will be finished by May 4.  I want to be through with this and rested well before the 5K on May 15th.  Even if I'm not finished, I will absolutely, positively not do a treatment on May 17.  It would be the last visit, but I can't think of a more depressing way to spend our 14th wedding anniversary.  Out to dinner, yes...fun family activity, yes...in a hospital, even for a minute?  Nope, no way.

And now?  Well, I am still a bit stressed and still sure I may be making a mistake.  However, I have armed myself with every piece of knowledge available. I have 3 great all-natural and healing skin creams/gels/oils that (and a prescription cream) said to keep skin in pristine condition. I started incorporating extra arm exercises well over a week ago to prevent fibrosis and will be upping the massages (and manual lymph drainage).  Most importantly, I finally feel as though I have a doctor that cares and listens.  I am not a patient, but a partner in my care for a change.  I am looking forward to the treatments, like everything else with this scenario, to be over quickly and uneventfully, provided we both hold up our ends of the bargain.  I think I can handle that.

 

*I know, I know, I won't see or hear anything remotely exciting...but couldn't there at least be a movie or something?

 

 

March 25, 2011

NPR faded in and out on

the headphones.  I tried to focus on the story, but it's hard to grasp the gist when one hears but a few words of the story before the CHUNKA-CHUNKA-CHUNKA-click-click-click-CHUNKA-CHUNKA-CHUNKA of the MRI drowns out nearly everything, including the most basic thoughts of what one might make for dinner that night.

Wednesday morning was the scheduled time for my baseline MRI and simulation CT-scan.  Unlike my previous MRI experience, I was nervous, but not a complete and utter mess.  I only got lost once and that was due to Peter sending me to the wrong location while he parked.  I found the correct place easily, everyone was extremely nice, I had an entire locker room for my clothes (vs. a tiny old gym locker at the other place) and other than minor difficulties starting the i.v. for the contrast, all went well. 

I went into the room, nearly lost the feeling in my left arm due to vein-finding issues and a few minutes later, I was ready to go.  I know MRIs can be scary to some, but I almost found it cozy.  It's not uber-comfortable (and I had a nice red bumpy forehead from the head rest), but I was certainly warm enough (I love heated blankets) and easy enough to drift off during quiet times.  It's also a bit disconcerting to have oneself 'adjusted', though I was grateful that the tech thought to mention that she was adjusting body parts in the plural.  

The machine soon began its clicking and whirring.  Unlike the previous MRI, the tech kept me fully abreast of how long each cycle would last and would do a general check to make sure I was not freaking out (or completely deaf from the din?).  Before I knew it, the contrast was flowing through the vein in my left arm and the test was nearly over.  In fact, the only odd moment occurred when the tech asked if I was having the MRI for a new diagnosis.

*Shudder*

I gave her the benefit of the doubt and just indicated it was a pre-radiation baseline.  She accepted that easily and soon I was de-sticking myself from the headrest and heading back to my semi-luxorious changing area and off to do the CT simulation.  Well, after the tech instructed Peter to take me out to lunch after the entire ordeal was over (thank you, tech lady).

Quite honestly, the simulation was much more disconcerting than the MRI.  I have been wavering on my decision to do radiation (you are shocked, really?) and this did not help matters.  Moving me about every 5 seconds ("don't help, let us move you!"), taping up my right breast and then ripping off the tape (that was already stuck on like a 3 day old band-aid) at the end  ("Oh, did that tickle?"..."No, it HURT!).  It was as though she thought I wouldn't feel a thing.  Then the forcing of my right arm into quite the awkward position for a good 20 minutes.  I still managed to sneak a few moments of sleep (seriously, I can nap anywhere now...) and just when I thought it might never end, it was all over.

We waited out in the (simple but comfortable and not underground) lobby for a few minutes.  The imaging tech walked out with a card indicating that my first session would be next Tuesday.  I'm scheduled for x-rays, a consult and the initial treatment.  My next session would then be delayed until Thursday.  Five weeks after I start, it will be complete, two full weeks shorter than where I received my first opinion.

I was quite hesitant to mention much about the day, as until this afternoon, no results had been sent my way.  Peter thought I should "just call", but I tried that last October to get results from a different test and just thinking about that conversation gives me chills today.  Finally, he called on my behest and was told the doctor would call "me" back soon.  She did and she left a message...

"I'm calling about your results which were all negative and good."

When I called her back, she went so far as to say the results were "pristine"...which is what I like to hear.  She had made it very clear that she did not expect anything, but regardless, negative results are almost always reassuring.

Then she asked, "See you on Tuesday?"

"Um, yeah," I mumbled.

I just couldn't get anything else out.  I've been second-guessing* this to death and the confirmation of the MRI results makes me feel more ambivalent.  Even though I know (theoretically) there could be a microscopic stray cell, I still wonder if I am going overboard.  I've been ready to call it quits for the past day, but decided to hold off on a final decision until Monday.  I'll get a few more questions answered and try to ensure that even if this is needless, it won't affect me (negatively) in the long run.  And, yes, I am 'prepping' as though I am going through with the treatments.  I'm incorporating extra arm stretches into my workouts and have begun emu oil and calendula cream applications to keep my skin in the best shape possible.  I just really can't wait until my only decision frets are over what posts to bid on....

 

*It's what I do best...

{this moment}

{this moment} - A Friday ritual. One photos- no words - capturing a moment from the week. One simple, special, extraordinary moment. A moment I want to pause, savor and remember. If you're inspired to do the same, leave a link to your 'moment(s)' in the comments for all to find and see.

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(We were lucky enough to steal the Salty Pup for a few hours today, as Captain Salty Dog is still on the mend due to illness two weeks ago.  Get well soon Captain and thanks for letting us borrow the wee one!)   Idea courtesy of Soulemama.

 

 

March 22, 2011

From 0 to 9

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Img012 Img011 in the blink of an eye.  Kelsey-Delsey, as even Nicholas now calls her, has been a huge part of our lives for nearly a decade.  Our little firecracker, born while on a medevac (which extended into an authorized departure) keeps our lives exciting at every turn.  She has her own unique sensibilities and has become quite 20080323-15 the leader without even realizing it.  While it may be her birthday, she is one our sweetest gifts ever.  From her drawings ("Just for you!") to her spontaneous sentiments ("I love you and knew you needed a hug."), she has won our hearts many times over.  

Happy 9th Birthday to our sweet nugget, Kelsey D.! 

 

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  20100328-15           Din_2010_164

  





 

March 20, 2011

The mailbox has become

the bane of my existence.  Between EOBs (explanation of benefits) and bills, I had all but stopped checking the mail.  I used to curse the junk mail we received and now am happy when fliers are the only items stuffing the box.

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The latest item to arrive and frustrate me is shown above.  As some of you may recall, I ranted a bit on Facebook a few weeks ago when we inexplicably received a bill from the hospital for $3,095. Without a doubt, we simply won't pay that kind of money for a surgery that we had been told would be covered in full by insurance.  Peter called the hospital, insurance company,  insurance company again and then the hospital a second time.  He blew a good two hours in one afternoon on this mess and WE figured out the issue, after being given misinformation by both the hospital and the insurance company.

The problem?  The surgery (quite clearly) was billed as same day surgery or outpatient.  I am sure there are souls who are stronger than I am, but there is no way on God's green earth that this was a same day surgery for me.  I could barely stand up to get to the bathroom Thursday night and while I steadily improved on Friday, I was still iffy about going home in the early afternoon.  

When we received the bill (on a weekend, of course), I promptly freaked out.  Peter, a bit more calm was sure there was an error and immediately called the hospital on Monday.  He asked what the charges stemmed from and was told we owed a certain percentage of the fees due to part of the claim being denied.  He asked why and was told to call our insurance company.

He then called the insurance company.  He explained the situation again and the rep said the charges were due to it being our responsibility to pay a certain percentage of the bill.  The percentage did not match up with anything we had seen in our benefits book.  He hung up, we reviewed the bill again and the whole same day surgery* thing suddenly clicked.  While, of course the surgery took place all in one day, it was not, according to their definition, a same day surgery, but inpatient.  He called the insurance company back explained the situation again.  This time the agent tried to tell him that the charges were due to us owing 30% of agents and drugs used (yes, in 2011, surgery took place in 2010).    Peter explained that according to the benefits package, that was not the case, we would simply owe a co-pay.  

The rep then said, "Well, no, you do owe that amount."  Peter asked if it was because it was billed as outpatient.  The answer was yes and then Peter explained that it was not outpatient surgery, and therefore, we must not owe any money.  The response?

"Oh, yeah, you are right!" replied Customer Service Rep #2.

He then regaled the rep with all details of my stay and the rep replied that the hospital had filed incorrectly (really??) and needed to refile the bill with them.  Upon refiling, it would show that we would only owe the co-pay for the hospital stay.

Peter promptly called the hospital and spent a good 20 minutes discussing this latest disaster.  He was told they would immediately refile the claim, and that we were correct, we should not owe the money as I definitely stayed overnight.

Fast forward one month.

I checked the mailbox early Thursday afternoon, as we were on a roll.  For three days IN A ROW, we had not received one bill nor anything to do with my surgery.  Whee!  My excitement immediately subsided when I opened up a rather thick envelope from the hospital.  I opened it up, reviewed the bill and nearly lost my lunch.  It was clear from the bill that not only had nothing changed, but they had not even refiled the bill.

Peter called ASAP, since I have delegated all of these dealings to him.  I have neither the patience nor the inability to either not scream at them or cry uncontrollably after 5 minutes.  His conversation with the hospital.

Peter says, "I am calling because it looks like you didn't refile the bill for my wife's surgery."

CS Rep Y, "No, we didn't."

Peter, "Why not?"

CS Rep Y, "We checked the computer and it said it was outpatient surgery."

Peter, "I already discussed this with you a month ago.  CS Rep X made notes, agreed it was wrong and you were to refile."

CS Rep Y, "Yes, but the computer said it was same-day surgery."

Peter, "And I told you it wasn't!"

CS Rep Y, "Yes, but the computer says..."

Peter, "Let me speak with a supervisor."

Apparently, someone incorrectly logged in that I had checked in at 7:00 a.m. and checked out at 3:17 p.m.  I'm not sure I remembered my own name at 3:17 p.m. or perhaps that was when I was busy vomiting up ice chips (maybe a date-stamped photo would help?).  Regardless, I most definitely did not check out at that point in time.

Now that someone is aware (for the second time) that the computer was wrong, the billing department has to contact God knows how many departments to ensure that I did in fact stay more than 24 hours. Once this is proven, they will then refile the surgery as inpatient, the charges should drop off and we will only owe co-pays.

We have now wasted a good 5 hours (total) on ONE bill from the hospital.  We have also had other incorrect bills from them that we are still working on, but not quite as onerous (incorrectly billed $350 for a PET scan & MRI).  If nothing else, this entire experience has taught me that no matter how much one prepares and reads the guidelines, there are still many needless and anxiety-inducing screw-ups.

In fact, it is one of the reasons that Peter is checking and double-checking that the MRI for this week and the radiation treatment are pre-certified.  We are also looking at the cost of the radiation, as we are required to pay 10% of the allowance, but 10% of what?  This entire experience has been nothing but a costly, wallet-draining nightmare and I just don't know how much more I can handle.

Right about now, we were supposed to be looking forward to Peter's 3rd R&R.  Instead, we are trying to figure out if we want to swallow the cost of the radiation.  Not only is there the cost of the treatments, but incidentals such as a possible boatload of daycare.  No one knows how I will react, so there may be additional doctor visits and Peter may have to take time to care for the kids in the afternoon if I am too exhausted.  

Instead of worrying about what places we would visit in Iceland and Italy on our (now non-existent) R&R, I am living with a permanent knot in my stomach over an expense that I am not even 100% sure is worth it.   Instead of planning our pack-out, I am stressing over whether MED will approve me to go overseas next year.  My doctors have no issue with it (even the cranky ones), but I still worry.  We aren't even committing to a beach vacation (yet) with the kids this summer, as I am too nervous about expenses** to plan anything (the implant exchange billing issue is also still unresolved). 

In the scheme of things it may seem petty, but when we are hit with new or unexpected expenses week after week, it gets very tiresome.  You are told you "have" to do treatments, but no one really gets that you don't just pay a physical price. You also pay a mental, emotional and generally, very costly, financial price, even with 'great' insurance.  

Ironically, my biggest worry is not about money, but about my physical health.  Last week, I registered to be Kelsey's buddy runner for her GOTR 5K.  It occurs two weeks after my treatments would end, meaning the bulk of my training would be while I am undergoing radiation.  I know that things might be absolutely fine and I just bounce back...and I really hope that is the case.  I already feel like we have let the kids down in so many respects this year and I just can't heap more disappointment on any of them.

 

 *what can I say, we are tired of this mess, it just didn't click right away and we just assumed it would be billed correctly...silly us.

** this is not to imply anything other than a situation like this, with so many financial unknowns, can stress one beyond belief.  Even when you think everything is covered and you have plenty of savings, there are still huge hits that can be taken and after a while, you simply begin to constantly fear the worst.

March 18, 2011

{these moments}

{these moments} - A Friday ritual. Three photos - no words - capturing moments from the week. Three simple, special, extraordinary moments. Moments I want to pause, savor and remember. If you're inspired to do the same, leave a link to your 'moment(s)' in the comments for all to find and see.

 

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       Idea courtesy of Soulemama.

 

 

 

March 17, 2011

So, I'm either brilliant and a bit

brave or I'm off my rocker and about to make things worse.  We had a second opinion with a radiation oncologist today.  I had been given a recommendation for a particular person at the same hospital, however, she is no longer with the group.  Despite that small setback, the RO we were to meet with had experience at one of the top cancer centers in the nation and her current hospital recently became a part of a larger, well-reknowned hospital group.   We threw caution to the wind and kept the appointment.  I had no idea what to expect and feared the worst, given last week's appointment.

I was grateful to be pleasantly surprised.  

We were first met by a nurse who reviewed my basic information.  She touched on everything from medications to my recent weight loss (yes, that 13 lbs since last October was intentional).  She was very kind, not at all pushy and left us alone to review departmental information and guidelines while we waited for the doctor.  

After a few minutes, she stepped into the room and greeted us.  With a rather pixie-like figure, she was not nearly as forbidding as her picture led me to believe.  She asked for a brief history, though she had gotten a bit of information from *the* oncologist and was curious as to why we were there at this point in time.  I explained how I simply couldn't make a decision regarding radiation.  Everything from the way my skin might react to the length of time and side effects worried me.  More importantly, given that I had been told I was in a "grey area" I just wasn't sure how to proceed.

She admitted that I was indeed in a grey area (score!).   She then went on to indicate how despite the fact that I had the close margins with the DCIS (vs. the invasive cancer), this was actually a bit more...worrisome.  It was just too close to the chest wall and could easily turn into something else, given time..or, it may not.  However, the five weeks of radiation would bring down the chance of recurrence significantly and would nearly guarantee that my natural lifespan would not be affected. Not that I have any doubt it would be affected, but something about the way she spoke was far less frightening and more motivating than our visit to the last RO in late November.

Instead of fearing the treatment, especially given the shorter length of time, I felt as though it might be doable.  She reassured rather than bullied and reiterated that due to my health and lifestyle, I was unlikely to be affected by the treatment in the long run. She offered that side effects such as exhaustion could occur, but would not likely be debilitating.

She did not scare me and did not talk down to me.  She didn't stare at me with bug eyes, nor did she look at me like I was nuts.  We also touched on the Tamoxifen issue and while she (of course) encouraged it, she listened to my fears and offered that perhaps a visit to a hematologist might be in order.  Given that I don't fit the profile of those who normally have clotting issues on Tamoxifen, a hemotologist could give me a truly thorough work-up that could put my fears at rest regarding an inherited disorder.

Did I mention she also listened to the entire sordid story of my mother's death?  She didn't just blow me off, but wanted to know all of the details and was appropriately horrified at the lack of care Mom received just prior to her last day.  Why my own oncologist couldn't think to do that is beyond me. The fact that the RO took that much time to engender my trust today went a very long way.

Peter and I somewhat silently discussed as the appointment neared a close and realized perhaps it might not be so bad.  It's not what I want to do, but especially given my concerns about Tamoxifen (and who knows if I will tolerate it?), this will give an extra measure of cover if the drug does not work.  The length of time is better, the location is much nicer and the doctor worked so hard to ensure that I was informed, but not scared.  I felt like I was actually making a rational decision versus being frightened into something that would just make me worse rather than better.

We are still working on the financials, as we realize we have to have everything insurance-related settled before we start this procedure on March 28. (I simply can't handle any more scary you-know-what bills showing up in the mailbox, so we are certifying everything in triplicate.) I also have a pre-treatment MRI next week, which will just ensure that there isn't anything to be concerned about.  The doctor is sure nothing will show up, but always does this as a failsafe.  She was even thoughtful enough to be concerned about whether I could tolerate the MRI....all things considered, that will be a cakewalk.

So, there we have it.  I am either brilliantly killing off some stray cell that managed to escape the butcher's knife or I am brutalizing my skin and what's left of my breast for no good reason.  I suppose the only good news is that I will likely never know.  I think in this case, that's probably for the best, as I'm already quaking in my boots about this plan and whether it's truly right for me...

 

 

March 14, 2011

I had worried last Thursday

to death for many weeks.  It was the day of my scheduled follow-up with my oncologist and to say I was not looking forward to it was a complete and utter understatement.  I knew she was not thrilled that I had not started 'tox-ing' myself (a.k.a. taking Tamoxifen), and had a feeling I would hear about it.

I went back and forth on whether or not to even keep the appointment since there is nothing I enjoy more than being berated about doing not doing something that I consider to be extremely harmful to my body. However, Pete said it was best to keep said appointment, in the hopes that she would at least perform a blood test telling me if the Tamoxifen would work or not (whether or not I metabolize it).  We were also hoping that she might offer a lower dose option.  Studies have shown that smaller doses inhibit breast cell cancer growth with lessened side effects.

She didn't do the test, but there was plenty of berating.  Apparently, an oncologist's job is now, in my opinion, to belittle a person and make them feel like absolute cr*p.  Never mind that the person sitting in front of you (said oncologist) is trying to relay, perhaps through anger, but all the same, her fears.   Perhaps, just perhaps, she is also trying to indicate to you that you should be doing everything you can to encourage her without scare tactics and that you should try to gain her trust.

No, apparently, it's better to:

  • stare at her like she's nuts when she (or her dear husband) tries to explain why she fears said drug.
  • continue to stare at her like she's nuts when any mention of regrets about the way things have been handled thus far are mentioned
  • incorrectly state that she should have no fear of blood clots because she "took birth control pills for years"  (try two weeks, couldn't tolerate them)
  • state how you "have to be the bad cop" (gee, guess vinegar gets more flies than honey?)

To say it was an unpleasant experience would be the understatement of the year.  Peter seemed to feel she understood me in the end and was proud of my trembling, yet still semi-stiff upper lip.  There was also a change when I responded to her bad cop comment.  I shot back that I got it, it was "her job"...and she just stared at me, saying nothing, for the longest time.  

She then stood up and completely changed the topic by asking about the kids.  She did a quick exam, printed out a new prescription for a lower dose (the one coup of the day) and printed out a scrip for blood work (baseline liver enzymes and Vitamin D level), at my request.  Within minutes the awful appointment was over.

So, what will I do?  For now, I can't do a thing.  We are in the process of changing insurance companies and still haven't received our new prescription cards.  Then?  Well, I just don't know.  I am really caught between two worlds on this topic.  Part of me wants to cut her off completely and do everything on my own.  I would still see a breast surgeon for regular check-ups, but would refuse the medicine and further oncologist visits would thus not be necessary.

Sadly, part of me is still a bit of a wimp.  While I am 100% sure I will not have a recurrence, what if taking a small dose helped reduce my estrogen levels even further, thus preventing future issues?  Or am I doing enough on my own every day by watching what I eat, exercising like a mad woman, supplementing and avoiding known hazards?  

I'd like to obviously choose the option that gives me the most amount of control.  However, which is that?  

For now, I have a plan.  It does include starting the drug (after my other doctor checks my estrogen levels), but extremely slowly, so as to prevent adverse side effects coming too quickly or harshly.  It may not be exactly according to the oncologist's plan, but if I'm going to start this drug, it's my way or the highway.  I have to be comfortable and not just throw myself in 100% the first day.  

What will I do should side effects occur?  I realize that some may happen, not necessarily life-threatening, but not the most comfortable.  Acupuncture is a known treatment for side effects of Tamoxifen and I would start there.  I will not, however, do anything requiring more prescription drugs.  If I come close to needing antidepressants (depression can be a huge issue), the entire scenario will be seriously re-evaluated.   

I know it is entirely possible that I may be just fine.  I will likely have no issues, will not be depressed and will hopefully not gain 20 pounds.  In fact, it is one of the reasons I am glad I didn't start sooner. Instead of running headlong into another treatment, I gave myself time to heal, recover and get in much better shape.

I suppose there is also a third option and that would be finding a new doctor, one who actually listens and is more supportive.  I know it is a doctor's job to encourage what they feel is best for the patient, however, treating your patient like a petulant child is not going to get the desired results. I know the more I am pushed in a certain direction, the more I back away, especially when my fears are simply discounted like yesterday's news.

The only issue? Where on earth do I find such an oncologist?  Do they exist or will it forever be an unrealized dream of mine to find someone* who can work with me instead of just making me feel small and as though my concerns are not valid?  Only time will tell, I suppose... 

 

 

*If anyone knows of such a person in the VA/DC area, I would love to hear your thoughts....

March 07, 2011

Sorry, wrong blog...

Today I headed to the gym after dropping the Little Guy off at Montessori.  Unless I have something pressing, such as Stitch & Bitch or *shudder* a doctor's appointment, my normal routine is to wake up, throw on exercise garb (instant comfort) and get moving so I can...get moving.  

While I love to walk outdoors, the gym has its purpose and today was, if nothing else, a weight check and a bit of an extra workout.  As I passed through the front door, I realized that this morning was also the perfect opportunity to restart the Couch to 5K. It had been over 1.5 weeks since my last attempt and I needed to get started as I now officially have a goal:  a 5K on May 15.

Kelsey is participating in Girls on the Run this semester and will participate in said race.  In order to run, she needs to have a running buddy and that would preferably be one of her parental units.  She needs a buddy, I need a goal...it's a match made in heaven.  Now that I have committed to this race, though I will have to work twice as hard to ensure she doesn't leave me in the dust.  Kels doesn't start her training until next Tuesday, so luckily I have a whole week's head start.

Neither the treadmill nor the app gave me any difficulties today and before I knew it, I was halfway through the session, nearly where I stopped in a bit of pain two weeks ago.  I headed into the 3rd jog session a bit nervous, but sailed through with no pain and feeling better than ever...until I read a particular message.

Since my walking pace was a bit slower, I figured I would check email.  I immediately noticed an unfamiliar address and read the message with quite a bit of curiosity.  Unlike the other notes, this was a request to publish a guest post on the blog.  The result would be a compelling article related to how the author is:

"...very passionate about maximizing cancer patient's mental and physical health and how best to cope with terminal illness. "

I'm sorry.  TERMINAL ILLNESS?

Now, granted, I have not written back to the requester to get more information, so perhaps I have something wrong.  However, other articles by him (if he is who he says he is) relate to traumatic events that other blog authors have been through.  I am assuming that he is under the impression that I have a terminal illness....so let's clear something up, right here, right now:  

I'm not dying.  So not to disappoint the would-be guest poster, but not going to have a blurb on an issue that is unrelated to me.  I'm fairly sure it would scare the pants off readers who might think I suddenly had received a spate of bad news.  

I had an issue, said issue was resolved surgically and as my doctors noted (and I gleefully watched them eat crow), the problem was far less serious than originally thought. However, even the original diagnosis never, EVER went there.  Not once has the matter been touched upon and the only conversations at recent appointments have circled around the chance of recurrence.  There is no mention of anything beyond that, because it is not going to happen.   I suppose other things could happen, but there is no indication that there is a single cancer cell left inside my body nor do I believe I will have a recurrence.

I know this is where I should indicate how grateful I am that things aren't worse, but frankly, since it shouldn't have happened in the first place, I'm not there yet.  I'm still annoyed at the entire situation and doing my best to ensure nothing like this ever happens again.  While I know I have been a bit mopey and whiney at times (trust me, it just happens in these scenarios), I didn't think I had ever given the impression that things were in more dire straits.  If I did, I wholeheartedly apologize, as it simply isn't the case.  I may be terminally cranky, but that's about it and even that can be generally cured with a good cup of coffee or a hug from the LG.

Please understand that I am not making light of the situation.  Like anyone who has faced a scary situation, this scenario did make me focus a tiny bit (in the beginning) on my own mortality.  However, then I read something interesting:  It was the notion by a person that if he had a fatal disease,  his fate was sealed and he knew exactly what would kill him.  However, in the example given, the person had been thriving for over several years since the diagnosis and was in incredibly good health.

So how on earth does one know they are going to die just because of a few words from a doctor?  You don't, plain and simple.  Only if one were truly extremely sick would there be a remotely logical reason for indicating that one's fate was sealed (and even then, as I have witnessed, miracles do happen).  

My fate is not sealed, not to my knowledge.  Even if I were to ever be given such bad news (which I won't), it wouldn't be the end of anything, I'd just need a new course of action to fix the problem.  

I won't dwell on the topic (it's not a fun thing to do), but wanted to clear that issue up, lest there be any confusion.  I am just an ordinary person who gets up and goes about her day like everybody else.  I worry about getting the kids off to school, the state of the world, birthdays coming up, what to make for dinner...the usual.  Dying?  I think I have many decades before that one will be an issue.

Oh, and the first session of the C25K today?  Utterly awesome...

 

 

 

 

March 06, 2011

The Blip

Despite my promise that I would not forego weekly therapeutic massages due to either cost considerations or time issues, I ended up missing my session last week.  Perhaps due to the harder workouts, extra work around the house or picking up the LG the wrong way one time too many, I ended up with quite a bit of lower back pain and realized I needed a session at the Teal Center before things became worse.

It was one of those wonderful massages, a combination of manual lymph drainage, stretches and deep muscle work that had me drifting and dozing nearly the entire time.  I chatted with Jean,  the day's massage therapist and with another who had worked on me in the past while paying, and was glad to hear them say how far I had come.  In fact, Jean said she was amazed by my range of motion and Lucille (who did my pre-surgical massage and several follow-ups) chimed in that she felt the same way.  I mentioned how I didn't see how I could have gotten through this mess without therapy of some sort, and they noted that they wished more people understood the connection between the mind and body when dealing with this sort of scenario (hint: surgeons acknowledging the benefits would be a huge help!).  It's not just being told to take medicine or have a surgical procedure, but working on healing your body in a way that relieves stress and lowers the risk of post-surgical side effects.

I thought about this as we were talking and we all wondered why more people don't take advantage of such offerings.  Do they not know about them?  Do they think the benefits are just hooey?  Is it too expensive to contemplate with all of the other expenses involved?  I know I had begun to think that and thus, we recently switched our insurance from BCBS to the FSBP, which covers 30 massages a year at $40/session.  While we were not entirely unhappy with BCBS, that's a savings of $1200 that we can't afford not to take.  Combine the insurance coverage with the Teal Center's oncology discount and I will be paying approximately $25 for a one hour session for 40 weeks of the year.  

While trying to get through these past few months, there is one thing that I have avoided and too much time on sites that focus specifically on my type of cancer.  Yes, I have researched the topic and found the information useful, but I loathe pigeonholing myself.  I do not consider myself a member of any 'club' nor do I feel as though my life has to change extremely because of this scenario.  I find when I focus on my type that I end up stressing myself out more.  Therefore I have decided that those services and information sites that are most useful to me are those that focus on overall health and wellness.

In light of that, I am creating a new selective blogroll.  The items included will be those that have helped me through these past few months, have helped me in my healing or could be useful to someone else going through a similar experience, as with the links to Camp Kesem and Lotsa Helping Hands (and many thanks to Jill, again, for all of her work with my LHH group!).  I am not taking credit for finding everything myself, as many were sent to me, or introduced to me by friends, to include Daily Mile.

What does that have to do with my situation?  When I started on the road to recovery, I wanted a way to track my workouts.  While I had a decent iPod app, I wanted a more interactive, user-friendly method of uploading my stats from any location.  I noticed that a friend utilized Daily Mile and each day had her daily workouts, from yoga to running pop-up.  The site would allow me to sync my Garmin Forerunner (easy upload of walk/run stats) and I was sold.  No more being limited to the iMac or iPhone for updating purposes and so easy to see exactly where I am with my workouts.  

Even better, they offer a widget for blogs.  My workouts (or not, as was the case on Friday) are displayed in one of three layouts and a good reminder of my daily status.  My friend, Heather, an avid runner, recently posted on this very topic.  Whether you blog or not, those of you who are inspired to get moving (or those who are, but not tracking it) should consider utilizing the widget and/or simply post your updates on Daily Mile.  There is nothing more motivating than watching your friends daily stats (or yours) pop up and knowing that each workout is a step towards a happier, healthier you.

The two remaining links on the currently (very short & sweet) blog roll are more related to my original diagnosis.  Being Cancer, is a compilation of blogs and websites written by those who have been there, done that.  While it may be sorted by type, it excludes nothing and can be an excellent resource, as can Crazy, Sexy Cancer.

Not long after I was diagnosed, I was stressing (okay, still am) over treatment issues.  I wrote to a friend in California that I had met through my Holistic Moms group.  She recommended a website started by Kris Carr, who had to deal with a different, but very scary type of cancer and is thriving today primarily due to lifestyle changes.  I'm not going to go through her whole history (it's on her site), but suffice it to say, Kris is an inspiration to anyone in remotely similar circumstances.  While I am not yet the epitome of perfect eating, we have much improved our diets even over what we were doing in California.  I was even lucky enough to meet her at a recent Borders book signing and have a photo snapped (not posted due to me being 4 days post-op and looking more like 4 hours post-op!).

We are not vegan, but have cut down even more on meat and cheese (to reduce my intake of estrogen) and, of course, watch the amounts.  Even prior to learning about CSC, we had acquired a kick-butt blender and nary a day goes by without a wheatgrass smoothie (also includes strawberries, bananas, pineapple and sometimes steel cut oats for an extra oomph).   The kids (okay, the younger two) were already huge smoothie fans, so they make for easy and healthy morning breakfast treats.  

I don't have a set limit for this list, but would like to beef it up a bit.  If you have a link that you think would be perfect, please feel free to comment and/or send it my way via email.  Oh, and why the "blip"?  Well, in the end, that is what this experience will be...nothing more than a blip on my radar of life.  Not to diminish any good, but the bad parts are not something I wish to dwell on and hopefully, will continue to be few and far between.

 

 

 

March 04, 2011

{this moment}

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. If you're inspired to do the same, leave a link to your 'moment' in the comments for all to find and see.

 

Photo-3

No walk is complete without a few of his favorite things.   Idea courtesy of Soulemama.

 

One likes to assume

that one knows her children.  She knows what they like to eat, what they like to wear, whether they are morning kids or night owls.  She knows when they are being honest and understands where they are coming from when they stretch the truth a tad.  More importantly, she would like to think she knows her kids inside and out, so much so that she can predict the exact outcome of a distressing situation on her children.

You know, such as when one parent is deployed overseas for a year and the other is diagnosed with two types of what could be a nasty cancer.  Even the best parent in the world (not making implications), might be so overwhelmed with decisions, options and stress that she somehow doesn't notice exactly how her child is affected.  

It suddenly occurred to me today that perhaps I had done that.  Perhaps I had made a huge mistake or at least been a tad negligent in areas regarding the mental/emotional effects of this whole scenario on the kids.  They have not seen therapists, did not want to participate in support groups or related family potlucks and we had no desire to push them or go ourselves.

We haven't been ignoring the situation, but we have always been a bit more...laid-back with the kids.  We chat openly about anything (yes, anything) when they need to, but we don't push topics that might make them uncomfortable.  They know they can ask us about anything and while we do have talks, we don't go overboard.  I was actually thrilled when Caitlin found out about my diagnosis by accident.

Not only didn't I have to sit her down (or worse, both of us), I think she took the news far more in stride than if we had a face-to-face.  She digested everything in her own time and while she might have a been a tad bit perturbed, I think this was far easier on all of us.

We really didn't say much at all to Kelsey other than a basic explanation that I needed surgery.  I wasn't "sick" sick, I was just not as healthy as I could be and hopefully the surgery would correct that. When I finally got around to saying something to Nick about needing to see the doctor, his response was, "Are you going to the hostibal?  Are you going to have a surgery?  I can fix you!"  He then proceeded to find a toy saw and, well, let's just say he had an amazingly accurate idea of what was going to happen.  He wasn't frightened or upset, just very matter-of-fact.

I realized today when I received an email from a friend that it had been ages since we discussed 'it'. Things have been so much more normal lately, that there really hasn't been much to say.  In fact, the most discussion was probably a look I shot at Cait last week while driving when an ad related to my previous condition came on the radio.  She looked at me, changed the channel at lightening speed and we went back to our prior topic of conversation.

The email was concerning a sleep away* camp.  Though we are supposed to be planning Kelsey's birthday party (desperately need ideas for every aspect), I am also already looking forward to the summer.  We are hoping for lots of sailing, swimming and just plain fun, but camps are also in the picture.  Kelsey has requested both animal and nature camp, whereas Cait will be thrilled with one week of camp at the animal shelter in Alexandria.   We hadn't really thought of much more, so I was quite interested to read about the camp in the note.

It is  a camp for kids whose parents have dealt with my issue in any manner of speaking. Whether they have cancer, had it, are in remission...all are eligible.  I originally thought it was just on the west coast, but turns out there are many locations throughout the country and they run through the end of the summer.  It appears to be a great opportunity and I wondered if perhaps my kids needed this more than I thought? The deadline for registration was not far off and I quickly shot off a note to Pete and to someone else who might be considered a confidant for Cait, if no one else.

After a bit of discussion, we decided in all likelihood we would not go for the camp.  If nothing else, considering that I have not been through as much as I could have been (no chemo/no radiation**/good diagnosis), it seemed like perhaps it was best to save those spots for other kids who have really been through much more.  However, even after conferring quite a bit between the three of us, I realized I should still give Cait, if not both girls, the option of attending.

I mentioned it to her this afternoon and she asked for more information.  I explained the details I had gleaned from the website and while she said it sounded like a great camp, she just didn't think she needed it.  After all, she was really fine.  I wondered aloud if that was truly the case and she just looked at me and asked me what I meant.

I indicated that I just wanted to be 1000% sure that I was not ignoring her needs or pretending that she was fine when she was really quite worried.  Cait just looked at me, half-laughed and shook her head.

"Mom, I'm fine.  Really, I'm fine.  Yes, I was bit concerned in the beginning, but I knew you'd pull through!"

Oh.  And with that, it will be shelter camp for Cait, shelter & animal camp for Kelsey and lots of sailing, swimming and beach time for the rest of us.  However, I will, as long we are in the area, keep the other camp in the back of my mind, whether for us or someone else.  I know all too well that stressors can pop up any time, and it never hurts to have something in place.  Meanwhile...I'm still grinning about the pulling through bit.  Classic Cait...she always has just the right words for the situation!

 

*If you know anyone who might benefit, please pass along as the registration for the DC area camp is April 1.  Many thanks to Christy for sending me the link!

**Sigh, someday we will figure this one out...still on the table, still no decision.

 

March 02, 2011

A Man Among Men

One week ago, I was in a bit of a slump.  While my overall mood was brightening a bit each and every day, I was not yet myself.  I felt weighed down by recent events and as hard as I tried, I couldn't rid myself of the feeling that it was as though my legs were coated in a light layer of lead.  I was still slightly numb from the past few months and simply couldn't grasp and hold onto the 'normal' feeling that I so desperately desired.

While it was no longer a struggle to get out of bed, I still had collisions of anxiety and nerves that would hit just hard enough to send me running to the nearest porcelain god.  Was it trying to to do everything once again (I'm not, it just sometimes feels that way) and the fact that I am working so hard to make myself fit, but don't feel like I'm ever going to hit that 'perfect' point?

One week ago tonight, I had a bit of a meltdown.  I say "a bit" as try as I might, I simply couldn't gather the steam as I had in the past.  Yes, I was still upset about the surgeries and the way I looked, but the anger was not coming as quickly or as strongly as I had previously experienced. I felt as though the more 'normal' my life became, the fewer arguments I had regarding my unhappiness.  I was failing miserably at arguing about Tamoxifen or radiation since Peter doesn't necessarily disagree with me.

The meltdown actually, oddly enough, stemmed from a Facebook status update Peter had typed that morning.  He typed the following words and I melted the first time I read them:

‎19 years...it has been 19 years since the day I first saw the woman who would one day be my wife. We were only 19 then, which means we have spent half of our lives together. Seeing her then for the first time, I couldn't have predicted how I would spend the next half of my life, but I'm glad I got to spend it with her! Love ya babe!

Who wouldn't swoon the minute the words jumped out?  I couldn't formulate an appropriate response and ended up finally replying, "You, too!".  Why were the words so hard to come by?  With the exception of my hair being better these days (yes, really), I was instantly thrust into the past.  My body at that time was younger, leaner and despite my penchant for sodas and Pizza Hut personal pan pizzas, healthier.  There was no hint of the troubles to come nor how our lives would change so dramatically.  Granted, we had yet to meet and were not even remotely looking ahead to graduation, much less a house, globe-trotting career (on Peter's part), 3 children and, well, life in general.  

The status update kept me going and thinking all day long.  I couldn't put the thought out of my mind that Peter could have saved himself months of misery (my word, not his) had he simply ignored me 19 years ago.  He could be happily married to someone who wasn't dragging him down, altering his career course and making him fret more than he should on a daily basis.  By the time the kids were in bed, the meltdown began.

I couldn't muster the strength I needed and Peter easily held his ground.  I had not ruined anything, my body was fine and I needed to quit worrying.  I kept pounding away, though, primarily at the way my body felt.  A small part of me wanted to simply explain my true fears, that somehow he also felt that I was now far less than perfect and he just wasn't being honest, yet I couldn't bring myself to say it.  Finally, as I felt he just couldn't take the same old argument anymore, I brought up the Facebook mention.  I looked at him and asked how on earth he could love anyone who looked like I did, how was it possible that he didn't cringe just looking at me.  After all, I couldn't look in the mirror...how could he feel as though I was worth having?

He stood up and just prior to embracing me, stated

(insert most delicious, yet loving 'sweet nothing' that your spouse/partner/husband/wife has ever EVER said to you at the moment you most needed to hear it)

and it was as though the years melted away.  Then he remarked how the surgery didn't have to be an ending, but perhaps this could be a new voyage of discovery for us.  

He didn't walk away, didn't leave, didn't reject me.  Any time over the past 8 months he could have opted to make a different decision.  After all, I was in full agreement with his choice to spend a year in Baghdad.  I knew that it was not the ideal scenario for a happily married man and yet I never worried that he would stray.  The time apart didn't hurt us.  Yes, we were both sleep-deprived and stressed, but he needed me as much as I needed him.  We talked more than we had in ages (if possible) and grew closer despite the thousands of miles between us.  As my friend, Jill, poignantly pointed out in her post yesterday, one can't ignore the fact that things can and do happen.

Then he came home as my world was caving in.  He took over most of the responsibilities with the kids and house, made nearly every appointment for me and tried to better any aspect of our lives that could be considered remotely unhealthy.  He refuted all of my arguments regarding everything from my guilt over the circumstances to my assurances that our lives would never be the same because of me.  He had reason more than ever to be completely unhappy and yet he reaffirmed his love for me on a daily basis.  

In the end, when I thought I might never feel normal, never feel like baring my soul (or anything else, for that matter), he enlightened me.  He let me know that not only was he not frightened or angry at the changes, but that they could perhaps be new and exciting, instead of scary and different. He knew I would need time to realize that my body might not be the same, but that not everything had to change.  He held me when I cried, slept by my side even when nothing was comfortable but the couch and never wavered in his allegiance to me.  

I also had no idea how I would spend the past 19 years when I was but 19, but am quite sure of how I will spend the next 38 plus...happily ever after, no matter what else comes our way.