Resolutions

January 4, 2011 10 Comments

for the new year are not my strong suit.  It only takes one seriously freezing morning to quell my desire to continue my new exercise plan or a fabulous meal out (with select 'forbidden' food) to quash my good intentions of a stricter diet. I was going to resolve not to resolve (as many wise people do) and then fate intervened.

Remember that guinea pig post a few weeks ago?  I was moping and griping about me having to be one of sorts, as the doctors didn't seem to have any experience dealing with someone who has had my combination of issues.  Well, we finally met with the gatroenterologist (or Dr. K.) on December 23rd (a great pre-Christmas Eve treat!) and guess what?!

I was right. Oh, the suck, I was 100% correct.  The doctor of the day indicated that I would make a "fabulous case study" and that they would likely never find someone else who had already been through cholestasis of the pregnancy, then not, then BC and now dealing with medication issues.  He did say that it was an excellent idea to have met with him first, and then told me the only testing to prove whether (or not) I really had cholestasis was too invasive.  Apparently, he missed the memo where I have been subjected to fairly invasive stuff recently.  Too bad, as I was all geared up for a final yea or nay.

Alas, it will not happen, but he is "on my team" and given my excellent lab results, I should likely not have any issues.  He decided another ultrasound (of my liver this time…woot!) couldn't hurt to have as a baseline of sorts and sent me on my merry way.  While I am thrilled to have yet another doctor to add to ye old card directory, I am really weary of the not knowing.  Now, what on earth does that have to do with New Year's Resolutions?

Working backwards a bit:  I finally met with the doctor of functional medicine the day before I met with Dr. K.  We reviewed my history thoroughly, she confirmed that "the" surgery was the correct option (I'll not say a word here…sigh) but then went on to review the other treatments.  I was really more curious as to her assessment of radiation and Tamoxifen.  If you remember, I was recently (still am) up in the air on both.

Her answer?  If it was a choice, hands down take radiation over Tamoxifen any day.  She realized it likely was not necessarily an either/or and went on to mention that most patients she treated did not have a good experience with Tamoxifen.  Granted, I realize there are many who may be fine and thus didn't seek treatment, but it unnerved me a bit.  Then she offered that I might take a blood test and depending on the results, it may pinpoint whether Tamoxifen could be of assistance.

Since the breast surgeon so delicately ripped out four lymph nodes on my right side, I can never have blood drawn on that side again.  Guess where the good veins are?  Yup.  So, they dug deep on my left arm, found a vein, and ten minutes and a numb arm later had enough blood to measure my estrogen levels.  If one was found to be particularly out of whack, it could indicate an imbalance that could be helped by the Tamoxifen.  

Last week the test results arrived, and lo and behold my 16-alphahydroxyestrone level was through the roof.  It's considered, to simplify, a bad estrogen.  The good estrogen, 2-hydroxyestrone, level was just fine and the ratio of both was, well, okay.  However, those who tend to have higher levels of the 16 (as I call it for short), also could tend to have the same problems I did.  Naturally, I freaked.  The last thing I want is confirmation that this nasty drug (sorry, it is…I don't think anyone can argue that) might actually help me… if the side effects don't prevent me from taking it.

Along with the test results were ways in which I could lower the 16.  Mind you, I don't think I am doing a lot to increase the levels, so unfortunately it may be a predisposition for me.  However, am I doing absolutely everything to change them?  Well, I wasn't.   Here's where we get back to that resolution business.

After reading the test results (and for the love of God, why didn't my oncologist just order this test?) and pondering the information for several days, I have come to the conclusion that I cannot rule out that Tamoxifen, as dangerous as it is, might be worth a try.  However, there is an 'if':  I will consider giving it a go if I cannot somehow resolve this issue naturally.  Now, how to do that?

By creating a short list of resolutions that I must keep and ensure that I work on them every day for the next two months.  At the end of the two months, I will have my levels re-checked.  If there is little or no budge, then I may have to re-consider the *shudder* medication.  If there is a significant to huge decrease, then I might have justification for revamping things even more and possibly avoiding the medication entirely.

What will I try?

  • Giving up my glass o'vino.  I'll allow myself a few special occasions (yesterday and one other 'night out' next week), but other than that will just do away with that for the time being.
  • Exercise daily.  If nothing else, I will walk for a minimum of 35 minutes.  Yesterday found me hopping with no time to walk during the day, so I headed out at 9:50 p.m.  Late, but I got the walk in and felt all the better for it.  I've also re-started the couch to 5K, am signing up for a Pilates program, will be hitting the gym for the elliptical and will also try my hand at a Yoga class again.
  • Really, really watch what I eat, with veggies coming first.  I won't become a vegetarian overnight, but will work to limit the meat.  I'm already careful about the meats we buy and try to eat as much organic and all natural as possible (veggies, too).  It's not always possible, but I'll do what I can.
  • Limit my sugar intake.  I am working on substituting agave and maple syrups for sugar and upping the good spices for extra flavor.  I really am not a huge sugar nut, but it can't hurt to be more careful.
  • Watch my dairy intake.  I've never been a big milk drinker, though the brie does like to call my name (occasionally).  Other than half and half in my coffee (sorry, some things are off limits from limits), I won't be going nuts.  
  • Ensure that I am supplementing properly.  Though kale chips are my new favorite snack, the multivitamin, fish oil, turmeric, Flaxseed (ground) and Vitamin D supplements won't hurt.  I prefer to get my vitamins from my food, but the extra (in proper doses) has been put forth as a good idea by both my functional medicine m.d. and my oncologist.
  • Try to get a good night's sleep.  I'm a night owl, and as you have probably noticed, this is an area where I need work.  The past few months have been particularly difficult due to stress-related insomnia.  However, with Pete back at work and the kids in school, I'll be up at 7 a.m. at the latest and likely exhausted earlier than usual (we'll start that one tomorrow night).

I have probably missed something, but leaving it at that for now.  I have until February 28th and then it's all up to the testing gods.  Am I hoping for a miracle, that my estrogen somehow drops like a rock to a more acceptable level, making me some sort of wunderkind of resolutions?  Yes, that would be fabulous and I would throw a rockin' organic vegetarian mocktail party to celebrate.  

Do I expect that to happen?  No, quite honestly, I don't.  I would love for any sort of decrease, at least into an acceptable level (I am about 25 points above) and would do jumping judys and jacks for hours if that happened.  Even if I ended up taking the dreaded dose, at least I would have the knowledge that I could naturally effect some change and that would be a reward in and of itself.

The absolute worst case scenario?  My estrogen level drops the teeniest bit, I am still in scary-level land, but I drop a pant size or two and gain more muscle and flexibility.   I have a hard time finding the down side in those results.  

 

Filed under Uncategorized Tagged with , , , , ,

How I might be a guinea pig

December 1, 2010 3 Comments

IMG_5307 Thanks to the protocol my oncologist is proposing.  No, of course, she does not see it that way, but given my past history…where, oh, where to start?

Well, with semi-good news:  radiation is still on the table and not definite for the time being.  I am hugely undecided here, but have to say I am leaning towards not having it, some days more heavily than others. It turns out that there are two margins of concern (one was previously not mentioned as being an issue). One of the areas could still possibly have extra excision.  The other area, a medial margin, has nothing left to be excised (the bad news, apparently).  The good news?  They are not concerned about the invasive cancer on the medial margin, just the DCIS.  

Since the DCIS can only be found in the ducts and I am (insert small cry, tears miraculously reappear) now duct-less on the right side, one would think there would be less of a worry.  Unfortunately, it still puts me in the gray area, as recurrences can happen and of course, the doctors want to err on the side of caution.  Too bad the doctors and I are in differing camps regarding the definition of "erring on the side of caution."  

The really bad news?  The oncologist is ready to go full-force with the Tamoxifen.  I have zero to no interest in taking it.  I know it can be like taking a vitamin, however, I would not take a vitamin without researching it thoroughly.  Thus I researched Tamoxifen, then really, really thought about my medical history and became very afraid. 

You see, if you recall, I made mention somewhere in the past of episodes of Intrahepatic Cholestasis of the Pregnancy.  This is some bad-you-know-what stuff that you really don't want while you are pregnant. I lucked out enough to not have it just once, but twice!  The truly interesting piece is that I did NOT have it while pregnant with Nicholas.  Now Peter and I have our own theory as to why it didn't happen, but theories aside, cholestasis and liver damage (in general) can both be side effects of guess what? Tamoxifen.

So if I appear to be a bit hesitant to swallow that pill, it's with good reason.  ICP is not a walk in the park, but at least it is 'curable' in that it disappears once one gives birth.  As far as I can tell, Cholestasis (not of the prenatal) variety does not.  One might then be inclined to think, "Well, at least you won't have a recurrence of breast cancer!" 

Maybe.  Nothing I have read/heard from my doctors says I won't have a recurrence, just that there is a lower chance of a recurrence (and not a huge one in my opinion).  Given my stage, my Oncotype and all other factors (and let's not forget my natural reticence to incorporate this type of drug into my protocol), to me it is too risky.  I am quite sure that some may see my hesitance as unwise. However, I am one of those crazy people who sees this from a different perspective.  

I don't see this as a time to attack with the big guns, and thus far, the data seems to be indicating that 'less is more'.  Yes, I went ahead with the surgery, however that was to remove the cancer.  It was invasive, and there is* risk, but I did not see anything inherently toxic.  I still regret feeling that it was necessary, but it was not as though they took out the cancer and put something equally as bad back in. While Tamoxifen may have its benefits, it is far from something one would naturally take on a regular basis.  The side effects are known and numerous (and include cancer).  There are those who have taken it and still had a recurrence.  There are those who have NOT taken it and had no recurrence.  Where does that leave me?

Completely and utterly undecided.  My oncologist feels it is necessary, Peter is less hesitant about me taking it after talking with her today, and I still want nothing to do with it.  As it is now, I have a grace period and have indicated I will not even consider taking it prior to January 1st.  If I end up doing radiation (for whatever truly compelling reason), then I will defer beginning the Tamoxifen until that is completed.

Now there is one small chance that my ICP was actually related to gallbladder issues and I do not have the enzymatic defect that causes cholestasis.  I only just learned of the possibility this evening and it is a very small to non-existant chance.  If it was truly a gallbladder** problem (blockage of the ducts with gallstones) vs. a liver problem, then there is a better chance my worries are unfounded and I will give the medicine a go for a trial period.  Isn't that incredibly reasonable of me?

In the meantime, can I just say how I am so tired of decision-making and feeling like everything hinges on me making the "right" decision?  Unfortunately, no one knows for sure which decision is best and it always seems to me to be a 'lesser of two evils' scenario.  Hard to believe fewer than two months ago, my biggest worry was about the bid list and our choices.   Oh, how I yearn for those days…

*I typed "is" because having a mastectomy carries permanent risk factors.  I write that not to frighten anyone, just to make he/she well aware.  In fact, the risk factors are the reason I (finally!) obtained a referral to a physical therapist.  I don't think I am having any problems at this time, but want to be 100% sure I am on track as far as recovery goes.  Despite my breast surgeon's insistance I would be fine without it, the oncologist thought my idea of an overall assessment to be a very good one (points for her and sort of evens out the Tamox issue a teeny bit) and immediately typed up a scrip.  

** Generally, having one's gallbladder removed does not ensure that one will not have ICP. However, apparently there are cases where one could seem to have ICP, but instead has a version caused by gall stones blocking the bile ducts.  Since it was assumed that I would have ICP with each pregnancy (and most women still have ICP even with cholystectomy), there was never any testing done for the liver defect…hmm…

Filed under Uncategorized Tagged with , , ,

In a groove

November 1, 2010 3 Comments

of good spirits.  For whatever reason, and I am not questioning my good karma on this matter, my ability to be a bit more even-keeled has extended into today and no end appears to be in sight.  Not only did I not spend the entire day worrying about next week (or the weeks after) but I was actually able to get a few things accomplished.

I'd like to believe that something magically clicked and my enthusiasm for life will not again ebb, but I am not going to go that far.  I do think that finally really revisiting the oncologist appointment with Peter might have much to do with it.  As much as I expected last Wednesday afternoon to be a complete wash, I was actually pleasantly (yes, a happy word) surprised by the visit.

Now I am not necessarily 100% on board with everything that she desires for my treatment plan. However, as it stands now, there is only one semi-definite item on her list for me:  hormone therapy, in the form of Tamoxifen.  As far as I am concerned, this needs to be discussed a bit more.  I was not expecting to hear anything about it in the appointment, so had not adequately researched it prior to our meeting.  Now that I have….well, many questions will have to be answered and topics discussed before I will choose to go ahead with it (yes, choice, a wonderful thing!).  It doesn't mean I won't, but I am not jumping head-long into anything.  However, we have plenty of time for a review, so yet another item  I can put on the back burner for now.

Perhaps I should start at the beginning….after lunch following the visit to the plastic surgeon, we drove to the hospital arriving at the hospital well ahead of our visit.  We arrived very promptly at the wrong office, and then spent 15 minutes trying to find the oncologist's office.  One problem:  it was located next to the cancer treatment area and no one could tell us exactly where it was.  No signs pointing us in the right direction, and we finally stumbled upon it by sheer dumb luck (why are hospital ground levels like mazes?).   The receptionist was kind (why do they have to be so nice?), but inundated me with a stack of paperwork.  My medical history (just one more time…), the usual consents and basic contact information.  

A few minutes later we were interuppted to begin the appointment.  It wasn't until this point that I realized that the office was within the treatment center.  The nurse took us back and let me know she needed to get my weight.  We turned the corner and landed smack in the middle of a room half-filled with patients in the middle of chemotherapy treatments.  I was stunned and it hit me full-force why we were there.  Yes, it was only a consultation, but that could easily be me in a few months.  

Suddenly weak-kneed, I stood on the scale.  She noted my weight and I realized quickly the (only) bonus:  I am dropping weight faster than I have in years.  It's not the cancer, but the accompanying stress.  I was fully clothed with chunky-heeled boots on and still weighed two pounds fewer than I noted on the form (and I thought that was a low estimate).  The nurse then took my temperature and blood pressure and exited in time for the doctor to arrive and ask that we continue the meeting in her office.  

I was not sure what to expect at all, but she was just, well, normal.  Not overly stressed, not in my face about treatments or my "lack of options," just concerned and wanting to get as complete a picture as possible of my history.  Peter began and then she began peppering me with questions.  She admitted it wasn't to stress me, but to really try and figure out what was going on.  In fact, she was still catching up on my case and had not realized that I was not going to have neo-ajduvant chemotherapy prior to surgery (yes, we, too, were surprised when she mentioned it).  There were a few minutes of confusion and she finally realized another exam was needed to give her the full picture.  

The exam gave her a better idea, but the primary problem is that no one knows the full extent of what is going on inside me.  There are numerous calcifications surrounding the tumor and the lump that I felt may or may not be entirely cancerous.  It is, sadly, a mystery of sorts that will only be solved when the entire area is excavated (if you will)  and studied next week.  While it is thought that (unlike the original estimate) the invasive portion is only .2 cm, no one knows for sure…hence the need for surgery.

The exam, a thorough review of the path report and finally confirmation that I am Her2-negative (this is a good thing).  In case you are taking notes, I am also ER and PR positive.  This is the situation that the oncologist was hoping to find, as it means more treatment options and that the breast cancer may not be as aggressive as it could be.  Yes, this is GREAT…well, so I have been told.  It doesn't negate the fact that I have still have cancer and am facing up to…egads…months to years of treatments, it simply means that the response to the treatments might be much better than if I happened to be ER/PR negative and/or Her2-positive. 

After the spiel on Tamoxifen and the mention of "shutting down my ovaries," I fell into a daze of sorts.  I am guessing that between the stunned look and a few tears, that she seemed to think we could discuss the subject more later.  She then began to touch on chemotherapy.  I didn't lose it (amazing, as I am not pro on the idea at all), but at least in this area, there is more room for contemplation.  She utilizes a method of testing called Oncotype DX test in order to assess whether chemo is truly needed.   Clearly, I am hoping to be on the low end of the spectrum, but we will discuss thoroughly and weigh the options no matter what score I receive.

Given my family history of clotting issues, she was motivated to order a rather thorough work-up to ensure that if hormonal therapy would be used, it would not be problematic for me.  The visit ended on a high note of only 9 tubes of blood being drawn, though the wait was far more painful.  It was a good 20 minutes before the nurse could figure out how to "code" the test, take the blood and then not screw up the tube labeling.  

Ideally, I would never choose to spend the afternoon at the oncologist's office.  However, she was so refreshingly human that it was not nearly as painful as I expected.  I can't say I was working on all gears, as I was so incredibly nervous about what she might suggest.   It wasn't until I started reviewing the information that I realized I had digested worst case scenarios that she had not mentioned.  By Saturday, I was up to reviewing the day with Peter and he realized that I was putting more stress on myself by somehow confusing one of the issues on chemotherapy.  He insisted he was correct, and thoughtfully verified with the doctor today.  Oh, and he didn't call her, SHE called us.  She just wanted to relay the results of the blood work (all clear) and check on me.  Thoughtful, eh?  

I really don't want to have an oncologist.  However, I think if one must be had, her demeanor, concern and willingness to help in a thoughtful manner has convinced me that she is the right one for me.  Not something I ever thought I would say or write, but I'm liking the calm and just going to focus on the positive…(I know I've said that before and promptly fallen off the wagon, but I think I'll cut myself a little slack given the circumstances).  Oh, and another reason I may be happier…a day off from appointments tomorrow AND a trip into DC with the girls.  Distraction City, baby!

 

Filed under Uncategorized Tagged with , , , , ,