Tuesday, March 19, 2013

Feeling blahhhh

I know it's normal to feel blah sometimes -- for cancer patients and non-cancer-patients alike!  Just venting here...

I am sick sick sick of having to live within arm's reach of a tissue box.  [OK I just checked and I see that I haven't before mentioned this issue on my blog -- here goes]  My nose runs CONSTANTLY since I've been on Abraxane.  Clear water (with the occasional blood-tinge.)  It literally DRIPS out without my consent and at times, without my knowledge!  Everywhere I go, I have to make sure I have tissues on my person, always.  I have to be well-stocked on Kleenex or Puffs at my desk, in my kitchen, in my car, in my purse, and in my pocket.  When it first started, I thought it was allergies, so I tried all the OTC allergy meds.  Nothing.  Zero improvement.  My face and eyes seem a little puffy, as well, as evidenced by the fact that all of my previously wearable sunglasses make creases in my cheeks.  Although this could be because I've gained weight, which is another animal altogether.  :(((  I mentioned the nose running to my doctor, long ago, and she said "I know it seems counter-intuitive, but it's caused by dryness in the nasal membranes."  Seeming counter-intuitive just might qualify as the understatement of the year!  She suggested that I try saline nasal spray.  I said "ewwwwkayyyy" and later told Danny that that was the most absurd thing I had ever heard.  I've got nothing BUT moisture in there.  An over-abundance.

Well, after several months of embarrassing, public, nasal drip-outs, I finally decided to try a saline nasal spray.  Guess what happened.  It just simply ran out of my nose.  Instantly.  Gahhhhh!  Here is yet another symptom, of which I've had several over the years, that I tell the doctor and it's like she's never ever had any other patient with that same complaint.  And yet I hear other patients speak of the same problem.  Case in point:  during a recent waiting room wait, I heard another patient complain of her nose dripping/running.  I felt so redeemed!  See!  I'm not crazy!  There is an online "advanced breast cancer" community where we stage IV fighters can converse on our shared problems.  Maybe the doctors need to read those sometimes.

And the other thing that's got me down, is that I still can't seem to come to terms with how I look.  Bald, with no eyebrows or eyelashes.  A woman is not supposed  to look like this.  Even with hats, it looks abnormal.  I never feel like I look good.  And even when I think I do, I later see photos of myself and am shocked to see how awful I look.  Also, I feel like I am aging at an extremely accelerated pace.  I look like a little old lady.  More and more wrinkles, by the day!  Hate it!!!  All my life, I've been blessed with good skin, and always looking younger than my age.  Now I look older than my forty-something years.  Very depressing.  The baldness, the oldness, PLUS the 10-15 pounds weight gain = I am quite a sight!

Although I am still able to care for my family, and I do try to focus on the positives and the things I CAN do, sometimes I wallow and can only think of the bad.  Guess I'm only human.  There are so many LITTLE things though.  My nails are coming off my fingers and toes.  The constant nose running.  The weight gain, which my doctor says is a result of the chemo slowing my metabolism.  The leg pain which still exists when I'm the least bit active (although it has improved.)  The eye irritation/dryness and sometimes over-watering.  The mouth sores (I have 2 large ones, right now.)  The constipation.  The neuropathy symptoms, which come and go (I can't even bring myself to mention here the latest on that front.)

Now that I've gotten all this out, I am able to think of many, many side effects that I'm glad I DON'T have -- which is helping to lift me out of this funk.  I'm not puking.  I'm not bedridden.  I don't have brain mets.  I can still walk and visit family and see my kids' activities.  God is with me and clearly is not finished with me yet.

Tuesday, March 5, 2013

The latest ... I'm doing OK!

A few weeks ago, I had my usual round of every-three-month scans & tests.  And also a bone scan.  The CT scan of the chest & abdomen showed NO pleural effusion, NO enlarged lymph nodes, STABLE lung & liver mets and STABLE skeletal mets.  I'll take it!  Although I was hoping for more improvement, stability is better than progression.  The bone scan was done because I hadn't had one in almost 3 years.  My ortho doc thought it was a good idea to look at bones elsewhere in the body because for quite some time they've only been seeing the bones visible on my chest/abd CT scans, AND because the report of the MRI of the lumbar and sacral spine was so dismal.  The bone scan showed "Multiple active osseous metastases, new/progressive compared to 04/2010 bone scan."  Ewww.  Horrible sounding, yes.  But, to keep things in perspective, this is compared to a 2010 bone scan.  Between 2010 and now, I've been through multiple treatment changes because of progression of the cancer in many areas of the body.  We KNOW it's been progressing.  We just haven't been closely monitoring the progression in the bones as in other places.  So it's more specific information about the bones, it's not necessarily all brand new metastases and cause to panic and change treatment when clearly the current chemo is doing some good things.

Also based on the MRI findings, my ortho doc recommended radiation to the spine to try and alleviate the leg pain I've been having.  That really threw me for a loop!  And honestly, it disturbed me.  I'm no doctor, but I have been around cancer for a very long time and I was a registered nurse for 10+ years.  While I don't understand everything that radiologists put in scan reports, I do get a lot of it.  And from what I was reading in my MRI report, although there was heavy cancer involvement  in the spine, it was not impinging on the neural pathways leading away from the spine and into the leg.  It wasn't clear to me that the spine mets was the cause of my leg pain.  I didn't have any back pain.  The pain didn't come from the back and radiate down the leg.  In fact the pain was pretty far from my back.  Perhaps it wasn't even related to my cancer, even though that is what I always want to rule out when I have any new symptom.

Let me say here that I DO NOT have time for radiation.  The last thing I need is to have to go somewhere EVERY DAY for weeks.  The last time I had radiation was 13 years ago after my mastectomy & chemo.  Five days a week for 5 weeks.  Easy peasy on the body, but highly inconvenient!  I had a 13-year-old, a 3-year-old, and an infant.  With a lot of family help, I got to those radiation appointments just fine.  But now, with a 15-, 13- and 10-year-old at home and involved in all kinds of different activities and in 3 different schools, plus our own business to run, it wouldn't be as easy!  Plus, it just seemed unnecessary to me.  That's right, even though ortho doc is recommending radiation, Dr. Kim doesn't think she needs it.  :)

I quietly took in all the information that I was given.  After leaving the office, Danny and I talked and we both agreed that radiation seemed rather extreme at this time.  Something else was also eating at me:  the radiation that I had to the chest 13 years ago wasn't even successful at keeping the cancer at bay locally!  At the time the cancer came back as stage IV, it also appeared as a local lesion right on the mastectomy scar!  How could I be sure that radiation to the spine would alleviate the leg pain?  Or even rid the spine of cancer?  We both felt that the doctor wanted to find a cause and provide a treatment for my leg pain.  I had an appointment scheduled with my breast cancer oncologist, Dr. Coscio, in the following couple weeks, and we decided to discuss the issue with her.

We explained the whole situation to Dr. Coscio, and she went along with our NOT wanting to have radiation.  She wasn't convinced, either, that radiation was an appropriate treatment for me at this time.  Instead, she referred me to a pain specialist to try and get to the bottom of my leg pain.  I was able to see Dr. Chai that same day.  He reviewed my scans and agreed that it didn't appear the spine issues were causing the leg pain.  Since they did show some inflammation in the knee, I asked if I could take regular doses of some kind of anti-inflammatory.  He prescribed one, to take daily, and also a pain med to take as needed.

Amazingly, the anti-inflammatory med has helped!  It hasn't completely taken away the discomfort, but I am able to do a lot more than before, and I've even started walking a couple times a week.  Like I always say, YOU HAVE TO STAY ON TOP OF YOUR HEALTHCARE!  Were it not for us diligently questioning my treatment plan and the reasoning behind it, I would be getting radiation to the spine right now.  Unnecessary, expensive, and inconvenient.

Now that I'm looking and feeling like a know-it-all, I want to clarify that if more than one of my doctors would have recommended radiation, I would have done it, absolutely.  Sure, I would have complained, (most likely, a lot!) but I would never decline doctor-recommended treatment on the basis of inconvenience.  In this case there was much more to consider.  And 2 out of 3 of my doctors didn't think it was a good option.

So, so thankful that I'm still able to do all that I do!  Blessed!

Thanks for reading.