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Like molasses June 20, 2017

Posted by Judy in Musings.
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6 comments

Updates have been few and far between, which is in stark contrast to my initial breast cancer diagnosis 3 years ago when the updates were coming fast and furious.  The difference in pace illuminates the fundamental difference in how early stage breast cancer and metastatic breast cancer are perceived.  When the diagnosis is anything other than stage 4, the plan is GO GO GO, treat treat treat, let’s beat this thing!  When you get to stage 4, things seem to slow wayyyy down.  There isn’t quite the rush to start treatment as there is in the earlier stages.  I’ve decided that’s because when you get to that stage, there is no cure.  (I mean, there really isn’t a cure in the earlier stages either, but that’s apparently a well-kept secret.  Aaannd that is a topic for a different blogpost!)  Things slow way down and time is taken to decide on the best treatment plan.  So this is why you haven’t really heard from me, there wasn’t anything to share, up until now.

If you’ll recall, I had a 5-step plan for treatment.  Let’s review and discuss what has gone on with those steps.  Step 1 was to have a bone biopsy.  That took place a few weeks back, and it was confirmed that indeed, the cancer in my bones is the same one that was in my breast.  Step 2 was to shut down my ovaries (i.e. estrogen factories).  This was to be done with a drug called Lupron.  I received one injection and spent the following two weeks having major thermoregulation issues, feeling achy in my joints, and having a headache that wouldn’t quit.  I did some reading and discovered that the drug is really strong and kind of evil, actually.  There’s a facebook group called “Lupron victims”, finding that group gave me pause.  Long story short, I decided that I neither wanted nor needed to continue taking the medication.  There are a lot of other toxic chemicals I’m going to have to take.  Since this one wasn’t required, I decided not to subject myself to it.  “But wait”, you say, “what about shutting down the estrogen factory?”  Good question!  It can be shut down chemically or mechanically.  I had originally gone for the chemical option because the recovery time was nil, but, I have since changed my mind.  As such, I’m having my ovaries out on Wednesday the 21st.  I’m well aware that I’ll probably have all of the same side effects as with the Lupron, but it will be more natural, if you will.  But, beware, I’ll probably be an emotional disaster and when you see me sweating up a storm, just smile and nod and pretend that all is well!

On to step 3, which was the crux of the treatment, hormonal therapy.  I haven’t actually started this, since the factory is not yet shut down.  There was, however, a change in medication because the insurance wouldn’t approve the oral chemo unless I took it with Femara instead of Faslodex.  (Insurance companies are so annoying!)  Sooo, Femara it is.  I have the Femara (an aromatase inhibitor which inhibits the conversion of adrogens to estrogens) and expect the Ibrance (oral chemo which blocks certain enzymes that cancer cells need to grow) to arrive tomorrow or Wednesday.  You see, I have been upgraded to a special category, one in which the medications get shipped to my front door directly from a specialty pharmacy.  Aren’t you envious?  Oh, wait, no, um . . . . . . . anyway . . . . . . so I’ll start taking the hormonal medication next week to give my body time to heal from the factory removal.  (As a side note, the removal is happening laparoscopically, which means only teeny, tiny incisions, which means a quick recovery time.)

Step 4 was to talk with the nutritionist, which I did, and it didn’t really net me much cancer-fighting info.  Oh well, I’m still planning on trying to be ultra healthy, so don’t be surprised if you see me drinking lots of green smoothies and shots of wheatgrass!

The final step, step 5, was to do complementary therapy.  In my previous post I said alternative, but that was the wrong term.  Alternative implies that I would not be using traditional Western medicine.  Complementary, on the other hand, means that I’d be using other methods in addition to Western medicine.  The biggest thing I have been doing is prayer.  I pray constantly and have many friends who are always lifting me up.  I also was anointed by an elder from my church several weeks ago and had a wonderfully uplifting prayer service attended by many friends.  The other thing I’m doing is using Chinese medicine.  I’ll admit that I know very little about it, but I’m learning as I go.  A friend of mine is helping me out by offering treatments to help reduce my stress and to boost my immune system, which is going to take a hit thanks to the oral chemo.  She is using cranio-sacral therapy, Reiki, and a little bit of acupuncture.  We are also looking into the possibility of Chinese herbal compounds.  The final thing we are going is laugh therapy.  Every night, hubs and I watch an episode or two of Big Bang Theory.  We started at the beginning and are partway through Season 2.  We only have up to Season 3, so when we finish that, we’ll have to find the other seasons.

So are you confused yet on the plan?  It’s a lot to take in and process!  The biggest question for me is:  how do we measure efficacy?  The answer is a combination of different methods.

  1. Checking tumor markers on a regular basis. This is a test that shows if there are elevated levels of a particular marker present in the blood when certain types of cancer are present. My original reading was around 260ish.  The one from Friday was 330ish.  Upward is not good.  But then again, I haven’t really done anything to help the numbers go down.  So, this is why the test is done on a regular basis.

 

  1. My own evaluation of how I feel. The importance of this method cannot be underestimated.  Let’s not forget that the entire reason that the breast cancer was found in the first place was because I was paying attention to my body, and it’s the same reason the metastasis was found.  So I’ll continue to listen to my body and speak up when things seem off.

 

  1. Scans. PET scans, CT scans, and ultrasounds are some of the imaging that will help to measure efficacy.  I’ll be getting an ultrasound done next week to have a baseline measurement of the tumor in my left axillary lymph node before starting the oral treatments.  CT scans will happen when we need to measure the growth or shrinkage of lesions.  PET scans are obscenely expensive, so they will happen “only” every few months, just to make sure nothing new has popped up.

If you made it through all of this, you deserve a medal!  I’ve gotten it all worked out in my mind, but the thing I’m learning is that there’s no sense in looking too far down the road.  It’s one step at a time.  When you see where that step takes you, then you can figure out where the next step should be placed.  It’s a slow process, so don’t be surprised when I go silent.  On the other hand, don’t mistake silence for good health.  In addition to being an enigma, metastatic breast cancer is a chronic and terminal disease.  In this case, silence is just silence.  If you want to know whether the silence has positive or negative implications, shoot me a text or email or PM me.

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Motivation June 7, 2014

Posted by Judy in Musings.
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3 comments

I haven’t written in a while.  Partly because there’s not much to say, but mostly because I just. didn’t. want. to.  This has been a common refrain the past few weeks.

I don’t feel like getting up in the morning.  (Fortunately, the babes have all been sleeping in for the past few weeks.)

I don’t feel like cooking.  (I’m so grateful for all of the friends who have kept my family supplied with food over the past few weeks!)

I don’t feel like blogging.

I don’t feel like exercising.

I don’t feel like doing much of anything.  My motivation went on vacation and didn’t bother to warn me that it was leaving.  I know, totally rude, right?

In thinking about why my motivation up and left, I’ve come to the conclusion that I’m just tired, emotionally and physically tired.  Having a positive attitude has worn me out.  I know that might seem odd, but really, it’s so much easier to mope around and do nothing than to make yourself get up and go and be a ray of sunshine and inspiration to others.  Going through chemo is wearing me out.  It was going pretty well, but things have started to go south, and it makes me so weary to think that I’m only halfway, and then there will be many weeks of radiation and then five years of hormonal treatment.   I look at where I’ve been and think “Wow!  It’s gone so well, I feel so blessed, I can see God’s hand leading.”  Then I look to where I have to go and my faith falters, exhaustion reigns and motivation disappears.  I’m know this pit I find myself in is not permanent as evidenced by the teeny bit of motivation I felt to actually blog today.

Many of you have been asking how chemo is going, so this seems like a good time to share an update.  The first two chemo sessions went remarkably well.  I fell less-than-good for a few days, but it wasn’t terrible, just felt a little run-down.  Chemo #3 was a whole other ball of wax.  For me to say that I’ve felt good would be a big fat lie.  Likewise, to say that it was horrible and unbearable would also be a big fat lie.  I was somewhere in the middle, leaning more towards the horrible.  I kept telling myself that it could be worse, I could have sores in my mouth, be nauseated or any other number of things.  But the fact that it could have been worse didn’t diminish the fact that I just didn’t feel well at all.  My stomach hurt.  It was on fire.  I felt like I had food poisoning minus the vomiting and diarrhea.  I mean, yeah for not having it coming out both ends, but still, my stomach hurt.  On days 3 and 4 after the infusion, I was parked on the couch, not wanting to move anywhere, sleeping, and wishing the pain would go away.  It eventually went away, somewhere along day 9 after the infusion.  It got much better around day 5, but not good enough for me to be able to ignore the pain.  And not good enough for me to want to actually drink any fluids, so I had to go in and have a liter of saline pumped in because I was dehydrated.  As far as I can tell, there’s really nothing that can be done about the discomfort, at least nothing that I tried this time helped.  And as an added bonus, a milder version of the stomach pain just started coming and going this week.

So now I’m dreading chemo #4 next week.  I kinda want to say to the doctor, “Can we just stop now?  Haven’t we done enough?”  But I also don’t want to end up with a metastsis because I didn’t hit the cancer cells with both barrels.  Sooo, I’ll be having a long chat with the oncologist on Wednesday to find out how effective is chemo really?  How necessary are the two extra treatments?  Can I do anything else that will produce the same effect (kills the cancer cells/keep them under control) without going through more chemo?  Originally he said four cycles for sure and if I was tolerating them well, he’d push to six cycles to be as aggressive as possible.  I suppose you could say that I’ve been tolerating the chemo fairly well.  Here’s a quick story to illustrate:

I had to see the surgeon because we thought my port had flipped.  He walked in and said, “Wow!  You look great!  How do you feel?”  We chit chat for awhile and then he interrupts himself to say, “Have I mentioned that you look great?!  No, really, it’s quite marked!” So, I guess I’m tolerating it well.   (Of course that was before chemo #3! )  I’m not sure that I’ll continue to fall into the “tolerating it well” camp as I have already seen other symptoms popping up (nail beds are turning black and a metallic taste in my mouth).

But, enough about chemo.  I have another good update.  Remember that nodule that was discovered on my ovary when I went to Mayo?  I had a follow-up ultrasound (here, not at Mayo) and both ovaries were totally normal.  Hallelujah, thank you, Lord!  We were so relieved to get that test result back.  Phew!

As I’m proof-reading this post, it sounds really whiny to me.  I’m not generally a whiny person, but I’m gonna go ahead and allow myself the chance to whine, just for a little bit.  I have two other blog posts rolling around in my head, and both of those are fun and happy, so stay tuned for the return of positivity!