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Thankful-ish November 25, 2017

Posted by Judy in Musings.
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5 comments

Prayer warriors, I need you today.  I’m feeling discouraged and worn out with this fight, and it’s only been 6 months.  I know we are supposed to be thankful this weekend, but I’m not really feeling it.  So, in an effort to fool myself into thankfulness, I’m going to try and share all of the good things that have happened since my last post in June.  (But still pray, cuz I’m just so tired.)

In June, I had a salpingo-oophorectomy, which is the fancy way of saying I had my tubes and ovaries removed.  It was, hands down, the best hospital/surgical experience to date.  My surgeon was great, (it helped that we are friends), and I discovered that two of my friends were nurses on the surgery floor!  The surgery went relatively well, and recovery was good.  The best part, though, was the effect it had on my tumor marker.  (This is a number that tells you whether or not there is cancer in your body.  Lower is obviously better.)  I started about about 220.  It took 2 months to get the ball rolling, and in that time, it went up to about 350.  After the estrogen factory was shut down, it dropped 100 points, which was great!  Clearly, the cancer is very much so in need of estrogen.  (I’m thinking I should have done this long ago.  Alas!)

A few days after the surgery, I started taking my meds.  The major side effects are exhaustion and joint pain.  If you saw me walk right when I got out of bed, you’d think I was an octogenarian, what with all of the hobbling.  The exhaustion is pretty epic.  It’s pretty much on par with having a newborn . . . . you are tired with no real way of catching up.  But, I deal with these side effects because a) they could be SO much worse and b) the meds are doing their job (unlike the Tamoxifen that I took for 2.5 years).  How do I know it’s working?  Because of the PET scan that I had in September.  At that point, I had been taking the meds for 3 cycles (3 months), but was having a return of back pain.  The scan showed that some of the bulbs on my Christmas tree had burned out.  (Happy dance!)  The oncologist walked into my appointment and said, “This is the best possible news in this situation.”

Basically, all of the spots in my lymph nodes had cleared up.  I still have cancer in my spine, but there is less of it.  Sooo, that’s great!  I’m currently seeing the oncologist every two months instead of every month.  I’ll see him this week, and if there’s any news there, I’ll share.  I’ve been having lots of aches and pains that are new.  I’m banking on that being bone that is healing and not bone that is being broken down.  But, it is admittedly hard to not stress out!

Anyway, so that’s the news from cancerland.  I’m doing my darndest to live my best life:  working at a great job, getting my master’s of music education with licensure, spending time with the kiddos, reading, and watching TV with hubs.  Some days, though, it’s gets to be too much:  the aches and pains, the news of another mets sisters passing away, the exhaustion.  Those are the days when I should come back and read my PET scan report, because it all seems to be good.  And for that, I am thankful and I praise the Lord!

 

 

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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.