jump to navigation

The Massively Ruinous Inspection February 25, 2018

Posted by Judy in Musings.
Tags:
3 comments

Thursday afternoon saw me back at the Cancer Center for another imaging study.  It started out with a tech who, after I warned her that my veins behave badly and don’t like to be poked, bragged that she never had any trouble.  Of course, she tried twice and failed spectacularly twice.  A nurse came down with a bit of swagger.  I sort of wanted her to fail, too (shhh, I know, I’m bad!), but I was glad she didn’t cuz getting stuck 3 times was more than enough.  I was having lung pain because of my thoracentesis that morning, (Here’s a short 1 minute vid if you need a visual.) so the MRI was delayed a bit while they checked with the doctor to make sure my pain was normal.  It was.  Although it would have been nice to have been warned that I could still be having discomfort hours and hours later.  Alas!

Anyway, they gave me earplugs, bundled me up with blankets and a wedge for my head, and the knocking and wild noises began.  I was apparently incredibly tired, because I kept dozing off.  No, not dozing off, falling fast asleep.  I was so asleep, that when the test was over and they pulled me out, they had to help me sit up and I was oh, so groggy!  lol  But that’s really where the hilarity ended.  I got the results the following morning.  From this point henceforth, that test shall be knows as the Massively Ruinous Inspection.  As if I hadn’t already gotten enough bad new, this test showed even more bad news.

  1. If you’ll recall, the PET scan showed metastatic pleural fluid.  (Pleural fluid collects in the pleura, which is the space between the lung and the chest wall.)  The MRI has me a little confused as to what is happening in my lung.  I”m not sure if there are mets in the lung itself, or if it’s just in the pleura.  That’ll be one of the many questions for the onc on Monday.
  2. The progression of bony mets appears to be mostly in my spine, but it’s all over my spine, and it has spread to the soft tissue next to my spine (paraspinal tissues at T7 and T8).  Also, the cancer has caused a compression fracture at T3.  This means that the bone was weakening from the cancer, and it could no longer support my weight,  so the bone compressed.  It compressed so much, in fact, that I’ve lost 70% of the height of that particular vertebra.  It sounds really terrible, and it is.  Fortunately, I don’t appear to be suffering any pain as a cause.  But, now that I know that my spine is weak, I’ll have to take extra care to not do anything wild.
  3. There appears to be something happening in the right lobe of my liver:  an indeterminate hyperintense lesion measuring 8.4 millimeters.  I think indeterminate means it’s not known whether or not it’s malignant.  So, I’ll need to talk with the doctor about that.

So the way I read it, I have progression to my lungs and liver, and then more stuff in my bones.  I’m not gonna lie, I’m starting to feel like this is the beginning of the end.  Maybe it’s because I actually feel sick, or because it’s for sure that the first line of treatment failed me.  I don’t know, I’m just not feeling overly positive.  I’m hoping that after meeting with the onc on Monday I’ll have a better sense of where I’m headed.  There is still a big question mark hanging over my head:  will it be oral medication, or IV chemo?  Do I need to do radiation?  What about a biopsy?  Is surgery in the future?  What kinds of side effects will there be from the treatment.  So. many. unknowns.  Blech!

The one thing that is keeping me going is my incredible support network.  You all are just amazing!  The outpouring of love and tears and prayers and support is a thing of beauty.  Regardless of what happens or where things go from here, I know we will be a team.  For that, I am eternally grateful!

Advertisements

I hate being right February 21, 2018

Posted by Judy in Musings.
Tags:
6 comments

I really need to quit being right about everything.  Well, I’m not right about all the things, but I do tend to be right about cancer things.  Way back when this all started,  I knew that the little pain was cancer.  When the doctor wanted me to come in to talk about results in April, I knew the cancer had spread.  More recently, I knew these little aches and pains were off.  And once again, I was right, things are not going well.  So you see, I really need to quit being right about everything.

But I need to back up and catch you up on the past 3 months, because so many things have happened.  Last we chatted, things were stable and I’d just had a really good PET scan.  (This was at the end of November.)  As a matter of fact, the scan was so good, that the doctor had to double check and make sure he was actually looking at my scans and not someone else.  We all rejoiced!

Two weeks later, I was standing in the kitchen and I got a stabbing pain in my right side, near the bottom of my ribs.  The pain morphed to more of what a really giant bruise would feel like, but it didn’t go away.  The onc and I spent the next two months chasing down the pain.

First, I saw the NP, who thought it could be an internal bruise, as I had no other symptoms.  I knew she was wrong, so I kept pressing for an answer.

Then I had a bone scan, which showed nothing new in my bones.  And yet the pain persisted.

Finally, I had a CT scan.  (At this point, it had been about 5-6 weeks since the pain first started.) The scan showed a small collection of fluid in the pleural lining of my right lung, and some other thing in my thoracic spine (which is where some of the bone mets were) that was possibly encroaching on the spinal nerves.  At last, we had something that resembled a cause for the pain.

While all of this was happening, I developed pain in my whole body.  It was a diffuse and dull aching, and it was miserable.  I just wanted to curl up into a ball, but even that didn’t help.  My onc prescribed me a really strong pain med, which I have been taking with success as needed for about 3 weeks now.  During this time, I’d had blood work done several times and my tumor markers were spiking from 330 up to almost 500 in about 3 weeks.  I also had this feeling that things just weren’t right in my body.  In addition to the pain in my right side and the all over diffuse pain, I also had some strangely persistent abdominal pain.  Those close to me tried to tell me I was doing too much, or that I wasn’t sleeping or eating enough.  But I knew better than that.  I knew something was wrong.

After meeting with the oncologist, we decided to have an MRI in order to see more clearly what was happening in the thoracic area, and a PET scan to get a complete picture.  Shockingly, the insurance company approved the PET in less than an hour!  This is shocking, because I’d had to wait at least 2 weeks for each of the other tests (bone scan, CT scan, MRI) to be approved.

So you are now brought up to speed.  I had a PET scan yesterday and got the results today.  It’s not good, and I’m not surprised.  (Here I go again, being right.)

  1. The bony mets have progressed.  I’m not sure to which bones, and I don’t know why the progression wasn’t picked up by the bone scan.  My best guess is that things are moving quickly, and in the month between the bone and PET scan the bony mets were on the move.
  2. The fluid around the R lung is metastatic, and there is now a medium to large pleural effusion.  I’m having it drained tomorrow, so we’ll see how much fluid is there.  Draining it is just a stop gap measure, though, it’s just to make me comfortable.   The fluid will continue to come back until we land on a med combo that works to keep the cancer at bay.  (As an aside, I have zero understanding of how the fluid accumulates, what cancer has to do with it, and how the fluid gets cancerous.  These are all question for the onc on Monday.)
  3. I have wide spread new mets my lypmh nodes:  upper abdominal (which explains the abdominal pain), retroperitonium, mediastinal, and mammary nodes (which explains the pains I’ve been having in my chest).

None of this is good.  Not one bit.

At this point, I’m a bit frantic because I haven’t been taking any meds for 2 weeks.  (Once the CT scan results came in, the onc took me off the meds because a) they weren’t working and b) my system needs to be clear of the meds in order to be eligible for some trials.)  All I can think is “Crap!  This cancer is going bonkers!”  But I also know that the onc will come up with a plan.  I know there are still lots of medication options before I reach the end of the medication road.  Just a few are oral meds and the rest are IV chemo.  While I’m not thrilled about IV chemo, I’m really not thrilled about dying, so I’ll do what I need to do.

I have the MRI tomorrow and onc appt on Monday.  By then I’ll have a plan and I’ll have had a nice, long pity party, and then I’ll be ready to be back at living my best life.  In the meantime, I’ve really GOT to figure out a way to quit being right!!

Thankful-ish November 25, 2017

Posted by Judy in Musings.
Tags: , ,
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!

 

 

Like molasses June 20, 2017

Posted by Judy in Musings.
Tags: , ,
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.