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Getting clarity May 15, 2018

Posted by Judy in Musings.
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Last Wednesday, I had a PET scan, and the results were mixed.  After visiting with my oncologist today, I’ve decided that there is more good news than bad news, it’s really a matter of how you look at it.

The bad

  • I have progression in my lung area.  The pleura, which is the lining around your lung, has thickened.  Looking at the picture on the scan, I saw way more things lit up than I wanted to see.  Basically, this means that if it continues to thicken, it could restrict my lung from expanding and cause more breathing issues.  We don’t want that.
  • My tumor markers went up from 700 to 1083.

The good

  • Now I know why I was getting these weird pokey pain under my sternum, the pleural thickening.
  • Even though I’ll be starting a new medication that has lots of potential side effects (hairloss, mouth sores, constipation, nausea, tiredness, aches and pains), I’ll be starting this AFTER my responsibilities at the University are over, and as things are winding down at work.  What great timing!
  • I don’t have to wait around for insurance approval.  I’ll be getting a port placed on Wednesday morning, and hope to start chemo on Thursday.
  • It’s only four cycles, and then I’ll never have to do this very toxic combination again.
  • The oncologist thinks that this med has a better chance of working than the Xeloda.  (This is actually what he said before I started Xeloda, but I opted to try Xeloda first because I wanted to delay IV chemo as long as possible.)
  • I’ve been having stomach discomfort and nausea for like 2 months now, so it’ll be old hat once I start the chemo! =)
  • I’m feeling pretty good.  On a scale of 1 to 10, generally I feel like a 7.5 or 8.  That means that this is the ideal time to try this really toxic combo so that my body has the best chance of dealing with the toxicity.  (See how the timing is working out so beautifully?)
  • The cancer in my spine has decreased.  (Yes, please do a happy dance!)
  • The cancer in my femurs, humeri, and pelvis seems to be decreased as well. (More dancing!)
  • The bone metastases seem to be under control. (Alright, it’s a straight up dance party up in here!)

See, so there is way more good news than bad news.  Yes, it sucks that I have to go the IV chemo route as that chemo tends to just blast everything in site, whereas the oral chemo is more targeted, meaning fewer side effects.  But we’ve seen that the oral chemo isn’t cutting the butter, so IV chemo it is.  And no, I’m not thrilled about having a port again.  I’m actually pretty ambivalent about losing my hair.  I kinda rocked the bald head the last time, so, bring it, I guess!

I’m ready to get this new plan started and see how well it works.  If you are the praying type, I’m asking specifically that I won’t suffer the dramatic effects of the chemo, and that it will help to kick this disease into remission.  Thank you to all of you for your constant and continued support!  Words can’t express how much that support has been helping me this past year! ♥♥♥

 

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Esophagitis and brains April 12, 2018

Posted by Judy in Musings.
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I realized after several people poked me about the brain MRI that I never shared the results!  I guess that got lost in the rollercoaster that has been the past month.  The good news is that my brain is clear, no problems.  Huzzah!  I do have some spots in the bone marrow of my skull, but that is consistent with bony disease in my body.  I honestly don’t know how much bony disease there is at this point, but no one seems to be worried about that, so I’ll choose to not worry as well.  I’ll just focus on the fact that my brain is clear, for now.

My current issue is something called esophagitis.  I just finished 10 rounds of radiation to my spine in the t2-t4 region (which is where my compression fracture is) and the l2-l4 region (which is lower down where I was having pain).  When I signed the consent, the list of possible side effects was enormous.  The radiation oncologist is very thorough in explaining, which I appreciate.  But the long list means that I didn’t really internalize everything on the list.  I finished the spinal radiation on Thursday of last week.  Two days later, on Saturday night, I noticed that it hurt in the middle of my chest when I burped, or when I ate food.  I’d swallow a bite, and a second or two later, I would feel pain when the food got about 4 inches down my esophagus.  My dad had the thought that maybe it was a result of radiation, since the discomfort was exactly in the t2-t4 section that was radiated.  After talking to my oncologist on Monday morning, he seemed to think that was a likely cause, but wanted me to talk to the radiation folks.  Sure enough, when I mentioned the pain to them they said I likely had a mild case of esophagitis, which is an inflammation of the esophagus.  Fun!  So now I take a liquid an hour before I eat that coats my esophagus so that I can eat without pain.  The rad onc said the pain should clear up by the end of the week.  So far, I haven’t noticed the pain diminishing, so I’m feeling skeptical that it will clear up, but I’m trying to stay positive.  At least I’m not able to eat without pain with the help of the very expensive coating stuff.  As an aside, I’m SUPER glad that my dad was with me when talking to the rad onc, who was originally going to prescribe some other compound.  My dad asked what was in the compound, and we discovered, dun dun dun, lidocaine.  Yeah, can you imagine me drinking something with lidocaine in it?  My throat would close up immediately, I so allergic to it!  Phew, dodged that bullet!

Anyway, here’s a few more quick updates.

  • Pain meds are doing a decent job of keeping my brain tricked into thinking there isn’t pain.  I’m also hoping that the radiation I had to my pelvis will also help with the pain so that I don’t have to take as many pain killers.  I mean, I take the strong meds because I need them, but I’d definitely rather not be dependent on morphine, ya know?
  • I’m finishing up my 2nd cycle on Xeloda.  The main side effect is stomach pain and nausea.  I dry heave pretty much every day.  As awful as it sounds, it actually is really nice to be able to dry heave because then my nausea instantly disappears.  Hey, at least food isn’t coming up!  (Aren’t you glad I just shared that! lol)
    • After one more cycle, I’m going to have another PET scan to see if Xeloda is working.  I’m praying that it is doing it’s job as I REALLY don’t want to have to start up IV chemo again!

And, that’s a wrap!

Oh, the pain! April 2, 2018

Posted by Judy in Musings.
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Oh my goodness gracious . . . . . so. much. pain. I’ve been up since 1 with bone pain. I always said that if I ever went metastatic, I wouldn’t want bone mets, because it’s the most painful one. Of course, it’s also the one that allows you to stay alive longer, so it’s a big tossup. I’m here to tell you that the pain is intense.

I got up and walked around, which is the only thing that made it better. But my legs are weak and tired, so I couldn’t really keep that up. I had to wait 45 before I could take any pain meds, then I loaded up. But the pain was still there. I couldn’t lay down, couldn’t sit, couldn’t stand, so I just tossed and turned in bed and moaned and groaned. Eventually, hubs woke up when The Loose Cannon asked me what I was doing. “My body hurts, buddy.” We got up, and then I just melted down sobbing. No, not sobbing, crying, and hiccuping and gasping. It might have been wailing had it not been 2 in the morning. I cried harder than I’ve cried in a long time. I cried because I hurt so much. I cried because I didn’t know what else to do. Hubs held me. The Loose Cannon held me. They prayed for me. My mom got up, because mom’s are tuned in to hearing the moaning and crying and finding out what is going on with their child, even when said child is 41.

Once I got a hold of my crying, we starting walking around the dresser island, my little 3 generational support entourage and I. After about half an hour, things seemed better, so we decided to try going back to bed. But as you can see, it’s almost 4 am I’m still up. I’m not desperate to get the pain to stop, but it’s still present, and I’m not sure I can get comfortable sleeping, so I’m online getting things done instead.

I need stronger meds. Meds that will fool my brain into thinking that the pain is not there. Thankfully, I see the doctor in a few hours.

The Q & A shesh March 3, 2018

Posted by Judy in Musings.
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Between my appointment with the medical oncologist and the radiation oncologist this week, I was able to get all of my questions about this progression answered.  I’ve gotta tell you, it feels really good to have answers and to have a concrete plan!

Q:  Do I need to get my liver and lung biopsied to make sure it’s the same cancer?

A:  No.  Doing so wouldn’t change the treatment plan.  Also, the lesions that are on the liver and lung are very, very small and we don’t really need to worry about those organs having major progression.  (This is a small bit of good news!)

 

Q:  Should I get an MRI of my brain since the cancer seems to have moved around a lot?

A:  Yes, I think that would be a good idea.  We’ll send it to the insurance company for approval and then get you scheduled.  (I’m having the MRI on the 22nd.  I don’t think there is anything there, but this will be provide a baseline.)

 

Q:  What happens if I decide to not do any more treatment and just ride this out?

A:  Well, it’s hard to predict, but certainly you’ll have more and more progression to the bones.  Beyond that, it’s really hard to know.  But if you are ever to the point where you don’t want to mess with treatment anymore, I’ll support you 100 percent.  (I’m not to that point yet, but I DID want to know what exactly I was trying to avoid by taking new medications.)

 

Q:  My thighs really hurt.  It might be my thighs, it might be my bones, I don’t know, but it’s painful.  Should we figure out why?

A:  Yes, that would be a good plan.  Your femur bones are really important, they bear so much weight, so we want to make sure they are strong.  Let’s x-ray your bones.  (The x-ray showed a small metastesis to the top of the L femur.  The rest was clear, so no help there.)

 

Q:  What are my treatment options?

A:  You have two options right now.  We are stepping away from anti-hormonal treatment because that just doesn’t seem to be working well.  You can continue on oral chemo and take a drug called Xeloda that has a roughly 20-30% response rate.  If you are going to see a response, you’ll see that in about 4-6 weeks.  The other option would be to move to IV chemo and use Adriamycin and Cytoxan.  (AKA – AC)  (Cytoxan is one that  I used last time in 2014.  I didn’t use Adriamycin, the “Red Devil” because I had heart issues.  Those issues are resolved, so it’s now an option.)  Adriamycin is a SUPER toxic chemo, but very effective.  You would take 4 doses (every 2 weeks) and then if the chemo has caused remission of the disease, then we could talk about going back to some of the anti-hormonals.  But once you’ve done AC, you can’t do that combo again.   This combo has a quicker and more effective response rate, but it’s certainly more toxic.   (I really don’t want to go back to IV chemo if I don’t have to, so I’m leaving that as an option for later.  I’m going to take Xeloda, which I’ll talk about at the end.)

 

Q:  How often will I have to drain the pleura?

Q:  Also, when I breathe in, it feels like I have pop rocks in my throat.  What’s up with that?
A:  We can do a chest x-ray to check on the fluid and decide about draining.  I want to make sure you don’t have air in your chest wall that could cause your lung to collapse.  If you find that you are having to drain your pleura too often, we can talk about installing a pleural catheter, which will allow you to drain the fluid at home.  (Right now, I have a small to moderate amount of fluid.  This is one week after having had the thoracentesis.  The idea is that the medication could eventually kill off the stuff that is causing the fluid to collect.  Since I haven’t started the medicine, the fluid seems to be collecting quickly.  Sooo, I might be considering the pleural catheter.)

 

Q:  How can radiation help me?  I mean, once the vertebra is fractured, what can be done?

A:  Well, right now, your T3 vertebra has a compression fracture that is causing the outer part of the bone to push out into your spinal cord.  I’m actually very surprised that you are not in excruciating pain, given that your spinal cord is being pressed on!  (Answer to prayer?)  So if we do 10 rounds of radiation to that area, then we can reduce the amount of cancer in the bone.  Right now, the bone is in really bad shape because there is so much cancer there.  We won’t be completely getting rid of the cancer, but we’ll be able to reduce it such that the protruding bones will be able to come back together.  You could also do a consult with a neurosurgeon who would place screws and a rod in your spine, but that is a BIG surgery with a 3-6 month recovery time.  If you choose to go that route, you’ll be taking an asymptomatic situation and creating a symptomatic situation.  I would recommend against that.  (Totally agree!!)

 

Q:  Could you look to see why I have so much pain in my lumbar spine?

A:  Well, it looks like you have diffuse bony disease in L3, L4, and L5.  This means that there are small little spots spread out all over the vertebrae.  This will cause you lower back pain, and it could also be causing you pain in the thighs.  (Aha!  Now we know why my thighs hurt so much!!)  I would recommend radiation to the L3 area as well.  If we do this and you are still having pain, there is one more place that we could target: the place where the top of your femur meets your pelvis.  (Man, I love having answers to my pain questions!!)

 

So those are all of the questions that I got answered this week.  I also talked with the chemo nurse about the drug Xeloda.  I’ve heard about this drug and how harsh it can be.  I’ve had friends who had diarrhea so bad that they ended up in the hospital dehydrated and with resulting kidney problems.  I learned when I should call the doctor to make sure I don’t get to that dehydrated point.  The drug also causes an effect called hand and foot syndrome, in which the skin on your hands and feet swells, is painful, itches, and peels off.  The only thing you can do to help prevent this is to moisturize, moisturize, moisturize!  So you know what I’ll be doing!  It can also cause vomiting, but I have a plan to deal with that as well, and strict instructions on when I’m supposed to call the doctor.

I’ll be starting the drug tomorrow morning, with a big glass of water and an even bigger glass of trepidation.  I really pray that the medication will do its job with minimal to no side effects.  This is partly because I’m not exited about the side effects, but also because I want to go visit my BFF in Florida!

So there you have it, a long, but hopefully thorough update.  I’m feeling better and more positive, but I’m also realistic and know that this new drug is only expected to give me an extra 6-9 months.  Of course, I’d love to be on it longer, but there’s no telling because that’s how this disease works.

It’s a roller coaster.

There’s no cure.

It’s terminal.

But the drugs can kick the can down the road for an undetermined amount of time.

Thank you for your continued prayers and good thoughts, and for supporting me with your kind messages, and with your monetary donations and gifts of food.  I am humbled by the outpouring of love!

 

The Massively Ruinous Inspection February 25, 2018

Posted by Judy in Musings.
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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!

I hate being right February 21, 2018

Posted by Judy in Musings.
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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.
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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.
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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.

Breathless May 9, 2017

Posted by Judy in Musings.
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6 comments

A few weeks ago, I read a book called, “When Breath Becomes Air” by Paul Kalanithi.  It’s a story about a man who was diagnosed with lung cancer in his last year of residency to become a brain surgeon.  In the book, he talks a lot about making life decisions, and how being faced with your mortality changes how those decisions are made.  He was very focused on research, and when his cancer came back in his brain, he was faced with whether he wanted to start long-term research projects that wouldn’t see results for 20 years, or focus on projects with more immediate results.  I find myself in a very similar position.  I was faced with my mortality when I was first diagnosed with breast cancer 3 years ago, and by and large, had come to terms with my death.  This time around, I’m having to think in more practical terms:  what is really important to me and what do I want to accomplish in the next handful of years.  Prior to the upsetting of my apple cart, I had planned on returning to school to get my Masters in Music Education with teaching licensure so that I could be a choral music teacher at the high school level.  This program takes about 2 years to complete.  Now I’m thinking this may not be the best idea.  I don’t have the luxury of time, so do I really want to spend that time away from my family?  I’m still working through that.  Fortunately, I don’t have to make any solid decisions until August, so I’ll let that percolate in the background and allow the more pressing matters, getting treatment set up, to inhabit most of my consciousness.

As I sit this morning, contemplating the upcoming treatment and my conversation with the oncologist, I’m struggling with faith, or the seeming lack there of.  I still have faith and believe that The Master has a plan and that He is sustaining me.  And yet, I feel unsettled.  I am fearful.  Even though the doctor-approved message is “This is bad news but not terrible news”, I’m with my BFF in feeling like, how is this NOT terrible news?  I’m struggling with reconciling my feelings over being told that I have a handful of years, with faith that The Healer can heal me.  Does the fact that I’m fearful and bummed mean that I’m lacking faith?  Conversely, does thinking that I’ll live several more decades mean that I’m seeing things through rose-colored glasses and not being practical?  I don’t know.  I just don’t know.

My oncologist is great.  He’s so down-to-earth, practical, and scientific in his approach.  He came into the room saying, “So you got the terrible phone call on Friday and I’m imagining you had a difficult weekend.” and immediately launched into answering questions and showing me pictures of the PET scan.  We spent about 40 minutes talking, and lots of information was exchanged.  I’ve tried to organize the information, but be prepared, it’s a lot.

Step 1 is to have a bone biopsy.  Chances are really high that this is breast cancer that has metastasized and not a new cancer.  But, the doc wants to make sure he knows exactly what we are dealing with so that the treatment will be the correct one.

Step 2 is to shut down my ovaries.  This can be done either surgically, or chemically with a medication called Lupron.  I’m likely going to go with the chemical option as it has zero recovery time.

Step 3 is to start hormonal therapy.  Since the cancer is in more places than just my armpit, I won’t be having surgery as it doesn’t really make a difference to survival whether or not the lymph node tumors are removed.  No sense in doing a surgery, that requires recovery, if there is no benefit.  Instead, the plan is to use two different medications.  The first is called Faslodex, and it is used for post-menopausal women (which I will be once the Lupron does it’s job) that have estrogen receptor positive breast cancer that has stopped responding to previous hormonal therapy (Tamoxifen, in my case).  The second is a very new therapy, approved by the FDA in 2015 for use in treating postmenopausal women with hormone receptor positive, HER 2- breast cancer.  This medication interferes with the growth and spread of cancer cells.  While talking with the doctor’s nurse after the appointment, I was surprised to discover that this medication is actually oral chemo.  Surprised, because the doc had said I wouldn’t need chemo this time.  I’ve decided that what he meant by “chemo” was the intravenously infused version, and not the oral version.  While I’m glad that I won’t have to go in and do infusions, I am bummed that I’ll again have to deal with chemo side effects, which include:  nausea, vomiting, neuropathy, mouth sores, hair thinning/hair loss, fatigue, diarrhea.  I’m most bummed about the hair loss, as I’ve finally come to terms with dealing with my curly hair, which came back thicker, something that I didn’t think was possible.

Step 4 is to speak with a nutritionist to see how making changes in my diet can have a positive effect on eradicating the cancer.

Step 5 is not specifically set up by the doctor, but he is okay with it . . . alternative therapies.  I am considering two different supplements:  Immunocal (which works with glutathione in your body) and Artemisinin (which has been used in Chinese medicine).  I need to do some more reading about both of these, so if you know anything and can enlighten me, I’d be grateful for the information.

The final step has nothing to do with the doctor, it has everything to do with you all . . . . . . prayer.  In the next two weeks, we will be having a prayer service, likely at my house, and also an anointing service, which is, I think, a decidedly Adventist thing to do.  (It’s based on a passage from James, chapter 5 verses 14 and 15)  If you’d like to be involved in either of these services, let me know.  If you are not local, that’s okay, you can still pray for me and my family and we welcome the prayers.

So I guess that wasn’t as much info as I thought, but it’s still a lot to process and digest.  I’m hoping that I can have the bone biopsy done this week, because step 2 can’t take place until after the procedure as the doc doesn’t want to do anything to mess with the chemistry of my body prior to the biopsy.  Once that is done, it’s full sail ahead, and I’ll be hanging on for dear life!

Miniature Christmas Tree May 6, 2017

Posted by Judy in Musings.
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2 comments

Having a PET scan is very similar to getting a CT scan or a bone scan.  The tech injects a radioactive isotope into your veins.  Said isotope moves through your body, and then a machine takes a bunch of pictures.  The difference with a PET scan is that the pictures provide a look at the cellular level while the other scans look at the larger internal structures.  They inject a substance called FDG, fluorodeoxyglucose, which is a simple sugar chased down with a bit of radioactive material.  The idea is that cells need sugar in order to reproduce.  Cancer cells are greedy, and as such will gobble up sugar when it’s available.  So the isotope and the sugar circulate through the body, then the pictures are taken.  By some magic that I don’t quite understand, the end result is a set of images.  Areas that are dark are presumed cancer free.  The bright areas are those that light up because the sugar and isotope have been gobbled up by cancer cells.  So that’s your crash course on PET scans.  Now, on to my experience and results.

My veins are a train wreck thanks to chemo, so I always warn people that my veins like to behave badly, they roll and they blow.  This time was no different.  The vein she chose rolled and then blew.  She tried again on my forearm and had success.  Once she injected the goods, I sat around and watched “Love it or List it” for an hour while the sugar/isotope circulated through my body.  Once in the scanner, I had to lay still and got sooo bored.   So I sang a song that happens to be DD’s favorite:

My God is so big,

so strong and so mighty,

there’s nothing my God cannot do.

The mountains are His,

the rivers are His,

the stars are His handiwork, too.

 

Then I thought about a text message that my aunt had sent me last night saying that for some unexplicable reason, once you lay down on the scanner, you feel peace.  And you know what, I did.  I just knew that regardless of the results, I would be at peace.

Then I started getting ancy, so I started counting specks on the ceiling, and the holes in the machine, and anything else that I could see without moving my head.  They really need to have better things for patients to look at, like a little slideshow on the ceiling would be great!

Anyway, so fast forward to 5pm when I called the nurse and got the results of the scan.  She led by saying that she unfortunately didn’t have good news.  Then she went on to tell me that there’s disease in both of my axillary areas, in my right humerus bone, in my thoracic spine (mid-back, which I think explains why my fall over a month ago was so painful), and in my right groin.  She said the next step is to get a biopsy of one of the bony areas to see if this is a new cancer or if it’s the previous cancer metastasized.

This is not the result we were hoping for.  Evenso, I’m feeling very calm about the whole situation.  The nurse was even surprised at how well I was taking the news.  Honestly, I’m kind of surprised, myself.  As I’ve been thinking about it for the past 6 hours, I’ve come to the conclusion that a confluence of factors is helping me find calm.

  1.  Faith – I just know that God has a plan and that He’s got me.  Never in my life has He left my side.  Yes, there have been challenges, but I was a better and stronger person on the other side.  This is another one of those challenges that I will weather with Him sustaining me.  My aunt sent me a quote from a Dwight Nelson sermon:  “Faith takes us beyond reason, beyond empirical evidence.”  I can’t love this quote enough!
  2. Prayers – So, so many of you are storming the heavens for me and my family.  While some might say, “But you have more cancer, He didn’t answer your prayer.”, I would say that He did answer, it was just “No”, or “not yet”.  Just because He didn’t answer in the affirmative doesn’t mean He has let us down.  It would be easy to just throw your hands up and say, “I quit praying, He didn’t do what I wanted.”  But I would counter that this is the time to step up the prayers as well as changing the focus.  Yes, pray for healing, but also pray for understanding, acceptance, and faith.  So don’t give up on the prayers, keep them coming, because they work and I can feel them.
  3. Indeterminance – This might seem like a strange word to associate with calm, but in this case it fits.  Here’s why:  while I have more information now, it’s not complete information, meaning that my path is not yet determined.  We don’t know if it’s a new cancer or the old cancer.  We don’t know how much cancer there is in each area.  We have no information on it’s treatability.  As far as I’m concerned, that’s a whole lot of uncertainty, and I see no point in getting stressed out and worried.  Sure, the Grim Reaper is knocking at my door, but at this point, to door is still barricaded.
  4. Support – It goes without saying that I have the most amazing friends on the planet.  The amount of support and love pouring onto my FB feed today was unreal.  All of the texts and FB messages covered me in love.  It’s so, so amazing and I’m humbled!
  5. Hope – While I don’t have concrete information as to the extent of the disease, my gut tells me that I should still have hope.  In my gut, I feel like this is going to be treatable.  Think about the cancer in the bones.  You may be thinking, “Wait, I thought her bones were clear?”  Yep, I thought that, too.  But remember that the bone scan just shows the major structures while the PET scan is on the cellular level.  My thinking is that the size of the cancer was below the threshold of what could be seen in a bone scan, thus leading me to the conclusion that the cancer in the bones is small.  This is a good thing!  Obvs, it would be even better if it weren’t there, but that ship has already sailed and no use in trying to chase it down.  So, even though my scan lit up like a Christmas tree, it was only a miniature Christmas tree, and so, I am hopeful.

What’s next?  I see my oncologist on Monday afternoon to discuss, and I plan on having a slew of questions to throw at him.  I’m going to want to see the pictures.  I’m going to want to know how big and terrible, or not, this is.  I’m going to talk to him about alternative therapies (diet, supplements, etc) to complement the traditional therapy.  I’ll expect to leave armed with a plan of attack.

I’ll leave you with three youtube recordings of songs whose lyrics are giving me comfort, and with a quote from my Aspie 9 year old.

“Lots of cancer doesn’t mean you are dying.  Lots of cancer is just lots of cancer.”