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The Mask August 10, 2018

Posted by Judy in Musings.
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If you saw my Facebook post, you’ll know that the radiation treatment was just horrid, but not for the reason you or I might have thought.  I dutifully took Ativan to help me be mellow for the procedure and I was mellow, not at all worried about being strapped in.  That is, until they strapped me in and I realized that the mask was TIGHT!!  Apparently, the plastic had shrunk a bit when it fully hardened and the top of the mask was pressing on my forehead in a really dramatic and forceful way.

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The techs had me shift a bit, but nothing really helped, so they just got started.  I made it through the radiation for the first spot okay.  They asked if I wanted a break or if I wanted to charge right on through.  I needed a break for my poor forehead, so they took the mask off for a few minutes.  They put it back on and got started on the second spot.  This involved taking pictures, moving the bed side to side and the machine all around to make sure there was enough clearance.  By the time they got to this point, my head felt like it was going to explode.  It hurt so, so much from the extreme pressure of the mask, and the ache was starting to travel down to my eyes.  (In fact, it’s been 7 hours since the procedure and I still have a slight headache.)  I discovered that if I pushed my lower jaw into the tense position, I could shift the plastic just a smidge so that it wasn’t pressing on my forehead so much.  This worked great, until my jaw got tired, and then I just got frantic.  I knew there had been 4 blasts of radiation on the first spot, so I was counting on the same for the second.  It became an exercise in how to move my body without moving my body:  clenching my fists, squeezing my toes, trying frantically to move my head, knowing it was futile.  The music was no longer distracting me, clenching my hands wasn’t helping, and I was close to waving my arms and telling them to “Get me out of this thing!”  So for the last two blasts, I counted out loud.  I don’t know that it helped, but at least I was able to pass the time.  I was so relieved when they came in and removed the mask.  I ended up with dots on my face from the tightness.

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At least it was only one session.  The doctor is very happy with how things turned out.  At this point, I have to just watch and see if I get nausea or vomiting, have mental changes, or unusual headaches.  If so, he’ll have to start me on steroids to deal with brain swelling.  The biggest side effect of the steroids is weight gain as well as a dramatic enlargement of the head, which is why he doesn’t want to give me the meds unless I show symptoms.  I’m okay with that and am praying that there are no symptoms.

The one fun thing about today is I get to keep that crazy mask.  I see a Halloween costume in the making! =)

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Horror of horrors! August 8, 2018

Posted by Judy in Musings.
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I’m having brain radiation sometime this week, and I’m freaking out.  But I should back up a bit and share the results from the 3 scans I had last week.  The CT and bone scans were filled with good news.

  • My bones are in good shape and it appears they are healing.
  • Many of the lymph nodes are either smaller or no longer an issue.
  • The pleural effusion (liquid around my lungs) is very, very small and the pleural thickening (which was new after treatment 2 – Xeloda) is also considerably less.

So from this, it seems that the IV chemo did a good job of kicking the cancer back.  I don’t think it’s to the point of saying there is no disease, but the disease is very minimal, it would seem.   Our next treatment plan is to go with immunotherapy, which is the new up and coming treatment for some cancers.  It’s working quite well for lung cancers, but has not yet been approved by the FDA for breast cancer.  I’ll be taking an IV chemo called Keytruda, which is supposed to be a very kind treatment.  It’s not chemo, so no hairloss, no nausea/vomiting, etc.  The goal is to build up my immunity, not tear things down.  There is a chance that it could cause my body to attack normal organs, which would be bad.  But I think the benefits outweigh the risks.  Since it’s not FDA approved, the insurance company is most likely going to deny the request, at which point the doctor will go to the manufacturer and ask for the medication for me on a compassionate basis, and they will likely say yes.  So in a few weeks, I should be starting the plan.  Either it will work really well and I’ll hit the jackpot, or it won’t do anything at all, and we’ll have to go a different route.

The one thing the IV chemo regimen I just finished doesn’t do is pass into the brain.  This means that the brain gates were wide open for cancer to take hold, and it did.  I have two very small spots (3 mm and 5 mm) as well as one spot (also small) that may or may not be cancer.  The treatment I decided to go for is pinpoint radiation, which is one 45-ish minute session with several radiation beams that go directly to the 3 spots to get rid of them.  I’ll have another brain MRI in 2-3 months to make sure it worked and to make sure nothing  new has popped up.  Seems easy enough, right?  Read on!

Yesterday, I met with one of the radiation team members to get mapped for the treatment.  I walk in and he says, “So we are making a mask for you today?”  My heart stopped and I thought, “What? I’m getting an iron mask?!?!?!  This is not what I was expecting!”  Sadly, I was partially right.  The mask is not made out of iron, but it might as well be given that I can’t move at all.  The mask is made of some sort of plastic that is yellow and looks like a honeycomb flanked on either side by a strip with latches and screws that attach to a thing on the table.  So basically, the mask is screwed to the table so that I can’t move at all.  The mask is made up of two parts:  the part behind my head – this is no big deal  – and the part on my face.  (This is very similar to what they used, with the addition of cutouts  for my eyes and nose.)

When he first laid the hot plastic thing on my face (it’s hot so that it can be molded to my head/face, then it hardens as it cools), I thought “Having my lips covered like this isn’t going to work.”  Then he pushed a little guitar pick-looking thing into my mouth and told me to bite down on it.  That was better, at least I didn’t feel like someone had their hand over my mouth.  But after a few minutes, I realized that having my mouth open like that meant that saliva was pooling.  I could either just drool, or try to awkwardly swallow.  Go ahead, try it.  Lay on your back, put your finger in between your teeth and then try to swallow.  It’s very awkward and sort of made me feel like I was choking.  At the end, I realized that I could relax my lower jaw and I’d have a smidgen of room to move since he’d molded the mask to my non-relaxed jaw.  Honestly, though, that bit of room is just not much.  I mean, I get why my head needs to be perfectly still since they are aiming at something smaller than a grain of rice.  But, I’m hoping that they can knock me out for the procedure.  Lying still for 45 minutes with my head in a mask screwed onto the table . . . horror of horrors!!

Coming clean August 4, 2018

Posted by Judy in Musings.
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I’ve decided I need to come clean.  I’ve been lying to most of you all summer.  If you’ve asked me how I was doing or how I was feeling, and I said, “Good, things are going really well,” I was lying to you.  Well, not flat out, bold-faced lying.  More like only-telling-half-the-truth lying.  You see, my body has been doing much better this summer than it was back in April-May.  My mind, on the other hand, has been a complete train wreck.  I’ve spent most of the summer either angry or profoundly sad.  I discovered several things this week.

  1.  My schedule changed drastically this summer.  I went from being busier than I thought imaginable with school, work, etc., to having nothing on the calendar.  I suddenly had lots of time to think and contemplate what my life has become.
  2. My depression decided to rear it’s ugly head again this summer, which only made the life contemplations worse.
  3. I’m a different person than I was last summer, when MBC was new.  I’m thoroughly exhausted from constantly fighting the MBC fire.  This exhaustion makes me lack patience to deal with any other challenges.

I’ve decided that enough is enough.  I’m done with being an emotional wreck.  So step one is to get the depression under control.  The next step is to stop trying to manage other people’s emotions about my disease.  This means not glossing things over when people ask how I’m doing.  Seems like there should be a third step, right?  I don’t have one.  This is a good start,though.  Get ready for the good, bad, and ugly.

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! ♥♥♥

 

Esophagitis and brains April 12, 2018

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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

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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

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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.
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!