A Diva Moment

A rough day October 30, 2018

I hugged both of my oncologists today.  We both did, hubs and I.  I broke down and sobbed in the radiation oncologist’s office today.  We both did, hubs and I.  We all cried and squeezed each other’s hands, hubs, my cancer doula (a very good friend), and myself.  It was a rough day.

Over the weekend, I was in the hospital because of tachycardia (really high pulse), 150 to be exact.  We discovered that I was woefully dehydrated, which was part of the reason for the tachycardia.  But also discovered that my right lung is in a really bad way, so much so that it’s pushing my heart to the left, which is the other reason I was tachycardic.

So the story of my lungs is this:  Back in January, I started having shortness of breath which was attributed to a right-sided pleural effusion.  I was drained a few times, then took some really strong chemo over the summer that dried it up.  Starting at the beginning of September, I started to feel not so great.  A CT scan on 9/20 revealed that the effusion was back as well as some thickening of the pleura.  What I missed then is that there was a tumor growing on the outside of the lung in the pleura.  I also missed that the tumor was covering 1/3 of my lung.  The decision was made to start weekly Taxol to deal with that and a new liver progression.  I had a CT scan in the ER this weekend, which was roughly a month later, and that showed that the fluid had increased, as had the thickening, and the tumor had grown such that it occupied the space of 2/3 of my lung.  That is some wicked fast growth for one month!

I was told by the on call oncologist that I needed radiation to the area.  I asked her what happened if radiation couldn’t help.  She just looked at me and said “I’m sorry.”  So there I had it, my first “your death is near” conversation.  Hubs and I spent about an hour talking to the radiation oncologist on duty that weekend, discussing whether or not it would be useful to do radiation.  Basically he thought that now we were measuring in weeks to months, if we could do successful radiation, then we’d be measuring in months.  My second “your death is near” conversation.

Today I saw my regular radiation onc.  He hadn’t seen the images, but he looked at them as I chatted.  He was rather quiet as he looked.  Once he’d seen the images, he said that he felt very confident drafting a plan for radiation, even though he didn’t really think it was going to help much, maybe 1%.  He suggested that seeing a pulmonologist  who could get me some oxygen would be the best option.  He also said and that we were measuring in weeks.  My third “your death is near” conversation.  And then there were a lot of words that I honestly don’t remember because I was just trying to keep it together and not burst into tears.

At one point, he asked if I wanted to do radiation or not.  I couldn’t speak, I just broke down.  He suggested that he’d go see another patient to give us time to discuss.  My cancer doula stepped out, hubs and I hugged and cried, wailed more like it, and we talked very earnestly.

When the doc returned, we had decided no lung radiation, which also meant no brain radiation.  At this point, the lung progression is so rapid that it just doesn’t make sense to continue brain radiation.  Additionally, the radiation was detracting from my quality of life and I wasn’t able to do the treatment today because lying on my back made me feel like I was suffocating.  So, quitting makes sense.

My visit with my oncologist was different.  We agreed that harsh chemicals were not the way to go.  They were hard on my body and were not working quickly enough.  So no more chemo.  He gave me the option to continue the immunotherapy, which has a small chance of working.  I’m still thinking that through.  He also suggested hospice, knowing that if I wanted to do immunotherapy, I could come out of hospice.  He loaded me up with the right pain meds and meds to help me with the panic of not being able to breathe, said to see how I feel in the next 10 days, and then see him again, but only if I wanted to.  So I’m going to meet with hospice to see what they can and cannot do for me, and still keep talking with my onc.  He did not say what our measurement unit was, but definitely set me up so that I could prepare for the end.

Phew!  How are ya’ll doin’?  It’s a whole lot to take in.  I know some of you will want to rush over to visit.  While I can manage visitors, I can’t manage unexpected visitors.  Please send me a text.  Talking is a challenge for me now, so a text is best.  Also, be prepared to dunk yourself in sanitizer and I may not be giving hugs just because I’m really susceptible to infection right now.  If the sanitizer and no hugs is too much for you, I am more than happy to chat via email or text or FB messenger.  Or the Marco Polo app.  I love you all so much and don’t want to push you away.  I know my limits, though, and I tire easily.  I want to stay in touch, it just may not always be face to face, okay?  ❤ ❤

I hugged both of my oncologists today.  I broke down and sobbed in the radiation oncologist’s office today.  It was a rough day.

Mask Redux October 12, 2018

Yep, you read that right, I’ll be getting another creepy radiation mask.  I had a follow-up brain MRI yesterday to check to see that the previous radiation had done it’s job.  It had.  Good news.  The MRI also showed that I have “inumerable” new lesions through the brain.  Bad news.  The last things the MRI showed was that there is only a very minimal amount of brain swelling and that the brain lesions are slow-growing.  Good news.

Enter the new mask.  Tomorrow I go in to be fitted for the new mask.  The doctor says this is a different type so it should not be as tight.  Even so, I’m going to have a word with the guy making the mask.  Then sometime next week, I will start whole brain radiation, which is different from the pinpoint stereotactic radiation from last time.  His preferred plan would be 15 daily doses using the hippocampus sparing technology.  The hippocampus is deep in the brain and is where memory is stored.  He really wants to avoid radiating that for several reasons:  1) I’m young, 2) breast cancer patients tend to do well with this treatment.  The problem is that the trial that showed that this therapy actually did decrease significantly the memory issues is a stage 2 trial.  This means that it was a small number of patients, not-randomized, and without a control group.  Apparently, treatment changing decisions are not based on stage 2 trials, rather, they are based on stage 3 trials.  Practically speaking, the insurance companies sometimes don’t want to cover the treatment because it’s not based on a stage 3 trial.  But the radiation oncologist said he is prepared to fight and appeal and appeal to get it approved.  Does this treatment make a difference in terms of efficacy of the treatment?  No.  But saving my memory is important enough to him that he’ll fight.  I liked seeing that gritty side of him!  The other thing he’ll be fighting for is the 15 treatments rather than the 10.  Doing 15 treatments means you get more radiation overall, but then each dose is smaller, which reduces the chances of side effects.  But, it’s more treatments, hence more money.  So, he’s got his fighting gloves on.

Sometime next week I’ll get started on the treatments.  Once they are done, we wait another 2 months to get another MRI to see how many have shrunk or disappeared.  If all is well, the doc can do several boost doses.

I’m rather numb right now.  I spent a good portion of the morning just sobbing and talking to hubs.  We had some good conversations, and talked about the hard stuff:  What do I want my funeral to be like?  Do I want to make more videos for the kids?  What do I really enjoy that I should be seizing and doing now?  So we’d talk, and then I’d be okay, and then I’d start sniffling and sobbing again.  Brain metasteses scare me.  I can handle the new liver mets, and I could handle lung mets.  But the brain just scares me silly.  I’ll be spending lots of time on my knees, because for sure for positive, I can’t do this part of this journey with Him walking along and carrying me.

Plan D September 26, 2018

When you get MBC, you are given a package with an unknown number of plans inside.  There’s a limit to the number of plans available to those of us with MBC.  I don’t know how many there are in my package, but for now, we are on to Plan D.  The CT scan showed the increased pleural effusion, which we knew from the x-ray.  It also showed that I have 2 lesions in my liver.  They aren’t big, 1ish and 2ish centimeters, but they are new.  I was kinda bummed at that news.  That basically means that the cancer has invaded the four main areas:  bone, brain, lung, liver.  Alas.  The bone scan impression said:  elevated uptake in the bones could be from a healing response or from persistent metastatic disease.  Real helpful, right?  “Ma’am, either you are dying, or you’re healthy.”  We are hoping that this ambiguity will satisfy the insurance company’s requirement that “previous pictures were unclear in their results”, and then maybe they’ll approve the PET scan.  In the meantime, though, we know new stuff is going on an my doc was like “I’m not waiting for the insurance company to get their act together.  We need to start treatment right away!”

Plan D is chemotherapy (Taxol) and immunotherapy (Keytruda).  The chemo kills the cells at any point in the growth cycle, which is why I’m going to lose my hair again, probably have some mild stomach issues – although nothing like the previous chemo – and possibly a few other mild side effects.  This chemo is weekly, and I’m told it’s a very easy chemo to deal with.  So far, so good.  The immunotherapy works differently, but I’m not sure I totally understand how it works.  It only kills cells at a particular part in the cycle, so it’s not toxic, but somehow it teaches your body to kill the cancer cells.  Yeah, I have no idea how that works.  The “I’ve just been diagnosed with cancer” me would have gone out and done research.  The “I’ve had MBC for 18 months” me has no intention of doing research =)  I’m just taking the medical professionals’ word for it!

So Plan D was put into place on Monday.  I was at the cancer center the. entire. day.  Seriously.  I walked in at 7:15am to get my blood drawn (my blood draw from Friday showed low Hgb, which explains why I basically slept the whole weekend), had an appt with the doc at 7:45, then went back to chemo at 8:15.  There’s a fair amount of hurry up and wait with chemo infusions.  For example, they gave me Benadryl, which took 15 minutes, but then they had to wait like 45 minutes for it to really soak in to the tissues before they could give me the next med.  Rinse and repeat, and we finally got the chemo going.  The chemo itself took about an hour to infuse.  The immunotherapy only took about 20 minutes.  Once all of that was done, I had to get a unit of blood (remember the low Hgb values?)  I walked out of the cancer center at 4:15!  Next week won’t be as long because I hopefully won’t need another blood transfusion, and I won’t be getting the immunotherapy, as it’s every 21 days.  I just can’t be spending an entire day at the cancer center once a week!  That’s too much!

The one thing about Plan D that is interesting is that we are now working off label, in experimental land.  The immunotherapy has not been approved for breast cancer nor have any studies been done on it’s use.  It IS approved for lots of other cancers, just not breast cancer.  Combining chemo and immunotherapy also hasn’t been studied in this combination for breast cancer.  There are other studies that have shown that adding immunotherapy to chemotherapy has made both more effective, so we are extrapolating that out to breast cancer.  I’m kinda pleased that the oncologist is willing to go off the beaten path and to try new things.

Let’s pray that Plan D will be the long-term plan.  Plan C actually worked quite well.  The problem with that plan is that it had a finite life span, and as soon as I reached the end of it’s life span and spent 2 months without treatment, the cancer went bonkers again.  So continual treatment is the name of the game for me.  So Plan D, let’s get it!

Short-lived September 17, 2018

I win the prize for the shortest remission ever!  Just 2 short months!  My last chemo was July 5th.  A month later, I had a bunch of scans that pretty much showed a good response to the therapy and a good remission.  A month after that, I started having all over bone pain and discomfort in my lungs and trouble with getting winded.  I knew something was up then and that was the end of remission.

I’ve spent the past 2.5 weeks working with my oncologist trying to track down the cause of the new pains.  This has been made more difficult by the insurance company denying the PET scan request.  Their reason?  I’d just had a CT scan which already showed that I had metastatic disease.  (Duh, we already know that!)  Getting another type of scan would not give new information.  I beg to differ, though.  If I’m going to have pinpointed radiation to deal with the bone pain, we need to know where the cancer is, hence the need for the PET scan.   (Insert giant eye roll.)  The insurance company said, “No, no, no-no-no-no!”  So aggravating!  So instead, my doctor and I are going to play the game.  I’m going to have another CT scan and a bone scan (even though the bone scans are nigh unto useless), in hopes that the results will be inconclusive and that maybe they will approve a PET scan.  It’s so dumb that we have to play these silly games!

Anyway, so while we were waiting for the scan foolishness to get worked out, I decided that I wanted to get a chest x-ray, just to get SOME information.  I had the x-ray today, after which the tech said “Perla, you are in my thoughts and prayers, dear.” which left me thinking she must’ve seen some bad news.  And she did.  The fluid is building back up in my pleural space (pleural effusion) and there is evidence “concerning for metastatic disease” in the lung.  As soon as the doc saw the results, he asked that I come in right away for a visit.  There, he decided that he wants me to start another chemo right away.  It’s called Taxol, it’s once a week, and is much gentler than the AC combo I went through this summer.  Even though I’m approved through the manufacturer for the immunotherapy, doc said he can’t count on that working as it’s an experimental drug, which is why I’m starting the new chemo.  Ideally, he’d like me to do both, stating that some studies have shown the efficacy of the medications increases when chemo is combined with immunotherapy.

So, that’s where I am for now.  I’m waiting to get scheduled sometime this week to start chemo and immunotherapy.  I’ll be having a CT scan on Thursday, and hopefully a bone scan sometime this week before I see the doc again next Monday.  I know some of you might see this as bad news, and I suppose it sort of is since the disease is progressing.  But, I’m feeling pretty good, actually.  I have a partial answer for what is wrong and we have a plan.  Let’s do this!

The Mask August 10, 2018

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.

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.

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! =)

Horror of horrors! August 8, 2018

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

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

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! ♥♥♥