So I last left you in the wacky er waiting room that truly felt like a three ring circus. After some time, we were escorted to a room where we explained what had been happening the last six months. I even pulled a note pad out and showed them the difference in my handwriting over the last three months. All agreed it was weird. I mentioned that I had breast cancer 11 years earlier. I did not notice a reaction of any kind. I just thought they should know, so they did a bunch of tests and an eye exam and some other stuff and then finally they sent me for an MRI. I have to tell you…I kinda knew what they were going to find. I hoped I was wrong. I’ve been trying to be more optimistic in my everyday life. The technician was very nice. Happy, jolly, pleasant. It was a comfort, as if his cheery disposition would cushion the blow. He asked me what kind of music I wanted to listen to. I said something relaxing. I think I ended up with Olivia Newton John and other selections of popular music from the late 70’s/ early 80’s. Reminded me of my childhood. It was fine.

They finished the scan and cheerily wheeled me back to my room in the ER. And what happened next was like an episode of ER! Very dramatic! Grab your tissues!

The ER doctor came in and he said something to the effect of…and I am mostly paraphrasing:

I don’t have much of a background in radiology but that scan did not look good. You got a bunch of stuff in you brain. Like tumors! A bunch of them. It does not look good for you.

This is the part I remember so I will put it in quotes.

“You need to get your affairs in order.”

Well, yikes. That’s not good, is it? Nope, not good at all.

Tumors in my brain. Too many to count and my brain was swelling and two of the many tumors were sitting right on my frontal lobes. This was bad.

He made some apologies about my situation. I replied that I got eleven years of no evidence of disease and I got to see my boys grow up. What else could I ask for?

But I still wanted more.

Wouldn’t you?

Needless to say I was admitted to the hospital that night.

Hey! I remembered I have a blog! And wow, did I ever leave my dear readers hanging with that last post.

In 2018, I got a biopsy in my groin because I have cuckoo swollen lymph nodes and my oncologist told me it was presenting as lymphoma. So, I had the surgery and the results were…

Wait for it…

Nobody knows! Seriously. They did not find cancer, just inflammation. They even sent the biopsy to Mayo Clinic where several esteemed pathologists took a look and shrugged their shoulders. They don’t know what is going on. Just that it isn’t cancer.

And so much has happened since then! I mean besides the poop show that is 2020.

Shall I catch you up?

In the fall of 2018, I decided to have major reconstructive surgery on my chest area. See, the implants my jerk plastic surgeon gave me in 2014 have been shown to give people LYMPHOMA. Yikes, right?

So I found a great plastic surgeon here in MN. Her personality is the polar opposite of mine. She is very serious, no nonsense and quiet to the point of reticence…but she’s really, really smart and seemed to be good at her job and not an asshole so I went with her. She told me that because of the radiation I had, I would need a serious revision to my right side. She told me the bare basics of her plan and I was all. OK! Let’s do this.

I was ready to go the summer of 2018. The thing is I was pretty stressed about it because my surgeon’s plan included taking muscle from my back and attaching it to my front to create a pocket that would hold the new implant. Gross, right? And my husband was not on board. He thought I had been through enough and should just be flat. And he was right. I had been through a lot and I did not want more surgery but also, I did not want to be flat.

So the morning I was to go in for my presurgery check up with my primary care physician, I notice a weird light rash on my back, just below my shoulder blade. I mentioned it to my doctor and she took a look.

“Umm…” she said, “That is shingles.”

What?! No!

Yes. Yes, it was.

And it was horrible. Surgery canceled. Summer canceled.

The shingles are, hands down, the most painful thing I have ever experienced in my entire life. Seriously, it felt like someone had thrown battery acid on my back. I kept checking in the mirror because the pain was so bad, I was convinced that when I lifted my shirt half my skin would be gone. But no, it was just this light, lacy, pink rash that looked almost like nothing. THE PAIN!

It was bad, so bad. And it went on forever. And, you may not know this, but shingles is freaking contagious to those who have not had chicken pox and I didn’t want to infect anyone so I basically quarantined myself for several months so 2020 is pretty much a redux for me. I’ve been here before and it is no fun.

During that quarantine, I spent a lot of time on the computer researching my family tree. It was actually fun and I learned a lot and I have managed to make a great deal of connections too. Many of my remaining questions have been answered. I just wish my first mother was alive so I could share what I have found with her. I know she would have been thrilled at my discoveries.

It took a long time to recover from those darn shingles and while I thought that would be the worst, it was really just the tip of the iceberg of 2018. I have so much more to tell you.

I can’t believe I left you hanging for two years!

Regardless, I am here. I am alive and I am mostly happy and doing well, all things considered.

What else can I say besides, stay tuned.

That biopsy was a big incision.  It still hurts.  I can get around and all but OUCH!

I have decided that life is too short to be a hero so I am babying myself.  Spending lots of time on my couch watching tv.  We watched a couple episodes of Lost in Space.  It’s good.

Going to make beef stew in my Instant Pot.

Oh! And there is a blizzard.  In April.  A blizzard.  We took my son to his job and it was crazy.  And now I am not sure how we are going to get him home.  I mean, it is crazy.  The snow!  In April.

I don’t know.  I don’t know what to think of anything.  You know, I need my hair cut and I really need my roots done but I was waiting for a diagnosis because I am not going to spend money on getting my hairs did if it is all just going to fall out from chemo.  That’s just me being practical. So now I still don’t know what is going on but yes, I need a little color and snip.

Blergh.  That is all.

 

First, I have to say I had a really good experience at my surgical biopsy.  Every single person at Fairview Southdale was super nice, super friendly and very reassuring.  I met with all of the nurses and doctors who would be working with me.  They walked me to the or, helped me onto the table, hooked me up to an iv and the next thing I knew, it was over.  The nurse in the recovery room was great.  It was easy and I was very comfortable throughout.  This is my 7th surgery since 2013 and it was almost an enjoyable experience.  Thanks Minnesota.

Second, the recovery has not been bad at all.  I mean, it’s painful.  I have stitches in a somewhat delicate area but it’s not terrible. And my pets and husband are keeping me company.  So that’s cool.

Third, I got a call this evening from my oncologist and she doesn’t know what the darn heck is going on.  The cells are reactive and have weirdness but it is not testing genetically for cancer.  What the what?! I guess it’s a good news/bad news situation.  The good news is that it doesn’t look like cancer, the bad news is that it looks like something.  Just nobody knows what.

So she is sending it to the Mayo Clinic for another opinion.  She told me that six different pathologists looked at my node and signed off on the report but nobody knows what is going on so now we have to wait some more.  Sounds like my life. Blergh.

 

I went to the er in October for what we thought was appendicitis. Had a CT scan. Not appendicitis. Instead, I was diagnosed something weird and rare called mesenteric adentitis. This basically means that the tissue in my lower abdomen was inflamed. The scan showed that I have inflamed lymph nodes in that area as well. My oncologist was concerned. In January, we did a follow up scan and the good news was that the nodes had not grown but they hadn’t shrunk either. So now there was a choice to be made, do a surgical biopsy or wait and see and get another scan 3 months later. We choice to wait and scan. I had the follow up to the follow up scan this week and the nodes have grown. They’ve grown.
It is presenting as lymphoma.
I am going to have the biopsy when we get back from our vacation. If it isn’t lymphoma, it could be breast cancer. We don’t know anything at this point other than I am in pain and can feel some of the nodes.
And I’m scared but I know, worry is a wasted emotion. It really is.
There is nothing I can do until I have the biopsy. There is no point in crying or freaking out. It looks like there will be another fight but the fight is not here yet. It is creeping outside the door but it is not here yet.
I am researching hospitals and oncologists, trying to figure out what the next steps will be because I am a planner. Thinking about putting the younger child in summer camps. Wondering if he would do a sleep away. Summer will be here before we know it , after all.
I am going to save this as a draft until we tell the boys. They should not have to be a part of this until absolutely necessary.

I can’t tell you how much I wish I had just had appendicitis.

I went in for a routine physical but it turned into something different.

I’ve been taking my Aromasin and it was really messing with me. I was really angry and argumentative and my neck hurt.  So badly.  It felt like someone was holding my neck in a vice grip and squeezing really hard.  But I was trying to power through.

Because I have to take this crappy medicine.  My last oncologist was trying to get me to five years on this one.  My new oncologist says ten years.  I just chuckle and say “Ok”.  But I don’t mean it.  There is no way I can handle this kind of pain for ten years.

I schedule an annual check up with my primary physician, who I was just meeting.  Golly, I hate moving.  I hate finding new doctors.  So I am meeting this new doctor and I basically start crying.  Ugly crying.  I tell her how much pain I am in and all the dark thoughts floating through my brain no matter how much I meditate.

And I told her about the research I had done and how Effexor is supposed to help with Aromasin side effects.  I told her I took Lexapro (an antidepressant) for 5 years but stopped taking it five years ago, right before I was diagnosed.  We decided to try Lexapro again.

And you know what?  It has helped tremendously.  It was not instant but within a week or two, the pain was much more manageable.  My mood improved ten-fold.  My kids noticed.  Things are looking up.

But my question is why?  Why would an anti depressant help my neck and joint pain?  Is the pain not real?  What is going on?

I get it fixing my negative thoughts and low moods but neck pain?  Why?

No one seems to know but I’m glad it is working.  I felt so hopeless.  The Aromasin may keep the cancer from recurring but what is the point if you live life in constant pain and are unpleasant to be around?

I wish I could get off this ride.

I went for my quarterly Oncology check in.  I have been going every three months since treatment ended in December of 2013.  Every. Three. Months.

The main reason why my visits have remained so frequent is because of all of the pitfalls I have experienced; weird stuff in my lung, struggling with antihormonal medication, surgeries, switching oncologists, firing my oncologist and finding a new one, moving across the country.

I usually don’t mind the visits.  I go in.  We talk. I disrobe.  The doctor feels me up for lumps and bumps.  It’s not a big deal.

I like my new doctor here in MN.  I mostly love the practice.  I do not love the scheduling process. For whatever reason, I am often unable to schedule the next visit on the day of my most recent visit.  Three months is too far out so they tell me I have to call.  But their calling system is horrible.  It takes forever to get connected to the scheduler and then they put you on hold and…hang up on you.  Accidentally, of course.  But it blows.  It is so bad that often I just show up to the office in person to schedule because it’s easier.  It’s easier to drive 25 minutes to the office than to call.

But there is even a problem with that.  Most of the schedulers are very nice, accommodating and kind (qualities I feel are critical when dealing with cancer patients).  But there is one woman scheduler who is just awful.  She is sour and curt and unpleasant.  I can only assume that she is a friend, relative or spouse of some higher up at the medical practice because I honestly have no other idea how she got this job.  She is just awful.

Anyway, I realized I was overdue for a checkup when I got a letter from the practice reminding me to make an appointment.  Oops.  So I called…and then lost an hour of my life.  I was placed on hold, hung up on, transferred to nothing numbers and then hung up on again.  45 minutes in, I lost my patience.

There was a lot of confusion because my oncologist was out on maternity leave.  I told them I didn’t care who I saw, that I just needed to get in.  But apparently, my flexibility was causing mayhem.  I am still not sure why.

“Listen,” I told the operator,”I am trying to make a simple appointment, it shouldn’t be this hard.”

She agreed and then promptly hung up on me, by accident.

Eventually, an appointment was made.  I would see a nurse practitioner.  All would be well.  I felt ok about it.

Then I showed up for the appointment and they had no record of it.  Not only that, the nurse practitioner wasn’t even there.  So they sent me to make a new appointment.

Guess who I had to deal with?

Yep, Ms. Sourpuss.  Golly is she unpleasant.  Ugh.  She is the worst.  In the four years of this cancer experience, Ms. Sourpuss is the most unpleasant professional I have encountered and that is saying a lot.

She made me an appointment after giving me the run around, 2 weeks out.

And then I said,”May I speak to a manager?  I really need to give someone some feedback about this experience.”

Her eyes got really big and she said, “Yes.” and went to find someone. I sat and waited.

And suddenly, this very kind person came to me and apologized for my experience.  She told me she could get me in right then and there to see a different nurse practitioner, if that was ok.

Of course it was ok.

I felt the urge to stick out my tongue at Sourpuss but I only did it in my head.

The rest of the visit was standard.  We met, we chatted, we joked around a bit.  He told me that after this visit, I would not need to be seen for 6 months.

REALLY?!  Awesome.

Yay.  I graduated!

I was happy.

Then I disrobed and got on the table.

We chatted some more while I was poked and prodded.  Right armpit.  Then left armpit.  And then there was a pause.

“Have you felt this?  This…knot?”

No.  I hadn’t.

And that’s when the weather changed.  That’s when the room started to swirl.  That’s when I closed my eyes.  I had to.

He told me I needed to schedule an ultrasound.

I asked if it was cancer.

He said he didn’t know.

I protested that the bump was on the other side from my original cancer.  It can’t jump, can it?

He said he didn’t know.

I closed my eyes again and took deep breaths.  The world around me swirled and dipped.

I made the appointment for the next morning. 7:20am.

I walked to my car. I got in.  I knew I couldn’t drive.  I texted my husband.

Me: Are you able to talk?

Him: Yes.

Me: Oncologist found a lump in my armpit.  I have to go in for an ultrasound.

Him: Calling you.

We talked.  It doesn’t have to be cancer.  We don’t know until we know.

But all I was thinking was, “How can I put those boys through this again?”

We hung up.  I sat in my car, with my eyes closed, just breathing.  Just breathing.

Eventually, I drove home.  And I pretended.  I pretended my world was not collapsing.

My husband and I texted.  We would drive to the appointment separately.  I would tell the boys I was meeting a friend for coffee.  He would tell them he had an early meeting.

The boys fell for it.

And the plan worked.  At 7:30 the next morning, I was on a table with gel on my armpit.  My eyes were closed.

They called my husband in when it was over.  The photos were on the screen.  The lump was huge.  I showed him.  It was huge. I wanted to faint.

The doctor came in.  Smiling and kind.  He explained that my lymph node was enlarged 3 centimeters.  3 centimeters?!!  What the what?  The biggest lymphnode in 2013 that HAD cancer was only 1 centimeter!  This was terrible! He then showed us that even though it was huge, it was not looking necessarily like cancer looks on an ultrasound. It was not round and the center was not black.  The node had normal fatty tissue in it.  Still he wanted a biopsy because of my history and because there was black in the node, though not much.

Through a random cancellation, I was able to get in later that morning for the biopsy.

Another doctor came and spoke with me.  He was also very nice.  He said he would guess it was benign but with my history and the size, we needed to be sure.

This biopsy was much easier than the one I had 4 years ago.  That one was crazy.  This one was much calmer.  I got numbed up and then he took five samples.  Five needles. Five clicks and done.

I was told to go home and rest.  Do nothing.  Drink wine.  Really.

I got back in my car.  I was not ready to go home.  My armpit was already starting to hurt. I would not be able to hide this.  I would have to tell the boys.

So I went to Target.  And I channelled my birth mother.  She was big on gifts.  It used to make me nuts when she would bring us all these gifts but I’ve changed my mind.  We didn’t even get ten years of her.  Those gifts take on a new meaning in hindsight.  I wish I could tell her that I finally understand.

So, yeah, I went to Target.  And I bought a Rip Stick, a badminton set, some nerf bullets, a nerf gun and some other rando stuff.  And you know what?  I actually felt better!  Shop therapy?  Who knew?

And I drove home.  And I gave the boys some gifts and told them what was going on.  I told them I didn’t know what to do so I decided to channel their grandmother.  They got it.

And we waited.  Hubby came home early.  I cooked.  I baked.  I watered my plants.  And we waited.

They said it may take two days to get the results.

I thought a lot.  If it was cancer, I decided I would get chemo.  This was a revelation.  I had been swearing I would not do chemo again.  It almost killed me and it made all my hair fall out which really sucked.  It was the worst!  But no.  I would get chemo.  For them.  I would do it.

But you know how this story ends, right?

I got a call from a very happy person, informing me that the node was not cancerous.  We both laughed and rejoiced.

I called my husband.  We told the boys and we were happy.  I texted friends and family who were in the know.  Everyone was happy.  We went out that night to see my old friend and we were happy.

This is my fourth biopsy since I finished treatment but this has been the only one that truly terrified me.  My world shifted on Monday.  It blurred.  The pain, the nausea, the anguish came rushing back and all I could do was close my eyes and breathe.

What else can you do?  Cry a little? Get angry? Eat pizza?  Pray? I did all of those things too.

But this is the nature of living through cancer.  I will probably never be out of the woods, but I don’t think I will ever be comfortable living in the woods.  Every ache, every pain, every lump or bump is now a cause for concern and sometimes even panic.  And the only choice I really have is to put my head down and get through it.  I have to meet it head on.  I do not take a single minute of this life for granted.  I can’t.  And I will do what I can to be here for my boys another day.  That is all I have.

 

I told you that we moved, right?  Yes.  We moved.

Goodbye sunny California.  We lived there for 16 years.  2000 was a big year for us.  My husband graduated business school in May of 2000, we got married in June of 2000.  3 weeks after the wedding, we drove across the country to the land of my dreams. See, my family took a huge vacation to California when I was seven and it stuck with me.  I wanted so badly all my life to live there and finally in 2000, my dream came true.  California was my home and I loved it.

It’s beautiful.  Just a beautiful place full of beautiful people…many of whom are quirkier than me…which is saying a lot.

But it’s gotten really hot there.  And the drought.  And the traffic is crazy.  And the expense.  California is expensive.

And we moved… to Minnesota.  Yes.  Minnesota.

And we are doing ok.  Mostly.

I’m a weirdo here.  I’ve found a few of my people but my weirdness sticks out like a sore thumb.  But I have decided not to change.

It is beautiful here.  Winter was tough at the end because of all the grey.  Everything was grey, especially the sunlight and it was difficult. I got depressed and didn’t even know it…until we took a trip back to California…AAAAAHHH!  The golden sunlight healed my sad brain.  Good stuff.

One of the worst parts of moving was finding all new doctors.  I like to stick with what I know and if you remember, I had found and oncologist in SF that I loved so much.  I considered keeping her and flying to SF for appointments.  But that just isn’t realistic and if I did end up having a recurrence (bite your tongue!) commuting to SF from Minnesota would just be ridiculous.

So I put on my big girl pants and found a new oncologist.  And I like her.  She’s pretty good.  One of the first things she did was order a bone density scan.  Aromasin can sap the bones of calcium so it was a necessary check.

The dexascan was a no biggie.  No dyes to inject.  It didn’t take long and was fairly noninvasive.  I just laid there while the machine scanned me.

And guess what?!  I have moderate osteopenia.  Blergh.

My bones are depleted.  Not as much as a person with osteoperosis but enough to be noticeable on a scan.

My oncologist recommended Zometa.  It’s a bone strengthener that has also shown promise in preventing a recurrence in the bones. I am to get it once every six months for the next two years.

But I had to get it as an infusion in the chemo room.  Not so fun.  Going back in that infusion room can be triggering.  There is some trauma around that period in my life and the infusion room is not the funnest place.

My first oncologist had told us what a happy place the infusion room is.  With everyone laughing and talking and reading magazines. Yeah… She was full of shit.

It is not a party.  We’re all there getting filled with medicine that might save our lives but believe me, it’s no party.  We’re all just trying to get through.  Everyone is tired and sick and not very talkative.  Except me.  I’m always talkative.

My husband is still annoyed by the party depiction.  He really believed her bullshit story so he’s a little bitter about the reality of the chemo room.  “Some party”.

Anyhoo, we moved into our new house in October and about three days later, I had my first infusion of Zometa.

And it sucked.  So bad.  So very bad.

I got the lobster pinches I associate with Taxol.  It felt like a lobster was randomly pinching me all over my body.  It started out slowly.  A pinch here.  A pinch there and then it began to speed up until I was just one big continuous pinch.

Tylenol and Advil couldn’t touch it.  The pain got pretty intense.  I was also feeling really weak.  It was not fun and it lasted a little over a week.

Every time I get really sick, I get a bit traumatized.  I mean, it takes me right back to the days of chemo.  But I got through it.  It helped that I wouldn’t get the next dose for 6 months.  I had time to forget about it.

But six months came and went quickly and here I was due for another round of crap.  I talked to my oncologist about the intense pain I experienced last time.  Her eyes got really big and she seemed flustered.  She assured me that the next round would not be as bad as the first one but told me to speak with the nurses about making it easier.

Ok.  I planned to do that but I am nothing if not proactive so I talked to my friend who has been through many rounds of Zometa. I reached out to her on Facebook… And here is what she told me.

1.Take Benadryl before the infusion.

2. Ask for the infusion to be on super slow drip so instead of it pouring in for 15 minutes, have them draw it out to 45 minutes.

3. Ask for fluids in the iv after the Zometa is finished.

I did all of these things.  The nurse was very understanding and did everything I asked.  She also offered to contact my oncologist but I explained that my oncologist knew about my pain and didn’t have much to offer and told me to talk to her.

I returned home and took a Claritin and then slept for four hours.  I started taking Advil right away too.

My friend then commented that she took Prednisone on the first day and hey, what do you know, I have some of that!  So after calling the nurse, I took 10 milligrams of that.

And you know what? It’s 24 hours later and I feel pretty good!

Oncology is interesting.  My first oncologist knew her stuff and she was tough and really good at measuring doses and doing checkups but her nurse was the one who helped us through all the crazy side effects.  My second oncologist was an arrogant butt head.  My third oncologist was awesome and had excellent support staff but I never had any infusions with her.  My new oncologist also seems to know what she is doing but acted like a deer in headlights when I brought up side effects.  I had forgotten that side effects aren’t necessarily what oncologists deal with.  You think the oncologist is the expert on everything but really, they are the ones who figure out the doses and medications and their support staff are the ones who get you through it all.

My best advice is to ask people like my friend what worked for them to get them through.  Crowd source cancer treatment.  Who would have thought?

Of course, you should also check with the professionals and don’t do anything dangerous or stupid.

Or maybe I feel ok because my oncologist was right after all.  The first time was just the worst time and now it’s going to be smooth sailing. That would be awesome.