Monthly Archives: May 2016

But then THIS happened…

May 18, 2016

So how are you guys doing with those snacks?  Still working on them?  I appreciate you all not crunching too loudly – sometimes it’s hard to hear my own thoughts when I have distracting crunching or smacking sounds.  So thanks for that.

Well, after getting the shots in my back last week, I was thrilled to be able to move around better and get some work done.  A few weeks before last, I had made several other appointments that were either past due or soon coming up.  I made an appointment with my thyroid doctor (also the best breast surgeon in the world, who did my mastectomy and port) for my annual checkup to check my levels since she took out my thyroid in 2014.  I also made an appointment, those weeks ago, with my oncologist for my six month checkup.  I went and did bloodwork there last Monday, and was due to go to my appointment with the oncologist on Friday – but I missed it because I had put it on the wrong date in my calendar.

So, Monday, 5/16, I went to my appointment with the thyroid doctor.  Now, when she took out my thyroid in 2014, we knew that there had been an old, calcified nodule on it (part of why the thyroid had to be removed).  Pathology came back with cancer – 8mm of cancer that was encapsulated inside of the nodule.  But because it was smaller than 10 mm, no further treatment was needed.  I would just have to come in every six months for the first year, and then annually after that.  No big. No problem.

I went in, looking to have a short, 15 minute visit with one of my favorite docs, and then be on my merry way for the rest of the day.  The first thing that she does is lay me down and ultrasound my throat, to make sure that nothing had escaped into my parathyroid, I believe.  So I’m watching her do the ultrasound, as she has a big screen on the wall for patients to see.  She wasn’t saying anything, and when I looked over, her brow was furrowed and her hand was over her mouth, deep in thought.  Then she said, “Hey sit up and let me try it that way.”  So I sit up.  She continues to ultrasound me, and finally points to the screen.  “I’m concerned about these,” pointing at some dark circles.  They were fairly big, to me, and I asked her what she thought they were.  “Cancer,” was her reply.  Wait, what?  Cancer.

How can this be??  I have come to all of my appointments, and I have been cleared every time – from both my oncologist and thyroid doctors.  What in the actual hell?  I went in for a normal, routine appointment!  Stop, wait!  No!  There MUST be some mistake!  I sat down in a chair as one doctor went to the phone and called the other doctor.  She (thyroid doc) calls Texas Oncology, explains who she is and asks to speak to my oncologist.  She is briefly put on hold, and a few minutes later, he is on the speaker.  The two of them confer and consult, learning that my numbers that had previously always been in normal ranges had apparently come back high last week.  He said he had made a note to call me, since I had missed my appointment on Friday to go over the bloodwork.  Well, SHIT.  Together they agreed that I indeed am having a recurrence, and now we know where it is located.  She said that she could do a biopsy right then, right there, in her office; but after conferring with my oncologist, they decided that getting me in under general anesthesia for an excision of one of the masses/lymph nodes was a better idea.  Next thing I know, I am texting Erikka at work (which I later felt horrible for doing):

Me – Something is wrong.

She – What?

Me – I have a mass.

She – What? Where?

Me – Right side of my throat.  All of the throat clearing. She wants to biopsy right here. Now.  She thinks it is cancer. I can’t call you because I will go hysterical.

She – I will come get you.

Me – She is on the phone with Perez and he is saying my tumor markers are elevated.  They are both comparing numbers and such – recurrence.

Me – No biopsy today.  They want it done under anesthesia.  This week.

She – Do I need to come home? When can they get you in?

Me – We are scheduling.  Tomorrow or Wednesday. Which works for you?

She – Tomorrow.

Me – 1:30 tomorrow.

She – Do you want me to come home?

Me – Only if you want to.  I’m kind of in shock and just want to lie down.

She – Be there at 1:30 or biopsy at 1:30?

Me – Be there at 1:30.  Surgery at 2:30.

She – Do you want me to tell your mom or are you going to?

Me – I don’t think I can.

She – That’s what I was thinking.  I will take care of it.  I got this.

Me – I’m sorry I told you on text.  And there are three masses on lymph nodes in my neck.  She is removing one lymph node.

She – It’s okay.

Me – I’m so scared.

She – Don’t be scared.  Let me take care of you.

So let me just insert here that I have the most amazing, most supportive, most giving, most selfless wife in the world.  She kept me from completely losing my shit while in the doctor’s office, simply with those eight words:  “Don’t be scared.  Let me take care of you.”  Because of her, I was able to get things scheduled in a calm fashion.  Once I made my co-pay and scheduled the procedure, I got to my car as quickly as I could so that nobody else had to witness the meltdown that followed.  I just wanted to kick and scream, “NO NO NO…I don’t WANNA do this again!!  NO!”  

The next day, Tuesday, we got to the surgery center around 1 PM.  Got checked in, and didn’t have much time before I was taken back, gowned up, and IV in.  The nurses that I had were awesome and amazing, and kept me smiling and laughing, which really helped in that moment.  That moment when you know that something is really very wrong, and you’re scared to death, but know that you have no choice but to face it head on.  Soon after, they brought Erikka back to sit with me, and I could see all over her face that this time was different.  She looked scared, but didn’t want to say it. Her beautiful blue eyes glistened with tears that she didn’t want to let fall.  I promised her that this time would be different, if I have to do treatment again.  I promised her that the last time taught me how important it is that the caregiver be taken care of, too, because it isn’t just happening to me, but that she is going through it, too.

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Soon, the doctor appeared and talked to us about what she would be doing.  She was going to remove one of the three masses (the largest, I believe, at 4 cm) along with the lymph node it was affecting.  She said that if we had to pick what cancer we wanted it to be, then we wanted it to be thyroid.  Easy to treat – she would just have to go in and take out all of the masses, and quarantine me for three days in the hospital for radioactive iodine pills (oral radiation).  That’s the treatment.  Easy peasy.  Or it could be breast cancer that has metastasized to the lymph nodes in my throat.  This would mean chemo again, but likely no radiation because I believe that I maxed out on that during the last round.  So okay.  We would be hoping for the lesser of two evils.  I would be going to sleep with the hope of it being thyroid cancer on my mind.  I remember everyone being there – the OR nurse, the anesthesiologist and his assistant, Erikka, my doc – so I knew it was time.  I asked for a moment with Erikka as they put the “cocktail” in my IV to make me relax.  We tearfully kissed and said our “I love yous” and I was rolled away.  This time seemed scarier to me, knowing that the mass that she was going to remove was sitting on my jugular.  Oh and scarier because I knew that no matter what she found, at the end of the day, I have cancer again.  All I know is that I didn’t want Erikka to leave my side, ever.  What, why couldn’t she go with me??  

I woke up in recovery, immediately touching a new wound on my neck and wincing from the horrible pain.  I remember a nurse putting demarol into my IV and I was out again.  When I woke up the second time, Erikka was in a chair beside me.  When I was awake enough, she told me that the doctor came out to talk to her after surgery, and told her that it did NOT look like thyroid cancer.  My heart sank.  Well shit.  After a little while, I had my IV removed and Erikka helped me get dressed.  I just wanted some food, and my own bed.  Now I was just supposed to rest, let the wound heal, and wait to hear what the pathology report would say.

Yesterday, Wednesday, I stayed in bed like a good patient.  The pain was worse, once the numbing effects of surgery had gone away.  It hurts to turn my head.  It hurts to chew.  It hurts to try and pick anything up of any weight at all.  It’s crazy how much I didn’t realize how often we use the muscles in our neck when doing anything!  Erikka stayed home with me, which I was so grateful for; I only wish she could stay with me 24/7 while we deal with this.  When the time came in the afternoon, she left for a little while to pickup Noah from school, go to the store, and pickup Harrison from school.  It was during that time, while she was out, that the doctor called.  She had the initial pathology (that she had had rushed), and it came back that the cancer cells indicate breast cancer, not thyroid like I had hoped.  I asked her what stage it was, because she had said that this biopsy would be used to stage me.  She didn’t seem to want to answer me, but she did:  Stage 4.  WHAT???  Stage 4??  That’s like, the WORST STAGE!  She told me to please try not to worry about it too much, because it is automatically staged at 4 when it moves outside of the original area.  In my case, had it been thyroid cancer, it would probably have been a lower number because it is in the neck area where the thyroid was.  But because the cells indicate breast cancer, and it is way outside of the breast area, or the area under my arms where lymph nodes are, then it is stage 4.  And I will have to have a PET scan to make sure it isn’t anywhere else in the body.  All I could think was, “Well SHIT.  Breast cancer.  In my NECK.  What in the ever-lovin’ hell??  That is some bullshit!”  I told Erikka what the doc said about the stage, and she was calm, already aware that it would be staged that way.  

So here we are.  Monday morning my life was fairly boring and normal.  By lunchtime it had been turned upside down, when the rug was pulled out from under me.  I went from survivor in remission to recurrence patient.  Every fear that I had before has returned, plus some.  We have watched several of our friends over the past couple of years battle recurrences to no avail, only to watch them deteriorate and lose their battle. It’s hard not to be terrified.

Now what?  Here is what has to happen over the next few weeks:

  • PET scan, to see if it is anywhere else in my body (and dear God I hope not)
  • Appt. w/Oncologist – this is scheduled already, for next week, Thursday 5/26
  • Day surgery to put a port back in

That’s pretty much all I have to go on right now.  We will make a plan once I visit my oncologist.  If you have tried to call and I haven’t answered, don’t take it personally or get offended.  I just haven’t wanted to talk to anyone, because I get emotional and it actually hurts my neck if I start crying – especially if I start UGLY crying!

This is my, "Damn. Here we go again" face. Sigh.
This is my, “Damn. Here we go again” face. Sigh.

People will want to know and will start asking what we need or what they can do.  Right now it is early, so we have no answers really.  But once treatment starts, there are things that I know will be helpful to me and my family.  My main request is that my darling Erikka not become overwhelmed with having to work, plus take care of me AND the kids.  There will be times that it will be great for someone to take our very active little Harrison for short visits or outings so that Erikka can have a break (for instance, on chemo weeks when I will likely need her with me).  There might be times when it would be nice to have dinners for Erikka and the kids, since I am primarily the one who cooks, and I don’t want her to have to order out all the time.  Please, this is what I am asking.  Take care of her and my babies, since they will be taking care of me.  Hopefully we can get started quickly and knock it out swiftly, and get back to our lives.  We didn’t invite stupid f&*king cancer the last time it showed up, and we certainly didn’t invite it back for a second tour.  But nevertheless, it is here, so we just want to make its stay as short as possible.  We know that we have all the support and love that we will ever need, and I am more thankful for our tribe than any of you will ever know.  Once the shock wears off, I will change to battle stance, and keep everyone apprised of where we are in our course.  Please be patient with us.  Last time, when I found a lump, there really weren’t any unexpected surprises; by the time I got my diagnosis, I pretty much already knew what I was looking at.  Being blindsided is a whole different ballgame.  There are too many unknowns right now.  But as soon as they become known, we will share.

Man…I’m SO pissed off!  I just got my hair to where I like it again!  Son of a bitch, fu&*ing cancer…I hate you!  Well, at least I can finally have that rainbow mohawk I have always wanted! (am totally going to do it when the first hairs start falling)

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So THIS happened…

May  10, 2016

So things have been funky in my body for a little while now, and after trying everything I could on my own, I finally decided that it might be time to go for medical experts to piece together what the hell is going on. What’s been going on, you might ask. Well, this could take a minute, or two…or twenty. You might want to go get a snack – maybe make some popcorn. Ooooo, or even better, NACHOS! Get yourself some soda, maybe some iced coffee or a bottle of water. Go ahead, really! I’ll wait.Okay. Everybody back now? Good, good…just keep that crunching to a minimum, will ya?
About six months ago – November 2015 – I developed a knot on my shoulder blade that hurt like hell, and was obviously NOT due to sleeping on it wrong, because it just didn’t budge. I had a massage. Then another. And another….until I had had about five or so. From two different instructors at the massage school. Neither could figure out why the main knot wasn’t moving, wasn’t loosening, wasn’t easing up on the pain; and by now they had discovered that there were several knots on both sides, both shoulder blades. I tried BioFreeze. I tried Tiger Balm. I tried Tiger Balm patches. I tried two other brands of pain patches, and wore them almost all the time for a while. I tried a heating pad – yeah, try sleeping on a heating pad when you are ALSO dealing with hot flashes from chemo-induced menopause. I tried lying on a tennis ball (some pressure point thing that I read about for loosening up stubborn muscle knots in the shoulder). THAT was brilliantly painful, and didn’t loosen the knot. I tried ibuprofen, naproxen, two different muscle relaxers, hydrocodone, tramadol, oxycodone – some did very little to nothing, some helped the pain for a few hours, but all of them only masked it for a while without changing the muscular problem at all. I finally went to my PCP to see what he can do, begging him to help me. He did an exam and decided to do a trigger point injection of lidocaine into the worst knot, in an attempt to make it relax. The result? A big fat plate of NOTHING. He recommended that I see a pain doctor. So I made several attempts the following week to get an appointment, at several different pain doc clinics, to no avail. It was crazy – NONE of them would call me back!

Then one weekend we were at a friend’s house, and she (a massage therapist) was working on my knot when she told me that she thought that I have what is called Frozen Shoulder. I had never heard of it, but when I did some research I learned that it can happen after mastectomy. But to properly diagnose and treat frozen shoulder, one must visit an orthopedic doctor. Just picture a dog, at this point, running in a circle and chasing its tail. That dog would be me. I got in with an ortho doc, who determined that it was indeed NOT frozen shoulder; and told me that I should go see a pain management doctor. <head explosion here> Oh sure ortho doc. Let me get right on that, especially when I can’t get a person to answer the phone at any of them, much less get an appointment with one. So they said they could help me get the appointment, and they were going to attempt a trigger point injection on the outside of my shoulder, directly into the bursa with not just lidocaine, but also some pain meds and a steroid. The result? Another big fat plate of NOTHING.

But by the following week, I had an appointment with a pain medicine doctor, but very little hope that anything would come of it. He did x-rays, examination, and some tests for strength, reflex, and agility. His diagnosis was Myofascial Pain Syndrome, and said that it was likely connected to the nerve pain that I was having across my chest, and that both the breast pain AND the back pain/knots were connected to all of the surgeries and incisions I have had in the past three years. Finally, some hope! He told me that he was going to give me several shots into the knots in my back, and that he wanted me to come back at the end of the month; if the shots helped, we could repeat them. And then, the doctor said, we will talk about me going to one of the other docs in the practice for Botox injections in my back – they paralyze the muscle and would force the muscles/knots to relax. YES! DO IT! He ended up doing four shots into my knots of something stronger than lidocaine, along with pain meds and a steroid. Within an hour I had a good amount of relief, and as the day went on I could move around significantly better than I had in months. This relief lasted three days before the pain in the knots started to return, but it wasn’t anywhere near the pain levels that it had been before the shots. So that’s where we are on THAT.
To be continued….