Uncharted territory

I was not planning on blogging tonight as I see Dr Lynn tomorrow and then all the pieces will be in place.  However, today needs a blog all to itself.

As many of you know, the first go-round I gave Dr. Kotz a run for his money.  He was the first one to utter... you are just special.  He could not for the life of him figure out why I crashed the way I did and why I bounced back like I did.  Drove him nuts.  When I started the Ibrance, I know he was worried about my white blood counts due to my history. I passed the first lab test with flying colors and my temperature never got past 99.3.  And while I have had my issues, nothing earth shattering.  Gold Star for me!

Today, I saw him for the first time since I started both the Ibrance and the shots.  I was ready with questions and I also knew something he had no clue about.  We did the usual go over things, how are the side effects and then he started the exam—which consisted of checking the neck, throat glands and the under the arm where the swollen lymph node is.  He gets to the arm area and gives me a funny look.   I said… yup—amazing, don’t you think? He checks the area again and is actually giddy.  He goes back to his notes to verify and said on October 4 it was 4 cm and today he can’t find it. That is when I let him in on it—I check it almost daily and I knew it was shrinking and it had been since staring treatment.  He was like a kid at Christmas as he could not believe it. Which is where the uncharted territory came in.  Never, ever did they think the response would be as good as this in one month. Ever.  Nor have they ever seen something like this (add another Gold Star). At this point, I can see his mind doing the thing he does best… figuring out the next steps—after surgery.  You see, it was decided the node has to come out.  The when is the missing piece I am waiting for and that will happen with Dr. Lynn tomorrow.  This is a game changer.  The radiation trial we discussed a few weeks ago, it appears I will not qualify for it as there will be nothing to radiate (however, there is a possibility of radiation, but that remains to be seen.  Hello tumor board… yet again). The meds might be changed as well, but again, that remains to be seen.  To say he was thrilled is an understatement. It was then he reminded me of the questions and I went for it. 

·        Me:  Mom reads everything, can she get the shingles shot?

·        Dr. K:  Yes, she can, as long as it is the new, dead one.

 

·        Me: After all this surgery and stuff can I take a vacation? After all I did cancel the other one.

·        Dr. K:  Yes, and sorry about that. However, it needs to be in between shots.

·        Me: Is there anything I can do for energy—and do NOT tell me to exercise.  The fatigue is killing me.  I mean, nothing at the end of the day.

·         Dr. K: Sorry, but no, it is a side effect.  If this continues, we will look at lowering the dosage of the Ibrance, but sorry nothing.

·        Me: About the flu shot...

·        Dr. K: What???!!!

·        Me: Calm down. When you told me to get it, I had just started the Ibrance and I did not want to crash.

·        Dr. K: You are getting it today.

·        Me: No. Just no.

·        Dr. K:  Yes, you are.

·        (this goes back and forth a few more times and we are now laughing as I know it is a losing cause)

·        Me:  I just had a blood draw, and I am getting 3 shots in my butt.

·        Dr. K:   This is in the arm

·        Me:  I hate you, I really hate you.

·        Dr. K:  I know. Enjoy. Let me know about the surgery and I will see you January 2. 

It is now 1040pm… a little past that time 7 years ago when I found that pesky little lump.  Never, in my wildest dreams would I have thought I would be back on this journey yet again.  Yet here I sit with my arm killing me, my butt stinging and thanking God for prayers answered and trying to wrap my mind around a giddy Dr. Kotz.   

So very, very blessed.

The time has come...

Since tomorrow is a rather big day, it is time to go back to November 1 and to finally find the words to describe my day.

It started out innocently enough.  After all, I had been coached by the Ibrance team and had read all the dos and don’ts, what side effects I should expect, so I was ready to take the plunge and my first pill.  I mean, how bad could it really be.  So, I ate my high fat breakfast (no bacon as I was too lazy to make it), took my pill and washed my hands thoroughly as I was told to do as the pill is so potent (and yes it was being ingested. Lovely).   It took maybe 5 minutes and the nausea started. I would like to suggest purchasing stock in Canada Dry Ginger Ale as it is a gift from above and it will be a part of my life for the foreseeable future.  Luckily   most days I am over that feeling by noon, but it does come and go, sometimes staying all day or just hours at a time. No rhyme or reason.  However, if I even smell an egg it is all over.  Over.  Part one over and done with; onto part two…

The shots…

Unless you are new to this or have been hiding under a rock for the past year or so, every 4 weeks I have been the recipient of a Lupron shot in alternating cheeks.   This is the shot which is a form of hormone therapy.  Of course it took a few shots for that to sink in.  I think it was the 3 or 4 shot in which it hit me it was hormonal.  I was wondering why I wanted to cry by the time I hit the light in front of the hospital.  Duh.  Anyway, long story short, the Ibrance works with Faslodex which comes in shot form.  And there are 2 shots of it given. Remember the 2 shots. It will come in handy later. Trust me.

I arrive early and am not too worried.  The Lupron shot is not that bad, so I figured I was golden.  Nope. Not even close.  As I am called in by a new nurse, we go into the “shot” room and I see the 3 shots.  Funny, but a conversation from the very first Lupron shot comes to mind, so I say very casually to the nurse—when I first started the Lupron shots, I was told about these shots that have to stay in for 1-2 minutes.  She looks at me and yup, that is the Faslodex.  She then asks me if I want another nurse in there as some people do.  I say no as I have no clue why I would want another one in there.  As she leaves to get the paper, I need to sign for the Faslodex, it hits me that if there are two nurses, then the shots are given simultaneously.  And, if they must be in that long, why the hell not.  She comes back in and I verify about the reasoning for the second nurse. I said go get her. In comes Heather, my Lupron shooter.  She is laughing as she knows me.  I tell her to bite me and get this done and over with.  And they start to do just that with one going in a tad earlier than the other. As many of you know, I talk to myself all the time.  As I am standing there with 2 shots in my butt, I muttered this is a pain in the ass and how the hell did I end up here.  Heather tries to contain herself, the new nurse has no clue and I realized I was talking out loud.  At which point one needle goes out and the Lupron goes in.  It was all over and done with in less than 3 minutes. 

Truthfully, the shots were not that bad, However, add in the Lupron and that explains the Whole Foods shopping experience as well as stopping at Duck Donuts.  The pain came later that night and lasted for about 3 days.  Luckily, I was able to sit as they had been shot into the upper muscles of the buttock.  All in all, it was doable—as is most of this stuff.

The treatment becomes every four weeks after tomorrow as far as the shots go.  Lads will be drawn tomorrow to make sure my counts are good.  Supposedly the biggest issue is low white blood counts.  I think it is the fatigue.  Which is amusing as the side effects are insomnia and fatigue.  Of course.

As to why tomorrow is a big day—I also have an MRI tomorrow morning before all the other stuff.  In order to be eligible for this Clinical Radiation trial which is apparently highly successful, they need to make sure there is nothing in the breast area, so a bilateral MRI of the breast area is being done.  I will say I enjoyed asking why bilateral if it is just a belly boob.  The person who called me said because Dr Kotz said so.  I said so you don’t argue with him either at which point he laughed and said no.   Very, very quickly.

I do not expect to hear anything from anyone until I see Dr Kotz on December 5 at which time, he will tell me what I am going to do.  Ironically, it will be 7 years to the day of me finding that pesky lump.  What a ride it has been.  Good, bad, ugly, grateful, angry, self-pity, thankful, faithful, but most of all blessed—I have felt them all and them some. 

Speaking of blessings, a few weeks ago, I had a talk with the Angels and the Sunday after the shots, they were told a kid’s friendly version which had all of us laughing.  Last week, as we were settling down and I was starting to talk about the lesson, Brett interrupted – he said—how are you doing? Are you feeling okay?  I assured them I was good, and we carried on with the lesson—which was giving thanks for our teachers.  I am so thankful I am their teacher.

Drop those drawers!

Well, the plan- for the time being, is in place and will be executed at 4:00pm, Thursday, November 1.  And yes, it involves needles and yet again, my butt.  And this time around, we are ADDING not taking away He even laughed when I said—let me guess a shot in my butt.  I swear that man thrives on needles. 

And this is how my week started… Monday, with Mae Ling riding shotgun, I met with Dr K and his arsenal of plans.  We (as I really had a choice) are going with the shots and pill plan.  I will continue to get my Lupron shot and Faslodex will be added at the same time. With a straight face, I was assured Faslodex does not have side effects.  His face may have been straight but the look in his eyes as he tried to avoid me said… you are my special one and something will pop up.  I ignored him as we got to the pill thing.  His reasoning at this point- you have been through chemo, so this will be easy. This time he was smiling.  The pill in question is Ibrance which has me entering hormonal therapy from what I gather.  I looked it up and the front page says welcome to your new normal.  Seriously???!!  I had harsh words for the person who came up with that gem. As for the side effects… kinda like a low dose chemo yet it is not a chemo pill.  Do not ask me.  I give on this crap.  Anywho…example would be hair thinning and not hair loss.  I am keeping my fingers crossed that Scarlett and Lizzie stay in their places, but that I will be able to give up shaving.  Aside from the whole saving my life thing… there has to be a benefit in there somewhere.  Back to the side effects.  The most serious one is the lowering of the white blood cells and with my record, this bothers me a bit.  I have stocked up on thermometers, so I am ready.  I am not sure how long I will be on this, but the pills are 21 days on and 7 days off. And I am not allowed grapefruit or grapefruit juice or St Johns Wort.  I told him that would be a major sacrifice on my part.  He agreed.  At this point I did ask about sugar and he said go for it.  Smart man.

At this point, we also discussed a clinical trial which is radiation to the offending node.  He feels I am a good candidate—young and in good health.  I looked at him and said aside from the whole Stage 4 thing—right. He smiled and said right.  I asked about surgery to remove the node and he said it was a possibility and he was going to call Dr Lynn and a Radiation Oncologist to discuss.  I told him I was seeing Dr Lynn in the morning and he said he would call.   That was that and off we went. 

Then came the next morning.  I left (by myself, Mae Ling was relieved of her duties for the day) rather early, yet I still encountered the traffic mess at Topsail High School.  Amazing how stupid people are.  Let’s block the green light people so traffic is backed up for miles. At this point I realized I need to call and luckily was only 10 minutes late—I did not need that grief from her.   I get called in – skipped the scales and the BP and I sat waiting.  The good Dr comes in, says you know this is a social call and I am like um, no, you and Dr K were supposed to talk. She gives me this look—and I just know.  At this point she calls him.  I have to admit it was rather entertaining from where I was sitting.  I could hear his calm voice, but I could see her rolling eyes, yet I knew both were on top of their games, listening to each other but also voicing their thoughts and opinions.  They hang up and she explains her issue with the surgery—she could do it, but she does not want to.  Because the node is on the left side and the size of it, she feels lymphedema is a given and she does not want me to have that pain.  So, we agreed she would see if it shrinks and if it gets to the point she can remove it with a good possibility of no lymphedema, she would.  I think she may have rolled her eyes.

So, that is how I will end up on November 1 with 3 shots in my butt and a pill I need to take with food the same time every day for 21 days.  There will be a blood draw and a onetime booster shot on November 15 and we will repeat the blood draw and 3 shots on December 5.  I will also have an MRI on November 15 to make sure the left breast is free of anything which would give me the go ahead for the radiation trial.  And, from what I was told by Dr K’s nurse today, I am being presented to the breast cancer tumor group.  I have been discussed by this group a few times and I should get an award or something.  Then again, living could be considered the award.  I need to ponder this.

On another note—the cruise Billy and I were going on- I was the one to pull the plug.  We were to dock in Florida the morning of November 1 and while there were a few flights (2) that might have gotten me back in time, I decided the stress of trying to get there would kill me, so it has been postponed.  

As always, I am humbled by everyone and every gesture.  A special shout out to the childhood friend who sent a ton of donuts this week.  I cried,and I will say, they were much better than those pies that were made for Joey. 

I am blessed!

Take 3

Here I go again and no, not Dolly Parton.  However, I have upped the ante this time and there is no turning back. As if I have a choice.  For those of you new to this- and since it has been 2.5 years—here is the basic cast of characters:

·        Me- no introduction needed.  Golden child on and off for the past 7 years.  On for the foreseeable future.  Never been an overachiever before now. Stage 4.  Figures.

·        Mom aka Mae Ling- queen of clean sheets, soft toilet paper, lead cheerleader and chief prayer. There is more but I would like to keep my clean sheets and soft toilet paper.  Not to mention clean underwear.

·        Billy- Cruise/Vacation giver.  I get cancer, he funds the vacations.  Score! However, he is a crappy nurse and was fired more than once.  I do admit to showing him my bald head the first go-round more than I should have, but it was enjoyable to me.

·        Dr Jones—Primary who gave me Dr Lynn, who gave me Dr Kotz and Dr Nichols.  She is awesome, and I love her. She currently has no idea this is happening, and I dread my November appointment.

·        Dr Lynn—my surgeon. A pain in the ass.  Giver and taketh awayer of Portia the Port (well, kinda). Yelling ouch when there is a needle in the vicinity never gets old.  She really does have a heart.  And rolls her eyes when she meets someone else who knows me.  Which is apparently a frequent occurrence.

·        Dr Kotz- aka Dr K.  My oncologist. My brilliant oncologist.  The man who promised to keep me safe and when I asked, to make me comfortable if ever needed. I do whatever he tells me to. Evil when it comes to suggesting colonoscopies.

·        The P’s

o   Pia—offending right incredible shrinking boob (lobbed off eventually)

o   Portia- my port—which is currently in a frame in Dr Lynn’s office

o   Pedro the pic line—got him when Portia ruptured. In a landfill somewhere.  Good riddance.

That covers the cast for a moment so onto a recap of the whole cancer crap:

1.     I found the lump myself December 5, 2011.

2.      Biopsy December 29 with Dr Lynn who uttered those famous words “I do not need a biopsy to know it is cancer.”

3.      Lumpectomy January 6,2012.  The look on her face in recovery told the story—my hair was history.

4.      January 30—started 6 rounds of chemo—lasted until end of May. Lost hair, did not have to shave and ended up on the 10^th floor 4 out of 6 chemos. Drove Dr K nuts. Portia ruptured (Dr Lynn has never had that happen—Gold Star for me!) Got Pedro for the last 2 chemos.   6.5 weeks of cremation; Labor Day weekend in hospital due to infection—of course.  That was when Pia became pia as she had to be packed-for months.

5.     Golden until April 12, 2016.  That was the 3 cm tumor which the paid Radiologist missed. The congratulations you have a clear mammogram is awaiting a frame.  I have it within reach whenever I feel boobless

6.     2017 (I don’t remember exact date as it was changed, and I want to forget the whole thing) tram to make a boob in place of Pia. Stupidest thing I ever did.  Belly boob. Still small. 

Fast forward to 2018…

Near the end of August, I found a swollen lymph node under the left arm (Pia was the right) but I was not too worried as I was to see Dr Kotz on September 12. Of course Florence had other ideas so I finally saw him October 4 and the look on his face told the story—he was worried.  And while I had to wait to see Dr. Lynn until the 11^th—a previous scheduled appointment, he did call and clued her in.  She did an ultra sound, which showed the pesky sucker and then the biopsy.  I continued the tradition of yelling ouch when she was not near me and she told me to shut up.  As usual, I ignored her.  We then talked about the possibilities and she promised to call with the results.  And she did.  It was the same type as what Pia had 2 years ago.  Somehow a very miniscule cell made it across the chest and latched onto a lovely, pesky lymph node.  Which made it Stage 4.  To be clear—Stage 4 is not curable, but is it is manageable and treatable.  Needless to say, treatment as well as time left rested on the results of the PET scan.  Hell, no pressure at all here. None.  This time, I knew I was a Stage 4 going in- last time I would have been a Stage 4—big difference.  Spreading was not good as that would have considerably made a dent in my life span.  And yes, this time it was Dr Lynn who I asked if I would make it to Christmas as I already had the menu planned.  She might have rolled her eyes and choked a bit.  Anyway, on Oct 17,  I bopped on down to the Medical Mall – with Mae Ling as my wingman. Paid the bill (which incidentally made me hit my deductible.  The county starts in July, so I am impressed I am done so early), went into procedure and as I stretched out on the long bench, I promptly went to sleep during the scan.  I was told I purred and did not snore like the others that day. Then back to home to wait.  As it was in the afternoon, I figured I would not hear until Thursday morning. And since there was a Friends meeting at 9:30 I just knew I would get the call by 10.  I did—walked out and was told that aside from the obviously cancerous lymph node, it was clear.  Sadly, I was not thinking when I said so the liver and brain are clear.  Dr Lynn was silent for a moment and then the you idiot, we did not scan you brain comment was made.  I had just started to register what I had said as she regained her voice. 

So, tomorrow at 11 am I will be greeted by the vampires at Zimmer and at 1130 am I will be told what the plan is by Dr Kotz.  Yes, told.  I do not have a say in this.  I will whine if he tells me I need to cancel that short cruise Billy and I are supposed to be going on a week from today (Sunday). But not much. Then I will go to work where I will FINALLY work on that November schedule (or so I hope).

Lastly, I really am good with it all.  I have been good from the start as I know I have years.  I would also like to point out that I did not join a gym (that happened with the last 2) and I did not say now what or what next. 

I am at peace with whatever happens as well, I am a Child of God and he has me covered.