Back to chemo

 Well, the news wasn't great again.

My doctor had previously said she hoped to go with a different oral chemo to continue treatment, as the cancer has awakened and spread again.

But no.  I have to go back to the chemo chair.  

This protocol is even more frequent than the Enhertu was.  I go one day, then again 8 days later, then the day after that, I go back to get a Neulasta injection.  Then a week off, and do it all again.

She did not say for how many cycles before we scan again.

Ugh.  Neulasta was the ONLY THING that made me sick back in 2015, so I dread it.

Back to steroids and injected benadryl, too..... and back to not knowing which side effects will hit hardest.

Needless to say, I am not happy about it, but I am, as always, resolved.  Chemo works miracles, and I am ready for the next one.

My first treatment is Aug. 5th.

The day after that, house guests arrive, and I have a dentist appointment.  Both of these things have been on the calendar for many months.

I am asking the guests to delay a day, and arrive on Friday instead of Thursday.  I am not sure why they were going to come two days before the event they are coming for, which is not until Saturday.

Hopefully, they can accommodate my  needs, as I will be accommodating theirs for nearly three days right after my first treatment.  

We are in the midst of an extended heat wave.  It's been over 100, and will continue to be that hot every day for another week.

I put water out every day for the birds and bugs, though I have not seen many bugs at all.  We never had any June bugs this year, and I have not seen the usual bees and butterflies on my prairie phlox flowers.

We do, however, have a pair of Carolina Wrens building a nest in one of the hanging baskets on our front porch!  It's an odd time of year for nesting, but there they are! 

I look at it as a good omen.... I love wrens, and to me it is a sign of hope and renewed life.

We had another great week at the gym.  Dave's stamina is slowly increasing, and by Friday, we were doing 6 laps of the walking loop and 10 minutes total on two different cardio machines (rowing  and elliptical).

He is very good about letting me "coach" him, and when he wants to quit, I don't let him, and he says he needs that, so I do it when necessary!

We are hoping to go to the OKC Museum of Art this coming week. They have a special exhibit that includes one of my favorite paintings, Flaming June, by Leighton.

We will also start getting the house ready for guests, so that it's all done by the 5th, and I don't have to worry about anything in that regard after my treatment. 

Have a good week! 

Slow News Week

 ... at our house.

We got to the gym on Monday, Wednesday, and Friday.  

Dave is slowly increasing his cardio exercise, and I am coaching him on proper form, breathing, using hand weights, and stretching before and after exercise.

I also think it's good for him to be around people, even if he doesn't interact with them much, if at all. 

This coming week brings Oklahoma-style summer.... 

We will have at least two weeks of temps between 100 and 105, with heat indices in the 110 to 115 range, so having an air conditioned place to go to keep MOVING, and stay ACTIVE, is going to be SUCH a blessing!!

I had a flare up of my hip flexor tendinitis this past week, possibly from using some of the cardio equipment at the gym, but I have been able to calm it down through self-therapy techniques from my lifetime as a massage therapist.

So far today, I am virtually pain free, but will continue to pay close attention to anything at the gym that feels like it might irritate it again.

I will finally see my oncologist on Tuesday.  

Hopefully, by then, the biopsy samples will have been analyzed,  the specific new mutations identified, and presented to the research team, so that we can move on.

I can't help but feel that this chemo isn't doing anything, and that I am taking it for nothing, so I would like to get going on something different.  I'm worried about the tiny new spots in my liver, and want us to get ahead of that with a new med.

I still have zero bone mets symptoms, and the biopsy area is completely pain free now.

There's not much on the agenda for today.  Dave did some mowing and weed whacking yesterday, and plans to do a bit more today.  

I will be doing my usual laundry load of towels, and will work on my next lesson in the course I am taking.

I'm making a chicken and broccoli pasta for dinner, and, in the meantime, there will be a Cubs game to watch.

Have a great week! 

Easy Peasy

 I was desperately afraid of every aspect of the bone biopsy, but it turned out to be virtually painless in every way.

(below is an edited cross post from the book of faces, so I don't have to type it all out again)

I talked with a friend yesterday, and it helped me to realize that I am still recovering from the stress of the bone biopsy. I may be for a while, and I had not thought about it that way until she and I spoke. It could take a while, and that's OKAY!

It's really surprising to me that no one thought to tell me things that I would not have known to ask about....

Like, what kind of sedation are you talking about? NO ONE ever told me that they were just going to do conscious sedation, with fentanyl, until the very last minute, so I had no idea what to expect, and was afraid of being "put under" and waking up with extreme nausea.

I told the admitting nurse this, and she made no comment.

Then, for all I knew, based on my dad's bone biopsy 30 years ago, they were going to cut me open and take divots out of my pelvis the circumference of a pencil.

The friend who offered to bring us food, and do chores if needed, had told me that her friend had a bone biopsy that was HORRIBLY painful, and that she was "down for the count" for days.

YIKES! She reiterated it a couple of times, unintentionally making my fear deepen beyond reckoning.

The pre-op nurse came in, and took all of my vitals, and then took them again - because my heart rate was so high. I told her that I was utterly terrified because I had no idea what to expect, other than what I knew from my dad in the 90s. I also told her about my fear of waking up from anesthesia.

She made no other comment.

When I expressed my surprise that they would not order antibiotics or pain meds, no one said THEY WOULD NOT BE NECESSARY because the procedure is considered minimally invasive, and safe.

SO...when the doctor came into my pre-op room (all of this, while Dave was out of the room getting lunch), to get my consent and explain the procedure, he said they would be using a "pretty big" needle, and a drill.... so, yeah, that made me even more scared.

I pictured the huge bore needle they used to do the core biopsies on my right breast, which was akin to medieval torture, with no pain relief and no sedation.... gushing blood until noon the next day....and the bruises remained on my breast until it was removed, months later!~

All I could see in my mind was 1/8 inch holes in my pelvis, like they left in my breast.

(Aside: My left breast biopsy physician, at the same facility, was MUCH more compassionate, male, and saw to it that I was as comfortable as possible.... a complete change from the physician, named PAULA, who brutalized my right breast).

So, the doctor who would be doing the procedure on Monday didn't say that the needle and drill are actually REALLY SMALL. He was very young, and probably didn't realize that needles used in years past, even just a few years past, were MUCH BIGGER....

He didn't mention that the puncture wounds would actually be quite tiny, and would close up quickly. To him, the needle he would be using was BIG.

Sigh.....

Then, the third nurse (the one who would be prepping me for the procedure) asked me, as I was being put on the table, "have you ever had a bone biopsy before?" I answered "no," and all she said was "okay." Like...duh???

She ALSO KNEW that I was in a state of near panic with fear, because I had told her, but she said nothing to assure me that it would really be very easy to go through, and that I would not feel a thing beyond the lidocaine numbing medication being injected into my hip.

She DID tell me that she would arrange for anti nausea medications for afterward, if I needed them, but did not tell me that they were doing conscious sedation, and that I would just feel relaxed, and not go to sleep, until they were prepping me for the procedure.

NO ONE TOLD ME that it would all be relatively easy to endure, and easy to heal from, so I was completely freaked out until the fentanyl took effect. (And, I have to say, wow, that felt really good...)

Anyway.....

When the fourth nurse was getting me ready for discharge, all she told us was to leave the bandage on for a day, and that I could shower after removing it, and to not lift anything heavy. No other instructions were given. She said I would need to request those from the ordering physician!

So, I rested the remainder of Monday, and first thing on Tuesday, I messaged my oncologist's office, to request recovery guidelines, and on WEDNESDAY, I got a response.

THAT was when I learned everything I really needed to know ahead of time.... that the procedure was safe, and minimally invasive, and that the recovery would be easy, with little pain and little chance of infection, and that I could return to normal acvitity in 72 hours, including being able to take a bath or soak in a hot tub.

UGH!

All that being said, my conversation with my friend also confirmed, for me, that it takes a long time to recover from that degree of intense stress, and that it's okay to still be tired, and sore (from having to lie face down, and hold my arms over my head- "like superman flying"- for 90 minutes.)...yeah, it was a few days ago, but my neck and shoulders still freaking hurt!

The chat was good for both of us, I think, as we both went through intense "stuff" this past week from which we are still healing.

My appointment to see my oncologist isn't until the 21st. The samples were sent to an external lab to identify specific mutations in the current form of cancer that has resisted my current chemo.

Those results will then be reviewed by the research team at OU, and they will determine next steps. In the meantime, I am to keep taking the current oral chemo, even though it doesn't seem to be working.

In other news, today is our 18th anniversary! We are going to make a nice brunch for ourselves, and go out for dinner tonight. We are going to a new to us Italian restaurant that looks really good. We had a good amount of rain overnight, so it will be like a steam bath by this afternoon, but for now, the cool morning fresh air is coming through open windows. It's lovely.

Have a good week!

Tomorrow

 While I was sitting in the waiting area for my bone treatment this past week, OU Health scheduling called to set up the bone biopsy.

I completed the call right before the nurse came to take us back for my treatment.

Needless to say, between that and my anxiety about potentially having another port-access fiasco, my blood pressure was high, HAHA!

Fortunately, I got a nurse who was familiar with me and my port this time, and she was able to confidently, and accurately access my port on the first try!  That was SUCH a relief!

The treatment was easy and quick this time.

We took my b.p. after my treatment, and it had improved, as one would imagine, but still showed the deeper anxiety about having to undergo a bone biopsy.

Anyway, the appointment is tomorrow, July 6th.  I have to be there at 11:30 for a 1:30 procedure.  They said I would be sedated, and that the procedure would take place under CT guidance.  They are taking a biopsy from somewhere in the right side of my sacrum.

I have NO idea what is involved, or how badly it will hurt afterward, or for how long.

I'm also nervous about recovery from sedation, since, after my surgery in 2015, I was violently ill (dry heaves, of course) upon waking up.  It was terrible. 

So, my anxiety level has been through the roof, as you might imagine.  I had a horrible nightmare about it last night, after the illegal fireworks FINALLY stopped around 3 am

I have done a little extra cleaning with my chores this weekend, since I don't know if I will be "out of commission" next week, and will cook up a batch of spaghetti and meatballs to portion up and freeze for next week, too.

A nearby friend, whom I have helped out many, many times, has offered to be available if I need anything.   I've asked her to make a batch of avgolemono soup to portion up and freeze, too.

In other news, my eye exam went fine, but my new glasses aren't ready yet, and now I don't know when I will be able to go get them, when they ARE ready, since I have that stuff happening tomorrow.  Oh well!

We had a big storm last night, with high winds and torrential rains.   It stopped the illegal fireworks for a while, but they picked up again the second the rain stopped, and were the worst they've ever been.

I loved the 4th of July growing up.... so many fond memories....but since moving here, it's become just another day.  Dave hates it, and it's always WAY too hot, so we don't do much of anything.   We get hot dogs, and I usually make a side dish.

This year, it was Grandma's three bean salad.  I was able to find Vidalia onions, and it turned out perfectly.

It's a shame that this year's weather ruined so many celebrations across the country.  Parades and fireworks shows were canceled due to extreme heat in some places, and flooding in others.

This should have been a big deal 4th....sigh.

Oh well.  Maybe it's a reflection of what's going on in this country.

Anyway, if you have the ability, please join me in hoping/praying/intending for a painless, nausea-free procedure tomorrow, and for a swift and manageable recovery.  Thank you. 

Scan results

 Well, when I had made it to after 5 pm on Friday evening, I thought I was in the clear.

The scan process itself went just fine this past Tuesday, though the long hours of fasting ended up going even longer because the cafeteria was closed when I got out of the scan..... so we had to go find me something to eat on the way home.

Anyway, my oncologist called just after 5 on Friday.  There IS new activity in the bones, and a couple of TINY spots elsewhere (liver and supra-clavian). 

She has ordered a bone biopsy, with the sample taken from the pelvis bones, which I do NOT look forward to.  

The reason for the biopsy is to identify the specific mutations that are taking place, which are causing the current chemo to no longer be effective.

Identifying the mutations will allow for a more accurate treatment plan for the next steps.

She is still hoping that we can do a clinical trial with a different oral drug.  That would be my preference, too....

They are getting the biopsy authorized by my insurance, and then they will call me to schedule it.

To say that I am pretty much terrified of this procedure is an understatement.

But, people undergo these kinds of procedures all the time, and they recover, and so will I.  My dad had one, but that was in 1997, and I would think that the method has improved since then. I can hope, anyway.

I just do not know how I will handle that kind of pain, or dealing with a hole in my lower back.  A friend has offered to help out, if I am incapacitated for a few days.

I have NO idea what to expect yet, so my mind is full of worst-case fantasies, and it's very stressful.  I'm also remembering my first biopsies, which were like medieval torture.

I am working on narrowing my focus, as it my usual practice. It really helps me manage my anxiety.  Yesterday, it was chores and reading.  Today, there is a baseball game to watch.

ANYWAY..... I am getting my eyes checked tomorrow, as our vision insurance through COBRA expires in the next few weeks.

(Pretty sure I am seeing the dentist before that one expires, too.... )

When we went to pick out Dave's new frames, I picked mine out, too, ahead of time.  They're really cute, and quite colorful, just like me! HAHA!

We finally got a decent amount of rain on Friday night, and now we are in the sauna, with highs in the upper 90s along with the high humidity, for the foreseeable future.

Ugh.

I despise this time of year.

This weekend is Pride in a lot of cities across the country.  We have gone before to show our support, but no way are we going this year.  Sigh.

Today is to be 98 with high winds.  The trees are already whipping around, and the wind chimes are clanking.

Oh, and my next bone treatment is Wednesday.  I will go for labs on Tuesday.

I am off to put away laundry, and make some iced tea.  Have a lovely week!

Summer Solstice Greetings

 Summer Solstice is here, and with it, another high heat warning for central Oklahoma.

All of the rain predicted recently has split up and gone past us, but there is more in the forecast, so we are hoping some of it actually falls on OKC....just not enough to cause flooding, please.

We are currently in an extreme drought, so some rain is much needed.  What we got last weekend was negligeable. 

My garden boxes continue to not thrive at all..... I am thinking we got a bad batch of organic raised bed soil.  It has been very frustrating.

My PET scan has been approved, and is scheduled for next Tuesday.  REALLY hoping the news is good... that the increased reflectivity is just the chemo doing its job.

Otherwise, we will be changing medications, and starting over with a new set of side effects, which I do not relish the thought of.

Yesterday, I attended a gathering of local people taking the same courses that I am taking. We celebrated the Summer Solstice.  It was lovely, and I felt at ease, though it took a substantial amount of will power to make myself go ... alone, and to meet with strangers, some of whom I had "met" on line.

Now I have gone to one of the gatherings, and know what to expect, and hopefully will be able to go to the next one!

Some of them are held here in OKC, some are much further away, so we shall see.

We are off to a special "bacon brunch" at the local Irish Pub this morning.  I think it was scheduled for today in honor of Father's day.

Dave is looking forward to it, and I hope I can muster up a good appetite by the time we get there for our 11 o'clock reservation.

Have a good week! Happy Solstice, and Happy Father's Day to anyone reading this who celebrates those things.

"Rainy day, dream away..."

 After some brutally hot, windy days, we got the weather front they'd been promising.  It's to be a HIGH of 75 today, and it rained on and off through last night.

AHHHHHH!  The windows are open, and the fresh air smells so good!

It might rain a bit more today, too. Fingers crossed.

My oncologist said that there are some areas of "increased reflectivity" on the nuclear bone scan results, so she is working on getting a PET scan authorized by my insurance.  

To be clear, there were no NEW spots, but some of the previous spots looked different.

She is relieved that I have no new, or increased pain (mostly, I have NO pain in those areas), and just wants to be sure this is not progression of the cancer, but merely the chemo doing its job.

Unfortunately, I have to undergo another scan to make this determination, and it's the kind of scan my insurance likes to deny.

SO, we shall see.  It could take weeks to find out.

Dave had his echocardiogram on Friday, and looked at the report on MyChart on Friday evening.  All is well!  

He still has substantial swelling in his feet and ankles by the end of every day, but they usually look normal in the morning, which they were not before he started on the Lasix.  

Hopefully, the solution is that he just needs to get out of that damned chair, and be more active.

He's also decreasing his alcohol intake, which I have asked him to do for over a decade... so that's a positive change, too!

Our kitties seem to be adapting to Annabel's absence.  Frank has become MARKEDLY more affectionate, and it's a wonderful thing!

After a few days of quiet, the boys are romping and playing together again, and getting back to their normal routine.

I need to get my usual every-3-weeks blood draw on Monday, which is a walk in (no appointment needed), but other than that, neither of us has any appointments this coming week....which is lovely.  

That is, unless they get me in for the PET, which is highly doubtful.

It's supposed to be cooler for a few days, so maybe Dave can finally force himself to get out and remove the saplings and choking vines from the flower bed out front.

The new mower works really well, and he got the back yard mowed one day last week, and has effectively fired our lawn crew.

Today, I am going to do my usual Sunday things.... a little laundry, and the next lesson in my spiritual course, and maybe watch the Cubs game.  

The game is supposed to be on regular broadcast tv, and sometimes our local network affiliate channel won't show games that are with teams that aren't of local interest.  If there's a different line up for a more popular regional team, they will show that instead.

It's not fair, but then, neither are the MLB tv black outs.  Sigh.

Anyway, have a good week!