Sunday, May 31, 2015

Almost June

I can't believe tomorrow is June first.

In many ways, the past few months since my diagnosis have dragged on at a snail's pace.  The anxiety, the struggle, the uncertainty, the abject terror.....

But, when I look at the calendar, it also seems to have flown by in an eyeblink.  That may be because, with every step, I have worked THROUGH the anxiety, the struggle, the anxiety, and the abject terror, and managed to beat them back with my warrior attitide.

This past week has been pretty good.

The body pain I was experiencing last weekend was finally mostly gone by Tuesday morning.  The nurse called me to follow up, and I told her how it had started a couple of hours after the on-body injection device had administered the immune booster med.

She said she would talk to the doctor, and that we would probably not use that the next time, and instead, give me the weekend in between treatment and manual injection of the same medication, so that we can see which causes the reaction, IF it happens again at all.

That does mean that I will have to miss a little work to go back to the clinic on Monday, but it will be worth it if we can come up with a solution.

I am pleased that my comfort is of utmost importance to my care team.  They want me to thrive and go on living my life through this.

My appetite has returned to normal, my peristaltic process has returned to normal, and the only ongoing thing I am feeling is that weird ache in my trachea when I take a really deep breath, or change body position.

I have started my morning work outs again, and have been taking walks at break time when the weather has permitted.

My scalp is still covered with hair, and I am still having to shave my legs and underarms (that brings a very specific set of new challenges!).

However, I can count the number of eyelashes I have left, my eyebrows are so thin that I need to draw them on, and my nasal hairs have become so sparse that my nose drips at the most inopportune moments.

Fortunately, for all but the embarrassing drippy nose, there is a make up technique to make these things less noticeable.

I do get tired a bit more easily, but it's nothing like it could be.

Tomorrow marks 10 days since treatment, and I think the biggest triumph is that I never got chemo mouth!  Food still tastes normal.  YAY!

The sun is supposed to come out today, but it hasn't yet.  I hope it does.  I'd like to go out and make some natural vitamin D!

I have to admit, though, I am VERY happy that it's almost June, and it hasn't been 100 degrees yet!
 

Sunday, May 24, 2015

Sunday Rainy day (running out of title ideas much?)

Well, I think our several years long drought has been eradicated.  It's been raining and flooding in these parts for days.

I wonder if my office is under water.  Haven't heard yet.

SO....On Friday, I received my first round of chemotherapy with the new medication, and an additional injection of something a day later that was given via this cool gizmo that attached to my arm.

The new regime takes 4 hours now.  Ugh.

Thus far, I seem to be having only a couple of side effects.  Constipation (with the original cocktail of medication, it was the opposite), and a redness and swelling in my face that started a few hours after the injection device ran it's course yesterday.

I was concerned enough about the facial swelling to call the on call doc at the clinic, just to be sure there was nothing to worry about.  She said she thinks it's probably not the injection, but the amount of steroid that was given with the new chemo medication.

She did not indicate any concern about it, and said it should clear up by tomorrow.

I took a benadryl, and it's improving already.

Seems it was just a coincidence that it started after the injection, but we'll see what my doctor has to say about it when I see him before the next round.

All in all, though, I am feeling fine.  No nausea, and no other side effects so far other than what I mentioned above.  *high five*

(addendum, several hours later:  I am having this odd sensation...the skin of the back of my torso hurts and is flushed red, too.  Not fun.  Not at all.  Took ibuprofen, it seems to help a tiny bit. Hoping this goes away quickly, but it's been with me for about 6 hours so far.... ugh.)

The purpose of the additional injection 27 hours after treatment is to boost white blood cell count.  The new medication is a lot stronger, and can trash your immune system.  This additional medication blocks that action by stimulating the while cells.  It can cause facial swelling and redness, and most of the other possible side effects associated with chemo, with the addition of bone pain and spleen swelling or rupture.  Whee.

For patients who get treatment on days that are not followed by weekends or holidays (or both, in my case this time), they are required to go back to the clinic to receive the injection, and miss more time off of work to do so.

I am kind of glad that I will be able to use the little device, even if it was a pain to have to wear it on my arm for so long.  It's uncomfortable and worrisome, but it's better than having to go to the clinic two days in a row.

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We were hoping to go to the Paseo Arts Festival this weekend, but because of the widespread flooding, we're hesitant to leave the house.  If we leave while the streets are clear, and then it pours, the streets to get home may not be passable, AND it's already pouring

What fun is an arts festival in the pouring rain?

I feel for the artists who spent money to participate, as I am sure turn out has been exceptionally low.
I am sad to miss it, but oh well.  We got to go last year, and it rained then too, but not like this!!

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My experiment with changing the cats' play/eat/sleep routine seems to be having a positive impact on Pete.

He's been horrible about waking us up in the middle of the night..well, waking ME up, mostly.  So I decided to completely change the eating schedule to see if that would work.

Instead of feeding them their moist food when we get home from work, or around that time on the weekends, we are withholding food until bed time.

What I have been doing for my cats for years is feed after work/early evening.  Play at bedtime, then a bit of kibble to hold them through the night.

It has worked well for previous cats, but not for Pete.

Now we will not feed until after bedtime playing.  THEN, we set up one of our automatic feeders that we got for when we travel, and it goes off at 4:30 am.

The intent is to keep Pete down for the count, so that he stops waking me up in the early morning hours EVERY day.

What has been happening is that every morning, somehow he knows when it is exactly 3 am, and Pete starts flinging himself on my head and face, walking ON my head, laying ON my head, etc.

A 15 pound cat on your face is not sleep-friendly.    Cat experts say to just ignore it...but how the hell are you supposed to do that??

The later, "second waking" is usually when Pete gives up on getting me up to participate in whatever it is he wants, so he works on getting Annabel involved in fighting.  This part usually starts between 4 and 5 am.

The result is that there is much growling, hissing, and general chaos during the "second waking up" period, which then usually wakes Dave up, too, because the cats keep jumping on and off of the bed, and bouncing off of the foot of the bed, etc.

The new plan seems to have worked somewhat when we did it for the first time Friday night (Pete still woke me at 3, but more gently, and the second waking up was not as chaotic), and it worked even better last night/this morning.

This morning, Pete did not wake me until 4, and then it was not with the usual emphatic attention to my head.  He merely crawled onto my up-facing side, and snuggled and purred.

After their 4:30 automated breakfast, he left us alone, and he did not go after Annabel to get her riled up, and I was able to sleep until 9:30 (much needed after being sleepless on Friday night mostly because of the new chemo anxiety.)  It was like a miracle.

I am very hopeful that this behavior modification will continue to improve our little family's quality of life!!

I find it encouraging that I had a LOT more to say about Pete and cat behavior modification than I had to say about chemotherapy!

Everyone have a good day, I'll update you again next weekend!

Sunday, May 17, 2015

It's about timing....

I had my blood draw and doctor visit on Thursday, in anticipation of resuming chemotherapy on Friday.

The doc was talking about the schedule, and I piped up and mentioned that we have a trip scheduled for July Fourth weekend.

I told him what the trip was for (The Fare Thee Well concert by the remaining members of the Grateful Dead, previously mentioned in my post titled "So this thing happened" from February), and that people had raised the money to make it possible not only for us to go, but for us to pay for lodging the night of the show, and food, and a limo to get to and from the venue.

He said "Let me make you a deal you can't refuse."  He turned to the calendar, and he manipulated my chemo schedule so that everything will work out perfectly.

Not only will I not miss any labs or treatments, but I will be going when I am on the "upswing" part of that cycle.

He delayed resuming therapy until NEXT Friday, so I have been given an extra week's reprieve to be able to taste my food and continue to heal from surgery.

My window of post surgical opportunity to target resuming chemo is 6 weeks long, and we will be starting on week 5, so it's all good.

I woke up this morning completely pain free for the first time.  This past Wednesday was exactly 4 weeks since surgery, so I'd say that's pretty good progress.

Doing my stretches multiple times per day has helped, though I have to wonder if I will ever be able to move all the way through my previous range of motion.

The body is pretty amazing, though, and skin stretches.  I've also been able to get past touching my chest, and have been applying generous amounts of body butter to the incisions and all around them to make it more comfortable to stretch.  It's helping a lot.

Anyway....I am a bit anxious about the port being used for the first time, and about the new medication.

This one has a nick name.  It's called "the Red Devil."

This drug can cause heart damage, so they will be closely monitoring my cardiac health during the process.  All I can do is trust my doctor implicitly, and have faith that he knows how much of this medication will work AND be safe for me at the same time.

Chances of being sick on Red Devil are a lot higher, too.  Trying not to think about that, and I have medications for that if it DOES happen.  My nurse said that, since I tolerated the first medications so well, chances are good that I will continue to be a rock star.

Once I am finished with 4 cycles of that nasty stuff, I will be in the home stretch.  The final 4 cycles will be a milder cocktail.

Then, after that, I will be on an oral medication similar to Tamoxifen. Since I am suddenly post menopausal, I will get the version of it that does NOT cause uterine tumors!  Lucky me.  *wink*

In other news, I will also go ahead and get fitted for prosthetic breasts.  I may want them at some point, and the insurance pays for 2 sets per year...so why not?

I can say for sure that my clothes don't fit, and I went out yesterday and tried on stuff that I thought might mask the flat and slightly concave chest, but nothing looks right. Necklines drop WAY too low because there's nothing there to hold them up, and stuff drapes wrong.

No big surprise, but the ideas I had did not work.

So, if I have the falsies, I can decide which days are flat days and which days are boob days, depending on what I want to wear.

I went out Friday night without a head covering for the first time in ages.  That's because my hair is growing in thick and fast, and most of my scalp doesn't show anymore.  It was nice to be able to go out and not be hot because my head is covered

Unfortunately, though, my hair IS going to all fall out again.  The first time, it started 10 days after my first treatment....so I anticipate this will happen again.

Lastly, my doctor gave me a new prescription for something that should help with the sudden onset of menopause symptoms, especially hot flashes and night sweats.  I've been having more and more trouble sleeping lately because of that.

The prescription is actually a very low dose of a blood pressure medication.  Weird.

It seems to be helping, though, and hopefully, I won't need it for long.  He said I can also take evening primrose oil, so I got some of that and started on it right away, too.

Last night I slept past 1 am without a night sweat!  First time in weeks.

Today is a day without rain, so Dave is finally mowing the overgrown lawn, and I am going to tidy and clean house a bit.

We are very grateful for all of the rain we've gotten.  Central Oklahoma is no longer in a state of exceptional drought because of it....hopefully, that isn't just temporary.










Sunday, May 10, 2015

Rainy days and Sundays

We have had an epic amount of rain over the past week!  Even had one day when 17 tornadoes touched down in the state, 10 of which were in this county.

So much for our quiet storm season!

My big step forward for today is that I was able to rub body moisturizer into my chest area.

The skin around the incisions is dry and flaky from being stretched, and the incisions themselves are drying out.  I am hoping that greasing everything up with natural oils will help make the stretching out process more comfortable.

Taking off the steri strips helped when it was time for that...now it's time for this.

The surgeon told me that I should start doing this, but I had not thought I could touch myself, so I had not done it.  I was going to ask Dave to do it for me.

But then I figured, I can actually gaze at myself in the mirror now, not just glance.  I should be able to touch my own body.

It's part of getting back to loving my body, and living fully IN my body, which is necessary if I am to completely heal.

SO-- I did it.  The numbness wasn't as weird as I thought it would be.  It's not as weird as when I am in the shower and the shower pouf or wash cloth is being rubbed over my numbness.

I thought it would be worse than that, but it was actually easier.  PROGRESS!!

I also have noticed that ALL of my hair is growing back....except my eyebrows.  I am back to having to shave my legs and underarms.

Went to work on Friday.  There were flowers waiting for me, and a mis-spelled sign taped up in my cube.  It said "Welome back, we missed you."

SO cute.

I made it through the day.  Sorted through 357 emails, did my daily tasks, and made a list of things that were either done wrong while I was gone and need to be RE done, or things that fell by the way side.  That took the rest of the day.

It is going to take me a while to catch up.

At the end of the day, I was EXHAUSTED.  Facing the prospect of four days in a row next week is a little scary, but I have to get my strength back.

Only 4 days next week because at the end of next week, I start the next course of chemotherapy.

The really amazing thing about my workday on Friday was what my boss told me.

Apparently, someone went to the mat for me with the top brass, and got the "time sharing" policy reinstated on my behalf.

My co workers can donate sick and vacation hours to me so that I can be paid when I have to be off for cancer treatment.

My next pay check will be full, instead of only for 6 hours.  The one after that is only 3 days short at this point, instead of being completely empty.

I was stunned, and so very very emotional when she told me that I burst into tears.  I told her that lost wages was the thing I had been worrying about the most.  (The fund raisers people have done have been great, but they would only have made up a portion of a missing paycheck. )

Then she apologized for not telling me before I was off for 3 weeks, believing that I wasn't going to be paid for a big chunk of that time off.

YA THINK?!

But, be that as it may, the program will be ongoing so that I don't have to keep worrying about using up my hours as soon as I earn them, and since my first day off is already this coming Friday, that gives me a tremendous sense of peace.

Then I told her about the outing to Chicago in July, and that will be covered as well.  Wow.

I don't know which of my coworkers has donated, and unless someone comes up to me and says "I gave you a day," I will probably never find out.

So, I sent an email to everyone in the office, and I posted about it on Facebook, and now I am putting it here, so that everyone will know what an amazing group of people I have on my team.

I thought it was a big deal when they gave me a bag full of scarves and $50 to help with bills.

Then, it was a big deal that they had a luncheon for me before surgery where everyone was given pin-on buttons with my picture, and the slogan "Paula Bowen is a Fighter" on them....and they dyed half of the food items PINK. *urp*

I thought it was a big deal that some of them have worn those buttons every day since then.

But this?  This goes beyond big.

I have no words.

Anyway, happy Sunday.  I'm off to season some cast iron.....and maybe get out and plant stuff in the yard if the rain holds off long enough.

People have sent me plants and bulbs, and I need to get them in the ground!





Thursday, May 7, 2015

Office flooded

HAH...we had horrible storms in central Oklahoma yesterday, with flash flooding.

I said, mostly in jest, "maybe work will flood again, and I can stay home tomorrow."

Yep.  Bonus day off...and the good part is, I was TOLD to stay home, so they have to pay me.

Wednesday, May 6, 2015

Sunday, May 3, 2015

Recovering

This past week has been very nice.  Some days were rainy, some were sunny, all were spent resting and taking care of my body.  Walking outside on the nice days, and stretching, doing yoga, and working with hand weights every day.

I have managed to improve my arms' range of motion, but it's still limited, and some angles still hurt.

During this past week, I did a lot of coloring, and reading, and Jeopardy! watching.

I thought I would be lonely and bored, but I was not.  I made the best of what is to be my only vacation this year, albeit unpaid.

Yes, I am out of paid time off.  On the 30th, I received my last paycheck until 2 weeks after I go back to work.

Thankfully, there are a couple of internet fund raisers out there that have raised a couple hundred dollars.  That will help, and we have been prudent with the tax refund so far, so we will be okay.

I got two beautiful deliveries of flowers for my birthday, one from Margaret, and one from Dave.  They are still looking perfect all these days later!!

Dave and I went out and splurged (speaking of money *blush*) on a birthday dinner at my favorite sushi place.

Friday, I went along and we did all of the usual Friday errands.  I didn't get overly tired, but my body was sore from my earlier work out.  Instead of having date night, we came home, and I cooked dinner.

Then yesterday, we went out and did a couple of extra errands, got some potting soil and a few plants, and I spent most of the afternoon working outside.

It was heaven!!!

I potted, and re potted, and directed Dave where to dig holes to plant things in the ground, and pulled weeds.  I even got a little sun burn.

The only draw back is that I didn't do my stretching and yoga routine.  I did do some stretches, but nearly enough.

The only ill effect of the yard work is that my lower back is a bit sore from the bending and stooping.  Great exercise, though, and fresh air and sun.

Ahhhh.....

Grilled steaks for dinner, with a nice salad.

It also feels great to be getting back into cooking our own food again.  Made a brunch this morning that was oh so good....scrambled eggs, bacon, grape tomatoes, and a delicious orange.

Today, Dave will be mowing, and I am going to get out the dust mop and do the floors.  They haven't been done since Cathy was here, and I hate getting cat litter and other sundry detritus stuck to my feet.

Tomorrow morning is my pre-chemo echocardiogram mentioned in a previous post.  Then Tuesday is the surgical follow up/release to return to work.  Wednesday is my last day of medical leave.

It has gone by way too fast, if you ask me.