I’ve had 4 really pretty good
days this week. Monday morning started off
a little rough. I decided to wash my
hair again. That wore me SLAP OUT!! This time I took off the dressings and just
let the water run over the areas because they are so close to being healed. That did make it so much easier because I
could use both hands. This shower head
puts out a VERY strong stream.
Ordinarily, that is a good thing, but I don’t like to let that strong
stream hit my head surgical areas full blast yet. The biggest problem is that it gets so
BLAZING hot in that bathroom with the door shut for any length of time – even with
the vent fan on.
Let me digress a bit
here. This house heating and cooling is
just set up all wrong. If you get the
ground floor so that you can survive without wearing a coat and hat all day,
then the upstairs is BURNING HOT!! And
the basement……well we won’t even talk about what a freezer unit that place is. So, after Monday, I got this long stick from
the garage, and shut all the vents upstairs – in the ceiling. The rest of the week, we have been able to
sleep sooooo much better. I’ve even
starting dreaming again. I can
actually wake up in the morning feeling like I want to go and do a little
shopping. It is so much healthier to
sleep in a cool room – your nose and throat don’t become parched and dried out,
you can sleep under some covers – I can’t get to sleep unless I have something
covering me.
So, over all, I’m sleeping
much better. EXCEPT for this one HUGE
thing – and I mean HUGE!!! HOT
FLASHES!!!!!!!!!!!! I’ve been taking HRT
(hormone replacement therapy) for about 5 years. It is bioidentical hormones that are applied
topically. It took a while to find the right
dosages for each of the three hormones I was taking, but we finally got the
right combination. While trying to get
that combination, I experienced some hot flashes, but NOTIHING like what is
going on now. I had NO IDEA these things
could be so VISCIOUS!!!! They are major
life DISRUPTING!!! When I had my first
major surgery on Oct. 25th, I discontinued the hormones. I was not sure how, or if, they were
affecting my cancer, and I didn’t want to take a chance. I was surprised all this time that stopping
them didn’t seem to have an adverse effect on me – hormone-wise. Then after this 1st chemo therapy
a week ago, I don’t know if it was the chemo that killed the last tiny vestige
of hormones coming from my ovaries, or whether I had just been off the HRT long
enough that FULL-BLOWN MENOPAUSE has just hit me coincidentally. But, believe me, IT HAS HIT, and it is life-disrupting
MISERABLE!!!! They occur all day long –
sometimes twice an hour, sometimes every hour, sometimes every 2-3 hours. They
occur all night every time I move or turn over.
If I could lie in one spot all night long, it would be great, but that
is just not possible. If it were not for
this, the rest of my situation would be a breeze! This is certainly NOT what I needed at this
time of my life!!!!!
Here’s a little incident that
happened the other night. I was SO HOT,
I went upstairs to change into a cooler shirt.
As I took the sweater off my head, my glasses came off, and out popped
the left lens, falling onto the floor.
ARGH! Guy was hollering for me to
come do something, and telling Mark I couldn’t seem to multitask anymore. ARGH!
It’s a thousand wonders I didn’t step on the lens that I couldn’t see
lying on the gray carpet! I got my
cooler shirt on, and as I was leaving the room, I thought I saw something shiny
catch my eye on the floor. Mark came up
the stairs to get my glasses to fix them.
The little screw had fallen out, too. He looked on the floor where I
thought I might have seen something, but didn’t find the screw. He said to never mind because he had a little
glasses tool kit and had plenty of screws.
In no time at all he had it fixed, and I was back into the business of
seeing. Thank the good Lord, he guided
my steps so I didn’t step on the lens and crush it, and thank the Lord for my
son having that tool kit!!
Now, back to washing my hair
on Monday morning. This was before I
closed all the vents. It got so hot in
the shower, I was not sure but what I might faint. When I finally got out of the shower, I sat
down and put my head down for a while to keep from fainting when one of the hot
flashes hit me, while the bathroom felt like a sauna. I thought I might roll
out on the floor! Then I had to get these dressing put back on. It really take two people to do this when I'm doing the dressing, but I couldn't get dressed until I got these back on. I got them, but it just added to my sweating. Then Guy came in and
said he wanted to take a shower. NOOOOOO!! Not now! Wait until I can get out of here and get this
place cooled off a little!!!! I
ordinarily dry my hair immediately after washing it, but there was no way I
could think about turning on that hair dryer!!
I finally got up enough to open the door and fan it back and forth, back
and forth. But the bedroom was too hot
to cool me off much. Later, after I could get out of the bathroom, and the
bedroom got opened up into the rest of the upstairs, we got it tolerable to
dress. By that time, my hair had pretty
much dried by itself, so I just used the straightening iron on it – between hot
flashes!!
Later that day we went to Scheel’s
(the big sporting goods store) for lunch – just to get out of the house after
the big snow we had, but after lunch, I pretty much just sat and watched the
ferris wheel while Guy looked around. I
just didn’t have the energy to walk around.
Tuesday morning, I woke up
feeling like a new person, after shutting all the vents Monday night. That was the night that I actually dreamed
some – the first time in a long time. I
felt so good, I wanted to go shopping.
The boys got out of school at 10:15, so we picked them up, went by the
bank, ate at this really good Mexican food place, and did some shopping. I wasn’t sure how Mexican food would set with
me since I have been eating just pretty ordinarily home-cooked food. But it was delicious and I got along
fine. We stopped at Walmart to pick up a
few things. Yesterday, I heard on the
news that later that day there was a shoot-out between police and a man in the
parking lot. The police had to kill the
man – there were no charges filed against the police because of
self-defense. Whew! That Walmart is in a nice part of town in
Olathe, too.
We finished our shopping at
Academy Sports, and that is where I snagged these boots on a clearance rack for
$19.99.
Genuine leather uppers and
fully fur-lined! Most all my shoes are
athletic shoes, and they make all of them with cloth sides and toes now. Those don’t get you through the winters here
in Kansas. So, I thought these would be
warm. I do have a pair of UGGS back in
LR, but they are not all that comfortable – they offer NO support – just feel
like big house shoes and are not weather proof like these boots are. It is funny – I got those UGGS years ago, and
I think I’ve worn them once while living in Alabama. Anyway, I felt pretty good about that
bargain, especially when Guy told me he had been looking at some like that
online for $154, but he just couldn’t pull the trigger on them for that
price. I looked on the bargain shelf for
something for him, but no luck.
I’ve been having some trouble
with my left hand that is wrapped like this in order to hold the dressing in
place on my arm.
For a couple days, sharp pain
would suddenly hit my thumb, or my palm, or the outer edge of my palm. It was just so annoying! It would happen just out of the blue. I do use the hand more and more now, so I don’t
know why it was doing that. I got out my
essential oils, and for a couple nights and mornings, I applied Young Living’s
Valor. Vola! (SP) That did the trick. I just love that stuff – any ache, anywhere
in the body – it works every time!! And
it helps with sleeping, too!
I have felt better and better
each day this week. As far as I can see,
that 1st chemo treatment caused no side effects. I’ve had no nausea, no elimination changes –
nothing really. That Dexamethasone that
I have to take the day before and the day after chemo make me a little dizzy
and spinning feeling, but just slightly.
Today I looked up the side effects of that med, and dizzy, spinning
feeling, mood changes (Guy said, “Oh, yes!”), and get this – INCREASED SWEATING!! Well, thank you very much – JUST WHAT I
NEEDED!!!!
Today I went for my 2nd
round of chemo. Before I took the
treatment, I met with Dr. Powers. I had
a whole list of questions to ask. He was
very patient and answered them all. He
looked at the spots on my head and felt like they had not progressed any. There are two spots around the flap that are
definitely angiosarcomas, but he felt like they were holding in size. The other two suspicious spots have not
changed to the black color, so they MAY just be spots related to the surgeries –
perhaps where the little instruments were holding tissue. He said he thought the hot flashes were
probably coincidental to all that was going on, and being off the hormones this
long had just now caused the menopause to kick in. He said he could allow me to start using the
hormones again, or we could just let nature take its course now and get through
it. BUT, he could give me medication to
help with this. I couldn’t see going
back on those hormones again, and then at some time in the future have
to go through this all over again – because you can’t take these for the rest
of your life anyway. So, I said if there
was medication that could help, I’ll take the medication. I can take it every 8 hours, but he suggested
taking one at bedtime for a while, and if I needed more, I could go to them
every 8 hours. I’m really anxious to
start on that tonight and see if I get some relief. If I didn’t have to deal with those miserable
times, I would be doing just fine! They
simply wear me down after a while!!!
While writing this, I’ve had to stop and fan at least 5 times!! ARGH!!!
If I were home, I’d strip naked – but then I never get ANYthing done but
dress and undress!
The chemo session went well
today. Before I left the house this
morning, I put the numbing cream on a square piece of Press N Seal and stuck it
over my port area. Before the chemo, the
nurse drew my lab work from the port. I
was a little nervous for the first time, but that worked like a charm! I had to wait for the lab results before she
started the chemo. She said the results
were good. I had noted on my lab results
that I get online, that I was slightly anemic from all the surgeries, but she
said my hemoglobin was 11.4 so that was just fine (normal lower level is 12). It was 11.8 last week. I guess I need to concentrate on getting more
protein in my diet. I haven’t been
concentrating on that like I was after the surgeries. At one point after that 2nd
surgery in the hospital, it went down to 6.8!
That’s when they gave me two units of blood. So, after the lab work was OK, she began the
premedication to the chemo. She cut the
Benadryl in half this time, and it just made me sleepy – NO RESTLESS LEG
SYMDROME like last week. Praise the Lord!!! The Benadryl is an antihistamine to prevent
any allergic reaction to the chemo. She
said they concentrate on this the 1st couple of times just to
prevent any possible reactions. After
the Benadryl, she gave Decadron – a steroid.
Then she had to wait 30 minutes before giving the chemo. The actual chemo takes about an hour. The 1st 2 times she has started it
rather slowly just to be sure I’m doing OK with it. Then she moves it up to the regular drip
speed. This time I had my new headphones
to listen to my phone. They worked
great. I listened to my book for a while,
but realized that I was dozing off to sleep and missing the story, so I
switched to Peaceful Holiday music from Pandora. Wow!
That was so pleasant and peaceful – mostly piano Christmas songs.
Jeannine had suggested that, and I’m so glad – it was great!
As soon as I finished the
chemo, we had to rush over to Dr. Mammen’s office to have the stitches out from
my 3rd surgery – the ones on top of my head. Dr. Mammen thought those had healed quite
nicely. He also looked at the angiosarcoma
spots on my head and felt that they were drying somewhat. His exam was quite encouraging to us. He felt that we were definitely on the right
track with this chemo. I’ll have another chest CT scan and see him in March just
to be sure nothing is spreading after four months of chemo.
After we left his office, we
were starving!! I did have an egg and
toast with peanut butter for breakfast rather than my usual cereal to try to
hold me over to a late lunch. We called
Mark and asked if he would like to go get a steak with us. Sure, he was up for that! Since the boys are with their mother, we
thought it would be nice to have a late lunch/early dinner with just the three
of us. We splurged and went to J
Alexanders. Yum! We were not disappointed! I had prime rib.
I was pretty amazed that,
with all I had been through for the day, that I was not exhausted – and still
no nausea! Herein in why I titled this
blog “Feeling so blessed today.” Plus, I
got home, and in the mailbox were more cards from family and dear friends. I tell you, I have been overwhelmed from all
the card and notes from so many dear friends.
And my sister – she has sent me a card for every single day I have been
in Kansas City!!! And three days ago,
the doorbell rang, and my SS class from Alabama sent me the most beautiful
Christmas bouquet!! I’m just too blessed by everyone. So many send such encouraging messages
online. So many online prayers! Sometimes I just have to pinch myself to see
if it’s real. Even with these pesky hot
flashes, I have been amazed at how I feel.
I know as the chemo progresses on, this will decline, but right now, I’m
just enjoying the energy and comfort that I’m experiencing right now. Yesterday, I developed a runny nose – I was
so concerned that I was getting a cold, that might affect my ability to take
the chemo today, but last night I took some Emerge-N-C and Zicam, and when I
woke up this morning, I realized that it was pretty much gone. Praise the Lord for that, because the chemo
attacks the immune system, and you have to be ever so careful to not get an
infection. The Lord has just been so
good to protect me during this time.
Oh, yes! While I was at Dr. Powers office, we
discussed my going home and transferring the infusions to Hutchinson. The nurse said she was working on that. In
order for that to happen, I would have to get established with a Hutch
oncologist for day-to-day or week-week issues.
I would still have Dr. Powers as my main oncologist (I don’t want to
lose him!), and he would be conferring with the Hutch doctor to make sure all
goes as planned. I told the nurse I had
a nurse friend who had worked in the Hutch Clinic, and I would contact her to
get her recommendation for an oncologist there.
She said all she needed was a name and she would take care of the rest. During
the chemo infusion, I texted my friend, and she called me back, giving me her
recommendation. I told Stacy, the nurse
here, and she went right to work on it.
Just after I left the office, she called to tell me she had it all set
up! I got the doctor I wanted! I take my last dose here on Dec. 29th. Then I have the next week off. Mark will be home from Canada on the 7th. We will go home right after that, and my
appointment with Dr. Shannon Haenel in Hutch will be on the 12th
right before my infusion there on the 12th. Stacy had already sent my file information to
Dr. Haenel, so she will have it ahead of my appointment. I am REALLY going to miss this KU bunch
here. I’ve never in all my years of
nursing run into medical people so caring and compassionate, and so eager to
meet all your needs and make you feel at ease.
I sure hope my experience in Hutch goes as well. I’d love to take this bunch with me to
Hutch. I believe that the whole philosophy
of the KUMC is striving to be like this, because I have not had anyone in all
my surgeries or treatments that has not gone out of their way to make me feel
comfortable and all my needs met. Well,
I take that back – there was one preop nurse that had a hard time starting my
IV, and didn’t seem very nice. And there
was that one food service guy that just plopped my tray on my table, and never
opened one thing when I was “one armed” in the hospital. But I’ve forgotten those two, because all the
other have far overshadowed them! Either
they have really got it together here at KUMC or the Lord just gave me all the
caring and compassionate ones that work here!
I’ve notice particularly in the cancer centers I’ve been in, that people
REALLY do go out of their way to be nice and make you feel welcomed. The last thing you need when you have cancer,
and are all stressed out over living or dying, is someone that doesn’t give a
rip about you! I still remember that first
day I entered that cancer waiting room and was standing in line to check
in. I wanted to turn and RUN out the
door!! I kept saying to myself as I
looked around at all the bald heads, and people pushing their pumps, “Oh,
Lord! I don’t belong here! I don’t belong here!” But the lady that checked me in was SO
friendly and kind to me, I just couldn’t believe it! And it’s been that way every time I have to
go.
So, I guess, this far into my
ordeal, I’m just thanking the Lord for taking care of me as He has – placing the
people in my life that I so desperately needed at that time, and they were so
NICE to me, giving me so many WONDERFUL, CARING friends and family all across
this nation to pray for me and encourage me – sometime just out of the blue
during the day – online, with calls, with cards, with some of the nicest
gifts! Just today, I got two beautiful crocheted
hats from Joie Sassnet, one of my dear quilting friends from Alabama. Thank you, Joie!!!! That was just SO thoughtful!! I’m just overwhelmed. I can never begin to repay all the love. Just know that I’m soooooo grateful for
everything – big and small. I just love
all of you. There will be soooo many
stars in soooo many crowns one day!! God
bless all of you!!!
As always…. I’m in His hands……
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