Peritoneal Cancer Journey Phase XIXIII
It is December 22nd and I am about 2 to 3 months
behind in my blog… It has been a
challenging few months to say the least.
This morning I am sitting on my couch watching light snowfall thinking
what to do with the blog, and then it hits me to get caught up… Laughing… Yes, entry 23 will cover from September to now… Lots went on and I am happy to say I
really feel I am getting to the other side of all of it… I think… <Smile>…
My doctor visit on October 3rd was good; I had 2 CA draws during
this time. My CA-125 is at 2757
down from 3222 and 3300 from my last doctor visit so I am encouraged, I will
take any kind of decrease in my CA #’s, no matter what as long as it is
down... Smiling… It has been 5 weeks since my last doctor
visit, which my doctor does not like.
He wants to see me every 3 weeks.
I said not a problem as I am here every week anyway, smiling… I am tolerating treatments well, not
overly tired… I nap a bit on
Wednesday when I receive Chemo, work part of the day. Nap when I get home from work on Thursday before dinner, and
it seems by Friday I am a bit more like my self. Then I have the weekend to relax and I am ready for the next
week, so not too bad. Much easier
than the 3 drug combo I was on…
Much…
So I got in to see the Ear, Nose, and Throat Doctors
Physician Assistant. She said both
sides of my nose are very dry and the capillaries are very close to the surface
of my nose, which is the cause of my bleedings. She packed my left nostril with a Vaseline gauze in an
attempt to get some moisture up there and put pressure on the capillaries so
they don’t bleed and attempt to get them to calm down and heal. Made a follow up appointment for Monday
to remove the packing
Tonight is the 1st Presidential debate that Megs
and I will be watching. This is
Megs 1st Presidential election so I said I generally watch the
debates to get a overview of the candidates stand on things and research from
there what I have questions on.
The debate was quite an adventure for me… The packing in my nose kept making me sneeze… One of the sneezes loosened the packing
and part of it dangled in the back of my throat. I called the Doctor and waited for a call back. At one point I had to remove the
packing myself as I was choking, not a fun thing… When the Physician Assistant called she said to come in
tomorrow and have my nose checked.
There was no bleeding and the packing came out easily…
1st thing Thursday morning I am seeing the doctor
for my nose. She looks inside said,
you have not had a nosebleeds since being packed? I said, that is correct, no nosebleeds since being packed,
she said I am very surprised, she removed a clot and the adventure began:
cauterized 7 spots on the left and 4 spots on the right. She had me so numb I couldn’t feel my
mouth or throat… At one point she
asked how I was doing, I told her I couldn’t feel my mouth or throat… She said that will go away in about an
hour… Oh My… <smile> Each time she cauterized a spot on the left it would bleed
somewhere else. She then packed my
left nostril with a sponge so not to repeat the gauze incident last night and
to stop the bleeding by putting pressure on the capillaries that are a real
problem for me. She kept my right
side open so I might be able to breath a bit and wrote out instructions on what
I need to do. I am on an
antibiotic for the next 5 days to prevent any infection and will go back on
Monday to remove the packing and see what is going on. I stopped at the drug store to pick up
my nose supplies to begin my regimen.
I have to keep the sponge very wet and my right side moisturized. Neither can dry out… And sneezing wow… comes from my toes.. Oh yeah I had to
learn to sneeze out my mouth, not my nose… That is weird… Now I am a pro, probably will not sneeze
through my nose again…
<laughing>…
On Monday they removed the packing and my nose looks
better. We had scheduled a trip on
October 19th to Falling Water to tour a Frank Lloyd Wright
home. It is one that I have not
seen in person before. I was not
able to go with getting the packing just out of my nose. I had to lay low and take it easy to
allow my nose to continue to heal…
Lynn went without me. If I
didn’t get any more nose issues the ENT Dr said I could go on our Los Vegas
trip we have planned on 10/24.
With such short notice not being able to do the Falling Water trip we
were not able to find anyone to go.
Bummer…
The Vegas trip was one we promised my mom we would do for
like the past few years. We
stumbled upon a really good deal, actually jumping in on a co-workers
trip… <laughing> She arranged everything through
AAA. When she said what they were
doing and the cost it was an easy decision. I called AAA and said I would like to book 6 tickets just
like what Sarah has… Easiest trip
I have every booked…
The good news is no nose issues all week so I was able to go
to Los Vegas. We have a great
time. Saw Elton John in Concert,
had great food (which is not so cheap in Vegas anymore…), lots of laughs and
fun. I did find I like the poker
machine “let it ride”. We found
one our last day and I sat down with mom and played for a bit. It was really fun and I was quite
surprised spending $5 to $15 per hand… Those that know me yeah I shutter at playing
a $1.00 on the slot machines…
<laughing>, It didn’t feel like real money to me so maybe that is
why, not sure… Won a little too so
added bonus…
When I return from Vegas I have another appointment with my
Oncologist and my CA-125 is down again! It is now 2604. I am really happy with my numbers going
down… I am not having nose
problems right now so my doctor thinks I am on the other side of that now too,
we like the sound of that very much…
With getting the weekly Taxotere my hair is thinning regularly and I had
Laura my hairdresser cut it really short to help with the weird feeling you get
on your scalp. We are trying to
see how long it takes for me to lose my hair with the new Redken shampoo we are
using. I am going to have a break
with chemo the week before Thanksgiving as I have been getting weekly
treatments since August so I am very excited about that… I will not have another treatment until
November 21st, looking forward to that weeks break.
On the 20th I call to talk with the Nurses as I
feel horrible still and want to see if I can delay chemo a little to feel a bit
better… I speak with them and it
is decided that I will have chemo on Monday the 26th. That works for me, gives me the weekend
to try and get on the other side of whatever I have or is going on. I have lost my sense of taste at this
point too… Eating is becoming
difficult again so I am taking Orgain to help. I don’t want to lose weight to compound everything else.
We are having Thanksgiving dinner this year at our
house. I am really excited about
it. However a week before my nosebleed
start up again. I go see the ENT
Dr and not only do I have to have more cauterization, but I have a sinus
infection, which the Dr consults with my oncologist if it should be cultured or
just go ahead and treat. They opt
to treat. So my nose is repacked,
I am on a really strong antibiotic and I go back the Wednesday before
Thanksgiving to have the packing removed and my nose checked out. I am miserable, I feel horrible, can’t
breath through my nose with it being packed, can’t blow my nose… I’m not sleeping at night, not eating
and overall not feeling well… And
we have having Thanksgiving dinner and I can’t do anything… Then there is our daughter, SUPER
Megs… She jumps right in, goes
grocery shopping for thanksgiving dinner… Does whatever we need her to do to help us feel somewhat
ready for Thanksgiving. Everyone
in my family made something for dinner so it really helped. The day before Thanksgiving the packing
is removed from my nose and I am instructed to do nothing or my nose will start
to bleed… So nothing I did, no
lifting, bending, moving, nothing…
Lynn’s sister Christine was over on Thanksgiving and helped Lynn set the
table and get everything else ready…
I napped in the early afternoon and when I came back downstairs our home
was ready… It was magical…
We had a wonderful dinner and evening with Family… The turkey took an extra 45 minutes to cook;
I think I read the wrong time… I
think I calculated time for an unstuffed Turkey, anyway everything worked out
fine and dinner was wonderful. I could
taste some things, not everything which was disappointment, but able to taste
some things so all wasn’t lost <smile>…
On Monday November 26th my sister Barb and I
arrive at the infusion clinic for my chemo. I am having difficulty breathing, still not feeling
well… Just completely out of sorts
is the best I can describe. Jackie
sends me for a chest x-ray because of my breathing. The radiology is really busy and everything is taking a long
time. When my chest x-ray results
are in my Oncologists says I need to come back tomorrow and see him. So Barb and I pack up and go home to
come back tomorrow… Barb and I
laugh as Lynn will not let Barb take me any more as each time she does
something happens… Weird huh…
Because I am now seeing the Doctor, Lynn comes with me. We meet with the doctor who reads the
chest x-ray and does and exam. He
diagnoses me with Pneumonia… okay
that is quite a surprise to me that was not what I was thinking that was what I
had… Really had no idea what was
going on with me… I am going on a
really strong antibiotic again but better for the lung… This is like the 4th time I
am on an antibiotic in 2 months…
We proceed with chemo… Lynn
mentioned on the way home she is a littler relieved that that is what is wrong
with me, I laughed as I was thinking the exact same thing… At least we know what is wrong and it
is being treated now… In a few
days I start to feel a little better…
Oh how I hope I am getting on the other side of this adventure, I really
hope something goes right, I could use some good news…
By the time I finish this antibiotic I can’t taste anything
and am starting to have issues with textures. For the first time I am struggling not to lose weight. This is weird for me as I have not had
to deal with this before so I search to see what I can do to help my
taste… 2 of the antibiotics I have
been on recently are known to effect taste and can effect taste for a while
after stopping. All righty then, I
am not wanting to know that… Anyway some of the suggestions to get through it
is to talk with your doctor about switching antibiotics to something else. Well I have finished them so that won’t
work. The other suggestion was to
keep with simple foods. Avoid layering them with spices or other
ingredients. So I will try that,
and you know that worked the best.
I made meatloaf, potatoes and a veggie and I could eat it, then I tried
a simple stew and it tasted good…
It didn’t bother me, as much and I could almost taste it. So I will cook or get foods that are
simple with not a lot added to it.
The more complex the less I can eat it right now and as soon as this
texture thing kicks in I can’t finish…
It is a real pain in the behind…
This too shall pass.
I am going weekly for chemo again and it is going good. I am not 100% yet, but hope I am
getting there. I’ve had my head
buzzed as the top of my head hurt and once my hair is buzzed that feeling goes
right away… So over the past few
weeks I’ve been demonstrating my head-wrap techniques that my sister taught me
during chemo… <Laughing> A
number of patients have commented at the infusion clinic how willing I am to
take my scarf off and show everyone how to wrap… Barb did take me to more chemo after the pneumonia
episode. We stopped at a wig place
on the way home. I was thinking
this go around I might want to wear a wig from time to time for something
different. We have fun trying
different styles and colors. We
were both quite surprised that deep brown looked the best on me. Barb and I are twins now…
<laughing>… Will have to
take a picture of my new due and wrap to show my different looks…
On December 11th I see the ENT Doctor again as I
got 2 nose bleeds in like 5 minutes…
She looks in my nose, and yes cauterizes both sides, packs the left side
and I am on an antibiotic again… The
weather really needs to stop doing the 40-degree swing thing or my nose will
never heal… I am putting so much
up my nose trying to keep it moist between saline nasal spray and saline nasal
gel. I don’t know what else I can
do… Yes, they make a saline nasal
gel… Works really well. The ENT Doctor said it is better; it is
just going to be challenging winter that we may need to just work together to
get through it. I guess the good
thing is this all happens after this weeks chemo so I don’t have to go there
with my nose packed, sigh… I am
having real difficulty eating again with taste and textures… When I get on the scale at the doctors office I find I’ve
lost 6 pounds. Yes, I am not happy
about that right now… I need to
eat or I will not get over this crap I am dealing with. Yes, I am very cranky right now and my
sense of humor is thinning…
<wink> Plus through all this I am stuck at home
trying to get myself better, no Christmas shopping, no holiday parties, no
visiting, no wine <chuckling>… Just being at home or going to doctors’ offices. Huh, I think I am suffering from cabin
fever <wink>.
So the 18th I see my ENT Doctor and she removes
the packing, checks my nose and is pleased with what she sees. Says there is lots of healthy
tissue. Yea!!! There are 3 really tiny spots on the
left that she cauterizes and says words to my ears, “does not need to be packed”. <laughing>. Says looks good so keep up the
moisturizing regimen. I will
experience some oozing, that it’s to be expected. I am to call and go in if I get multiple nosebleeds. I maybe getting to a good place with my
nose, dare I hope…. <smile> I am a bit optimistic…
Next is My Oncologist Doctors appointment on December 19th. He reviews my blood work, my hemoglobin
in 7.8 (low) which is contributing to my difficulty breathing, my platelets
171,000 (that’s good), my white is 1.6 (1600, low) okay will have to continue
to be home. Then he rattles off a number 1066… I stop, not sure I heard right, so I ask, is this my
platelet count, he says no, I say my white, he says no…. I say my CA-125!!! He smiles and says yes… Oh my God! That is almost a 50% drop, from 2034 to 1066… No way… Lynn and I look at each other is amazement, and excitement… It has not been that low in like 2
years!!! Makes the last 2 months
almost tolerable!!! Well, not
quite… <laughing> We talk
about my breathing as I do loose my breath when I go upstairs and such. That could be tied to my low
hemoglobin, or getting over pneumonia, or a rare side effect to the taxin
drug… Not sure exactly what the
culprit is here. We also don’t
want to transfuse, we are hoping my body will generate blood by itself with
rest. So on Sunday I will run to a
local hospital for blood work to see where I am level wise and what do we need
to do to help me. So I am
homebound again with low white counts and hemoglobin… With a CA-125 like that it certainly makes it more
tolerable… Merry Christmas to
US!!! Woo Hoo!!!
