Deja deja deja vu

Ok I originally wrote this for 24 hours ago, but wasn’t feeling well, so I just saved it.

Last night we got our first snow of the season.

I don’t know why I find it exciting, but I do.  The temperature this morning is still cold.  I wished I could get out and take some pictures.  Unfortunately, my white cells have tanked, so I think rather than flirting with getting sick, I should stay indoors.  Hopefully it will not mess our weekend plans up.

 

So….. Here I am.  At the end of the first week for my second chemo session.  Is session the right word?  Wednesday I got extremely yuk feeling.  I wasn’t sick or nauseous.  Just really tired.  Oh!  I had the weirdest headache.  Have you ever had a headache that felt like it was inside your head?  I know that probably sounds dumb.  But I felt like it was in the middle if my skull. I also have been fighting mouth sores.  I have been using the Muguard.

The problem with this chemo is it is saturated in your bodily fluids.  I’ve been having temperature issues.  One minute I’m extremely hot, the next extremely cold.  When I hot flash, I start sweating.  Well that chemo is in my sweat.  I unfortunately got to sweating off and on the otehr night.  I had worn a sports bra to bed and when I took it off, I have sores under my boobs.  looks like my skin is peeling away :(.  Hence, why I also am getting mouth sores.  It is in your saliva.  I try my best to keep my mouth washed out and constantly drink water….

 

I’ve been trying to think of a way to snap Dan and I out of feeling like we are in survival mode.  There is a lot of little things that are starting to weigh both of us down.  Some days it feels like we are drowning.  Other days you can hold your head above the water long enough to just survive.  I don’t want to live like this.  In fact, this is not living.  I feel powerless to change anything.

I know I have complete control over my attitude and that influences those around me.  I have worked on my positive outlook.  Trying to get everyone to look at each day in a positive light.  Even that is a chore.  Especially when you know you are about to spend two weeks feeling like ick, then spend three more making up for feeling like ick.

In just a few months this will be over with and we can move on…… that is what i keep reminding myself.

 

In the meantime…. have you ever felt snow on a bald head?…  lol.

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Having a FML Moment

Ever had one of those moments?

Ok we all do…

Yesterday was a crazy Tuesday.

I woke up at 8:00 thinking I completly missed Bee’s field trip.  I jumped out of bed and realized I hadn’t, but if I was going to get going I needed to do so now.  I quickly got dressed and ran out the door to fill the blazer up with gas and to grab a sack lunch.  I got to the school and parked…waiting fopr buses to show up.  In the mean time I got to have a good conversation with a close friend.

Two buses showed up and away we went.  This was going to be a great day….  Till we ended up at the Wishing Farm.  Now we did pass the exit and my gut instinct was that something was not right.  I was so certain that Bee said Cliff Dwellings.  As I watched really small people get off the bus I called the school.  Sure enough… It was kindergartners.

I was so angry.  As I was driving to get to the cave of the winds I paused in my brain to just say “Lord……yeah.”

I’m not a traditional prayer. I don’t oh Holy God blah blah.  I believe that you can talk to God just as he was sitting next to you.

At that moment I just started to laugh out loud.

I’m still laughing.

Yes, I made it up to the Cliff Dwellings.  I paid $9.25 to see a 15 minute movie.  Use the lady’s room.  Run through the gift shop in record timing. Back in the trail blazer to go to Bear Creek Park.

Ok, I was not the only one that got caught by the two buses, but the other mom turned around.

Silver lining: We were going to take the kids to the Wishing Farm to get pumpkins.  After seeing it I realized that it is gear towards young, a lot younger, kids.  Saves me money and disappointment.

_________

So how am I doing?  It was really nerve racking as the days led up to Monday.  I guess I am afraid to make the wrong decision concerning these treatments.  Yes, I believe you should follow your heart.  But, what if I was letting personal and metal fatigue make the decision?

No one said these cancer treatments would be a cake walk.

Another part of me just does not want to get into a confrontation with doctors over how I feel.  Thankfully, my oncologist here has agreed with how I feel.  He said, “why would we fix your leg and then put you in a wheel chair?” He never got a hold of Dr. Henshaw.  She is out of town.  But, he feels that continuing the IX chemo would further cause more nerve damage.  SO, no more IX chemo.  We are going to continue the MX chemo for two weeks at a time.  I start this coming Monday.

I should not let these things work me up.  I know this.  It is mentally straining.  I hold my breath in anticipation.  It is like waiting for that call to see if you got a job or not.  I guess I am waiting to see if I need to stand up and counter their argument or not.

One thing I’m going to have to be VERY careful of is temperature   Because I have very little sensation of temperature in my fingers and toes, I could easily burn them or freeze them.  Crazy, eh?

So I am going to enjoy the rest of my week of freedom and build up courage and strength to get through the next two weeks.  The only bad side effect of the MX chemo is fatigue.  Just have to beat that fatigue.

I can See clearly….

Well….  My appointment with they eye doctor went super awesome.  I still have awesome vision and no cataracts! I could have a slight prescription but it is not worth getting glasses for.  I do not know how I am blessed with good eye sight.  Everyone else in my family has to wear glasses.  On the down side of this… just means my funky vision is part of the neurological side effects.

 

SO I posed a question to facebook: quantity or quality.

I was curious of what people thought.  Ok.  It sort of back fired on me.  I think most people assumed I was giving up and going to go die in a hole some where.  That is not the case. Dan and I have decided we are not going to continue my current treatment plan.  The side effects are not worth ensuring I do not have any micro-cells left in my body.  There has to be some sort of alternate treatment.  Iam thrilled that the oncologist here in the Springs is thinking the same thing.  Now all we have to do is wait till monday and see what him and Dr. H have come up with.

Well, most of my morning chores are done.  I think I might try to pursue my photography challenge of the week.  Just feels good to report something good for once.

Good Visit! Changes ?

So the entire weekend Dan and I were figuring out how to approach the doctor about the the CIPN.  For those that do not know what that it it is: chemotherapy-induced peripheral neuropathy.  Basicallyit is, “…a set of symptoms caused by damage to the nerves that are further away from the brain and spinal cord. These distant nerves are called peripheral nerves. They carry sensations (feeling) to the brain and control the movement of our arms and legs.” (ACS)

CIPN is permanent over time.  By now, seeing as I’ve only had one round of this new chemo series, the effects should be fading….but they are not.  So my oncologist is going to talk to Dr H in Denver about possibly a different treatment, eliminating the IX chemo, or changing the dose.  I’m thankful he took me serious.  Now, the issue with my eyes.  (laughing) This could possibly be cataracts which, yes is caused by chemo.  Now cataracts runs like wild fire in our family.  So it’s no surprise.    Tomorrow I see an ophthalmologist and find out whats going on.

Leaving the cancer center I couldn’t help bu laugh.  Who would have thought at 31 I’d have a 9 inch fake portion of my femur, a knee replacement, menopause and possible cataract surgery?  You have to admit it’s funny to think about.  Most people having these things done are almost twice my age.  I guess when I hit that age I’m going to really be living the golden years.

 

Still – it left Dan and I questioning if this treatment was worth the long-term effects.  It was really a matter of deciding what sort of quality of life a person wants to live. We both agreed that this is not something we are willing to continue if the effects are going to intensify and get worse.  We are pleased to hear the oncologist agrees.

 

I got a new photography challenge and I think tomorrow morning I’m going to get out and see what I can do.  I just hope I can muster enough strength in my hands to hold my camera. :S

Image

October 5th

Isn’t she beautiful?

October 5th would have been her 54th birthday.

I honestly feel like a jerk.  I din’t realize it was my mom’s birthday until we were headed to Denver.  I opened Facebook on my phone and saw a picture of my mom.

I wasn’t sure how to feel.

Can I be honest?

I’m at peace with my mom.  I struggled for four years to find that peace.  Through counseling, I dealt with a lot of emotions about my mom.

But more than that…. you’re going to think I’m crazy…. especially if you really know who I am.

Two things have happen that I can not explain.  My gut instinct is they were hallucinations…from pain medications.

But they have brought me the greatest strength and encouragement.

The first event happen the first time I ended up in the ER .  I was sicker than a dog.  My throat and belly was lined with  sores from the chemo.  They were leaking acid into my belly.  Which caused my belly to create a bunch of bile…. hence what ever came down was going back up.  The pain from dry heaving was insane.  So I got some extra pain medications.  The last they gave me was dilaudid.  I was finally not throwing up or in pain.  I fell asleep for a few moments…  I remember telling myself I could not make it through this.  There was no way I could do this.

I closed my eyes and I was somewhere else.  No where but some where.  I heard a familiar voice call my name…. but it was not just my normal Kim.  It was Kimmy.  No one calls me that…except one person.  When I looked up I saw her.  I know she was my mom.  She sounded like my mom, except she did look like the mom I remembered.

The last time I saw my mom she was barely 50 pounds.  Skin and Bones.  The last thing I remember her saying were cries for her mommy.

She was beautiful.  Beyond words or expression.  She had long red brownish colored hair.  Her face was full and her brown eyes were captivating.

I remember crying and telling her mommy I can’t do this.

She just smiled and said You are my girl and because of this you have all the strength and courage.

I heard myself say out loud I can do this and I opened my eyes.  I was sitting up.  Next thing I knew I was throwing up because I was really dizzy.

The second event…..

Happen when I was knocked out for my major surgery.  I was in this beautiful place taking pictures of humming birds.  The light was perfect!  There were so many of them.  I heard that familiar Kimmy.  When I turned around she was sitting on a huge fallen log….smiling.  I went and sat next to her.  I asked her if she was there to take me home.  She shook her head no.  We sat there for a long time.  I laid my head in her lap and I remember just feeling at peace.  Then she said my name again.  When I sat up she took my hand.  In her had was a humming bird.  She placed it in my hand.  I can still feel myself smiling.  When I went to look at her she was gone.  The humming bird took off and flew up towards the sun.

I woke up.

I’m sure they are delusions…. hallucinations my brain has conjured.  I have thought maybe it was God.  Maybe God sent me an angel? Either way…they have brought me an even greater peace.  I’m not going to die of this cancer.  This cancer is not going to spread.  I don’t know why I have cancer nor do I understand why she had to die of cancer.  I just know that I am her girl and because of the incredible woman she was, I am today just as incredible.  She taught me the real meaning of strength and courage.

I miss her, but I know some day I will get to see her again. I don’t have to be sad or miss her, just have to be patient.

A week of Freedom….or Not.

Well I’m at the end of my first week of being chemo free and I feel a bit normal.  Still have numbness in my hands and feet.  Yesterday I had to go to Denver to see Dr. Kelly.  She thought I should have had better bend in my knee than I had but she was happy with my progress.  I got new xrays taken.  Crazy to see all that metal in my leg.  You just stare at it in awe…it’s crazy!!  No stress fractures anywhere.  So good news!  While we were there I went across the street to get a complete copy of my medical records from PSL.  Time to get stuff together for the lawyer.  I realized how bad the neuropathy in my hands is getting when I tried to fill the paper work out.  I could hardly hold the pen and write.

Monday morning at 2:00 in the Tuesday I learned just how bad chemo induced neuropathy can escalate.  Around 10:00 pm I called my best friend and asked her about back spasms.  My lower back felt like it was spasming.  She gave me some things to try.  At midnight I gave up and took a Valium.  About 45 minutes later I took another one.  My surgeon game them to me for muscle spasms.  My thought it surely this would work.  Another hour went by and it just kept getting worse so I figured screw it, I’ll try two flexerils.  Nothing.  At this point I was literally in tears.  I could not sit. I could not lay down.  When a “spasm” would hit I couldn’t help but almost scream out in pain.  So Dan took me to the ER.  That was the longest ride in both our lives.  The pain of sitting there was beyond words.

When I got to the ER (at the time it was not amusing) I set the security alarm off.  I did not have anything in my pockets.  It was the metal in my leg. I was quickly put in the back.  I could not sit down so they had to give me an IV and do all my vitals with me standing up.  Thankfully my old ER doctor Ellias was there.  He was not my assigned but he signed the orders to give me morphine.  Did nothing for the pain.  So they tried one more dose.  Still nothing.  Finally they gave me dilaudid.  FINALLY some relief.  They ran blood tests and a pee test.  By this time it was 6:00 in the morning.  Dan had to get home and get kids to school.  I finally saw a doc.  Blood work was great.  Kidneys were good.  Pee test came back negative. So he ordered an MRI of my pelvis and spine.  He was thinking maybe the cancer had spread.  I was so doped up I didn’t realize was he was thinking.  I also had a chest CT done.  Because I have a reaction to contrast I was shot up with steroids and benadryl. Yes, I was not feeling pain.  Although, I did have to get more pain killer before the CT.  Took a long time before I saw the doctor.  Everything came back negative.

So what they heck was wrong with me? Chemotherapy-induced Peripheral Neuropathy.  Wonderful, eh? I have done some online research.  Pretty much it is speculation as to what causes it and cures range from acupuncture to no cures at all.  FOr now, I’m taking dilaudid at night so I can sleep. and when I start getting the pain during the day I take half a dose of percocet.  With all of it I have to take zophram so I do not throw it up.  The pain is primarily in my back but also my hips and my arms and hands.  I see the oncologist monday morning.  There is a lot to talk about with him. I am also having extreme sensitivity to cold.

 

The rest of my week was spectacular!!  Been able to do somethings I love…. COOOOOKING! I still battled the fatigue through friday, but today has been a fairly normal feeling day (knock on wood.)