The very sad, very tense funeral for my dear cousin Marie

 My cousin Marie had passed from NON SMALL CELL LUNG CANCER.  She was my oldest female cousin, and I loved her dearly.

Yesterday, we were to celebrate her life with her funeral. Marie planned out her funeral, picked out her casket, and had arranged plans when she was diagnosed, about six years ago. At that time, she told me she would be lucky to get 2 years of life--well she crushed that goal!  Marie was a nurse (and worked oncology for a long time).  When I was sick with APL, Marie had talked to me on the phone and even sent in her best friend, Robin, to come check on me (Robin was also a nurse who worked in the same hospital I was being treated).  Marie was someone the family thought was a bit snobby at times, when really, she wasn't snobby at all.  She was caring, concerned, and she had goals and acted on her wishes and dreams.  That was something most of our family didn't have...goals that they thought they could work towards or dreams.  I was a bit like Marie in that I was also the oldest of my siblings, and if I want to do something, I go and do it.  Guess what-- it was a somber, sad, and tense funeral and I felt ridiculously uncomfortable.

Waiting for a loved one to pass

Its 11 am on a rainy, stormy, lightening filled Sunday.

My cousin, Marie, has been fighting lung cancer and now brain cancer for a few years.  She came home from the hospital on Friday night...in a hospice situation.  Her body is shutting down and she is worn.

I thought it would happen yesterday.  I read a slew of texts Saturday morning saying Marie was dying, pray for her.  It was not the news I wanted to read as I began my day of showing houses.

I cried and was very upset.  I was sad.  I still am sad.  I called Marie's cell phone and heard her voice say, "This is Marie. Leave a message."  I said I love you after that beep.  She might never hear it.

I called her sister, my other cousin.  I asked a lot of questions and tried to be brief, I can't even imagine what she is going through.

I waited.

As much as I want to see her, I feel like she is too far away and there is too much of her immediate family there, plus sounds like disagreements on how to handle this.  Marie knew she was terminal since day one.  she was a nurse, and an oncology nurse, too.  She pre-arranged her funeral.  Now its time for her family to respect her wishes, that is one of my concerns.

Again, its Sunday.  I'm waiting for my cousin to die.  I cried so much yesterday, I felt such a strong sorrow yesterday.  Today, I want her suffering over.  I want her to pass peacefully and I don't want her to be a morphine filled body for a week or two, while her kidneys are shutting down and she is yellow with black purple and blue marks all over her body.  That is not my cousin Marie.

Marie was always the styled older cousin that was super smart, driven, fashionable...someone to be mad at yet look up to.  She bossed us like a mother, she was a babysitter to us.  She was the epitome of popularity in my mind, style, and smarts.  So pretty and well spoken.  The complete opposite of me.  I loved her and hated her for it.  But, I always loved her.

I'm scared to die.  No secret there. I don't like waiting for someone to pass away,either.  I want to try to fight for her, but there is no fighting for life now.  Besides, this is what she wanted.

Her daughter, her mom and dad, and her brother and sister have to deal with so much more right now.  I am somber and anxious and hoping the call comes soon.  Once she passes, everyone can begin to heal.  They can be happy for the good times with her, and they can be thankful for all the time she had, which was so much more than what they initially thought.  She is a fighter.  The feelings right now suck, though.  The nervous weirdness in my mind and body suck.  I don't want her to suffer, but I don't want her to die or to be gone.

I pray for her and I pray for us.

 

My First Colonoscopy

I've been having some problems with my bowel movements.  So, I went to see a doctor, who told me I wasn't drinking enough water (which is false...I am drinking plenty of fluids).  She also referred me to a Gastroenterologist.  

After seeing the specialist,  he recommended a colonoscopy.  I'm under 45 years of age, but I have a family history of colon cancer, my cancer history of APL, my gallbladder removed, and a diagnosis of colitis when I was 18.  If you haven't had a colonoscopy yet, you have nothing to be afraid of.  Let me tell you all about my experience (the following may be graphic):

My doctor gave me a kit for what they call the "prep".  Your prep really begins about 7 days before your colonoscopy.  I was told no green tea, no vitamins, no ibuprofen 7 days before my test.  My test was on a Tuesday, so the day before I started my  "prep" kit.  On Monday (the day before), I was only allowed to consume a clear liquid diet. This meant water, clear, strained broth, 7-up, Sprite, or ginger ale, tea (not green tea) and apple or white grape juice.  There were a few other things I could have, but I had to make sure they didn't have pulp, were certain colors, or had food colorings in them.  Orange juice was not allowed, no orange gatorade, but blue jello was okay.  This seemed to complicated for me, so I stuck to ginger ale, canned chicken broth, and water on Monday.  No solid foods whatsoever.

*Note: Your experience and your doctor's instructions could vary.  This is just my experience, and I am not a licensed doctor nor am I giving any medical advice.  This is just my personal thoughts on my own experience.  Please ask your doctor and do not interpret this post as guidance or medical advice.

At 6 pm, I was to start the kit my doctor's office gave me.  It had a container that looked like a mason jar and held 16 fl oz.  There was also a box that had 3 pouches of powder in it.  At 6pm, I took one pouch of powder and mixed it with water to the fill line of the mason jar and had to drink it fully in 30 min.  It was the worst tasting liquid I have ever tasted.  It was similar to the taste I get in my mouth when someone flushed my port during chemo treatment.  Salty, sour, bitter but no flavor.  It was incredibly hard for me to drink this liquid.  After it was done, I had to drink another 16 oz of water.  

After about 1.5 hours, the fun began.  I had the urge to go potty about every 20 min for a few hours.  Its not painful, but its urgent.  After awhile, its just liquid and almost water.  As time went on, the spacing between bathroom trips began to increase, and I could fall asleep for a bit at a time.

Six hours before my test, I had to do it again.  I took the two remaining packets in my kit, mixed them with water to the 16 oz line of the mason jar and drank it all in 30 min.  This time, it tasted better, but it still was awful.  I got it down easier.  Again, I had to repeat and drink another 16 oz of water right after.  

30 min later: I had a bad feeling in my tummy.  I knew there was nothing in it except the medicine I just drank.  Before I could make it to the toilet, the vomit came out with such velocity.  I was cleaning up basically liquid (as I said before, there was nothing left in me at that point) for the next hour.  We lost an area rug, too...it soaked right in and there was 32 oz of yellow watery fluid that rushed out of me.  I drank a bit more ginger ale and had to stop drinking any fluids completely 4 hours before my test.  

When it came time for my test, we arrived at the hospital.  It was smooth sailing from there.  I put on my gown in my room, put my stuff away, and BD was able to stay in the room with my stuff.  They hooked me up to an IV and took my vitals, and off I went.  The nurse was asking me about my Thanksgiving day plans and then she said she was going to start giving me my twilight anesthesia.  I felt a warm sensation from the IV and suddenly I was out.  I woke up and I was in my room again, and BD said I was gone for about 20 minutes.  That is super quick!!!

I was not allowed to drive myself to the test.  I had to have someone there waiting with me to drive me home.  Also, I was not allowed to make legal decisions, work or drive that day, so it was an automatic day off for me.  I was allowed to eat as soon as I felt I was ready.  I did eat a small sandwich when we got home, but then I slept the rest of the day.  I was not allowed to take Ibuprofen for 3 days after the test, because they took some tissue samples to biopsy.

The actual test was fine.  Nothing spectacular to report.  It was quick, painless, and easy.  The prep day (the day before) was not fun, and puking was the worst, but I felt fine as soon as it came out of me.  I was told to repeat in 5 years, which is good.  I'm hoping the "prep" kit 5 years from now does not taste as bad as it did.  I'm also told there are other kits out there, and they are all very different.  They do have the same goal, though: to empty your system so the doctor can see everything clearly.  

If you have a story about your colonoscopy, feel free to share it here.  The nurses told me not everyone throws up, but it does happen.  They said as long as what leaves you is liquid and clear or yellowish, and nothing solid is coming out, its okay.  I was initially worried I wasn't going to be able to take the test because I threw up so soon after taking the 2nd dose of the prep kit.  It all worked out though, and that's great.

Further Testing Needed, A Constant Reminder

Its been a little over 3 weeks since Frank (my dog) passed away. I still have nightmares about it.
BD said he saw Frank snuggled up with me when I was sleeping yesterday morning, for a split second, but it was his mind wanting to see that (he says).
Last week, I went in for a yearly check-up.  No big deal, pap smear and review mammogram results, etc.  Last year at this time, I was dealing with Shingles, and it was a rough summer, so I remember the timeframes for all my summer checkups now well.
My doctor did the pelvic exam and felt something.  She took off her gloves and said she was ordering an ultrasound.  This is not good.
Of course, the fear, thoughts and memories all come rushing back into my head.  I am told it could be a cyst and to not worry, but please call to schedule my ultrasound right away.
This sucks.  So, of course, I called while in the parking lot as soon as I left her building. 
Yesterday, I had my ultrasound.  It was a very unpleasant experience, but the tech was super nice.  It wasn't fun though. 
I am hoping my doctor calls me with the test results today.  I'm worried.  I'm scared. I'm trying to hold it all in, too.  Work has become second place in my life this summer.  I'm avoiding going to my parents house because as soon as my mom sees my face, she will know I'm worried and "something's up". 
Every bit of gas pain or creek in my body...every ache...I'm wondering if I'm cancer again. 
The mind is super powerful, but its a scary place to be.

Getting Over the Loss of a Loved One

Even though Frank was a dog, he was my dog.  He was part of my life, and the last year and a half, he was a patient nonetheless.  I was his caretaker, and with that, I would structure my day around Frank and his needs.  He needed to relieve himself (go potty) about every two hours (towards the end), take pills at 6 am, 2 pm, before dinner, and 10 pm.  I made his food.  He also became so used to me being at home, that he developed a serious attachment and would cry when I left.  He still needed his "me time", when I would put him up in his favorite rooms so he could lay on the bed and sun himself.  He could walk and jump just fine, but he wasn't allowed to do stairs in the last 6 months because of his back and his new development of seizures.  I didn't allow him to do the stairs, I should clarify.

Getting over the loss of a loved one is hard.  Last night, I relived his death in my dreams while I was sleeping.  Granted, it was completely different in dream world, but it was my main dream last night.
I still cry all the time.  I tear up when its just me and BD talking about him.  There are pictures of him everywhere, and its not easy to ignore all the times I checked on him during the day, felt him lean up against me at nap time or bed time, and especially during dinner...when he would bully me to take him up to bed when HE wanted to go, just so he could bully me for more Cheerios, his nightly treat.

I think its important to cry when my mind and heart are sad.  I just miss him terribly.  Our world is so upside down right now.  We are starting to get used to the new normal, but I don't like it.  I want to go back in time and have him and hold him again.  Even though he was a dog, he was a loved creature.  He was my little guy and was a big part (the main part) of my life.
I trust something happens when we die.  I have to believe I will see him again.  If there is a heaven and a hell and something inbetween, I want to be so good God will allow me to see Frank again.
God has been good to me.  I begged him to let me live when I had cancer.  I begged him to let me live because I couldn't leave Frank.  He wouldn't understand, and I never wanted him to think I left him and I abandoned him (even if it was because I died).  In the end, I think Frank was holding on and lasted so long for the very same reason.  I don't think he would leave me.  That is true love.
God gave it to me.  I lived and came back to Frank and took care of him while he was sick.  20 months of being sick, and 20 months I might have complained, but I would do 100 more months if it meant I could have him happy and not in pain and with a good quality of life.  The medicine just couldn't keep up anymore, and no matter what I would do, he was getting worse.
God was ready for my boy.  I think he and I both needed to realize that summation.

So, what a long entry.  I'm gong to post this in my Lisa is Living Blog, because I think its an important part of life for me right now.
Be sad when your heart wants you to be sad.  Feeling uncomfortable with the new normal is okay.  Knowing the new normal will at some point be just normal....well, that sucks.  However, its going to happen and that's okay, too...it will happen at the right time.

Over 1 week and still in pain

Frank died 6/7/19.
I'm still in pain.
I knew it would be bad, he was my best friend.  He was my patient.  He was my dog.
I was his person.
Making that decision was hard, but I decided that day it was going to happen.  I still begged the doctor to check to make sure I was making the right decision.  Part of me wanted the vet to say, "He has a few more days in him, don't do it yet."  But, the vet didn't say that.  The vet said it was a good time.
I hurt inside.  I feel guilty for not trying to wait it out a bit more.  Frank was the comeback King.  He would be doing bad, and then magically he would get better.  Maybe, deep down I knew he wasn't going to get better.  I also knew, although he wasn't in pain while at the vet, the night before was awful.  It hurt me to hear and see my dog struggling to catch his breath and stop coughing.  I knew it hurt him.  I couldn't chance him having another awful gut wrenching night like that again.
Regardless, it still feels sad to think about that day.
It hurts to come home to nothing.
It was the worst day of my life.  I love him so much, I'm having a hard time coping.  Sure, I have good moments.  I also "try" to do things.  Otherwise, I just lay around and sleep (or try to sleep).

AB says its still new.  He says its just been one week.  That little booger was my soulmate.  I wish I could have him back.  I wish I could tell him again how much I love him.  I wish I could pet him and hold him again.  The loss of a loved one is not easy.  I never knew how hard it was going to be.
And now, i'm crying again over it.

I just wish I can gain entrance into heaven one day so I can meet up with my Frankie again. 
I promised I would be a better person so I can see him again.  I must keep that promise, he means the world to me.

The loss of my best friend

For those who read and follow this blog, the last 20 months of my life was devoted to taking care of my puggle, Frank.
He was diagnosed with congestive heart failure October 2017.  He passed away on June 7, 2019.
I had to make that decision.  He was getting worse, and we kept giving him more meds to help stabilize the cough, but they weren't working that great.
Thursday afternoon I took Frank to see his vet.  The doctor did not respond in his normal fashion when he listened to Frank's heart.  He seemed worried.  He asked me to increase some meds and call on Saturday morning to let him know how Frank was doing.  That night, Frank coughed for hours straight.  He would cough until he couldn't breathe or catch his breath.  He would run circles and try to find a comfortable sitting or laying position, only to start coughing again seconds later.  I knew in my heart Frank was exhausted and sore, even in pain.  He finally fell asleep that night, around 1 or 2 am...and when he woke, he didn't want to move.  His neck was all stretched out, and he looked not himself.  I knew it was time, and I made that decision.  My boyfriend was sad, but I know he agreed.

We went in at 11 am.  Right before, he was finally feeling better.  I took him to his favorite park, and he walked a bit, but he didn't want to leave.  He was walking slow, anyway, and breathing hard.  We only stayed for a few minutes, and I had to carry him back. In retrospect, I wish I would have let him lay down outside for a few hours out there.

I asked doctor to let me know if I am making the right decision, and to please listen to him again and see if this was necessary.  He said it would be a good time, it was only going to get worse.  When Frank was first diagnosed, Dr warned me that the dogs don't usually pass in their sleep, and this disease is a hard, painful death.  I knew I would have to put him to sleep, but I didn't ever want to.  I didn't want him to experience death in fear or in pain, either.

It was a good experience, for euthanasia, I guess. Dr explained the process, and both of his assistants were present, and they all loved Frank.  They all kissed him and pet him.  I was able to hold him most of the time.  He even snored a bit before the final injection.  He went quickly, and even though I am crying now, I am happy it was done at the doctor's office instead of the emergency room in the middle of the night.  I couldn't let him go through another night like that again.  That might have been selfish of me to want to make sure his final breath was surrounded by his own doctor, nurses, and me.  We were blessed with a long journey, longer than anyone thought we would get.  We also were blessed to have Frank as long as we did.  Again, I am selfish, because it wasn't enough time.  I hope God knows I am grateful for every second.  Every trying second.  I hope he knows the amount of money we spent-- the frustrations with all the laundry, the carpet getting little piddles that needed to be cleaned up, the food, the attitude when he wasn't feeling well...it was all something I would do again in a heartbeat if I could.  None of it mattered.  Frank being comfortable, Frank healthy enough to keep going, and Frank living was all that mattered to me.

I hope Frank forgives me, and I hope he knows how much I love him.  Forever.  I just need to prove to myself and God I am worthy enough to see that little boy again.  I was bonded to him.  I feel like my heart is missing a chunk.  That little boy was there for me when I was sick.  He was the reason (I am sure) that I lived.  I could not die because I could not abandon him.  I rescued him, and I promised him I would be there for him, forever.  It hurts.  It hurts so much.  It hurts to put his stuff away and it hurts to decide what goes to a shelter and what stays.  It hurts to look at it if I leave it where it is.  It hurts to be home alone.  It hurts to think its time to take him potty or give him pills.  I would work in my home office all day, and talk to that little dude  ALL DAY.  Carry him up and down stairs, take him potty, take him to the doctor, pills 4x/day.  Water all the time.  Treats, his special diet.  My life was wrapped up in Frank, and when he napped, I napped.  I loved feeling him stretch out and press his little body against my leg or cuddle himself up in a ball in my nook by my chest.  One of a kind.

It hurts.

Ruff Last Night

Frank had a rough night last night.  The coughing started around midnight, after a potty break.
From there, he coughed every half hour or so into morning.
We went out again around 4:30, where he did his business, coughed some more, then came in.  I gave him a benedryl and cough pill.  After a treat from being such a good boy, he laid down. 
He coughed more, until about 6:00 am, and fell asleep.
I had to wake him at 7:30 for morning pills and another potty.
Less coughing, which is good.  I'm thinking we need to take the cough pill a bit more frequently again.

This is so hard for him, it hurts to see him in pain when he coughs that much.

My window for taking new appointments at work is very small--I need to be home for him.  With that, I am dealing with a small amount of clients right now, and I am okay with it...its tough.  I am just finally getting back my energy, but being up every few hours in the night makes it hard to be awake during the day.

The street department is doing stuff in front of our house this morning, and its really got Frank's attention.  I'm happy to see him curious about what's going on.  He isn't moving, just laying down, looking out the window.  He is not happy with them, though, and that makes me smile.

what its like to see a loved one dying.

So, Frank was diagnosed with Congestive Heart Failure in October 2017.  Its been about 10 months.
Frank is my dog, fyi.

Frank is one of a kind, as are most dogs whose owners spoil them.

Frank is up to about 20 pills/day at this point.  He takes benedryl 2x/day, hydrocodone 2/day, Vetmedin 3.5/day, prilosec, sildenafil 2x/day, Lasix 4x/day, Enalapril 2x/day, Spirolactin, and a muscle relaxer or pain medicine if needed (he hurts his back a lot and we think has arthritis, too).
Mornings are the worst.  I thought going potty 2-3x/night was rough, but no longer. 
Waking him up, hearing him cough with every movement is the absolute worst feeling.  I hurt for him, and there is nothing I've found that helps ease that pain.  He hates to eat breakfast anymore. 
He fights every morning pill.
But, by afternoon, he is usually doing better. He can't go on walks anymore because he starts to cough as soon as we hit the street.  The weather really messes with him, too.
I try to take him for little car rides through the subdivision, and he sees his vet about once every 2 weeks.  If he gets excited, he coughs.  If he runs around and plays with his toys, he coughs.

The worst is knowing its not going to get better.  Each day is going to be better than the next.  That is horrible.
He was originally given about 6 months, maybe a year.  We are at 10 months.  We've had a lot of good days.  I won't let him suffer, and I don't think he is suffering other than his cough and the morning routine.
Usually, by dinner time, he takes his pills, eats food, wants to play and wants treats.  So, he feels better as the day goes on.  Some of this is normal aging, I'm sure.  He's at least 10-11 years old, but he could be older.  Some days, he still acts like a puppy.  The pills make him tired, he hates when I stuff them down, but I hope he knows I only do it to help him feel better.

Its a guilt and a pressure like no other.  This is about him, but I am selfish and I mourn on how this sickness affects me.  I mourn on how we don't do what we used to.  I mourn on the future of being alone during the day without him, and it hasn't happened yet.
I mourn for him, too.  I don't want to lose him, and I keep telling him to go when its time.  I don't want to have to put him to sleep.  Who does??? really, who does, ever??  But, I won't let him think I ever abandoned him---I was too scared I was going to die in the hospital before and he would think I left him.  I will be there for him, no matter what.  It just sucks. sucks. plain and simple.

5 years since becoming a vampire.

This is a hard time of year for me.  Its been five years since it happened.  Its been five years since my life changed in what felt like an instant.

I refer to it (to myself, of course) as when I became a vampire.

Think about it.  I was dying.  I had maybe two days of life left in me.  Then, I was rushed to a big hospital in a major area to be treated. I was given blood or blood products daily.  I became very sensitive to light, sound, and my taste buds changed dramatically.  My appearance changed, skin became pale and pink, dry, and I lost a ton of weight.  Without receiving blood, I would die.  My sleep patterns changed.  Everything changed.  I had dreams of being chased by vampires nightly in that hospital.

Sure, it might be a modern interpretation of an old tale.  I'm one who has always been scared of vampires.  Even after I realized I was becoming one. 

To this day, I still think I am a modern day vampire.  The sun and bright light gives me instant headaches.  I wear prescription sunglasses even on cloudy days, and sometimes, in stores.  My senses are so acute, it drives me and my boyfriend nuts (I almost said Batty, no pun intended).  I get dehydrated easily, my blood sugar can fluctuate at odd times.  My tastes have changed, I crave more meats than before.  I sleep a lot...and take 2 hour naps during the day.  

Hey, its 4 am and I am up.  I will go back to sleep around 5:30 or so until 7 am.  

Even though I don't require blood, I get my blood tested and I still am so concerned about my numbers.

Here is the other thing: I am ridiculously scared of death.  I know we will all die.  I don't like that, and I am so worried about what happens after you die.  I will be faced with that eventuality, and I deal with those feelings and concerns daily, but I don't like it.  I want to live so badly, I can't explain it.

I've also become more of an introvert now than ever before. I do speak my mind and possess a different confidence, but in a stand offish kinda way.  Does that make sense?  I'm not shy to speak my mind, and I'm not looking for friends. I keep to myself.

I thought this would be a happy time, but this week I woke with a sore inside my mouth and again thought the worst.  I'm sure it was a cut from eating potato chips with my nieces the day before.  Its healing just fine.  That first day it was sore and noticeable, I was genuinely scared.  I kept it to myself, but it consumed my thoughts that day.

So no, I don't drink blood.  I look and feel the scar every day that became the entryway for me to receive my blood and chemo (my port scar).  I can't handle sunny days or very light reflective days because my eyes are sensitive from 2 years of Tretenoin pills.  My skin is crazy because I have allergies.  My nose is sensitive because I lost protective linings in my sinus cavities as a result of chemo.  I sleep a lot and at weird times because my body is tired and it gets tired faster now...when I was in chemo I would sleep 18-20 hours/day at times.  But, sometimes I sure feel like a vampire, because I am scared to die.

Still Tired, but healthy

So, I am still taking daily naps.

I get so tired, I usually go out around 2 pm and wake between 4-5 pm almost daily.

After dinner, I watch a bit of tv and am in bed by 8 pm.  I might not fall asleep until 9 pm some nights, but I do.

I try to get out of bed by 6 am, but again, it might be more like 7 am when I actually "Get Out" of bed.

Its been a long time of this --I'm wondering if its habit, or is this part of the New and Improved me?

Does anyone who went through a similar Chemo regimen or almost 2 years of chemo have this issue?  Does it ever go away or is it part of me now?

I am blessed to get another day.

I still strive and want to be able to go to my parents home to help out around the house and yard.  I still want to do more around our own home---I know it will happen.

I'm sure as I lose some more weight it will help.

Please, comment and let me know your story.  Anything hear ringing a bell for anyone?

Thanks- Happy Independence Day- be safe out there! God Bless

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Cancer- rebirthday

Yesterday, I turned 4.

Wow, time flies.  Almost two years I was treated for leukemia, and the past two years I have spent trying to get back to living.  Its been rough.

Yesterday, I was talking to my boyfriend about that day and what followed.  Everything that happened and came so quickly-- dealing with

• cancer diagnosis
• likelihood of never having children
• treatment-- chemo
• all the blood transfusions
• gallbladder removal
• losing my hair
• getting a port put in
• allergic reactions to medication
• all the vomiting
• losing my sense of taste
• increased sense of smell
• gaining lots of weight and losing lots of weight
• rashes
• yeast infections
• the shape of my tongue changed
• c-diff and wearing diapers
• shingles
• not being able to stand or think clearly
• wearing a surgical mask everywhere I went, even just outside
• money/insurance issues
• crazy headaches from the ATRA pills
• light sensitivity
• skin peeling all over
• losing my fingernails and toenails
• chemo induced menopause-- all the hotflashes (10/hour!)
• losing hair in places I didn't think was necessary and missing its purpose!
• exhaustion
• sleeping 12 + hours a day on the couch
• showers with the port
• port changes and daily flushes
• home nurse
• fevers
• pneumonia on Christmas
• wisdom teeth removal
• cracks in teeth
• becoming allergic to everything I use on a daily basis

Now its about living.

I am blessed to be alive.  Endless hours of golden girls during my treatment taught me nothing is the end. we keep going even after the show is cancelled.

February 2 is coming quickly

That will be my four year anniversary.
Its very scary to think of that.  At the beginning of the year, I had a cut on my tongue.  It was like a paper cut on my tongue, with a nasty flap of skin that hurt like a mother.
It hurt for about a week, and I went to see the doctor.  She had no idea what it was, at that point the flappy part was wrinkly and white, because it was kinda dying and drying out.

She wanted me to see a specialist and mentioned the word "biopsy".

I couldn't sleep that night.

I had the fear in me that I was sick again...this was the beginning of it all...again.

I honestly couldn't sleep or think for about 24 hours, but then, the salt water rinses started to help.  The pain got less.  The bump got smaller.  I could talk without pain.
I felt like an idiot.
A complete and utter idiot.

Try telling someone this story that hasn't had a crazy illness or fought for their life.  Try telling a story of how a bump and cut on your tongue led you to think you were going to die and think they believe you.  They won't.  They won't get it.  People won't even validate your feelings.  You are over-reacting. You are silly.
Am I?  Am I?  What happened to me is sheer luck. I am alive today.  But, the feeling of being deathly afraid of getting sick again...its real and its dark.  It is a mindgame.  I know that, but I can't shake it.

I can't seem to get over it.

I am utterly grateful to be alive and I sincerely try to give it my all each day, albeit I am still tired a lot.  I try to savor moments and I sometimes take it for granted, still, but I feel that's living.

When it comes right down to it, though, I am still scared out of my wits to get a new car, have a car payment, buy things, or even work too hard...because if it happens again...then what?

My head is a scary place.

How do you deal with it?  What advice can you give?  This is the time of year when every hot flash and night sweat has me nervous.  A cut on my tongue put me in a mind meld last week--- I didn't talk to anyone about it, either...it made me think awful thoughts.  I even thought I shouldn't put BD through this again.

I need a vacation from my head at this time of year.  Its too much.

Happy 2017!

So, this year, wouldn't it be great if they found a cure for all cancers?

Recently, one of the strongest young ladies that influenced me (emma Rose) has relapsed with her leukemia.
I wanted to send a big virtual bear hug and sincere good thoughts to you Emma!
You are a strong warrior princess...and I know you will beat this yet again!

You have influenced me in how I fought my leukemia.  You have influenced me to help others in need...from baking cookies and delivering them to my doctor's chemo area, making gift bags to those staying in the hospital with things like lip balms, puzzle books, and good soft kleenex, and even starting a cancer support group at my church (we didn't get much activity, but we tried).
Your positive attitude helped me with my fight-- I had just been diagnosed and found your facebook page and it helped me in numerous ways.  I remember being up in the middle of the night, lying in my hospital bed, and just crying.  I was nervous.  I was lonely.  I felt like I was being punished by God.  I was scared.  I felt like my life was over.  And, I got over it.  I cried and I missed my family.
I felt like a big experiment.  From my skin breaking out in an itchy rash to the yeast infections to the skin peeling off my lips constantly.  Getting c-diff, being denied coverage on necessary medications, and mouth sores and daily blood products were just the icing on the cake.  Now I know.  Now I brave whatever comes at me...and I have your positive attitude that helped me look at things differently.
Thank you.
You Got This!

If you would like to help Emma collect toys and giftcards for children at her local hospitals who are fighting cancer--- please help her here:
https://www.amazon.com/registry/wishlist/2KHP1FSC327DA/ref=cm_sw_r_fa_ws_ui-Swb0H1VBZ8

For more info on her awesome idea and Emma, click here:
https://www.facebook.com/EmmaRose4P/

What happens when we die?

I am having a terrible time dealing with what happens when we die.  Lately, it just seems to be something I keep thinking about.  I wish we knew.  I wish it was easy...we go here, there...somewhere.  We continue to exist.  My fears grow every day that we no longer exist and I don't exist...I can't imagine it no matter how hard I try. 
I can't imagine not existing.  I can't imagine being no longer my soul, if that makes sense. 

Dental issues after cancer

Yep.  It can happen.
It is happening to me.

Last night, my mom asked if it was from the cancer, chemo, or just from my genes/oral hygiene.  I have a feeling its a combo of all of that.
But, can I express that I had daily chemo and lots of it...both IV and orally.  During that time, I used a sponge or a baby toothbrush (no joke) and could not floss or use listerine.  I only used Biotene when I could tolerate the taste (let's make that another topic for another day).  The chemo's main goal was to kill off my blood production so my bone marrow would reset, so to speak.  I would stop making platelets, hemoglobins, and especially we wanted my ANC to drop to as close to zero as possible.  I really feel this played a big part in my dental issues today.

Hits out of nowhere

Woke up this morning feeling like crap.  A cold is coming on quick. Last night, I woke up and felt like something hard was in my throat, and I just couldn't clear it.  It hurt and my sinuses feel full.

This morning, my eyes are watery, don't want to stay open, and I am exhausted.

My head is a bit achy, I'm sniffling and blowing my nose.

This is not good.

I can't get sick.  I'm not up for another month of being sick.

Everyone always asks about my numbers, because "my numbers" were an important gauge on my health at the time.  Guess what?  My numbers have been stellar for quite some time.  However, just because I have a decent white count, it doesn't mean they know what to do!  I feel like my immune system is there, but they are loafers...just not working like they should!

Stay Strong, Shannen Doherty, many of us know exactly what you are going through.

http://www.today.com/health/shannen-doherty-s-breast-cancer-has-spread-unknown-scariest-part-t101358

The article popped in my feed on Facebook and Yahoo! the last few days.  Shannen Doherty has breast cancer, and the pictures of her losing her hair, looking fragile and thin, and the worst news for anyone...the cancer has spread.

Its all over ET (Entertainment News), Yahoo! Bing, MSN, Today.com, facebook, twitter, and GMA (Good Morning America).  The sad thing is I was in high school when Beverly Hills, 90210 made its way into pop culture.  I was a freshman, with long dark brown straight hair and blunt bangs.  I had big plump lips and big eyebrows.  I felt like Brenda Walsh...in a new world...high school in Northwest Indiana in 1990.  Life was good and everything was new.  The digital age was coming, and nintendo and Sega Genesis were all the rage.  MTV still showed music videos (well, now we will have Classic MTV soon, right?).
I grew up with Brenda Walsh and then I became an adult while Shannen played on Charmed.  People my age can relate.  I fought leukemia, so I can relate on another level.

My heart goes out to not just Shannen, but her family as well. My heart goes to everyone who has been affected by cancer.  Family, friends, patients, caregivers...

In fact, today, I talked to my good friend, Sonda.  She is wonderful, we met when we both worked for the same real estate company, practically ten years years ago.  Today, Sonda has her own daycare she runs.  She is passionate about life, God, and her family...and I feel the same, so today was a great day, because I got to talk to my friend, whom I adore.
She reminded me to trust God, he got me this far.  He blessed me so many times, why would he have me go through all I went through with my leukemia, just to let me get trapped up in my own fears...the fears of relapse, the unknown, other health issues, more cancer...you name it...why would that be?  She is right.  I hold a fear of the unknown very strongly...and it keeps me from doing even greater things in my life.

That has to stop today.  I need to put that fear aside and become fearless.

Suck it up, buttercup!  

PS
Shannen: If you read this, hang in there!  It's not fun, regardless of what type of cancer you have--- chemo every day like me or once every week or two weeks...it sucks and we are not ourselves, but we are in warrior training through it.  I feel its like a conscious coma, we are going through the actions, we know what's going on, but its surreal and when its done, you won't think it was that bad.  What happens to our bodies makes us think we are experiments--- that we pay for.  Insurance companies are headaches and nightmares that we think about daily.  We miss a lot and we feel like a dish in the china cabinet everyone is afraid to touch----like we might break.  People you love will be scared to come near you or even touch you....why, for various reasons.  Don't let that break you--- be strong, be you.  You are not alone, and you will get through it.

sometimes we all need a little inspiration!

Have a great day, and be sure to be unstoppable in all you do!