The Road Ahead

Hello Friends,

The last six months, have been a full six months.  Full of awesome highs (nearly no evidence of disease, and starting a maintenance drug), and full of valley lows (losing one of my closest new friends to this awful disease).  After Christmas, my blood counts were so low, that I thought I was going to die (literally).  I never have felt so close to death as I did between Christmas and New Years.  I even started to write letters to my children regarding how I wanted to be remembered by them.  I had consistent bloody noses that would take hours to stop up.  I eventually went into the hospital, and got some blood.  I was counting down the infusions until the end of Gemzar and Cisplatin– the beginning of February.

Mountains Near Breckenridge

In February, my sister-in-law and nephews came out for a visit.  Colorado was not kind to them.  My youngest nephew started throwing up before the trip, and my eldest nephew, who has Type I Diabetes got food poisoning towards the end.  The poor child couldn’t get out of bed.  I was running a fever, had a cough, and felt generally shitty.  I knew since my counts were low, it would take forever to recover from my cold, which ended up being Influenza A (found that out after my son caught it).  After we both got over the flu, we ended up going to Snow Mountain Ranch (YMCA of the Rockies), and rented a nice secluded cabin in the woods.  I still was not up to skiing, and hung out mostly in the lodge.

YMCA of the Rockies

In March we found ourselves back at Disney World and visiting my mom for Spring Break and Easter.  I did not bring my camera then, but I have a ton of beautiful iPhone pictures of Disney.  When we returned to Colorado it was time to trek up to Denver and see Dr. Corr at UCH Aurora campus.  We found out that my CA-125 had increased to over 600!  Since my symptoms coincided with a possible aneurysm, I was given an emergency CT Scan.  I did end up getting my Avastin infusion (maintenance drug), and the next day found out that my two spots had turned into 5 spots with the largest on my rectum.  On April 7th, I signed the paperwork to start a clinical trial.

Crestwood Falls at Crestwood State Park

I made several trips to and from Denver to participate in the clinical trial.  I had a CT scan, a brain MRI, a biopsy, and more vials of blood drawn than one could imagine.  By the time I began the trial my CA-125 was over 900.  The clinical trial is a immunotherapy drug called Durvalumab and a vaccine therapy (immune system booster) called IPH2202.  The Durvalumab is supposed to highlight a protein to the immune system in the cancer, and IPH2202 is supposed increase my bodies immune reaction.  So far the side effects are very minimal, and I feel great.

California Poppies Growing Wild

As of today, I have had two infusions.  I have no increase of cancer symptoms (the symptoms have remained stable– no increase is a very good sign, as I have not had chemotherapy in over 4 months!), I have good energy, and I feel wonderful.  In two days I will be embarking on a photography adventure road trip, and I will be documenting it photographically and on my blog!

We are traveling to the Grand Canyon.  I will be witnessing the a sunrise over the Grand Canyon.  After that, we will be traveling to Las Vegas.  Where I will be photographing the strip, going to the fountain show at the Bellagio, and the pirate show.  I, of course, will play a few games of chance ;).  From there I will be heading on Rt 66 to California.  I have never been on the West Coast.  We will be in Malibu, at Disneyland, visiting an old friend from our time at Vilseck/Rose Barracks, and then trying to see a few stars :D.  Then from LA, we will be driving north along the Pacific Coast Highway to San Francisco (some of the highway is closed, but I’ll see enough of it.  From San Fran, we will travel northward to the Redwood National Forest, where the Ewoks live :).  Finally, we travel back east going through Oregon, Nevada, and Utah to the Arches National Park, and back home.  My goal is to master the manual setting on my camera.

Purple Wildflowers

Cancer has given me a new appreciation for life.  It is hard to know that one day I will die from this disease and follow the path of my sisters before me.  Life is fleeting…

Rest In Peace:

Jessica Gladstone
Jann Lenhart
Tracey Young
Sue Alvarez
Lori Hamilton
Sarah McGerrtrick
Eileen Albert
Betty Burnell
Leigh Reel English (Liver Cancer)

Song of the Post:  “I’ll Stand By You” Rachel Platten

Losing My Religion

“That’s me in the corner, That’s me in the spotlight, Losing my Religion…”

Move over Rover, Cancer has taken over…

I’m almost done with my fourth line of treatment (technically my third line of chemotherapy).  This one is doing what every other regimen has done, kept me stable, and kept the cancer at bay.  I should be satisfied, but I am not.  I want it gone.  Since camp I have lost four friends to this insidious disease.  I hate what it has done, not just to me, but to my family.  Things that are certain, are no longer certain.  I think the most disruptive thing it did was cause me to question my religion.

I have always heard that God never gives you more than you can handle.  Then the first uncertain thing happened.  My son was diagnosed with autism when he was two.  I read a blog post, or a poem, called “A Trip To Holland,” so instead of Italy, we are going to Holland, land of Tulips and wooden clogs.  Holland had many adventures– to include adverse affects from immunizations, seizures, child abuse at school, etc…  But there was always God and Jesus to take the burdens.

Then my dad died.  It was unexpected, but expected.  Dad was not very good at taking care of himself.  He believed in miracles.  He made his dreams come true.  He lived in the best place in the world, Disney.  He loved and lived.  He passed away from a heart attack. This put our family into a tailspin.  I stayed with my mom a few weeks, and my daughter stayed there for a little bit longer.  My mom was thrown into widowhood, and I was thrown into a slight depression.  At this time, I started to notice that my back pain from 2014 was returning.  I thought it was from switching from outdoor running to treadmill running in the humid summer.

In October, my daughter started stating that she was going to commit suicide.  She would have tantrums that turned violent.  I was kicked in the face at one point.  She started to put on weight.  It was unreal.  We eventually had to have her hospitalized at nine years old.  We discovered that she had ADHD.  Again, ADHD is something we can handle.

In November and December, I started to feel more and more symptoms.  I felt tired all the time, I would go running, and feel done.  I wrote it off as stress, depression, whatever you can call it.  I also felt a huge amount of guilt.  I was too tired to do my normal routine.  Looking back on the schedule– I got my daughter into counseling appointments, Occupational Therapy, sleep studies, and eating counseling; Ryan needed ABA therapy, OT, ST, and Neurology every three months, which was a drive to Pensacola Beach; and I was seeing a personal therapist and marital counseling.

In January, I went in again to complain about whatever was going on.  I was tired, I was having difficulty breathing, I had a backache.  Something was wrong.  I ended up leaving in tears, after the doctor forgot about my appointment.  I switched to Tricare Standard.  Saw a new doctor.  She ended up suspecting that I had a silent heart attack.  I had an odd heartbeat, and she could hear fluid in my lungs.  I got a lung x-ray.  I had a large pleural effusion in my right lung.  Within two days, I was diagnosed with cancer, stage IV.

Every day since then, I prayed and begged God for my life.  I prayed that He would cure me.  That He would take this burden from me.  I prayed that my children would not be left motherless.  I have seen, and experienced what happens to children when a parent dies.  Even at 40, it is difficult, but kids are 12 and soon-to-be 14.  I can’t take the thoughts what it’s going to be like without me– I know it sounds selfish, but that’s the thought that depresses me the most.  I don’t want to die early.  I want to see the milestones– I want to see my son walk the graduation walk, I want to see my daughter get into her dream college (which right now is “the best college ever” for math and engineering), I want to see my daughter married, I want to meet my grandkids.  I don’t want to be the picture in the corner, or the person that people will tell my kids to get over already (I have heard someone say that to a child of a cancer patient).  I don’t want them to tailspin out of control.  And God is not listening.  He has stolen four friends on this Earth.  And now none of the treatments are working completely, but it is not gone.  I hop from one treatment to another.  I have been abandoned and my children are being abandoned.  How can I believe in someone who is not supposed to give me more than I can handle, when I cannot handle this?  How can I feel that He has this, and the burden is not mine, when it is hurting my family?  So here I am sitting in my corner, in my spotlight, slowly losing my religion…

I Have A Confession…

I’m going through a really dark period right now.  I have lost my mojo.  I have lost my desire to write anymore, my desire to take photographs, and a lot of happiness.  I am doing fine physically.  My CA-125 (the cancer marker) has been slowly decreasing every three weeks.  I am going to be taken a much needed break, and see if the mojo comes back.

Just an FYI– if you are a caretaker, or family member of a cancer patient, do not do an emotional intervention with said cancer patient in the middle of a harsh chemotherapy, particularly when said thing you are intervening about is five years old…  The longterm effects are incredibly negative.  Thanks…

 

I’m Still Here…

Hello friends, it’s been awhile.  A lot has happened, and I have been busy, but I have not forgotten you.  Where to begin…  I finished up Doxil chemotherapy in May.  I was stable, some of the tumors were even starting to shrink.  But the doctor wanted to save my last eight infusions for another time.  Desperate times call for desperate measures, and we are not quite at desperate measures.

In June, we moved.  We left Florida forever (I will visit, but I will never live there again).  I was regaining my health, and I found my new sanctuary in Colorado.  Florida was beautiful in a tropical way.  There were tropical smelling flowers, calming beaches, and thick forests.  Colorado is beautiful in a mountainous, rugged way.  There is wild life walking through our yard, song birds of every variety, and hummingbirds galore.

We got settled and used to our new surroundings.  I sat out in the cool evenings and watched the sunsets.  In the mornings, I drank coffee and watched the sunrises.  Then things started to brew.  A few months into moving, I had my first bout of illness.  Easily explained– it was the coffee.  I was not used to drinking coffee, and coffee used to make me sick.  I had a biopsy, too.

In July and August the storms started.  The illness struck again, but this time it was Kale.  I was trying to change my diet, and it had to be kale.  It was too rough on my digestive track.  The numbers on the scale were starting to creep up, despite me being a little more active.  I decided I was going to hike the Bar Trail next year (13 miles walk, 7000 foot elevation gain).  I had started to even run.  I was accepted into Camp Mak-A-Dream.

Then in August, the poo hit the fan.  The first week, I was sick, then I had a week where I felt a little better, then the next week I was sick.  I had an appointment with my doctor on the 21st.  The evening of the 20th, I got really, really bad.  I had lost control of my bowels, I lost control of my bladder.  My hands and feet contorted, and I could not move them.  I had soaked a shirt in sweat.  I stripped naked, and sat on the toilet for nearly three hours.  I alternated between vomiting and having diarrhea.  I didn’t know if I should go to the ER, or wait.  Finally, the Zofran, Imodium, and Tylenol took affect, and I was able to put on a Depends, and go to sleep.

The next day it was confirmed.  My cancer was no longer stable.  It was growing, and producing fluid in my abdomen.  I had gained 20+ pounds over the summer.  I went from a size 10 to a size 14 by the time I saw the doctor.  The fluid is called Ascites (pronounced- A-CEE-TEES).  I was going back on chemo stat.  The new regimen– Gemzar, Cisplatin, and Avastin.  Three days after my first infusion, I checked my weight.  I was down over 15 pounds!

The side effects weren’t bad.  They were there.  I got my second infusion on Labor Day.  Yes, the nurses in Colorado work on Labor Day.  Nurses are my heroes.  A few days after my second infusion, I left for Montana!  I was a little bit nervous.  There’s forest fires in the area, but I had fun.  I tried a lot of new things– horseback riding (I hadn’t been in over 20 years), archery, photography (next time I’m bringing my “nice” camera), writing, painting, and I could go on and on.  The biggest thing for me is I made life-long friends that I would never imagine I could make.  You see I have difficulty making friends.  But the women I met there “got it.”  The complaints I had about family and friends, who didn’t “get it” were the same.  They understood that since my surgery I tend to fart loudly, that there are certain things I don’t enjoy anymore, and understood the time I wrote ten checks, because I could NOT remember how to write a check (chemo brain is no joke).

 

After four glorious days of forgetting I had cancer, enjoying the company of my new sisters, and just an amazing time.  I came home.  On Tuesday (the 12th), I started to have cold symptoms.  It was just a cough.  On Wednesday, the cough turned into a deeper cough, fever, and dizziness.  I drove myself to University of Colorado Memorial North Hospital late Wednesday.  I was admitted into the cancer-ICU ward (it’s combined).  Several blood tests, infusions, oxygen, and fevers as high 103.6 later, I was diagnosed with influenza a.  I posted on the group Facebook page, and we discovered over 20 women had similar symptoms, six of us with the full blown flu.  I’m the only one still in the hospital.  My platelets are recovering, my white blood cell count just went up.  My bone marrow is non-existent.  I’m on anti-viral medication, anti-biotics (even though I don’t have a bacterial infection, they are keeping me on it because I have no immune system), and some other medications.  I am hoping to go home on Tuesday, but who knows.  My chemo on Monday is cancelled.

The silver lining, because there is always a bright side, I get to catch up on my blog.  I have edited some photographs, read a novel, done word puzzles, watched football, binge watched USA Networks Movies, and decided that I am going to play with plastic pumpkins and glitter, paint a few of my sunset pictures, do a mountain mosaic, and brainstorm on how to open an online gallery called “Teal Expressions”.  There isn’t much sleep to be had in the hospital though.  But anyway, you’ll be seeing more of me later.

Teal Expressions is an idea I have been playing with for a long time.  I would like to have an online storefront gallery with women, who are battling (or have battled) ovarian cancer.  It would be an opportunity for artists to earn money, raise money, and express their art.  You can submit anything from visual art (prints, wall art, postcards, greeting cards), wearable art (jewelry, scarves, blankets, shirts), or media art (self published, poetry, self-published prose, produced music).  If anyone is interested in assisting me on creating Teal Expressions, please comment below.  I am in the planning stages right now.

 

 

 

 

 

 

Dogwood Photography Weekly Challenge Week 8: Panorama

I skipped week 8.  It has been a hectic week this week.  My husband has been in China, my kids and I had a lot of appointments, and I had chemo today.  Week eight was a panoramic picture.  I went to a local military beach and snapped this picture and merged it in Light Room.

My infusion went well today, though I’m considerably tired.  I did get some really positive news.  My CA-125 reading went down 40 points!  The doctor is going to continue me on Doxil.  I’m still planning on going to next base to talk to the doctors about clinical trials.

Here are some more pictures from the shoreline along the Chochtawatchee Bay in Florida…

 

Dogwood Weekly Photography Challenge Week 9: Shadows

This week’s challenge is artistic shadows.  I tried taking several shadow pictures, with very little luck, but at last week’s Mardi Gras, I was able to capture these beads laying on the boardwalk in the shadows of a building.  That’s all I have to say about that.

It has been a crazy few weeks, and that’s why I am behind in just about everything.  I gave up Facebook for Lent.  I haven’t given it up 100% though.  I still go on and read statuses, sometimes I post a little bit.  I mostly post my photography, updates on cancer, and updates about my friends.  Recently, I posted regarding my friend, Becky, who passed away.  It’s the fifth death in our little local cancer group.  It’s the first person I have known quite well.  So her death caused me to go into a tailspin.  I have had to talk myself down a few times this last week.

I’m still stable.  As in my cancer is not growing, it is not shrinking, it is remaining the same.  It feels like the last two weeks of each chemo cycle it grows, but once I get chemo it shrinks it.  It’s frustrating, and annoying.  I find myself on my downtime doing a lot of research.  It’s hard to explain to people that I have cancer, but I feel great (for the most part), and I don’t look like I have cancer.  It’s definitely one of those invisible diseases, and it’s really hard to explain that you aren’t terminal, but you aren’t entirely well.  I feel like I have a ticking time bomb inside me.  One day it’s going to explode, and I’ll be like Becky, slowly fading away.

 

 

An Open Letter…

Apparently I have a hater, who has gone from a few blogs I have guest-wrote, my own personal blog, comments on another article, my Caring Bridge, and a few other personal sites.  This person, for whatever reason, has decided I’m “faking cancer, am a troll, and have committed Stolen Valor.”  I spent my day e-mailing administrators at Caring Bridge, Go Fund Me, and various other sites to straighten out the accusations.  Instead of running away, and hiding, I would like to address these accusations head on.

This is not the first time someone has accused me of faking this illness.  The first accusation came a year ago, when I first started this lovely adventure.  It was from a running group I belonged to, so I’m not surprised that the accusations have come to light again.  And I think it’s common to accuse writers of making stuff up to gain hits, sell stuff, or even make money from something so heinous.

I can assure you that, despite my deepest wishes, I do have cancer.  Specifically, I have Stage IV Serous Carcinoma of the Ovary.  Currently, my cancer is in 4-5 spots in my abdomen– four lymph nodes and one small tumor located on my pleural cavity, sticking out of my rib.  I have done 26 chemotherapy infusions, two surgeries, and spent countless hours laying in bed so tired that I can’t even think straight.

My purpose for writing about it, sharing it, talking about is two fold (and believe me I am not being paid for any of it).  First, if I can save one person from the pain I went through it would be worth it for me.  Ovarian cancer is insidious.  I had very few symptoms, and the symptoms I did have are so subtle that they were easily explained by something else.  Secondly, it is very therapeutic for me to write about my illness.  It helps dealing with it.  Whether it be an open letter rant like this, or comedic naming my of my tumors– the one on my rib is Quatto, and the one in my rectum was Felicia.

So to the hater, I’m not going to provide overwhelming evidence that I have cancer to make you feel better.  Not going to post a picture of my pathology report, or my surgery.  I am not going to name drop my oncologist (he’s a really cool guy though, and I recommend him).  I’m not going to post my DD-214 to prove I was a veteran, or my VA award letter to prove I’m a disabled veteran.  I’m not going to post a picture of my husband to prove I’m a military spouse.  I am well aware that any you wouldn’t believe any of it any way.  I will tell you that your reports got to the right people, I was informed, and provided adequate proof of illness, and my various blog postings, Go Fund Me, and comments I made on other blog posts were not removed.

I understand your reasoning for questioning anyone who goes online and says, I have cancer.  There are sick people out there who DO fake cancer.  I actually with the help of the NY State Police, and the VA did out a faker.  She was arrested and currently facing charges for fraud.  Fakers happen.  A little piece of advice, though, once you report a faker, and appropriate action is taken and proof is provided– please do not continue to malign and harass the individual you reported.  Stalking only delegitimizes your claims of fraud.  I was contacted, and I provided enough evidence that any investigation into the matter was dropped…

That being said, for those who want to know how to spot a faker, I’ll give you a few guidelines:

1.  If it sounds too good to be true, than it probably isn’t true.  Same goes with negative news.  If it doesn’t make sense it’s probably not true.  For example the faker I outed, said she was on oral chemotherapy for ovarian cancer.  Usually front line chemotherapy for gynecological cancers is IV carboplatin and taxol.
2. Strangers asking for money.  I did end up needing to fundraise.  I didn’t ask for money from strangers, I posted on my Facebook.  A few of my classmates saw my fundraising effort to get on a clinical trial and it was shared on my alma mater’s website.  Most patients needing fundraising will not ask you for money unless they know you.
3. Ask for verification.  If you have questions about whether someone has an illness, or is getting ill-gotten gains.  Ask questions.  Ask for doctors, ask for references.  Ask.  If anyone had any questions about my cancer, I would gladly have answered any questions.
4. If you are still in doubt, report it.  But don’t let the anger consume you.  Be like Elsa, and Let It Go :)!

 

What The Hell, I Might As Well

I am making a list.  Kind of like Santa Claus, but kind of not like Santa Claus.  It’s called my  “What The Hell, I Might As Well…” list.  It’s not really a bucket list, as I have accomplished most of my bucket list items– I ran New York City Marathon, went scuba diving in Guam, climb Pike’s Peak, saw a few celebrities (including a celebrity crush– Hugh Jackman in New York), I saw a Broadway Play, watched the sun rise, swam with dolphins, been in the Empire State Building…  This list is arbitrary weird things I always wanted to do:

1. Write a Star Wars Novel.  I know that it will never get published.  I’m going to publish it on a fan fiction site.
2. Publish a chick lit novel.  I wrote it, but I got to pitch it to a publisher.  I don’t know quite how to do that.
3. I would like to go to another foreign country.  I don’t which one yet, I was thinking Africa, but my oncologist said I can’t go to Africa.  I asked at an appointment if I could travel while on treatment.  He said, “I don’t see why not, it’s not like you’re going to Africa.”  DAMN…. SHOT DOWN.
4. Drive a sports car as my primary mode of transportation.  I want a Mustang.
5. Get paid to do something I love– like having someone buy a picture I took, maybe sell my novel.
6. Own another puppy.  I want a red Siberian Husky with blue eyes.  Love my pups, but I want that darned red Sibe.
7. Live in a big city again.  Tired of these quiet little rural cities.  This one is about to be checked off.
8. Build a house from scratch.  I want to design my next house.  I want funky colors in my bedroom, I want a bathroom with a huge glass window made by Angela (Big Orange House).  I want my photographs framed and put up all over the house.
9. I want go get soaking wet in a thunderstorm.
10. I want to see Niagara Falls, or Carlsbad Caverns again.
11. I want to go to the Academy Awards, or Emmy’s, or Golden Globes– something to dress up for, and meet people– I know it’s the strangest ass thing, but I want to go to it.  I love movies.  I have been in two, it might be cool to be in another, or a television show…

That’s about it.  What’s on your What The Hell, Might As Well list?

The Big Bad Wolf Has Returned

Or it never left, either way, I am back in treatment :(.

On Friday, I went to the doctor to find out the bad news.  Fortunately, it is not 100% bad, and not dire, as I have very few symptoms.  I will be going to Houston in the next couple weeks to see if I qualify for a clinical trial.  I started a GoFundMe, and my former classmates at Park Center have funded the first trip to Houston.  A charitable organization has offered more funding.

I have been asked a lot what were the symptoms, what should you do if you suspect you have ovarian cancer.  My doctor has called the disease a sneaky bastard and that’s what it is.  I’m going to go into some gory details, so if you are squeamish, or a man, you may want to turn around and run lol…

Symptoms:

• A change in my period, PMS, and ovulation.  My period was irregular since I was a teen.  Instead of getting more irregular, my period actually regulated.  At ovulation time it was painful (which I joked for almost a year with my husband that I was finally ovulating, I had lots of trouble getting pregnant). PMS was a BEAR.  I was exhausted, nauseous, and had heavy cramping.  My period was also very heavy and I had increased cramping during it.
• Lower back ache.  Closer to my diagnosis, I developed an intermittent lower back ache. I had been injured the year before– S-1 Joint hurt, so I thought it was my injury.  The cancer had cut off the uterer between my bladder and right kidney, and I was in stage one renal failure.
• Malaise.  I was BONE tired.  I had the energy to run, but as soon as I got home from my runs, I was DONE.

Anything can cause these symptoms.  If you are concerned that you have these symptoms and bloating, constipation, difficulty breathing, painful sex, weight gain, and stomach upset, please see your gynecologist.  If you would like specific tests, request a CA-125 (which is a cancer antigen).  Many things can cause it to elevate, so be aware that it may not be accurate measure for disease.

 

The Word Of The Day– Anxiety

I took this blue-tailed skink at the park on Sunday.  It’s been a LONG four weeks.  It started after my first post-cancer appointment.  The doctor said, “You look great, welcome to remission.”  Then a few hours later, I got a phone call, “Hold up, your CA-125 (cancer antigen) is abnormal, and you have to schedule a PET Scan.”

Then, anxiety hit, and hit HARD!  First, it was scheduling the exam, which was cancelled THREE times, because the machine was broke.  Finally, I got the exam scheduled, and I had anxiety about the scan itself.  It’s a three hour test, and you have to sit in a room by yourself for an hour after getting an IV.

Now, it’s waiting for the results. I didn’t realize that if the scan is clear they don’t call you and tell you its clear, instead they call you, and make an appointment.  Every thought goes through your mind.  I hear the doctor saying, “Your cancer never went away, your cancer is back, kiss your kids good-bye, your going back on chemo, or congratulations– you’re all done.”  The nurses, techs, and doctor gives you no hint at what’s coming on results day.  From what I know is if it’s bad– he tells you to come in immediately, or the radiologist calls the doctor quickly.

So now, here I sit, with scan anxiety.  What are the symptoms?  Every symptom of cancer– real and imagined.  I have not slept, I have barely been able to eat, I am irritable towards my kids, I rage, I swear, and I cry.  It takes every ounce of energy to go about my daily life.  I have been officially diagnosed with PTSD.  I feel utterly INSANE.  It is not a condition just for Army Troops returning from war.  Last night at 3:00 AM, I swore I smelled and tasted saline, which is a sensation you get when you have an IV inserted.

What can you do?  If you are the praying type– please pray, if you are an atheist, just send me positive thoughts…  I need them right now.