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…

July Camping

In July we went camping.  It was our first Colorado camping trip and we had a great time.  We went to Eleven Mile State Park.  I don’t even know how to describe where it is, but it’s on the other side of Pike’s Peak.  The reservoir runs along a river fed by snow melt.  The lake has Northern Pike, Salmon, Trout, Bass, and Crawdaddies.

Yes, that’s right Crawdaddies, Mudbugs, or crawfish, the little red delights that are often found in the French Quarter on Mardi Gras.  They were in season when we got there.  Some of the park rangers were having a weekend seafood boil.    We were surprised to say the least.  Unfortunately, our boat is broken, and Shane had to take it to the shop after we got home.

While the kids and Shane went fishing, I walked around camp, and took some pictures of camp. I found one of the Colorado Springs Rocks.  The staff from a beauty salon in town had hidden rocks throughout the park.  There were a lot of song birds too.  The top two pictures posed for me on the picnic table.  The other bird and rabbit were regular visitors to our campsite.

 

And flowers galore!  We took hikes on the third day through the pine and birch trails.  I have traded tropical flowers for wild flowers.  Succulents, red poisonous berries, and other fragrant flowers.

 

And of course a new toy.  I sucked it up and bought a super wide angel lens.  It took perfect pictures of the landscapes around our camp.  I could get full mountains without turning my camera all sorts of different directions.  I still haven’t figured out astrophotography.   But hopefully I will be able to take pics when I get out of the hospital.

And we had our security system.  She LOVED sleeping outside, and getting in touch with her wild side (chasing ground squirrels and birds).  Thor didn’t pose for me.  He would walk up to me every time I put up my camera.  The only time I can get a good picture of him is if I am at the end of the yard, and he’s running towards me.

 

Dear Mr/Mrs Future President…

Dear Mrs. Clinton/Mr. Trump/Mr. Johnson/Mrs. Stein,

One of you will have the ultimate honor of being the next commander-in-chief.  All four of you have promised in one way, or another, to take care of veterans and military families during your campaigns.  As a military veteran and military spouse, I have an interesting insight on how you can truly help us.

First of all, throwing money at programs with a fancy name is not going to provide much help.  For the last 14 years of my husband’s 19 years of service, I have been unemployed.  For the most part, I volunteered to be the stay at home mom, but when I was ready to return to work, I discovered much to my dismay that my commission, 40% disability rating, and experience meant next to nothing.  The “real world” is like the honey badger, it doesn’t give a f(#*.  It doesn’t care that you race directed three 5-kilometer races, and raised over $70K for autism charities.  It doesn’t care that you are a published author, that you gave away your artwork that you work extremely hard on, or that you have put the free freelance for years.  The real world doesn’t care.

Secondly, please change the EFMP system for special needs children.  My son is one of those military children that have fallen through cracks.  He has been written off as uneducateable by the local school system.  He was ABUSED in a classroom, and sadly there was NOTHING I could do about it.  I tried hiring a lawyer, but the local school district had all education lawyer on retainer.  I tried writing the newspaper, and I was told by readership that they didn’t want my child bringing down the standards for their children.  I even contacted Dr. Phil, but my husband didn’t want to go to on a daily talk show.  How can you help with this?  Make school districts for ALL special education students (not just military ones) accountable for not following the law!  It is amazing how back asswards some districts are.  The military is a powerful way to affect change in educational standards for special needs kiddos.  Basically, if the military start refusing to send families to school districts that systematically ignore the law– it will hit them where it counts.  The military where I live has a strong positive impact on the local economy.  There are over 10,000 family members in the state I live in now with special needs, and if those families were to move, it would negatively impact an economy.

Finally, the number one employer for veterans is actually the US Government.  One thing the government can do to make it easier for veterans is make the application process less cumbersome.  The complicated application process makes applying for a job a daunting task.  Many veterans quit before the accomplish their application.  The transfer and application process makes it difficult for veterans and spouses apply for jobs.

The Curious Case Of Jodi Vetter

I am writing this blog on an iPhone. I have been experiencing a surprising health crisis. I thought that I was doing everything right. I am nearing 40, I watch my diet, and I am active– I lift, I run, I bike, and swim. I didn’t think I needed to go to the doctor, because a. I was in tuned to my body, b. I enjoyed being blissfully unaware of my own mortality, and c. I would KNOW if I was sick. Turns out me being active was nearly my undoing. It could still be my undoing (please pray).

My story started about a year ago, I was experiencing some discomfort in my back. I had gone into the doctor, and was told it was a back injury. I went through the  physical therapy program, was declared not injured and went about my life.

A few months later, I experienced some dull aching pain in my back. I mentioned it a few times that I needed to do something about my back. I would do sit-ups, squats, and lunges. I mentioned the back ache a few times to my husband, but he shrugged it off.

I went on with my life.  The pain ebbed and flowed with my cycle.  Since it was regular monthly visitor, I assumed it was cramps, or ovulation.  This month, I decided that I needed to go in, and get some piece of mind regarding my body.  I am nearing 40, youth is fleeting.  I thought running made me immune.

I was wrong.  In 2002, I was in a train accident which affected my upper respiratory system.  I had switched insurances, and made my first appointment in almost six years.  The doctor being diligent ordered a chest x-Ray.  They found something.

I had a pleural effusion, or liquid on the lungs.  I was sent to the ER.  Three CT scans later, I was transported to the region medical center.  My kidney is being cut off by a large mass in my pelvis. Near my cervix.

The first thought, cervical cancer– with fluid on the lungs– I was probably stage 3 or 4.  This plunged me into the cardiac ward where I rode a roller coaster.

First, my lungs were drained and then the fluid was sent off to be tested. Then a revolving door of doctors and specialists came to see me: I had cancer, I didn’t have cancer, there is a mass, there is no mass, I need a stent, I don’t need a stent.

I am now day five into this whole thing, and this is the best guess: my kidney was blocked by something in my pelvis. The something is either a cancerous ovarian tumor, fibroid tumor, or endometriosis. My guess- endometriosis (my history points towards it).  I had a stent installed and biopsy on the mass.  I am waiting on the final word.  Then I face chemo, radiation, and/or hysterectomy.  I am facing this with humor and positivity- I am young, healthy, and have a great support.

The biggest thing that I came away with is a few life lessons:

1. Make peace with those you wronged. Don’t go out with regrets.
2. Be an advocate for yourself.
3. Don’t think that you are doing everything “right” that you are immune.
4. Don’t put off, or skip annual exams.
5. Be thankful for what you have.
6. Don’t share medical diagnosis until you have the final word.
7. Stay or get healthy– my activity and diet probably saved my life.
8. If you do end up in my situation up your data plan.

 

 

 

Liar Liar…

Today I discovered that a family member has been lying.  It was not one of those little lies that sometimes pop out of peoples’ mouths, and they immediately regret saying them.  It was not a harmless lie when your husband tells you you look great, but you really don’t.  This is a huge lie, a lie that could potentially ruin lives.  Sadly, it’s also the type of lie if I tell the truth, I could potentially ruin someone’s life.  It’s the most dangerous type of lie, a lie that could possibly destroy a life.

You see I am cut off from a family member.  The family member elected to cut off our family for two sad reasons.  The first was she asked me for money in a time of need for her son, and I didn’t have the money to give to her.  My husband was deployed, and we were paying quite a bit of money out of our own pocket for our son’s therapy and a special diet.  I was not able to go back to work, and it was overall a tough situation.  The worst part of it is I didn’t want to give her the money, even if I had it.  She would tell me the real reason she needed the money, and the reason she gave made no sense to me.  Further, she had gone to several other family members asking for money, and all the family members had turned her down as well.  She was getting more and more frustrated.  In her frustration, she posted a story online about her life.  In the story, she blamed my husband for all of her problems.  If he hadn’t been born, her life would be better.  I unfriended her on Facebook, and blocked her.  I know the sorted history, and this was not what happened.  Doing this cut me off from two people I care deeply about, my niece and nephew.

Throughout the years, I googled her and her children just to see how they were doing.  I would visit her page maybe one, or two times a month.  She is living in squalor and very poor.  When her washer and dryer broke, she opened a GoFundMe page, and I donated her some spare money anonymously.  When she didn’t have gas to fill in her car, I sent her money, again anonymously.  I didn’t tell my husband this, I did it because I hope the best for her.  Then a few days ago, I read a blog post made by her, and I am floored.

She posted the “full story” about what happened during her troubled childhood.  I won’t bother posting it here, because it is such a horrible thing that I won’t even give her the satisfaction that I know that this post exists.  I realized that she had done some very specific things to “snow” people into feeling sorry for her.  It has taken every ounce of my self control to not write to her, and threaten legal action if she doesn’t take down the post, or at least correct the falsehoods.  It is truly that bad.  She spoke of things that were done to her as a child, that never happened, but more over she was not the victim, she was the person committing the crime.  Yes, what I am speaking of is a legal matter, and she was found guilty by a court of law.  Her record is sealed forever.  And people believe her story.  She is called a brave person, a strong person, and a hero.  She is not one of these things.  She is a pathological liar.

How is she getting away with it?  Well, for one thing she is incredibly intelligent.  A few years after she established a Facebook account, she changed her name legally, because a few of the victims of the crimes she committed found her.  She was not smart enough to keep her mouth shut, and she confided me about her new legal name.  The second thing she did was she had a doctor diagnose her with a difficult to prove medical diagnosis.  The hallmark of the diagnosis is the perception of lying.  With the diagnosis, anyone who calls her a liar, she can knowingly dodge the accusation by claiming this medical condition.  So if I were to take legal action against her for the lies she is spreading, I have no legal leg to stand on, as she is diagnosed with this condition, and as far as she is concerned the lies are the truth.  She posts these diatribes on websites with like minded individuals, and if I were to go on there and call her out, the people who have read her truth could only attack me.

So why care?  Well, many of the people reading her posts are victims of the crimes she has committed.  She is participating in a predatory behavior.  I’m afraid that she may start asking the posters for money, or worse yet, give out the names of her “victims” to re-victimize them again.  She has no qualms about ruining lives, she had called, and gotten someone fired based on an exaggerated lie.  My fear is that she has found a way to ruin her victims’ lives again.  And it appears I have no recourse.  So I sit here, and watch, and wait to see what happens next.