How Do You Thank Someone For Saving Your Life?

I finished chemo yesterday.  I looked back on the last six months since this entire adventure started, and the only thing I thought of is, how the hell do I think the people involved with saving my life.  Catching this cancer in the earlier stages (though I was stage iv, it was caught very early as in retrospect my symptoms were minor), and I am still here today because of the doctors, nurses, and my friends and family, who were a constant support.  I guess the best way to do it is to write an open letter to those who were involved in my treatment.

Dear Staff at Sacred Heart,

I don’t know if you realize this, but you saved my life.  You do it every day, and I wanted to acknowledge some of you individually.  There is really nothing I can do, give, or say that will express how much I appreciate and truly love you for what you did for me.  So where do I start:

I would like to thank the ER resident OB, who had absolutely no experience in a 40-year-old woman, with no symptoms dumped in your lap that night.  Who through tears told you that another radiologist you never met that I had a mass, but you couldn’t feel the mass, so you sent me up to a hospital room.

Tommy, the nurse, who appreciated my jokes about drinking that frozen concoction with tequila.  I don’t know if you like it on the rocks.  I really want to bring you a bottle, but I don’t want to get you in trouble…  You have no idea how much your humor, your honesty, and how much fun you were during this incredibly rough time.

To Dr. Parra– I am so proud of you for finishing the half marathon.  Thank-you for your solid advice and talks about autism, the Air Force, and for praying for my family.  I really, really appreciate your expertise and how much we had in common.  I’m so glad to have met you.  Thanks for taking the stint out so I can run :).

Unfortunately, I do not remember the name of the other night nurse in oncology, who finally relieved me from the pain of 12 hours of dry heaving, by giving me something to finally puke.  You held my hand while vomited and sobbed.  You broke my Seinfeld-esque vomit free streak.  You’ll be happy to know that I never vomited during chemo :).  I came close.

Onto Oncology, and Gynecological Oncology…  There are no words, no prayers, no nothing I can say to Dr Stephen DeCeasare.  I cannot thank-you, or give you credit, or scream it from the rooftop on how wonderful you have been.  You will always be the one who saved my life.  I know having served in the military, we hold those that save lives in the highest regard.  You are a hero to me, and to my family.  We will not forget your bedside manner, your kindness, and your tireless work for your patients.  Thank-you so very much.

To Becky, Dr. DeCeasare’s nurse.  Thank-you for being his support and mine, and for answering every question.  Nurses are the backbone to care, and you are truly appreciated.I really cannot thank-you enough for your helping me with my crazy schedule.

To Karla, Jeanette, and everyone else in the oncology infusion room.  You women are the heart and soul of treatment.I truly love everyone in the infusion.  Especially Karla, who I got to know in the last 16 weeks.  Thanks for being there and being a constant support.  I appreciate your advice, and followed it to the letter (most of the time).  Thank-you for reminding me to complain when I feel yucky and not to suffer in too much silence :).  Thanks for holding my hand the first infusion when I was so terrified I could barely move.

I can’t thank anyone involved in my cancer treatment enough.  You have touched me, and changed me forever.  I love you all, and will keep you in my prayers forever.  You have saved my life…  As far as I am concerned, there are not enough military medals, accolades, recognition I can give you!

I Wear Athletic Wear To Chemo And Other Crazy Things I Do…

I have done some pretty crazy things the last several weeks since I was diagnosed with cancer.  Here are a few of them:

I wear running clothes to chemotherapy.  And when I am not wearing the same clothes I would wear running a marathon, I go out and buy “chemotherapy” outfits.  So far I have bought three new outfits that I have only worn to chemo.  And I have purchased scarves and headgear to match.

I let my daughter shave my head.  That’s right, I handed a razor over to a 10-year-old and said, “Have fun…”

I bring my laptop and a puzzle book to chemo with every intention to work on my novel.  I have not done one puzzle, nor have I written one word on the novel since December.  I sit there for 5 hours, talk to other cancer patients, talk to whoever has rode with me, or I binge watch “Law And Order Special Victims Unit” on USA Network.

I have started running again.  I announced on my Caring Bridge Site that I was running, and got a slew of texts, and calls telling me that I was insane for running, and running outside at that.  In my defense, my doctor is fully supportive, and he said that he wants me running.  I would never do anything to jeopardize my health or recovery.

I plan on getting a tattoo and piercings after I am done with chemo.  I actually plan on getting a teal butterfly tattoo somewhere on my body.  I want to commemorate what I have survived, and I also am thinking about getting my nose pierced.  I don’t really care that I’m 40, and it may seem hipster-ish.

I have contemplated doing crazy clean eating diet, but opted for chocolate, jellybeans, and Fritos.  I was going to do a green smoothie diet, with fresh organic vegetables, and lots of fruits.  Unfortunately, I am allergic to bananas.  (Sorry TMI) Pineapples give me the runs.  And the only thing that really stays down are bagels, cream cheese, chocolate, jellybeans, and Fritos.

 

What Does Cancer And Treatment Really Feel Like?

I was asked one day by one of my family members what does cancer feel like?  Do I feel like I am dying?  Does it hurt?  What does chemotherapy feel like?  Will you know if you have cancer?  Here are 10 things I feel during treatment, just to enlighten everyone on what this journey actually feels like:

  1. The only pain I have experienced so far as a direct result of cancer is from my pleural effusion, which is fluid in my lung cavity (it’s not directly on my lung).  It’s not really “pain” per say.  It’s kind of discomfort.  I can feel something on the inside pushing against my rib cage.  Other than that, there were NO other symptoms, and this “pain” only just showed up after my second effusion, after surgery before chemo.
  2. Chemotherapy infusions themselves, doesn’t really hurt either.  It’s not without some discomfort though.  I find I get a little nauseated during the treatment, and I can taste the drugs that are infused, so I try to eat during my pre-drugs, because there isn’t nearly the bad taste or bad smell.  And normally after chemotherapy, I feel an internal burning sensation.  I liken it to heartburn only it’s in my abdomen.
  3. Chemotherapy is not like it is on television or the movies.  I do not spend days puking.  Basically, I take anti-nausea medications the day of, and three days after chemo.  I am able to eat somewhat normally– I just eat smaller meals.  I sleep a LOT, and I feel like I have the flu on day 2 and 3 after infusions.  This just means I have lots of body aches, am lethargic, and don’t really feel like being around people.
  4. Even though, I could have lost my hair, I am not completely bald.  I shaved it as a precaution.  My hair is thinner, but it is growing.  Same with my body hair.  I cannot get waxed, I cannot shave with a razor, but I can use Nair.  I avoid using it, because it burns me.
  5. Before I was diagnosed, deep down I knew that there was something amiss, but I could not put a finger on it.  The only symptoms I had before diagnosis were easily explained by something else.  I was tired, absolutely exhausted for no reason.  I figured it was stress.  I was hormonal.  I figured I was turning 40, because I had some hormone issues, I was pre-menopausal, or I was depressed from the recent death of my father.
  6. The sickest I felt so far was after I had the hysterectomy.  I was in a LOT of pain, I was suddenly rendered into menopause, and I was scared that the cancer was only going to get worse.  I did recover from the surgery.  If you take the side effects from treatment away, I feel more, or less, like I did prior to cancer with one minor exception.  The cancer grew into the uterer (the tube between the kidney and bladder), and I am in Stage One Renal failure.  I have stent placed, and that makes urination painful if I don’t drink enough water, or move around too much.  That will be removed in early April, and I can resume my normal activity.
  7. I did experience the grief cycle, sometimes I experience every step in the grief cycle in one day (LOL).  Right now, I am in the acceptance stage, but I find myself a lot of time in the angry stage.  I am angry at myself, angry that it had to be me, and a little resentful when I see people making bad choices and not suffering for them.  Then I feel guilty about the anger.
  8. Even though cancer is a bad thing, I see it as a good thing, too.  I have learned A LOT about myself, and how much I can endure.  It has really heightened my faith.  For a time I was agnostic Catholic, but I find myself believing more and more.  I have seen and experienced things that would make some of the most ardent questioners say, “OK, God, I get it, you are here.”  One of the things that was beyond my comprehension is while I was getting my surgery, I saw my dad.  He told me that everything was going to be OK.  Nurses and doctors have told me that people do NOT dream in surgery, and this is highly uncommon.  My doctor even said, “if your dad said it, then I believe you will be OK.”
  9. Also prayer works…  I am on all kinds of prayer lists for just about every Christian denomination, and on a prayer list in a Mosque and Jewish Temple.  You would be amazed that you feel those prayers.
  10. There have been some positive symptoms of cancer/chemotherapy/menopause.  Since the organs that I have caused PCOS were removed, I am now down to my goal weight.  My blood sugar is for the most part regulated (though after treatment I will be on a low-dose insulin the rest of my life).  Symptoms of ADD/Aspergers have been lessened as well.  I don’t have the compulsion to move like I did prior (and this could be the exhaustion/malaise from chemo).  I am also more focused, and can complete tasks that require some concentration.  I was going to go on ritalin, but right now the doctor says no.  I sleep better, and some of the depressive symptoms associated with ADD are gone.  Hopefully the good symptoms stick around a little bit longer.

This is what my cancer feels like.  The cancer experience is different for everyone, and just because I had no symptoms doesn’t mean someone else will feel the same way.  It is still can be a little bit terrifying, but for the most part it has been surreal.  I look forward to being done with treatment and moving on with my life.

Thoughts On Being 40…

IMG_0553

Forty is a milestone birthday.  I vividly remember my mom’s 40th birthday.  I was 8-years-old.  My dad threw a huge surprise party for her.  My uncle and aunt had traveled “up north” from St. Louis.  My dad hired a singing telegram, my mom got several hundred gag gifts, including an anatomically correct puppet with a finger hole for the male part of his anatomy.  You put your hand in his butt, my mom quickly hid all the gifts before I could ask innocent questions about stuffing your hand up a puppet’s ass.  I moved away after my brother’s 40th, I sent my brother-in-law underlined copies of “Fifty Shades of Gray,” and I threw my husband a huge party (his usually lands around Superbowl and during Mardi Gras).

My 40th is a little bit lower key.  The only gift I care about receiving is the fact that my life has been spared (so far).  I went to lunch with my husband and had a glass of wine.  That’s about all I feel up for.  Other than that, there is nothing extraordinary going on here.  The kids are playing in the pool, my husband has a three hour rehearsal, and I’m worn out.  One of the squadron members is bringing dinner by, and I don’t think they are aware of the significance of the day, they just volunteered to cook for us (I am thankful, most days I don’t feel up to cooking).  There won’t be cake, or cupcakes this year.  The picture above are of the cupcakes from my dad’s birthday a few months ago.  I don’t feel much like celebrating.  My life has been on perpetual hold.

It kind of makes me sad.  Things are planned around chemo infusions and doctor’s appointments.  Dinner’s out are planned on scheduled “good days.”  Good days are defined by my ability to stave off fatigue for a few hours longer (usually I am about done around 4:00 PM), whether I will have nausea (1-3 days post-infusion), and what symptoms I am currently experiencing.  Sadly, I am sicker seeking treatment, then I ever was before seeking treatment.  It’s as if God snapped a finger, and my life changed.

If I hadn’t been diagnosed with cancer, we would have had a party, surrounded by friends and family.  I would have had a birthday cake, and opened a bunch of gifts from my husband and kids. Today is just another day in the 15 weeks in the fight for my life.

 

Bald Is Brave

1623381_1720008094884447_5887443050884410403_n

When you have cancer there is not much in your control anymore.  It is especially frustrating when the treatments make you sicker than the disease. I had no symptoms before my diagnosis (in retrospect I had a few symptoms, but they were not anything that I couldn’t be explained by other conditions).  I have completely recovered from the surgery 6 weeks ago– with the annoying exception of the effects of my bladder/kidney stent.  I was by the doctor that under no uncertain terms that I would be losing my hair– the degree of hair loss is not certain.  I could maybe keep some of my hair, and have it thin, or I could be completely bald.

On the 12th, my first strands of hair came out.  There were a few strands on the pillow, and a few strands while I was washing my head.  I decided that my hair was something that I would control.  I wanted to take one thing in my life/health back.  My hair was the one thing I could control.  One Saturday night we had a little party in my bathroom.  My daughter did the honors.  I think she had a little bit too much fun shaving my head.  I think it was her little bit of revenge.  What daughter wouldn’t want to get back at their mother by shaving her head.

I thought I would cry through it, but I laughed.  I honestly had fun during the hair cut.  I felt free.  It was the first time in the last two months where I felt free and strong.  I posted the picture on my Facebook, and instead of getting comments confirming that I looked sick– like a cancer patient. I heard compliments like– “you look beautiful,” “you look fierce,” and “you look strong.”  I expected pitying looks when I went shopping, and there was none of that.  I feel so empowered, so strong, and I feel brave.  I am one step closer to getting my health back.

Two Treatments Down, Sixteen More To Go

Well, I am still alive and kicking.  The last two months have been a whirlwind.  The beginning of the New Year, I was preparing to train for Grandma’s marathon.  Starting to get ready for the half marathon I had in the middle of February, and was just going to multiple appointments getting my daughter diagnosed with ADD.  Fast forward to the first week of February, I now have cancer.  I had a 7-hour major surgery were cancer was removed from just about every organ in my abdomen, and I was starting chemotherapy.  Never in a million years, did I imagine that I would have been diagnosed with cancer, and never during the recovery of the surgery did I realize how quickly I would recover and how quickly chemotherapy would knock me out.

Now, I am two weeks into an 18-week treatment protocol.  The first week of chemo, the doctor delivered the surprisingly good news that I had survived the worst of it, and that I was probably going to be OK.  I didn’t feel OK.  I was achy, tired, and bordering between nauseous and starving.  Two weeks later, more side effects are starting to come out.  Last night I noticed that I have NO taste.  I cannot taste anything unless it is strong.  My tongue is completely numb.  Yesterday, a clump of hair fell out while I was in the shower.  I realize that this journey is going to be a fun one…  However, each day I wake up, and feel strong enough to write, go for a walk, or watch endless episodes of my favorite shows is a good day.  I hope to be back blogging soon, or working on my novel, or doing something other than thinking about cancer.  Please keep me in your thoughts and prayers!

Cyber Bullied For Having Cancer

I was officially diagnosed with Stage 4 Ovarian Cancer on February 3rd, 2016.  As scary as the diagnosis sounds, and I am truly terrified, I am going to write about this as a warning to other social media users.  Please note, I do not think negatively about this, it is bothersome to me, but I am not dwelling on what happened, and I am a strong, healthy person, and I am going to beat this despite the “haters.”  I just namely want to save people from experiencing a similar thing.

A few months ago, I was invited to a running social media site.  I will not name the site, as it will give credence to the members, that did the bullying.  It was a site that encouraged its members to be sarcastic and irreverent.  I enjoyed it.  It was a closed group, so I felt free to post about things going on in my life that I could not post on regular social media sites.  At the time, I was dealing with the recent death of my dad; my daughter was being diagnosed with ADD (and had some serious mental health issues going on); and of course my son had autism.  I was struggling mentally and physically from all these things going on (or so I thought).

On February 1st, I had an appointment with my doctor.  This was my initial appointment, and because I was in a chemical accident in 2002, she ordered an X-ray of my chest and upper respiratory system. I ended up having fluid on my lungs.  My heart rate was irregular and my blood pressure was high.  The doctor told me that it probably was pneumonia, and my heart was enlarged because I have a condition that’s common in marathoners called athlete’s heart, OR I could have congestive heart failure and I could have had a silent heart attack.  I rushed to social media, and asked questions from the runners on the site.  Most of the runners answered honestly, but two women started to question everything.  I tried to answer the questions and calm myself down, but no avail.  My day was about to get much worse.

I was sent to the ER at the local hospital to have the fluid drained.  They did a CT scan to see the extent of the fluid in the lungs, and the radiologist saw something on the scan.  Three scans later, he spotted a mass in my gynecological region, and they ambulated me to Sacred Heart in Pensacola.  Of course, being the person I was, I updated those praying for me in the running group, because I had friends there.  The two women who had questioned me got even more aggressive, and started to really question the situation.

The next three days while I was hospitalized, it was a roller coaster.  I was told that I did not have cancer, that I did have cancer, that it could be this, or it could be that.  Finally, on February 3rd, I had a bladder stent put in, and was thoroughly examined by the gynecological oncologist on staff at the hospital.  He identified the cancer immediately.  I was scheduled on February 5th for a full hysterectomy.  I didn’t check social media account for a few days after that, and when I did check it, I found a post making fun of me.

It had gone beyond the two women who initially questioned my diagnosis, multiple people posted things stating that I was faking, that I was an attention whore, and they questioned whether, or not I was making up other things I had shared with them.  I was told by my family to leave the site, and I did.  A few of my Facebook friends that were on the site that I had left, and why.  Some of them went on the site (who knew me personally and online), assured the other admins that I was not lying, and that I was diagnosed with cancer and facing months of treatment.  The site exploded, and several people left the site, and started their own site.

I am not really too angry, or hold too many negative feelings towards the people who did this.  Online is a mob mentality sometimes– just look at some of the other irreverent sites that have hurt people in the past.  The commonality is they are irreverent.  If you can’t handle the heat, you are the one with the problem.  It is easy to be mean when you are hidden behind a computer.  In all honesty, their negativity, ribbing, or cruelty does not bother me.  I actually feel sorry for them, because there is something seriously lacking in their life that they feel they can pick on someone diagnosed with cancer.

I also hold myself somewhat accountable for what happened.  I should not have shared with strangers what was going on.  I should have just kept it to myself until I knew for sure what was happening.  I should not have kept feeding them with information to use against me.  The situation has changed the way I interact online.  If I have medical questions about my condition, I have found a support group locally, and I call people who have been there.  I also contact my doctor, I keep a negativity/symptom journal, and I have a cancer survivor social worker, who is working with my family.

Though this incredibly negative thing has happened, there has also been some good that has come out of this.  I am not a religious person, and I have a renewed faith.  I have personally witnessed miracles.  It has brought me closer to my family and friends, and made me realize how truly precious our time on Earth is.  I made up with a friend that I thought I had lost years ago, people I went to high school with have rallied around me, and I have become a better person.

I never really thought that online bullying could occur to me.  I am not a typical victim.  I have a pretty thick skin.  It can happen to anyone, for any reason.