Friday, November 18, 2011

Slumber Parties

Back when Vanessa and I were kids, we would always spend the night at each others house.  We stayed up late talking, and just being high school girls. Slumber parties continued on into our adult lives, and although very much the same as they were when we were kids, they changed drastically.

 Vanessa has always needed someone to stay in the hospital with her.  She does not do well alone.  Most of the time Matt would stay with her.  Matt is a pilot for indirect fire fighting.  During the fire season, he was gone a lot and unable to stay wither.  Her mom, her sister, her dad, and made sure we had all nights covered with her.

 On good nights, Vanessa and I could stay up pretty late and talk, and watch movies, and play the wii.  On bad nights the slumber parties changed.  Bad nights consisted of extreme pain, fear, nausea, vomiting, coughing, and fevers.  Spending the night was no longer like high school.  Spending the night was about being quick, knowing what was wrong with her and what to do to help her. 

 If she was in pain, then I would rub her back and her feet and soon be paging the nurse for pain meds.  If the nausea came on, it was about reaching for her barf bucket quickly and rub her back while she vomited. After she was done vomiting she needed to be handed tissues to wipe her mouth and her tears.  Then it was important to empty and clean the barf bucket ASAP.

  Now, when Vanessa was sick with mucousitits, then vomiting was even more extreme.  Mucousitis is a side effect of Chemo and Radiation treatments.  It causes inflammation and ulceration of the mucous membranes lining the digestive tract.  When mucousistis was going on, vomiting was difficult.  Vanessa would vomit a lot of flem and would gag even more as it was coming up.  These were some of the hardest times during her treatment that I remember.  I would rub her back and encourage her to continue to get up as much flem as possible.  When she was finished it helped her to now how much flem actually came up.  So I would no joke sift through the vomit to count the loogies.  Coughing was a large result of mucositis and it would happen frequently as it was her body’s natural reaction to discard the flem.  Fevers were always scary and led to panic.

  Fevers were of course a sign of infection, or worse a sign of Cancer spreading. Even if Vanessa was not admitted to the hospital she carried a thermometer almost everywhere she went and she slept with one.  She had one that lit up the screen nice so that at night she could just lay in bed in the dark and take her temperature.  In the hospital I remember one night we were both actually sleeping really good.  It was starting out to be a good night.  All of the sudden Vanessa woke up moaning and starting to panic.  She said she thought had a fever.  I reached over and felt her forehead… burning up. So my next move was to grab the thermometer and page for the nurse.  Her temperature had read 102.  The next step for the nurse was to start lab work to see why she had such a high fever, and give her medications to bring the fever down.  The next morning Dr. Parker came in and said she had an infection and started a round of antibiotics.  Thank goodness.. 

 All of the above problems usually led to fear and panic.  This was one of the hardest things to watch Vanessa go through.  Really there is not a lot you can say.  You can’t really say “it’s alright” because fact of the matter is that things are not alright.  Things suck, and things are scary.  To calm her down I would always work with her on breathing first.  Deep breath in through the nose and out through the mouth.  Once deep breathing starting calming her, I would again rub her back and her feet until she was calm and comfortable.  I would get her comfortable in bed again, and then lay back down myself, and rest until the next round came.

Wednesday, November 16, 2011

An Epidemic

Before Vanessa's diagnoses, Cancer was something I heard about all the time on the news, but really knew nothing about or how many it actually affected.  It was crazy, within months of her diagnosis I learned of so many more cases, from people I actually knew.

Ron Reed, my engineer from the Fire Department.  He came to work one morning and went to use the rest room.  He came out and told the captain he had just pissed blood. Dave told him to leave work right away and go to the doctor.  Dave told Ron this happened to someone in his family, and it turned out to be cancer.  Ron went to see the doctor and sure enough, it was Cancer.  Ron was diagnosed with Renal Cell Carcinoma and givin a prognosis of five years to live.  Ron faught a hard battle, and passed away this current year in 2011.

Then I learned of an old friend from high school, Sandra Gronley.  Sandra had a husband diagnosed with Hodgkins Lymphoma, and then shortly after... her daughter of only 5 years of age was diagnosed with Leukemia.  I mean... WTF.... two people in her family.. are you freakin kidding me?  Now this case has baffled me and is on my mind a lot.  Lymphoma and Leukemia are very tightly linked Cancers.  As far as Cancer goes, Lymphoma and Leukemia could be sisters.  So yeah, I am curious, what caused the Cancer in Sandra's husband, and in her daughter?  There has to be something genetic, there must be something that would be detectible to know if the gene is running in a family... what is the link?  How do we stop this from happening?  Today I am happy to say that Sandra's husband continues to be Cancer free after his battle, and her daughter is also Cancer free!  Thank you God!

After shaving my head I met yet another person.  I was working one night at the Country Club.  I was taking care of Mr. and Mrs. Kenny.  Mrs.  Kenny noticed my bald head with a scarf around it, and a lime green ribbon pinned to my appron.  She asked why I wore the ribbon.  I explained Vanessa to her, and then she told me that she herself was fighting Cancer.  Mrs. Kenny was also a patient at City of Hope.  Over the months to come Mrs. Kenny gave me more knowledge and advice then any one could ever know.  She donated several wigs and hats to Vanessa and always asked me about Vanessa's current condition.  Mrs. Kenny had faught Cervical Cancer.  She is now a survivor! 

Mrs. Weston. She was also a member of the Country Club, and was diagnosed with Breast Cancer, she also went through a very hard fight.  Mrs. Weston loved the fact that I shaved my head, and we soon became close sharing all the details of Cancer with each other.  I am also proud to say that Mrs. Weston is a Cancer Survior.

Winni Strut, also a member of the Country Club.  Winni and her husband Dave were members I was already close with because of my friend and co-worker Rowena.  Winni has been fighting lung cancer for many many years.  She is a beautiful woman with a beautiful heart.  Again, so supportive of me shaving my head.  She also donated some hats to both Vanessa and I.  Today, Winni continues to fight Cancer.

Sandy Watson, my long time neighbor of mine and also member of the Country Club.  I just learned of her diagnosis with Lung Cancer and have yet to fallow up.

Another high school class mate, Tory Ward.  Tory was diagnosed with  Primary Angionsarcoma of the Breast Cancer this year of 2011.   From what I have learned from fallowing her posts on Facebook, is that she is one strong girl, and I know she will beat this Cancer!

Jennifer Dunlop:  I met Jenny before Vanessa was diagnosed. I did not know Jenny during her battle of Cancer. However today, she still has labs drawn to make sure she is clear.  Jenny is a survivor of stage 4 Melenoma Skin Cancer. 

Chrissie Riley, Jennifers Sister had been diagnoes with Colon Cancer.  Again, is there somehow a link?  Two different Cancers, but Cancer is Cancer.  Two sisters, each affected by Cancer... what is the link here?  Chrissie is also a survior today of Cancer.

An old friend of mine, Robyn Thomas.  Her Grandmother was diagnoes with Colon Cancer.  Today she is also in remission.

Frannie Tassone, a member from the country club.  For many years I baby sat the Frannie and Stephen's children while they would visit the mountain.  There was one year that I had not seen the Tassone family in several months.  It was unlike this family to not be in the mountains during the golf season.  I later learned Frannie had been Diagnosed with rectal Cancer.  Today, she is a survivor.

So I know 13 people who are either fighting Cancer, have faught Cancer, or have passed away from Cancer.  I feel like 13 is an awfully high number... Do you know 13 people with Cancer?  Knowing 13 people who have had to go through this terrible disease is way too many.  This is truly an epidemic. 

Check out this Link to the American caner Society.  The data shows how many people in the United States alone were living with Cancer in the year 2008.  The numbers are shocking.  So What do we do to prevent this.  How do we stop Cancer from taking over.  Surely there must be a way, and part of it starts in the way we live.

Tuesday, November 8, 2011

Finding Hope

After being at Arrowhead Regional and in the dark for so many months, Vanessa decided she deserved better, and went on the search for new treatment.  She got hold of her medical records and set up a consultation at City of Hope.  She asked me if I could go with her that day to meet with the Doctor and of course I accompanied her. 

 This was a very important day for Vanessa, a day of Hope for something more.  Hope to survive, and Hope to beat the Cancer.  Vanessa found the attitude she needed to survive, and it was largely based on hope.  So what better of a place to get treatment than City of Hope?  One of the most amazing Cancer centers in the country.  This isn’t just a hospital that specializes in anything and everything, its main focus is Cancer.  They also focus on T.B. and AIDS, and Diabetes.  Vanessa got all dressed up, did her make up, and rocked a shiny bald head.  I also dressed up.  Vanessa and I decided we needed to show the Doctor that we were serious about wanting better treatment, that we weren’t just some young kids coming in and wasting time, we wanted to beat this.  I also decided to rock my bald head with her that day.  I wanted everyone to know she had a strong support group.  I wanted the Doctor to know, I was going through it with her, she wasn’t alone.

Just upon arrival, we were blown away at the size of the facility.  HUGE and beautiful! Just driving onto the campus gave us both a surge of excitement and Hope.  This is where Vanessa needed to be, this place was for her.  We parked the car and walked to the main entrance of the Hospital.  A beautiful fountain placed out front where we took our first pictures together of finally finding Hope.  I can always see the photos in my mind, I don’t even need to see them.  Vanessa looked so happy, and relieved to finally be somewhere better.  We walked inside and got her file with directions on places we needed to go.  This place was huge, and pretty confusing to find our way, but we made it through on the hoops and jumps and finally were waiting to meet with the Doctor.

One thing I will never forget about that day was how many people complemented Vanessa.  Other Cancer patients, and workers, and even guests.  She was told over and over again how beautiful she was.  And she was beautiful that day.  She was honestly glowing that day, more then I think I have ever seen in the past.  She literally looked like an Angel that day.  The more she was complimented, the more she became confident, and Hopeful.  It was obvious she belonged here.

Finally we were brought back to meet with the consulting Doctor.  Dr. Pablo Parker.  We sat in his office anxiously waiting for him to come in.  I brought a pen and a notepad with me because I wanted to take notes.  I was Hoping we could gain some answers this day, and I didn’t want to miss a single word he had to say.  I also had a list of my own questions, and questions Vanessa needed help remembering. 

 Dr. Parker came into the room and shut the door.  He looked at the both of us and asked “Which one of you is the patient requesting this consult?”  Vanessa raised her hand and smiled and said it was her.  Then he looked at me and asked “What type of Cancer do you have?”  I said “I don’t, I let Vanessa shave my head when she lost her hair, it helped her feel more confident to know I would go through it with her.”  He smiled and understood it was for sympathy and support. He went over Vanessa’s files and then began to speak with us. The first thing out of his mouth was “It looks like you are getting the right treatment so that is good”.  I got scared that he would turn her away because she getting the right chemo treatment so I decided to interject.  I said “She might be getting the right Chemo, but that is all she is getting.  We know nothing about this cancer, what stage she is in, how bad it is, we don’t know what effects the chemo have done to the cancer, we know nothing, we are in the dark”.  Dr. Parker saw my frustration and went over her information with us.

 Vanessa was in Stage 2E… Stage 2 with an Extension to the left lung.  He then also told us that it turned out the tumor had shrank considerably, that it was almost gone and she was well on her way to remission.  That’s right REMISSION!  The word everyone Hopes to hear while fighting Cancer. 

 Vanessa spoke of how much she needed something more then what Arrowhead Regional could offer her, and we both continued to ask questions, and I continued to take notes.  It was such an amazing experience to finally learn something about the Cancer and what was going on with her.  It felt like the weight of the world came off my shoulders and Vanessa also. 

 Finally at the end of the consult Dr. Parker said he would be happy to be Vanessa’s doctor.  He explained to her how the system worked at City of Hope and that he wouldn’t always be able to come and see her for as long as he had with us on that.  He explained doing clinic and that most of the time those appointments were short, but that he would always be happy to explain what was going on.

 Finally we were done, and Vanessa had more Hope then ever.  She was now a patient at one of the countries most respected Cancer centers.  She would now know everything, and she now had the Hope to beat this thing.  We set up her next appointments and then we headed for the car.  It was a long walk, and we both had heals on.  Heals on tired feet.  We both could hardly walk any more.  So when we got to the front of the hospital, we took a couple wheel chairs and wheeled ourselves to the car.. It was a workout on the arms for sure, but the feet needed the break, and it was fun.  It was nice to have some fun. 

We got in the car and headed out for a dinner celebration.  I treated Vanessa to a nice dinner and a couple drinks at the Yard House.  We called her mom and shared the wonderful news that Vanessa was a patient at City of Hope, and the best news of all… she was well on her way to REMISSION!!!!

This was an amazing day.  I will never forget this day, and I will never be ungrateful to Dr. Parker.  He was so kind and I fell in love with him that day.  Dr. Parker is what Vanessa needed.  I mean he was an excellent man.  He provided us with Hope.  What more could we ask for?

"The Attitude"

Having a positive attitude took time to find.  Of course when first being diagnosed Vanessa was scared and angry.  She had the same question as everyone else.  “Why me?”

I remember one day particular in the beginning of treatment.  Vanessa was struggling with understanding why she had Cancer, and how long she would live.  She was certain at the time that it was unbeatable.

 I spoke with Ness on the phone early one morning.  She was in a bad mood and she didn’t want to eat.  She said she had no appetite and it didn’t matter any ways because she was just going to die.  I told her to knock that crap off right then and there and that she had to eat.  I offered to come over and cook for her and she didn’t want that.  I mentioned picking up breakfast from the Belgian Waffle Works.  That perked up her mood and she said “ok I could probably eat some of that.  I went and got her a Strawberry Royale Belgian Waffle and also brought her a book; The Last Lecture. 

 She enjoyed her breakfast, she didn’t eat it all, but she ate that was important.  She smiled and was happy to have some good breakfast.  I pulled out the book and gave it to her.  For those of you who have not read it, it is about a man who was diagnosed terminal.  His last lecture to his students it what he turned his book into.  He had a wonderful story and a positive attitude.  Although Cancer did take him in the end, he learned and left a lecture for others to learn from, to help others, and to help his family with his loss. Truly an amazing story.

 So if you still have a bitter attitude about your diagnoses with Cancer, it is ok.  The right attitude will come in time.  Even when the right attitude comes, the bitter one will show through… it happens, it’s normal and it’s perfectly ok.  It’s ok to ask “Why?” and it’s ok to get upset.  But also understand you are special.  You will learn and change so much from this disease, and because of it, your life will become better, you will live to the fullest, and appreciate everything you have had before this Cancer, and the blessings to come.  Finding the right attitude, the attitude to survive will come!

Saturday, November 5, 2011

"Quality Care"

Vanessa’s time at Arrowhead Regional was a joke.  It was anything but what their mission statement states:  To provide quality care to the community.  Well Vanessa was a part of the community, and Vanessa received anything but quality care.

 We never spoke to an Oncologist. How do you get diagnosed with Cancer, your sent to a hospital that is supposed to take care of you, and there is no one to answer your questions.  Every day an Internal Medicine Doctor came in to check on her.  Vanessa of course had questions, and he of course did not have the answers.  His answer always was “Let me speak with the Oncologist and I will get back to you”.  After never seeing an Oncologist or speaking to one I honestly started to wonder if one was even employed at that hospital.

 Vanessa was getting treatment, she was getting chemo.  They were giving the right chemo treatment for her Cancer.   For months, she got chemo and came in for treatments but we never knew any progress.  It seemed like every time Vanessa walked into that place for treatment, she walked into the dark.. In fact I have a hard time remembering a lot that happened there because no one ever knew anything.. there really is not much to remember other then the lack of care, and communication.

 However there is one even I really remember.  Matt was spending the night with Vanessa as he usually did.  She was having a hard night so Matt got in bed to snuggle with her and comfort her.  Any time a Nurse or anyone came into the room Matt would get out of the bed so that the staff had full access to Vanessa to take care of her.  None of the nurses ever had a problem with this until one night nurse came in for her shift.  She came into the room and so distraught that Matt was in the bed, but he did get out of the bed so she could work on Ness, and she told him that it is policy he cannot be in the bed with her.  Well, Vanessa needed Matt next to her that night, so he climbed back in with her.  Then the nurse came again and yelled at them both telling them they cannot share a bed because they might be “fooling around” and this was not a place for that.  Vanessa explained to the nurse they were not doing anything other then snuggling as she felt sick and just needed some comfort from the man she loved.  The nurse called Security on Vanessa and had her kicked out of the hospital for simply wanting some comfort from her boy friend.

 Why on earth would anyone care if she had the arms of love wrapped around her?  Come on, she was scared, sick, and needed some comfort… needed to feel safe.  In my opinion this hospital broke their mission statement of “quality care” in many ways.  Never speaking with an Oncologist, never having questions answered, never knowing anything about her progress, and then being kicked out for trying to be comforted by the one you love… despicable if you ask me.