"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.

Bald and Beautiful

It didn’t take long into the treatment’s for Vanessa’s hair to start falling out… we tried everything to prevent it from happening.  I had even researched chemo that doesn’t make you loose your hair… of course the chemo that doesn’t make you loose your hair was not an option for her.  It started with little strands falling out here and there.  As the days went on a few strands turned into handfuls.  We cut her hair shorter thinking if we kept the weight off of the root it wouldn’t fall out.  Its not the weight on the root that causes the loss.. the root is being damaged the chemo… it doesn’t matter if you only have peach fuzz on your head… it will fall out with most chemo drugs.

 Like any girl, loosing her hair was hard to deal with.  Hair is so important to any girl… its one of the aspects God gave us to make us beautiful.  Vanessa had one of the most beautiful heads of hair too… thick, shiny, and healthy as can be.. beautiful short or long… held styles, curly naturally and beautiful, and straightened just as beautiful. 

Vanessa’s hair started creating a “rat’s nest” on the side of her head.  She didn’t want to brush it because it would fall out even more.  Finally her boyfriend Matt came to her with some clippers and told her it was time.  He sat her down and he shaved her head, and then they shaved his head. 

 I had promised Vanessa that when she lost her hair, I would loose mine.  I wouldn’t make her go through that alone.  I wanted to support her and let her know it was ok to not have any hair.  My hair was long and I had never been happier with the color.  I was in a new relationship with my now Husband Mike.  I had told Mike I would shave my head for her.  I expected him to tell me no.  Honestly, what guy wants a bald girlfriend… one that he hasn’t even been with that long.  However, he supported me.  Of course he wanted me to keep my hair, but he 100% supported my loosing my hair for supporting my best friend.

 Vanessa became admitted for another round of Chemo.  I showed up in her hospital room on I believe June 16, 2008.  I brought a pair of clippers with me.  I had not yet seen Vanessa with a shaved head… and I was terrified to see what she and I would like bald.  I walked down the hall towards her room.  The door was open and she was talking with her Nurse and crying.  I was standing in the hall where I could see her, but she could not see me.  I was taken back by seeing her for the first time bald.  I needed to look at her and prepare myself so then when I approached her face to face wouldn’t look at her any differently then what I always had before.  It was hard to see her that way.  I will never forget seeing her bald for the first time.  This was the new Vanessa.  This is the Vanessa I would now know.  She did not look bad, or sick… in fact she looked beautiful.  But none the less one way I never wanted to see her.

 I finally pulled myself together and walked into her room.  She was still crying listening to the Nurse talk of her treatment and the plan.  She was scared and confused like any person would be.  After I sat down, I handed her the clippers and asked her if she was ready to shave her best friends head.  She smiled and got up right away and started setting up the clippers.  I went and I sat down in a chair in front of a mirror and pulled my long hair into a pony tail.  She had scissors in hand, and Matt had the camera in hand.   First she cut off the pony tail, and we took some silly pictures with my pony tail.  Then the real fun began.  She got the clippers, turned them on, and slowly started shaving my head. 

 The first bit of hair she shaved I relaxed.  I was no longer scared to loose my hair or frightend at what I might look like bald.  Just seeing Vanessa’s smile put me completely at ease.  It was fun.  One of the most fun times her and had ever shared.  We laughed and had so much fun shaving funny hair styles into my head before it was all gone.  I must say, I had one round head, and I did not look at all bad with no hair.  Both Vanessa and I bald made one hot team. 

 I finally headed home, of course many friends wanting to see a picture, and I went home to Mike.  I got back to Mikes house, and soon started getting ready for bed.  I went to the bath room and removed my make up.  I glanced into the mirror and then turned away fast and headed to bed.

 Sleeping that night was awful.  I was cold in the middle of summer.  Every time I turned from side to side it felt like my head was piece of velcrow tearing away from its other half.  Finally the morning came, and I headed into the bath room.  Mike was still asleep.  I turned the light on and stared at myself with no hair.  I cried.  I looked like a 12 year old boy.  Now I knew what every person with cancer felt as they lost their hair.  Your self confidence went down the drain.  What is a girl with no hair?

 When Mike woke up he told me I looked beautiful.  He was being honest with me.  He is not a good liar.  It really helped to hear him tell me I was beautiful even though I felt anything but pretty.  He left for work, and then I headed up the mountain to my house.  I ran down stairs to see my mom.  I hadn’t told her Vanessa shaved my head yet.  I knocked on her bath room door and told her I got a hair cut.  My mom knew immediately what that meant, She opened the door and I had my pony tail in hand, and a bald head.  She smiled and told me I looked good with my new hair cut.  By that time I had really relaxed.

 I went upstairs and got ready for work.  I worked at a private country club, and was a paid call fire fighter.  That day I was heading to the Country Club.  I put a cute black hat on my head so my bald head was less recognizable.  I knew some members would be disgraced that I would do something like that.  One member Steve, came up to me and asked “Jillian, what on earth did you do to your head?”  I told him I let my best friend shave it in support of her fighting Cancer.  He thought that was really cool. 

 Later I was told a member Troy wanted to see me.  I went up the pool deck where him, his friends and family were sitting.  Steve was sitting there with them.  He told me he had heard what I did and asked me to take off my hat.  I did and he responded with a smile and told me that he thought it was really cool that I did that.  He asked if there was something he could do to help Vanessa.  I said of course as he pulled out money from his pocket.  He handed me a thick roll of cash with a smiling approval from Maria.  Then he gave me $100 and said that was for shaving my head.  I quickly ran to my phone and called Vanessa.  She couldn’t believe the news.  Of course after being diagnosed she had to stop working and became strapped for cash.  It became hard to pay her bills.  Troy and Maria had given her enough money to pay all of her bills that month.  The donation was a huge blessing, and one that will never be forgotten.  A true kindness.  Already a one month into cancer, a blessing came to Vanessa, and blessing that affected all of us.  Who would have thought… something so good coming from something so bad.  Something so good all from just shaving my hair in support.  It was that moment I knew being bald was beautiful.



Decisions, Questions, and Answers

Vanessa and Matt were also in the Process of moving.  Angie (Matt’s mom) Allison, Richard, and Matt all continued packing.  It was time for decisions to be made on where Vanessa would do treatment.

One of the kindest people we have encountered during this journey was in the those first few days.  A hospital worker (identity will remain private) came to Vanessa and her family and shut the door.  She explained to Vanessa that her Cancer was rare and needed special treatment, treatment that hospital was not capable of giving.  She encouraged Vanessa to leave and head back to Southern California to City of Hope.  She told Vanessa to check in the Emergency Room at City of Hope.  Vanessa left the hospital and Visalia and a day later headed home.  On the way home she received a call from this lady  that she remembered City of Hope does not have an Emergency Room open to the public.  It’s a private hospital and the ER was only for current patients.  Plans then were diverted to UCLA. 

 Vanessa had called me and asked what she should say.   I told her to check it with chest pain as she had originally done up in Visalia.  Once she was back in the ER I told her to tell the doctor what had been happening.  Matt and Vanessa phoned me often during this night with needed advice on how much to say in order to be admitted. 

 Finally Vanessa was admitted as a patient at UCLA.  Lots needed to happen in this crucial time.  Vanessa did not have health insurance so the process for medical needed to be started.  Endless piles of paper work and information was needed for medical.  UCLA gave Vanessa treatment of chemo for approximately 1-2 weeks, then discharged her with no plans to readmit for more treatment.  She was referred to Riverside County Hospital. 

Vanessa arrived at Riverside County she was told by the Oncologist that her Cancer was beyond his and the hospitals capabilities of treating.  See when you don’t have insurance and medical is still in the process of being approved its nearly impossible for a person to receive the care they really need in a critical situation.  This Oncologist referred Vanessa to Arrowhead Regional.  Knowing that Arrowhead was capable of giving Vanessa the treatment she needed was a huge relief. 

 Relief did not last long.  The Oncologist never came to speak one on one with Vanessa.  All we ever saw an Internal Med Doc.  Although this Doctor was very kind he was not able to answer any of Vanessa’s questions about Cancer.  We didn’t know anything about this Cancer, what stage she was, the prognosis, nothing.  Communication was non existent.  Unhappy with treatment, for the time being we were stuck where we were.  She was getting treatment, just no answers.

When the Brain Decides Enough Is Enough

I stayed in Visalia a few more days getting things order and discussing options.  Three days later I drove home and brought Allison (Vanessa’s mom) with me.  Allison wanted to head home to get Richard; Vanessa’s Dad and pack a few more items.  That drive home was honestly one of the longest and hardest drives I have ever had to make. 

 Endless thoughts ran through my head.  What are we going to do?  Is she going to come home for treatment?  Does she want to be near us, or up in Visalia?  I can’t believe strep throat turned into Cancer.  She can beat this, right?  What if she doesn’t beat this?  What does she want?  Does she want to be cremated or buried?  Why am I thinking about cremation and burials, but really what does she want?  Who plans a funeral at the age of 23?  Why does she have Cancer?  WHY DOES SHE HAVE CANCER??? GOD WHY GOD WOULD YOU GIVE HER CANCER?

 Allison and I cried and spoke seriously, and sat silent.  Finally reaching Allison’s home, I headed home to my boyfriend Mike.  It was hard to sleep, so many thoughts, anxiety, sadness and anger crossed over me.  While going through my own wave emotions, Allison had an awful share of her own. Sometimes we as humans cannot process the information we have just learned.  Sometimes life is too traumatic and the brain just needs to shut down.  The brain needs to make things easier for us.  So our brain changes the situation. 

 Allison called me in complete panic asking me if Vanessa was ok, if Vanessa was sick.  I stopped dead in my tracks and didn’t understand.  She asked if she had been with me the night before and why we were together, where I drove her home from.  She continued to cry and worry, and it was then that I realized her brain decided the news was too much and shut down, locked the Cancer deep away, but Cancer knew how to show its ugly colors.  You can lock it away, but it won’t stay silent.

 I explained to Allison that Vanessa had cancer, and that we had just been with her in the hospital.  We came home so she could pick up Rich, and pack some more items.  She replied to me “Vanessa does not have cancer, I do.  I DO”.  I told Allison that she did not have Cancer, but Vanessa did, Vanessa was sick.  I told her I would hurry and get dressed and be on my way to come comfort her.  Allison was alone, and Rich was out running errands to prepare to go to Vanessa. 

Right away I called Matt, Vanessa’s boyfriend who was able to fly back home with the news of her Diagnoses.  I explained to Matt what was happening with Allison and that I thought it was best for Vanessa not to worry.  Vanessa did not need to know about what was happening with her mother right now, she had enough on her plate.  I asked Matt to please take Vanessa’s phone and not answer calls from her parents until I otherwise knew things had settled.  Just as I had gotten in the car to head to Allison, Rich called me and explained that things were ok.  Allison settled down and the brain allowed for her to know what was really happening. 

Sometimes, we just cannot process the information.  Sometimes life becomes to be too much.  Sometimes we need denial to survive.  Sometimes forgetting and denial are medicine to our souls. 

D Day

Vanessa and I lived nearly 6 hours away from each other. Our friendship was maintained by hours of phone conversations each day. Her boyfriend was on business most days leaving her home alone, and available to chat with me. We could sit on the phone and laugh for hours. The silliest conversations made us laugh. I remember these 4 days as though they happened this week.

One day Vanessa had been talking to me telling me she thinks she slept wrong. Her neck and her back were sore and she spent the remainder of the day being uncomfortable. Again the next day she complained of the same soreness in her body but continued on laughing. We spent hours that day laughing about the word of a new password I had created for an account... the laughing would continue to make her sore, but we didn't hang up. On the third day she called me first thing in the morning hysterical. She cried to me that she had two large tumors on her neck. At that time I had been working in the medical field for about 4 years. I couldn't help but to giggle at her and tell her that I am sure it was her lymph nodes. I was certain she had an infection that would explain the soreness in her neck and back. Sure enough she went to the Doctor and was diagnosed with strep throat. Piece of cake, no tumors, and just some antibiotics.

The very next morning my phone was ringing at 5:00am. No one ever calls that early unless there is a problem. Confused and tired I answered a phone call from Vanessa. She was calm and collected. She told me she had gone to the emergency room. I jumped out of bed and ran to the other room to ask her why. She told me she had a spontaneous phneumo thorax. As I paced my house I told her it was ok and a phneumo thorax could be treated. I was bewildered on why she had a phnemo thorax and could not think of any reason. So then the bad news came. She explained they had done an x-ray and that showed the phnemo thorax, but then she had to have CT scan to find out why she had this condition. The results came back to show a large mass over her heart the size of a baseball. She told me more tests would have to be run, but the doctors were certain the mass was Lymphoma Cancer. I told her I was on my way and I would be there soon.

After hanging up the phone I looked up Lymphoma on the web. I found endless information about Hodgkin’s Lymphoma and the prognosis looked great. The information calmed me on the web and I could not wait to get up to the hospital to tell her the news. To calm her and tell her how treatable this cancer is and what a great success rate it has. I drove for nearly 5 hours wondering how in the world this girl got cancer, but was relieved to know it was treatable and had a wonderful success rate. I hurried there as fast as I possibly could.

I arrived in Visalia to the hospital she was admitted at. Her surgeon had come in and explained that they were going to biopsy the tumor and while she was in there she should know if this was lymphoma Caner. Then the unknown came out. She explained that she would pray it would be Hodgkin’s Lymphoma. I was confused and thought "well isn’t lymphoma cancer Hodgkin’s?" She then explained that there were many different types of lymphoma some more successful then others, but if you are going to be diagnosed with one, Hodgkin’s is the one to have. I awaited the surgery anxiously with Vanessa’s mom Allison. This had to be Hodgkin’s. This could not be any other Lymphoma. According to the web, Hodgkin’s occurs more frequently then the others.

Vanessa came back from her Surgery and the surgeon confidently told us she knew it was Lymphoma Cancer, and she was just keeping her fingers crossed for the biopsy results to be Hodgkin’s. The surgeon came back with a sad expression on her face. She explained it was Non Hodgkin’s Lymphoma. The surgeon had made arrangements for an Oncologist to come in and speak with us. The Oncologist came in the room and shut the door. Closing the door never bares the best of news. I could feel myself sinking at Vanessa’s side. He explained to us that there were three main groups of Lymphoma Cancer. Nutricell Lymphoma, B-cell Lymphoma, and T-cell Lymphoma. In the three categories of Lymphoma lies over 30 different types of Lymphoma Cancer. We asked which of the 3 was the best possible to have. The Oncologist replied with "B-Cell" Crossing my fingers I then asked "and what do we have?" and he replied "T-Cell, the most aggressive and rare of all Lymphomas". The rest of his words were all blurred I couldn’t understand most of what he was saying because this all came on so fast.. One week ago she was fine and on a cruise with her boyfriend, and now, she has the rarest and most aggressive all of Lymphoma Cancers... how on earth could this be?

Everything Causes Cancer

To be honest, in early 2008 there was very little that I actually knew about Cancer. I had a Great Aunt pass away from breast cancer in my early childhood, and other then that what I knew was what I heard on the news. EVERYTHING causes Cancer. Microwaves, cell phones, certain foods, artificial sweeteners, the list is endless. So how do we prevent ourselves from getting Cancer? We eat healthy food, we exercise, don't smoke, limit our use of products that cause radiation, and use sun screen.

Vanessa has always been the picture of health. She always ate healthy, she exercised and was fit beyond belief. Even the use of a microwave was limited in her life style as most meals were always cooked on the stove or baked in an oven. Vanessa was someone I or any other person would least suspect of being diagnosed with Cancer. Between her and I, I should have been the one with cancer, I did not always eat right, I did not always exercise, and the microwave was my best friend.

Even though Vanessa did everything any person would do to maintain the bill of health, Cancer snuck up on her. She went from being the picture of health, to being over come by the disease that little is known about and everything causes.

Coping with Cancer

My name is Jillian.  In 2008 my best friend Vanessa was diagnosed with Non-Hodgkins T-Cell Lymphoblasic Lymphoma.  This blog is designed as a tool to not only help me cope with the effects of cancer, but it is my prayer that this also helps either a person who has been diagnosed, and or the friends and family with a loved one fighting Cancer.

This is a blog about my journey along side of Vanessa and also many of her points of view as well.  I am proud to say that Today October 19, 2011 on the start of this blog Vanessa continues to fight!!

In many ways cancer has a been a blessing to lives surronding Vanessa, including her own life.  I know your thinking "how could cancer be a blessing?" and I promise to answer that question in future posts.  It took all of us a lon time to see the good in Cancer.