I don't fit in the box

This will probably be more of a journal entry that normally would remain private...only to me or to someone who could sneak into my private space and secretively have a glimpse into my world...because of blogs....because of my calling to write a book about this entire experience...I am more inclined to share...if not for just the need to purge or perhaps even to document.

In early April, the first round of chemo was rough...but after about 7 days I started to feel like I could re-enter the world without scaring anyone so I started to work ...the first Big chemo (meaning chemo in the belly and in the chest) was on a Wed at that time and by the following Wednesday...I was working....the Thursday following was the small chemo (only in the chest) and it was simple and after a few days of resting ...I was working again on Saturday...and felt better than good for a week and a half. I had even taken some wonderful walks and actually felt chemo free!

I was given a list of instructions after the first chemo about what drugs to take if I became nauseated or/and had anxiety. I was given a schedule and if I maintained that schedule...the horrible Big chemo could possibly be lessened.

It has been my experience that not only have I become allergic to just about everything...which means I run the risk of allergic reactions and side effects that are worse than taking the drugs but I have noticed that the medical world wants to over medicate...a pill for everything...I have learned that I want to know what I'm up against so I know how and if I should medicate more ... less or not at all...

I'm not opposed to medicine...I have begged for medicine in many situations that were unbearable....kidney stones...twisted intestines...intense muscular back pain...liver biopsy Etc.....and although child birth was truly unbearable ....I wanted to try for natural childbirth....soon to find out I would be punished for that decision because " I was making too much noise for the other patients who took their medicine so they could be quiet and I was ruining it for them" . I guess this was one of the windows into that if you don't fit in the box that is prepared for you...you will be punished.

So...when it was time for the second Big chemo...I thought..." I can do this... I now know what to expect...I can do this"...many of my friends were building me up with comments of every chemo will be better....this will be great....you are strong ...you can do this...no problem....when friends would call and I would give them an honest answer as to what was truly going on....ie...intense belly pain...nausea....malaise....depending on the day ...it would be as if they had forgotten what I'm going through....why do you feel bad? I thought each chemo would get easier...I didn't realize that in fact each chemo would get harder...I started to feel weak and confused by reactions of well meaning friends...I only knew that I felt what I felt....I still persevered....worked through what I was feeling and tried to show strength...tried to accept what was ( is ) happening to me without complaining....I tried to be truthful and yet strong....so I go to the Big chemo on Thursday April 30 ...I immediately felt off and not so good....this became more intense each day...by Tuesday of the following week....I started to feel like I was coming out of it a bit....so I thought that if I worked on Wednesday that I would be ok...I trained clients...I drove to get my own blood work...I told my husband that I wasn't sure about driving or working and he said..you can do this you're strong...you're great....so I believed him and pushed through it ...AGAIN....after my last client I wasn't feeling so good and I was worried as I had planned to get up early and train my client and teach a class on Thursday....

I woke up on Thursday May 6 and canceled my first client ....it felt like I had just had the chemo all over again....I felt bad....I rested again ....had a cup of tea ....started to feel better....got up and got dressed to teach my class and then I experienced painful diarrhea...I still got myself together and started driving to Jill's house to teach my class....as I drove I talked to two people on my cell phone...both of which I told I wasn't feeling well and had to hang up...by the time I got to the intersection of Encinitas Blvd/Quail Gardens....I was feeling like I was going to faint in the car...I was scared....I was losing vision and by some miracle....I barely made it to Jill's house....I couldn't remember what house to go to and finally turned the car around just in time to make it to her door and to ring the bell while I was sliding down the door fainting....I came to and began pounding on her door from the ground but no one came....I was getting more and more frightened....I didn't know what was happening to me....then I saw one of my students Linda and I yelled out to her to call 911 and the rest of the story is either what I remember or what was told to me that happened...

I felt like I was in and out of consciousness....I was crying because that is what I do when I'm scared...that crying led to hyperventilation because the more time that passed that made me worried about what was happening to me ...the more I cried and that led to more hyperventilation....the fire dept and paramedics were more focused on that and not what we were all telling them....I tried to tell them what happened to me as I drove over to Jill's....I began feeling nauseated...and felt like I was becoming very heavy....I felt like I was fainting in the car....I felt like I couldn't see very well....I felt heavy and weak and ...I started dry heaving.
They ( fire dept/ paramedics) wanted to focus on their diagnosis....anxiety and panic attack...not the fact that many students there ...including myself ....were telling them about my history....that I was on one of the strongest chemo treatments and it was most likely that I was having a reaction to that...I asked to be taken to Scripps La Jolla even though we were closer to the Scripps Encinitas....I am treated at Scripps La Jolla....my treating Doctor is at Ximed which is Scripps LaJolla...it didn't make any sense to take me to Encinitas....I also knew I was supposed to have the smaller chemo that day and if I were already there....it would be easier ....My doctor could get to me faster if I needed surgery....I really didn't know what was happening and I wanted to be closer to my Doctor....I have had almost all of my care there. The paramedics winked at my friends saying to me yes we'll take you to LaJolla....wink wink and saying yeah right...she's going to Encinitas....my friends overheard this and saw the winking...a few of the firemen/para asked different friends if I got anxiety easily or had panic attacks and each person said no that it was opposite....that I was strong and focused and from my yoga and Buddhist training...that I had the tools to deal with anything....they didn't listen to any of them....they didn't listen to what I had....advanced stages of ovarian cancer.... a recurrence....a chemo treatment that is intense with many side effects...they didn't listen....they put me in that box...the anxiety and panic attack box...they told the hospital that I was having anxiety as the primary cause....even the hospital wouldn't listen....my friend Susan tried to explain to all of them what I'm going through....they wouldn't listen....I was dry heaving so badly ....once they gave me Zofran for anti nausea....they could see that I was still very sick....the blood work came back that I was dehydrated....another outcome from the chemo...and still I was put in the mental patient box.......the nurse told me that when people like me come in and don't take their medicine for anxiety that I was just going to have to feel bad and that is the way it will be ....she showed no compassion or kindness...it was like they didn't really care....what has happened to people???? There was zero compassion from any of them...the er doctor finally started to come and around and treat me with respect....since the nausea had subsided...it was decided that I be wheeled over to my chemo appointment....my chemo nurse had been told I was better....meanwhile I could barely sit up and I couldn't walk and I was getting worse not better....even after fluids and anti nausea....the er doc wanted to admit me but decided that he should turn me over to the care of my chemo nurse...I could tell that he finally started to realize that I was really sick....

Once Dawn (chemo nurse) saw me she said "why did they let you come here like this? You are too sick to have treatment....I'll give you more fluids and then send you home or back to the hospital"..after more fluids and more anti nausea, I was slowly improving to the level of with help walking to the bathroom....with help getting back to the car in a wheelchair....I went home and have been sick ever since....My friend drove me to get chemo on Friday....I barely could get there and I was very happy that I did get there because Dawn and I were able to talk....and cry openly about my experience and the experiences of so many patients....this is some of what we shared...

I was really in a dark place...I had woke up Friday morning and told my husband that I was through with treatment ....the overwhelming feeling of being dismissed....the overwhelming feeling of being put in a box that can change the way I'm treated forever....our world is so cruel to people that have mental problems on any level....even a seemingly simple diagnosis of anxiety can change the way Doctor's talk to you...listen to you...care for you....they begin to focus on that and not the root cause....of course anyone who has been diagnosed with cancer will experience anxiety...of course anyone who has cancer come back will have anxiety ....of course this will come up and with the help of loved ones and a supportive medical team....we can get through this....but once you are not heard any more....once you are put in the box....once you are dismissed as if what you feel and say no longer matter....what's the point? You want to crawl in a hole and just go...so ...I told my husband that I wasn't going to continue...I felt like I had ruined his life and everyone one else's life...that I had become an annoyance and that if I just let this run it's course....that I would just let go and everyone would be happier....my husband could find someone who would be able to make love and he could have a good life....a better life....I felt very alone and very dark and very sad that my view of humanity had been shattered! When a loved one gets sick...from cancer or from something else that is equally or even more difficult....it brings out the strangest reaction by loved ones and strangers....good friends disappear....strangers become closer....some good friends know what to say and are helpful....other good friends say things that blow your mind and you don't understand....strangers don't listen or care ...even try to run you over in a medical building parking lot because they don't care....they don't have time to care....no one has time....including me...then out of the blue...the kindest most incredible loving acts happen...people come and bring flowers and food and offer to drive and show up when I'm low or even high...some people read to me and some people just know what to say or not to say....some people laugh with me and other's cry with me or both...the best is when I can totally say the truth and it's ok...

So when I told Dawn ( chemo nurse) what I told my husband....about stopping the treatment....we both shared about an hour of the ugly cries as she begged me not to give up....the treatment is working....the numbers are going down....you could actually be one of the ones who beats this....she went on to explain what I wish I would had known all along....or maybe I wouldn't have really understood without this last experience....maybe you need to me raw on your belly screaming for help to really get it...she told me that this is a tough treatment...one of the most intense treatments she has ever seen ...she told me that most people don't get through it for reasons similar to my experience or and worse...she told me that what I experienced on Thursday was NOT due to anxiety or panic attacks....that I was having a reaction to an intense chemo and that it is only going to get rougher....

I am only at half the dose they want me to take....each chemo is progressively more difficult...it builds up in your system....each treatment will get more and more intense and the symptoms I am having will increase...she told that two other patients in one week both had fainted while running to the bathroom to throw up and one broke her leg and the other has a skull fracture from her fall....she told me that many patients end up in the emergency room within the first week from the horrible side effects begging to stop the treatment....she told me that she doesn't understand why the medical field has made this anxiety/panic attack box and why more and more patients are being not only put into it but locked up in this box and treated differently....she doesn't understand why the fire dept and the paramedics and the er room would NOT listen to the history of my situation or the many patients who have similar stories and have been shut down from lack of compassion and kindness...she cried and cried with me because she also sees how a lack of compassion ....a lack of kindness....can push even a strong patient like myself over the edge....if I were suicidal I would be dead by now....I was pushed and shoved into a dark place....I had been doing great and this all came out of left field and I was scared and still am...

This example that I'm sharing is only one of many ...my whole life and the lives of many of my friends have had similar experiences....I don't understand what is happening to our hearts....

Prior to chemo ...prior to surgery...I had explained through emails ...through the blogs ....through one on one conversations...through group conversations that one or more of the following could happen and if they do....please don't take it personally and just let me know what I said or did that was off and we can talk about it and let it go immediately...these are things that have happened or are happening or could happen...

• sometimes I don't call people back

• sometimes I don't even call the people back that I love the most
  

• sometimes I call strangers back faster than the people I love

• sometimes when I say what I need or don't need it can sound blunt or personal

• sometimes I crawl into a cave and can't relate to anyone

• sometimes the normal sounds of the day sound like someone is torturing me

• sometimes I get confused when I don't hear from people that are my friends...even though I might not be able to call back

• sometimes I don't know what I need

• sometimes I just want to be left alone

• sometimes I don't know why I want to be left alone

• sometimes I don't know anything

• sometimes I feel like giving up

• most of the time I feel really strong

• sometimes I'm confused when good friends stop calling because I haven't called them back

• sometimes I'm overwhelmed by the love and kindness

• other times I'm shocked by the lack of love and kindness

• sometimes I get tired of telling people how I am

• I get very tired of explaining why I don't feel well especially to people who know what is happening

• sometimes I feel like I'm only valuable when I'm strong

• I get very sad that I can't make love to my husband for over 31/2 years

• I miss teaching yoga

• I miss experiencing yoga asana

• I miss having a glass of organic wine and laughing with friends

• I miss feeling normal

• when I'm dismissed...I feel devastated

• I'm sad when even my friends believe that I'm in the box or find a new box with a new name
  

• I'm really sad when friends forget that I reminded them that the medicine ( chemo) can make me do and say things that are not me....it has rarely happened...but it's true

I guess everyone needs an advocate....someone who truly believes in the person they love and care for...I'm so tired of defending myself...I really need to focus on healing and feeling supported and loved...this week has reminded me of the many times that this has happened before....not only to me but many of my friends and the stories of strangers...the many wonderful people who have committed suicide because they were dismissed...the many loving and wonderful people who gave into their disease or old age because they were discarded and dismissed....the many ...just like me who are tricked into a dark place because we lose our humanity....sadly....we are seduced by the unkindness....the lack of compassion....the dismissal...even when there is amazing love and goodness that not only I feel but what these other people feel and felt as well...the lack of compassion has devastating and long lasting effects on us personally and on our world....

This Friday is another attempt to have a Doctor's appointment with Dr. Bahador....several have been canceled due to emergency surgeries that he has had to attend to at the last minute....we are going to discuss a plan....the same plan ...a similar plan....or a very different plan....I don't know what to think or do right now... I took a few extra days to recover...which has helped...today is already starting off stronger which is why I'm able to share these feelings...I just don't know anything more to do than to take each moment at a time..I don't know what is going to happen with the cancer....I don't know what is going to happen with the chemo...I don't know what is going to happen day to day from the treatment or the side effects....I can only know what is happening right now....this very moment....

I'm reaching out to share so that I have documentation for insurance purposes and to purge the pain so I can move on... most importantly to share with others who have lost their voice or to plead with anyone who has or is dismissing anyone in their lives ....who may be taking away the voice of a loved one or who has put a loved one in the box!

I'm sorry if I have offended anyone...I'm sorry if you have been calling ...sending love through the air or cards and gifts and I have not responded...sometimes I want to and I get on the phone with insurance companies or with other people and I'm then too tired to call anyone else....I'm sorry if I have confused anyone or if I have treated you badly....I'm sorry for what this cancer experience for me has caused for any of you...I know that many of you have lots of love to share but I also know this all gets old and it gets not only difficult but confusing for all of you....I'm really sorry for all of this....and it's just going to get more difficult.

I know that most of you are doing the best you can...when someone you love is sick...it's not easy to say the right thing...do the right thing...there is no handbook and even if there were...we are all different....what comforts one....depresses another....I think if we just become mindful of our ability to not do what is good for ourselves ...but truly show love and compassion for that person and put ourselves in the shoes of the other....it's not easy...it's sometimes impossible....just find your compassion.

I started off strong and ready to put on any amount of warrior clothes necessary ...and for the most part....that is how I do it....I visualize an elixir of magic potient running through my body....I see the cancer leaving my body...I use my training from yoga and Buddhism and just life's experiences to give me the tools to deal with anything that comes my way...but then...as a friend of mine described ...a beautiful strong hearty piece of wood can become a splinter if it is continuously chipped away.... and what has recently given me a new view....another friend said...your fruit hasn't ripened yet....it's not time yet...the fruit will ripen...this helps...