Pondering Cancer

Yesterday I had a fairly unpleasant experience with people who consider themselves scientists. In the beginning I was having a discussion with them that was only one of dialogue. But two things happened. 1) I wasn't in a good place for people who are rude or unpleasant and didn't realize it and 2) they were not open to ANY research or ideas that were not 100% on board with their way of thinking (and most of their thinking were OPINIONS that used words like, "evidence based medicine" but really just used a bit of data then used a bunch of alarmist words and phrases without considering multiple views. THIS is what I consider the worst parts of many disciplines today. We get so wrapped up in our own little view we mock or refuse to hear other perspectives. No I'm right right right- look at MY DATA.

Meanwhile, I wasn't even trying to prove anything at the time, I was engaging in a dialogue... but again, once one of them starting being rude, I didn't back away or engage pleasantly or stop the conversation - which I usually do... I snapped back.

Usually when I'm not able to be open to multiple views or have a dialogue without getting upset I just don't have one. This let me consider something even better... when people are going through bad times like family illness (or their own illness - or the death or loss of a family member etc etc) THEY ARE NOT AT THEIR BEST. (I was not at my best. Imagine that!)

I'm reflecting the experience yesterday and considering it from the perspective of how my entire family behaved while while my dad was going through his surgeries and we were getting increasingly bad news from doctors. It was an amazing time.

We were actually VERY good to each other. We didn't fight or freak out but actively worked together during the worst of it. We are culturally very diverse group of people and it was amazing to see how we engaged each other... but also very interesting to see how differently we approached difficulties, illnesses, and illness in general.

My sister in law (a woman who has been in our family so long, I call her my sister) is hispanic. When someone is very ill and in the hospital - they pull together with close friends and family to stay at the hospital and never leave the person alone. Meanwhile, as she told me, they worry less about "advocating" for the patient. In her own words, "I would trust whatever the doctor told me" about his health, his medication, and anything to do with his diagnosis. There would be fewer second opinions or checking with specialists etc but far more social support of the actual patient. And she was very much like this.

For me, I was much more genuinely concerned about my father's medications and his pain and that he was being taken care of and getting the care he needed. That he could be at stage IV cancer meant something had been over looked and now I wanted things like pain control when he had pain. Nurses would say, "He's going to have some discomfort." But after multiple surgeries my father is the type of person to be very stoic anyway. And he felt he shouldn't ask for any pain relief. But soon after he would be groaning in pain. This was VERY unacceptable to me and I finally had to talk to palliative care about it (with my father there). They worked with him to allow him to have levels of pain control without doping him out but also without feeling so in pain he couldn't think. And also helped him realize he's not less of a person for having it.

My brother on the other hand is more of a person to give orders- like tell my mother to drink water or get rest. He's the one to set up schedules online for all of us to communicate and make sure we are all on the same page. When we were getting diagnoses and finding out information he was the first to become silent and do research rather than ask questions because he likes to have all the information first. (And I on the other hand like to ask as many questions about it as possible because I like to gather information and work collectively- but it works out very well, and it really was a lovely system).

My parents were amazing together. It was humbling to me to watch them. My mom would take a paper to my dad and go sit by him. I have never wanted a relationship like them until I saw her sit next to him in a hospital bed when he was unable to feed himself or talk and I realized she was there for the duration. And it dawned on me what love really is. Watching them together healed a part of me. And I realized sometimes we are blind to our own family, especially our parents.

And mostly, my friends have been amazing through all this. Cards, and calls, and messages, and tenderness. And I have enormous gratitude for the love and support to take care of my family while my dad goes through treatment.

Ultimately - I realized it is important to know WHY people do what they do. It is important to see how and why people react. I've pulled away from many of my hospice and cancer chats because it's all up in my face every day. Somedays we've had six hour onc appointments and I just don't feel like dealing with it anymore. And somedays I'm fine and I feel uplifted and funny and happy. And somedays I don't know when I'll feel emotionally wonky. Like I'll feel like chatting about something interesting but I'm not in the mood for rude or unkind people and it will come out of no where. But this is part of it. Life happens.

Right now I'm more invested in allowing that I'm OK with being vulnerable and OK with accepting my family's strengths. It is informing my work as a scholar. It is helping me see cultural differences and how we can all work together to be stronger and "in this together." And... it is also just helping me see myself as human. Because ultimately 1 out of 2 men will get cancer and 1 out of 3 women will get cancer and this is how it goes. It is a rough go and we need to be loving and kind. And some days it is harder and somedays it is easier. And every day I am looking for a reason to love. Because I'm tired of shielding and hiding and being afraid. It is time.

When are Crazy Sexy Cancer AND Evidence Based Medicine Both Bullshit?

I'm replying to Jody's "Back to Reality" post and she is discussing
Kris Carr's Crazy Sexy Cancer Article

Jody says MUCH of what I wanted to say about Carr's article in the times. When people forwarded it to me they said, "Inspirational isn't it?" And I wanted to say, "Sure, it's inspirational, but... this ISN'T what cancer looks like, always." On the other hand, I was once talking to a friend in a wheel chair who pointed out to me, "Why CAN'T people in wheel chairs be sexualized? Why CAN'T people fetishize us just like they do other woman? Why is it, sicker or worse when they do it to us than when they do it to women who aren't disabled?"

And I realized, ok - SOMETIMES that IS what cancer looks like. SOMETIMES people DO kick cancers ass. Sometimes people do run every day, eat healthy food, and get all, "rah rah rah go team" during cancer treatment- DEPENDING on the type of cancer they have and the extent and duration of the treatment. Sometimes it CAN look like that. And -- People LOVE a RAH RAH RAH *CHEER LEADER KICK* story.

People DO NOT like the reality of most illness stories. People don't like what it is to grit it out, to cry, to sit in the darkness of bleak nights - the soul search. Death vigils, or even barely surviving and going into remission, but having long ptsd, or depression, and having to take anti-depressants for a long time afterward, and needing therapy for a while. People don't like the stories of losing friends or lovers or spouses, or that your husband cheats on you or (like me, just fucking divorces you in the middle of the worst of it).

No- they WANT crazy sexy illness. They want to think "OH YES- THIS IS THE KIND OF ILLNESS I WOULD HAVE." No one wants to think they would get ill anyway- but *if* they did, surely they would be crazy sexy during it. Meowza.

My other bigger issue is this: NO ONE - ABSOLUTELY NO ONE- gets to diagnose us into bad health. And NO ONE gets to tell us how we will FEEL during it. There is NO right way to do illness. There is NO way to do it right or wrong. That means - even "evidence based" medicine - while powerful and compelling - doesn't motivate me completely. I STILL have a right to get massage and meditate, and do reiki, and hell- if I want to fucking drink green shit - I CAN FUCKING DRINK GREEN SHIT. And unless my doctor has a VERY compelling reason why not- FUCK THEM. They aren't my boss, they are my TEAM. *I* am in the middle of my healthcare team.

And it is VERY VERY VERY important to remember just WHO AND HOW medical research is funded right now. It is saddens me to say it - but it is NOT being funded equitably to included CAM or many integrative methods. IT SHOULD BE BUT IT IS NOT.

So-- Unless there are compelling reasons WHY something will harm us - and it makes us FEEL BETTER and we WANT to do it - WHY NOT DO IT? (Like acupuncture or reiki etc).

I like to take plenty of B vitamins, D, and magnesium. And frankly - I was taking fish oil long before it was "evidence based" to help with joint pain. Why? BECAUSE IT HELPED WITH MY JOINT PAIN. Who told me - a CAM/integrative MD. And lo- behold... my rheum YEARS LATER handed me a JAMA article about how it will help with my bone swelling and pain. YEARS AND YEARS AND YEARS LATER. I laughed and added more fish oil.

And now - I take more vitamin D than ever. Why? Because it is evidence based. But I was ALREADY DOING IT. I've had an onc tell my father that it might not be good with his chemo. And I asked for the evidence. Not just because he didn't THINK SO- but REALLY sound evidence. Because really- we lose our magnesium during chemo - and frankly- we feel like shit during it. Magnesium is good. I don't want an onc THINKING it will be a bad thing to take magnesium - I want to KNOW it will be bad. And then fine.

I am sick of doctors not liking empowered patients who heal through food. There are too many patients who hoover down shit loads of fast food and awful food and make themselves SICK with shitty food and doctors bitch about them... but when the opposite happens - healing WITH GOOD FOOD (and whole food) -- there is a backlash-- and doctors consider it almost treason to remove gluten or toxic foods like sugar. They almost act as though shoving a donut, big mac, large fries, and supersized coke into our face is BETTER than eating a spinach salad and being AWARE and healthful.

So -- that is my take on crazy sex cancer and evidence based medicine and trusting your doctor and being a team and being willing to be INTEGRATIVE and recognize that there are multiple issues at work. And many doctors have been steeped in western medicine and would rather solve a problem with an Rx pad than lifestyle changes EVEN if lifestyle changes are JUST as effective.

And sometimes - like cancer or other illness which REQUIRE an Rx - well-- those might need BOTH. And I haven't even mentioned spirituality here - but those are powerful forces in people's lives for those who do believe.

Let's just say, I'm in the middle here - I don't think cancer is all that crazy sexy - but I don't think the white coat will save me either. I call bullshit on BOTH OF THEM. I will use the best of both of them too!

Generosity of Spirit and Friendship

One of the things that has really helped me feel less alone through everything was something completely odd. A friend of mine I've never "met" in person got huffy with me for not connecting with them as much online as usual. I've been stressed about my own health and stressed about my family... and my friend was holding back and not saying anything. I felt they didn't care. They are very well liked online and in their real life they are VERY important and in demand and have an active personal and professional life.

Instead, they waited until we were both available to talk privately and they essentially said, "I've missed you and you've been neglecting our friendship." I REALLY needed to know they cared. I needed to know they wanted me in their life. We chatted for a bit and re-connected. But that MATTERED to me. It really did. I cried knowing that I mattered to someone more than just as a funny person or someone who is around once in a while. I needed to know THEY cared if I am here or not here.

It actually gave me the self-esteem to think about my personal life and how my friends behave and what I believe about myself. Many of my friends are out of state. And that is sad for me- but we do our best to connect and talk. But there are a few I am making here in state. And some of them seem to "allow" me to love them with no seeming reciprocity. And it doesn't feel good. And having my friend reach out and show me that my friendship MATTERS and it is WANTED helped me realize that I MATTER to people. It helped me realize that I deserve to have people in my life that miss me when I am not there and that if I don't text someone for a few days- they should text me back and check in with me and ask how it is going with my family. Reciprocity.

I've found overwhelming support with a few friends. People who have been caretakers or been through illness. People who KNOW what it is like to have a rough patch. And sadly- I've found a surprising lack of it in others. People who have asked me for favors or who have pretended to be genuine but interestingly the moment I not in their lives I am out of sight out of mind. That hurts me, but at least I know. It helps me re-evaluate. And it helps me understand more about what I need in my life.

I NEED to love and be loved. I need reciprocity. I always have. There is a balance in life of kindness and sharing and taking care of people in need and in receiving love. There is a balance of joy even through pain.

People have been very good to me during my dark times. Some have offered to send me gifts as acts of love. And though it is difficult for me, I am learning more and more to open up and receive these with joy. To accept that I am worth loving. And know that I can show love and kindness and generosity of spirit to others when the time comes. And know-- that I need to make wise choices in my friendships (even though sometimes we don't ALWAYS know up front how people will act, so sometimes our relationships simply need new boundaries or re-evaluated once we have learned more about people or ourselves).

In my case, I have a loving heart and I take people at their word... and many times, I have not stopped to listen or see if there is a tit-for-tat or true balance in relationships. I just trust that things balance out when there is LOVE. But I am learning that SOME PEOPLE who have not grown- truly grown, have no interest in being this way. And THOSE PEOPLE are the ones that I need to be wary of, especially when I am vulnerable and hurting and sad and dealing with illness and caretaking and loss. I tend to overgive and over love - and those people tend to overtake without feeling a sense of either gratitude, reciprocity, or generosity of spirit.

When there are no boundaries or no balance in our relationships, it is easy to feel taken advantage of and resentful. This is my job. I am learning it. When people WANT ME and reach out for me and say, "Melissa, where are you - why are you afraid to reach out and ask me for help?" THAT is someone seeking relationship with me. They are telling me not to go it alone and they are telling me they are HURT that I would give love without accepting love from them.

People have given me their phone numbers who are not HERE. They have checked in every day to see how I am. And THOSE PEOPLE are teaching me what it is to RECEIVE LOVE and to HAVE LOVE and to know that I am WORTH LOVING with ZERO holding back.

I am truly grateful for this juxtaposition so I can see and feel and hear and do love and make wise choices in my daily life. It is an ongoing experience. It is new to me. I'm grateful for the experience so I can grow and recognize how people act lovingly and show love and do love. Love is not diminishing. We do not come away feeling resentful or used or unacknowledged from our kindnesses. And THIS is how I am learning friendship and support and generosity during my darker times.

The Tables Have Turned

My dad went in to the doctor thinking he had strep throat or an infected gland and came out yesterday after three surgeries with stage IV cancer, a trach, and a feeding tube and a consult with an onc tomorrow.

There is a certain helplessness to being a caretaker that extends different from being a patient. As a patient you are never separated from the pain, the horror, the difficulties, or the reality of what you are facing. And as a caretaker you can "take shifts" from the demands of all this. You can clean body fluids and body parts and meet physical needs and then LEAVE.

However, there is also a certain urgency I feel watching my dad be in pain. I told his palliative doctor, "My father's suffering is causing me to suffer." His pain hurt me.

And bringing him small joys makes me happy. He likes to swish with coffee because he cannot eat. He doesn't even want to put coffee IN his feeding tube, he just wants the taste of coffee in his mouth. It brings me INFINITE joy to do this for him.

There are things I do that I find repulsive - like getting vomited on or snotted on through his trach - and I just wipe it off. There are things I do that I am terrified of doing and I do it anyway, because it MUST BE DONE.

And I remember caring for my own body in this way- but doing it with much less love and much more grim determination. I cared for my own wounds or damage, or I give myself injections because if I don't I will die. I do it for my father because I LOVE HIM and I wish to keep him alive and comfortable. There is a sense of gratitude that I CAN give this to him. He took care of me and helped me and now I am doing it for him.

Meanwhile, I am also noticing, with much unpleasantness, that the stress of this is certainly causing more of a lupus flare. I have mouth sores and had to drink milkshakes for the last few days. I TRIED to eat solid food yesterday and the eating almost drove me to tears.

When I sit WITH the emotions - truly SIT with it, I feel overwhelmed and so sometimes I simply stay with what we are doing in the moment. We are right now.

I am sitting in the darkness. Yet, as I told someone, I know that god made the dark as well as the light. And so I will sit with it until the light comes back. I DON'T want to do this alone. I feel very lost. There are unspeakables - and so I don't.

I feel incredibly selfish to be adopting a cat- but I wanted someone or something to touch me and give me human connection and to keep me feeling full of LIFE and joy. I want to feel joy again without feeling like I'm swallowing the world inside my throat every day.

Nothing feels right. I don't feel right. My skin feels too tight and I'm cranky and tired and angry and sad. I don't want this.

All Of Me

I wrote the other day - "The greatest gift we can give the world is to be all of who we are."

Lots of people responded positively to that. But I never finished my thoughts.

What does it mean to be all of who we are? What does it mean to truly develop and heal and come into our fullness?

It is a vulnerable process. It requires a willingness TO HEAL. It requires a willingness to FEEL. And you know what - FEELING often SUCKS.

How often have I been AFRAID to do something. I have lived a great deal of my life unwilling to do something. "I don't WANT to go through this." I am very risk adverse. Though I seem powerful and passionate and high energy - there is a strong core of safety and stability as well. And this safety and stability (the one who shows up for work, for class, and gives her pets their medicine) - is the one who also clings to situations that won't put me in situations that MIGHT make me deal with lack of safety. (whatever safety is in that moment).

I have often been UP for SPEAKING OUT on behalf of OTHERS. I will be on YOUR SIDE if you need me, even if it is an unpopular side. I will listen to all the perspectives and understand that there are multiple truths and that there is NO ONE RIGHT - everyone can be right. And even this - is not a popular stance - because people might want me to take a stance, and my stance is "yes to all"... and yet I am VERY confident and VERY sure that we are all in it together. And there is no "win" or "lose" unless we are at war with each other.

But when it has come to ME -- I have taken a far longer approach. I have not been willing to FULLY FEEL. What is it to fully feel my anger? My pain? My loss? My grief? What is it to admit I WANT something? What is it to ASK for what I want and then GRACIOUSLY accept it?

I am thinking more about my strengths, my gifts, and what I offer. I am considering my soul imperatives and what I have completed and by what means I have done them. I am also recognizing many ways I have committed what one woman calls "a soul sin" - when you act against yourself.

In many ways I have kept my blog free of all outside family and professional references. I'm reconsidering this view. I'm reconsidering why I have done this and how I have used this. If I am TRULY an integrated being, why is THIS only being used as a patient voice? If I am a woman who has MORE than an identity of "just" a patient, why then have I ONLY shared with you that information.

Often it is to protect my family and students and clients. And - because I am inherently private. And so much of my limiting in this blog is also self-protection - to share in a limited way and to be the Melissa I want to be seen AS and to tell the story I want to tell without telling an INTEGRATED STORY. But I am deciding that in order to solidify the idea that to BE all of who I am - It is a willing process to both FEEL and not numb, and know myself as all of who I am - even if I have never recognized that before - or I was wrong (brains think - but they can think wrongly in a loop). I will share a little more fully without breaking confidences. I will be more integrated here as a symbolic act of healing.

I am a Patient. And I Matter

It always astounds me how very much I WALK in the convergence of patient-ness and me-ness. Even when I don't mean to or want to - I AM a patient. Thus the realities of being "one who suffers" crash home all to often.

It happened for me when my marriage broke down and I ached for it not to, yet I did not know how to stop it. I was so sick at the time YET I DID NOT KNOW HOW TO DO BETTER. I DID NOT KNOW HOW TO BE A BETTER PATIENT. Like a machine I could cite the research indicating how certain patients lose up to 80% of their friends and many marriages end in divorce - (even mine)! Even knowing the data didn't stop it. I COULDN'T STOP IT. It wasn't even self-fulfilling. It just happened.

It is like knowing a tidal wave was coming and being unable do anything but watch it move over the roof of your house and cling to what you love, and watch it wash out to sea anyway. That is what illness is sometimes. It is watching your life float away just out of reach and everyone around you alternately asking you for money to help you or leaving you because you are too much of a victim or sometimes, just sometimes, you can "inspire" people with a message if you are "strong enough"- BUT AT WHAT COST? AT what cost?

Even now I feel a sense of looking into an abyss when it comes to romance - as though it will never happen for me (again). As though I had my shot at family and connection and building it again is laughable at best. Though I trudge on because I know I am worth it - and I know I must at least have a profession and LOVE MYSELF. And so I AM.

I watched even the other day during a lumbar puncture - how I reacted to discomfort and pain. In one fMRI study they found that men and women reacted differently. Men tended to (when put in pain, close down emotionally and women reach out - and their very brain structures change). I made note of this but never considered it until NOW. The other day during my spinal tap I was feeling very alone. It was a routine outpatient process and I was very much "invisible." I said, "This is very uncomfortable." And the doctor asked me, "What are you feeling?" I told him I could feel the needle and that it was unpleasant. He put more numbing there and continued. But he got paged and was upset and began grumbling. And I said, "Don't get upset while you are working on me. It is not TIME for that. STAY WITH ME. Be with me right now."

I was reaching out and reminding him THAT I WAS THERE. I didn't mean to. I realize now that I was simply so alone in the discomfort and I didn't want him messing up out of being angry or over burdened. And I said, "I don't want to be alone in this." Nothing more was said. Of course - doctors like that are not overly compassionate. But I realize NOW that I was doing EXACTLY what research shows women do when they are in pain. They reach out. They seek connection with their environment. We are the sum of all our parts. And though I have tried to live as best as I could the entire time. Looking back - often I am very much a "typical patient" in that I reflect exactly what the research indicates. This astounds me. It really does.

In sociology, we talk about people who go through a great tragedy, like job loss or illness, we can watch what happens to OTHERS and see that it is a social problem and say that it is too bad and shouldn't happen. But when it happens TO US, we tend to self-blame, and hold ourselves accountable and to a higher standard than we would other people. I have certainly noticed this about myself.

Other people will say, "You have been through a great deal, give yourself a break." But it angers me. I want to be where *I* WANT TO BE. I am driven by the same goals and dreams that I always was. I don't WISH to modify it. I wish to push through and be a success. I wish for the picket fence and 2.5. Yet I have already had that explode and shatter and shatter and shatter.

Part of me wants to say, when can you give up that dream? When can you just be happy because? I asked someone today, when have you been content? And he replied, "never, I am a shark, I must always be moving." And oddly- I used to be him! I never used to stop and congratulate myself or let myself BE HAPPY or content or feel REAL JOY. I never celebrated. This person and I have much in common in our drive and how we view life.

But today I told him many tales of how much happiness I have had in my life. Moments of friendship and connection and teaching and gratitude and even times with my ex when I have been blissfully happy. And I realized that watching my friends die and watching people reassess their values from illness and loss has given me a gift far greater than I even knew until right now in my life. THIS has been a great gift.

I know in my heart how valuable people are. And I know know how valuable life is. And I know how short it is. And I know we all deserve each other at our very best. And that always means kindness when we can and forgiveness and honesty and integrity. All the inner qualities that MATTER TO ME. This is how I know that what I am doing IS WORTH SOMETHING. That what I will leave behind in this life COUNTS. It has meaning. I am living. I have a life. I am doing my very best with what I was given. And I mess up and that is OK. And I am not always happy. And that is ok. But I have gratitude. And my wealth is in my friendships and love and the experiences I have been given. And someday - someday even wisdom as I reflect.

People matter. I matter. You matter. WE MATTER. This matters.