butty's Cancer Blog
January 11, 2010
Hi Everyone!
Happy Happy Happy New Year to All. . . PBS is great and there is one program in particular I want to draw you attention to . . . this program is available to each of us online anytime we wish to watch. The program is a part of a series on EMOTIONS in the Health and Wellness TOPICS and the title is RETHINKING HAPPINESS. It was so informative and helpful to me. I took away from the experience of watching it many ideas and thoughts; but, more importantly I heard and sensed how happiness is contagious! Hummmm, its that simple. If I am happy the people around me feel more happy… hummmm…. I hope that if I ever become depressed or sad as a result of my experiences of living with cancer, that one of you kindly remind me of this post and redirect me back to this program too! I hope you take time to search this program out and experience it for yourself as I think you may find it rewarding to watch.
Jill kindly made arrangements for some of us to read a book called -LIFE OVER CANCER, The Block Center Program for Integrative Cancer Treatment- I WILL post a specific BLOG just about my experiences reading this book someday soon; but, it I have found this book to be VERY VERY helpful, as a person living and surviving with cancer, that I want to recommend reading it too. Much of the information is so valuable that I have to suggest getting a copy for yourself… the whole book is helpful; but, some of the highlights I found most helpful included: CORE NUTRITIONAL NEEDS - YOUR SELF CARE PROGRAM and the HEALTHY DOZEN POWER FOODS. I could pic up the book, at any point during my journey with cancer, and find specific well researched guidance for most stages of the journey from Diagnosis to Staging to Treatment, etc. etc. As a matter of fact, the information in this book is organized according to each person’s individual timeline / journey with cancer. I will create one specific post about the book soon; but, until then I highly recommend the book for reading by survivors and caretakers alike. I didn’t want any more time to pass by without sharing this observation and I will post more about it later.
and now to the topic of this post….. I had my CT Scan today of my lungs of all things, despite having anal cancer,—- just to make sure that there is no sign of the disease spreading to the lungs. Given the way the blood travels through the body; if anal cancer were to show up somewhere else in my body it would more than likely show up in my lungs next. I have no idea what the results of the test are; but, somehow I feel that I will get good news; yet, at the same time my journey with cancer so far has made me feel more comfortable about facing death that I really don’t have any concerns about the results and if I get news that the cancer is back and has spread; well, then I get to live with that too; hopefully with as much courage as I have seen others demonstrate within this space. In all honestly, I will shit gold bricks if they tell me its back, I am sure; but for now, I am not going to future trip on something that may or may not be real.
Its strange, I felt more fear about going to an appointment, a few weeks ago, to the Dysplasia expert at UCSF, than I did going to the CT Scan today. Because there is a ‘tinge’ of discomfort in my butt I thought for sure he was going to tell me that the cancer was back; but he didn’t and told me that everything was looking great. You understand the roller-coaster ride.
I feel grateful that I did not feel fear today and my only concern was the fact that I have had four CT Scans since last March and I understood that each CT Scan is equal in radiation exposure to 400 chest Xrays :+( UGH! ... I am not glowing yet like Edwardo Kac’s glow-bunny; but, I won’t let myself get near any marshmellows tonight for fear I might cook them sensing all the radiation that my body was exposed to today! Its kinda-like, who cares how much radiation I am exposed to by a CT Scan given how much radiation I experienced during treatment. Who needs the electric company now when I bet I could plug a few lights into my butt and they would glow brighter than the glow-bunny. Hey, I am just joking with you because well all need to laugh PLUS I feel happy right now.
Well, to get serious again—- and back into my head, which is where I feel most comfortable when faced with adversity; I have been experiencing the most emotional weeks recently. I have been feeling feelings that were solidified into the core of my nervous system long before I ever began to talk and in feeling those preverbal feelings my life has opened up and the flood-gates of new emotions, richer emotions are giving me the vitality from which the humor arises. Gratefully, I have had the luxury of time to simply sit and be with the feelings; feel them, let them pass, grow, change . . . cry, feel relief, cry some more . . . Cancer has helped me be present within my own life and body. It seems like my part is to feel and breath through these moments, just as I did with the physical pain of some months ago. But most important I am discovering that these feelngs live best when lived and felt with other people.
By living in this emotional space, I have come to further honor, in a new meaningful way, my ongoing relationship with my father, who died in 1985, and with my mother, who died in 1992. Just as important to me, my relationship with Todd is also becoming richer because I feel my emotional vulnerability now that I understand my physical vulnerability and mortality better. That wonderful man said I am more attractive to others when being vulnerable. Throughout my life I have TOTALLY taken care of myself even though I have always desired to be totally taken care of (on some level) by someone else so I could skirt my responsibilities to my own life; but, now, cancer has taught me how valuable it is to have others care and take care of me, especially when I needed them to . . . just as I did today when going to a CT Scan towards which I felt no fear. RIGHT! Denial like I shared a long time ago is so helpful sometimes.
Cancer and all of these recent experiences have amplified the mystical nature of my life and too many coincidences are happening to me now that I recognize these insights as meaningful in some way beyond my conscious understanding. I sense a new power and vitality given the fact that I have had to look more closely at my own death. I cannot help but sense the non-linguistic intuitive life I am living now that resides somewhere beyond this physical plane. Consequently, I am aware of how much I want to be outwardly directed towards others that I am approaching strangers with what I can only sense as a spirit of love. My doctor, the phlebotomist, strangers on the bus, people waiting in grocery lines, . . everywhere I want to connect with others simply because they are alive and sharing the planet with me for this very short limited life. It seems like the deeper I go into my heart, emotions, body, core, depth the more willing I am to reach out and build bonds and tells friends around me how meaningful they are to me. I live in San Francisco so I have to be somewhat careful with the stranger-than-others. I AM using some discretion.
I wasn’t able to live like this before cancer came into my life. Its so cool to feel this way that I hope that these feelings doesn’t end too soon as I know, from experience, that All passes and I will go back to a less novel way of living someday; but, until that time comes I hope I get touched by more people than I can handle in my vulnerability, both physically and emotionally, because I am discovering that I am loved through and through. . . and despite how corny it sounds, this love unites us all regardless of where we stand in our diagnosis and treatment. . . and that love had to start from within. Many of you are experts at this as I can see in each of your lives and posts; and now I think I am beginning to understand what we share in common that is even more profound than the cancer we share.
Thank you so much for taking time to read this. Your presence in my life through reading these words is felt through time and space. I appreciate you so much for being here.
I will post more on the book, LIFE OVER CANCER sometime again soon.
Happiness and Love is Contagious: 6 Month Post Treatment CT Scan Today and LIFE OVER CANCER, 
5 comments)
November 23, 2009
I was told today, by an anal cancer / HPV expert doctor, that my butt looks great and is healing well after treatment. Whhhhhhphhhhhhpphhhhhhhphhhhhhhhhhhhhhhhhh ahhhahahahahahhhhhhhhhhhhhahhhahhahhahhhhahahhahhhhhhhhhhhhhhhhhhhhhh
Was that an emotional roller coaster ride leading up to having this appointment. I have read what you all have said and now I understand first hand… wooooah… you are all blessed in going down this road together. It is emotionally taxing to have information about our bodies pending, not knowing—- the time leading up to the appointment is emotionally difficult. I found that that discomfort came out in many different ways but I was able to get through it until today. I experienced various emotional moments . . . . an exercise that strengthened me in so many ways… a purgatory of sorts … up until today’s news and “confirmed” four month new lease on life. YESSSSS! .. My doctor said that everything looked great—he also took a culture of cells as a biopsy and said they will give me a report back shortly. He commented on how lucky I was to dodge this bullet.
His observations were done under a microscope (which I intently watched on the computer monitor in front of my face)—he swabbed the deeper inside with vinegar—a solution that causes suspicious tissue to show up white. which the tissue did not…. by the way, none of this procedure caused any pain whatsoever….. seeing was amazing remembering how bad it felt only a few months ago…... Seeing all of this microscopic details close up of my insides was fascinating for me as an artist, what I was looking at was soft, .... life infused tissue, It looked really healthy to me and I sensed how very precious, powerful and pure our bodies are in and of themselves – - – .... I felt relieved and good…. as I laid there hearing my doctor say how great everything was looking. After feeling fear about what other outcomes he could have stated, what he told me had even greater impact because of the contrast of emotions I previously felt: fear, concern, anxiety wondering if the cancer came back after treatment or not …. well, so far it hasn’t …. and I will sleep well tonight.
I told him that I keep a lot of tension in that area and I wondered to him if this might have an impact on new cancer growth and he said, no. that its a virus causing the cancer, HPV, nothing else. I appreciated knowing that my body has room to move and grow in fascinating ways before I die.
Of course, at 55 this is such a gift to think and wonder about death. . . it won;’t be the last time but for now, such thinking can take a reprieve and I can look forward to the vision of what my happiness is about: home and family. .. .. and teaching and making art of course. So, in honor of the gratitude I feel in my heart that I am healing well and being able to share this great news with you this particular week means so much to me.
Frank
hi, frank. so glad to hear that you have your all clear from the dr. wonderful words to hear. i will pray that you keep right on hearing those same words for many years to come. we need artists in this world to show us less artistic people all the beauty we would otherwise miss out on. have a very nice thanksgiving. keep the faith. debby
Posted on Frank—
Thank you so much for giving us this update. What a relief it is to know that all is well with you and that you scored high marks on your exam! Isn’t it amazing, when you think back to how things were towards the end of your treatment, to see how far you’ve come! I know you are happy to get that new lease signed and now you must go out there and make the most of every day! Yes, there will be more tests and more leases down the road, but right now is not the time to dwell on that, but to celebrate being alive, healthy and happy! I trust that Todd is still taking good care of you and I thank him for that. Please give him my regards. Continue to be well, Frank. I always tell my husband that I don’t have any choice but to take care of myself—I’ve got a $500,000 ass and I’m not about to let it “crap out” on me now! :) Love and hugs to you and Todd. Please keep us posted in the future.
Love—
Martha
Posted on Hi Frank,
That is such wonderful news! Congratulations on NED. I am so happy for you. The more people that come back with good reports, the better I feel. We all deserve to have good news. Take care my friend and keep us posted from time to time about how you are doing. Again, I am so happy for you.
Nancy
Posted on What a wonderful post. Such fabulous news. you have come a long way baby! Time to celebrate now. I got your comment about the book review. Could you post some of your thoughts on the blog. I think they want to drum up a little pr. If there are some thing you only want the author/publisher to see then send me an email and I will send it on to them. Thanks a ton!
Posted on I am so happy for you and your good news! I am in that waiting period right now and it is very difficult. So many emotions, fear and what if’s. It is good to hear good news it give’s me hope and lessens my fear! Thank you for posting your wonderful news.
Hugs,
Eva
Posted on Congratulations on your great news! You have been so supportve to others in your situation. Whenever I see a post from someone newly diagnosed with anal cancer I know you will be there every step along the way with them. You never hold back and just tell it like it is, so they have a very clear understanding of what to expect. You are able to provide much more info than their docs ever could. You are an inspiration and I pray you continue to get good news!
Posted on Hello Frank,
I am new on here and completed my treatment for Anal Cancer on the 29th of August. I’ve found all the struggles you have but I didn’t find the words as you have to describe them and I must admit, now that some of the experiences are past, I could not help but laugh hysterically at the way you have described some of what you went through, that I have also experienced.
I am now 3 months out, I still take one pain pill a day – Morphine 10MG M-eslon which is the long acting kind. I still can’t deal with the pain that lingers after I’ve been to the bathroom for, on some days the 15th time. I am working on a high alkaline diet, but I also find it difficult not to give myself a treat a day and that does involve sugar… I keep it as small as possible and I test for acidity 3 times per day.
I am going for an MRI on Tuesday coming up, I don’t feel scared of the MRI, save and except for the fact that I have a hemorroid, and I am imagining that the MRI will say it is cancer, or is it the other way around? I don’t know, so yes, I guess I am frightened of what is to come over the next several weeks.
But I wanted to say thank you for sharing your thoughts, they have distracted me from my own fears and given me a reason to smile at the similarities and taken away the aloneness in my experience of this disease. I will continue to look for your new posts and hope for a book(let) to come out soon in your name. You are a good writer and I appreciate each moment you took to share your experience!
Warm Regards
Deborah
Posted on Hi Frank, glad to see you on again. It sounds like you are doing well and I am so very happy for you. Would love to see you on my next trip up there. I’m a little freaked out right now. I saw Dr. Barry and everything was good, but then did my 3 month PET scan at the end of October and things are not clear as I’m told. Not sure how to even look at this, but the SUV before I went in for treatment on a PET Scan was 5.5, and this last time it was 4.4. I have heard that to be with no cancer it should be a 1, and anything above a 3 is for concern. They want me to come back in Jan. and do another one and if it is coming up the same they will do a biopsy. I am wondering if anyone else received these numbers on a PET scan and what it means. I don’t feel like i’m getting many straight answers, but no one has told me i’m in remission. I’m just praying that it’s just still inflammation (last treatment was 7/25, but it’s scary for me now. I will keep in touch and give you a call sometime. All my best to you, Colette
Thanks for your support - 
Hey Butty,
Thank you for your post. It has helped me more than you know. I really needed it today. THANK YOU! I’m praying your ct scan is good news.
Tammy :-)
Dear Frank—
As always, when I saw there was a post from you, my heart raced. I knew it would be one of deep thoughts and reflections, and I was NOT disappointed. I love your writings and always come away with the desire to look more closely at my life, hoping to find ways to make it even better. Thank you, thank you! I’m so glad to hear that you are doing well, that your relationships are better than ever, and that you are enjoying all life has to offer. I also want to wish you the very best with your CT results. I am sure you are going to get nothing but great news, especially since you have had a recent follow-up exam and all is well. I hope you will share your good news with us. I think of you often—everytime I hear SF mentioned on TV or read something about it. As always, I continue to keep you in my thoughts and prayers. Please say hello to Todd for me!
Love—
Martha
Frankie!
God, it was so good to see your post and comments to me today when I really needed this so much.
Okay this is going to be a long comment…sorry but I know you’ll be patient.
I am happy to see that you have found another kind of camera lens to view life by engaging and opening yourself more to all of the wonderful things that make this word. I do get it….really I do. I’ve experienced an appreciation for so many things that before would have gone unnoticed. I often liken my life before cancer as like the man in the Metamorphosis…you ever read that short story? Someone whose life was as unmeaningful as a cockroach. I know, a bit extreme analogy but how I’ve felt about my life before cancer, now looking back from the Other Side. I was just going through the motions…not very happy, not appreciating what I had…kinda numb.
I plan on looking for your PBS show online tonight and watching it. I agree that this is a good time for me to do so. I’ve had a hard time over the holidays, waiting to see if this chemo was working and then the scan. I kinda fucked up what I should have been doing…grabbing onto and savoring more of the precious moments with my family, instead of thinking about ME< ME< ME! How selfish!
Frank…you said something a good while back that has stuck in my mind and I re-read it often.
“Being an artist, I know that in order to create light in my paintings that there must be some darkness to contrast with the light – – – and I guess in understanding this, I approach life with the same feeling—that the darkness, the pain, the travesties and injustices, we see all around us, can be transformed in our sensing that such contrasts helps create more life and love.”
Don’t remember if it was in a post or a comment…but you are so right…the darkness accenuates the light. And when I see darkness (fucking cancer) creeping up on me, I need to keep my eyes on the LIGHT! Even though it just may be a tiny speck, a flicker that is there out of the corner of my eye…I need to see that and appreciate that it is there in my life. You also have observed that it really doesn’t take much to find that speck of light. It’s all around us, isn’t it?
I’ll get through this..somehow…and with people like you I’ll find the light.
Big Hugs to you and blessings.
Teresa
Dear Frank, what a great post. I just read through it and a few others as I have been badly neglecting my friends in this community (thankyou for the email yesterday and the sentiment expressed). I am so glad to hear how content you sound! By the way I am doing fine, starting up not one but 2 new businesses so 2010 will be a hell of a year I hope…in a good way!
Best wishes to you and I’m looking forward to reading that blog you mentioned –
Sean
Hi Frank,
WOW! That was a powerful post. Thank you so much for the wonderful view of what is going on in you life now. You are right we all share more than our cancer. Positive energy coming your way for great results on your CT scan. I know you are going to be fine. Take care my friend…I am happy to have you in my life!Hugs
Nancy