Archive for February, 2008|Monthly archive page

Further On Well, What a Change

So, I didn’t expect it but today finds me on the path to my next chemotherapy. I guess it started on Saturday when I just felt, bad, stale, stayed in bed most of the day. I went out dancing at night, but couldn’t move much, might have been me, might have been the music – most probably me. However Sunday was horrific, I spent the night writhing in pain, I must have taken at least four of my painkillers before giving up. I was throwing up this thick greenish black stuff with coffee grinds in it (well, thats what it looked like and I got several chances to look up close). First thing Monday morning I called up and asked for a doctors appointment, sorry they said “the doctor is busy” you can’t see him until May (!!what!!). So I asked for an appointment with a nurse, who called me back first and actually got me an appointment with the doctor that day (see, its all a con).

Forward Into The Past

So I crawl into the oncologists office. At this point I have taken another couple of painkillers and these kicked in so I’m feeling vaguely human. Still, once in the office I start crying while talking with the doctor. He did explain some things for me. The pain, why it was so incredible – and was this the start of another stage of my cancer? This terrified me more than anything. The doctor told me that it hurt so much as one of the tumors in my liver would occasionally press against a nerve ending in the liver. Made sense to me. I asked the doctor how long he thought I had if I did nothing “months or years” was his rather vague answer, but it made me happy, even if death is in your future its a lot easier to face from a distance. Anyway, the pain had weakened me and when he broached the subject of chemotherapy I went for it. Now I wonder, the scheduler called today to schedule my first infusion which is due to last for four hours. God help me, and I mean that. At the tuition meeting I think I am going to ask the nurse if I can start at a shorter infusion and work my way up, I am definitely paranoid about chemo now. Before I left the doctor prescribed me some morphine for when I have periods like this again, hopefully not for a LONG LONG time.

More Radio More KOWS

So, my favorite therapy is radio, started off with my morning show on KGGV LP, reading stuff from the newspaper and playing big band stuff, nothing to complain about there, I had a bunch of fun. Then comes the afternoon and I am off again to KOWS for my Tuesday music show. The radio station is above a fabulous organic restaurant called Howards so I stopped by before the show and got myself a healthy juice (trying to eat right, all part of the program.)

I am trying to get better each show I do and I think this time I improved on my mic breaks. Kept myself comfortably in the green range and talked quietly. At the last staff meeting (also the first) I met Jeffrey Weissman, who is in a similar health position to myself and is soon to be a DJ on KOWS. Jeffrey is a ‘professional’ entertainer and has his own website, try it: http://www.jeffreyweissman.com should take you there. If it doesn’t let me know. Anyway I met Jeffrey at the meeting and picked his brains for advice about my mic breaks, I could tell that he didn’t really want to go there (I mean you never know how people are going to react to advice even if its solicited) but he suggested I move about less (mic not omnidirectional), don’t be afraid of a little silence, and one other thing that I forget! Anyway the point is I want to learn, I want to get better because I want to get somewhere. Or at least sound good while I’m trying. And Jeffrey, I don’t think I moved about too much while doing my mic breaks, thanks for the advice.

Dr. Slavin Works With Dr. Bozdeck

Or so I hope anyway. My oncologist said he was willing to work with Dr. Slavin, which made me happy and I’m sure Dr. Slavin would rather communicate with another doctor but sheesh this puts the procedure months into the future. Perhaps though that will give me the time I need to up my funds.

Basically All Is OK

OK, I admit it, most of the time I am pretty happy. Even though there are periods of pain for the most part I am a very lucky person, blessed with great acquaintances, friends, fabulous pets and wonderful music. A boyfriend might be nice, but there I go complaining again. Anyway while I am hacking away at this keyboard I might as well put out a request to the universe to supply me with some supportive, loving companionship to help me through these times.

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From the Saint to the Spiritualist Church

Well, after visiting with St. John, there was more to experience. My friend Rob knew of this church he wanted me to visit, they did free Reiki healing and did psychic readings too. This sounded like fun and maybe someone from the other side could appear and give me the go ahead for some treatment that would definately work for me.

So, off we drive to Franklin and Clay and get there just a tad late, we rush in all flustered and sweaty while all around us are quiet meditating people. Rob directs me to this special healing room where about five people stand aside chairs, in the chairs sit people who need healing. I took one chair and enjoyed my session, it was relaxing and peaceful anyway.

After the healing we all went to the main room of the ‘church’ and listened to a story about tolerance, this was followed by the church business, and after that came the psychic readings.

Well, of course I hoped that I would be called, but it wasn’t to be. At one point it almost seemed so, they were talking about the African Savanna and British stuff, and I thought, well the British stuff matches, but then the woman behind me claimed it, even though she didn’t really have any meaningful connection to Africa. It seemed like that all around, I guess it wasn’t a day of great communications, everyone was told to de-stress and all the people called on were already known by the psychics (they would call them by their first names!) It just didn’t appear to be very valid, but perhaps I just arrived on the wrong day.

First KOWS Meeting

Well, at last – the first KOWS meeting happened. There were four of us DJs from KGGV there and about 15 other people who are starting shows. It was an interesting group and there is a lot of talent at the station. My day was made when a DJ came up to me and told me he used to listen to me on KUSF in San Francisco. Wow. During the meeting we all introduced ourselves, told about our programs and talked about some of the things we could do with the station, starting with announcing the April Fools Day Parade which is due to occur on the 5th of April. It is said that it is fun. Lets hope so.

Back to Christine

Well, I feel I am ‘normalizing’ again, less crazy angry Christine and more of the ‘well, thats the way it is Christine’ who is making plans for the future.  I guess that will teach me to google and try to take command of my medical care by reading my medical records, now I know why they put it in such alien language.

Went to Church

That was pretty unusual for me, and a Greek Orthodox church to boot, not usual at all for this lapsed methodist.  The reason was to see a saint, called St. John, who is known for healing miracles.  He is buried at the church and you can just go to the church, put a little donation in the box, then enter into the main part of the church (which is on Geary Blvd.), the church itself looks large from outside but small and almost cozy inside.  The first miracle.  I felt very comfortable inside, stained glass to the right and left, lots of gilting, various podiums with stations on them, and a tower at the top, looking like a separate piece of architecture a high round tower with windows ramdomly attached (it seemed).  St. John was to the right as I entered in his own small shrine.  There were pews at the entrance and I sat in one, looking around trying to figure out what I was supposed to be doing.  I saw a man lighting the candles around the church, another man was spreading incense as he walked around the church and the third was singing meditatively (I’m sure theres a correct word for it but I can’t get it off the top of my head).  It was extremely peaceful, but at that moment I didn’t feel entirely peaceful. 

So I feel comfortable enough now to go to see the saint.  Up I stand and walk over to the side of the room, walk up the little steps to pay my respects.  Some people kiss the floor but that doesn’t seem right for me to do, so I spoke some respectful words to St. John  – asking him if it was ok for me to approach him and ask for help.  It seemed I got the OK so I went closer, seeing the naked hands of the saint, embalmed, dark dark brown hands.  As I started asking for help (which I didn’t do out loud) I started crying – something I don’t do at the drop of a hat especially at my age.  I asked the saint for help and felt some kind of response.  Who would dare share these feelings, am I nuts to think a dead saint could heal me?  Or am I nuts to allow some doubt to enter and maybe spoil the process?  I don’t know, but this stuff all goes through my head, but mostly a feeling of being accepted and cared for went through me.  I stood there for  a few seconds, said “Thank you” to the saint and went back to the pews.

Once back I felt so relaxed and almost like I could testify to a miracle, even if he didn’t cure me he moved me in the style that a wonderful piece of music would ‘move’ me, changing my mood drastically.  I spent more time taking in the church and its cozy beauty, in fact I almost fell asleep (it was about 5 p.m.) sitting up!  Out of calmness, of course – not from boredom or tiredness.  A few minutes later I felt moved to go and see the saint again.   This time a smile glomed itself onto my face and I felt happy, who knows why?  I certainly felt that something happened and hope that the saint has been good to me.

Then to Home

After the second visit I left, talked with my friends brother, who turned me on to the saint after the saint had cured his sciatica.   I recall my aunt who was cured of an ongoing (for over ten years) back problem that the medical authorities had wanted to give her a body brace to help with.   It was a pretty bad back problem.  For a couple of years my aunt had been getting help doing housework and other stuff difficult with a bad back, from her neighbor.  The neighbor suggested one day to my aunt that my aunt visit her church’s faith healer.   My aunt wasn’t (and still isn’t) a woman of orthodox faith and yet two hours after visiting the faith healer, her pain went away – never to return!  And she still doesn’t go to church.  So, I see no problem with adding the saint to my list of possible cures for cancer.

I Got An Email From Dr. Slavin

There is was!!!!!  Gasp I said as I opened my hotmail account (before it started acting up) and there was the email from Dr. Slavin that I had been waiting for for several weeks.   Would he accept me?  I opened the email, to say I was nervous was just not good enough.  So, I open the email and start reading and the first paragraph he mentions that he needs more updated records, only having my PETscan from April of last year.   This pisses me somewhat as I went out of my way to give the people his address, phone number, fax number and email and they said that they would send the info along.  But, they also said they would send a copy to me and they never did.  So, I faxed off a copy of the radiologists report to the Dr. and will have to go by the oncologist’s office to get a copy of the CD that they put my PETScan on.   They did this before when I went to Daniel Dunphy in S.F., they said ‘no problem’ and then didn’t do it.  When they sent me to a physical therapist – they got the records out to them and that was just for my neck – why not send my records to actual doctors.  Nag nag nag, it just seems unjust and just not right and other things with just in.

Onward I go

Well, I swallowed my pride and called in the doctors office to get some pain meds.   It was pretty easy, just left a message with the nurse practitioners and they called back, asked how things were and voila a prescription from the Doctor!  And boy did I need it.  Because it was a narcotic I had to drive an hour to the office to pick it up (they suggested mailing it, can you imagine waiting four or five days for your pain meds, sheesh!).  

The drug is Endocet and works well, mostly, but I worry now that I will be on painkillers all the time.   Usually I wait until the pain arrives before taking meds but this time the pain is just too enduring to do that and when I don’t take the meds I can feel the pains coming back.  Its very frightening.

Talk It Out

I guess I should have asked the nurse what this pain means, whether it could go away, and how soon might it get worse.    I suppose I am afraid to ask, when I have these pains I feel that I must only have a short while left to live. 

Oh well, wrote to my PD at KGGV and asked him to let me know if I sounded like I was on drugs on the air.  Have to have some dignity!

Dr. Slavin wrote back

Well, I still don’t have a prognosis on whether Dr. Slavin will take me on or not, but I wrote to him again today because I haven’t heard from him for two weeks, and he emailed back to say that he would get the answer to me (via his secretary) early next week.  Hopefully I can stave off paranoia till the email arrives.  I am so excited, so nervous.  And, believe it or not I have about a third of the amount of money I will need to get treatment by the Doctor, thats a miracle in itself!

Getting Over It

Well, its been a few days now since I’ve had my new diagnosis and I’m trying to digest it and not get too bummed out, that won’t do any good.  So Monday I had a meeting with my oncologist, he went over my medical records (not all as I found out) and sugar coated it a little, saying it was growing but not really fast, with extra tumors in the lungs, definate cancer now in the pelvis, but thankfully my liver is ‘stable’ as they put it.  He suggested another kind of chemotherapy called Erbituz, I haven’t googled it yet but I’d guess its kind of yukky.  I asked doc about Vitamin C and Vitamin D and he says that Vitamin C doesn’t really help, and Vitamin D might help prevent but no more, I asked about immunology and he mentioned they were doing something like that at Stanford, that the first patient had great results but the next 19 didn’t as the tumor learns to change before the vaccine gets to it.  I don’t know, I wanted to draw his attention to the figures on chemotherapy – not too heartwarming – but didn’t want to make it into a full fledged argument as it was working its way in that direction.

What Is This?

I asked for a copy of my PET Scan when I left my doctors office, and when I got home I started reading it and making use of google.  Well, did I have some sort of surprize waiting for me.  Of course there was peritoneal carcinomatosis which is a lot of cancer in the abdomen, I googled that and it said ‘considered terminal and end of life situation’ yowser I hate that language.  Actually it said that these days they can help by ‘harvesting’ the foci I guess, though with all the stuff I have going on I can’t see that happening.  Then under the section called ‘other’ I saw this: a fair amount of air is present in the vagina, which may be incidental though the finding does raise a possibility of some type of colovaginal fistula.  What is that?

Oh My God

So I google this, and can’t find colovaginal fistula, but find out what a fistula is (an abnormal connection) and read in Wikipedia about rectalvaginal fistula which is an abnormal connection between the vagina and rectum.  Shucks, so I guess the colovaginal fistula would be an abnormal connection between the colon and the vagina.  Lovely, just what I always wanted.  I’m a freak.  Actually it makes perfect sense, ever since my radiation things have seemed a little weird down there, there were times when I thought that my pee was exiting from my vagina, and incontinence is a close companion, even Kegel exercises didn’t help – and this would explain all that, including the urinary tract infection I had a week or so ago.  I expect that will be a regular occurance for me now, or so it says in Wikipedia.  Wish my doctor or my nurses had mentioned this and gone over it with me, I’m disappointed to say the least, its not like I’ve never mentioned troubles with my vagina to them.  Oh well.  This reminds me when I first had my cancer diagnosis and signed up for a support class, at the first one I heard a story of a women whose sister had radiation  which seared the vagina shut and she had to have surgery to fix it, makes you wonder how often this happens.  The Wikipedia entry said that a lot of problems occur because women are too embarassed to bring this problem up (you don’t say) and their bodies get weak from recurring infections.

KOWS

So on the good side I went and did my first show on KOWS yesterday, and had a blast.  I doubt that more than 5 people were listening, but who cares, not me, I loved listening to all my great music over good speakers, played stuff like “In The Nursery” Bill Laswell, Captain Beefheart, Chemical Brothers, Scenic, Lanterna and lots more.  You really missed a great show there!  Well, at least something is going right in my life

Dr. Slavin

Got an email from Dr. Slavin last Thursday, he now has all of my records and is getting ready to do his consultation.  I am trying not to get too anxious about this but can’t help myself.

St. John What Can You Do

It seems that there is a dead saint in San Franciso at a Greek Orthodox Church off of Geary Street that can perform healing miracles so what the hey I think I will try that too.  I believe on Wednesdays around 5 p.m. you can visit the saint’s coffin and touch it.  The brother of a friend of mine has suffered from sciatica for 18 months and he kissed the coffin and lost all pain from the sciatica, he is convinced it is a miracle.  And miracles do happen.