Archive for the ‘Uncategorized’ Category

Keeping at it still

Well, it seems like the good times come and the good times go.  Most of the time I stare at the walls and wonder when I’ll have the strength to move around more.   So far Cathey’s hypnosis has worked best of all to stem the pain, although I only use that occasionally.  Cathey only charges $75 a hour for her work which is more than fair.  I’ll add in her website reference next time I get on.  Yeah, I said that last time, but hey I’m pooped 85% of the time.

New Doctor

Well, at last I sign up with Dr. Issah Eziah’s (sp?) office in Sebastapol.  I ask them if they have anything that they might offer me as treatment and they suggested Vitamin C and K infusions.  This is pretty stock treatment and has some good figures behind it, however it costs $250 a treatment and they want me to have two treatments per week, on an ongoing basis too.  No wonder people don’t follow alternative treatments, thats $26,000 a year!  Yikes.

Dr. Slavin

I asked them about Dr. Slavin and whether they had heard of him.  Not only had they heard of him, but were already prepping various of their patients for treatment by the doctor.   All I have to do it to get a current petscan so that he knows my condition (which hopefully is not too bulky for him to work with.)  We will go from there.  I live in hope.

Hypnosis Another Step In The Right Direction

Well, yesterday was a big day for me, the first day with NO pain whatsoever, admittedly there are those 145 whatever morphine patches I am wearing, but even with those I have been having severe abdominal pains that I blame on gas.

Remember Hypnosis?

And how I wanted to try it out to manage the pain? Well, I got an irresistible offer of a session from Cathey Ragucci of San Rafael, I was to call Monday evening at 7 p.m. and we would see if this could help me manage the pain. Well, 7 p.m. came on Monday and found me asleep, not that I had completely forgotten the meeting, but the pain had been so intense earlier (around 5) that I asked for some of my muscle relaxants which put me to sleep. But Cathey persisted and called me, woke me and I washed myself with a cold washcloth to wake myself up, then called her back.

What Was It Like?

Well, very normal it seemed, and relaxing, I just lay on the bed with the phone aside of me and listened to Cathey speak to me about my getting into my body, finding and then describing the pain, then as the pain got less recognizing the ‘look’ of that lesser pain and it worked well to lower the pain. Well, perhaps I’m not the best at describing hypnosis, it seemed so simple there wasn’t too much to describe, I really enjoyed the experience and it was very relaxing. The session was repeated for the purpose of getting a recording that I can re-use which Cathey said she would send me. (Hopefully Cathey doesn’t mind my giving her name out here as she has her own website (which I will link in later.) Later I went sleep practically immediately and my brother said I was sawing logs all night long (good for me.)

It Surprized Me The Next Day However.

When I woke up with NO pain whatsoever. And full of energy. When I say that I mean that I walked around downtown Guerneville for about four or five blocks with no tiredness and no shakey legs (although those things are still way too boney.) After walking around downtown I also went to Pat’s for breakfast and had an omelette which was incredibly delicious; bacon and smoked cheese. So strange that for almost all my life I have been 90% vegetarian but these days I crave meat. Go figure. I had fruit too so I got my carbs and some good food in me, hopefully I haven’t lost all of my nutritional sense! Thank you Cathey, you have done me some favor!!

Simon the Spoilt

Donna from Pat’s came around this morning, bearing roses for me and sausages for dog Simon!!! Could you believe, she had to get her ‘Simon’ fix, Simon was overjoyed to see her and showed it by running directly to his bad of sausages. I love this town and thank God for leading me here, Guerneville I couldn’t have done it without you (and some outlanders too).

I’m Still Out Here

Just in case anyone is left out there wondering (its been such a long time since I’ve written my blogg); I seem to have arisen from those slimy slumbers of morphine and am back in the land of the living.

.Its one in the morning here in Guerneville and it seems like months now I have been struggling with pain, losing mammoth amounts of weight and not having the energy to hold a coffee cup for a few moments. Sheeesh, people shouldn’t have to go through this. And you know what I don’t think I will anymore. As of today I feel I have reached a turning point where strength is concerned and I am ready to fight again.

Where Am I Anyway

Well, now I am part of the hospice service which is a curious thing (hospice I mean). It’s, to put it simply, based on accepting your passing and allowing them to medicate you so that the pain is controlled and life can be lived. For me its more a place to go to to rest from that terror that was chemo. Its a better system. I have one nurse, one social worker and also various aides who come to wash me, there is a chaplain available also and I was able to meet with him once already. I like this guy. I didn’t want any bullshit so I told him that the truth was that I wasn’t accepting my death, that I wanted to and was planning to live and wanted some counseling on that order rather than just tidying up my affairs. To my joy he seemed very very happy to hear this and expressed that it was a joyful decision as he was hearing it. Wow that was freeing, when he left he actually asked me whether he could research some other alternative healing techniques for me, well .. . could you ask for better than that?

Well I already had better than that anyway!

Yep, I sure had, listen to this. It got really hairy with my health, like I was really on the edge, days from death, many people spoke to me about this, how weak I looked. My parents had to be told and my brother John who is now living with me (yeah!!!!!!) did the deed. It shocked them and it was the last thing I wanted them to hear but it was getting late. John told them both that I was sick and also broached the subject of my smoking medical marijuana, I just never got the guts to tell them as . . . well, you know how that goes. But while I was trying to adjust to the correct morphine dose to control my pain I used both the morphine and medical marijuana to control the pain. The marijuana worked better, faster (like immediately) and I could stand up and walk around and communicate, on morphine – no way. The MM also helped with constipation, (sorry) and anxiety. It was apparent to my parents instantly that this was the better way. But they had already accepted my smoking it before seeing the affects and this is what I really love them for. Thanks mum and dad. This was so healing it was uncanny, it was the only secret I had and was such a joy to throw off. I am so happy. My sister Mary is also visiting me from Florida, sacrificing days off she hasnt even earned yet bless her and giving me six days away from her two dogs also. Thats love. Thank you Mary.

This is the cure for Cancer

The cure for cancer is love and support in big gobs. Let them sue me for saying it. Because I know my fabulous support system from Share the Care to Radio to Church to Family are responsible for this turnaround. You gotta eat good food too, no joke, seriously get into your refrigerator and get natural food in there for your own life’s sake.

Getting Better All The Time

Well, thats what it feels like anyway.  Getting better, today is Saturday morning and I’ve already been out to Pat’s to eat.  Love going to Pat’s for breakfast, ordered the poached eggs with toast and a little fruit.  This is good for me but it was hard to eat it all, Simon got most of the toast but I ate the rest.  The pain seems like its gone for good now, but the nausea and body malfunctions remain so this Monday I am going to go to the Health Center and see what they think. 

Share The Care

This group has been an incredible boon to me and I think the main reason I am feeling better now.  Thanks to my Share the Care group my house is clean, my laundry is washed, there is cooked food in the fridge for me to eat and Simon gets walked, plus the extra time I spend with people, that alone has given me immense strength.  I am incredibly lucky to be this person receiving this help, incredibly.

Chemo Off Again

Well, I went off for my weekly chemo on Friday but when I got there the nurse said that because I had requested Hospice care that I couldn’t do chemo too.  Well, that threw me for a loop for a few moments until I realized that earlier this week there had been a meeting to organize my ‘final wishes’ about my care.  At the meeting Hospice had been mentioned and I guess people had followed up by contacting hospice, but to do this they had to talk to my doctor, who signed off on the hospice care!  Well, my wish had been granted, out of chemo for another week.  We spoke to a nurse about the situation and it was decided I would out of chemo this week, speak with hospice, then maybe let hospice know its too early for me (if, indeed it is) and go back to chemo next week. 

Went out to eat Kung Pao Chicken after the cancelled chemo, it tasted great.  Maybe I shouldn’t have though as it came back later in the evening.  Wonder why the pain has gone but the nausea remains? 

The Gathering Happens

Well, Monday came around and my big meeting/gathering is to happen, but I felt awful physically, taking morphine only dulled the pain, I was vomiting and just felt so weak that I called Beth early afternoon and told her I wasn’t sure I could make it to my own meeting! Beth ran to the rescue and called Pam who came around to sit with me, then Beth arrived and we shared our company for some time. Just having the company felt good, there was an opportunity to give my attention to something other than my body and its pains. It was decided that the sensible thing to do was for my to rest and allow the meeting to go on without me as I healed at home.

How Could I Do That?

So, it was the right decision, Beth said that I would probably get tired just from getting dressed and I knew just what she meant, so I made the sensible decision and Pam and Beth left to organize the meeting more as I snuggled back into bed. It was after 4 then and I lay down and relaxed, feeling so much better from just having the company. I lay and thought and wondered about this meeting that I had looked forward to for so long and so many times, and if I didn’t get to this meeting when would I get another opportunity?

Well, I convinced myself to give it a try. I got dressed, well – that wasn’t too bad, didn’t get too dizzy so I thought I would call Noel and see if she could pick me up, but the cell wouldn’t pick up. Then I thought I would just go for it. I would walk, with Simon, down to the resort. If I made it and was too tired then I could get a ride back but if I made it and wasn’t too tired then I would have my gathering!

Gathering Awaits

So there it was, the Boathouse. It took some searching for; that New Dawn resort is a lot larger than I knew. But the Boathouse was found, attendees in place and me there too . . . not too tired, in fact a little hungry, in fact very hungry! But I waited for a while. I looked around the room and saw some people I knew, other people I had never seen before and wondered again about the beauty of the human spirit, I almost didn’t want to make eye contact I felt unworthy. The gathering was in process when I arrived with people speaking of how they felt, why they were there, what had led to their being there. For me it was very moving and I looked around the room at all the wonderful people who had volunteered to come and help me on this strange journey I’m on. How can you just say thank you for that? What can you do? I am going to open myself up as much as I can so we can all become the big family that I know we all need in our lives, I want to like and love to the fullest, not just politely, I want to warmly welcome all of my new family in, not politely tell them “perhaps another time” a love that they are showing deserves the best that I can give back and I am going to go for giving quality to my new gang of angels.

So Much Was Done

So, indeed much was done at the gathering, the way the system works was described, then people listed their talents and times they were available. It turns out that I have people willing to help me with: laundry, housecleaning, driving to chemo, massage, insurance, cooking, walking the dog, and keeping me company when I am getting cabin fever. We talked about my cancer situation, some of which I am completely unsure about. My friend Robert made a good point when he mentioned that we were spending a lot of time talking about my dying, and he didn’t think that I was ready for that yet. This was good to bring up, because in some ways I feel the same as Robert. However, after at least three weeks of abject pain I have had to look a little closer at my mortality and while this could end up being an infection from my uti bugs and just go away (that would be wonderful!), this also could very likely be the cancer in my torso they mentioned in the last Pet Scan. I have to admit thoughts of death came to me many times in these past few weeks – that I was at a near-death situation, the pain was just too inhumane. Now I look in the mirror and know that I better take care of my paperwork while I still am conscious enough to! And believe me, I have a smile on my face today because I have a new gang of angels who will help me through this. I am praying for remission though, that is what I want – but this darned cancer just loves me and has a hard time leaving.

Today is Thursday and I was hoping for a third day free of ‘hurling’ but today had me throwing up about three times, and I missed my eating window also. I woke up hungry but lay in bed so my appetite left. Never mind, I definitely feel stronger than yesterday, but I have a ways to go and I know I am still losing weight.

Oleander Some Official Stuff

http://www.tbyil.com/HIV_Clinical_Trial.htm

This is the link to a page which speaks some about oleander and its effect on patients with AIDS and Cancer. If you follow through the links and read the trial (the parts you can understand) it shows some amazing statistics. Almost too good to be true, but lets not get cynical here. These days I do have a respect for Clinical Trials.

I have only just started taking Oleander, and its suggested that I should see some effect within 60 days. I don’t immediately feel anything but, for me, thats a plus. Usually my medicine tastes pretty foul.

Getting That Liver Cleansed

Well, before I start on the Oleander I had to do the liver cleanse. The first three days all I had to do was drink an extra litre of apple juice, then the fourth day I didn’t eat after noon, and took epsom salts, later on I had to drink a mix of olive oil and organic grapefruit juice. I expected some violent reaction, but nothing like that at all. In fact I hardly noticed anything, but anyway I’m glad I’m cleansed. The epsom salts were pretty gross to drink, I thought the grapefruit juice with the olive oil would be worse, but it wasn’t

Pains Are Less

So, I’ve been trying to take the high path as regards my eating. Having noticed that when I eat food that is not too good I get pains. I tend to have a big breakfast these days as that is when I am hungry. I have to work on some of the other things the doctor (who makes the oleander) recommends. Lower stress, get rid of old resentments, drink plenty of water, eat lots of fresh vegetables and fruits, get to bed before 10:30, plenty of sunshine and exercise. I am just hoping that this works for me. Lets cross fingers.

The Marijuana Man

I think that is what he called himself. In my never ending pursuit of the latest in cancer research I heard about Hemp Oil (not Hemp Seed Oil) which can cure cancer. Even Andrew Weil recommends it, but the federal authorities don’t, so the guy who promoted this (there is a video about this on you tube showing how to make the mixture) got fined and closed down. He said though that a 90 day supply would be enough to cure any cancer. That 90 supply still costs $2000, which is cheap though in cancer-dollars. If this is true and it can cure cancer then its pretty wicked of the authorities to hide that from us.

A Little More Hope

Well, yesterday was pretty much both up and down. I started off the day early by heaving the bad food I had consumed (a combination of teriyaki and ice cream), out of my system.  This went on for a while. Eventually I got some rest around 3 or so, got up at 6 to do the show at KGGV, took some anti-nausea drug – under the tongue – and walked to the station. After a few minutes in the studio I started to get nauseous again and heaved three times into the bushes outside of the studio. It was a toss up whether to stay and do the show or go home and go to bed. I chose to stay, I figured I was going to go for chemo a couple of hours later so I wouldn’t get too much extra rest, anyway I might as well enjoy myself while I can.

At The Clinic

I drove to the clinic, feeling shivery and cold and told them I didn’t feel so well. Of course, they take my vitals which were wonderful – my blood pressure, temperature etc. not a problem, it doesn’t look outwardly that I am sick. But, the Nurse Practitioner got the results of the blood pull they take every time I’m at the clinic and she told me that I must be fighting something off, because my white blood cell count was very high. This is an unusual sign in my situation and a very promising one. The Nurse Practitioner suggested too that it was time I got further checked to see how my body is, she told me that my blood count figures (all of them) were wonderful. Ct scans are being ordered as they thought that it was too soon after the last PetScan to order another one (that it would take weeks to get approved) so it looks like I have a couple of ct scans in my future, but I’m excited, I think that the work my medicine man has done on me has made such a difference that I will be able to see it on the scan. Anyway the best part at the time was that I was ‘excused’ from doing chemo that day (yeah!!), but thinking back of course the best part is that my body is acting like a healthy body!!

Back To My Medicine Man

I need to touch bases with my medicine man, I’ll call him in the next few days for another follow up. I worry that his dad may have died as he was close before, however I’m looking forward to telling him that my blood work looks so good.

Chemo Causes Brain Damage Now Its Official

Well, they have talked about this over and over, whether “chemo Brain” is real or not. Now we have proof, although we will have a wait until anyone does anything about this. I guess we should be glad we have part of our brains functioning. The article that covers this follows:

A commonly used chemotherapy drug causes healthy brain cells to die off
long after treatment has ended and may be one of the underlying
biological causes of the cognitive side effects — or “chemo brain” —
that many cancer patients experience. That is the conclusion of a study
published today in the Journal of Biology.

A team of researchers at the University of Rochester Medical Center
(URMC) and Harvard Medical School have linked the widely used
chemotherapy drug 5-fluorouracil (5-FU) to a progressing collapse of
populations of stem cells and their progeny in the central nervous system.

“This study is the first model of a delayed degeneration syndrome that
involves a global disruption of the myelin-forming cells that are
essential for normal neuronal function,” said Mark Noble, Ph.D.,
director of the University of Rochester Stem Cell and Regenerative
Medicine Institute and senior author of the study. “Because of our
growing knowledge of stem cells and their biology, we can now begin to
understand and define the molecular mechanisms behind the cognitive
difficulties that linger and worsen in a significant number of cancer
patients.”

Cancer patients have long complained of neurological side effects such
as short-term memory loss and, in extreme cases, seizures, vision loss,
and even dementia. Until very recently, these cognitive side effects
were often dismissed as the byproduct of fatigue, depression, and
anxiety related to cancer diagnosis and treatment. Now a growing body of
evidence has documented the scope of these conditions, collectively
referred to as chemo brain. And while it is increasingly acknowledged by
the scientific community that many chemotherapy agents may have a
negative impact on brain function in a subset of cancer patients, the
precise mechanisms that underlie this dysfunction have not been identified.

Virtually all cancer survivors experience short-term memory loss and
difficulty concentrating during and shortly after treatment. A study two
years ago by researchers with the James P. Wilmot Cancer Center at the
University of Rochester showed that upwards of 82 percent of breast
cancer patients reported that they suffer from some form of cognitive
impairment.

While these effects tend to wear off over time, a subset of patients,
particularly those who have been administered high doses of
chemotherapy, begin to experience these cognitive side effects months or
longer after treatment has ceased and the drugs have long since departed
their systems. For example, a recent study estimates that somewhere
between 15 percent and 20 percent of the nation’s 2.4 million female
breast cancer survivors have lingering cognitive problems years after
treatment. Another study showed that 50 percent of women had not
recovered their previous level of cognitive function one year after
treatment.

Two years ago, Noble and his team showed that three common chemotherapy
drugs used to treat a wide range of cancers were more toxic to healthy
brain cells than the cancer cells they were intended to treat. While
these experiments were among the first to establish a biological basis
for the acute onset of chemo brain, they did not explain the lingering
impact that many patients experience.

The scientists conducted a similar series of experiments in which they
exposed both individual cell populations and mice to doses of
5-fluorouracil (5-FU) in amounts comparable to those used in cancer
patients. 5-FU is among a class of drugs called antimetabolites that
block cell division and has been used in cancer treatment for more than
40 years. The drug, which is often administered in a “cocktail” with
other chemotherapy drugs, is currently used to treat breast, ovarian,
stomach, colon, pancreatic and other forms of cancer.

The researchers discovered that months after exposure, specific
populations of cells in the central nervous — oligodendrocytes and
dividing precursor cells from which they are generated — underwent such
extensive damage that, after six months, these cells had all but
disappeared in the mice.

Oligodendrocytes play an important role in the central nervous system
and are responsible for producing myelin, the fatty substance that, like
insulation on electrical wires, coats nerve cells and enables signals
between cells to be transmitted rapidly and efficiently. The myelin
membranes are constantly being turned over, and without a healthy
population of oligodendrocytes, the membranes cannot be renewed and
eventually break down, resulting in a disruption of normal impulse
transmission between nerve cells.

These findings parallel observations in studies of cancer survivors with
cognitive difficulties. MRI scans of these patients’ brains revealed a
condition similar to leukoencephalopathy . This demyelination — or the
loss of white matter — can be associated with multiple neurological
problems.

“It is clear that, in some patients, chemotherapy appears to trigger a
degenerative condition in the central nervous system,” said Noble.
“Because these treatments will clearly remain the standard of care for
many years to come, it is critical that we understand their precise
impact on the central nervous system, and then use this knowledge as the
basis for discovering means of preventing such side effects.”

Noble points out that not all cancer patients experience these cognitive
difficulties and determining why some patients are more vulnerable may
be an important step in developing new ways to prevent these side
effects. Because of this study, researchers now have a model which, for
the first time, allows scientists to begin to examine this condition in
a systematic manner.

Other investigators participating in the study include Ruolan Han,
Ph.D., Yin M. Yang, M.D., Anne Luebke, Ph.D., Margot Mayer-Proschel,
Ph.D., all with URMC, and Joerg Dietrich, M.D., Ph.D., formerly with
URMC and now with Harvard Medical School. The study was funded by the
National Institutes of Neurological Disorders and Stroke, the Komen
Foundation for the Cure, and the Wilmot Cancer Center.

For more media inquiries, contact:
Mark Michaud
(585) 273-4790
mark_michaud@ urmc.rochester. edu

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Had a family reunion last week, that was wonderful. My brother John paid for me to go there, thank you John, and also donated a keyboard to me so that I could blogg in comfort. I had used my computer keyboard so much that several of the keys were missing and other keys were not working at all. Now I can type again, freedom! Southern California isn’t as nice as Northern California at all (especially the part of Northern California I live in) but the weather is nice and things are cheaper. Went to the Huntington Library, one of my parents favorite places, and the amount of flowers blooming was almost unbelievable. The Children’s and Chinese Gardens were my favorites. Then to Santa Monica Pier, which I liked a lot, I always loved amusement arcades, went on the mildest roller coaster on the coast but it gave great views of the pier and other amusements. The last time I went on an extreme coaster (at Six Flags) the ride was exciting to the max, but I spent most of the time with my eyes closed so it was nice to really experience this coaster.

Then back to Guerneville and off to the first meeting/event for KOWS programmers, we had pizza/pasta at the Union Hotel and baked in the heat while we got to know one another. The next day one of the programmers (Arnold) invited us to cricket and tea at a park in Sebastopol – that was a blast, had my first taste of gooseberry jam in years, plus the scones with double cream delicious (of course!) many of the Americans on having the rules of cricket explained to them, declared it silly or weird, but after they went to bat they changed their minds, sheesh even with that big bat its hard to hit the ball. A good time was had by all.

Anyway, things have been good for the past two weeks, only during this last week have I felt any pains, and only needed my meds once (yeah!). But I worry because I don’t understand the nature of cancer pain, I will have to ask my doctor again, they usually tell me it could be because the tumors are growing or it could be the tumors are dissolving. Well, dissolving sounds better to me. I want to see my medicine man again though because I believe in him and think he was the reason that the pains went away in the first place. My belly button is acting up again though, no pains, but its leaking greasy stuff and is a very raw red color. Its another two days until I go for chemo again, I really need to talk to my doctor about my skin. This chemo’s side effect is a skin rash, but my whole body has become rough and raw (in places), I hate touching my body as it doesn’t feel very human, my nose bleeds a lot and I’ve started bleeding out of an old hole in my ear lobe, where I used to wear earrings. Its better than throwing up all the time, but I am wondering if this isn’t too much.

,_._

Back On Foot

Well, if its not one thing, its two.  Actually I feel pretty lucky today.  I noticed that I had lost my wallet this morning, spent what seemed like forever searching the house and retracking steps back to Johnson’s Beach.  No luck.  I eventually called in my debit card, but nothing else.  Then, around 5:30 I got a call from a guy at the beach who had found my wallet, no money of course but it was all the plastic that I was most concerned about, its such a pain to replace that all.  And I’m going flying next week and didn’t want to take along an outdated passport as ID.  Thank you homeless guy, I gave him a little something for his troubles and he was happy. 

Who Feels Healthy, I Feel Healthy

I can hardly believe it but I’ve felt relatively healthy for over  a week now.  I have thrown up about once a week, but no violent episodes.  The points on my pelvis which would always ache I haven’t felt for a while, at all.  I think this is due to my medicine man.  My oncologist is talking about trying to get me another PETScan at the end of April, but isn’t sure it would be approved (I guess there was so much cancer, there is no point to look for more.)  Anyway he is game to look and me too, I sincerely believe that something may have happened this time.  Tomorrow I will be calling my medicine man to see how he is and let him know that I should be OK for another week as indeed I think I am, he will then see me the following week for our three week follow-up.

Car Problems

Well, I’ve been driving it all over the place so I can’t complain, but I will anyway.  Poor car started shivering at 55 mph, then at 45, then got so bad I had to take it to my mechanic.  He said it was something about the CV axel, I guess it will be several hundred to repair, but repair it we must.  I have a carbon footprint to keep up here.  Have to get to Andys in Sebastapol, got to go to chemo in Santa Rosa, go to go to medicine man in Petaluma, got to visit in San Francisco.  In the meantime I though I might have to miss my show at KOWS again, but I ran into Leslie who lives uphill (or used to) and offered to lend me her car tomorrow.  So, I took up the offer, I need to get some good food from Andys, and get some more music out on KOWS.  People are so good to me.  Thanks Leslie!!!