Archive for June, 2008|Monthly archive page

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.

A Break In The Clouds

Well, last night I had great pain so I took some morphine around 2 a.m. but woke up this morning feeling wonderful, pretty healthy and ‘in my body’ and so much stronger than I had in a long time -weeks I’d say. To say I am happy about that is a super understatement. So I celebrated by going to Pat’s for breakfast, forgot to mention that an appetite came along with the new found strength. I knew what I needed, very light scrambled eggs on dry toast with a huge glass of orange juice. So I went there and got that and enjoyed it very much, thank you. Perhaps there could have been some health advantages if I had trolled on over to the wonderful Howards, but there is companionship at Pat’s that somehow misses being on the menu but is definitely there for me. Even when I go there and don’t speak a word its fun for me to listen to the banter between everyone else . They always remember Simon too.

This week has seen a couple of visits to doctors. Monday I went to the Russian River Health Center and got tested for a urinary tract infection (trying to find the cause of the pressure in my abdomen). Seems there’s ‘something’ there so I get the antibiotics for the infection and some Prilosec to help with the gas pressure. The doctor mentions possibly an ulcer, that sounds likely to me, but we will see. He prescribes then tells me to come back in two weeks and they will do more comprehensive tests to see what is going on generally with me.

Back To The Oncologists

I’m starting to hate that word oncologist, making me nauseous. Wednesday I got another appointment at the Oncologists and met with my nurse practitioner, after having my blood pulled. They weigh me and I now weigh 132 lbs, this is a bit freaky, always wanted to be slender but haven’t weighed this little since adolescence (and I mean since starting adolescence). I will enjoy the look while I may but it does send out warning signals yelling “cancer” shhhhhh.

Cheryl (my nurse practitioner) sits down and immediately says that they now think that the pain is caused by the cancer – not gas. She read me my CEA levels (readings which show how much cancer is active in your blood) and my levels had gone from 17 to 27, not encouraging, under 6 is normal. So, she insists I get back to some chemo asap, like tomorrow or the day after. I went for the day after but will be there . . . they sure know how to frighten you at these places.

Later I thought that the level change might be because I had a liver cleanse and it shook up my system and the blood pull with the high reading might be from the one after the cleanse (as it should have cleaned some cancer out of the liver) Oh well, who knows, I’m getting so I almost don’t care. I feel like grandma sometimes, always talking about this ache and that pain (not that my grandmas ever did, they were angels).

Getting Used to the Morphine

I had to take some morphine late this afternoon after all. I am trying to be more accepting of this. The pain is there and has to be taken care of and the morphine works on deadening the pain. If I am going to take morphine every day then I want to figure out how I function on it, so I started doing some housework, danced around a bit and just started to act normally rather than lying down on the bed – something I have done way too much of these past few weeks.

So, all in all I still feel great. Maybe I did end up taking the morphine but I managed to operate normally on it and now the morphine is out of my system I still don’t feel any pain.  I think it might be my next assignment to figure out the pain management as I don’t want any more pain.

Oleander Some Official Stuff

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.

That Darned Pain

Well, it seems like the pain might be toning down a bit, but I’m not sure. Today I took about four droppers full of morphine, and still I felt twinges. I wanted to go to the Strawberry Festival that KGGV put on today, its a major event for us and I didn’t even volunteer to help prepare (because I’m feeling sick so much of the time these days) I got up and took a quick walk with Simon this morning. He made the walk short himself, he just turned around and pulled me back home. ‘

I lay around with the computer for a while, around noon I thought I was ready to go to the festival so I walked on down, I made it about a block, I had to lean against the library to compose myself I was in such pain. So I put it off for a while, went back home, lay down, then did some more morphine which did the trick as far as giving me the confidence that I could make it to the festival.

The Strawberry Festival

There was a live broadcast going on which sounded great, very good recordings to whomever set that up. Blues Daddys, Thugz, Peggy Day and the Gypsy Nights, Midnight Ramblers, KGGV All Stars and a trio who were incredibly good and in fact a sextet from someone’s description Greg Hessler I think. And an accordionist who played between sets and was a blast. I made it there at around 4 thirty I think. I shuffled over to the chocolate fountain looking at it lovingly but remembering the mantra “cancer loves sugar” well, that took care of most of the food, but I grabbed myself a few sticks of strawberry kabobs and ate them unadulterated which was fabulous, all organic too, the local health store Food for Humans donated all the strawberrys – thank you Food for Humans. Everyone looked to be having the greatest time, including me even though I did feel twice removed because of the morphine I expect. Got a photo from the Ranger of me holding the reins of some fleeing horses in our Wild West flashback photo stand. I will treasure that.

I spoke to Hunter while I was there. Hunter hosts a show at KGGV about dealing with aids, excellent show. Hunter and I talked about the Mr. Leather contest he attended in Chicago. He came in 23rd in the WORLD. Hunter is 63 but they had the audacity to ask him whether he had a problem communicating with the youngsters out there. What a strange question and it says a lot about the guy asking it. I’m quite sure that Hunter could have spoken to the youngest contestant there about leather alone for 40 mins no problem. Anyway YAY to you Hunter and for speaking out for all 63 y.o.s (how ancient). Spent some time with Robert also at the festival, we talked about the meeting coming up for me – the meeting will be on Monday evening and everyone that wants to be part of the organization to support me who can be there will be there. Robert was telling me that physically he can’t make it, but reassuring me that he will be part of the group. Definitely Robert has been the person in Guerneville that I have been calling when I want someone to do things with. Thanks Robert.


There it is again, thats how it is with me too . . . sometimes nothing then ouch ouch ouch, sometimes I scream what the heck, stop it stop it stop it. And then it goes away. Or I hope it does, sometimes it stays around for hours on end. It seems like weeks now that I have been dealing with this pain and I don’t like that. I doesn’t sound like gas to me but might be some digestive upset. I was going to ask my doctors about it but I slept through my chemo appointment on Friday (I lay down around ten fortyfive a.m. and woke up around five in the evening) It seems that any day after taking the morphine I am sleepy all the time. I don’t like this as its not healthy but I can’t move around with this pain anyway. I think on Monday I should go to my local general doctor and see if I can get a test for a urinary tract infection or something that might explain whats going on in my insides.

Working on that Gas

Well, another day with quite a bit of pain in it. Maybe I asked for it at first, I drove down to Monte Rio to have breakfast at a cheap breakfast place I go to sometimes. I didn’t eat too much; eggs and toast essentially, gave the rest to Simon (dog). Had an orange juice too, that was GOOD. Afterwards I walked with Simon on Monte Rio beach, that was nice – there were many ducks around and Simon behaved himself by not chasing any of them.

Well, so far no pain, just a bruised feeling left over from last night. After breakfast I dropped into Safeway and bought myself some Gas-X. It took a few hours before pain of any amount came on so at that point I took the Gas-X, I mean if this is caused by gas then I would be stupid not to try and get rid of it the easy way I took a dose of 2 capsules (their daily limit) but noticed no difference. Over the next hour I took another one but it made no difference, I ended up taking 4 but by then I had taken so much morphine and smoked more joints so who knows about any difference it might have made.

Morphine Dosage

So I was at the point where I was hurting, feeling pissed off and desperate and reached for the morphine. I took two droppers full which should have been more than one dose. No effect, this is pretty frightening, when the pain killers don’t work you know you are in for a bumpy ride. I rolled another joint, that helped a little – sometimes I think its the ritual – but still I returned for more morphine and now am, while not in pain, in discomfort. I am trying not to lie down so much either, I think it makes me more nauseous. What keeps me going with this though is them telling me it wasn’t caused by my cancer (because the tumors aren’t where the pain is.) I have a feeling this pain might be connected to my belly button problem.

Plans for the Meeting

Beth called me again and we went over more about the meeting to come (where everyone who agreed to help me as my sickness progresses gathers together to meet for the first and only time.) It will be held in a room in a resort in town, the Dawn Roadhouse I think.

I am so looking forward to this meeting, I feel like I am just arriving at Guerneville for the first time and have the chance to meet all those people that I have, to date, only seen. Vidya might be able to attend telephonically (its a 90 min drive from the Bay Area!) so it looks like things will just fall into place, I hope so anyway for Beth’s sake. Beth is going through some stresses of her own too, with family moving in with her, so prayers for Beth who has been my guardian angel through this.

Community Church

Well, I’m still going to the Church, and feel very comfortable there. I wish I knew the tunes to some of the hymns but thats my only complaint! It is a nice experience to go there, sing hymns, listen to the sermon, hug and introduce myself to other members and afterwards we all eat a meal which another church member brings! It’s very loving and very down to earth. Last week I took my meal and sat by the KGGV garden which Peter and Damien and others have been lovingly tending. I love gardens, don’t you?

Continuing the Oleander

I am in my second day of Oleander and so far feel nothing, which is OK, at least its not making me feel nauseous. I ended up liking the liver cleanse more than I thought I would. It was very gentle on my system and worked over a period of three days. Yesterday I did my show on KOWS and bought a blackberry turnover and a carrot/beet juice from Howards before my show. I drank all the carrot/beet juice but could only get down a little bit of the turnover. By the end of my show I was feeling dicey, Robert called to see if I wanted to go to the third KOWS meeting, I wasn’t sure at first but by the end of my show I was feeling discomfort and I carefully drove back home.

What A Body Can Do To You

Once I got home I lay down, just clasping my stomach, it would turn out that I was having one of my episodes, when the abdomen just hurts so much its unbearable. After about 15 minutes of this I took three Endocets (generic for Percocet), that did nothing at all, certainly didn’t stop me from throwing up. It took about an hour or so to figure out that the meds weren’t working so I rolled my self around to get to the bathroom to get my morphine. This time I followed the nurses’ instruction which was to start off with a half dropper full, then a quarter dropper. She did promise the results were instantaneous, although I gave myself 20 minutes for it to kick in. Nothing in the way of any relief. So I went back and took another whole dropper worth and after a while that seemed to kick in to relieve the pain. Thank you Lord!!! However I found that exhausting on my system, dealing with that amount of pain.

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.