Lymphedema Therapy: Day 3

I'm now on the third day of Lymphedema Therapy. My arm is wrapped daily along with lymphatic massage. So far the swelling has reduced at least 25 %. I'm feeling tired and resting a lot. Took some pics of the therapeutically wrapped arm, here I am, all cushioned up on the sofa:

Lymphedema & Wound Care & Painkillers

Well I managed to get through getting off the painkillers with only a moderate amount of begging God to kill me immediately and get it over with. Ha ha. Now I take zero prescription drugs and none of that horrible morphine. Who invented that crap, nazi's?

What are the side effects of Morphine ?
Morphine on Wikipedia

I've increased the quantity of the Rick Simpson oil to 1 gram per day. I've learned to gauge how much  of it provides pain relief and when. Since I built my tolerance up fairly slowly I don't feel much of an intoxicated effect. If I do I just decrease the dose. I'd rather not feel high but it's a small side effect for a short time...Increasingly I no longer feel any THC effects. My pain level is getting lower and lower. I use a heating pad a lot which is wonderful on the strained back muscles.

I found a physical therapist who treats lymphedema and am starting a week long program next week. Each day she'll do a specific lymph drainage massage and then wrap my arm in a compression bandage. At the end of the week the arm is measured and a compression sleeve is ordered that I'll wear most of the time. I'm really looking forward to this treatment since it will help to return my body to a normal status. The lymph fluid can be prevented from further blockage. It's an awful feeling having pounds of lymph fluid trapped in various places, pushing on organs and creating muscle strain. Remind me to never do this again. Horrible experience.

After the lymph therapy procedures, I'm going to Mad River Hospital which has a special wound care program. For some reason the folks at St. Joseph's were unaware of this great program, no mention of it. Doesn't it seem like it would be effective and logical to offer a patient a list of local resources for their condition. For example, how nice would it have been for them to thoughtfully give me a little list before I left with possible referrals. In my case that list could've included the name and contact info of the only lymphedema certified therapist on the Redwood coast ( Lucinda Brandt) or how about info re the great wound program they have at Mad River Hospital ?

Instead I not only had to identify the problems without their help, I had to determine what was needed to resolve those problems. Lymphedema and wound care were discussed only briefly in terms of  "not much you can do" which, unfortunately for their credibility, is far from true.

Right now the wound is looking very scary. Looks like its filled with pus and turning black all around it. Sounds like gangrene symptoms to me. I'm not happy that ST. Joseph's hospital released me without one move towards wound care and without one word about the need for it. What the hell kind of health care is that? I'm going to the primary doctor to get a referral for the wound care program (at the other local hospital) on Tuesday. Things are starting to jam up on me, I need to get the lymph therapy done hopefully prior to the wound care program, don't know if they can be sccomplished at the same time, probably not, just due to time factors alone.

So far I've gotten 14 separate medical bills from the recent hospital shennanigsns. Ok? ...14 separate bills... Can anyone spell " this is an archaic molding system that needs to be completely dismantled and completely changed???? For shits sake is this the best we can do? Freaking embarrassing incompetence, maybe that's what America specializes in now?

I'm planning to use this Herbal formula for the Lymphedema.
... Not that anyone with a medical degree suggested this formula, I had to research to find it myself. ..I'll have to add up all these medical bills so I can see how much it cost me to get no relevant advice or anything that was life enhancing. Do I sound pissed about that? Well that's because I am. Our American medical system is an aging dinosaur and everyone knows it. Why is this allowed to continue? We are the richest country in the world. Is there a reason our hospitals are death factories?!?


Here's what I think Needs to happen: 1000's of people need to start picketing the hospitals... We need to hold signs that say " we want REAL medical care" .. "We want REAL cancer medicine" as is allowed in other countries. "WE WANT A CHOICE" !!! And chemotherapy with radiation is NOT the only choice!!!

Out of hospital

I'm officially at a motel for 10 days. The hospital has released me based on my refusal to commence radiation and chemotherapy immediately, which they claim is "refusing treatment". Funny thing is I do believe, people with normal medical insurance get to make those choices. So why wouldn't I?

At present I am horribly uncomfortable, the bronchitis is coming back since I got off the antibiotics too soon. Dr. Fratkin of hospice care at St Joes said (only 2 days ago) that he would continue to work with me but when I called yesterday to ask if the antibiotics could be continued, he said I wil have to go to the Emergency Room or make an appointment at the local clinic for further treatment.

I don't know what's up with this corporation hospital but I do know that they released me without any true concern for my well being.  Clear where their concern is at, its on something other than my Heath status. I can't drive, I can barely walk. I need daily care. I had to have my son come to get me. I can't even make a meal to eat.

 The lymphedema and bronchitis needs to be taken care of before slamming my body with anything else. Why is that not obvious?

There is one certified lymphedema doctor in Eureka, she's on vacation until the 7th. Julian's calling to make the appointment. The lymphedema is worse than its ever been, extremely uncomfortable. There is no money for out of the area trips, I have to wait until she gets back. I have no idea whether Medi-cal will pay for lymphedema treatment. I've heard that its minimal treatment with Medi-cal insurance,  or maybe none at all. I'm praying I can get that treatment. The lymph swelling is so bad it's affecting everything, my back is looking like scoliosis and I can barely get around because of the weight on the side, pulling. I'm miserable.

The bronchitis is coming back, congestion, coughing up stuff. I feel so sick. Dear God, please help me.

Pathology Reports

I was told that I don't need to see or review my pathology reports in order to make a decision regarding an aggressive course of treatment. (Radiation & Chemotherapy) In fact, I was ridiculed at some length by social worker Jeanette, and told that it was an unusual request, "since most patients simply trust their Doctor". I was asked in an antagonistic voice whether I thought that "we're just going to treat you for cancer you don't have"?  I was initially told that if I wanted to see my pathology reports, I could go down to the basement records dept and get them myself. (Ok, I will) This woman was more than a little pissed at the mere idea that I would question them.  But, the n
ext day a manila envelope was shoved under my Evergreen room door, inside were pathology reports. I think. Since there was no cover letter saying "here are your pathology reports" nor an indication of how they arrived. Two of the reports says I am a "post mastectomy" patient. Not accurate. I have not had a mastectomy.

The social worker at The Evergreen, Jeanette, was clearly surprised and then outraged that I would request to review and get copies of my pathology reports. She expressed her outrage with increasing contempt and disrespect, literally shouting at me in the family room area "I need to know what your plan is !!" 3 times in a row, followed with "I can call the security guards and have you thrown out of here right now, if you don't want to tell me what your plan is, right now!!!" (Stamping her foot and pounding her fist for emphasis)  I  was having some sort of panic attack by that point so I had to sit down and was gasping for air, scary. But at that point I realized that the shortness of breath I had been experiencing was from an anxiety attack not because the cancer was causing my lungs to fill with fluid as I was told. The shortness of breath stopped within minutes of using a calming breath technique. Which is a good thing to know since otherwise I might've had a heart attack right there. Wow. I finally managed to get out inbetween gasping for air that my plan is, as I already told them, to review my pathology reports before making a decision, to which Jeanette responded by yelling " and you got the reports this morning.. !! Her last words to me as I left the room was shouting " ya, well, all I know is, you BETTER Be in radiation or chemotherapy BY Friday, OR, you're OUT OF HERE!"! Delivered in a nasty tone as if she were a bouncer in a bar or a warden in a prison.

Man these people are serious about rounding up their radiation/ chemotherapy patients. ( Maybe they'll get the stun guns and sneakers out next ? One can only wonder...!

12-26-12: Wednesday : I spent Christmas day with my son and his girlfriend and stayed overnight.. ..got a voice message  from Dr. Fratkin at St. Joseph this morning at 10:30 am. saying that the lock to my room at the Evergreen has been changed and my personal things were "secured for me" to pick up . No notice... Big surprise. Seems a bit of Kami-Kazi action going on here. I wonder why. I called St. Joe's medical records department this morning and was told my medical records will be ready to pick up in a few days, after they are signed off by the doctor.

I just signed a Hipaa release ( a few days ago) to allow the North Coast Journal to review all my hospital records at St. Joseph's. Maybe that's what's causing all the angst and snappy decisions. I wonder what it is they don't want found in my records? Must be interesting .., all this strange paranoid reaction... Locking me out of my room with no notice, strongly discouraging and then refusing to provide pathology reports, verbal attack & intimidation, general nastiness and a distinct lack of respect or compassion.

St. Joseph's Hospital

I ended up at the ER on 12-5-12 due to a severe bronchial infection. My roommate had it for a month before I finally caught it so I guess my immune system did the best it could to fight it off. But it got so bad I was having trouble breathing and had to go to the hospital. They gave me some antibiotics and sent me home. Two nights later I was back in, this time by ambulance. My left breast ruptured and my saline implant actually fell/ slipped out, which was really weird and frightening. I have no idea why that happened. But there is now an open wound where the implant came out, I don't know if it will heal as it is, Dr. Mahoney said it probably won't heal by itself, and she advises that getting radiation for 4-6 weeks will help it to heal. She also says that Radiation treatment will reduce the lymphedema and decrease my back pain. I find nothing online to support that theory, in fact I find
lots of evidence to the contrary;  radiation treatment inhibits wound healing and aggravates lymphedema.

My primary overall impression of St. Joseph's is not good. I've had zero wound care,they didn't even clean the wound, and the hospital bed was so bad that after only 3 days I
now have the beginnings of a bed sore on my tailbone. They have these weird inflatable beds that are supposed to prevent that, but in reality none of the nurses knew how to work the bed and I ended up with my tailbone sitting on the metal frame.

Other than that; death, death, more death. I've been told I'm going to die over and over and over. That place reeks of death. At the end of 3 days,  they were about to release me onto the street (with a referral to a night shelter) with an open wound that had not been cleaned and severe bronchitis. But since I could'nt return to my room rental due to my roommates severe (contagious)  bacterial bronchitis and, I was so sick I couldn't stand up by myself, so they decided to allow me to stay at The Evergreen Lodge, it's in the St. Joseph's compound. Dr Mahoney arranged for me to stay there "while being treated." The next day, at the Evergreen Lodge, Dr Magoney and Jeanette ( they said they work  together) I was told by these two women that if I would agree to radiation therapy "it would be a good excuse to stay at the Evergreen for 3 weeks and therefore " have a roof over my head." Lovely exploitation of the poor, it never stops. I didn't agree, and I was too sick to say much.

Horrified. Depressed. Discouraged. That's how "modern" medicine makes me feel. In one weeks time I was told over and over and over that this illness will kill me, and I can only hope to die comfortably in no pain. ( But they havent staged me) Which by the way is incredibly difficult to believe since I was in St. Joes then the lodge for an entire week in miserable pain until they finally sent the palliative care doctor over (dr. Fratkin) to prescribe some painkillers and a program of pain control. For an entire week I was allowed to suffer and told that going into immediate radiation treatments would  solve all my physical problems including the constant pain. Dr Mahoney says the open wound will probably not heal, however, it looks to me like its already healing.

What's this hospital up to? It's clear to me that they tried to exploit my position by offering " a roof over my head" in exchange for my agreement to get treated with Radiation and chemotherapy. Well that certainly is an expensive roof for Medi-cal to pay for. Wonder what other deals they have over there today? Wonder also how many homeless and or disconnected people have been exploited like this, told they don't need to see their records, intimidated into a "treatment plan", yelled at and threatened. Makes a person wonder. 

Alex Grey & The Law Of One

"One of the primal distortions of the Law of One is that of healing. Healing occurs when a mind/body/spirit complex realizes, deep within itself, the Law of One; that is, that there is no disharmony, no imperfection; that all is complete and whole and perfect. Thus, the intelligent infinity within this mind/body/spirit complex re-forms the illusion of body, mind, or spirit to a form congruent with the Law of One. The healer acts as energizer or catalyst for this completely individual process."

it's a tough job. I'm still in the first frame. 

I worked as a massage therapist in the 90's.  Before attending the classes I thought, I will never ever be able to be in the same room with a naked man I don't know under a sheet, no, I could not picture that. But, one day the connections and understandings kicked in and it became something I excelled at, and really enjoyed. 

I learned a lot from my clients. One was a vietnam vet who had suffered jungle rot to his feet. A very quiet man and the whole time he was getting his massage he had the best little smile on his face, as if he was thinking, I've been through living hell, but here I am, ha. 

I learned a lot about the power of touch and intention. And I learned that we all want the same basic things; comfort, acceptance, connection, a way to heal.   

Rick Simpson Cannabis Oil: 3 weeks

I've been using the cannabis oil for 3 weeks, and am halfway through my third gram-size vial. Increasing the dose causes me to want to rest or sleep a lot, it's a nice feeling considering I do need the rest, but it's difficult to get things done feeling sleepy. I don't think I'll be able to increase the dose much  more, but maybe I'll build a tolerance and it will be possible. I have to be able to work 3-4 hours per day, plus grocery shop, cook, clean, etc.  lately it takes more willpower to get through each day. I'm tired and the back strain made things a lot more difficult in recent weeks. 

I've been having sporadic intense itching in the breast area and substantial pain every once in a while...last night was pain or itch all night. But the redness is reduced and visually things look better.

My appetite is not that good, more for emotional than physical reasons. My weight is at 120 lbs. 

 I'll continue to use the "Rick Simpson oil', and increase the dose as I can.