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Jeremy UPDATE 7/06/07

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Jul. 6th, 2007 | 11:35 am

Dear family & friends,

What a long strange trip it continues to be. A lot has happened over the past few months that I haven't really felt up to communicating until now. Thankfully I am feeling better and more like reaching out.

CHEMOTHERAPY:
The second chemotherapy trial (Epothilone B and Mitoxantrone) didn't work at all. I started having more distressing symptoms early in this trial. And, honestly, this period was the most difficult time for me so far. The cancer metastasized throughout my pelvis to the point where soft tissue began to put pressure on the nerves throughout my pelvis (called the cauda equina or "horses tail" syndrome). This caused me all kinds of trouble including a lot more pain and a lot less control of my bladder and bowels for about a month..

And it was just bad luck that my oncologist was traveling for a week during this time, plus my MRI results were slow in getting read and sent to UCSF, AND I had a hard time getting anyone at UCSF to take me seriously while he was away. So I ended up having to deal with weeks of unnecessary pain and uncomfortability. Bone pain is very hard to treat and incredibly painful for some people. I have been dealing with this pain since before I was diagnosed. Its like something gnawing at you from the inside, so deep that sometimes you don't even know its there and then suddenly your bones feel like splinters, and the pain surges in your upper legs, arms, shoulders, chest, head - literally throbbing with every heartbeat. When the pain was at its worse, not even 4 times the morphine worked. Not fun. My only respite from it was getting daily ear acupuncture with electric stimulation from Michael McCulloch and Johanna at the clinic which really helped interrupt the pain cycles.

Finally, this horses tail syndrome landed me in the emergency room which included a four day stay at UCSF and 4 more units of blood over a few days time. It also started a 10 day course of radiation therapy focused on my pelvic area and on T-12 (thoracic vertebrae # 12). The radiation actually didn't hurt at all when I got it but the long term fatigue and other symptoms suck. To make it easier for me mentally and spiritually I imagined everyday that it was divine light touching the parts that needed to be healed and protecting the other parts that it was vibrating through. The radiologists were all very nice  (if not a little weird, they do work in a basement all day behind lead doors) and I suppose it made it easier to lay under this big machine when I saw the children's stickers on it that I could play with. And I also saw the children, and even some infants getting radiation daily. Thinking about their struggle made it easier for me to deal with mine. The hardest part about it was that it was over my stomach and my intestines which caused another two weeks of vomiting and other digestive issues. But, thank the Creator, the upside to all of this is that it worked! I now have a lot less pain and complete control of my bodily functions again - which is a relief only known to those who have lost them..

NEW TREATMENTS:
Since radiation I have been on a "chemo-vacation." Instead I am trying two experimental drugs, one called GM-CSF (Granulocyte Macrophage Colony Stimulating Factor) and the other DCA (dichloroacetic acid). The GM-CSF works to stimulate my immune system to kill the cancer and the DCA stimulates cellular death inside the cancer cell (apoptosis). In addition to this I am still taking lots of herbs and supplements (when I can keep them down) that Michael Broffman at the Pine St. Clinic recommends. I have no idea if these drugs are working yet but I do know that my most recent PSA  is up again to 460+ which is not a good sign. It actually dropped to 160 three weeks ago - this was probably due to the intense radiation and not from the drugs, but who knows for sure?

SIDE - EFFECTS:
The side effects of these drugs are fairly benign compared to chemo, but sometimes painful. The GMCSF actually stimulates new white blood cell production which can cause a "bone flare" in my chest and other regions where the bones produce blood cells. This just adds to the bone pain. And for some unexplained reason, I have been vomiting about every other day regardless if I am taking anything or not.

PROGNOSIS:
It's really hard to tell. Just because the cancer is progressing does not necessarily mean that I am losing. From the time that I was originally diagnosed to now, we have managed to slow the cancer's progress down significantly. I consider this a victory in the longer battle over time. At the moment I am dealing with a neck / head ache and vomiting which can really wear me down when it is bad. But I have been feeling better for the past week. I just had an MRI of my neck and brain to determine if the pain was caused by the metastasis and if it has gotten into the brain (vomiting) and thankfully it has not gotten into the brain at all. Unfortunately the cancer has spread a little bit inside the skull and neck bone but it has stayed well within the boundaries of bone (which is what prostate cancer usually does, so there is no great risk of it going into the brain). My oncologist is discussing the possibility of a short burst of radiation to help address the pain in the neck and skull. I may do this next week if it is possible. In terms of the nausea, all I can do for now is take anti-nausea meds and hope for it to go away.

NEXT-STEPS:
If the GMCSF and DCA work then I will continue on it for as long as possible. But since my PSA is up again I will probably start another combination of chemotherapy - carboplatin and taxol which is not an easy therapy but supposedly an effective one for stubborn cancers. If that doesn't work, then its back to the drawing board. On September 7-9 there is a conference in LA (The 2007 National Conference on Prostate Cancer) that will bring a lot of the experts together to present the latest treatments for prostate cancer world wide. Beth and I intend to go to this to see what else is out there. There is always the possibility that a new clinical trial may start somewhere in the world that may be very promising. This is the kind of thing a lot of advanced cancer patients face. They go from one trial to the next in order to stay alive until they find a cure.

THE CLOSEST THING TO A CURE?:
There is also the possibility for me to get a "mini-allogenic transplant" which is a type of bone marrow transplant that does not require that you completely destroy your own bone marrow before receiving another one. Theoretically this is the closest thing to a cure that I may have the opportunity to try. The idea is that once you receive another person's marrow that this new marrow /  immune system will take on the cancer and actually kill it. I am excited about this possibility but there are big pro's and con's to this approach because if it doesn't work, if the new marrow doesn't "graft" or take hold and replace my marrow, then I will have that much less bone marrow of my own to fight off any infections, diseases or cancer. Its a big gamble but may end up being more promising looking down the line. I am doing research into this now and if anyone has any experience in this area, please let me know.

WORK:
I am not working and probably won't any time soon. June 5th was the last day of my CA State Disability payments (which covered 100% of my paychecks) and now I am getting 40% less. Thats a big hit for us but at least I do have long term disability (LTD). If Greenpeace hadn't paid for LTD for their employees, Beth and I would have to leave California and I would be only receiving a very small Social Security payment.  In terms of medical bills, etc. I am still getting some $1000 medical bills (from last year!) and depending on the month I'm still paying $500 - $1500 over what I make. This is just counting money spent on medical co-pays, medicine, acupuncture and herbs. I am only able to do this because of your generosity and help with fund-raising, and my savings. I look forward to the time where I can work again and repay my generous family and friends in any way that I can.

Although I have not had the energy for anything steady, I am trying to contribute in any way that I can. I recently co-wrote my first peer reviewed article titled "Antioxidants & Chemotherapy for Advanced Prostate Cancer:"

View it here:
http://www.pinestreetfoundation.org/avenues/avenues18/byoa18.html

And I am now volunteering at the Pine Street Clinic once a week, when I feel up to it. Its great to still be able to contribute when I can. It makes me feel more alive

HELP:
Beth and I can still use all the same types of support with rides, especially during treatment days. We have found Meals of Marin (MoM) which will deliver a cooked meal for both of us (75% organic) up to 7 days a week! The food is good about 60% of the time but who can complain? Any meals or other support that you want to add to this is much appreciated :).

Thank you again to everyone for your love and support. In the face of all of this I am still feeling happy much of the time and I am continuing to explore healing with my traditional healer and friend Miguel. Before the latest healing ceremony, I was feeling like giving up before the ceremony. I had no energy, was sick of suffering and felt overwhelmed by my own life.  By the end of it I felt so uplifted by the love in the room that I was a transformed person. I feel fortunate to have experienced a moment where my closest friends and much of my family have been able to get together to express their Love for me.  To the point where one feels and knows without a doubt that there is enough Love in the world to continue to exist.

Love,
Jeremy

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Comments {5}

Thanks for the news

from: lanihorn
date: Jul. 6th, 2007 06:54 pm (UTC)
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Hey Jer,

Thanks for the update. I am, as always, here for you if you need me.

Sending lots of love...

Lani

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(no subject)

from: anonymous
date: Jul. 8th, 2007 01:54 am (UTC)
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Jeremy,

I usually comment to you in e-mails because I haven't been able to get my comments posted(my own lack of ability).....anyhow, as your mother, I can never tell you enough how much I love you, how, as you live your life, I could not ask for you to be a better man.....you are, and always have been the person I would want to be, if given a choice. All I want now, of course, is for that cure....for you to live your life to the fullest, without pain or disease. My work now is to help you achieve that, whatever it takes, and you know that Tom supports the process! When I meditate on your healing, I visualize all the people who love you surrounding you and filling you with the white light of love, leaving no room for tumors to continue to live. I know I cannot heal you by myself, and at the same time, I know the incredible power of love and you can use the power of all of us to help you!
You and Bethleigh are never alone on this tough road!
All my love, Mom

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(no subject)

from: anonymous
date: Jul. 12th, 2007 09:09 pm (UTC)
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Have you ever tried to make you feel better with Natural Herbs?

If I were you I would drink Chickweed and Red Raspberry Tea leave at least three times a day, as well as Yarrow and Read Clover Tea twice a day; I would do this daily for at least four weeks or till I feel better. At any time on or two of these can be left out for a week -except the Chickweed, that needs to be taken at least four weeks continuously.
These four teas/herbs are real WONDER -Healers! (see Louise Tenney's Herb Book: " Health Handbook"/Second Edition


At least it can't hurt to give Nature a chance!..... That people survive any illness DESPITE the Western Allopathic Medicine treatments (TOTAL QUACK!!!.... If you want to know how I can say that ,get in touch with me! : ) ) is proof of their OWN strength -and proof that they would have healed even more and faster without the ADDED TOXINS in/to their body, which indeed ALL SYNTHETIC Pharmaca IS!

Also; to have a chat with the people at Optimum Institute just outside of San Diego, Calif.
http://www.optimumhealth.org/optimumhealth/aboutus/aboutus.htm

Wishing you the very BEST/ Astrid
www.heavenlyearth.net

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(no subject)

from: anonymous
date: Jul. 12th, 2007 09:27 pm (UTC)
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Have you ever tried to make you feel better with Natural Herbs?

If I were you I would drink Chickweed and Red Raspberry leave-Tea at least three times a day, as well as Yarrow and Read Clover Tea twice a day; I would do this daily for at least four weeks or till I feel better. At any time on or two of these can be left out for a week -except the Chickweed, that needs to be taken at least four weeks continuously.
These four teas/herbs are real WONDER -Healers! (see Louise Tenney's Herb Book: " Health Handbook"/Second Edition


At least it can't hurt to give Nature a chance!..... That people survive any illness DESPITE the Western Allopathic Medicine treatments (TOTAL QUACK!!!.... If you want to know how I can say that ,get in touch with me! : ) ) is proof of their OWN strength -and proof that they would have healed even more and faster without the ADDED TOXINS in/to their body, which indeed ALL SYNTHETIC Pharmaca IS!

Also; to have a chat with the people at Optimum Institute just outside of San Diego, Calif. couldn't hurt. I know they have worked Wonders for people with grapefruit size cysts with just checkweed tea ( plus over all detox/ cleansing)
Herb tea(-treatments) we can "do" despite what ever else we do, can't we?! ... soooo....
http://www.optimumhealth.org/optimumhealth/aboutus/aboutus.htm

Wishing you the very BEST/ Astrid
www.heavenlyearth.net
(PS.I want you to know, that I ran into your web-site totally "by mistake"! : ) .... if that means anything to you. And I too will wrap you in Love & Light! )

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Shana

(no subject)

from: girlinthemoon
date: Jul. 27th, 2007 01:15 pm (UTC)
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Thinking of you so much, Jer, and sending you so much love and healing light. I love you.

Shana

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