Wednesday, December 31, 2008
I am still going to be working on healing myself and doing introspective work to help guide me. I hope to be a healer one day so that I can help others. Thank you for watching me ride my lifelong roller coaster and for all of your love and support. I have fabulous people. You are the ones that hold me up.
Monday, December 29, 2008
I have lots of friends in town visiting me and I have been going out a bit too. I do not last long at big events, about an hour. There is something about sound and vibration that disturbs me these days. Cant handle it. I already feel my pulse all over my body, like when you can see your hair move with your heartbeat. One on one, I have been doing very well.
Two days ago, I went to a friend of a friend's house. She wanted to do a prayer for me, so I said sure. It turns out that it was a Medicine Buddha Puja (that last word means ceremony). I am open to all prayers, so I sat for about 30-40 minutes. During that time, my cough kicked in and then changed to a strange sound. By the time she was done, I could not talk, as in no voice. I was very tired, went home and slept for 48hours off and on with friends coming over and helping me with food and the dog. I feel better this morning enough to come downstairs and type. I feel that this is all a good thing and my body has received the healing and is integrating it. It will take time though. I still do not have a voice, but my cough is returning to a normal sound, a bit. I am well enough to listen to the radio or watch tv now. I even had a nice chat (whisper) with my friend who came over this morning and made me breakfast. I do not know if it is a healing that is going to affect the cancer, but it is having an effect on my shoulder girdle, the place I hold ALL of my tension. The road is long and winding. (not as in a breeze, but as in curvey).
Meanwhile, I have been offered the opportunity and accepted to become and understudy of the healer in South Africa. His name is Leo, but I will now be referring to him as Sigung. From Wikipedia:
Sigung or Shigong or "Si Kung" (師公) is the sifu's sifu in a Chinese martial art school. Si means teacher. Gung means grandfather.
He is a Shaolin Grandmaster as well as a healer. That understudy has not yet begun. The first step in all healing instruction is to heal yourself first. So for all of you out there worrying about me doing something that will wipe me out, don’t worry. I will be tired, but it will be the type that is from healing, not from overdoing it. If I overdo it, it is my doing separate from the healing.
The hardest part of this for me is that there are no guarantees in life. Healing is a separate process than getting better. They can go hand in hand, or they can diverge. Healing is related to the soul, getting better is a body thing. I cannot guarantee that this healing is going to get me better in this life. No one can guarantee that in any modality I have undertaken. This is the direction I am choosing because it is bigger than me. We are all a small part in a big picture and I want to help the big picture as much as I can, so this is the way I choose. I know and trust Sigung to do what is right and think this is the best direction for my long term health.
It also means that I will come out of this (either in this life, or another) able to help others, which is all I have wanted to do. I know a lot of this is pretty corny for some of you, but I figured I might as well spill the beans before I start, so no one is surprised.
FYI, I am going to continue working with Kaiser and some other doctors, I am just not sure which ones. Sigung is going to help me with that.
There, I told everybody. That is a big deal for me.
I love you all and thank you for all of your support.
Tuesday, December 09, 2008
I am doing really well. My tumor is shrinking like mad!! Life is going on pretty much as normal here, except that I have a lot more time because I do not work any more and that I am tired. The fatigue is getting old and today I decided to just do something, so I worked in the office and cleaned.
I have now hired someone to do my finances because I cannot do for myself what I used to do for others. A bit annoying and also exciting. I feel like I am moving up the food chain. There is something that I do not have to do myself. Wahoo. Hence, I spent today cleaning the office for her. Ok… so one step back…
I find myself now much more sensitive to noise and people energy than I have in the past. It seems I am able to do things like clean the office, but not stand in a store that has music blaring with static. Considering that I used to be the one who spent a party flitting from one group to the next and turning the music up, this is now a different way for me to be. I guess I feel a bit grown up about it. Oh well. Despite my best efforts to be Peter Pan, life finally got me to grow up.
Today has been a really good day (read: shopping!). I got out of the house and got a few errands done as well as spent a little time at a clothing store that has this great after thanks giving sale. The clothes are awesome, but for some reason I was the only one in there under the age of 60…I guess it was the time of day?? I also took the kids to a couple of stores and felt like my grandmother when I got to Walgreens ( a little too excited over such an expedition), but I really did have a long list!! Now I am going to make dinner (more activity) and I am looking forward to it. I am not drained. Hey, I did take an iron pill today. Maybe I am just anemic. That would be cool. An easy solution.
So anyway I am meandering, which is pretty much the flow of my life right now. The real bummer to my fatigue is that the family is going to go to England for the holidays without me. I am sad that I do not get to partake in the festivities, but I am also looking forward to the quiet time. Lots of it. My body is healing very well, but it is very tiring. I have never understood what about a long flight that could wipe you out, other than jet lag. Now just thinking about it makes me tired. So for all of you near by, if you are around and want to hang, I am going to be doing a little of that too. I might get booked and have to say no so I am not overbooked, but that is unlikely.
Love to everyone. I am gonna be great thanks to all of your love and support.
Oh, we have a site up to help us get support, but it is not easy to get people signed up on it. It is taking way too long for us to organize this, but we have still been getting help from some people that we just cant get rid of.. If you want to use that service, please e-mail Andy with your e-mail address and he will get you on the list. firstname.lastname@example.org You will then get an e-mail invitation from www.lotsahelpinghands.com. Then you can join it. A bit complicated, but we will have food lists up soon, as well as restaurant lists.
Tuesday, November 25, 2008
Friday, November 21, 2008
So folks want to know what is up and we have not been very forthcoming with updates. Life is just moving slowly. No I am moving slowly. It is something that I have been working toward for a long time and I am trying to maintain it.
Some days I feel almost normal. That means a little woozy if I move to fast, like get out of the car and think I can just move normal pace (for me). Other days, I can do things, but I have to take breaks and sit down between. I call it fragile. Too much motion or noise or too many people at one time make me very woozy and want to hide. Some people have lived their entire lives like this. It is just new to me.
I think that a lot of this is caused by the energy work that is being done on me.
So here is a break down of everything that is happening:
Kaiser is giving me Faslodex, which is a hormone blocker. This has been agreed as the best next step for my treatment because I am ER positive, so I don’t need chemo just yet (yippie). At first my neck got more swollen and tender, which only today I found out means that it is more likely to work. Good news. It is a shot once a month. We are doing it for 3 months and then getting a scan. That will be in end of Jan beginning of Feb.
The integrative doc in Sebastapol, Amitabha Clinic, does anything under the sun that they understand works. They agreed that the Faslodex is a good thing. They also give me lots of supplements and other pills to take. I am on a low acid, high alkaline diet from them. I get IV therapy that has Vitamin C, K, B, DMSO and lots of other good stuff in there. I do that supposedly once a week.
The Chinese and Tibetan doctors work together. I have seen them together two times under the Tibetan medicine direction, two weeks apart. I take herbs from them 3 times a day. They agree that my healing over that two weeks was very huge and that if it goes at that rate, I will be in great shape. Good news. I see the Chinese doc alone and get acupuncture from him next week.
Leo in South Africa has been working on me for the last two weeks doing distance healing. Both he and Brian (another healer I am in contact with) say I am responding well. More good news. I believe he is the cause of most of my exhaustion right now as I was mostly recovered from the pneumonia before he started.
So that sums it up.
Andy has been out of town this week and Allen Poole has been here helping out from Oregon. He is fabulous and we have had a great time. Andy comes back tomorrow, Allen leaves in an hour. Andy does not leave town without us any more in 2008. Yippie!!
I have been having some people cook for me and some shop for me. We have signed up for a computer system that will organize our helpers, but have not set it up yet. We don’t know what we are going to need quite yet. I am hoping to have an ongoing 2 meals a week support to cover us while Andy is working and I am getting back on my feet. I do not know how much energy I am going to have after Leo winds up his work. He has one more week left.
I am loving hearing from everyone, but don’t always stay on the phone long. Please don’t take it personally. I love each and every one of you.
Gotta take Allen to the train.
Tuesday, November 11, 2008
Thursday, November 06, 2008
We have confirmed with Rebecca's oncologist that she will do the Faslodex treatment next. Here is some text from the Faslodex.com home page:
Doesn't that sound fun!
FASLODEX is a hormonal treatment for metastatic hormone receptor-positive breast cancer. It is for postmenopausal women whose disease has returned or progressed following an antiestrogen (medication that blocks estrogen), such as tamoxifen. FASLODEX may be effective when tamoxifen no longer works for you.
And unlike a pill you have to take every day, FASLODEX is an injection you get once a month in your doctor's office. So you can focus on you, not your treatment.
Monday, November 03, 2008
Meanwhile, Rebecca continues to recover from the pneumonia and continues to get stronger. It seems to be 'common knowledge' that it takes weeks to recover from pneumonia so there is no surprise that she's not yet back at full speed. The big question that remains to be answered in the short term is how much of her current condition is the pneumonia and how much has 'other causes'. My understanding is that the cancer in her lungs now gives her a predisposition to infections like pneumonia because the standard lung cleaning operations are obstructed by the cancer growth. I'm not sure what we do about that.
The results of the last biopsy showed that Rebecca's tumor is still estrogen receptor positive. This means that it can still be treated by 'starving' the tumor of estrogen. The doctor has proposed a hormone treatment that is a monthly injection. He hopes that the treatment will either stop the current growth or may even shrink the tumors. I'm not quite sure how that aligns with his other statement that there is a 30% chance of this treatment being effective. The proposal is that she tries this treatment for 3 months and then we check to see if it has helped.
One of the main questions we have right now is: Why not jump in at this stage and aggressively treat the cancer with chemo therapy? Not that Rebecca particularly wants to do chemo but we are wandering why that isn't the recommendation.
In other news... Rebecca went to see a new doctor at the end of last week. At her initial meeting there were actually 2 doctors present, the homeopath and the Tibetan doctor. They sat on either side of her both checked her pulses while discussing with her and with each other what they were feeling. Rebecca was particularly impressed that rather than asking her what her symptoms are these doctors felt her pulses and told her what was going on... You are sleeping poorly, you have back pain, you have 'this ' type of cough... etc. Rebecca has great hope that the treatments offered by these doctors; herbs, dietary, etc, will address not only these symptoms but the underlaying systemic causes of the cancer growth.
We continue to gather information about all of the cancer 'cures' that are available out there. Many of you have sent us pointers to various practices and practitioners. We have to try to work out which of these avenues Rebecca should pursue, some of them are mutually exclusive.
More as the news comes in...
Sunday, October 26, 2008
We are talking with the kids and trying to give them the support they need and the space to be sad, angry and indifferent. They seem to be doing OK given the circumstance.
I'm off on a week long business trip. Emily, our house mate, will be helping Rebecca for the week with the running around as well as some awesome carpool community. Feel free to call Rebecca on the home phone she will answer or not based on her ability to do so. Home phone is better than cell as we are both racking unreasonable amounts of cell minutes.
Love you all...
Thursday, October 23, 2008
Wednesday, October 22, 2008
We got back the results of the needle aspiration, they confirmed cancer, no infection. It sucks that there's no infection as we can't blame any of the size of the lumps on anything but the cancer.
The final TB (loogie) test came back negative... She doesn't have TB.
Today she had the needle biopsy and her port installed. It went as well as these things can go.
So the situation as we currently understand it is this:
Rebecca's cancer has spread significantly through various parts of her chest and up into her neck. The cancer in the lungs created little pockets for bacteria to breed and that's why she got pneumonia. She is on antibiotics to deal with the pneumonia.
Based on the results of todays biopsy we will know if the tumor is still hormone receptor positive. This knowledge will let us know if she can still try alternate hormone therapies or if it is straight on to chemo. The project for the next week or so is working out her treatment plan.... I'll let you know what are choices and decisions are as we go.
As well as whatever the oncologist recommends we will continue to pursue other options from other healing traditions.
Tuesday, October 21, 2008
I'll let you know what the results are once we hear
Monday, October 20, 2008
In order to determine that Rebecca does NOT have TB to the satisfaction of CDC guidelines she has to have three consecutive negative sputum tests. To fail these tests, each morning she has to 'hock a loogie' into a cup. For those of you unfamiliar with this technical term it is the art of getting as much 'gunk' as possible into a glob before spitting into said cup. If she fails to get enough 'stuff' into her loogie they make her breath in an irritant to promote the upward movement of the 'gunk'. The irritant seems to work, judging by how irritated Rebecca gets.
Once she has hocked they send the loogie to the lab where it is examined for signs of the TB bacteria. It takes about 24 hours to get the results back from the lab. SO.... If she fails the first, Sunday morning, loogie test and the consecutive Monday and Tuesday tests she COULD be released on Wednesday morning upon receipt of the negative result. This theory is all great except that we still haven't heard what the results of the first test were. However if the TB test come back negative then we are back trying to work out what IS wrong.
The radiologists report says that there are 'lesions' present in the mediastynum, the pleura, the lungs and nodes on both sides of the neck (and I think a couple of other places too but I forget what they were called). The oncologist says that these might be cancer or they might be due to an infection, you just can't tell. The fact that Rebecca has been running a fever is an indicator towards her having an infection. Just an infection? or cancer and an infection?
The most accessible manifestation of her ill-being is the massive lump above her left clavicle so that is the first place to dig, literally. Tonight she had a needle aspiration of the super-clavicular node. If they find cancer then it means that node has cancer, if they don't find cancer it means there may be cancer there and they missed it with the needle. So next step would be a 'core biopsy', a larger needle that they insert under some radiological imaging device so that they are sure to miss all the vains and nerves that run through the neck. They don't want to do a surgical biopsy because of all the vital stuff that runs up the neck. I asked why they don't just cut of her head and shake to see what falls out; Rebecca laughed, the doctor scowled.
SO... The news that we could get tomorrow is either a positive result of cancer in the super-clavicular node, which wouldn't be good OR a negative result that would send us on to the next test. The other news we could get would be a positive result on the TB (loogie) test, which wouldn't be bad, OR a negative on that would send us to the next test.
One other data point before I go to bed... Rebecca had the BCG vaccine a couple of months ago. She is convinced that the problem is a bad reaction to that vaccine. In her research she found a set of symptoms that match all of her condition fairly closely. Pneumonia, nodes in the neck, low grade blood infection (I don't think I mentioned that they think she might also have a low grade blood infection)... The doctors have all discounted her wikipedia diagnosis, I am going on record saying that I wouldn't be at all surprised if she turned out to be right.
If you want to reach out to Rebecca call her cell phone. If she's not up for talking she will not answer. If you want to visit talk to her about it on the phone and schedule your time.
You know how to reach me.
lots of love,
Sunday, October 19, 2008
As you may know Rebecca has been 'under the weather' for quite a while. She first came down with 'flue-like symptoms' about a month ago. At first we all assumed that she had flue, it fit the symptoms and there was a fair amount of it going around. However, while everyone else around us got better; Rebecca didn't. A couple of times Rebecca thought she was on the mend only to be knocked back into bed with a fever again. Saturday she finally got sick of the cycle and had me take her to the hospital.
Rebecca, her primary physician and her oncologist had already decided that she should have a CT scan soon so we were pretty clear as we drove to the ER that we were going to get them to send her for a CT to see what was going on in Rebecca's lungs. We dropped the kids off with Sindry and Owen and headed to Kaiser Oakland ER.
We arrived at the ER on Saturday evening at around 6pm. By 6:30 we were in a nice private room. They got us triaged and booked in so fast that the registration person came and processed our registration in our private room... They were awesome... another BIG thanks to Kaiser for being great when we needed them to be!!
They warned us that the Kaiser Richmond CT scanner was down so there was a long wait in Oakland but readily agreed to the scan once they understood the situation and the history. We settled in, they even brought me a gurney to lay on next to Rebecca. At about 3am they came and took Rebecca for her CT.
Not long later she returned with the doctor; this is my tired brains' best attempt at recalling what they said:
They could see significant 'stuff' on Rebecca's right lung, but it wasn't clear what it was. Due to the cyclic nature of Rebecca's symptoms over the preceding month TB became a real possibility and the ER put us into 'lock-down'. In fact all they did was move us to a different room that has special filtration and started to wear masks around Rebecca but it seemed much more dramatic.
Apparently it's not uncommon for people with cancer to get TB; who knew?
As Sunday progressed, while I was off with the kids, the option that this is ALSO pneumonia has also been introduced. It seems that this is apparently a combination of things going on not just one. So... It takes a little while to get a positive diagnosis of TB so for now they are giving Rebecca intravenous antibiotics that SHOULD deal with any pneumonia that is present. Next they will start TB treatment either because they get a positive diagnosis or they will often start it prophylacticly just to be sure. Apparently it can take weeks to grow a TB culture. You can get a quick positive diagnosis by finding TB germs in spit under the microscope but proving a negative diagnosis once TB is suspected can take weeks. If the 'stuff' on her lung is neither TB nor pneumonia then by a process of elimination then it will be more metastatic cancer.
Another 'clue' is the swollen lymph nodes that are visible on the CT in her neck. Lymph nodes can get enlarged due to infection or cancer.... By biopsying the nodes (a needle biopsy is a pretty non-invasive procedure) they may be able to shortcut some of this guess work. I'm not quite sure how this works yet but I guess that if the biopsy the nodes and there's no cancer that has to be a good thing.
SO.... we already knew that Rebecca had a small amount of metastatic cancer on her right lung (that was the diagnosis from 2 years ago) it is possible that hasn't changed or progressed significantly. Best case... she has pneumonia and that's it... but when I have suggested that it has been hinted that is unlikely but I don't get why... maybe they just don't want to get hopes up. It may be something to do with the CT, apparently pneumonia looks quite different from TB and cancer but TB and cancer can look quite similar.
TB, if that's what it is, is treated with 12 months of some anti-biotic cocktail. I haven't heard yet if this is an anti-biotic that has many of the side-effects that Rebecca is very sensitive to.
Tomorrow her regular oncologist will be back at work and maybe I'll get more info from him.
For now, lets all just hope that Rebbecca has a nasty pneumonia and that a week of IV intravenous antibiotic will have her home and healthy!!
Watch this space for updates, facts and jokes.... Your current assignment is to complete this joke:
3 diseases; pneumonia, TB and cancer walk into a bar.... (should it be an oxygen bar? )
Love to you all
PLEASE call me or email me or leave comments here, I'd love to hear from you.
I will ask Rebecca tomorrow how available she is for visits or phone calls.
Tuesday, March 25, 2008
The one thing we have always be wary of is talking about the alternative medicine that Rebecca has engaged with. At best his attitude has been.."well, I guess it can't do any harm", but even that he qualifies with "unless you do something that does".
So imagine our pleasant surprise when at his recent visit he said... "you are doing SO well, it's way better than can be explained by my treatment, I guess some of that other stuff you are doing must be helping too"... nice :-)