Monday, September 02, 2002
Archives
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Below are the recovered posts from the Michigan Womyn's Music Festival Bulletin Board (known as the Discussion Forum at www.michfest.com) dating from 9/2/02 through 3/03. It was blogging before there was a word for it. There were literally hundreds of posts between my updates and they appear to be lost forever. Most of the posts below are by me or someone typing for me but the first one is by my good friend, Bettina, who started it all.
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Hi everyone. As some of you may know when V left festival this year she wasn't feeling well. She even went into Ludington to see a Dr. The illness persisted even upon her return home and she is still not feeling well. After many visits to her Dr. in Santa Cruz they have finally narrowed her illness down to an immune system disorder. They are not sure how dangerous this illness is but have started V on medicine, which they are hoping will kick in a few days. It would be really great if you know V, even if you don't know V, for all of us to say prayers for her and send her a get well wish here on the bb.
V, doll, I love you bunches and bunches and am sending you warm fuzzy wishes. I'll speak with you soon.
XXOO,
bettina
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Thank you so much everyone- the next few days are crucial & I am counting on all this love to get me through. Erytherma Multiforme is sometimes fatal but we are aggressively using steroids & if I turn the corner in the next few days, things will look good. It reoccurs but - hey! I'll take what I can get!
It's extremely painful - cracked lips & lots of open lesions in the mouth - difficult to eat or sleep or act normally. My vision is now impaired but I can still sort of make out words so that's cool. Being on week #5 of intense pain & hunger is making me weary.
I'm interested to know what are some of the more natural things I can use - of course I am rinsing with saline plus on Echinacea & goldenseal, vitamin B complex and C and licorice root. PEG- if you're into looking up the Western diagnosis and venturing an opinion - I'm all for it.
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Again - thanks everyone. Whitewolf, Parker & I are doing the best we can. Putting our best foot forward into a very scary situation. Big love to you all.
PS - Barbara - you are, of course, still 10 days healthier than I. Pinker, clearer and I dare say with more taste buds! I couldn't put smoke into this mouth if you paid me!
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I actually did go to those sites - they're not bad. The second one is better. The fear is that I have EM Major. My first symptoms happened 8 weeks ago, getting severe 3 weeks later. Obviously spontaneous resolution isn't in the cards.
I haven't really emailed anyone except family. And called close friends. But sure - tell whomever you want-I am all for the positive energy!
OK - gotta go. I am soooooo tired. Love love. V
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Hello all - I am very, very tired but think I am turning the corner. The expectations of being symptom free by now are not true. I still can't see well (still can't drive), I cannot taste very well at all (can't tell the difference between salt and sugar, for example) and my mouth is still quite painful. There is some good news though - swelling is down, some of the lesions are receding, I ate soft but solid food today (been on broth and shakes for quite a while.)
I am very tired & still drool a lot (sooooo annoying!) but I really do think it'll be OK. Patience. I pray for health and patience in this time of equal balance.
Thanks for listening & love (and the herbal suggestions!) V
I just want to say thanks again-to those who've written and those who've called - even those who are lurking.
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I want to say I'm all better now - but I am not. I cry alot because I am so uncomfortable and have so little comfort available that I can give myself. Can't do comfort food (or really any solid food)- can't do my quilting or read well. I'm too tired to garden or do housework or so many things that usually help. And trying to take care of Parker is - so hard-so hard. He told Nate from Carps on the phone that she has no idea how hard it is to be a kid with a sick Mom. I cried again.
I am grateful to the church folks who bring my family food and take in our trashcans and wash the kitchen floor. Whitewolf can't do all that she has to do and take care of Parker and me too.
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Yikes - I am thinking that my normally cheery disposition is fading fast, eh? I'm trying to look on the bright side. But the discomfort (believe me - the details are too yucky to mention) is getting to me. Which - by the way - is why I am on this computer screen that I can't even see and not sleeping. OK - enough. Just know how much it means to me that you bothered to read this so un-V complaining. Good night friends.
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You know - health is so tenuous. It seems like I am in a holding pattern (and not a comfortable one!) The mouth lesions and fever blisters and eye infections persist despite my best efforts to be rid of them. I have most recently been tested for a genetic autoimmune disorder - no word on that yet. I still can't eat and continue to drool. I cannot taste but make sure I get lots of clean water.
I have good news with my eyes-the infections seem to be contained in the easiest places to reach so although I still cannot see, it could be a lot worse. I am taking antibiotic drops for that. I haven't been able to locate fresh eyebright but still search.
Also good news with my teeth - even though my gums look absolutely dreadful, the teeth are still intact. I am rinsing with antibacterial stuff that stings like heck but keeps my mouth as clean as can be. My teeth are soooo hot! It is a bizarre sensation to have hot teeth. Not bad really - just weird!
Let's see - any other good news? Well - the outpouring of love is staggering. People have made soups and cleaned my bathroom and sent money and done my laundry and taken care of Parker. It is humbling. It has made all the difference in the world really. It is almost unbelievable that I need as much help as I do and even more unbelievable that it is they’re for me. It makes me cry and feel blessed and grateful. Which is good because it helps balance out the pain and misery and financial distress of being in this condition for so long.
I guess that's it for the update - still very sick. Blessed. Trying to carry on. Thanks for being on this journey with us. Love, V
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Update - this has been a bad, bad week. I had begun to taper off the prednisone but when I did things got much worse. Now, in addition to my entire mouth and tongue being open and cracked, the skin on my lips just disintegrates at the slightest touch. It's excruciating and makes it very tricky to ingest anything.
I am being vigilant about getting water and some kind of powdered nutrients into me - even if I have to cry the whole time. But I can feel my bones start to ache and wonder if my body is just taking nutrients from them?
Also I am vigilant about trying to brush my teeth - I can't tell you what an ordeal it is but the thought of losing all of my teeth (the gums are also disintegrating) is just horrible so I do what I can.
Good news on the eyes- after 10 days of three separate antibiotics in the eyes, there is marked improvement. I can definitely see better and feel like that is behind me for the moment- for which I am very grateful!
We're waiting on a biopsy that growing in some dish in San Francisco to see if there is a distinct pattern that might give a diagnosis. Eretherma Multiforme should have been gone a long, long time ago so perhaps it is something related but different. Waiting it out.
I cry alot (pain and fear and fatigue) but I also still laugh and feel all the blessings that I do have. I have also been able to begin work on a relatively simple quilt that I will use to raffle off for our medical expenses. Anyone who has given me money (and Whitewolf and I thank you from the bottom of our hearts for being so generous and thoughtful) will automatically be in the drawing.
I take comfort where I can - color, warmth, smells, family, friends, being useful and in the antics of my joyful (yet scared) son...and again, thank you for being on this journey. Can I be honest and say that I am soooooooo ready for it to be over?! Big love ,V
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We have a confirmed diagnosis. Pemphigus.
I guess the reason it took so long is because it's rare to begin with and almost unheard of in a person my age. Pemphigus (aka PV) is a systemic autoimmune disorder. Basically, my body is eating itself.
The good news is that the survival rate is now 95% (as opposed to just a couple decades ago when it was less than 20%) and there is a new medication ($$$) that goes into the bone marrow and affects the B and T cells in an effort to reverse the autoimmune response to the normal antigens in my body.<--I think I got that technically correct, but maybe no. It's pretty new to me. The difficult news is that it will take a long time before I can even hope for remission (there is no cure) and the side effects of the medications are very tricky. At least 3 or 4 months more of this excruciating pain if all goes well (my case is advanced and severe) and then a year or more until remission. I am not yet, unfortunately, out of the woods in terms of keeping my teeth, nor of avoiding partial or whole blindness. The eye medications have ceased working and my gums are still disintegrating. (very high on the ICK factor!) I also have to be very careful of the side effects of both the medications: prednisone and the cyclophoshamide.We hope to avoid a bone marrow transplant and bone density loss and the ever popular digestion problems. And, of course, I have to deal with nutrition. I have only been able to take in 500-700 calories a day on a good day lately. I was hospitalized yesterday for dehydration. Also found out that I am losing about an average of 5 pounds a week (60 pounds so far). This isn't the best way to lose weight! So - it's going to be a long haul but I am so glad to have a plan. Ohmygosh I am tired. Whitewolf is too. Could you do me a favor and let anyone who knows me, know about this thread? I am not at all up to emailing everyone but want women to know what's going on with our family. Thanks so much. Good night - Love, V . ----------------------- . Hi all. It's so ironic - as I experience the disintegration of my eyesight and functioning, I also feel the gratitude that I can still weep. I weep sometimes with despair (pain gets to me and fear of the unknown) and sometimes I weep with utter joy. I am flabbergasted with the outpouring of love and support. Those of you who send light and love and money and cards and drumming and energy and prayer - you may never know how *much* it is helping. Thank you does not begin to express my gratitude. The doctors in Santa Cruz are having a field day - photos for the medical journals, consults with the rare Pemphigus specialists at Stanford University, drawings and notes and lots of meetings. Ah - uniqueness. But I do feel like their interest is in my best interest. Even though there has been no change in my mouth and worsening in my eyes, we are all confident that I am on the right track. The medication (Cellcept) goes into the bone marrow and I am wiped out. The prednisone makes me tired and cranky. But I still manage to laugh and love to smell good things and listen to good music. Who can give up on life when there is so much to love?! Well - I suppose there are some - but not me! OK - I need to go, but first three pieces of business - 1. I don't think I've put up the link to www.pemphigus.org - a great site. The PV is the best of all the types of Pemphigus. 2. I am not able to travel but feel the need to be with Michigan women. If you live in the Bay area or know someone (who knows us) who does, let it be known that we would like to have a potluck Thanksgiving at our house in Santa Cruz. We have space and live right on the beach and near the redwoods. It's a lovely place. Let women know, would you? 3. And, if any of you who have had a connection with Parker, want to send a card, he would be thrilled. Mama has been both distracted and getting a lot of attention. He would love getting real mail. Email Bettina (as seen above) and she will coordinate it (bless you, Bettina!) ----------------------- Today has been a very, very hard day. In fact, only your communications (this thread, the birthday cards & the beautiful moonstone!) have made it brighter. My condition is worsening - the skin is just deteriorated down to the nerves. My liver is starting to show signs of distress and my body has begun to take from my muscle mass because my nutrition is so poor. Also the lesions in the throat are complicating things. I am raw physically and emotionally. I think I need a really big boo hoo cry. Nate from Carps will take care of Parker while Whitewolf and I go to meet others who have Pemphigus tomorrow at the International Pemphigus Foundation. I look forward to that. There aren't many of us in this area. I get so much strength from you. Thank you. ----------------------- Hello All - thank you so much for all your good thoughts and ideas. I wanted to explain a little about the immune system, as I understand it. At this point I am trying to suppress mine, not to boost or strengthen it. It's risky but it's the only (reasonable) way to get my T cells to stop attacking the proteins that hold together my skin cells. All those great things for boosting the immune system would make things much worse for me. Crazy, huh? I am able to take in powdered nutrients and have this week added things like mineral oil and almond butter into the shakes to try to get some fatty goodness. And speaking of fatty goodness - Maryasha from Galz just made me pudding! I was psyched. How lucky am I? Chewy came and saved my soul last weekend. And I count the days until Bettina's arrival next week. It has been so unbelievably good to have festival women visit. Whitewolf and I are grateful beyond words. And, yes, Sparky, Parker not only got your card but LOVED it. It was the hit of Halloween! Thank you. There has been no progress and I still deal with terrible pain, disintegrating skin, blisters, lesions, etc. We keep holding out that the medications will work soon. For now, I just try to keep my head above the water and keep the one word that was repeated among the other people Whitewolf and I met who are living with Pemphigus: Patience. My love to you all. V ----------------------- My address is on the way, bearded sister! A friend was asking what it is like to live with Pemphigus. And there are so many things- some I have shared, some I haven't. The physical sensation is very close to having a lighter held a couple of inches underneath my lips at all times and having just pulled my tongue off a frozen pipe. That combined with the feeling that I have sand and eyelashes stuck under my eyelids and the constant pounding of my face make it - well, pretty uncomfortable. The perpetual dealings with sloughing skin cells, blood and drool are just disgusting. I awoke two nights ago with the towel yet again plastered to my face (with pus) in the cooling early morning and felt such despair. How long can I go on with grace and fortitude, I wondered? How long can I be kind and grateful and hopeful and courageous? In that moment, I just could not face it. I had that good boo hoo cry. I despaired. I wept from pain and exhaustion and fear. I was down, down. But before I got too far down, an image appeared. It was me, weak and digested and unable to go on. I was being lifted by a thousand wings, carried to a brighter place that I could not walk to alone. The wings are yours and I do feel gratitude. Good night everyone and thank you. ----------------------- Oh friends. It's been a rough day. I've been keeping a very brave face on but I am crying now. Parker is asleep and Wolf is at a meeting. We're a bit in shock. Maybe a lot on shock. You know how Pemphigus was in my DNA and I thought maybe that the trigger for it was the tannins in chai? Well, I was wrong. The trigger for it was cancer. I am sorry that we don't know very much right now and it's hell not knowing. In some ways it could actually be good news because if the cancer is curable, the Pemphigus will go away probably. OK - this is what we know. I have a growth in my abdomen it is 5 inches x 6 inches x 7 inches. It is certainly cancer but we do not yet know what kind. I saw the oncologist today - just as soon as we got the results back from the CAT scan. He's a good guy and I trust him. He's ordering something called a needle-assisted CAT scan where they insert a big needle into my abdomen and take out some of the cells to put them under the microscope. What we hope is that it is a curable form of lymphoma. And chances are very good that that is what it is. There are so many kinds of lymphoma and we have to have lots and lots more tests - this is just the beginning of a long road. And the Pemphigus will be with me the whole time so - patience is the name of the game. Patience and pain management. The results from the test - best case scenario - will be ready in the middle of next week. They may have to redo the needle assisted CAT scan in which case we won't know anything for two weeks. Although we didn't get into too many specifics because we really have to find out what we're dealing with, I did ask what we would do if it is lymphoma (since he seemed optimistic that it probably is.) He didn't get specific but did say that we could treat (and cure) it with chemotherapy and radiation and medication. We'll talk about alternatives as well. He didn't mention an operation to remove the growth (it is kind of big) but maybe that too? I don't know. OK - maybe you are now in shock. There really is nothing anyone can do now except what you are already doing. I just think it's going to be a long, difficult road. Tonight, Parker asked me if I was going to die. I told him that it is good news and that the Pemphigus will go away if we can get the thing that I am allergic to out of my tummy. I think we'll tell him about the thing being cancer and what it all means (in simple terms) when we know more. Wolf is kind of freaking out. She's trying to stay strong but she is frightened. This is her worst nightmare. And she HATES not being able to fix it. I personally think she needs a boyz night out - I'm asking for some butches to come steal her away and take her to a pool hall where she can play pool and video games and eat sugar and not have to be the strong one. Nate from Carps is working on that. And this weekend dear friend Bettina is coming from New York to help out. That will be a good distraction. I love you all and it is my full intention to get through this. V ----------------------- PS-if you know someone who knows me but doesn't regularly check this site-could you tell them to check it? I don't have energy to email everyone. Thanks. ----------------------- Thank you dearest sisters! You were all with me as I underwent some invasive testing yesterday. I was uncomfortable and scared with all the doctors and technicians hovering with their needles and probes. Quite unexpectedly, the image of your wings was there. Thousands of wings fluttering underneath the gurney, all around the cat scanner, near my forehead. You were saying, "no pain, no pain, we are with you." And then the song came to me, "There's a river of birds in migration, a nation... of women with wings." I sang it softly but audibly (hee hee!) and felt sooo much better. Thank you! ----------------------- We got the best possible news! I am sooooo excited and relieved and grateful!!! I have lymphoma and although it is not "curable", per se, it is very treatable with survival rates measured in the decades!! I start chemo & medications tomorrow. We have to start quickly because the mass is so large. Also we can't go in after it because of the size and location and proximity to so many organs. But with the new medications (Retuxin and something else I just can't remember), we won't need to most likely. I may not even lose my hair!! Chemo for 6 months and 2 month boosters after that with monthly exams. I am incredibly lucky!! AND there is a very good chance that the Pemphigus will go away as the lymphoma melts away. Life is good. And precious. And the pain is bearable tonight because there's a light at the end of the tunnel. Thank you thank you thank you for all of your prayers and wishes and support. Whitewolf and I are wholeheartedly aware that we are not in this alone and it means absolutely everything to us. Hey - speaking of support - anyone want to buy an opportunity ticket? (We can't legally say raffle anymore - how ironic.) I've made a beautiful multi-colored yo-yo quilt throw in an effort to raise part of the $10,000 or so we'll need. It is 4 ft. x 5 ft. and has 900 hand sewn pieces and over 500 different fabrics. The tickets are $2 each and it doesn't matter if people buy one ticket or one hundred. Anyone who has already sent support will automatically be in the drawing. You can get my address through MILO (just email her through this thread) And, by all means, feel totally free to tell everyone you know about this. Every bit helps! Big love to you all- V ----------------------- Pain means I don't sleep a whole lot sometimes and quilting has kept my sanity! Thank you Kim. I took the name down. So- I wanted to give y'all a little update on this, the darkest night of the year. It certainly has been a bit of a roller coaster ride. After we got the very heartening news that this was just going to be a "cake walk" (as my oncologist said), we were psyched beyond words! We went in for my first round of the new wonder chemo called Retuxin. It has everything going for it -no hair loss, no nausea, a miniscule 1% of people having bad side effects, easy as pie (or cake.) I, unfortunately, am allergic to the drug and went into anaphylactic shock. Whitewolf said I blew up like a red balloon, I started seizing, couldn't breathe and - let's just say that I was grateful for the trashcan nearby. This went on for an hour or so with two "epi" shots and something else-it was quite painful-pretty bad. But a bump along the road all in all. We still had the 2CDA chemo with Novantrone - another great chemo combo. So I did a round of that for 5 days. Because my veins are so very small and will only get more so as chemo goes on, I guess I have to have a minor surgery soon to install a "port" under my skin above my heart. It will make it easier to put in the chemo IV. Again - no big deal. Bump in the road. Then we went to see the Pemphigus specialist (Dr. Kari Connolly) in San Francisco. It took forever to get the appointment so we were excited to tell her how well we are doing. We are glad that we did go see her but the bump in the road that she laid out for us was huge. She informed us that I do no have Pemphigus Vulgaris (PV) as we had been told by our local dermatologist, but, instead, Paraneoplastic Pemphigus (PNP)- an *extremely* rare form of pemphigus (one in 10 million incidence.) She said that she didn't want to scare us but that the prognosis is, realistically, not good at all and that this will be no cake walk. The mortality rate is 50% within two years. It doesn't look like anyone lives. Our oncologist, understandably, has never worked with anyone who has the complications that I do so he just didn't know. Blah. We talked to him the next morning and he gave us another bump - the lymphoma cannot be surgically removed because it is so large in my abdomen (that was my guess) and because it has spread everywhere else in me too - along the lymph node system. We didn't know that. He also said that we can't do radiation because of the size of the mass - that amount of radiation would kill me. So. 50%. Whitewolf and I are looking at our LIFE 50% as much stronger and more supported. Our glass is half full and then some. These bumps are big news and it is very serious but it doesn't change the fact that we genuinely believe that we are going to make it through. We're in a wait and see stage. After the port surgery, I start another round of chemo on January 6th. The chemo leaves me very tired and a little ill but it's OK. We'll do 2 more rounds and then do a CT scan to see how much reduction there is. Whitewolf and I have a good analogy. We worked on it together. It's a war analogy (forgive me) but it works. The lymphoma is the enemy. The white blood cells are our armed forces. But there is this weird, untrained and unruly band of our armed forces who have broken away - they are the T-cells- and they are attacking innocent civilians in the villages (of my mouth and throat and eyes.) Our armed forces have to leave the battle with the lymphoma to go focus on this unruly band in the villages. This, unfortunately, has left the lymphoma able to get bigger and spread around without much opposition. The chemo and our support system are our ammunition. Our secret weapons. We even have had to enlist a draft. Starting Monday, I get a shot that will actually pull immature white blood cells from my bone marrow to enlist them in the fight against the lymphoma. So - this is how it looks for us. A fight worth fighting. And you know me - a pacifist who tries to see the good in all, who tries for non-violent solutions. And I hope that I always will stay this way. But for this fight, I say kill the lymphoma. The goodness that it has brought us (making it easy for people to show their love and support) has been wonderful, but it is time to go. On this, the darkest night of the year, I am surrounded by the light of faith and hope. I truly am. I cannot say that I am not suffering - but it is only physical. I am in good spirits. I am heartened and smile when the doctors continue to say how well I am doing. Dr. Connolly said that most people do not look like me and many have died before getting to where I am. I told her that most people do not have the secret weapon of this kind of support system. We have your prayers and your generosity and your concern, your letters, your alters, your drumming. Here's to light and life - Love, V ----------------------- Happy New Year everyone! Well - I went in for the minor surgery of putting a dual port system just under my skin yesterday (above my heart). The nurses won't have to search for veins for the chemo now-they'll just put it right into the port. Hooray! It was a bit disconcerting to come to in the operating room, hearing the cardiologist saying, "This is all wrong! Oncology is going to be pissed. I blame you for this, Steve! This should have been finished long ago-I was supposed to T off over an hour ago!" Hmmmm. No one would answer my questions when I asked exactly *what* was wrong. Except they did say that I have a high chance of infection. But I guess that's because of the chemo? Who knows? Anyway - the whole reason I wanted to update was to say that I have eaten solid food AND fruit juice three days in a row!!! Soups, eggs, YOGURT!!, a really mushy pancake, apple juice. I am sooooooo excited! The food stings and does still cause blisters immediately afterward and I can't really taste it exactly but for some reason, it isn't tearing apart the inside of my mouth. I am thrilled to have something somewhat fresh. Just thrilled! I'm going to try to rest now. I get tired easily and the incision site is sore but I think it will be a good day. My love to you all and Happy New Year! Love, V ----------------------- PS - Thank you all for sending such loving thoughts and emails - Whitewolf and Parker are doing great - Whitewolf is taking time off work to care for him and we now have a good friend (college student) who is living with us in exchange for home schooling Parker every Wednesday and sometimes when we are at chemo. ----------------------- Hi all - well - I am glad that I enjoyed the fresh food while it lasted. I am back to shakes and water and milk. There is one thing that this PNP and cancer is teaching me and that is that disease does not move in a straight line. Up and down, back and forth. I never was a linear gal anyway so it's just as well. The last couple of days have been very very difficult. My eyes are almost swollen shut and they hurt like heck. My mouth is torn and blistered and the vaginal lesions are bleeding (did I mention that the PNP spread there? oh goody.) I am happy to be in my second round of chemo - I feel like I am DOING something. But it wipes me right out. I can't quilt or read or do just about anything that uses my mind or creativity. I HAVE been able to catch up on all the raffle tickets for the quilt though. Anyone who sent money over the last few months is automatically entered into the "opportunity drawing" for the "Cell-ebration" quilt along with those who sent money specifically for tickets. So far we have raised all the money to cover the deductible on the insurance and now all we have to do is raise another $10,000 or so to cover my portion of what isn't covered by insurance. It probably will be much more but that's what we owe for now. Tomorrow I am looking into state assistance. It looks like Ren Volpe and Lynnie Breedlove (and maybe Boo Price?) in San Francisco might try to put together a benefit concert for me somewhere in the Bay area sometime in February. That would be sooooo exciting! I'll let y'all know as soon as I know anything. Let me know if you want to help or if you want to perform and I'll put you in touch. What the heck - I'm just gonna put out my address and phone number. I don't even know why I've avoided it for so long. V Langston-Kingsley, 310 Hillcrest Dr., Aptos, CA 95003 831-689-9660 It takes me a while to get back to people because I really am so tired that I just fall asleep on the couch for hours at a time and everything just takes longer and more effort. But don't give up on me. I'll get back to you. Well - that's my update. I am so grateful for each and every one of you - your prayers and wishes, notes of encouragement and for giving me the strength to move through my days. I am sure that I could not do it without you. I am so lucky. Love, V ----------------------- Hi everyone, I spoke with V last night and she asked me to update all of you who are lovingly following her illness. V, Whitewolf and Parker got bad news earlier this week. V was diagnosed with Stevens Johnson Syndrome. This is a hypersensitivity to certain drugs. It started as what appeared to be a rash but continued to progress. V was initially in a lot of discomfort from the itchiness. But the progression of this syndrome brings with a very dangerous situation for V. Most of her body is cover in bumpy blisters, some worse than others. Her skin was/is discolored, black and purple-ish. The worst is this syndrome causes actual loss of skin. The doctors said it's possible V could loose 50 to 65% of her skin. The skin has been peeling in areas. The kind of peeling you have when you have a sunburn. The danger is when this peeling begins to go more than one layer deep. The doctors have told her there is a chance the peeling will go three or four layers deep and if that happens she will be in danger of getting a secondary infection which her body will not be able to fight off. The doctors have considered sending V to a special burn unit in a hospital in San Francisco. The reason being if the skin comes off in layers of 3 or 4 she will be like a person with third degree burns and again will be susceptible to infection. All of this is very dangerous, life threatening. The good news is V is getting a treatment called IVIG or IGG. This is the infusion of a clear blood product. Wolf said with the first treatment, which was yesterday, V's skin immediately started to regain it's natural color. She will get 4 doses a day until Monday. The crazy thing is each dose is about $10,000!! This treatment should also help the pemphigus. Crazier still is their insurance company would not cover this treatment for pemphigus alone but will cover it now that V has been diagnosed with Stevens Johnson. V is pretty wiped out these days. Not able to get on the bb. Between the chemo and treatment for dehydration and the pain and discomfort, she is having hard days. She had stopped driving even before the SJS (Stevens Johnson Syndrome) because she is losing her eye sight. The doctors fear it will never be restored fully. V spoke a bit about the doctors continuing to say they don't know how she is still alive. V feels there must be a reason bigger than herself, bigger than all of us that she is still here and fighting. She believes it has a lot to do with our collective intent. The intention is powerful. All of the healing energy that has been sent out into the universe. She has such a way of putting things. I wish I had tape recorded our conversation last night so I could type exactly what she said. So eloquent, so full of hope and faith even in these darkest, hardest moments. She had hoped she wouldn't loose her hair due to the chemo but it has started falling out. She and Wolf will do some kind of ritual and cut her hair. If it still continues to fall out then they will shave it. One thing I did write down is what V said about being a believer. She said she is more of an observer than a believer. If you ask her is there life after death she might say when a tree falls in the forest and from that tree moss grows then she can SEE there is life after death. She sees that she is still here after all the things that have been happening to her despite what the doctors say so she SEES there is a reason for her to be here. Some folks have asked what they can do besides sending money and energy. V told me her all- time favorite holiday is the pagan holiday Imolc (also known as Bridget’s Day). It is the feast of light and happens on the eve of Feb 2nd. She told me it is the celebration of the seeds that are waiting under the cold hard ground to be reborn. She said the seeds are down there shivering but that that means they are alive. It's a sign of faith and hope, knowing they will return. It is a celebration of artists and poets. She said if anyone wanted to get their friends together and think of her on that day and write poems or paint or do anything creative she would love that. Or just draw something when you are alone. This is a really long post so I'm going to try and sum it all up.....V is in a life threatening situation right now. The SJS could kill her if it progresses. She is getting really good treatment for it and hopefully we can go back to dealing with the pemphigus and lymphoma. She is losing skin but we hope she will not get an infection and have to be hospitalized. I will post more as I know it. She loves you all. Your thoughts and energy are helping hold her up. Thanks to all of you!!!! Love, bettina ----------------------- Oh my gosh - the pain is not describable. Nor the gratitude. My lips are charred black. My entire body is blistered. I can barely see. My hair is shorter than Whitewolf's (I have 13 braids on my altar!) But you are all here and there are miracle drugs that are keeping me from losing all my skin and there is pain medication so I do not go insane. We have thus far avoided having to go to the burn unit. The deep peeling is only on my chest and neck and no infection so far. Whitewolf deserves a purple heart. I am weak and truly the colors of this world are very dim. I am on my knees, head bowed in humility for the amount of love that is available to me - to us all. I must go - too much pain. But wanted to give you the good news and take in the prayers. Much love- V PS = Nedra and Cassandra just moved to LA from Philly- don't know that they have a place of their own yet but will soon. ----------------------- hi this is Whitewolf, v is too tired to post due to her chemo- she asked me to type this for her: my heart is overflowing with gratitude, amazement, and love. (make that both of us) although I am weaker physically than I have ever been, my spirits are not. the IVIG treatment (pooled blood product- white cells- at $5000 a day) seems to have stopped the progression of the rash and burning. the next few days are critical and all of this care and intention can do nothing but help. I think I’m pretty lucky, all things considered, because only 60% of my body had rash, with 30%-40% superficial burn (like a bad sunburn) and only 5% had serious burns. I’m suffering from thrush, serious constipation, and yeast infection due to the plethora of medications, and the chemo wipes me out. but I see a light at the end of the tunnel. I cannot thank you enough for holding the light so that I can see it. love, v ------------- hi all- so v insists that I write something- I too am wiped out and don't have much energy for this sort of thing. I have taken time off from work to care for v and parker. the congregation that I work with has been very supportive. I am overwhelmed by all that must be done on a daily basis- including cleaning the damn house which never seems to stay clean! and the dishes- your generosity has helped to alleviate much of our financial concern, although the bills continue to pile up! parker is holding his own wanting to spend more time with friends than at home, who can blame him... but he is talking about his fears and concerns with us, so we feel pretty good about where he is and how well he is managing the situation. thanks for all the continuing support, it means a great deal to v and to parker and I! shanti, whitewolf. ----------------------- Hi everyone, doesn't seem possible that it was a week ago that I left those girls and the boy in Santa Cruz. I was able to go out there for six days and help out. It is amazing to see all the cards and letters for V and Wolf and the packages for Parker (Lorraine, you rule!!!!) They appreciate all your love so much. I wanna give a huge shout out to Whitewolf. Wolf just keeps moving through the moments, getting all she can done. Taking amazing care of both V and Parker. Taking care of her family. I will be the first to say personally that stepping into the role of the stay home mom was daunting to say the least. Taking care of a family is a big big job and Wolf has stepped up to the plate (if you will) and is doing a great job. I love her so much for her strength and hope she remembers she can only do so much and it's totally okay to be 'done' for a few moments here and there. It's okay for her to be 'small' if that's what she's feeling. As I write that I'm smiling at myself wondering when Wolf will ever give herself that room. V had some very hard days while I was there. The SJS (Steven's Johnson Syndrome) was under control as far as her skin was concerned. Yeah for the really expensive miracle drug IVIG that the insurance company decided they would pay for. It probably saved V's life. But the SJS and PNP (pemphigus) are just ravaging V's mouth and lips and vaginal area. Her lips are pretty much down to the nerves and are always bloody. I experienced first hand her getting her lip stuck to a glass as she tried to take in one of the only forms of nourishment she can. A high powered protein/veggie shake. It was hard to watch as she broke down crying knowing she had to pull the glass away leaving part of what's left of her lips on the glass. Each morning she has to face the task of ripping her mouth open, slowly but surely. See, when she sleeps and her mouth is all but closed (she never puts her lips together) the skin inside her mouth starts to heal together but it's healing shut. So each morning.....rip! The other chemo patients and nurses at the office where V gets most of her treatments are great!! It was cool to see them all getting their chemo and caring about each other and exchanging med stories of what's working, what isn't and just loving and supporting each other. Those nurses rock!!! I spent a lot of time with Parker. I would get up with him in the morning so V and Wolf could sleep in (if V slept at all). By the end of my visit Parker and I had our routine down. A little play time before breakfast then reading to him before he went to school or off for a play date. I miss him. He's is definitely being affected by his mom's illness. He says he likes that he gets to play at his friends house more now that V is sick. But what he really wants is his family back the way it was. He would normally be home with V doing home schooling or any number of things in his house with his mom. But V and Wolf's community in Santa Cruz are really helping by inviting Parker over a lot. I actually miss playing 'mom' in the mornings. It's really something to learn first hand that a kids needs come first....his breakfast before my shower ! The last morning I was there V woke up to the a 'rumble' in her chest. A rattley cough. It was also a particularly hard morning getting her mouth open. It was practically sealed shut. Very painful. The raspy cough really scared V because if the SJS or pemphigus goes to her respiratory system it's a really bad sign, again a potentially deadly thing. It was that morning that V decided it was time to get her Dad off his Merchant Marine Ship which was somewhere near Turkey. V is very close to her Dad and had been struggling with whether she should have her Dad come. It was so hard to tell when would be best. It really really is a roller coaster illness. One day she's fighting off some deadly side effect and may not make it and then there's a turn for the better. I think it will be good for her to have her Dad there in Santa Cruz. She was also worried for him bing in the Persian Gulf with war looming in the air. Now he is safe with his little girl. Okay, seems hard to wrap this up in a neat little update but....V had a cat-scan done the day I left. They got the results and the news is GOOD...imagine, good news. The mass in her abdomen has shrunk to about half!! So the chemo is getting the lymphoma!!! V's dermatologist, Molly, rocks so hard!!! She was able to get V and appointment with a head pemphigus doctor in Sacramento . I haven't heard the results of that appointment but the plan was to discuss a plan of attack to get V's mouth and vaginal area out of danger. This guy apparently is THE guy. V is on strong pain meds but V being V...they only 'take the edge off'. She is a tough gal I tell ya. But taking the edge off means she is in a lot of pain most of the time. I guess that's all for now. I know she'll probably read this and wish I had put in this or that but....my little head is full and there's so much info. I will update everyone again if V is not able. Thanks for all the love, prayers and energy you are sending them. They feel it and I felt it while I was there. Love and peace to all, bettina ----------------------- Hello all - I feel like I am stepping out of a cave for a moment to see you but I'll have to slip back soon- I get so tired. I am down to 158 pounds (I was at 248 at fest), am losing my hair and my vision and every now and then - my hope. Mostly I can keep my head above water but I am scared. We saw the one expert in the Western US for paraneoplastic pemphigus - he is at UC Davis (a teaching hospital). He has actually seen and treated people with PNP. No one else in SF or Santa Cruz has actually treated it. So that is good. He ordered a very specialized test from Baltimore MD to make absolutely positively sure that it is PNP that we are dealing with. There is a minute chance that I could have a severe case of PV (pemphigus Vulgaris) instead of PNP in which case I would take a different course of action. In any event, we are only shooting in the dark anyway because it is so rare. This expert that we saw in at UC Davis has only seen 5 PNP cases in his career. I asked how many of them survived and he said none. But later he modified that to say that one had made it all the way through the PNP but later died of a heart attack. PNP is tricky. I have to keep it out of my lungs and it sure would be nice if I could get relief from the mouth stuff. We had hoped (and were incorrectly told) that if the lymphoma went away, the pemphigus would go away. But there is actually no known correlation. Blah. I have to get rid of the lymphoma anyway so I am glad that chemo is going so well. But it is really the PNP (if that is what I have) that I have to worry about. The cool news is that if I do make it with the help of this IVIG, it will be a world-wide breakthrough. It could save lives. I don't mind being a guinea pig! Also I will be part of a physician's forum here in Santa Cruz where doctors from the entire county will be invited to come see me and ask questions, etc. No one here has ever seen an actual case. Pemphigus is so often misdiagnosed and I would do anything to help just one person not have to go through this. Oh! Parker picked the winner of the quilt on Valentine's Day and it goes to Ms. Anna Myers of Vermont. Some of you may know her through the Belly Bowl crew circa 1994. We raised a good deal of money through many communities and I cannot thank you enough. Well, I need to go for now. I am having a hard time but am really trying to keep up my spirits. Thank you for helping me with all of your thoughts and prayers. I feel them and thy help. I'll let you know when the test results come back from Baltimore and what we will do when we find out. Love, V ----------------------- Hi all - the test from Johns Hopkins in Baltimore came back positive for the PNP - so we are officially dealing with the unknown in terms of treatment because so few people have lived long enough to figure out what works. The experts say that all we can do is shoot in the dark and try the IVIG (the pooled blood product that raises my antibody levels and (hopefully) flushes mine out and the immunosuppressant drugs (metaprex is like prednisone but doesn't go through the kidney first and cyclosporine - an anti-rejection drug traditionally used for transplant patients.) My immune system is seriously compromised at this point so I have to be wary of infections, any opportunistic diseases, travel, crowds, etc. I'm also doing body work to support myself and count on the power of collective positive thought! Every day is different. Sometimes I am not strong enough to get out of bed without help. Today I took a long walk on the beach. Sometimes I can barely swallow water and other days I drink soup or eat eggs. Thankfully there are good days because the bad days make me feel so weak. The good news is that there is actual flesh - intact and whole- in my mouth now and all the burns are gone on my body. There is progress and I get a whole week off chemo (it's the first time I have not gone to the clinic in something like 7 weeks!) OK- I need to go - my eyes are strained. Love, V ----------------------- Wow!!! I just got off the phone with Whitewolf and I want to share some up lifting news. I didn't get a chance to speak with V directly because she was out at her Dr.'s office getting her IVIG treatment but WW says V is doing better!!! She is a lot stronger and was actually in the yard doing some gardening this past weekend. I know she loved the fact that she was able to get her fingers into the dirt, the earth. After her treatment today she is off to Parkers school where they are having a science fair. Her dad, Gordon, is on his way back to his ship via Rhode Island and probably Maine so I'm not sure how V is getting around but I'm betting she is not driving herself due to her poor eye sight. But still, the fact that she is up and about makes me smile soooooo big!!! I'm sorry I don't have any more details but when I speak with V tomorrow I'm sure she'll fill me in. Just wanted to share some of the good stuff!!! Peace to all, bettina ----------------------- Geez Louise! I got on the BB to tell you my good news and it's already here!
WW was telling the truth. My lips are intact and I can drink from a glass. I can kiss my sweeties goodnight. I can pronounce the sounds of p and b and m and v. It's very exciting.
I am eating soft foods - still am not yet back to eggs or oatmeal as they get stuck in the lesions between my cheeks and gums. My tongue is still a wreck and I can't taste much. It gets swollen and I can't talk correctly sometimes but those times are getting fewer. It's OK. When my tongue is better and my lesions are gone, I am looking forward to a Maine lobster dinner (courtesy of my sister) with spinach salad and baked potato and chocolate cake for dessert!
These last few days have been the first time in a looooong time that I feel as if I am 100% going to make it. I've tried, for the sake of so many people, to keep optimistic but there was part of me that's realistic too. I knew what what was happening to my body. I knew how weak and depleted I was. I knew that the prognosis was less than poor. But today, I think I might just beat it. At least enough to get into remission for a while.
I told my oncologist and my dermatologist that I MUST be well enough to make it to festival. They can't give me the green light yet because my immune system is pretty compromised right now but I am making plans as if I will be all better. In fact, that reminds me - I guess I'll have to make a trip to the thrift stores to find lingerie in my new size. I would fall out of my old lingerie. I went from a 26/28 to a 12/14 (that's an XXXL to a Medium for you butches out there). It's very strange to have a different body. I miss my old one but am trying to get used to this one. Love myself no matter what. That's a good plan.
I should go but I want to thank all of you for your love, your sharing of miracles (I can see those snowflakes, Toby), your generosity (Sparky and Lorraine - your intuition about Parker is just right. He adores your care packages) and your personal updates (Susan, you have no idea how it makes my day to picture you as you describe your everyday life. It makes me smile.) Thank you all.
Our web of women is so strong, so delicate, so full of possibilities. Look what we can do!
Much love - V
PS - I just finished an IVIG week and next week is chemo so I will probably be very tired. I'll most likely check my email in a week or so. If I don't write back please don't be offended. It's a bit much sometimes but I sure do appreciate your support!
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