Jacqui (jacqui) wrote,

Brave Weeds
I want to be like this beautiful weed.

Hi Everyone,

It's the beginning of Burning Man, and sadly, for the second year in a row, we're not there. I've already been to Google Earth to try and gaze down and feel connected to our friends in Kidsville.

Burning Man is like manna for me. It is a spiritual center that fills both of us for months afterwards with love and creative energy, and it certainly helps gets me through the year. My calendar begins and ends with August because of Burning Man. There really isn't anything like it that I have ever come across in this world, other than maybe making love or scuba diving, but you try doing either of these for seven days straight without stopping, it can't be done.

I'll post photos and links as soon as friends send them to me. Since Internet service is pretty tricky out in the middle of nowhere I can't know when this will be but I would like to show you some of the imagery that barely approximates the feel of what it is like to be there surrounded by so many like minded beings, surrounded be this powerfully vital creative energy.

I'm still waiting for a surgery date for the lap band, or O-Band as they're now calling it, that I'm going to have added to my gastric bypass to put an end to and reverse this weight gain. I've been on hold for this surgery date all summer but hopefully this should happen in the next week or so. More importantly I need to be here for my Mother whose cancer has spread throughout her body. It's showing up almost everywhere except for her brain. Next week we're going to get third and fourth opinions from oncologists at the Norris Cancer Center.

Mom's lung cancer surgery was exactly five years ago, which is one of those dates that every cancer patient waits to mark off on their calendars to count themselves fully cancer free and in the clear. Then roughly two years ago a tumor turned up on her ovary that her oncologist at Cedar's thought we should keep obviously keep an eye on. A little over a month ago we learned that it had gone through a little growth spurt, growing in size from something that was about the size of a golf ball to something the size of an orange. My Mom's oncologist wanted to remove it after he gets back from his summer holiday, around the first week of September, but my cancer warrior friend Mary was against it and called on all of her bright resources to get the information we needed to make the informed decision to hold off. She was right, of course. She always is.

Shortly after the OBGYN oncologist delivered the news about the ovarian tumor's sudden growth spurt, another oncologist told us that something was growing in a flap outside my Mother's lower bowel. After a blood test to confirm what everyone was already thinking, all of her doctors wanted her to have a nuclear scan. This particular scan "lights up" areas of cancer in the body. Mom's body lit up all over the place. I am in serious denial. So is Mom.

This type of cancer does not respond well to chemo and Mom, at ninety-one, is too old to withstand it. There is little point in doing surgery for about a dozen good reasons. There is a medication that can suppress the symptoms but it often causes the very same symptoms it is meant to suppress. The last oncologist that I spoke with said that this cancer grows slowly and that she could live another five to ten years before having any symptoms. When I asked him what the symptoms would include he said, "Flushing, diarrhea, stomach complaints, weakness." She has been having all of these symptoms for years, and is becoming more tired and forgetful by the day but again, she is in denial and so am I.

I have a new therapist. This is a good thing since my last one, who while I still love her very much and wish her all the happiness in the world, freaked out and disappeared for a while before returning and making even more of a mess of things between Scott and me.

I had a kind of panic attack today and my new therapist helped me realize that aside from the three or four dozen seriously stressful things I am juggling right now, I was really upset because I've been pushing down my feelings about my Mother; the panic I feel about the idea of losing her, not knowing what is going to happen next, how best to support and help her, what she is going to go through, will she be in pain, and what will my life be like without her? Never mind that she's doing strange things with her will.

This kind of stuff has always been too delicate and difficult to write about here, some people don't understand or react well to the complicated issue of money between my family and myself, so I'll just state as strongly as I can that I would rather have my Grandparents and my Father back than a dime of their money, and I would certainly rather have my Mom remain with us for the rest of our lives so that we can all be together forever.

I would rather have my Mom than her money, period. She knows this. I love her intensely despite everything that we have put each other through and I will be desperately lonely without her. We are intimately connected, and in many ways she is my closest friend. So when I mention the issue of wills and inheritance it is because she is the one who has and is always talking about money, she is the one who has spent my entire life telling me how "wealthy" I will be one day, and for better or worse I am financially dependant on her. Frankly it's scary when you are counting on your own Mother to make the right decisions for your future but she is putting them in the hands of someone who doesn't really know you and whose limited knowledge about you is based mostly on the negative things he has been told about you when she is upset.

I just can't risk saying any more about this now because I am so stressed that I honestly don't want anyone to come along and attack me here for writing about two very different issues in one entry; the terrible fear of the loss of my only remaining family member, (Other than Beau), and the other being that when she does leave us we may be in a difficult position because the government will need us to come up with 1.5 million dollars just to pay the estate taxes and we don't have it. We'll have to sell something or put a loan on something, which means less income, less income than the income that isn't keeping us all going now.

Have you ever heard the term cash poor? Well, that's us right now, and Mom, who has always been a kind of lazy money manager, certainly an overly conservative one, is tying up the trusts so tightly that not only will we never touch the principal, but she's tying up the interest as well, and putting Beau and me in the position of possibly being at odds with one another.

While it seems distasteful and cold to write about something like this, I just want you to know clearly that my own Mother talks about this more than anyone, I'm the one who always tries to put off these discussions, but her age alone is reason enough to consider that she will be leaving us soon. This means that our lives are going to change drastically one way or another at some point in the not too distant future and I have to talk to her and our attorney ASAP about some very uncomfortable things. I don't know if they will hear me or respect my wishes at all, but I have to try, and it is scaring me crazy.

There are a lot of people and animals who depend on me for their survival and my Mom, her attorney, and her secretary don't really get or care too much about this. Employees are second class citizens to my Mother, not the very real family they are to me, and animals, well, animals are disposable. My generous nature and my intense need to rescue, adopt, and nurture so many animals is the very reason they distrust me so much, which is so incredibly unfair given the many wise financial suggestions I have made over the years that would have more than quadrupled our net worth by now, but let's change this terrible subject, shall we?

I need a job, but what kind of job is going to pay me as much or more than I pay my own housekeeper, and how am I going to be able to work and be available for my Mother who is going to be completely dependent on me for her comfort and care? I am her only relative or friend under the age of seventy-something. I would have said ninety-something but she does have one friend in her late eighties and another in her seventies, but she hardly sees them.

In other news my friend Betsy is back with us and I am overjoyed about this. I love Betsy very much. She is one of the funniest and smartest people I know. I think I may have mentioned that she had breast cancer surgery and then opted to have an elective double mastectomy where she traded out all of her healthy breast tissue and nipples for the peace of mind that will come from knowing she won't have to worry about breast cancer reappearing in her breasts. The surgery lasted six long hours and afterwards she was so unstable for so long that she ended up in the cardiac ICU.

She flashed her lovely nipple-less breasts at me yesterday so I returned the favor and we all had a good laugh at our Fuct up boobs. Betsy's look great, except for the wide scars that run right across the center of each perfectly formed breast, but they're still beautiful, and these scars will soon be turned into nipples through some magic of reconstructive surgery that I don't understand.

Ana and Matt's Darling Baby Lili
Beautiful Baby Lili Who Makes My Heart Beat With Love For Her : )

My friend Ana's newborn baby Lili has Down's syndrome and both she and her fiance M. are amazing model parents who are inspiring us all in such a way that it seems as if this was meant to be. I wonder how many people, how many families, how many children's lives will be helped by Ana's choice to live her life so openly on cam, especially now that we will be watching the development of this sweet little baby who we are already in love with. Even now I have so much more of an understanding of Downs, so much more compassion for people who were born with it, as well as for their families and friends. Even Beau has been talking with me and learning more about it because of Lili.

Laurie Duncan's Lili Cupcake Faeries

I asked my friend Laurie to make these beautiful little cupcake faeries for Lili. Ana loves keys which is why the second L faerie is holding one. Laurie is an amazingly talented artist who brightens up my world. You can find her work on ebay under the name happy_as_a_lark, and her pictures on Flickr under bewitchedmagic. She also made these adorable cupcake faeries for another friend of mine.

Baby August's Present by Laurie Duncan

My friend Atra's Mother, who is also my dear friend, went in for a knee surgery and had a stroke. She is bedridden and barely makes sense. She thought her nurse was me and kept calling him by my name. This is the second knee surgery she has had in less than a year and because of the stroke she has been unable to comply with the doctors' orders to walk and move her knee, so the outcome of the surgery is so poor that she is going to have to risk another surgery to correct this last one.

I am trying to think of some positive things to say. Positive ways to spin things but I wonder if this isn't more for myself than for you. I DO believe that everything happens for a reason and that this is the school planet; Planet Reality where we all signed up for as much as we could handle -- no more, no less -- before we ever took form. I have to believe this, no matter how random and cruel things may seem.

I choose to see meaning and beauty in everything, even the saddest, most cruel things, like dog fighting. How do we know that the souls of those dogs didn't choose to come here to experience that suffering so that attention would be brought to this evil that cannot be called a sport any more than hunting an innocent deer or a rabbit can? Who is to say that there weren't moments in their short lives that were important to them and that furthered their souls' growth?

And if all else fails, as long as the electrcitiy and the cable bills are paid, there's always television.

I guess if someone asked me to write one or two sentences about what I did for my Summer vacation I would focus less on the part where I was spewing blood hospitalized in Mexico, almost getting dumped by my beloved, finding out Mom's cancer has come back strong, and sitting in rooms surrounded by bald people who look like they could use a good laugh, and who I long to reach out to and cheer up somehow, and say that I have been enjoying taking photographs, playing around on Flickr, building back my relationship with Scott, spending time with my son, loving and being good to everyone I meet, and worshipping at the altars of art, sexuality, motherhood, and nature.

I love you gals/guys. I miss you. I pray that you're all happy and well. I am always hoping to be able to check in more and reconnect.

Your Friend -- Jacqui

Little Odile
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