I wasn’t about to give up the fight!

In a previous issue of BABES Talking I wrote a small article on some of my experience with lymphoma. This time I’m going to share a little more about that experience. There is so much more I need to express with you, and it will come out in scrambled pieces. My head is so full - it’s difficult to get it in some kind of order. I hope you all don’t mind and please know that I would welcome any input.

The chemotherapy went reasonably well. My anticipation was much worse. I was fortunate not to have the violent side effects that so many have. It did make me bone tired and I wasn’t able to do much. That part was the absolute hardest for me. It is so difficult for me to ask for help or to accept it. God never stops teaching us lessons. There were days I couldn’t get out of bed, and it was a real challenge to make it to the bathroom before I wet myself. I didn’t have much trouble with nausea and vomiting as is most common, though, but I did lose my appetite entirely and lost 45 pounds in a very short period of time.

Because I had lost so much weight, I really looked horrible - nothing but bones with skin hanging off from them. Chemotherapy makes one lose muscle mass, so I am not making up stories. I also have a line that goes through my chest that wraps around my heart into a main artery. This makes taking blood, receiving blood, and receiving chemo so much easier for the medical personnel and more comfortable for me. I lost all of my hair. It was kinda nice having that smooth, silky bald head. It was as smooth as a baby’s bottom! It was a snap to take care of it!

There were weeks at a time I could not leave the house except to go to the doctor. My daughter would take me or I’d take a taxi. I just couldn’t take the chance of driving. My reflexes were slow and because of all of the medications I was taking my vision was affected. It was sometimes very blurred and it was difficult to focus. I became so weak it became difficult to walk and I couldn’t hold my head up except for a couple of minutes at a time. All of this was bearable for me. My wonderful doctors were extremely supportive and I was told what to expect every step of the way. Even though, I would get so scared - afraid I wasn’t going to make it. This old body had already been through so much with drug addiction and all. How could it be possible to make it through this? The treatment for AIDS and the cancer at one time had to be more than any body could tolerate. I was being pumped full of some pretty powerful toxins developed to kill. Surely I was going to die.

My whole being was engulfed with the thought of death. I’d be shrouded in sadness and grief for days at a time. I couldn’t see enough of my kids or hear enough of their voices. I’d try so hard not to show my fear. It broke my heart to see what my illness was doing to my loved ones. They would use every bit of their strength to put on a happy face, but I saw that terrified look in their eyes and the fear they felt every time they left my side, as if it would be the last time they’d see me. Oh dear God, I don’t want to cause those I love so deeply such pain. I finally realized I wasn’t always hiding my fears as well as I thought. That’s when I noticed their fears increased. So this became a signal for me - a signal that my mind was taking a bit of a dive; I wasn’t about to give up the fight! It was time for me to regroup. This signal was just what I needed. My depression would disappear and I’d focus on getting through the ordeal. I’d be O.K. until the next time the blues would creep in.

My husband could not bear to see me so ill and watch as I physically changed, although he didn’t show a lot of compassion. I thought it was because of his own fear, but he would chastise me for looking so bad. The tube in my chest made him nauseous. He claimed it turned him totally off and he needed his sex. He couldn’t even look at me without cringing let alone touch me or kiss me. During this time I went on a weekend retreat with BABES. I had showered before heading for the bed. On my way from the bathroom, I happened to catch a glimpse of my naked body in a full- length mirror on the door. I was horrified at what I saw! I took a step backward and stood there staring at the image in the mirror. That was NOT me! It was a creature I’d never laid eyes on in my life. After accepting the fact that it was indeed me, I cried myself to sleep. I definitely would have made the perfect bride for the Crypt Keeper! Ha!! Ha!!

He sometimes would cry and beg my forgiveness for feeling as he did; and he’d promise that he would get through this with me. We both knew the physical changes were only temporary and that once the therapy was over, things would begin to return to normal. But in the end he could not handle it and left me high and dry. He made sure he drained my bank accounts first. He ran off to California with the lady that lived across the street. There’s a whole sordid story behind this, but it’s appropriate only for the National Enquirer. However, initially I was crushed. How could any human being do something like this to another at a time like this? After ten years you’d think the very least he could have done was stick by my side until the worst was over. But then with his leaving a sense of relief came over me. I could sleep whenever I needed to without apologizing to him for sleeping so much. I could be alone at times and cry when a good cry would alleviate some of the stress without being yelled at. And I wouldn’t constantly be reminded what a hideous looking creature I’d become. In peace and love, Julie.

…To be continued next newsletter.

I felt like a zombie...

My name is Gary Hudson. I am married and my wife Deborah and I have two boys, ages six and eight. I had been an IV drug user for about ten years when I found out that I was HIV positive in the late eighties. I think knowing I was HIV positive helped me justify my ongoing narcotics use… why quit when I would probably be dead in a few years anyway? So I pretty much blocked being HIV+ out of my mind until 1990 when Deborah found out she was pregnant. Deb and I had never planned on having a family for obvious reasons. We didn’t know anything about the rate of transmission from mother to baby or how having a baby would affect Deborah’s health. Deborah’s doctor referred us to the Northwest Family Center as a clinic that specializes in HIV+ women. Deb received great pre-natal care, and they enrolled her in one of the first AZT trials in our state to test its use in lowering the transmission rate of HIV from mother to baby. Because she was on the study her pregnancy was monitored very closely and I think this gave us every assurance we were doing all we could to ensure a healthy baby. I cut the cords of both of my sons’ births, and it has to have been the most incredible thing I have ever witnessed. I am sure every parent can relate to that first time they saw their child, flooded with emotions, imagining their future, etc. But as healthy as my two boys looked, I still had that awful thought in the back of my mind of what if they are HIV+? I tried to never think of that possibility. Back then I don’t think they could tell your baby’s HIV status for the first year. I know it seemed like forever until we were assured that each of our boys was negative. They were both checked periodically the first two years for side effects from the A.Z.T. and they are still checked yearly as part of the program. Not long after our second son’s birth my health started to deteriorate. I hadn’t had my blood work done in a few years, and when I did my T-count was about five hundred. The Northwest Family Center made an appointment for me at Madison Clinic. I had my blood drawn and was informed that I had thrush. My T-count came in at just under two hundred. I was started on A.Z.T. and some other infection-prohibiting drugs. Month by month I was getting worse… I had night sweats, high fevers, and had developed a pain in my throat that made it difficult to swallow, which resulted in losing weight rapidly. In late 1993 they sent a scope down my throat and discovered two nickel sized ulcers on my esophagus. I was diagnosed with C.M.V. of the esophagus and thus began my four-year marriage to an I.V. pole. Shortly after my C.M.V. diagnosis I had a Groshaun catheter placed in my chest to enable me to do I.V. medications at home. A nurse came to our home and trained my wife and I how to operate the I.V. pumps, install the I.V. tubing, change bandages, give injections, and all that nurse stuff. The nurse came to our home twice a week and drew blood and gave me check-ups. I was constantly hooked to the I.V. pole if I wasn’t running in medications, and then I was doing T.N.P. or fluids for nourishment. The medications didn’t seem to be working and I was constantly running fevers of one hundred and five and one hundred and four. I was constantly dripping sweat and freezing at the same time, and my weight had dropped down to about one hundred pounds. My doctor had given me about another six months to live if there wasn’t some improvement. I was afraid to go to sleep because I thought I might not wake up. It took all my strength just to stand up, let alone try and walk anywhere. I felt like a zombie. I existed like this for a couple of years, in and out of the hospital with PCP and pneumonia and other opportunistic infections. Gradually Gancyclovir healed the ulcers in my throat and I added some new anti- virals to the A.Z.T. and other medications that I was taking. Slowly I started building back up four or five pounds a month, and in 1997 I added a couple of Protease Inhibitors to the combination of other medications I was taking. I have had an infection free existence for two years now. My T-count is back up around two hundred and I had an undetectable viral load until just recently. Today I take my medications religiously. I don’t believe it was by coincidence that I improved, and I spend my days being Dad while my wife works. I believe I would have died in the hospital, but being with my family was a constant reminder of what I had to live for (to be there for my sons). I can’t change the fact that I am HIV positive, but I can learn how to be the best parent I can in the situation. This past spring I attended a conference in Washington D.C. called ’Voices ’99 where I met a group of HIV+ fathers and fathers of HIV+ children. They had formed an organization of the same called F.A.T.H.E.R.S. Voices. There were fathers from all over the country, including Chicago, N.Y., LA, and Colorado. There were black, white, Latino, yet they all could put their cultural differences aside and focus on how to help each other manage HIV in their lives. I could easily identify with their message, which was that to be the best parent I could be. That meant I would have to be informed on all the latest medical news, what services are available in the community and how to access them. I saw that fathers could share this information amongst themselves and support each other. I am organizing a chapter of F.A.T.H.E.R.S. Voices here in Seattle that will be offering workshops, support groups, and a forum to address issues that face us uniquely in our situation. For more information, contact the BABES’ office at 206-720-5566, extension 47 and leave your name and number on my voice mail, and I will contact you with times and dates. All messages are confidential.

F.A.T.H.E.R.S. Voices
Fathers Association Team for HIV Education & Resource Services

An Organization for Fathers affected by HIV/AIDS to share information, give and receive support, and address issues they face.

This is the first series of support groups of fathers coming together to provide support for each other and address issues that are unique to being a father.

The first two F.A.T.H.E.R.S. Voices meetings will be held on Monday, November 15th at 8:30pm, and Monday, November 29th at 7:30 pm at the BABES office. Refreshments will be provided!

Old Spaghetti Factory

Come join us for an evening at the Old Spaghetti Factory! Mmmm… garlic bread, salad, spaghetti, lasagna, or fettuccini, and spumoni for dessert… are you there yet? We’ll meet there on Wednesday, November 17th at 6:30p.m. If you need a ride, meet at the BABES office at 6:00p.m. It is very important that we’re on time, because if we’re late they’ll give away our reservation. We definitely don’t want that to happen! If you need directions, call us at the office, (206) 720-5566.

Memorial for Allison

Because you were her friend, we would like you to know, While surrounded by her family and friends, Allison “Ally” Hunter passed away on September 24, 1999 at 3:31a.m. She will be missed by all whose lives she touched… In honor Ally place join us in a gathering! To share our mixture of Sadness for our personal loss, Laughter in our memories, and our Joy for her spirit being free.

Date: November 21, 1999
Time: 5-10 p.m.
Place: The Arboretum (call BABES for directions)

It’s going to be a party (we’ll provide the main dishes and beverages) Please bring a side dish, appetizer, salad, or dessert.

If you have a special picture that you love, make some copies to share with friends. (Xerox copies will do) Please RSVP to Liz @ (206) 725-1944 If you’re coming from out of town, please call to let me know if you are in need of accommodations.

(Note to BABES - It is very important that you RSVP to Liz so she’ll know how many of us will be there to plan for food, accommodations, etc. Thanks!)

Tarisa, the BABES’ artist-in-residence is requesting “something” from BABES who knew Allison Hunter and would like to share some memory of her. That “something” is small and lightweight if possible (a charm or milagra or some other memory item). The reason is, Tarisa has a beanie baby parrot and it will be on a small, swinging perch, and we would like to attach these charms to the perch. This will then hang in the BABES office for all to see and remember Ally.

Arroz con Gandules

Ingredients:
1 can gandules
1 1/2 cups rice
3 cups water
3 oz. salt pork - cubed
2 packets achiote*
1/2 teaspoon
3 cloves garlic
chopped 4 peppers (red, yellow, green… whatever)** cut into pieces
a small handful of fresh cilantro leaves a few (6-10) green olives 1/4 cup tomato sauce 1 tablespoon salt 1 teaspoon capers*

* gandules and achiotes are found in most supermarkets. Generally, your grocer will have a small section of products with the “Goya” brand. The gandules come in a blue 15 oz. can with a lovely picture of them on it. Achiote is a seasoning, and it comes in a little 3-inch by 4-inch tan, pink, and orange box labeled “sazòn Goya.” It contains MSG, so if you don’t want to use MSG, substitute a teaspoon of coriander and a teaspoon of cumin. Capers come in a jar (a wee jar) and are usually near the olives.

**You can either cut up the peppers and throw them in uncooked, or you can roast them in the oven. To roast, simply cut the peppers in half and place skin side up on a cookie sheet. Rub olive oil on the skins and broil in oven for just a few minutes. The skin will curl up and start to brown. Let them cool, and peel off the skin.

Wash the rice thoroughly, then place it in a bowl with the 3 cups of water & the juice from the gandules. Let it sit while you do other things. In a big pot (at least 4 qt.), brown the salt pork. The aroma will fill the air and cause your children and pets to congregate in the kitchen. Reduce the heat to low and add the spices (achiote, oregano, garlic, salt, cilantro) and the peppers. Sauté these for a few minutes (if you didn’t roast the peppers) and stir it all together. If you did roast the peppers, you should add the olives, capers, tomato sauce and gandules at the same time. If not, then add those things after you’ve sautéed the peppers.

HEALTH CORNER

We are sad to make the announcement that from now on the Health Corner by Julene Tripp Weaver will not be run as a regular feature of BABES Talking.

Julene has been kind enough to share her vast knowledge and supply us with a very informative article each month on health issues relating to HIV/Aids. In the future we may occasionally run articles from Julene as she posts them on her personal website. We all would love to thank her so very much and wish her the best of luck with her new pursuits. Following is an announcement from Julene:

Drain the water from the rice into the pot, and bring it to a boil - then add the rice. Cook over medium heat for twenty minutes uncovered. Serve!

Internet Training

Does it seem like everyone else is “surfing the Web?” Do you occasionally get asked to e-mail information rather then send it by mail, or look up something on the Internet? Don’t be left out of the loop… you can do all of these things! Come to the BABES office and spend an hour or so on the computer with Loren, and she can show you all the basics of looking up information and sending e-mail. Be a pro in no time! Loren’s hours are Tuesdays, Thursdays, and Fridays from 10 a.m. to 6 p.m. Just give a call to 206-720-5566, ext. 12 and set up a time to come in.

Thank You to the PRIDE Foundation

BABES’ staff and members would like to thank the Pride Foundation for it’s continued support. We were awarded another grant raised by the Pride Foundation that helps pay for our retreats and some of the cost of our newsletter. We want the folks at Pride for their kindness and generosity (and helping us to relax at our retreats and to keep in touch with each other through our newsletter!)

In the News...
RAPE VICTIMS: Bill Would Require HIV Test for Assailant

Noting that rape victims have “enough trauma without also having to worry about AIDS,” Rep. Dave Weldon (R-FL) last week introduced the Victims of Rape Health Protection Act, which would allow rape victims to request that the perpetrator take an HIV test. Under the legislation, the alleged rapist would be forced to undergo HIV testing within 48 hours of the rape, or as soon as the offender is presented with an indictment. “As a physician, husband, and father, I am deeply troubled that this in not already law in every state,” Weldon said, adding, “For too long the rights of victims of sexual crimes have been sacrificed for the rights of criminals.” Weldon notes that post-exposure prophylaxis within 48 hours of exposure to HIV can “save the life of the victim.” Too often, he said, rape victims wait “hours, weeks, or months waiting for the crime to be fully adjudicated before they can find out if they have been exposed to HIV.” Weldon's bill would make the results available to the defendant, the prosecuting attorney, the judge and the jury (Weldon release, 10/15).

Legislative Victory for Workers with Disabilities

The U.S. House of Representatives has taken an encouraging step towards improving the lives of people living with disabilities, including HIV/AIDS, by passing its version of the Work Incentives Improvement Act of 1999. Currently, many people living with disabilities who choose to return to work earn too much to qualify for Federal disability benefits. In addition to losing cash benefits, they often lose their health insurance coverage through Medicare and Medicaid. The new legislation would expand income eligibility for Medicaid and allow workers to but Medicaid coverage even if their income exceeds the new standards, with a cap at an annual salary of $35,000. In June, the Senate passed its version of the bill, which does not include a salary cap for the Medicaid buy-in program. The House and Senate bills will also benefit people who are HIV-positive but have not progressed to an AIDS diagnosis. Under current law, a person with HIV must have an AIDS diagnosis in order to be counted as disabled. The proposed law would enable states to implement demonstration projects to provide Medicaid coverage to workers who are “reasonably expected” to become disabled if they do not receive medical care.This will enable HIV-positive workers to receive the care they need to stay healthy and productive.