Stephen C. McKinney Memorial Thread (1969-2001)

[Furls Fire]

I got a call from Anna, the beautiful woman who Stephen loved and lost due to his illness. And she told me she had been thinking about him alot lately. That she can't seem to get his smile out of her mind. I asked her how she was, and she told me that she and her husband were divorcing. My heart broke for her. She wanted to hear the poem he wrote for her again, because she couldn't find the copy of it I had sent her. So, I recited it, not having to find it, because I knew it by heart...

For Anna

Without you, who remembers me?
My body, the instrument I once lived through to dance,
becomes only pain as I lift higher on pillows to take in air.
The day we parted, a south wind blew flowers into my room
and the floor whitened with petals.
I’m unsure we have the right to desire union with anyone.
Remember, Anna? That night, where we two flowed into one?
Passion, elation, ecstasy
and we wondered,
how could such joy be against God?
Ah, the small kisses all over, from neck to cheek,
becoming the great kiss, unresisting flesh on flesh,
pulled tight for just that time.
Glorious perfection, ceaseless love.

We cried together then. When I hung up the phone, I went and found the journal entry he had written shortly after he left her.

[Stephen C]

September 17, 1990 11:08 AM

Ah Anna! How I ache for you!

Regret threatens to drag me under. I cry out your name in my dreams of loss. You are the first casualty of my illness, the first great grief. And my soul howls out the anguish as its mate is ripped away. I treasure the precious gift of you, long for the sweet song of your voice. There is no forgiveness in the wake of this act. I do not seek it. Were I a true man, I would beg at your feet to allow me in with you again. Yet, no degree of desire can make me thrust such pain on you. You, who sought only to soothe the devastation that befalls me. You, who only wanted to hold on and defy the truth of it. You, whose tears drenched the front of my shirt as the final farewell escaped my thick throat.

You.

All of you given and spent on me. Were I a real man, I would not have stolen the choice from you. I would answer the damn phone when it rings and not cower against the memory of your breath on my neck. Anna Maria, I see the beauty of your face behind the closed lids of my eyes. And the long loss, the pained path stretches out its endless winding forward. Forward beyond all the love left before the great break, the great rending of the souls that were us. Are us. Yet, the love lingers, and plays out the anguish, the blood bleeding out of it. The way back gone.

“I love you!” Came the cry as I drove away from you.

“I have loved and have been loved to the breaking point.” I shouted out to the night sky as I sped from you. And I will never not love you. The great grief of it I’ll carry through the days of illness to come, and I will only hope that you will not keep loving me.

Anna, please. Stop loving me.

[Alex]

He just kicks you in the teeth.

[StevieG]

He just kicks you in the teeth.

That he does. And he does it poetically!

[Furls Fire]

Anna is a very special person. She is like another sister to me. I've kept in touch with her all these years and I am so sad that her marriage is breaking up. She told me that she never felt for her husband what she felt for Stephen. Stephen will always be her soulmate. Like he said, she was the first casualty of his illness. And he always regretted leaving her to spare her.

[Fist and Faith]

Damn...

And, you know, I can't help thinking of Life Goes On while reading this.

[Furls Fire]

Indeed. I looked for Life Goes On on DVD and they only have the first season available, which of course, Jesse was not in.

I've invited Anna and her two girls to come spend some time with us this summer. I hope she accepts. Altho, I don't think I will show her that journal entry. The last thing she needs to "hear" right now is Stephen begging her to stop loving him.

*sigh* Some wounds never truly heal.

[Alex]

I've never heard of "Life Goes On", what was it about?

[Menolly]

I'm horrible at summarizing, but tv.com has a list of the episodes by season...
Life Goes On

[Furls Fire]

They need to get the remaining 3 seasons on DVD. Such a good show. Introducing Jesse's character at a time when there was still so much fear and misunderstanding about AIDS was a brilliant move. And kudos to Chad Lowe for playing him so amazingly.

[dlbpharmd]

He just kicks you in the teeth.

....and rips your heart out. Wow.

Furlsy, were I Anna, I'd want to read that entry.

[Menolly]

dlb speaks wisely, Furls.
Although I'm unsure if while in the midst of going through a divorce is the time for it.
Perhaps after, when hopefully any bitterness for the current situation has passed...

[dlbpharmd]

Oh, and welcome to the Watch, Alex! I'm late to catching up on this thread by a few weeks. Hope you enjoy your time here! You're among friends.

[Alex]

Thanks! I'm so happy Stephen led me to Tracie and her wonderful family.

[Fire Daughter]

I hope Anna can come, I haven't seen her in like, oh...5 years or so. And her little girls are so precious! Twins! They were 2 the last time I saw them.

And Alex...we love you!!

[Alex]

*blows kisses to sweet Brooke*

[Furls Fire]

Hmmm...maybe someday. I just don't think that now is the right time. Of course, I've had many chances to show Anna that entry (and a few others about her) in the last 8 years, but I never have. She seemed happy with her life and I didn't think she needed to be reminded of such a painful time.

I don't know. Sometimes I just don't know what the right thing to do is.

And it seems that I have undercut my legs out from underneath me when I attempted to go over some functionary's head in South Africa, I've thrown several adoptions into jeopardy by doing that. Now I know what Stephen meant when I heard him shout in my ear that I was going the wrong way. I'm really angry with myself, I hope I have not endangered these children by my impatience.

[Fire Daughter]

Hey everyone, please keep Alex in your prayers. Mom got a call last night that he collapsed at work, so she left for Salem. She's there now, prelims show he has a KS intenstinal infection and flaring PCP. She's going to get him transfered to the hospital down in Bend, so Dr Liz can take care of him and it's closer to us.

Please keep him in your thoughts and prayers!

--Brooke

[Menolly]

Fire Daughter, if I may...

Some of us are totally ignorant regarding many of the conditions associated with HIV and AIDS. Well...I know I am, anyway. Furls explained PCP just this past week to me via messenger; what is a KS infection?

Refuah shelema, Alex!
You were already in my prayers, but perhaps I can make them a little more fervent.

[Fire Daughter]

Just heard from Mom, she's very upset, apparently they are refusing to ambulance transfer because of Medicaide restrictions. Of course Mom is telling them that she will pay for the transport privately, but they aren't budging. She's not very happy at the moment.

Here is a basic fact sheet on KS, Menolly:

Kaposi's sarcoma, or KS, is a type of cancer that men with AIDS may develop. It is rarely seen in women. Although KS mainly affects the skin, the mouth, and the lymph nodes, it can also involve the bowels and lungs. If it becomes severe, it may lead to swelling or breakdown of the skin. KS growths, called lesions or tumors, can show up in a wide range of colors, from pink to red-violet to brown to blue. Recent studies have shown that KS may be caused by a kind of sexually transmitted herpesvirus that has been called KSHV, or HHV 8.

Because KS can appear anywhere on the body, and may look like other skin lesions, a biopsy of the skin is generally required to confirm a diagnosis. A biopsy is when a small piece of tissue is removed for examination and is usually painless. When KS is suspected to involve the lungs, a test called a bronchoscopy is usually performed. KS involving the gastrointestinal tract is best diagnosed by a test called an endoscopy.

Skin lesions are generally flat, painless and do not itch or drain. They can look similar to a bruise, but do not blanche, or turn white, when pressure is applied to them like a bruise does. As the lesions progress, they may become elevated, patch-like, and flow together.

Early on, these growths may be very small and innocent looking, causing no problems except for concern about their appearance. The pace of the disease varies from person to person. In some, tumor growth is slow with little change from month to month. In others, growth is rapid with new spots occurring almost every week.

It's important to bring new spots to the attention of your health care provider. If you have a small number of skin lesions, they do not have to be treated. However, if you prefer having something done about them, they can be treated by having them injected with anti-cancer medicine called vincristine. They can also be treated with x-rays or liquid nitrogen.

If the KS has spread throughout your system, chemotherapy is necessary. Chemotherapies used to treat KS include combinations of anti-cancer drugs called vinblastine, bleomycin, vincristine, etoposide, and doxorubicin. If your T4 cell count is over 200, you may be treated with alfa interferon. Some people can tolerate alfa interferon, but others have a bad reaction with flu-like symptoms including chills, headaches, and fatigue.

Newer treatments called liposome drugs are approved for the treatment of KS. Liposome drugs are standard chemotherapy drugs used to treat KS that are put inside microscopic bubbles of fat called liposomes. When the drugs are used this way, it is hoped they will have fewer side effects and be more effective. One liposomal drug is called Doxil, and the other is called DaunoXome.

DaunoXome has been approved as a first-line treatment for advanced KS. In a recent study comparing DaunoXome to standard combination chemotherapy, people taking DaunoXome responded better. Doxil is now approved for the treatment of advanced KS in people that have not responded to standard combination chemotherapy. It is also recommended if people can't take standard chemotherapy because of side effects.

Chemotherapy drugs can have many side effects. They can damage your heart, and also affect your bone marrow. Your bone marrow makes white blood cells. When you lose white blood cells, you are more likely to get bacterial infections. There are treatments to help make more white blood cells. If you're getting chemotherapy, your doctor will watch for symptoms that need treatment.

The most recently approved treatment is Taxol. Other experimental drugs are in studies for the treatment of KS, including the anti-herpes drug foscarnet and some creams for lesions that are just on the skin. If you are interested in finding out more about experimental treatments, call The Network.

KS can be treated with radiation, chemotherapy and certain immunomodulators. These treatments often have severe toxic side effects such as suppression of bone marrow activity and white blood cell production. Additional side effects, such as hair loss and nausea, may impact quality of life during treatment. New liposomal therapies seem to have less of these side effects.

They talk about chemo and other treatments, but Alex's CD4 is less than 60 now, so he can't have any of the standard cancer treatments. It would kill him. Which is also making Mom angry, because the DR there wants to start a radiation round later on today. Fortunately, Alex is alert and can refuse it. Dr. Liz has already said that the new Lipos treatments would be better. These treatments were also done on Isaiah, and they worked fairly well, but Isaiah had MAC and CTM as well at the time. So, the Lipos would probably work really good on Alex, since he is showing no signs of either of those infections. We just need to get him here!! So frustrating!!