Over the years this board has been a lot of things to a lot of people, and I've always been grateful to have been involved in this community. Tonight I needed to vent a little bit and feel the comfort of friends. There are other boards that I'm active on that could do that, but unfortunately my partner is a member there and would see the message I typed. I'm not trying to hide it from him for some awful reason, just because right now I have to be strong for him and can't show the weakness I am feeling where he can see it and have it affect him.
A few weeks ago I mentioned that my partner has Leukemia and was beginning treatment. That is the source of what I'm feeling right now and while I know I could talk to Steve (Sir God) and a few others over the phone, I've been on the phone all day and actually need to type it all out for now (no offense guys!). So, why don't I start at the beginning?
Robert and I have been together as a couple for three years now, and I have never had a happier life. The fact that we both work in politics, enjoy computer games, and get along well has only added a depth and wonderfulness to our relationship that I have never experienced before. I've done a lot of things in my life, and a lot of guys, but with Robert's it's been about more than being gay, it's been about being together and having a richer, more full together than I ever dreamed of having.
Now, Robert's always been a little on the sickly side of things. He has had very bad allergies since he was a kid, and there are weeks where he can barely function when they get real bad. It's not unusual for him, on the weekends, to get up for a few hours and then go take a nap. When he comes home from work, he likes to take a 30 minute nap before dinner or other evening activities. This has been a part of our life and something we worked around.
Beginning about six months ago things started to change. We had those real bad fires out here where the smoke blanketed Sacramento for weeks on end. His allergies were off the scale. Naps became very necessary for him to have the energy to get work done. Worse, he started having joint aches every now and then.
Still, the fires ended and he got better a bit. He was still taking more frequent naps, and with bad allergies, feeling weak a lot more. He also began losing weight, but kept on mentioning how much less he was eating.
Then in August he went to Denver. I left for that City a few days after him, and he looked like hell. Now for those that have never experienced a National Convention (of either party) there is a lot that goes into making these things work. California has the largest delegation for the Democrats, and that means even more work for the staff (which Robert is one of). He was getting up early in the mornings (4 a.m.) to get credentials for that day's events, then working through until six or seven at night. Two nights, he just went back up into his room and slept, missing Michelle Obama's speech, Ted Kennedy's speech, and of course Hillary's speech, all of which he HAD wanted to see but did not have the energy to actually go and see. On Wednesday night, we both rested and so we were able to Barack's speech on Thursday night (we were on the field, on the 30 yard line while Obama was on the 50).
Finding transportation out of that event was a horrendous nightmare. Twice I nearly called 911 because Robert looked like he was about to collapse. Fortunatley I found us a bus out of there and got him back to the hotel room.
When we got back to Denver, I started pushing him to go see his doctor. After his last appointment a couple of months back, the doctor had given him a lab slip to do blood work, and the lab was still valid, so he agreed to get the blood drawn and made an appointment for his doctor (which was two weeks away). It only took a few strong words and a simple demand to get him to this much and I relaxed after he got his blood test that Thursday night.
The next morning while he was taking a shower to go to work, his phone rang. He checked the voicemail after his shower and it was the Nurse Practitioner from his Doctor's office. Robert called her back and got her assistant, Anjelica.
Anjelica: "Mr. Jordan, she's in with a patient but I can have her call you back...wait a moment please. Yes, it's Mr. Jordan. Okay, Robert, Deborah will be right with you."
Now, when you hear that from your Doctor's office, it's time to freak out, and Robert smartly called my name so I went to hold his hand while the NP talked to him.
NP: "Mr. Jordan, we just got your lab results and I need to see you as soon as possible. Can you come down today?"
Robert: "Um, what appointments do you have available? Last time I called they were all booked up."
NP: "You don't need to worry about an appointment. Just tell them your name and we'll fit you in immediately."
Robert: "We'll be there in ten minutes."
NP: "Good, we'll be ready."
In her office we get the bad news. He's either got HIV which is turning into full blown AIDS, or he has Leukemia. Now we're gay men, we know HIV quite well, even though we've been tested negative multiple times over the last few years. Then there's the fact that I know I at least have never, ever been tempted to cheat on Robert, much less actually cheated on him. I'm also 99.9% certain he would never cheat on me, and we both told her that. Still, we agreed to an HIV test just to make sure (I did have a massive transfusion last year so that's the only real probablility and needed to be eliminated.
We talked some more, and she said she was going to send the lab results to a hematologist for review. Bottom line is that his white blood cell counts were over 380k, and when they get close to 500k, you risk stroke. His red blood cells barely existed, and his platelets were minimal. Then she told me we could go home, but if I saw certain times, I was to take him to an ER.
Four hours later, and many phone calls later, we were at Mercy General Hospital with him being admitted directly into the Oncology unit. HIV test was negative, so they were sure it was Leukemia. A bone marrow sample was removed, and they started him on the first of six bags of blood he received over the next few days. By the end of the next week when he was discharged, the preiliminary diagnosis was CLL, one of the more treatable forms of Leukemia with a 90% survival rate.
The next week we went to the Doctor and got the inkling that things wouldn't be as all neat as we thought. The bone marrow results were back and while they showed classic CLL (so that diagnosis was valid) they ALSO show contradicting indications of Mantle Cell Lympona, a more deadly version of Leukemia. Also in this time Robert's spleen has been swelling up and is about 3 times normal size. The good news is they think if the mantle is there, it's located in the spleen and not the bone marrow. That's good, because taking out the spleen would remove the Mantle. The Doctor ordered a PET scan which was done two days later. He also referred us to a surgeon for the spleen removal but that surgeon is out of town until October 7th.
Over the weekend and through the first of this week, Robert began running consistent low grade fevers of between 99 and 101 degrees. His joint pain began to increase much more than it had been and by Monday he was so weak he could barely move. We went to the doctor today (Tuesday) for the regular visit (Chemo round 2 is supposed to be next week).
The Doctor was glad to see us because he'd just gotten the PET results back. Robert's spleen is 4-5 times its regular size and has been growing backwards, into his intestines and partially blocking them. It needs to come out as soon as possible. Worse news is that today's blood work came back showing a plateau in the imrpovement of his blood cells. That means the RCF chemo treatment (which is fairly mild) was not strong enough and the next chemo needs to be more powerful...the type that causes all the hair to fall out.
So now Robert's back in the hospital with a pick line IV installed for the delivery of powerful antiobiotics to keep his body strong against infection. The surgery is likely to be Monday or Tuesday next week, if the antibiotics work. After the surgery, he will begin R-CHOP chemo as soon as he's strong enough. The Doctor hopes that will be enough to get rid of any remaining Mantle cells in his body before they can find a new home.
If that doesn't work, and this was a conversation between the Doctor and I, it is time to start making funeral arrangements and making sure his last wishes are taken care of quickly. The end could come anywhere between a few months up to three years on the outside.
On the other hand, if this DOES work, the doctor was sure to tell me that Robert can live for several more decades without too much difficulty and a little luck that the Leukemia doesn't come back.
Thanks, I really needed to vent and get this all out there, without Robert seeing it and getting depressed. We are in a fight here for his life, and I'm going to do everything I can to give him strength and support to get through this with the best possible outcome, but I also realize I need to take care of myself, and when it's necessary vent a little bit like this.
We meet all kinds of people in this world, with their good sides and their bad sides. Robert is one of the few people I've ever met who genuinely cares. He cares about other people, about helping to make the lives of others better, and he can fight for what he believes in with more energy and passion than a hundred other people. It's part of why he has the job he does, Deputy Director for the California Dem Party. It's also why I fell in love with him and want no one in my life romantically except him.
Sounds kind of strange, me saying that last line.
I thank everyone for their prayers, and their support in advance. It is appreciated tremendously.
Now a message from TheJudge isn't complete until there's something humorous in it. When the Hematologist was trying to find another surgeon to do this surgery, he called a colleague who asked if there's been a second opinion. Our doctor said "We're still waiting for the insurance to approve the official referral, but I have an informal one from Dr. XX."
The other doctor at this point (and I heard it through the phone) - "How did you get that bastard to even look at the file?" The doctor they are referring to is one of the best and only deals with high end/high paying patients.
Our doctor answered: "Well, you remember Art Torres, right, the Chair of the CA Dem Party? Yeah, he's a great guy. Well he was a paitent of Dr. XX last year and asked him to take a look at this because Robert is one of Art's chief Deputy's."
Other Doctor: "sh*t, well, um, I'll fit him in tomorrow on my rounds. Do you think I'll need to do the surgery this weekend? My kid's got a game but I'll skip if it's needed."
Our Doctor: "I was hoping for Monday or Tuesday, actually, so that the antibiotics have time to work."
You know, it's nice being someone, or having your partner be someone once in a while. We've already gotten word that if the insurance company tries to deny any procedure our doctor wants, that insurance company will be getting calls from state officials in various Senate and Assembly committees that deal with Insurance and Health Care. I'd hate to be a normal person who actually has to worry about a denial from the insurance company lasting for more than a few days.
Topic: We Need Your Prayers (Read 4402 times)