Before I continue, please give 4thepeople's diary, posted today, a read. As many of you know, she's got aggressive cancer and she needs our support.
You, my friends here at dKos, know more about my condition and how I feel about it than most of my family and friends. Why, you may be asking yourself. Well, because my fold find it’s more comfortable when I’m in the position of being the listener. I’m a large part of their support system in their times of need and also in times that aren’t so much of need, but more of want. When I’ve tried reversing the roles, the status quo gets blown completely out of proportion, the Earth’s rotation around the Sun becomes out of sync, the planets no longer align, tidal waves ensue, and the Earth becomes blanketed in darkness for eons. Getting the picture?
They look at me to be their savior, their hero, their unconditional friend that makes everything okay and holds their world in some semblance of balance. That’s me; the superhero of friends, holding a position that has limitless responsibility, no sick days, few lunch breaks, and restroom breaks, only when absolutely necessary. I’m "on call" 24/7, and, for as much as I’d like to quit at times, quitting isn’t an option as I’ve been told, in many spoken and unspoken words and ways, that no one can take my place. A tall order to fill? You bet. Anyone care to take my place? I thought not. Some of you may say, "Well, you can always set more defined boundaries or say you just can’t be there for them just then, or you could just end the relationship." And, of course, you’d be right. If I were anyone but me, I might be able to do this; I’m not anyone else however, I’m me, Dreaming.
Some of the people who do know just can’t handle it. When I talk to them now, you can hear that "thing" in their voice that the word cancer seems to summon; that sound and tone that happens when people feel like they’re talking to the walking dead. Others just won’t talk about it with any seriousness because "you’re not dying yet, Dreaming." No shit. So, I only talk about it minimally.
Now for the cancer part of the story . . . in late 2001, I went to my family doctor, who also happens to be my gynecologist, for my "yearly" exam, which use to be just a pelvic exam, breast exam and having a pap smear taken, but over recent years, has become so much more. It’s now called a "Women’s Wellness Exam", (I hate these things) and involves more, including labs, which means having bloodwork done. When the labs came back, among other problems, which I viewed to be minor by comparison, they showed that my white cells were elevated significantly. I met with my doctor and she chalked it up to I may have been fighting off a cold or some other minor infection. "Cool," I thought.
Okay, stay with me now . . . in 2002, my son enlisted in the military, and my heart sank. In May of that year, he entered basic training.
By October, 2002, I got through my son’s basic training through clenched teeth and, from there he was sent to his base. My teeth were still clenched because, as we well know, the war in Iraq had begun.
By December, a year had passed and it was time, once again, for my "Wellness" exam. My lab results showed that my white cells were noticeably higher than the years before and my doctor wanted to do some more extensive testing. I quietly asked her if they could wait because I had a bad feeling about where this was going and my son’s unit had been put on "standby" and were awaiting their "warning" order. Mentally and emotionally, I just couldn’t spread myself that thin.
In mid-March, 2003, my son’s unit got their "warning" order and by the end of March, he was deployed. I gritted my teeth and sobbed quietly into my hands as I watch Mosaic News on Worldlink each evening, hoping against hope to catch a glimpse of him and, at the same time, hoping against hope, that I wouldn’t.
I watched when his base got hit with mortars, black smoke rising, wondering if he was dead, injured, or alive. I gritted my teeth through the phone call we received each month from his superiors, still stateside as his base, telling me how peachy things were going for his unit over there.
With my nerves frayed and my spirit exhausted, I showed up to hear the results of my end-of-the-year 2003 Wellness Exam. Long story short, my white cells were still significantly higher. High enough to warrant concern. My doctor scheduled some follow-up labs to rule out some diseases and disorders that could cause my white cells to elevate. They all came back negative. "Dreaming," she said, "I’d like you to see a specialist." My reply? "I’m sorry, but no. Until I see my son alive again, none this means much to me." She wasn’t pleased, but reluctantly agreed.
In late March of 2004, my son’s unit returned to the states and, once again, I allowed myself to breathe. I’d gotten him home injured, but alive, with a year left to his military contract.
In late 2004, I again had my Wellness Exam done and my white cells were higher than they’d ever been. Finally my doctor convinced me to see a specialist. I called to schedule an appointment and the specialist she’d referred me to couldn’t see me until January of 2005. Fine by me. Apologies to any and all of the wonderful doctors here on dKos, but this guy turned out to be the current "new kid in town." A young, slick, condescending, little fast-talker who ran tests that’d already been run, dragged his feet regarding glaringly obvious tests that should’ve been run, and pretty much proceeded to piss me off. After three visits with him, over the course of three months, of him pretty much telling me I was wasting his time, all the while taking my money and my insurance company’s money, I’d had enough.
By now, it was March of 2005 and I met with my family doctor/gyne who agreed with my summation of "Dr. Slick." He’d been just as cavalier with her regarding forwarding test results to her and gave her the "you're overreacting" speech when she tried to consult with him by phone regarding my white cell problem. I was relieved to be done with him. She recommended another specialist. I called and made an appointment with him that day. He couldn’t see me until August.
In April of 2005, my son's military contract ended and he came home, injured and slightly, but noticeably damaged, but alive. He's got some PTSD going on which he's dealing with; he injured his back while deployed to the tune of 30% disability, which he was granted, reluctantly, but deservedly by the army with help of the VA; and he's had to have surgery on his foot due to an injury he incurred during Air Assault Training. (What a delightful term, huh?) He learned much during his service with the military. He's a lurker here at dKos, a devout liberal Dem, and a peace activist, which he works in when he's able, being he's a full-time college student, soon to be entering his junior year. He's now doing well physically, mentally, emotionally, and academically, with a 3.9 GPA. Am I proud? Can't you tell??
In August of 2005, I saw my new hematologist/oncologist at the cancer center in the major city relatively close to our house. If you read the diary in the link at the end of this diary, you know that I don’t travel well. It takes me at least an hour and a half to get to the cancer center, taking 2 trains and a bus. It’s much easier for me to travel this way than on the highway in a car.
From August 2005 through August of 2006, I saw him four times. The first three visits involved lots of blood being drawn and discussing the results, as the lab is right there at the cancer center. It’s drawn right after check-in and the lab sits right off of the reception area. My doctor’s lab orders are waiting for me when I arrive. After that I go to the reception area outside of his office and wait to be called in. After I’m called in, I’m weighed (always a treat) and the nurse goes over the checklist of meds I take that may have changed in the time that’s passed since I last saw the doctor. I also inform her of any physical symptoms that may have developed or changed since my last visit.
My doctor comes in after he’s read the labs results from the blood that was drawn approximately 30 to 60 minutes before and gives me his input on what’s going on with my white cells. (Fancy that, these tests actually can be done and results be given in short time.)
By my third visit in August of 2006, my doctor was perplexed by his findings. He was sure that I either had lymphoma or leukemia, but he wasn’t getting the conclusive results he was looking for. In the batch of bloodwork that was drawn during my previous visit, a test was run called a TCR Gene Realignment. Try Googling that. You’re going to get sent to a whole slew of sites that will bombard you with more med speak than you’re prepared for if you’re a lay person like me. A friend, a pharmacologist, who's been involved in leukemia research, tells me that it basically involves tearing the blood apart, looking for the abnormality that shows what’s causing the white cells to elevate or at least that’s the way I understood his definition.
My doctor informed me that the TCR Gene Realignment had revealed the abnormality and that he was fairly certain that it was lymphoma, but that he couldn’t be 100% sure without running a bone marrow biopsy because if it was lymphoma, the abnormality had to show itself in my bone marrow as well as my blood. He said that he couldn’t and wouldn’t give me a less than accurate and true diagnosis. I was fine with that.
"Great," I said, "When are we going to do it?" "Now," he said. "I’m going to have the team come in to extract your bone marrow." Now? Shit.
I was told to de-robe down to my underpants and to put on the hospital gown, conveniently placed on the examination table.
Within minutes, in walked a lovely young intern, training under my doctor, an RN in her mid-30s, and Edward, the young lab tech who would be reading my slides. The mood in the room was heavy and thick with intense seriousness. The lovely young intern asked me to lay down face down on the table and I was asked not to move. She talked me through each step that was taken, which you can read in detail here.
She gently applied some Lydocaine and told me that I’d feel some pressure which should present itself just behind my left thigh and knee, but that I shouldn’t experience any pain. Hmmm. I glanced up at the nurse who looked like she were witnessing my being given a death sentence and I felt bad for her. I told her that it would be okay and she smiled.
The young intern asked me what I was feeling and I told her that I wasn’t feeling so much pressure as more of a gentle stabbing pain on the bottom of my left foot. She told me that I shouldn’t be feeling that sort of sensation. What can I tell you? That’s what I felt. "This ain’t good," I thought. Again I glanced up at the nurse who looked even more concerned. I smiled up at her and she mustered a feeble smile that looked piteous.
I don’t know what the intern did differently, but the stabbing sensation in my left foot disappeared and she told me that she was now going to apply pressure to the aspiration needle to break through the bone. "You know," I thought to myself, "the next time I’m in the mood for a trip into the unknown, I might just try skydiving." "Okay," I said.
See, what most folks don’t know is that you don’t just break through the bone and miraculously, there lies the bone marrow. The truth is, it’s not that simple. She said she was first going to apply pain medication to the hipbone itself, and then proceed with applying pressure until she got the needle into the bone. It took her at least 10 minutes just to get the needle to break through my hip bone and she told me that I had hard bones. I felt a distinct "pop", much like the release of pressure, when the bone finally gave way.
She aspirated about 7 samples of what turned out to be nothing more than blood. Edward was looking more and more forlorn with each sample. "Ed," I said, "it’s gonna be okay. We’ll get it." He too smiled a feeble smile at me.
This was getting sadder and more heavy by the minute, so in that moment, I decided to apologize for dressing in the dark that morning and putting on underwear that had the most frayed waistband. The three on my team said that it was okay. "Huh. Easy for you to say," I replied, which brought some light laughter. "Finally," I thought. The nurse said, "Dreaming, I can’t believe how pleasant you’re being." "Look," I said, "you guys don’t enjoy this any more than I do. I’m just trying to get through it the best way I can and, for me, that means with a few giggles." "That’s great," she replied with a smile.
With each sample taken, I’d cheer Ed on. "This time we’ve got it, Ed. I just know it." Finally, after the 8th or 9th aspiration, we hit payload. Finally we got bone marrow! "Ed," I said, "you’re the man." And Ed smiled a smile that would do his Mom proud.
After she withdrew the instruments, she applied a thick patch over the entry point and told me the only necessary steps that I needed to take were that I keep the wound dry and that I not take a bath for the next 24 hours. Showering was fine, she said.
As I got up from the table, the young intern asked me if I’d like to see the instruments that were used. And before I could answer, she showed me a tray of various needles and such, all covered with blood, bone marrow and bits of bone fragments. I looked away, feeling horribly faint, and told her I needed to sit down.
She told me that my doctor would be back in to tell me the results and that all the current information would be forwarded to my family doctor. I thanked her and dressed.
Another hour passed and my doctor finally came in with my results. "Dreaming," he said, "at this point in time, you don’t have lymphoma. Right now what you’ve got is a T-Cell Proliferative disorder. The abnormality in your blood is malignant, but in order for me to give you a diagnosis of lymphoma, it would have had to show itself in your bone marrow, which it hasn’t . . . yet, and it may never. It could just continue to grow slowly in your blood and you could outlive it. But it could also accelerate and, I’m fairly certain that if it does, it will show itself as lymphoma. For now we’re just going to monitor you and watch and wait. I want to see you next March for bloodwork and we’ll see if you require another bone marrow biopsy.
We left the cancer center in a driving rain. So much for keeping the wound dry.
So far my white cells haven’t increased significantly enough to warrant another bone marrow biopsy, but I know what to expect if and when that time comes.
Many have asked me why I chose the user name that I chose and I’ve given the briefest version of this story that I’m able. The truth is that I was introduced to dKos by a dear friend in the fall of 2005, while all these circumstances were occurring. I lurked for nearly 6 months before opening an account. When I did, I chose the user name, Dreaming of Better Days, which is who I am and what I’m doing.
The truth is, I’m no one’s savior and no one’s hero. I’m just your average, in many cases substandard, human who’s Dreaming of Better Days.
I can’t thank all of you enough for all the caring, love, support, and understanding that you’ve shown me when I’ve chosen to talk to you about "my problem." You all are a major part of my cancer support system. Heartfelt and sincerest thanks to all.
Update - I'm really slow, I know. I'm trying to address all your wonderful comments. I'm, most sincerely, humbled by this diary's responses. If it helps just one person, then I've done something good. Thank you all so much, not only for your love and support, but for your patience!
Update II 1:20 a.m. - I'm sorry I won't be able to reply to many of your comments until tomorrow. My son just got home from his girl's. On the way, on a busy 4-lane street, someone in the oncoming lane threw a large chunk of concrete block at his windshield, shattering it. Thankfully, he didn't wreck and wasn't hurt. All he saw was that it was a black car. He pulled into the nearest gas station, where the police happened to be. They told him that with the little information he had, that they could write a report, but that it would probably be futile. The windshield and rear-view mirror need replaced. I consider us blessed, this could've been so very much worse.
I promise I'll be back in the morning to finish replying to all of your comments. Count on it and, again, sincerest thanks.
