The Final Diagnosis

Just a medical exam room. Not the one I was in, ours was much smaller.

I was finished with all the testing. I needed to go in to see my oncologist to be staged in my disease and discuss treatment options.

Dr. Sapra was a very nice man, and from what I read later, he thought I was a nice lady, too. His office was in a building that was next to the hospital, four stories tall, and looked like it was made of windows. He was on the fourth floor, and waiting for the elevator sometimes felt like forever.

My parents went with me to this appointment. Mom, with a two page list of questions, and dad with a tape recorder. We sat in the waiting room for a long time. I had come straight from work, and mom and dad had come together from home. Dad had finally had enough (he wasn't much on patience) and after we had been there for about 45 minutes, he went out for a smoke. Of course, that's when they decided to call us in. Luckily, dad came back just in time.

We all shuffled into the tiny exam room and tried to find comfortable spots to sit. Dad ended up standing by the door, Dr. Sapra took the chair by the sink, I sat up on the exam table and mom had a chair by the window. Dr. Sapra took out my charts and looked through them, writing here and there. Finally, he talked to us.

According to all those tests, the cancer had not spread to my bones or blood (good!), but I did have a mass in my chest, as well as the tumor in my neck. Because of the location and symptoms I had had, I was a stage IIA/B. Both my tumor and the mass in my chest were on the left side. For some reason that made a difference. (Stage II A/B)

Sr. Sapra had not had a lot of instances of my particular disease come through his office at that point in time, and told us that he had consulted the oncology council for advice on how to treat it. He said that I could one of three things: Have chemo only, and hope that the disease would go away through that; do radiation only; or have both. At this point, he said chemo would probably do the job, but there would be tests as time goes on, to see what was going on in my body. He said it looked like the best formula for me would be a concoction called ABVD. Adriamycin/Bleomycin/Vinblastine/Dacarbazine. (ABVD) He thought that would most likely do the job for me.

I was to have chemo once every two weeks, and it would last for several hours. There were several side effects, like hair loss, weight loss/gain, vomiting, nausea, dizziness, shortness of breath, headaches, dry mouth, yeast infections in my mouth, chills, low blood counts, dry/painful skin, mouth sores, the list just goes on and on. I didn't have all of this stuff happen to me, but I had other things... We'll get to that more later. I was to report to his office for my chemo, and I would be sitting in the little room next to this exam office with a bunch of people. From what I saw, it looked like I would be fighting for seating. Great fun. Dad even asked if I was allowed to drink. Nope.

The doctor wanted to start me on chemo the following week. We made an appointment for the following Tuesday. I wasn't going to take the day off from work, but my boss told me it was for the best. She was sure that I wouldn't want to come to work afterward. Mom and I discussed my hair and we made an appointment to have my hair cut after the chemo. I was going to cut it short, and since my hair was really long, I had decided I wanted to either donate what was left or use it for a wig for myself. Dr. Sapra had said it was ok for me to continue working at this point and I let my boss know that I was ok to do so.

So that was that. Now, I just had to make it through chemotherapy.

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Bone Marrow Biopsy

Bone Marrow Biopsy Prep

As I have said, my editor is MIA, so please forgive the not so smooth flow of my future blogs.

After all those tests, I was informed that I needed to have a bone marrow biopsy. I had no idea what that entailed, and from the faces of people when I told them, I didn't think I wanted to know.

I set up the appointment, and I asked if I would need a ride home or anything like that. I was told not to worry about that. I had to do nothing to prepare. A person at work decided to try and tell me something about a giant needle. She loved to make me cringe and frightened.

I drove myself to my appointment. When I arrived, the girl behind the counter asked me if I had a ride home. I explained that I was told I didn't need one. She had me call my mom to arrange a ride home. Mom was not available, so I had to leave a message. I was not allowed to go into the office until I had a reply that she would come when she got off work. The nurse finally called back and they brought me back to the office.

There, I was weighed in and had my height checked. The nurse led me back to an exam room. Thee, I was instructed to take off my clothes and put on hospital jammies. They are a little different than a gown. They are made of cotton, instead of paper. The top goes down to about my knees and ties at the neck, leaving the back open. The bottoms are like pajama bottoms with a drawstring waist, just a little thinner. After I put those on, The nurse came back to check on me, and led me down the hallway to another, larger looking exam room.

The room was a yellowish brown, with lights, trays, and a large chair that looked like a dentist chair. The nurse had me lay down in the reclining dentist chair. She prepped my arm for an IV. She told me that she was going to give me Demoral, to help me relax and so I would not feel anything when they did the biopsy. The doctor came in and explained the procedure.

They would, indeed, take a giant needle and insert it into my hip, all the way through my pelvic bone, into the marrow. They would suck up bone marrow until they had enough to run the tests, and retract the needle. Then, I should go home and rest.

To prep me, they had me lay on my left side, so they could insert on the right side. Someone lifted back the hospital gown and I was told to pull down the pants to my knee. I did as I was told, and I felt something cold and wet on my low back. I was being sponged off. Then another sponge and more wetness, this time the wetness dripped down my hip and underneath me. I was suddenly terrified. The smell of iodine reached my nose. It was sterile, slightly sour, and unfriendly smelling.

Suddenly, there was pain. At first it just stung, then it ached. I was shaking and I started to cry. The pain slowly subsided, but I could feel this pressure. Just pushing and pushing me into the chair. The needle was thick and I couldn't feel it so much as be afraid of it. And being afraid made me cry even more. The nurse came around to the side of the chair that I was facing, and help my hand. She wiped my hair back from my face and told me I as doing ok. Once I started feeling the scraping of the needle against my hip bone, I started to sob softly.

The doctor scraped and scraped and I assume, finally got into my bone. I could hear the marrow being sucked into the syringe. A horrid bubbly, sucking sound. It stopped, and I could fell the pressure again, as the doctor removed the needle. After the needle was removed, I was cleaned up again, and I got a bandage where the insertion point was. The nurse had me roll over, and sit up. She explained that the “hole” would heal withing a couple of days, but to be careful when showering, because it wasn't a small hole.

By that time, I began to get kind of woozy. My mom wasn't there to pick me up yet, so I was asked to wait in the waiting room for her to pick me up. I started to try and read a magazine, but the words just blurred in front of me. So, I tried to concentrate on the TV. That was not working either. By the time my mom came in to get me, I was sliding off the chair and onto the floor. My poor mom had to get me into the elevator and get me down to the car.

She took me home and told me not to worry about anything, her and dad would take me back to my car the next day. She told me to go in and rest. I didn't need to be told twice. I went in and immediately fell asleep.

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I Love This

I realize it has been a while since I have updated, and I have been working on it, but my "editor" has been slacking. :-) I was reading the The Best of Craigslist and I found this entry. It is one of the most fabulous things I have ever read. I wish I could email this person and tell her that I love her. It had me in tears.... because I KNOW. I know how she feels. I want to give her a hug. And I want everyone to know that everything she says is totally true and this is how it is.

She posted this from my local area, Portland, OR. I would love to meet her.

Originally Posted: Wed, 31 Oct 09:31 PDT

Cancer Rant

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Date: 2007-10-31, 9:31AM PDT


In February of this year I was diagnosed with advanced Hodgkins Lymphoma. I went through eight months of chemotherapy, everything looks really good, and now I am just waiting my post-chemo scans to indicate remission. I am finally done with chemo. Woop woop. This is very good news for me. I’m real happy about it and I am excited to get on with my life.

I was a good cancer patient…no, a great cancer patient. I was tough. I didn’t curl up in a ball and hide, I faced it, I sucked it up, and got through it. I’m not looking for a medal, I just want to preface what I am going to say with the fact that I am not whiney or self-pitying, and that I realize that I am not the only one who’s had to deal with this crap, and that there’s worse things that could have happened to me. I have a wonderful family and caring friends that have formed a very lovely support system for me. I cannot thank them enough for all their help and love.

That said, here’s my rant…This goes out to everyone I know – friends, family, co-workers, doctors, nurses, radiologists, technicians, friends of friends, exes, and others…

1. There is no “good” kind of cancer. Yes, this kind of cancer at my stage has an 80-85% survival rate. That’s great, I am happy about that – really, I am, but that doesn’t make it “good” or any “better” than any other kind of cancer. Cancer is a scary thing, the treatment is excruciating, and at the end of the day, if you happen to get “lucky” and be one of the 15-20% that don’t survive, that statistic turns from a “good” one to a not-so-great one. Really. That’s like one out of five. Can you think of five friends? Picture them. If one of them up and died would you consider it a “good” number of them? I didn’t think so. So please, don’t tell me I got the “good” kind of cancer – don’t even suggest it. Don’t even say, “Well, at least you didn’t get _________ cancer, that would really suck.” Uh, hello, this pretty much REALLY sucks. Next time you get cancer I’ll ask you if you think the kind you got is “good”.

2. Don’t tell me things I don’t want to hear. For some reason, it occurred several times that when I told someone what I was going through (which is kinda awkward anyway), they would say something to the effect of “OH, my (mother, sister, aunt, grandmother, insert any other relative or even remote acquaintance here) just died last year of cancer.” Or “Right, my (insert distant relative here) died of Hodgkin’s.” What the hell?? I have been diagnosed with a terrible disease and am undergoing intensive and debilitating treatment, and you’re going to tell me about someone dying? What? Seriously? It’s better just to not chime in here. Again, next time you get cancer, I’ll try this line out on you and you can let me know what you think.

3. DO NOT ask me about my hair. With the kind of chemo I had, my hair started falling out around treatment #3, slowly at first, then lots at a time until I finally, and very sadly, shaved my head. THAT WAS REALLY HARD TO DO. It’s about a lot of things…it’s about vanity and feeling ugly, it’s about the stigma of being sick and that being obvious to the world, it’s about knowing or not who you are without your hair/eyelashes/eyebrows, it’s complicated. And, I take ownership of the fact that some of that is really superficial shit – but it’s very real and it’s emotional. So, comments like “How’s your hair doing?” “Wow, it’s really thinning out!” “So is your hair just coming out in handfuls?” and “Is that a wig?” are not helpful and WILL make me cry. If you think this is stupid or oversensitive, let me say it again: next time you get cancer let me know how this goes.

4. Don’t tell me it’s going to be ok. Bottom line is this – I know I want everything to be ok, and I know you want everything to be ok – you wouldn’t be my friend/involved family member if that weren’t the case. Unfortunately, we BOTH know that it just might not be ok. We BOTH know that there exists the possibility that it’s not going to be ok and that the disease isn’t going to respond, or is going to come back, and that even if I am tough and brave, it could kill me. I have had to deal with that idea since the word “cancer” came out of the doctor’s mouth. In that moment, and in the hours and days to come, I knew that it could happen that everything was not going to be ok. If I didn’t know that, cancer wouldn’t be such a big deal. If that weren’t a possibility, we wouldn’t have shed tears when we heard the news. So, for my sake, don’t say that line. I know it’s the first thing that comes to mind, and I know you mean it well, but try something else that actually means something, like: “Whenever you need anything I’ll be there” or “This is going to be rough but I’m here for you” or “I’m on my way over with a last season’s Top Model” or even just “Give ‘em hell, sista”. I know you may not get it, but next time you get cancer we’ll share profound understanding when I tell you that I know it may not be ok and that I know that’s real scary.

5. Don’t comment about my weight. Ok, here’s something that I didn’t know before I started this. Chemotherapy is NOT a weight loss plan – YES, they have indeed discontinued all the fringe benefits from the cancer card membership. Turns out, they give you steroids that make you hungry all the damned time. And, you feel like complete shit and don’t even have enough energy to walk up the stairs, much less to exercise. In the beginning when I was still trying to figure out how to deal with shitty side effects like constant vomiting, painful mouth sores, etc, I lost weight because I just literally couldn’t eat. But once I got that under control, the hunger would come on, and man, I can eat a lot. I was in pretty good shape (at the gym five days a week, healthy foods, etc) when all this started and now I have gained weight and am up a pants size. The once-muscle has turned into mushy fat and I’m not happy about it, but during treatment there was just no fix. So, the “wow, you’ve put a couple on, haven’t you?” or “I thought you lose weight on chemo” comments are not helpful and again, will make me cry. Next time you get cancer, see how you feel when I tell you to “hit the gym.”

6. Chemotherapy sucks. I think everyone knows that – I don’t know what the first thing is that pops into your head when you read that word, but I would venture to guess that it’s not something warm and smiley. It sucks, it really sucks. You vomit, are nauseated (which is so much worse than vomiting) all the time, you get terrible headaches, you can’t sleep, you get sores in your mouth and chronic yeast infections, you get seriously seriously constipated, your brain malfunctions and you can’t remember how to get to the bus stop or where you normally leave the toothpaste, your whole body hurts, your toenails fall off (wtf? Yeah) and now they give you shots to stimulate white blood cell production (at least in my case) that cause relentless, incapacitating pain that made you simply want to give up on living just to make it stop. Ok, I said it, chemotherapy sucks – and I am really good at being tough and not letting everyone know all the shitty stuff that’s happening to me at once, but you know it sucks. So, no, I am not interested in hearing you whine about a cold you think you’re getting, your scratchy throat, your eye/ear/sinus infection, your sleepiness, your headache, etc. I know you really don’t feel good, but c’mon man, suck it up – or at least go tell someone else who doesn’t have cancer. Next time you get it, you’ll drop kick the asshole that spends ten minutes talking about how bad their hangover is.

7. It’s a REALLY long road. Eight months is a long time to be sick. It just is, and I KNOW (I really know) that it gets old. In the beginning everyone called all the time, offered to go to chemo with me, sent lots of e-mails, came over to visit when I was sick….but after the months drag on it’s like people get sick of it. I understand that – ‘cause I got pretty sick of it too. I got sick of calling in to work, not doing anything fun, not seeing anyone….even just answering the damned “How are you feeling?” question….I felt like it was better to lie and say “fine” than to say how I really felt because people kind of don’t know how to react or don’t want to hear it. I have a wonderful husband and mother who took exceptional care of me, even when they needed a break, even when it got old, even when they got sick of hearing me say I felt like shit. They did that because they knew I needed them. I needed other people too, I needed girlfriends to just come over with a movie or a dvd of a funny tv show, or to call me on the days they knew I had treatment, or to just call when they hadn’t heard from me in days. Some did and some didn’t. You know who you are and why you didn’t. Maybe you didn’t feel comfortable or maybe you were too “busy.” Regardless, I love you, and I will do it for you the next time you get cancer.

I really, really hope you never get cancer. I mean that for everyone – even if you’re a jerk, even if you write to me and rant meaningless bullshit about my rant, even if you really deserve to have something nasty happen to you – I hope you don’t get cancer. It’s awful. I’m not one of those “I’m a survivor!” types, I’m not one of those in-your-face super tough post-cancer freaks, I’m really normal and I will get over this. That said, if you do get cancer or if your friend or (insert any relative here) gets cancer, you can bet your bottom dollar that if/when I hear about it I’ll be on your/their doorstep with a big teary welcome to the cancer club hug and a mop and bucket to clean the floors, or popcorn and a dvd for the kids, or dinner so you/they don’t have to make it, or whatever it takes, for as long as it takes – and you won’t have to ask for it, and you won’t have to say thanks, because we’ll both just know. It’s a special club and we take care of our own.

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