The day I almost died

I’ve backdated this blog a bit to more accurately reflect the timeline.

Friday 3/28 was the day for my first appointment with the oncologist (Cancer specialist) at Kaiser. I’ve been trying to find out information in easily digestable terms about B Cell Lymphoma, but getting info is still difficult. There’s a few subtypes of B Cell Lymphoma, and it’s also a subtype of Non Hodgkins Lymphoma (NHL).

My sister Vicky wanted to come with me to visit the doctor and to ask some questions of her own. My sisters have been great, they’ve been talking to people and doing some googling more about the cancer, giving me some great links and info to digest. But there’s a lot to digest, and with my current state of anxiety and mood, I’m not assimilating the information as fast as I usually do. Armed with some good questions to ask, I think I’m somewhat prepared to bombard the oncologist with a flurry of questions. Vicky has her own list of questions she wanted to ask. My parents have finally digested the seriousness of my condition after talking with Vicky. They now want to come with me to see the oncologist as well. I’m sure they won’t understand much of what the doctor has to say, but they want to be there anyway. They know they won’t really understand much as well, so they decide to bring a tape recorder with them to record the conversation. Betty also wants to really be there, so she takes some time off of work.

We arrive at the oncologist en force. The initial staff member was concerned with my large posse and had asked that some of them wait outside in the waiting room because the room was too small and can’t handle the extra people. I suggested that my parents wait outside, and that I would ask the doctor if they could come in and listen in. A few anxious minutes later, the oncologist comes in, and she says my parents can come in and listen. So six of us cozily squeezed into the small exam room, my mom takes out the mp3 recorder I bought her for Christmas last year, and asks the doctor if it’s ok to record the conversation.

The oncologist confirms it’s B cell lymphoma, but we don’t know what stage it’s in yet. I need further tests which includes a bone marrow biopsy, a PET Scan, and a MUGA scan. Treatment options will depend on what stage I’m in, but will most likely include CHOP chemo therapy, Rituxan, and radiation therapy. I also can’t surgically remove the tumor because the cancer is ‘liquid” even though there’s a mass in my chest. It just happened to settle in that area. We talk more about the chemo treatment. 6 – 8 cycles of treatment, each cycle is 21 days. That means I get a chemo injection once every 21 days. Chemo is administered via IV drip, and takes somewhere around 4-6 hours, so most of the day. I get the anti nausea drugs along with the rituxan, so they’re not skimping on the good stuff. I ask how the chemo is going to affect me and how badly. The doctor said it really depends on the person, but typically most people feel like crap for 2 weeks after the chemo, feel better by the third week, then the injection starts all over again. The doctor also said that most people can tolerate the first or second injection ok, but it really affects them afterwards. I ask if I am able to still work, and the doctor says I might be able to, and if I am able to it’ll be under reduced work load. But there will be times where I am not going to be able to work at all. I will need rest during those times. The doc also mentioned that recurrence for my type of cancer is 20-40% over the next 3 years (yikes, that seems high) and if it does, I’ll have to go through the chemo all over again. I may have to switch to a different type depending how well it responds, and or do a stem cell transplant. There’s also another 20-40% chance of permanent sterility depending on how aggressive the chemo is going to be. The doc suggested I use a sperm bank and freeze some of the guys away for a rainy day. Unfortunately Kaiser doesn’t cover that, so I’d have to pay out of my own pocket, and it’s not cheap either. We ask about getting a second opinion, and the doctor is all for that. Unfortunately Kaiser doesn’t cover a second opinion outside of kaiser’s network, so if I get one at UCSF, it’ll be out of my own pocket. But I need to get my lab tests done first because they’ll need it before I get the second opinion. My sister asks the question how the cancer treatment is coordinated at Kaiser, apparently at UCSF, there’s a team that determines the course of action for a patient. At Kaiser, everything goes through the oncologist, and gets coordinated by the oncologist. So getting a second opinion is strongly suggested.

We now start going over some of my symptoms, and I tell the doctor about my heavy itching and scratching constantly, occasional heaviness in the chest, the pressure I feel in my throat, and the now worsening cough. The doctor was somewhat concerned, and wanted to put me on prednisone, a strong steroid, immediately. But the prednisone would screw up the bone marrow biopsy results, so the doctor wanted to do the bone marrow biopsy right now.

I had originally assumed that this appointment would just be a initial visit, and would last just a couple of hours at most. I had planned on going back to work, and start prepping for my big 48 hour downtime project that’s set to happen Friday night at 7pm. I’ve been working on this project for 6 months now, and had to schedule a downtime with the entire company for this weekend. I start going on about my work, and saw that it was still pretty early in the day. I figure I could do the biopsy, get a few hours of rest, work through the effects of the drug, work for a couple more hours until I reach a point where I can let it sit and process overnight and continue on in the morning. So I agree to do the bone marrow biopsy right there and then.

Bone marrow biopsies are not fun. They describe the procedure to me as sticking a big needle in my bone to draw out the bone marrow. I read they may do both sides of the bone marrow, so I ask if they’re going to do both sides, and they said no, they normally don’t do bilateral bone marrow biopsies anymore. Whew, at least it won’t hurt twice as bad.

This is what really happens during a bone marrow biopsy. First they load you up with what I believe was admar, a tranquilizer. Then they give me demeral, a narcotic, then they shoot the affected area with lidocaine to numb things up. Having been shot with lidocaine before, I can tell you each and everytime they use the needle, it hurts. They have you lie on your stomach, and use very big needles, and “drill” into your bone with the big needles far enough to reach the bone marrow. Now needles are not drills, so the drilling motion is more like twist and jack hammer the needle into the bone so it’ll go far enough to extract the bone marrow in the middle. The lidocaine works pretty good when I comes to numbing the flesh, but you can’t really numb the bone, so when they started jackhammering the needle into the bone, it hurts like a mutherfucker. They told me to breate deeply, it won’t hurt as bad. I do my Lamaze type breathing exercises, which do help a bit, but I can still hear the doctor and nurses grunting away as they jackhammer this giant needle, which I’m glad I never got to see, into my tailbone. They eventually get in far enough and draw out some bone marrow fluid. They then tell me they’re going to get a piece of the bone for biopsy as well. Hey, I don’t remember them mentioning this part, or reading this on the web. They then proceeded to jackhammer even harder into my bone, trying to chip a piece of it off. As the doctor was jackhammering she mentioned between deep breaths, how hard my bones were, and that it was a good thing. Maybe not quite such a good thing at that moment in time, as she was really putting a lot of effort into chipping off a piece of the bone. Eventually with a sigh of relief, the doctor said that she got a good sample, then proceeds to start the bone marrow on the other side. By this time I was too groggy to realize that the doctor had initially said they’d only do one side. Back for another round for furious jack hammering and drilling on the other side of the tailbone to get the bone marrow. After the doctor worked up quite a sweat, they decide they’re not going for another bone sample on the other side, and I was quite relieved that it was finally all over.

As I was extremely groggy from all the medication, they sat me upright in a chair, and brought Betty in. Vicky and my parents were outside in the waiting room, probably eating lunch by now, and betty was conversing with me for what I think was a few minutes, but betty said it was about 30 minutes. I then was getting thirsty and asked Betty if she could get me some water. As soon as she stepped out the door, I suddenly started feeling really light headed. I thought to myself “Uh-oh, this isn’t good, I should do someth…..” and I passed out. Betty came back to the room, saw that my eyes had rolled up in the back of my head, and my head was limp on my neck. She freaked out, called the nurse over. All the nurses and doctors freak out. They grabbed the crash cart, the one with the paddles and stuff, and set it outside the room. Apparently the Demerol had made my blood pressure crash, so when they tried to take a blood pressure reading from my arm, I had none. All the blood had pooled into my body. They kept calling my name and and trying to wake me up, but I was unresponsive. They got me flat on my back and kept trying to get me to respond. I remember starting to come to, and noticed there were like 5 nurses and or doctors around me. One person was continually calling my name, one was putting a IV in my arm, I think one of them was hitting my chest because I had a small bruise like thing on my chest, I’m not sure what the other people were doing. They said I may be metabolizing the narcotic too slowly, and started to give me something to counteract the narcotic. Betty asked if this has ever happened before, and one of the nurses said this never happens. Then whaddya know, immediately after me someone else with the exact same procedure had the exact same thing happen to them. Later on the nurse says I can’t believe it, this never happens and then suddenly two in one day! Vicky comes back and find out I've been given 50mg of demerol. She calls her friends at UCSF and they say that they gave me a lot of demerol. That's probably why my blood pressure crashed like that.

I’m still groggy from the narcotic, and they give me some more of the anti-narcotic stuff. I’m slowly trying to fight the grogginess, but it isn’t until almost 4:30pm when they decide I’m fit to leave the hospital. I spent the entire day at the hospital, so prepping for my big downtime wasn’t going to happen. I head back home and spend an hour or two napping on the couch until it was time to start the downtime. I’m still pretty tired, and now I’m in some pain. But I work for a few hours, enough to start the initial processing part where I can let it sit and do it’s thing while I go and sleep.