It appears that the initial tissue biopsy was only good enough to give an initial diagnosis. However, there are many different types of Hodgkin's Lymphoma and Dr. Reichman will need to do an incisional biopsy to get more tissue. As of now, this is scheduled for March 5th. This is going to be done in the surgery center and I will be under general anesthesia. We tried to schedule this to happen the same time as the port insertion, but we came to realize that that procedure will not be done using general anesthesia.
What sucks is that this is scheduled for 1:30pm and I can't eat or drink (including water) after midnight the night before.
Just got back from the first PET/CT scan. This scan is meant to figure out how much the lymphoma is spread through out the body, if it has. The CT piece is a structural scan to see the lumps and stuff. However, that can be hard to see visually. So, the PET piece scans for the characteristics of different cells in the body. It does this by looking at tagged glucose, which is absorbed by cells to function, but because cancer cells divide more rapidly, they absorb more of the tagged glucose. So, the PET scan looks for places where the tagged glucose has been accumulated more.
The procedure was simple, but just took a while. After signing in, I was given a barium drink, that tasted like chalk. I guess after not eating or drinking for a while, I didn't mind it at all. They put an IV line into my left arm and did a brief glucose test using one of those testing tools that diabetics use. In the mobile PET/CT truck, I was seated in a reclining chair. They injected me with radioactive glucose through the IV line, followed by saline to flush out the IV, which was then taken out. Of course, I had to sit around waiting for this to happen for about forty minutes. I didn't have a book or anything to keep me occupied. Finally, after waiting around and being bored, I went to the bathroom to flush out any residual chemicals that were in the bladder.
Now, the fun part. I sat on the bed for 20 minutes while the bed moved back and forth under the scanner. It was pretty hard to sit still for so long. It did seem like an eternity.
The results were supposed to be done an hour after the test, and the doctor will be getting them by tomorrow.
I'm blown away by all of the support that I've been getting lately. I've been calls and emails from friends and family telling me how much they support me and that I shouldn't worry and that I'll beat this thing. At times, it's repetitive saying the same things, that I'm doing fine, I have no symptoms, I'm just being as normal as possible. But, in all cases, it just amazes me how much people are thinking about me.
I feel guilty though. It feels like most people are more worried and shocked than I am. That makes me wonder if I'm not worried enough, or I'm not taking this seriously enough. I'm going through all of the tests and doing my appointments. But in a strange way, I don't feel like I've been shocked or gone through that "Why me?" phase. Or maybe I already did when my first doctor suggested it to be lymphoma. I don't really know. Maybe I'll go through that phase when the chemo starts.
I guess my way of coping is to just not think about it and to just live like normal, as much as I can.
So, today, I had the first of many tests. The first test was the MUGA scan. It is basically a scan of the heart to see how the heart is beating. The Adriamycin drug (A) of the ABVD chemo treatment can affect the heart. So, to make sure that I can take the A drug, it's necessary to see how the heart functions.
I went to the Radiology lab at Rose Medical to get this done. The first thing that David, the technician, did was to stick a line into the vein of my right arm. Once the line was in, he could extract or add anything. So, they extracted about 3-4 cc's of blood. Then I had to wait about 20 minutes for him to radiate the blood. This basically tags the blood with some radio isotopes so that they can see how the blood is flowing through the heart by counting the radiated blood cells. Once the blood was radiated, David reinserted the blood into my bloodstream via the line.
There were two ten minute scans. For both, I was lying on a bed while I was positioned under the scanning plate. For the first scan, it takes a look to see how the blood flows. The scanning plate is positioned at an angle of 45 degrees. On the screen, it looks like a big blob, but it still gives the best information. The second scan is used to see how the heart itself beats. The scanning plate is positioned parallel to the chest. I wasn't paying too close attention to the screens this time, but from what I did see, I still couldn't tell what was really going on.
I would have been bored if David wasn't so chatty...so that made it go much faster.
It was a pretty painless (except for the line) procedure.
On Thursday, my dad and I went to the Rocky Mountain Cancer Center to meet up with Dr. Alan Feiner to discuss the schedule of treatments that I would be receiving. Dr. Feiner seems like a pretty smart guy and someone to trust on this, even though he also seems to be a bit spacey. Spacey in the way a professor can be, but still quite intelligent and knows what he is doing.
When we got there, he did a basic examination, checking for lumps in the neck, armpits, groin area. He also went through the list of questions, "Do you have night sweats?", "Changes in eating?", etc. Of course, I've been asymptomatic, so most of the answers were basically, nothing unusual.
On Friday, I met with Dr. Alice Cook at Presbyterian St. Luke's to get a second opinion. I got the name of this group of doctors from my brother-in-law's father, who is a pathologist in Michigan, who contacted a friend of his in the Denver area. Again, we went through the question and answer sessions. Dr. Cook was very talkative and really described everything that we wanted to know.
Here's what we basically learned from both. The cure rates for Hodgkin's lymphoma is pretty high (as we all know). It's quite possible that it will only take 2 cycles of chemotherapy, and not require radiation. Of course, everything depends on how I react to the chemo. A chemotherapy cycle is 28 days, where most of the chemotherapy is done on days 1 and 15 of the cycle. The standard operating procedure is to use the ABVD set of chemo drugs. One thing is that pretty much all places follow the same flow of treatments. In fact, Dr. Cook gave a set of handouts showing the basic flow diagram from the National Institute of Health that all hospitals pretty much follow.
But everything first starts with tests.
Unfortunately, there are many different types of Hodgkin's lymphoma, and a needle aspiration doesn't tell everything. I have to go back to Dr. Reichman (ENT) to get either an incisional biopsy or excisional biopsy on the same lymph nodes. Incisional means that they take a slice out, where excisional means they take out the whole lymph node. In the end, they can look at the structures and tell what kind of Hodgkin's lymphoma it is.
With ABVD, there are a few things we need to keep an eye on. The first is the A drug, which can affect the heart. So, that means we need to get a heart scan to see how the heart will function. The B drug can affect the lungs. So, that will require the pulmonary function tests to see how the lung capacity changes. I've had plenty of these because of my asthma.
There will be plenty of blood tests.
This week, I'm going to have my heart scan. I also have a PET/CT scan. The PET/CT scan is a full body scan which they will use to see where else the lymphoma has spread, if it has. The CT scan is like an x-ray which they can see the structures of the body. The PET scan, they can see the composition of the body, which is almost like a heat map.
The next test is a bone marrow biopsy. They basically core a hole in the hip bone to extract a few cc's of bone marrow. From what I hear, this is not a pleasant experience. I look forward to writing about it afterwards.
Then the following week I have the port insertion. The port is a catheter which makes it easier to deal with repeated chemotherapy. Without the port, it would require using an IV which must be inserted everytime. And, while it would be annoying to be pricked every time, it also has risks in that it could damage internal cells, especially if the chemo sticks around for too long. With the port, the chemo would go directly into the bloodstream and be immediately distributed.
So, chemo is scheduled to start in mid March. Still trying to finalize the dates.
After both appointments, I think I'm comfortable going with Dr. Feiner. Both doctors said the same things, but in the end, it is just a matter of personal taste.
Cancer is a scary thing. But, I don't feel like I have it. My only
symptom has been this damn lump. I must admit, I think I may be in
the denial phase. I, at times, think that the oncologist is
going to say something like, "Hey, we were wrong." So, instead of
huddling up and preparing for this thing, I'm doing my normal
thing, like preparing for the move, or working, or going to dinner for
Valentine's day.
I guess it is a bit weird having people call me
and tell me that they are supporting me, especially when this feels
more like an inconvenience than a disease. And with all of the hype
that this is pretty beatable, I also feel a bit guilty because we've
known people who've gone through much worse, and what makes me so
special.
But it is cancer and I guess that's not normal.
I'm so fortunate to have so many people who can support me. I have so
many friends and family members who are in the medical profession. So,
at times, it's a bit overwhelming, especially since I don't really feel
that bad. I think more people are worried than I am. But I do
appreciate the support. It's going to be a long road ahead and I'm
going to need it.
So, at this point, I'm still waiting for the
first appointment with the oncologist...still waiting...in the
meantime, I'm starting to prepare for the inevitable.
Well, it still hasn't sunk in that I was diagnosed with lymphoma. A bit surreal and maybe the doctor was wrong. I don't have any symptoms other than a lump in my neck, so, right now, it feels like an inconvenience more than anything. And at this time, all I can really do is wait for the tests to start. I just want to get this going, so I can be done with it as soon as I can. But I guess it's going to take some time...
In the meantime, life is just as normal as it can be. Of course, now
with more vitamins and more exercise so that the immune system is
prepared to take this on.
I never realized that people actually read this blog. A few of my friends have emailed me after finding out by reading this. Thanks, guys, for your support!!! I think I'll be updating this blog more often to keep people informed. And it's already starting to feel therapeutic to write something down. Now, only if I can spend a few moments to pretty up the web pages to make this look nicer.
One thing at a time.
My ENT doctor called me with the results of my tests. Hodgkin's Lymphoma.
As a bit of background. A month or two ago, I noticed that the right side of my neck was swollen. At the time, I had assumed it was a muscle strain, because I had overdone it in a yoga class earlier in the week. It didn't hurt, but it was noticeable. With a bit of massage, I really thought that the swelling had gone down. Instead, the swelling just seemed to fluctuate...not getting too much bigger, but not too much smaller.
I finally then made it out to see a doctor. Of course, my doctor, with little bedside manner, managed to scare the living crap out of me by telling me that it was a pretty serious issue. CT scans were required. Of course, at this time, my insurance was changing because of the Oracle acquisition. It took about a two weeks to finally get this done.
Next day, my doc calls me in and tells me flatly that it's most likely lymphoma. Of course, didn't get the bedside manner I was looking for. His first recommendation was to go see an oncologist.
Ok...at this point (two weeks ago), I am starting to freak out. What the heck is this, what am I supposed to do? I don't know what questions to ask my doc and I don't really think he was interested in spending the time to help. And why is it taking so long to get an appointment with the oncologist?
At this point, I decided that this doc wasn't really helping. So, I went to get a second opinion from Dr. Schreiber at Rose Medical center. He read the same report of my scans and said, that yes, it could be lymphoma, but it could be a bunch of other things. The real thing to do was to see an ENT to get a biopsy done. An oncologist was way too soon in the process.
I went to the Dr. Reichman at Rose Medical last Thursday to get the needle biopsy done. That hurt. The first time, they basically stuck the needle in my neck and then moved it back and forth to loosen up the cells. I was groaning because I could feel it as he moved the needle back and forth. A quick test under the microscope confirmed that the problem was in the lymph nodes. Second time. Again with the needle. At least, I felt more prepared, but it still hurt. Afterwards, Dr. Reichman spent some time answering our questions. He even showed me the CT scan where the lymph nodes were all swollen. It was pretty scary just looking at this.
Of course, more waiting. Friday comes along, I was hoping for preliminary results. But it was quite unlikely because the sample had to be shipped to California for testing, although I don't really know why. Saturday. Sunday, I went to Carolyn's 30th birthday party, which definitely got our minds off of things. Monday...still no results.
At this point, I've already starting concentrating on other things like work. I'm not even thinking about this. I was assuming that things were fine because there weren't any other symptoms and I was told that it was quite possible that this was benign. I certainly didn't expect the diagnosis that I was given.
It still hasn't really hit me that I have cancer. I think that other people are more worried than I am. It's hard to all of a sudden have a shift, especially, when I already went through my freak-out phase. The bright side was that it was Hodgkin's lymphoma, which has a very good success rate. As my brother-in-law put it, "If there was a cancer you had to have, this would be it."
So, at this point, I am just waiting for the next appointment with the oncologist. Not much else can be done except to push on. There's a house to close. Valentine's day dinner. There's no need to mope around the house.
I've talked to the family already, and I know I'm going to get their support 100%. Of course, our friends have given their support as well. This, I'm so grateful for.
Bring it on.