I'm an 'oncology textbook'!

I had a checkup with my oncologist yesterday, and after the weekend that I had he said I am an oncology textbook. Everything that could be happening to me is happening, no matter how rare it is. The good news is that he is very excited about how well the treatment is working. As I see it, as long as the treatment is successful, I might as well be rare.

My last post was Friday morning before my chemo treatment, and before I noticed things were changing. As I was preparing for my appointment I noticed that my left arm seemed edematous, or swollen. The left arm is the one with the port. I noticed when I woke up that if felt a little funny, but more like I had slept on it wrong and cut off the circulation. That feeling slowly improved, but after a couple of hours I knew it wasn't going away. Then I noticed by just looking at my arms the left one was considerably larger than the right arm. My range of motion seemed decreased as well. Since I already had an appointment for chemo I didn't call the doctor, I just figured we would sort it out at the appointment.

Once at the cancer center, I showed the nurse my arm and she was immediately concerned about a blood clot associated with the port. This was what was in the back of my mind as well, but I was still just hoping I slept on it wrong. My nurse, Cathy, proceeded to measure the diameter of each arm, and it was clear that the left arm was swollen. She conferred with the oncologist on call that day, whom decided to proceed with chemo via an IV in the right arm, and then send me to the ER to check for a deep vein thrombosis (DVT). Basically a blood clot in one of the veins of my arm. The chemo must go on though!

Once in the ER they ran a doppler ultrasound on me and indeed found a DVT. This is commonly found in the legs, and is rare in the arms. However, with a port there is an increased risk. The real risk of a DVT is that the clot can move. If it moves to the vessels of the lungs it becomes a pulmonary embolism and is a life threatening condition. The docs in the ER were great. They don't see many DVT's in the arm, so they were in close contact with the oncologists, and together they put me on blood thinners. I am now on Coumadin and Lovenox. The wonderful news is that Lovenox is given by injection in the abdomen daily, and I get to do it myself! The hits just keep coming.

I finally returned home from my 11:00 appointment at 6:00 pm with a bag of needles and my marching orders. I crashed quickly with my arm elevated, and when I woke up a few hours later it felt like the swelling was already going down. The next time I woke up at 1:00 am I noticed that I felt quite warm and had terrible shooting pains in the small of my back. I checked my temperature and it was 100.8 degrees! Normally that means I take a Tylenol and go back to bed, but with low blood counts it means I head to the ER. Any temperature over 100.5 means I need to seek medical attention because it could be the start of an infection that my body is no longer able to fight.

So my mom rushed over to watch Ethan and Megan rushed me to Wyandotte Hospital, for what would be another long day. Again the ER docs were great. They took a chest xray, drew blood, and put me on IV antibiotics and fluids. It turns out I did not have an infection, but may have just had a fever caused by the DVT and the chemo in combination. Within and hour or two my temp was normal and I felt normal again. They decided to admit me in the hospital until morning when an oncologist could examine me. They did find that my blood counts had dropped, which was a shock to me. In the morning at my chemo appointment my WBC's were 5.1, and at 2 am they were down to 1.9! It is amazing how quickly these change, particularly when you add a little stress to the body.

Morning came and I felt good. My biggest concern was that my counts were low and I was sitting in a hospital where there are plenty of bugs to get me sick. The covering oncologist at the hospital saw me and felt the same way. He wanted me to go home and rest. He also spoke with the on-call oncologist at St. Joe's whom also agreed. So it looked like I would be headed home once the oncologist spoke to the discharge doc.

Unfortunately the discharge doc had other ideas. He came in and saw me for 5 minutes, ordered a CT scan, more blood work, a consult with a vascular surgeon, and he wanted me to stay overnight or longer. I said the oncologists were ready to release me, and his comment was "they are just specialist, I have to look at the big picture." I quickly called Megan to call the oncologist at St. Joe's again, whom again said if my vitals are stable, I am better off at home.

They came to take me for the CT scan, at which point I said "I am not getting a CT scan unless someone can explain why it is necessary. I have spoken with 3 different doctors, two of them have said go home, and one of them is requesting all of these tests. Tell me why I need them." The answer was that it is protocol in the case of a DVT to rule out a pulmonary embolism. In the end, that made some sense to me, but I still question why that was not suggested by any of the other doctors, including the one that saw me for the DVT the day before. I still did not have faith in the one doctor that seemed to control my discharge.

I decided to go ahead with the CT scan for a couple of reasons. First of all, a pulmonary embolism can kill you quickly, and if this will show signs of one before I develop symptoms that would be beneficial. I also knew that a CT scan was in my future at the end of this round of chemo to check the size of the tumor, so I could take care of it now. Finally, I figured the doctor would be back to discuss the results of the scan and that would give me a chance to talk my way out of the hospital. I also realized that I could just walk out at any time, but I was hoping to do it through the appropriate channels.

I returned from the CT scan at 2:00, and at 4:00 was still being told the results were not available, So I called Megan and said come get me. At 5:00 there was still no word from the doctor, so I told the nurse I was leaving. If the doctor was worried about a pulmonary embolism four hours ago, I could have died in the time it took him to read the results of the scan! Clearly I am OK to go home. That's not to mention that I was never seen by the vascular surgeon or had any of the other tests he ordered. I think this was the case of a doctor trying to make the hospital more money.

The nurse was understanding and said I would have to sign a release that I was leaving 'against medical advice' (AMA) unless she could convince the doctor to release me. She said most of the docs just sign the discharge once a patient is ready to sign the AMA paperwork so that the insurance does not deny coverage. It turns out, this doc was not willing to do that. So I signed the AMA paperwork, which I found ironic since 2 of the 3 docs said I could leave in the morning. I was really only going against the advice of one power-tripping doctor. I returned home at about 6 pm and had a wonderful night's sleep. I have felt great ever since; the swelling is slowly going down in my arm and my breathing is completely normal--no signs of a pulmonary embolism.

I saw my oncologist yesterday, and he said I am doing great. I am scheduled for more chemo on Thursday and will have a dye test of the port that morning to see if it is still functioning. If the clot has rendered the port non-functional it will have to be removed and a new one placed. I will also have a pulmonary function test on Friday that will measure the effects of the bleomycin on my lungs. I suppose that this may also show any effects of a clot in the lungs.

I continue to run through everything in the oncology textbook, and I continue to beat it all! Bring it on!