So, it has been a long time since I posted. The last post I told you about having to go to the hospital and finding out I had a heart problem. The lining of my heart was collecting too much fluid. It’s been a rough few months and I want to share it with you.
I have been feeling exhausted for a while now. I mean I barely made it through work and then slept as soon as I got home tired. I slept all weekend as well. I started coughing in August and by October it had not stopped. On October 22nd (2 days after my birthday) I coughed up blood. I went to the doctor and he sent me for a chest X-ray. In the X-ray it looked like my heart was enlarged. So, he sent for an echocardiogram.
I went for my echo and the tech had me wait while he showed the doctor. I thought that he was just being nice. It turns out he has been doing this for 25 years and saw something the doctor needed to see right away. The cardiologist called my doctor and they told the tech to tell me to go to the ER right away. As you can imagine they freaked me the Hell out. I called my boss and my Dad on the way to the ER.
After the ER doctors got my results from the test a cardiologist came down and told me my heart looked enlarged because there was a build up of fluid in the sack around my heart. It was a lot of fluid and they were very concerned it would put pressure on my heart. If they didn’t remove it then it could stop my heart.
I got checked in. They told me I had to have a procedure to remove the fluid. There are two ways of doing that depending on your condition. Most common way from the outside of your body put a needle through to the sack and drain it. Then a little more invasive cut you open and put the needle through the sack. To know which one they needed to do they sent me for a CT scan.
After the CT scan I got a visit from three different specialist. First my cardiologist who got to give me the news. Then a pulmonary specialist. Then a thoracic surgeon. When they looked at my CT scan they saw a mass in the chambers of my lungs. The cardiologist said he only knows heart stuff. The pulmonologist said that is might be that the lymph nodes are infected or enflamed. The thoracic surgeon asked me they same questions they did, but two or three times like my answer would change. He talked to me about different types of autoimmune diseases. Then he brought up cancer and told me not to worry they partner with a hospital that is great with cancer treatments. He was they only one to bring up cancer. They all agreed I need a biopsy. So after draining my heart sack the hard painful way I got to go home for a few days before my biopsy. By the way they drained two Coke cans worth of fluid from that sack. I saw it when I woke up in the OR. It looked like a pitcher of beer.
To do this biopsy the put me under and put a special tool down my throat. It had a cutting tool and camera. They took just a little piece of it. The doctor told me it would take a week for the results. They all were hoping by testing the fluid and this biopsy they would find out why my pericardial sack was building up so much fluid.
It didn’t take a week before one important test came back. In fact it was the next day when the doctor called to tell me it was Lymphoma. After that everything just felt like I was on a speeding train. I had no control and it felt like no say in what was happening. I got a call telling me I had an appointment at another hospital with an oncologist.
Then I got a call that I also had an appointment with another doctor also at the cancer center the same day, but an hour before. Then I got a call saying early that same day I had a PET scan scheduled. My Dad looked up the other doctor after I told him they didn’t tell why I was seeing him or what his specialty was. Turns out he is a thoracic surgeon that specializes in doing lung biopsies. His name is Dr. W for this.
Dr. W told me I was going to get a Port put in. You see I have horrible veins. My stay at the first hospital was torture. My arms were covered in bruises. A port is something they put in your chest under the skin. It is connected to veins in your body. For me my juggler vein. They can just poke a needle in the port through your skin. Then they can either get blood or medicine can go through it. So, it’s a less painful IV that is always with you. He told me the oncologist I had not seen yet night want another biopsy that was more invasive. He would cut into my side and go up into my chest. Dr. W also informed me I might also get a bone marrow biopsy.
Next was the oncologist Dr. K. She told me I have Non-Hodgkin’s Lymphoma. There are different kinds and to know which treatment to give me they need to know which one it is. So, I did get a bone marrow biopsy that day. Fun surprise! Also a lesson this whole thing has taught me is when a doctor says it will only be a little pressure they mean excruciating pain. I ended up also getting the other biopsy as well. All the bone marrow told us was it had not spread to the bone marrow. With the big biopsy they will be able to break it down and get it’s DNA. Which is what Dr. K was trying to get. The DNA of the cancer will tell them what type in is. Also when they were doing the big biopsy Dr. W had to cut open the pericardial sack to empty the fluid again because he couldn’t get to the mass. When he did he found more tiny tumors in the pericardial sack. Yeah more cancer!
Primary mediastinal large B-cell lymphoma is what I have.Or PMBCL for short. Stage 1 if it wasn’t for the tumors in my pericardial. That makes it stage 4. PMBCL is a rare type of non-Hodgkin lymphoma (NHL). It mainly effects young adults and is more common in women. If caught early chemo will knock it right out Dr. K told me. If it’s not caught early there is nothing that can be done. But yeah they caught mine early!
On January 16th I will be going back into the hospital for my third round of chemo. I will be getting six rounds of chemo. I have to be in the hospital for five days each time. My next blog will be about the emotional side of all of this. ‘Being Bipolar with cancer.’