Feb 19, 2013 - 7:02 pm
What an absolutely crazy two days. I had an appointment to go see my surgeon on Monday morning to get the staples out and getthe results of the biopsies and surgery. I did make it to my appointment but unfortunately not in the manner I would have preferred.
I went to bed Sunday night and was awakened by a choking sensation around 2:45am. I went to the bathroom and it felt like I had a "lugie" in the back of my throat. I coughed and felt it coming so I did he usual "hock-spit" and out came a huge blood clot and a lot of mucous. I spit again and there was blood everywhere! Ok, Ok... don't panic... I rinsed a few times but I was definitely bleeding pretty freely.
Not wanting to disturb Marcia, I went downstairs and got a glass of ice water and gargled. I had a bit of bleeding on the first tonsillectomy and gargling with ice water stopped the bleeding. 15 minutes later the blood flow began to lessen and I thought I had quelled the flow. 5 minutes later, I felt something large and uncomfortable again in the back of my throat and again, out comes another huge clot! Now I'm literally dripping blood from my mouth. This was not good!
I went with more ice and ice water but it wasn't stopping. It had now been close to 45 minutes (3:30am). I woke Marcia and we drove to the ER here in town. I was bleeding pretty badly when I got there. They got me in a bed, IVs set up and the doc came to see me. He couldn't see the source of the bleeding but it was coming from the back of my throat. I continued to rinse and spit and again it slowed down and then stopped. At that time, the ER doctor was on the phone with Johns Hopkins. The ENT on call said if it stays quiet then we're good. The moment he said that, another clot came up and I was bleeding again. Ok... this wasn't good at all. If fact, we're talking REALLY bad. This was a life threatening situation. The hospital where I was at was not prepared to do surgeries like that. I needed to get to Johns Hopkins STAT!
The ER doc wanted to fly me to Johns Hopkins via helicopter. It's a 45 minute flight as opposed to a 2 hour drive. Unfortunately, I could get there faster by ambulance based on the copter's availability so off I went.
I bled moderately on the ride over but they kept me stable with fluids. I arrived at Johns Hopkins at 10:30am (in time for my appointment with Dr. Richmon). They were all aware of what was going on and within 25 minutes of my arrival I was prepped and ready for emergency surgery. Dr Richmon met me in the OR and that's all I remember until I woke up in recovery.
Very fortunately I didn't have a "blowout". It was more like a slow leak but nonetheless, it still was a very dangerous emergency situation. The wound was quarterized and repaired. This happened 11 days after surgery and is very rare. There is no explanation other than the blood thinners I'm on for my heart probably had something to do with it. It's also a VERY rare occurance, happening in only 1-2% of surgeries like mine. I lost about a pint of blood through this little ordeal.
So here I was at Johns Hopkins again, fresh out of surgery with throat pain to end all! It was almost like starting over! (I did get the staples out and the incision looks good).
The great news is I'm alive! :)
On Monday evening Dr. Richmon came to see me and everything looked good. He then went over the results of the biopsies and surgery on the 7th. The removal of the two large tumors we very successful. He also took another 24 lymph nodes from my neck and he feels he was able to remove all the cancer. Unfortunately, all biopsies came back negative. This truly is an unknown primary and as you all know, very rare indeed. Also, the tumors were extracapsulated, in other words, the seal was broken which means cancer cells are on the lymph highway. This means I'll be getting chemo along with the rads. However, one GOOD thing came of this... It's HPV positive! And again, as you all know, HPV H&N cancers respond very favorably to treatment.
I have appointments next Monday with the team. The sim will be done and mask will be made. The treatment plan will be laid out and the process of getting me lodging and treatment will be underway.
So the ship is being prepared for the voyage. It's just a matter of breaking the bottle over the bow and getting underway!
It's good to be alive and be able to tell you!