Going Back in Time

I realized the other day that I do not have a blog entry that explains how I was diagnosed and the symptoms that I experienced before my diagnosis. I would like to add that now while I still have a good memory of what occurred. The intention of this blog is to act as both an update for friends and family and as a record of my cancer experience so I can go back and refresh my memory for years to come.

My first experience of cancer started in August of 2007 when I still lived in Texas. I did not realize it at the time, but I began feeling my first symptom of cancer. I had a strong pain in my lower back that was activated every time I was standing up straight. Due to the abdominal pain I frequently experience with Crohn’s Disease, I have learned to tolerate a good deal of pain without complaint. However, this new pain drove me to hunch over or sit down after just a few minutes of standing. Even though the location of the pain was nothing I’d experienced before, I shrugged this new pain off as a symptom of the Crohn’s flare-up that I coincidentally was experiencing at that time.

The back pain continued as I packed boxes in preparation of the move and even as moving day arrived and it was time to load the Penske truck. Rebecca could sense how much the pain was affecting me, and she lovingly packed and loaded considerably more than her share of boxes. This pain continued throughout the move.

The next cancer symptom that I experienced started the week after I had arrived in Colorado. I began having night sweats that occurred most nights. I mistakenly attributed that as a side effect of the Prednisone I was taking to combat the Crohn’s flare up. Prednisone had caused me to sweat at night before, so this was logical. But the back pain continued and Rebecca finally was able to convince me to go to the emergency room one Saturday. When we arrived, I told the nurses and doctors that I expected the pain was Crohn’s related. They ordered a lower-abdomen CT scan to be done, and gave me pain meds and steroids intravenously. The CT scan showed enlarged lymph nodes, which the ER doctor instructed can be a result of a Crohn’s flare-up. However, the radiologist noted in the report that lymphoma could not be discounted. This was the first time that the possibility of cancer was considered, but because the steroids and pain meds relieved my pain; I was released from the ER with an order to see my gastroenterologist on Monday. The radiologist also ordered that I have a lymph node biopsy performed on one of the lower-abdomen enlarged lymph nodes, which would require visual assistance with a CT scan.

I visited my gastroenterologist as ordered, and we discussed different treatment options because obviously my Crohn’s was not being controlled. The only immediate actions taken were an addition of Entocort to the oral medications I was already on, and scheduling the CT-biopsy. One suggestion was made that I increase the dosages of Remicade and Azathioprine. Ironically, these two drugs may have caused my cancer, or at least aided in its spread.

Finally, a few days later, I began running fevers. On the Friday before Labor Day I had a fever of 103.1 after running a fever of 102.5 the night before. Rebecca convinced me to go to the emergency room again. I was embarrassingly admitted to the ER with a diagnosis of “Fever” in a room next to heart attack and car accident patients. Again, I instructed the nurses and doctors that I was experiencing a Crohn’s flare-up and that I suspected the fever was a result of a blockage causing an infection. Because of my short time between ER visits, the ER doctors decided to admit me to the hospital, even after a second CT scan showed no blockages.

I stayed at the hospital for the Labor Day weekend with little more done than fever and pain management due to reduced hospital staffing. The second CT scan was of my entire abdomen and showed enlarged lymph nodes scattered throughout my abdomen, which stumped the gastroenterologists. Finally, on Tuesday, the staffing needed to perform a biopsy was in attendance. They chose to perform the biopsy on a lymph node in my neck, because it was more accessible. The original plan was to biopsy a lower abdomen lymph node before the full CT scan showed the other possibilities. The majority of the duration of the biopsy was prep using the ultrasound probe to determine the optimal path to avoid large blood vessels. Only local anesthesia was given for the prodecure, which was quick and relatively painless. A large needle was inserted into my neck under ultrasound guidance. After an audible click, which felt like a little pressure within my neck, the biopsy was taken. The doctor took five separate biopsies, which is standard procedure. I was released from the hospital right after the biopsy, with an appointment with my primary care physician that Friday to discuss the results of the biopsy. I was feeling better, because the intravenous steroids had cured my Crohn’s flare-up.

Two days later, on the evening of Thursday, Sept 6th my gastroenterologist called me with the biopsy results. He informed me that I had Hodgkin’s Lymphoma and that he and my primary care physician would refer me to an oncologist. The next day I met my primary care physician for the first time, and was referred to Dr. Kenney. I made an appointment with him for the following Thursday, when he spent over an hour with Rebecca and I explaining Hodgkin’s to us and answering our questions.

The next week was a blur as Dr. Kenney insisted upon beginning treatment as quickly as possible. The following day he performed a bone marrow biopsy right there in his office. I simply laid down on my stomach with my pants slightly down to reveal my hip, and gripped on the examining bed to endure the pain. Despite the local anesthesia that was used, the pain was extraordinary. First, Dr. Kenney had to penetrate and core out a section of my hip bone, which he did by literally using his own body weight as force. That pain felt like extreme pressure on my hip. After he removed an inch long cylinder of my hip, he had to extract some marrow. I was worried when he gave warning of the pain that was coming especially after the pain that had already occurred. He did not disappoint. The pain from the marrow extraction felt like my soul was being sucked/yanked out of my body. Thankfully it was over very quickly, and I left with just a bandage across the small of my back.

That same day I visited the Advanced Reproductive Center at the University of Colorado Medical Center. Rebecca and I decided to bank before treatment, because chemotherapy can cause infertility that can sometimes be permanent. I returned on the following Monday as well as recommended to increase the chances of future success. That was an awkward experience.

Two days later, on Wednesday, I had both a MUGA scan and my first PET scan. The MUGA (MUltiple Gated Acquisition scan) is a scan of the heart where the ejection fraction of the left ventricle is measured. The left ventricle is the major pumping chamber of the heart so the ejection fraction a basic measure of the overall health of the heart. The MUGA is performed because Adriamycin can be toxic to the heart muscle, and can lead to heart failure. I will likely get another MUGA now that treatment is over, to determine if any damage has been done to my heart. The PET scan was also performed prior to chemotherapy to use as a baseline comparison to the PET scan after treatment.

The next day, Thursday Sept 20 was my first day of chemotherapy. The first week of treatment includes Nitrogen Mustard, which is very caustic to veins. At this point, my port had not yet been implanted, so the chemotherapy had to be given intravenously through a standard catheter. My veins in my right arm hurt for several weeks as a result of this treatment.

The following Monday, I had the port implanted. This procedure was done in radiology so the doctor could see the tube placement during the procedure. Again, only local anesthesia was given, so I was able to talk to the doctor during the procedure. It was not too painful, even after the anesthesia wore off, and it was definitely worth it.

Sometime early in the chemo regimen, I am not too sure when, my cancer symptoms stopped. I had experienced most of the classic symptoms including night sweats, unexplained fevers, and weight loss. By the time my cancer symptoms ceased, I had lost 20 lbs, going from 155 lbs to 135 lbs. I did not notice this symptom until I went to the emergency room because I don’t normally weigh myself very often. I did not experience persistent itching or the most common symptom of a noticeable lump caused by an enlarged lymph node. Typically, this is found in the neck or armpits. I did have one unusual symptom of pain in my lower back.

This brings me to about the time that I started the blog with my first entry during week three of the treatment.