This particular blog is to get you all up to date from the start until now. For the past two years I have been battling some neck and lower back pain. The summer of 2016 I spent time doing physical rehabilitation and chiropractic treatment. This provided some relief so I could at least return to work and I did. However, the pain never really subsided, just became manageable. As I never got full relief, I brought this to my doctor’s attention again in early 2017. He sent me to a back surgeon.
The back surgeon was more concerned about my neck pain, which I chalked up to years of popping my neck. He wanted some pictures that were more detailed than X-rays. I have a pacemaker due to open heart surgery in 2013 so I am unable to get a MRI. He ordered a myelogram with CT. This showed disk bulge in my neck area and my hip area which accounted for the back pain. It also showed something else: a large nodule on my thyroid. He ordered an ultrasound and a referral to an endocrinologist.
I had my ultrasound and they confirmed a nodule on my left side that was approximately the size of my thyroid but a smaller nodule on the right side as well. I consulted the endocrinologist and he performed a biopsy and found it not to be cancerous. We discussed the options which were wait and watch it or have surgery. I opted to have surgical removal.
I met the thyroid surgeon and we discussed what needed to be done. He told me that he could remove the large half and watch the right side. I disagreed. I told him due to my age and heart condition that it was best to take out the whole thyroid in one operation. He agreed and we scheduled the surgery. I never talked to the surgeon after the operation but my wife said that he told her that he had to remove some lymph nodes and it was complicated. At the time we thought nothing of it. I stayed the night at the hospital and went home the next day. Came in a couple of days later and had the drains removed from my neck (thank God). I spent the next couple of days waiting until the follow up to be cleared to work again.
The follow up rocked my world. I met the surgeon and he told me that this operation threw him for a loop. He told me that he removed lymph nodes and had them sent to pathology which confirmed that I had Lymphoma but did not know what kind yet. We scheduled a PET scan, a referral to Cornell Beshore Cancer center and a surgery to have a port put in for chemo therapy. I was terrified!!
I drove a short distance and spoke to the HR rep at work and gave her my release to come back the next Monday and explained things to her. I called my father which sucked and tried to reassure him. I called my wife and tried to reassure her. I then told my son and tried to reassure him. These were of the most difficult conversations I have ever had in my life. One by one I tried to call or contact people before it got out. This exhausted me. I not only had to recreate the events that led to it but then spent a lot of time helping others deal with this. In the meanwhile I wasn’t dealing with it, just repeating over and over that this won’t beat me.
That Friday I got a call from the Cancer center and they had a cancellation. I went in for an appointment and spoke with their doctor. She explained to me that the cancer I had was rare and aggressive and that typical treatment did not respond well to it. It was called diffuse large B cell double hit lymphoma. The double hit came from the mutation of 2 genes instead of 1. She suggested I get a second opinion.
I called MD Anderson in Houston, TX and requested an appointment which they scheduled 2 weeks out on June 8. I freaked about money and setup a gofundme account to help with paying the expenses of treatment and travel. I returned to work on Monday, worked Tuesday, and had the Pet Scan on Wednesday. I was exhausted and sleeping almost all the time. I wound up leaving work on Wednesday and was sick on Thursday. I got a call from the surgeon who ordered the PET scan and said they found an aortic aneurysm measuring 4.4 cm. I lost it. I started making arrangements for my departure because cancer treatment and heart problems don’t play well together. I spent all but an hour that night planning a funeral, I was so sure how this was going to play out.
The next week I tried to cope with it. I came to the conclusion that I was useless at work. I was fatigued, depressed and riddled with anxiety. I wound up beginning my medical leave at that time (which was good for 3 months).
I met up with the cancer doctor on May 31st and she was impressed that we caught this so early. She said that usually it was spread everywhere but in this case the scan showed small amounts near my neck and around the surgery wound. She staged me at stage 1. We also discussed that there would be hardly any chance of my return to work in less than 3 months. I left her office excited and went home and slept well!
So here’s where we are: I leave for MD Anderson on Wednesday for a week’s worth of tests by the best cancer hospital in the US and we come up with a treatment plan. I begin treatment asap and go from there.
I’m sure I left a bunch of stuff out as I typed this in one setting from memory. One thing I do want to mention specifically is the level of support I have had from friends and family. There has been approximately $3000 raised to help me battle this and there have been so many encouraging words posted on facebook, messages left after donations, cards in the mail, visits and phone calls. While the money enables me to keep afloat and get treatment as well as take care of my family, the words fuel my spirit.
God bless and look forward to talking to you soon!