On 9/5 Gene was taken to the Northfield emergency room. He had been experiencing back pain for some time. When he went to work on 9/5, he became lightheaded and called Stacy to take him to the ER. 9/5 was a long confusing day. Northfield did blood tests and a CT scan. The blood tests indicated an elevated enzyme that is most often associated with a heart attack. The CT scan indicated many reactive lymph nodes. It was Northfields opinion that this was most likely a lymphoma diagnosis. Gene was then transported to Mayo’s (Rochester) cardiac unit.
After many tests it was determined Gene had a blood clot in his IVC. They put him on blood thinners and did many more tests to be sure that this was the only one. Rochester also confirmed that the scans indicated a lymphoma diagnosis and proceeded to do a biopsy of one of his lymph nodes. Upon the completion of the tests they felt Gene was out of immediate danger in regard to the clot. They had put him on blood thinners and sent him home on Friday with the shots to continue thinning his blood. They also set him up with follow up appointments with Ultrasound, Cardiology, and Oncology to get the biopsy results and official diagnosis.
On Saturday (9/9), Mayo called with preliminary results from the biopsy. The results showed Adenocarcinoma sarcoma. This was somewhat puzzling to the doctors because it is not a cancer that originates in the lymph nodes.
On 9/11, Gene had an ultrasound of his legs that showed no additional clots.
On 9/12 Gene met with cardiology in the morning. They gave him a clean bill of health in regard to his heart. They said that Gene’s heart and lungs were healthy and strong. That being said he needed to continue on the blood thinners to prevent any new clots from forming. The cancer diagnosis itself makes the blood extra sticky and increases the risk of new clots forming. Gene entered a clinical trial that switched his blood clot medication to a pill vs. shot.
The afternoon of 9/12 was the oncology appointment. Gene had a lot of anxiety in regard to this appointment but was looking forward to finding out what it was he was dealing with and what the plan would be going forward. Unfortunately the appointment created more questions than answers.
The doctors explained that the pathology of the biopsy suggested that it was a primary renal (kidney) cancer. That being said, there was no mass that they could find in the kidneys (Gene only has one good kidney. The other kidney has been corrupted by calcified cysts and only a very small part of it is functional). There were two lesions in the bone of his spine that they felt could be malignant but could not be sure without further tests. Gene also had many reactive lymph nodes both above and below the diaphragm. The doctors asked us to be patient and requested more time and tests in order to get a more complete picture of what was occurring. These tests would help them to choose the best treatment option.
Gene had a spinal MRI on 9/12. He was feeling pretty good this day. Eating (appetite) had been an issue for some time. On the morning of 9/12 he ate some breakfast and after his scans he stopped at the DQ and drank an entire strawberry shake. This was very reassuring as he had not eaten much for the previous two weeks.
On 9/13 Genes abdominal scan (MRI) was scheduled for 6pm. He reported feeling sluggish and “off” that day. He had an appointment with his family doctor in the afternoon. Gene’s back pain had been increasing and was quite severe at this point. Gene rated his pain between a 7 and 8 on a 10 point scale. Gene participated in his appointment with the family doctor as well as his scan appointment that evening. Stacy did notice some confusion or memory issues but thought it was most likely fatigue due to his pain/sleeping/appetite problems compounded by the stress of his recent diagnosis.
On the drive home on 9/13 things drastically changed. Gene’s confusion increased and he was having trouble following a conversation Stacy and Rick were having. His words began to get jumbled up and were running together. His agitation increased with Stacy and Rick’s inability to understand what he was trying to communicate. When Stacy informed Gene that she was taking him to the hospital, he began to yell and throw things. Stacy told him she would take him home if he could tell her her name. He could not.
On the arrival to the ER in Northfield, Gene walked himself in. His confusion continued to increase. He was not able to say the names of people but seemed to understand his relationship to them (i.e. would say that Stacy was his wife but could not say her name).
Northfield did blood tests and a CT scan. The CT scan was clear. They did not think Gene was having a stroke at this time. There was an option of giving Gene a stroke buster but with him being on a blood thinner the risk to causing active bleeding in the brain was too great.
His blood tests came back with an elevated enzyme that indicated heart attack once again. The Mayo (Rochester) cardiac teem accepted Gene’s admission and he was transported by ambulance.
Rochester did more tests and initially did not believe that Gene had suffered a stroke. They did a CT of the vessels in his brain and found a small clot. The information they gave us initially was very confusing. They stated that the only thing they could do for the clot was to continue with the blood thinners. That being said if the clot did not resolve itself within 24 hours of onset it would be considered a stroke and the most damage to Gene’s brain would have been done in the first 2-3 hours. For his family this was very confusing and difficult to understand.
On 9/14 it was confirmed that Gene had suffered a major stroke. There were also several smaller strokes that Gene was not suffering symptoms from. The major stroke was on the left side of his brain and primarily affected his language skills (being able to communicate as well as understanding what was being communicated to him). Gene also had right sided weakness that continued to evolve over the next few days. Gene was very confused at this time. He seemed to recognize his visitors but was not able to communicate much. His vision seemed to be giving him trouble as it was hard to focus.
On the evening 9/15 they started Gene on IV fluids. When Gene awoke on 9/16 he seemed to have improved. He was much clearer in his communication. He was joking and laughing and participating with those around him. It was a very good day for his family and friends who had been so worried.
That same day they decided to move Gene to the stroke floor. They had discontinued his fluids that morning and moved him around 6:30 pm. Prior to the move Gene seemed excited to move but once he got to his new room his confusion increased. On 9/17 his confusion continued to increase. His family requested that he be put back on fluids. Prior to fluids being administered Gene was very groggy and mumbling. About a half hour after he was started on fluids he was able to sit up and participate in conversations.
Over the weekend Oncology had visited with Gene and it was determined that radiation should be conducted in order to attempt to relieve Genes back pain. Radiation begun on 9/18 and Gene was moved to the oncology department at Methodist Hospital.
The oncologist met with Gene on 9/19 and informed him that the tests did indicate that the cancer had started in Gene’s cystic kidney. The cancer was also in the bone of his spine and in many of his lymph nodes. The radiation they had started was to control Gene’s pain and at this time they were looking at Genes medical needs as the priority. Gene was not able to eat or drink anything substantial. They prescribed a steroid that they hoped would increase his appetite. Physical, Occupational, and Speech therapy would work with him daily to try to regain his strength. After Genes acute medical needs were dealt with Rehab would become the primary focus. As of 9/19 they believed Gene would need long term rehab.
When it came to talking about the cancer the oncologist were very clear. While chemo could slow down the cancer it could not cure it. They diagnosed Gene with stage 4 cancer. That being said, they assured us that there were many different agents they could use to battle the cancer. Gene could live for years with this diagnosis.