You know how it goes on TV shows and movies where someone is diagnosed with cancer. The characters are usually sitting in the doctor's office with their loved one and the doctor says "I'm sorry to tell you this, but you have (fill in the blank) cancer, and six months to live". Everyone immediately starts crying and hugging right there in the office.
Here we are almost a full month into my dad's cancer journey, and I've yet to sit in a doctor's office with him, and I have absolutely no clue how long he has to live. The information we do have, has come to us in bits and pieces, from my dad himself, and through phone conversations with doctors. We won't be having that sit down with the doctor for almost 3 more weeks, and the suspense is killing me.
I'm not angry that we don't know what to expect yet. Its due to the unusual circumstances of my dad's brain injury and the fact that he is receiving medical care in Syracuse, over an hour away from me and and hour from where he lives as well. My dad hadn't been feeling well for a few weeks, and was told by his Nurse Practitioner to go to the VA ER if he felt really bad over the holidays. So he did, the day after Christmas. My first phone call was from a nurse in the ER telling me that my dad had driven there, and that they thought he had diverticulitis. My dad was stable, but not up for talking, so I made plans to drive up the next day. By then they had decided to run more tests and by the 2nd night we knew there was a mass. Two more days of testing while he was hospitalized and they were sure they had to operate. Since I'm an hour and a half away from the VA hospital, I was getting most of the info over the phone from my dad. The times I was there didn't seem to coincide with a doctor being anywhere in the vicinity, so I was also speaking to the surgeon by phone. By the time they let him go home for 4 days before the surgery, we knew he would be having a colon resection and it was most definitely cancer, but we had absolutely no idea of how bad it was.
Many people, especially the elderly, can develop what is called hospital psychosis during a hospital stay. This can involve hallucinations, and confusion while hospitalized. My dad already has a traumatic brain injury, and on a normal day suffers with short term memory loss and confusion when he is extremely tired. So being in the hospital is very hard on him and he definitely develops hospital psychosis. This has been a big problem when he tries to relay information to us from the doctors, we just don't know what is real and what he has made up as a result of his confusion. We have told the doctors and nurses over and over that he has a TBI, but they have never seem fazed by it. With all the privacy laws in medicine, it seems no matter what the patient's mental status, their personal medical info and results have to be told to them first, and then to family, and then only after their consent. While the doctors have kept us pretty well informed by phone, my dad has often been the first to tell us about upcoming tests and results, and we have found he just isn't always accurate.
So he went home for 4 days before the surgery, (on a strict liquid diet, poor guy) and we asked him to clean up his apartment and clean out his fridge, because he would be in the hospital for a week or longer post surgery.
He had the surgery on Jan 4th, and that day DID seem like a tv show, lots of pacing in the waiting room, having the nurses call the OR to see if he was out yet, and finally the surgeon walking into the waiting room in his scrubs to deliver the news from the surgery. This surgeon had seemed like a Debbie Downer type previous to the surgery, but when he came to us after the surgery he actually sounded positive. He said the tumor had grown out of the colon and into the abdominal wall. He said it didn't appear to have grown into any organs, and they had been very aggressive to remove it from the abdominal wall. He thought that this was the kind of cancer that could be taken care of with just surgery, but we'd have to wait for the pathologist's report to be sure it wasn't in the lymph nodes. We were able to go into the recovery room and see my dad. He was pretty lucid for a guy who had undergone a 4-5 hour surgery and my brother and I drove back to Binghamton feeling kind of okay about everything.
As we know now everything is not okay. But the bad news has still been just trickling in. Even when I spoke by phone with the oncologist, she was kind of vague. All I got from that conversation was that it is Stage IV and in four lymph nodes, and he'll need chemo. Not enough details for me, the detail queen. So on February 9th, we sit down with this lady doctor, and I'm wondering if that is when we're going to have our "made for TV" cancer moment.
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