Fair warning: Last week I promised I’d break down everything we know so far, and what the doctors are going to do about the cancer diagnosis Randy received a few weeks ago. I know I should document all of this so there’s a good record. And I know there are people who want to know it all. Writing a post about it from beginning to end is a good way not to have to repeat it over and over again. I can simply request anyone who wants to know the whole story to read it here. But my heart is not in rehashing it all, so I apologize in advance if my writing isn’t up to par.
At the end of January, we went to Orlando to meet our sister-in-law from Wisconsin, visiting her family, who live there. We stayed in a nice Embassy Suites (our sister-in-law works for Hilton so she got us a room at the employee rate). During the few days we were there Randy began having what I call ocular migraines (I think they now call them aura headaches), pain free headaches where there are bright, colorful flashing lights and zig zags in your vision. I’ve had them before, as have several people we know. Usually, they are nothingburgers and last about 20 minutes. Randy had a few the first day, 5 the second day and more the third day.
On the way home I researched ocular migraines and read to Randy what I found. Dr Google suggests you seek medical help when they are accompanied by other conditions described in the article. On the morning after we returned (Feb 1) Randy came to me and said that he thought he should go to the ER. He had another vision disturbance and was also having trouble making his right hand work right, things like buttoning his shirt.
The ER was basically empty when we arrived at about 11 a.m. He was seen quickly and efficiently. After describing why he was there, a CAT scan of his head was ordered. It wasn’t too long before a doctor came into the room, sat down and said, “I hate to be the one to deliver news like this, but the CAT scan shows 4 lesions in your brain that are indicative of metastatic cancer.”
We looked at him like he had 3 heads. Randy didn’t have cancer that we know of.
We were at the Englewood hospital ER. Their hospital isn’t large enough to have a neurological unit which is what Randy needed, they said. They arranged for an ambulance transfer to a hospital in the area that could diagnose and treat him more competently. I insisted they take him to Sarasota Memorial where I’d been treated for breast cancer rather than Fawcett Memorial in Port Charlotte (which is in the same hospital system as Englewood). There was a little bit of pushback on that, but in the end, they did get a transfer to Sarasota arranged.
Randy had to be transferred by ambulance to Sarasota even though he seemed completely fine, physically. I guess the rules are that if we wanted to drive ourselves to the ER in Sarasota he had to be discharged from the Englewood ER AMA (Against Medical Advice). They warned us that if that happened, it’s possible we would have problems with insurance coverage of the Englewood ER visit. At times like this, you certainly don’t want to add insurance issues to the medical issues.
Randy went off in the ambulance and I went home to pack some things for him as they told us he was likely to be admitted to the hospital. I arrived at the Sarasota hospital about 4:45 p.m. By 6 they told us that yes, they were waiting for a room so he could be admitted. They did another CAT scan of his head, then ordered an MRI of his brain. Randy likes to joke that he’s glad they confirmed that yes, he did indeed have a brain.
By 7:30 p.m. we realized there was nothing I could do there because we had no idea when he’d actually get into a room. On a Sunday night in an ER, there’s not a lot happening. We agreed I should go home and return in the morning. That turned out to be a good decision as they didn’t bring him to a room until nearly 6:30 the next morning. During the night they also did a chest CAT scan.
I arrived at the hospital the next day, bringing a few things he asked for since it appeared they were going to keep him another night. The chest CT scan showed that he did, indeed, have a small fist-sized mass in his right lung. While I was there, in the afternoon, they did a biopsy. Because there were already indications that the suspected cancer had spread to his brain, they were able to biopsy his right supraclavicular lymph node rather than trying to get to the lung mass. It took about a week for the pathology on that biopsy to come in but it did diagnose Adenocarcinoma (cancer) with no way to pinpoint the exact organ of origin with 100% certainty.
They kept him one more night (3 total) so he could meet with a Radiation Oncologist in the hospital. They moved quickly to get him scheduled to begin brain treatments. He’s already had 3 sessions of radio surgery (kind of a modern miracle) where they targeted 12 brain lesions. He goes back in 5 weeks and has another Brain MRI to determine the next step in treating the brain cancer.
We met with my medical oncologist in Naples last Friday. There isn’t much new to tell there as before they determine a treatment plan, Randy needs to have a PET scan and a full molecular profile of what they are calling the cancer in his body. The molecular profile has begun with blood work done in his office. We made the decision to transfer to a primary medical oncologist in the Englewood office so he can recommend tests and treatments much closer to home.
My Naples doctor assured me he would continue to work with the local oncologist to the extent we want him to, but officially, a patient can only have one doctor of record with Florida Cancer Specialists. He did give Randy (at our request) a prescription for ivermectin and mebendazole, saying they may not help, but he didn’t think they’d hurt either. Getting those prescriptions filled is problematic, but at least we know the right doses now.
Randy has an appointment scheduled with the Englewood oncologist tomorrow. He will order the PET scan after that appointment.
That’s what we know so far.
In the meantime, except for a nagging cough we both have (which I think is allergies although Randy’s might be a bit more complicated), Randy is really good, both physically and mentally. We all know that spiritually he is a rock star. We ask that you continue to pray for him, that he stays well right up until the time that God calls him home, whether that’s sooner or later.
P.S. We’re having great fun with our visitors. Eating too much and keeping our minds and hearts on living life to the fullest while we can. I’m grateful they’re here.
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