In the Doldrums

Warning: this is not an uplifting post but I am going through a rough patch and I need to vent. If you are looking for something uplifting, you may want to skip this one.

My father is gravely ill. I used to think of him as a cancer survivor. He had a couple of serious cancer episodes – in 2006 (prostate, bladder and colon) and in 2009 (throat/larynx.) The diagnoses were devastating in both cases but he underwent surgeries, had chemo and radiation both times and recovered. His larynx had to be removed in 2009, which was particularly hard on him as he was a talker but he learned to use an electrolarynx and was able to communicate and stay active. My parents have a house in a village in Bulgaria with a beautiful garden. My dad built a drip irrigation system and they grew wonderful fruits and vegetables every year. They raised rabbits and chickens, they made their own wine and rakia (a local fruit brandy). It was a lot of work but it had a lot of meaning for them, so they liked it.

Unfortunately, about 16 months ago my dad started bleeding from the opening in his throat (through which he was breathing after his larynx was removed). At first the bleeding was light but we knew it wasn’t normal, so he went to the oncology hospital in Veliko Turnovo (my hometown). The doctors acted very strange – they told him he needed to seek an ear, nose and throat (ENT) specialist but that the ENT clinic in town had closed. They provided no further advice or referrals.

My parents decided to come to Sofia and talk to the doctor who had removed his larynx back in 2009. That doctor was now in his 80s and when they went to see him, he seemed unwell but saw my dad for less than five minutes. My dad told him about the bleeding. He said that it happens sometimes but that he should keep his trachea moisturized and that would help. That didn’t sound like serious advice to me but I am not a doctor. We all wanted to believe that something simple like moisturizing would solve the problem, so they went home and moisturized but it didn’t stop the bleeding. Back to Sofia they came. I arranged for them to see another ENT doctor. He said pretty much the same thing and suggested applying pure cold-pressed olive oil to keep the opening to the trachea moisturized. I was very puzzled. They went back home again and started applying the olive oil, as strange as it seemed. It didn’t help. They consulted with another doctor in a nearby town. More or less the same thing happened which lead to no improvement. During the summer, he had a periodic check-up at the oncology hospital in Veliko Turnovo. They did a battery of tests and an x-ray but said everything was normal.

Except he wasn’t feeling well. He was still bleeding, felt very tired all the time, lost appetite, started losing weight and also started having chest pains. In October, they talked to an oncologist they knew in another city a couple of hours from where they live. He agreed to do a complete check-up to determine what was wrong. They admitted him in the hospital there, did a chest x-ray, blood tests and a CT scan. He was severely anemic and had to have a blood transfusion. The doctors said that there was a dark spot in his right lung they were concerned about. They did a biopsy but it came back negative (no cancer cells). They gave him medication to stop the bleeding but it didn’t help. They did another biopsy and another (each taking about 10 days to get results) but those also came back negative. We thought that meant no cancer and were somewhat relieved but the doctors were still concerned about the dark spot in his lung and the fact that the bleeding, the pain, the fatigue and the chest pain were persisting. I talked to the doctors asking if there’s anything else that could be done. Eventually they agreed to do a PET scan, which would unequivocally confirm if my dad had cancer. It was early December. There was a waiting list for the PET scan but he got an appointment for the first week of January. In the first week of January, they called us to tell us the PET scanner was out of order, they’d call us when it’s working again. We wasted another week but did the PET scan the following week. At that point the doctors there told my dad there was nothing more they could do.  They sent him to a specialized lung hospital in Sofia – if anyone could help him, it was them.

So they came to Sofia again. I took them to the lung hospital to talk to the head doctor there. We waited around for hours and when we finally got to talk to him, we were scolded like children because we didn’t have x-rays, CT scans or the PET scan. When my parents were leaving from the previous hospital, I had asked them to request everything, so that the doctors at the lung hospital in Sofia could pick up where the previous doctors had left off, which they had done. The doctors at the previous hospital had provided written summaries of what they had found but not the actual x-rays, CT-scan or PET scan. The head of the lung hospital said he couldn’t do anything until we brought him those things. So we wasted another week collecting everything. Meanwhile, my dad’s health was continuing to deteriorate. We got the PET scan results and I am not a doctor but even I could see from the summary that it was really bad – there was a very large tumor (about 10 cm in diameter) in his right lung. The tumor had spread to the spine and was affecting several vertebrae, several ribs and had spread to the lymph nodes. It was very advanced – stage 4. My mom and I were in shock but we gathered all the information and the actual scans and took them to the doctors at the lung hospital. They agreed that the situation was indeed very serious but said they needed a biopsy with cells from the cancer in order to figure out if there was a cure and if so, what may be the best course of action. They admitted him and did another biopsy which also came back negative. By this point we were all extremely frustrated and disheartened. My dad had lost about 40 lbs in the last four months, the bleeding was continuing and he was in a lot of pain, which we now knew was from the tumor eating away at his spine. I went to more consultations with doctors. They were concerned that the tumor may reach his spinal cord and cause the affected vertebrae to collapse, leading to paralysis. We were horrified to hear that. The lung hospital doctors decided that the way they had been getting his biopsies (through the opening in his trachea), though the least invasive, was not working and they needed to do something else.  They said he needed to go to another hospital for a biopsy through his back.

He got admitted again in the other hospital, had another blood transfusion, another biopsy (this was #5) and we had to wait another 10 work days for the results. Those 10 days were interminable but we waited because what choice did we have? When the results came back they knew what type of cancer it was (squamous cell) but he was in really bad shape – he could barely stand or sit, still bleeding and in excruciating pain. I met with an oncologist at the hospital to talk about options. He said that unfortunately, the tumor was very large, aggressive and too advanced. There was no cure, he said. We were afraid that was the case but hearing it was devastating. Chemotherapy was out of the question in my dad’s compromised state but he recommended radiation as he thought that may help with the bleeding and the pain, and perhaps stop the tumor’s growth. I immediately met with a radiologist (who had administered his radiation the last time he had cancer). She agreed to have my dad come in the next day (Friday) for radiation prep and start radiation the following Monday. We went the next day, they prepared a mask for the radiation procedures, we filled out the check-in paperwork and everything was ready for him to be admitted again for radiation on Monday. Saturday night, my dad fell while going to the bathroom. By Monday morning he had lost control of his legs/feet and couldn’t walk.

We called the radiologist and told her what had happened. She said that they couldn’t administer radiation under the circumstances but urged me to talk to a neurosurgeon to see if he could perform a surgery to stabilize my dad’s spine with pins and screws to stave off paralysis. I got an appointment with the neurosurgeon the same day but needed to take my dad there and he couldn’t walk. We have a staircase in front of the house and there was no way to bring my dad down the stairs. Paul was out of town, so he couldn’t help me. I talked to the Health Unit at the embassy and they let me borrow a wheelchair. My mom and I managed to put my dad into the wheelchair and then wheeled him down the hill in our yard before helping him into the car. We met with the neurosurgeon. He said he needed an MRI in order to determine whether he could perform the surgery. We had a bunch of other scans and stuff but not an MRI. He insisted only an MRI would do. Could we get one at the same hospital? Yes, but there was a two-day wait. We had already waited too long and did not want to wait. He arranged for us to go to a clinic across town to get an MRI immediately, so we loaded my dad in the wheelchair and the car and off we went to get the MRI. The neurosurgeon said to come back and show him the MRI. By the time we got back it was after 5 pm but he waited. He saw the MRI but said that the tumor was too advanced, in order for a surgery to help in any way and that it was likely to cause more harm than good. He advised against it.

To say I was said, disappointed and angry would be the understatement of the century. My mom and I were both going nuts with worry and distress. Because this was it - we had run out of options. There was nothing else we could do to help my dad. Except get strong pain meds, which I got the next day after being yelled at by a doctor and breaking down and crying at the hospital. It was awful. It is still awful and will probably continue to be for a while. My parents have decided they want to go home, so tomorrow I will take them. My dad wants to die at his house, which I understand but I feel terrible. Because I am a problem solver. I help people. And I can’t help my dad. It’s the worst feeling.

Also, the illness is starting to affect my dad mentally. He is often confused and seems to be seeing things and people that are not there. He doesn’t seem to recognize me anymore, which is so incredibly sad. Today is March 1 and I went into his room in the morning to talk to him and give him a Martenitza (a symbol of spring and health Bulgarians exchange on March 1 every year). He let me tie the Martenitza around his wrist but I could tell he didn’t know who I was. His eyes just seemed to say, “Who is this woman?” I didn’t say anything but it broke my heart. My dad deteriorated so quickly that I have a hard time believing what has happened. Part of me thinks that maybe he is in some lala land where there is no cancer or pain and he doesn’t know what’s happening to him. I hope that’s the case because the alternative is just too much to bear.