Dad has undiagnosed metastatic disease likely luncg cancer, declining quickly

I flew up to check on my dad 4 weeks ago. He had recently fallen in an icy parking lot(but not told us) and finally went for a head scan after frequent headaches and dizziness, where they discovered 6 brain tumors and 11 lung tumors, plus some enlarged lymph nodes in the groin and abdomen. He was doing out of town contract work living in various areas of northeast PA and nearby NY, from which I had to pull him. The first biopsy attempt at the local hospital was a bust just before the Anesthesiologist came in. Surgeon ordered an ultrasound -- it was not a lymph node in the groin but rather scar tissue. We set up for a referral to my hometown as we needed to leave in 2 days, rather than wait for another biopsy appt. There is a top tier comprehensive cancer center in my city, so we felt this was the logical thing to do.

Dad seemed immediately in denial that this was anything serious, especially after the attempted biopsy. Well, in the meantime I discovered he had nothing other than Medicare Part A (inpatient coverage) and we had a terrible time getting him an appt for a consultation with a Pulmonary Onc for a bronchoscopy biopsy (our Neuro Onc appt was not so hampered). He was eligible for the charity care insurance, so that was a blessing, but they do not cover medical equipment or Rx drugs. His Medicare Part B will not start until July 1 since he had no other coverage. His wife had dropped him off their plan over 2 years ago (and not told him). He should have signed up for Part B within 2 months of being dropped to avoid a lapse of coverage, but there was nothing we could do since it had been so long. Dad "never gets sick" so he really had no idea about all this.

When I arrived, and during the first two weeks, Dad just seemed scared and weak. He was easily fatigued and his vision/coordination was so bad I took the keys away the first night. I went with him to the followups, the next CT scan, the attempted biopsy, then my brother came t help me move dad back to AL, arriving on a Friday. The new Onc team rec'd his records while we were on the road and we scheduled the initial consult with the Neuro Onc, since his main symptoms were neural. The largest tumor is about 2.8 cm deep in the brain while other 5 are closer to one cm.

Neuro referred us to Pulmonary, but getting the appt took over a week due to insurance BS. During that week, dad went from walking unassisted, to a stick, then walker, then wheelchaor, all in 7 days. I had to BEG for a steroid, as he had seemed OK at the consult a few days before! He was stumbling and falling so much that he landed on our toilet one morning and busted it into pieces. I felt so overwhelmed. He started having more noticeable short term memory problems, too. I was finally contacted by a social worker friend (you forget who you know sometimes) and she helped me get some help and direction. I also was blessed by some friends who's family owns a medical supply co. and brought us everything we need since we had no coverage or money for these things and basically had to have them or take dad to ER and try to get him admitted into inpatient. I took 4 days to get the steroid Rx. He also got divorced that week.

So once we got dad into see the Pulmonary Onc and the files were reviewed, he basically said, "I can't do a bronchoscopy because of the more peripheral location of the lung tumors. Will have to get a radiologist to do a CT guided needle biopsy." All that waiting for nothing really pissed me off, as we were planning to see the Radio Onc in a few more days, with no pathology.

Well, Radio Onc basically said what I had been thinking - we need to start brain radiation and get these shrinking pronto, or whatever this is would be likely to take him sooner rather than later. Treatment began yesterday, one day after the consult. And as luck would have it, the only person I know in this field is a Radiation Treatment Technician, and that;s who walked into the office after the doctor left. Talk about a sigh of relief, to know someone who will care as much as humanly possible!

We were also able to finally get a biopsy date for April 21. I know it seems so late, but I am just happy to have one. The overall feeling I get is that this is going to guide treatments to follow the 3 weeks of daily radiation, whether they are palliative or curative treatments. The doctors all agree this could easily be colon, melanoma, or other cancer spread to the lung based on the pattern of the tumors, but they haven't ruled out lung cancer. My dad's mom had breast cancer so it could even be that, which shocked y dad. I plan to buy him a pink "Save the Ta-tas" t shirt if that's the case.

Radiation has been fast and painless. No effects after 2 days, though we do anticipate some flaky skin and hair loss. He is having whole brain treatment due to the # of tumors and the sudden decline of his health.

Dad was already napping a lot 4 weeks ago when I first got involved in his care. He now has barely enough energy to walk 20 feet at a time. He naps much longer and harder now, despite the steroid. He has some trouble with he bladder overnight, and also wakes up disoriented. He has tried to walk out the front door in his underwear and shoes to take his dog out at 5 AM, where he most certainly would have fallen! I put up a baby gate and monitor, as well as bells on his bedroom door to try and catch him before he falls or something worse. Appetite has been good but might have slowed slightly int he past 24 hours. He's a big pot bellied guy (6'1", 255#). We cook for him as well as take him out when he is able to go. He loves food, and I can't imagine what it would be like for him to loose his taste buds from chemo or other treatment.

I have been able to take a leave of absence from my part-time non-profit job, but I have some real physical limitations about caring for my ailing dad if he cannot get up and down, etc. I am doing all the research, with some help and guidance here and there. It takes a lot out of me, and my sweet husband who is also helping a lot. My siblings have been up to visit with their kids and that has been great comfort for my dad. I think our warm weather and the promise of summer peaches will help him along, too.

He tells everyone he is going to fight this - "As much of a pain in the **** as I have been, I plan to continue for years to come!"