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Dad has undiagnosed metastatic disease likely luncg cancer, declining quickly

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

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!"
;)

lekkerone
Posts: 199
Joined: Jan 2011

You are having quite a time and I am so glad you have help and aren't doing this alone. You are obviously a devoted daughter. The needle biopsy isn't too bad and takes about half an hour. I wish you and your family all the luck in the world. Let's hope those brains mets can be taken care of so you don't have to worry about him falling or getting out during the night.
Please keep us posted. You are not alone as we are all here for you. Diane

lekkerone
Posts: 199
Joined: Jan 2011

You are having quite a time and I am so glad you have help and aren't doing this alone. You are obviously a devoted daughter. The needle biopsy isn't too bad and takes about half an hour. I wish you and your family all the luck in the world. Let's hope those brains mets can be taken care of so you don't have to worry about him falling or getting out during the night.
Please keep us posted. You are not alone as we are all here for you. Diane

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

This has been a trying week. So far, he has been able to walk a little better, but his energy and steadiness comes and goes throughout the day. Naps, snacks, and attention are all a must! I have had a few friends help out a little by visiting, etc, and bringing over food, but we don't not have any regular help at the moment. Would be nice to have a couple mornings or afternoons to do taxes or whatever. (I'm filing an extension for now. I have my own business and was so behind on that housekeeping, I was supposed to do all this during March! ha!)

I know we end up frustrated sometimes, and we try to focus that on the disease and not each other. It's hard watching him forget how to do things, like one shoe is perfect and the second has the back folded under his heel. or trying to shave with the cover on the razor, then when i took it off he totally cut up his chin. and he can't remember how to find friends' numbers on his cell phone. He crashed the scooter buggy into the checkout counter at the grocery store yesterday and banged his knee. Oh and my gosh if I could post photos here I would share the one of the toilet he broke. We all laugh about it - he has a great sense of humor, at least! Maybe I can make it my profile pic.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Wow, after seeing your picture I'm glad the toilet took the beating and not your dad.

Hoping things are improving daily for him and for your family.

My best,
Glenna

grannylove
Posts: 183
Joined: Apr 2011

Hello Dearfoam, Sorry to hear about your Dad! You have had quite a month or so. I know your dilemma as far as waiting for doc, path, tests etc. Very frustrating. I am glad that the friends you have are a blessing and were able to assist you somewhat. That alone had to help ease some of the anxiety. God bless our friends! Sure hope the radiation shows some improvement for your Dad soon. Needle biopsy is relatively painless but I did have an issue with a collapsed lung and had to stay overnight in the hosp. The doc who did it,( not my regular thoracic surgeon), talked, walked and acted like he was on speed. He was not a very gentle doc. Hope you have a better one. Sounds like you have a very supportive hubby and family also which is awesome. My thoughts and prayers are with you for strength and a quick recovery for your Dad.

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

Steroid has been reduced to 6 mg daily instead of 8. He is walking better (though assisted by walker) and radiation has been going on over a week now. Also not having middle of the night accidents, so that's a plus for everyone.

Biopsy is this Thursday. Hoping and praying for accurate sample. Whatever it is, it's advanced. I am trying to get in touch with nutritionists in addition to the Onc team about all our options for treatment beyond the whole brain radiation. So far dad has been without ill effects from Dexamethasone and WBR. I am not sure chemo will be advised, but if it is, I know it will not be gentle. Want to attack this stuff from every angle.

He is getting cards and emails everyday. Spirits are high.

I'm hoping for some me time tonight after hubby gets home from work. Hubby is doing an awesome job.

Did I mention I "healed" my dad's 16yo dog? The poor thing was so arthritic and bloated from poor diet (ahem, eating same food as dad), but now he is running around like a 5yo dog thanks to a proper kibble and a little arthritis pill every couple of days. Much faster than dad for sure!!!

medi_2's picture
medi_2
Posts: 510
Joined: Aug 2009

For gosh sakes, keep that man away from toilets!!! ;)
Medi

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

Just wanted to wish you and your dad all the best. I hope the biopsy went smoothly. Also, kudos to you for taking such good care of your dad's dog, in addition to your dad. You sound like a very strong person, with a great husband, and I'm glad your dad has you in his life.

Karen

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

Yes, the biopsy went smoothly with no complications, though the setting of the hospital and all did give him a dose of anxiety and worry. He's got such high spirits. We should get a report early next week, possibly Monday.

We had an appointment with a Dr in the Geriatric and Palliative care office already (set up for today over 2 weeks ago - we thought we would've had pathology by now), but she was gently blunt in asking my dad if he understood what metastatic cancer was, and they would at best keep his symptoms under control for as long as possible but wouldn't be able to get rid of this cancer. Of course she didn't say anything like he was about to die, but that cancer like this isn't curable. He told her he understood, but he was not a quitter and is determined to do all he can to keep on keepin' on. Dr also did say they could help us get home hospice etc. so to call her when we were at that point.

We had some help today with a of his friend taking him to lunch, then a cousin came to visit and take him to radiation. Brad was off for Good Friday so we got to ride around a bit and have a nice afternoon.

My mom (dad's ex from 27 years ago) invited us all for Easter. She has a handicapped accessible house and so I am looking forward to seeing how it all goes. It's a 4 hour drive but think all should be OK. Leaving in the morning.

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

It became apparent on the way home that dad's pre-biopsy short breath had gotten worse, and he looked super worn out. he normally was winded when tired, but now he was not finishing sentences without pausing a few times each. he had no fever or signs of infection since the needle biopsy (last Thursday 4/21), no pain to speak of, and heart rate seemed OK. mentally normal, not turning blue. I called the hospital paging service and the Onc on call said to take him for a chest x-ray to rule out collapsed lung. Well good thing, because the right lung was almost completely collapsed. They were amazed this wasn't painful to him, but then i had to remind all of us he didn't realize he was short of breath, either. His symptoms are not registering to him, so it is hard to stay on top of this.

He had a chest tube inserted around midnight and then was transferred to the main hospital's Pulmonary Stepdown Unit, kind of like Pulmonary ICU. He has done well today. However, the pathology came back inconclusive on the sample taken last week, so this whole collapsed lung was for naught. New biopsy scheduled for tomorrow (4/26)! Its an exploratory CT assisted bronchoscopy done like a vascular technique. Not the usually Brochoscopy they say. Wish they would've done this last week instead of the needle. Oh well.

Chest tube will remain until they are certain the biopsy yields a useful sample, so dad is bound to be in hospital at least through Wednesday or later. Hope to steer clear of any infections. Will probably need to call the Palliative Care office back about getting social worker to set up home health when he is released.

At any rate, I am glad the lung waited until after he had a good fun weekend before it went wonky. I knew we'd be in for a crappy week either way, since biopsy results won't be pretty (if we ever get them).

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

Biopsy came back positive for melanoma that has spread to the lungs and brain. will meet with oncology team Saturday morning to get staging and other info.

I'll move this to the Melanoma board.

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

Biopsy came back positive for melanoma that has spread to the lungs and brain. will meet with oncology team Saturday morning to get staging and other info.

I'll move this to the Melanoma board.

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