Check in time

Hello @reibur1951

I think that Merry, @merpreb, is providing some good feedback on the problems you are experiencing right now. You have been a faithful friend to this family for some time now. It does sound as if the time has come for him to be in a care facility. His illness is certainly causing you both problems with safety. It is important for both of you to be safe.

Not sure about assisted living as i think you have to care to clean up some after your self but have been thinking on nursing home only problem is our area one will not take him to Indy for his appointments. He has to have radiation had evaluation on 20th - goes back tuesday 25th - and assume will start soon after 10 treatments. He is looking much like his dad did in his final months of life so not sure whats fully going on - he does not say much even to dr. I just do not ask for his help its easier for me to do it myself than to keep repeating what I want done or waste my breath and he do nothing. Trying to hang in for while longer AT least I have friend here who is helping doing part of what he should be doing in cleaning up the 5.3A or I would of never made it at all this far in the clean-up stage - its looks almost 100 percent different and still ways to go. Been unloading storage shed dropping things off at house bring rest here to sort through - most going into a stack for yard sale/auction been a challenge as do not remember what all I packed up in late summer & fall in 2018 hoping to bet out of here before that winter.

Good morning- You are correct, what was I thinking? Assisted living wouldn't be the place, although some offer graduated help according to the needs of the patient. Does he want to continue treatments at this time or are they to control pain? I can't beleive the amount of work that you have been doing.

Hello @reibur1951

It sounds like you are doing the best you can under the circumstances. If he still wants to work on cancer treatment then he does need transportation to Indianapolis.

I am glad to hear that you have some help getting the acreage cleared. It is important to take care of yourself when you are caring for someone else.

Do his doctors indicate that there has been any metastasis beyond the lung? Are you familiar with palliative care? It is different than hospice care in that he can still continue with treatment, but the patient has specialized help with some of the side effects of treatment, including pain.

Here is a link to some information about palliative care, https://www.mayoclinic.org/departments-centers/general-internal-medicine/palliative-care-minnesota/overviewe,

If you think that this might be something that would be helpful to your friend (and you) and relieve you of some of the burden of caregiving you might talk to his doctor in Indianapolis to see if they can make a referral to Palliative Care.

Dr. has stopped all chemo / immunology as he has exhausted all that's avaiable to date; there are no new clinical studies. He saw radiation dr. Thursday (20th) was concerned for nerves in the area but but only other option would of been surgery radiation dr. opted for radiation - it is starting to show on outside - and he is constantly scratching at the area. Scheduled for the simulation or whatever tomorrow The list provided and not checked what ct-scan dr. has listed

radiation dr.
Metastatic primary lung cancer (also cancer dr.)
Axillary lymphadenopathy (also cancer dr.)
Secondary cancer of skin
Malignant neoplasm of upper lobe, right bronchus or lung
Secondary malignant neoplasm of skin
Localized enlarged lymph nodes

Mediastinal lymphadenopathy
Primary cancer of right upper lobe of lung

gets confusing when all do not use the same terms -

I keep a printed copy of current visits so when traveling back forth in case anything happens or an accident....

Git storage shed about emptied out - 2 maybe 3 loads and the contractor will help put piano back into house that will be final load - may be a bad idea needs work and good cleaning but bought it for my daughter back in the late 1970's early 1980's when she said she wanted to learn and whined to daddy for one 🙁 did not last long but i do play but its been years now as been inaccessible since 1994

I am sorting, taking boxes to house, got all but 3 sets of curtains with rods installed - they are my old curtains from the old house the except for the bathroom - there was not enough for it - the 2 bedrooms were from stuff we got from a thrigft shop they were to long so I measured and just whacked off "hillybilly style for now" they are a very loose open weave so really does not look bad

The living room & master bedroom are a combo from the dinning/living room and bedroom of old house a little short but long enough hem i can let out and use hemming tape on them maybe - the dining/kitcehn area are the cafe curtains from the kitchen & laundry room of old house - heck at my age soon to be 70 I may just make due with them Got small kitchen applainces new - working on it got my bed ordered (no matress yet but looking at them) st cleaning and or stripping down my collectable/antique furniture as it is done its goign to house. EMptied out the china hutch of antique collectabiles and the boxes at house yesterday - it needs to be cleaned down not going to attempt to re-do it

Another round on radiation done and set of scans done on Sept 15 - been several months since the neck was done - Stage IV NSCLC with dermal cutaneous metastases

10/25/2017 showed a fungating right upper lobe mass and a biopsy was done showing poorly-differentiated squamous cell carcinoma both in the mass and in his 4R and 2R lymph nodes. PET/CT showed there was also involvement of the bilateral supraclav and also left axillary and left level V adenopathy

The right supraclavical lymp node has basically disaapeared and not visible any longer on the scans - the main lung tumor has remained stable

left axillary mass (Opened up) it barely or no no longer shows on the scans; left upper back (2 times, Feb 2020 & Sep 2020); L axilla a subcutaneous mass in very inferior L axilla, and one in R axilla that seems deeper and more central - May/Jun 2021

All radiated area oif lymph nodes have remained stable - excepting the new ones which pop up

now there is Multilevel degenerative changes in cervical spine, & . Multilevel moderate spinal canal stenosis. but has increased with each scan seems to be getting worse with each scan

Now there is 3 new - Enlarging or new left levator scapulae ; subclavicular mass abuts the brachial plexus anterior inferior margin mass along the posterior medial aspect of the levator scapulae is also concerning for metastatic disease are consistent with progressive disease

Just trying to hang in as long as i can with my promise still not sure how it will work out. Oct 25 will start year 5 of this saga

Hello @reibur1951

I so appreciate your checking in again with an update. I'm pleased to hear that your move is beginning to come about and you are getting situated in your new home! You must be very happy about that!

I admire your tenacity as you think about October 25, being the five-year mark of helping your friend's son with his cancer treatment. I admire your tenacity and loyalty.

It sounds as if there is some suspicion of metastasis. Is that correct? How is he feeling? Is he in much pain?

The armpit lymph node (left axillary mass) & supraclavical lymph nodes wrer there from day one - they showed up on the PET scan & the surgeon said surgery was out of the question - they started at the on The armpit lymph node (left axillary mass) for biopsy saying it would be less painful than the supraclavical lymph node & if it tested negative they would move up to the supraclavical lymph node but lymph node (left axillary mass) tested positive back in October 2017 which did not really begin to grow larger until sometime in 2019 which he never complained about until to late it really began to grow larger in Dec while he was on his last clinical study and the nurses doing the study began to notice upon radiation it was was baseball and withing few days when radiation treatment assessment & treatment it went from baseball to softball to very large goose egg and opened up & the left upper back on shoulder blade was tested after the Jan 2020 radiation treatment - as it was growing and it tested positive and so it was back to radiation - so the metastasis has been there really since day one - and before - he had had the nagging cough for almost a year and when to primary doctor would never would cough - Finally his Sep appointment I pressed for a chest x-ray - I was thinking bad bronchitis, pneumonia and possibly another acute Myocardial infraction in the works and I did not know how I was goign to hand him myself - as his dad was no making blood and not strong enough to pick him up off floor again & i could not leave his dad here alone so I had 2 of them to deal with in a emergency run of Paul Reever as we had done in 07. If i had not pressed the issue in Sept 2017.....