Today I am home. Its 10:30 pm. They are going easy on me by giving me a day off.
I don’t or let me just say I lost track of time.
I went into the hospitol on the 21st. Discharged on the 26th. With 10 more radiation apointments. We did 5 radiation treaments while in the hospitol.. we have 10 more to go.
They had me going 24 hrs a day . Then hard cord steroids . We had to stop the cancer from hitting ad destroying the nerves. They thought I had a stroke. Whole right side was gone. Made no sense to them. Good thing I went through my oncologist he was on top of things. He diverted me to that hospital because they had Radiation cancer treatment. Until the tumor came bach on the ER CT . The ER doctors hole attitude changed along with his deminer . My oncologist also called and had contacted them.
Overall they did a good job in the release / discharge. Its not normal the things that have to be done. Don’t forget we also did a radiation treatment this morning.
So you are discharging me with everyday apointments as an outpatient. I am going to the VA for further treatment plus the other contracted healthcare centers. Through in the holiday and it can compliment everything.
By law they have to give me or provide all the prescription. The steroids and the rendition treatment are causing massive nerve system, well the cancer is and we have to take out the tumors. The big item is the Insulin and everything that goes with it. .
Nobody is going to give you a box of needles. Insulin and everything to monitor and control diabetes. No record of classes. There is no liability there.
Let’s not get that deep with the steroids.
They came back up to my room and ask me if i could pay the pharmacy $418.00 copays. Hahaha . All that needs to be done is for them to call the VA and tell them were returning him and he needs the following meds. I will check i at the ER and they will discharge me with follow up apointments and were done.
Tomorrow , well today cause its now 6:07 am 27 May. . Now thats funny. I will spend the day relaxing. No treatments. But the 28th here we go. Big long day. Build up some strenth. We have a good 16 day fight ahead.
Ok lets talk
This is hard and divesting on the family . They want you here. I get better support at the hospital and can allow them to take control . Here at home not so much. Your talking food, all the therapy ‘s ,meds and keeping track. Vitals, on and on. You have to make a choice. Its all a balancing act. Communication is the key. Respect all options. And most of all don’t be the bully, everyone is invested. They need to be supported just like you. Its not all about you. That is the way I look at it.
I have been in this fight for 9 months. That’s a long time. It will get longer. 11 months and we are blazing a new path.
The estimated life and expectation are there with research. You have to be accurate and it takes time. I researched this in detailed in the beginning. I was in horror and when I asked question to the oncologist they confirmed what I discovered. You will look it all up, just like I did. Then I wanted to know how to destroy it and live past it.
Be greatful for everyday. Not with words , but live it.
Its 7am everyone is sleeping. I am an hour late on all pills. Hehehe. We will let them sleep and adjust what needs to happens. I have learnt years ago how to adapt , improvise and overcome.
Have a great day today. Its a day of celebration. We honor our fallen by celebrating their life’s and who they are.
Wolfhart
Hi friend, it’s a tough road but you walk it with dignity !
The celebration is also in honour of you. Hope you can enjoy your day before the tough road continues
Thinking of you and the fam
Ohhh thank you Britt. I know that when ever I need to . You are there. Thank you for that cause it matters so much.
The road is never tough when you walk with a freind.
Celebration is a good time looking forward. I like that and is the right thing.
And the present is under its way to you and is almost there
Ohhh It kind of slipped my mind. Can’t wait 😊
I think thursday or friday
Its funny how something small , a gesture, can make a person so happy.
👍
Hey buddy! Sounds like a pretty tough road you're paving there right now. You know Brian and I think of you daily, especially when Wolfie's snuggling up to me at night lol Hoping and praying that this treatment is successful!🤗
Yea must be the water. Hehehe
I am thinking of yous everyday. I think of my support and wish you have the same Or better.
I do think of wolfie and brain just sitting there staring. Hahahahahaha. Funny. It puts a smile on me face. Keeps me going.
I. Need to keep the attitude up and as far ahead of this before it strikes. It is so fast growing. If you wait for a plan after it strikes you just gave it 2-3 weeks to get further down the road.
You have to catch it as early as possible every time it pops up.
We made the 90 day goal. Whoop whooop
Hard decisions that no one wants to make, and yes... you are correct in what you said:
Also... yes, the cost of "surviving" is expensive. I am glad that you are getting the help you need, and even more so... YOU feel it is the help you need. As for losing track? I feel you there brother... ALL last year was a carousel of "It's not Neurological... see your Primary care"... "There is nothing wrong...see your Neurologist"... The sheer STRESS of wanting someone...SOMEBODY... to listen is almost as bad, if not worse, than the actual condition. As I said...late night/early morning ER visits... so much pain medication that I should have been unconscious...
Again; another thing you said holds true:
You have to... the world doesn't stop... prayers are continued to be sent your way, from everyone here...
Thank you for letting us know how things are going... no crazy parties for you my friend! Not yet anyway :)
I use the MyhealthVA and everything is in there. I make copies and use them. But then again I don’t have to many problems. Just nurses who think they are doctors and in charge . Hehehe
I want people to see cancer and how it effects life’s It envolves
And don’t be afraid of cancer.
I hope all the treatment goes well today. You have such a good way of looking at this. Take care.
I got the radiation treatment today . And tomorrow will do 3 then back to to 1 a day . Tuesday will be the worst days for the next 2 tuesdays.
thanks for update. stay happy ❤
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hope complete your radiation treatment, then you feel much better.
I got 10 Moore treatments left. That’s 10 days.
Then we get off the steroids.
Restart Immunotherapy
Then set new goals
That will be soon to feel better. 6-9 months Hahaha . it true we have to do this right.
I am sorry you have to suffer so much... I hope everything turns out well for you and your family! Hugs!
Look at all the great people I have met and engaged with.
I have had a great selfless life. I am content and happy. I will also kick the shit out of this cancer and create a treatment path. For others. Well the Kansas cancer center will. They invented this port thats been in my chest for the last 9-10 months.
Be strong man. I believe you are a strong man
We are all strong.
You keep going. I like your heart. You have a strength and an understanding that most search for.
I wish you wisdom
Thank you very much
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