Wednesday, December 14, 2016
Curve balls hurt
I honestly do not know how much more I can take.. Life keeps throwing curve balls at me and they keep hitting me. My husband still has cancer of the bladder. Doctor did a biopsy last week on what she said appeared to be cancer spots again. My beautiful granddaughter that is carrying my great grandson is being tested for heart problems. Now my daughter just called and her pap smear shows cervical cancer cells. I am afraid to go to the doctor for myself...
Wednesday, September 28, 2016
IN THE MIDDLE OF THE NIGHT
Motherhood prepares you for many things, One of those things is that cry in the middle of the night, I wet the bed. So up I get to take care of that problem. I hear him saying "I can take care of it." I, of course, ignore that. The very first part of the vows I took said "in sickness and health", I think sickness covers this. Turning the lights I hear the cry I was NOT expecting,"the catheter came out".
Pat has an indwelling catheter held in place with stitches not a balloon like a normal one is. I feel the panic start inside me. I know I have to remain calm. With normal catheters there is really no problem to replace them. You get a cath tray out with sterile gloves and proceed to insert a new one into the stoma (hole cut in his suprapubic area into the bladder). It needs to done pretty quickly as they can close up sometimes as soon as in 10 minutes! I knew that his would not be put back in in less than that time as his has to be sewn in. The closest hospital is 25 minutes away and not in plan. Only way to use it is in life and death situation, this emergency does not cover that. The hospital we have to go to is 45 minutes from home.
I get dressed and then help him get dressed and off we go. He is taken back to a room at once, paperwork to be done later. The hospital was fast and efficient. Of course they did not tell me anything I did not already know, that it would be morning before anything really could be done. I settled in for what I knew would be a long and sleepless night. Pat was given his pain meds so I knew he would sleep somewhat. Hard to really sleep when you have to use a urinal every 15-30 minutes. His bladder holds at best 50 cc's due to damage from the cancer.
Good news is, they did not have to cut a new stoma! Next comes an agonizing few days for him as his body recovers from the trauma of having his catheter yanked out and a new one put in.
Pat has an indwelling catheter held in place with stitches not a balloon like a normal one is. I feel the panic start inside me. I know I have to remain calm. With normal catheters there is really no problem to replace them. You get a cath tray out with sterile gloves and proceed to insert a new one into the stoma (hole cut in his suprapubic area into the bladder). It needs to done pretty quickly as they can close up sometimes as soon as in 10 minutes! I knew that his would not be put back in in less than that time as his has to be sewn in. The closest hospital is 25 minutes away and not in plan. Only way to use it is in life and death situation, this emergency does not cover that. The hospital we have to go to is 45 minutes from home.
I get dressed and then help him get dressed and off we go. He is taken back to a room at once, paperwork to be done later. The hospital was fast and efficient. Of course they did not tell me anything I did not already know, that it would be morning before anything really could be done. I settled in for what I knew would be a long and sleepless night. Pat was given his pain meds so I knew he would sleep somewhat. Hard to really sleep when you have to use a urinal every 15-30 minutes. His bladder holds at best 50 cc's due to damage from the cancer.
Good news is, they did not have to cut a new stoma! Next comes an agonizing few days for him as his body recovers from the trauma of having his catheter yanked out and a new one put in.
Monday, September 26, 2016
leftovers
Yesterday I looked at my leftover pork loin roast and could not decide what to do. Inspired! I sliced it up, layered an 8"x8" dish with the sliced pieces then poured apple cider over it. Not enough to cover all of it, maybe a cup. I then halved gold potatoes( I do not buy white potatoes anymore. I find the gold potatoes have a far better taste than white or red potatoes) and placed them on top to one side of the dish. Next I put frozen kitchen cut flat green beans on the other side. Covered with foil and stuck it in oven for 90 minutes at 325°F. Tender, good, I will make it again.
Tuesday, September 20, 2016
New day 1
September 13. 2016 is when time starts over again. We got the biopsy results today from the cystoscopy. It was positive for low grade non evasive bladder cancer. It was completely removed and treated.
I was so hoping that it would not be. It would have been nice to at least go once without a negative report.
November is CT scan and another cystoscopy and kidney stent change.
I was so hoping that it would not be. It would have been nice to at least go once without a negative report.
November is CT scan and another cystoscopy and kidney stent change.
Friday, September 16, 2016
Cystoscopy
Cystoscopy (say "sis-TAW-skuh-pee") is a test that allows your doctor to look at the inside of your bladder and urethra. It's done using a thin, lighted tube called a cystoscope .
Normally this is a procedure that is done in the office surgical suite. Pat had one done Tuesday at the hospital under general anesthesia. Due to the tiny size of the inside of his bladder the doctor did not feel that he could tolerate it. He also has a very low of tolerance for pain now.
A biopsy was taken. Now the waiting game.
Normally this is a procedure that is done in the office surgical suite. Pat had one done Tuesday at the hospital under general anesthesia. Due to the tiny size of the inside of his bladder the doctor did not feel that he could tolerate it. He also has a very low of tolerance for pain now.
A biopsy was taken. Now the waiting game.
No Peek Chicken
No Peek Chicken
1 box Uncle Ben’s Long Grain Wild Rice (original recipe)
1 can cream of mushroom soup
1 can cream of celery soup
1 can water
(You can add another can of water for moister rice.)
Chicken breasts or tenders
1 can cream of mushroom soup
1 can cream of celery soup
1 can water
(You can add another can of water for moister rice.)
Chicken breasts or tenders
How to make it :
In a greased 9 x 13 pan, mix the box of rice, cans of celery and mushroom soup and
one can of water. I always add the extra can of water because I like moist rice.
Arrange the raw chicken on top of the rice mixture….
Cover and seal with foil……
Bake at 350 degrees for 2 1/2 hours and “Don’t Peek!”
Your house will smell amazing!
one can of water. I always add the extra can of water because I like moist rice.
Arrange the raw chicken on top of the rice mixture….
Cover and seal with foil……
Bake at 350 degrees for 2 1/2 hours and “Don’t Peek!”
Your house will smell amazing!
Sunday, August 28, 2016
But he is cancer free
My husband Pat is in remission! I honestly did not expect it. I hoped it would happen and it did. Stage 4 aggressive muscle invasive bladder cancer.
The last day of chemo and radiation ended with a bang- 18 days stay in the hospital, much of which he does not remember.
He was admitted for colitis during the time while trying to get that under control it was noted that he was in so much pain with bladder spasms. Swelling occurred, then urination stopped. A foley was attempted but that was a complete failure. An indwelling suparpubic catheter was inserted. Kidney stents were changed out in another surgery 2 days later.
He lives when uncontrolled pain, hyperspasmic bladder, a tube in his bladder that goes through his pubic wall, lymphedema in his leg up to his hip, but he is cancer free. He questions why. He is angry.
I am so angry. I want my husband. I am scared. I am watching him waste away. Was the cure worth this? I don't see the fight to live in him anymore. The pain is becoming too much. The pain of seeing this is too much. I want to run away.
But, he is cancer free, was it worth the price?
The last day of chemo and radiation ended with a bang- 18 days stay in the hospital, much of which he does not remember.
He was admitted for colitis during the time while trying to get that under control it was noted that he was in so much pain with bladder spasms. Swelling occurred, then urination stopped. A foley was attempted but that was a complete failure. An indwelling suparpubic catheter was inserted. Kidney stents were changed out in another surgery 2 days later.
He lives when uncontrolled pain, hyperspasmic bladder, a tube in his bladder that goes through his pubic wall, lymphedema in his leg up to his hip, but he is cancer free. He questions why. He is angry.
I am so angry. I want my husband. I am scared. I am watching him waste away. Was the cure worth this? I don't see the fight to live in him anymore. The pain is becoming too much. The pain of seeing this is too much. I want to run away.
But, he is cancer free, was it worth the price?
Monday, February 29, 2016
Dare we hope?
Today's visit with the doctor was a good visit. We are starting Cycle 4 of the chemo and he brought up the word cure. He actually said that with the addition of radiation we are looking at a possible cure instead of just containing the cancer.
A couple of weeks ago we saw a radiation specialist. He said we are going for a cure. Pat cried, I cried.
Things were finally hopeful. Of course it is still one day at a time. THat is curing this cancer. What about recurrence? Typically the type of cancer he has recurs within 2 years in spite of all treatment unless bladder is removed.
I have to make sure that Pat feels hope. He has to fight or it is all for nothing. Funny thing is, I am the one that always spreads hope and he is the one that always sees the dark side. I see the dark side and have to project I am seeing the bright side.
Last week Pat's blood work showed he had a dangerously low platelet count. His white count was low and his blood level was right about needing a transfusion. His levels are better this week but still low. Chemo goes on tomorrow as planned unless there is a dramatic drop tomorrow.
I think I need a vacation.
A couple of weeks ago we saw a radiation specialist. He said we are going for a cure. Pat cried, I cried.
Things were finally hopeful. Of course it is still one day at a time. THat is curing this cancer. What about recurrence? Typically the type of cancer he has recurs within 2 years in spite of all treatment unless bladder is removed.
I have to make sure that Pat feels hope. He has to fight or it is all for nothing. Funny thing is, I am the one that always spreads hope and he is the one that always sees the dark side. I see the dark side and have to project I am seeing the bright side.
Last week Pat's blood work showed he had a dangerously low platelet count. His white count was low and his blood level was right about needing a transfusion. His levels are better this week but still low. Chemo goes on tomorrow as planned unless there is a dramatic drop tomorrow.
I think I need a vacation.
Monday, January 25, 2016
Palliative care
What Is Palliative Care?
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. (https://getpalliativecare.org/whatis/)
That is what they are calling his chemo now. The cancer has spread into his lymph nodes. No surgery is what they are saying. No cure, surgery can kill him. Just die.
So I am looking at quality of life. What can I do to make it better for him, for the time he has left. How long will it be? I don't know. I just do not know anything anymore. I am at a loss at what to do. I want him to live. I need him to live. Am I just wanting to make his life better for him or me? I don't know.
Saturday, January 16, 2016
Quality of life
Oxygen is something everyone needs, we cannot live without it. We breath it in and exhale carbon dioxide. Carbon dioxide level and oxygen level in your blood tells your brain to breath in and exhale. Someone that has COPD has a higher level of carbon dioxide in their blood and they breath faster than normal. They also have decreased lung surface area where gas exchange takes place-oxygen for carbon dioxide. Now if their oxygen level is high they do not breath as fast, if they do not breath as fast they get an even higher level of carbon dioxide. It can be a vicious cycle and the pros and cons of giving a COPD patient oxygen is weighed heavy.
Pat has been on oxygen at night while asleep for a long time. Yesterday we went and they checked his oxygen and decided it would benefit him more to have oxygen when he is doing activities as well as when asleep.
Quality of life is important. I need to make every bit count for him.
Pat has been on oxygen at night while asleep for a long time. Yesterday we went and they checked his oxygen and decided it would benefit him more to have oxygen when he is doing activities as well as when asleep.
Quality of life is important. I need to make every bit count for him.
Tuesday, January 12, 2016
reflections
Yesterday was Pat's 67th birthday. Our granddaughter Brook drove us to IHOP for his birthday breakfast. He wanted pancakes so off we went. Brook ,of course, had chocolate chip pancakes. Pat went through over half a stack of 5 pancakes smothered in syrup, 2 eggs and sausage links. Our friend Christine joined us to help celebrate his day. He enjoyed himself and ate fairly good.
I know I am repeating myself about how he ate. Thing is, he has lost weight. That worries me. He cannot continue losing weight like he is and fight the cancer.
I never thought I would see the day when I would watch him start to shrivel up and become a frail man. He has always been my rock and now I must be his. I am not a rock. I really don't have a clue of how to be one. It was not supposed to be this way.
Ok. The alarm has gone off. Time to get up and get ready for his doctor's appointment. Well I guess part of it I have done already. Time to put on my face for my world to see.
This is chemo rest week. Only thing he is having done is lab work.
I know I am repeating myself about how he ate. Thing is, he has lost weight. That worries me. He cannot continue losing weight like he is and fight the cancer.
I never thought I would see the day when I would watch him start to shrivel up and become a frail man. He has always been my rock and now I must be his. I am not a rock. I really don't have a clue of how to be one. It was not supposed to be this way.
Ok. The alarm has gone off. Time to get up and get ready for his doctor's appointment. Well I guess part of it I have done already. Time to put on my face for my world to see.
This is chemo rest week. Only thing he is having done is lab work.
Tuesday, January 5, 2016
Sunday, January 3, 2016
poopy poop
*WARNING-deals with body functions*
Pat has been dealing with issues with pain. He has always been a strong man, never one to admit when he was hurting. The lymph nodes in his groin and abdomen area are pressing on his veins constricting proper flow. He has PERIPHERAL LYMPHEDEMA caused by bladder cancer that has metastasized to his lymph nodes. The doctors are not grading it until his cancer has been taken care of.
It hurts. Nerves run along side the veins and arteries. It hurts him. In response he is taking pain medicine. This is causing other issues. He has never been a big drinker of liquids. This is causing issues. I think he has finally realized the importance of water!
After a couple days of extra water, grape juice, oatmeal with baby food prunes, he has had movement!
People if you ever have blood in your urine please PLEASE get it checked out. Bladder cancer in early stages is easily CURABLE.
GoFundMe to help with unexpected expenses
Pat has been dealing with issues with pain. He has always been a strong man, never one to admit when he was hurting. The lymph nodes in his groin and abdomen area are pressing on his veins constricting proper flow. He has PERIPHERAL LYMPHEDEMA caused by bladder cancer that has metastasized to his lymph nodes. The doctors are not grading it until his cancer has been taken care of.
It hurts. Nerves run along side the veins and arteries. It hurts him. In response he is taking pain medicine. This is causing other issues. He has never been a big drinker of liquids. This is causing issues. I think he has finally realized the importance of water!
After a couple days of extra water, grape juice, oatmeal with baby food prunes, he has had movement!
People if you ever have blood in your urine please PLEASE get it checked out. Bladder cancer in early stages is easily CURABLE.
GoFundMe to help with unexpected expenses
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