Terry had radiation to her brain and for the first time to her shoulder. That all went okay except for the pain she endured by laying flat for 30 minutes. From now on it will be Vicodan to the rescue whenever she is scheduled for radiation longer than 10-15 minutes.
The final insult of 2011 came when the Radiation Oncologist was worried about a few symptoms Terry was showing. To be safe he sent her to the Emergency Room to have some tests run. He was afraid she might need a transfusion or admission to the hospital. She spent a total of 1 hour at radiation and 3 hours at the ER. The good news is that her tests were all normal and she was sent home. She was beat after the long day.
A friend of ours, Doug Morrow, sent us an adage yesterday, "Don't ask God for anything until you have thanked Him for 20 things." Terry and I have been married for over 17,000 days. Dear Lord thank you for each and every one of those days. I only ask for one thing. That Terry is pain free and has a much better life in 2012 than she has had for the past 3 years with multiple myeloma. Please God, please.
12/31/11
12/30/11
GOOD NEWS TODAY
Today started with some good news from Karen and Nissa-they are extending their stay in Michigan to help Terry and me. They are terrific and have helped beyond belief.
Then we went to the Radiation Oncologist and he told us that the main tumor in Terry's brain is gone. Two smaller tumors on the brian have diminished as have the tumors on her palate and in her sinus cavity. Thank you Lord!
This evening a hospital bed has been delivered with a hydraulic lift. That is going to make life a lot easier for Terry as she is completely bed ridden now.
It has been a miraculous day. I believe that the thousands of prayers being said for Terry are being answered. Strength in numbers.
God bless you all.
Then we went to the Radiation Oncologist and he told us that the main tumor in Terry's brain is gone. Two smaller tumors on the brian have diminished as have the tumors on her palate and in her sinus cavity. Thank you Lord!
This evening a hospital bed has been delivered with a hydraulic lift. That is going to make life a lot easier for Terry as she is completely bed ridden now.
It has been a miraculous day. I believe that the thousands of prayers being said for Terry are being answered. Strength in numbers.
God bless you all.
12/29/11
TERRY IS HOME
"Free at last, thank God we are free at last". We broke out of ECMC (the hospital in Buffalo). After what seemed like an interminable delay we escaped via an air ambulance and successfully made it back home. Greeting Terry were Karen, Jim, Nissa and of course Lacey(cat). Nissa had made a huge pot of chicken noodle soup and it hit the spot for these wayward travelers. Later in the evening a delicious Polish dinner was shared, including some home made, mouth-watering pierogies from Terry's sister Helen. Funny how Terry had no complaints about the food.
Now the fun begins. We have a ton of logistics and healing to get done. Come hook or by crook, Terry will start her much needed radiation therapy again on Thursday. A home care agency will be visiting and setting up PT and OT on Thursday and a neighbor is building a wheelchair ramp. We are looking forward to Terry getting treatment and getting better. Maybe we are on the right track now. I'll be glad when 2011 is done.
Now the fun begins. We have a ton of logistics and healing to get done. Come hook or by crook, Terry will start her much needed radiation therapy again on Thursday. A home care agency will be visiting and setting up PT and OT on Thursday and a neighbor is building a wheelchair ramp. We are looking forward to Terry getting treatment and getting better. Maybe we are on the right track now. I'll be glad when 2011 is done.
12/27/11
DAY 3 POST-OP A DAY OF INFAMY
The day started out pretty good. Terry slept well and things seemed to be progressing for a smooth transition to the Rehab unit on Wednesday. Terry even got up and took 3 steps, although she was still pretty worn out from all of the excitement on Monday. I won't go into the food as all 3 meals were the usual dregs, sop and gruel.
At 5 PM the day started to crash. I received a call from the Rehab unit that they would not be accepting Terry as a patient. It appears that under Medicare SOPs, if she was admitted then the Home would receive a fixed reimbursement. In turn the Rehab unit would be liable for all medical costs that Terry carries. That means they would have to pay for Terry's radiation treatment which is more expensive than the entire Rehab stay. They would lose a lot of money by admitting her. I was told that she could not be admitted to any Rehab unit. Also, because of Medicare rules she cannot be admitted to a hospital. To be admitted to a hospital requires that she is able to do 30 minutes of continuous PT a day. I was thrilled when she took 3 steps today. 30 minutes is out of the question.
I spoke with her oncologist and she has to have the radiation as that is the only thing working against her cancer at this time.
Hopefully tomorrow will bring some sort of solution. Tonight I will pray to God for guidance, but I might yell at Him in frustration.
At 5 PM the day started to crash. I received a call from the Rehab unit that they would not be accepting Terry as a patient. It appears that under Medicare SOPs, if she was admitted then the Home would receive a fixed reimbursement. In turn the Rehab unit would be liable for all medical costs that Terry carries. That means they would have to pay for Terry's radiation treatment which is more expensive than the entire Rehab stay. They would lose a lot of money by admitting her. I was told that she could not be admitted to any Rehab unit. Also, because of Medicare rules she cannot be admitted to a hospital. To be admitted to a hospital requires that she is able to do 30 minutes of continuous PT a day. I was thrilled when she took 3 steps today. 30 minutes is out of the question.
I spoke with her oncologist and she has to have the radiation as that is the only thing working against her cancer at this time.
Hopefully tomorrow will bring some sort of solution. Tonight I will pray to God for guidance, but I might yell at Him in frustration.
12/26/11
DAY 2 POST-OP
Today was a day of surprises and good news. Terry received 2 units of blood last night and her hemoglobin came up a bit but she has to receive two more units tonight. Evidently she lost a fair amount of blood during surgery. Those orthopedic surgeons are not known for their finesse.
At 10 AM the physical and occupational therapists came by and got Terry up and into a chair. She stood on her recently operated leg and bore weight. At 1 PM a wonderful surprise, Terry's sister Helen and her husband Bill drove in from Rome, NY to see Terry and they brought Terry's Mom. The tears of happiness were flowing. Terry's Mom is in a wheelchair and Terry being chair-bound made it difficult for them to hug and kiss-but they did it. An hour later Karen and Nissa arrived totally unexpected as they drove in from Nashville. More tears-more happiness.
Later I received a call from a Rehab facility in Livonia that they will take Terry for admission and she will probably be there a month or so before she can come home. Tomorrow we will find out when we can schedule an air ambulance and when we can get her out of Buffalo.
The only bad news of the day, is that the food is still insufferable. Thank you all for your thoughts and prayers.
At 10 AM the physical and occupational therapists came by and got Terry up and into a chair. She stood on her recently operated leg and bore weight. At 1 PM a wonderful surprise, Terry's sister Helen and her husband Bill drove in from Rome, NY to see Terry and they brought Terry's Mom. The tears of happiness were flowing. Terry's Mom is in a wheelchair and Terry being chair-bound made it difficult for them to hug and kiss-but they did it. An hour later Karen and Nissa arrived totally unexpected as they drove in from Nashville. More tears-more happiness.
Later I received a call from a Rehab facility in Livonia that they will take Terry for admission and she will probably be there a month or so before she can come home. Tomorrow we will find out when we can schedule an air ambulance and when we can get her out of Buffalo.
The only bad news of the day, is that the food is still insufferable. Thank you all for your thoughts and prayers.
DAY 1 POST-OP
I think I prayed for the wrong thing. I ask God to give Terry a break. I didn't think He would be so literal.
FYI, Terry is doing as well as can be expected after her surgery. She is almost pain free and she spent most of Christmas day sleeping. Her diet has gone from clear liquids to a regular one, although the food in this hospital could be the poster child for bad institutional cooking. They served her goulash and carrots for dinner, after two fork-fulls she opted for the safety net of jell-o and pudding. Her vitals and lab work were all normal with one exception. Her hemoglobin was too low due to blood loss during surgery. She is scheduled for a transfusion. I hope it doesn't have to go from the blood bank via the kitchen before she gets it.
Monday the hospital will get back to normal, she is to have a physical therapy evaluation. I hope to speak to the discharge planner and a social worker and then get her transferred to a Michigan re-hab unit. The physician in charge of her case said that Terry will need to be an inpatient for a few weeks of physical therapy rehab. My prayer today is to get that all co-ordinated so I can get her to Michigan asap.
I hope that your CHRISTmas day was wonderful.
FYI, Terry is doing as well as can be expected after her surgery. She is almost pain free and she spent most of Christmas day sleeping. Her diet has gone from clear liquids to a regular one, although the food in this hospital could be the poster child for bad institutional cooking. They served her goulash and carrots for dinner, after two fork-fulls she opted for the safety net of jell-o and pudding. Her vitals and lab work were all normal with one exception. Her hemoglobin was too low due to blood loss during surgery. She is scheduled for a transfusion. I hope it doesn't have to go from the blood bank via the kitchen before she gets it.
Monday the hospital will get back to normal, she is to have a physical therapy evaluation. I hope to speak to the discharge planner and a social worker and then get her transferred to a Michigan re-hab unit. The physician in charge of her case said that Terry will need to be an inpatient for a few weeks of physical therapy rehab. My prayer today is to get that all co-ordinated so I can get her to Michigan asap.
I hope that your CHRISTmas day was wonderful.
12/24/11
IF IT WEREN'T FOR BAD LUCK TERRY WOULD HAVE NO LUCK AT ALL
Bad luck has struck again and it is in the form of her multiple myeloma. On Friday evening she was trying to get down a few stairs with the help of two people. Her left leg collapsed and she has a pathological fracture of her femur. That means the damned myeloma weakened her bone structure enough that it just couldn't take the stress of walking and it fractured.
It is now Saturday afternoon and she is lying in bed, recently post-op with a metal rod in her femur. We don't know anything more than the operation was a success from the orthopedist's viewpoint. By the way we are in Buffalo after spending a wonderful evening with friends. This situation means another CHRISTmas in a hospital for Terry, Jim and I are staying at a local motel and any and all plans are kaput. The hell with plans Lord, just give Terry a chance.
It is now Saturday afternoon and she is lying in bed, recently post-op with a metal rod in her femur. We don't know anything more than the operation was a success from the orthopedist's viewpoint. By the way we are in Buffalo after spending a wonderful evening with friends. This situation means another CHRISTmas in a hospital for Terry, Jim and I are staying at a local motel and any and all plans are kaput. The hell with plans Lord, just give Terry a chance.
12/21/11
WEEK 1 RADIATION
This week has gone by fairly quickly. Terry has received 5 radiation treatments without any noticeable adverse effects. On the plus side, she has gained a little dexterity in her right hand and her nasal biopsy site is hemorrhaging much less. The Radiation Oncologist told us those are good signs that the treatments probably are working. He has given us hope (there is that word again) that things should be even better when we see him next week. Baby steps for now, but they are in the right direction.
I have started contacting specialists throughout the US to get their opinion, as what Terry has now is quite rare. I have always known she was a woman beyond compare. She doesn't need this rarer sequela of a rare disease to prove it.
We wish you all a happy and holy CHRISTmas.
I have started contacting specialists throughout the US to get their opinion, as what Terry has now is quite rare. I have always known she was a woman beyond compare. She doesn't need this rarer sequela of a rare disease to prove it.
We wish you all a happy and holy CHRISTmas.
12/16/11
BIOPSY RESULTS
It isn't easy saying that biopsy results showing cancer is a good thing, but in this case it is what we hoped for. On Monday Terry had a biopsy done on two growths: one in her palate, another in a nasal sinus cavity. The results are in and they are both cancer. The good news is that they are the same cancer type that she has in her bone marrow and in her brain. That means that the current course of therapy will stay the course. Many cancer patients get a secondary type of cancer and we are grateful that didn't happen to Terry.
God bless you all.
God bless you all.
12/15/11
A BIT OF GOOD NEWS TODAY
Short and sweet. Terry's MRI of the spine shows no cancer in the spine. She does have cancer in her brain and that is being treated. She has had 2 treatments already.
Keep up the prayers, I think they worked last night and moved the needle a little. God bless you all.
Keep up the prayers, I think they worked last night and moved the needle a little. God bless you all.
2 YEARS LATER AND IT AIN'T GOOD
Two years ago today Terry was admitted to the hospital for high dose chemo and to get her stem cell transplant on 12/16/09. Things were going along as planned! Looking back over the past 24 months not everything went "according to Hoyle" and now we're back with more problems.
I guess you could call this the week from hell.
Monday started with two biopsies, one from her sinus cavity and another from a growth on her palate. Those went fairly smoothly and we are waiting for her biopsy report. However we were told that she could ooze blood from her nostril for up to 2 weeks.
Tuesday was a shocker, Terry saw her Oncologist and he told us that her cancer has crossed into the lining of her brain and possibly her spinal cord. He stopped all chemo, made a very quick appointment with Radiation Oncology and informed us that radiation is now the treatment of choice to be followed by trial medications. It is evident that the chemo drugs she had been taking no longer were effective.
Wednesday was loooooong. 9AM see the Radiation Oncologist. We were there until 11:30 AM. He assured us that radiation was the way to go. Myeloma in the brain is extremely rare, but not unheard of. She will be on radiation every weekday for the next 5 weeks. At 1:30 Terry started her first dose of radiation. At 2:30 we saw the neurosurgeon who agreed with everything that was going on for treatment. The good news is that he will not be doing a biopsy of her brain. He does want to do a spinal tap which has to be scheduled. After the radiation therapy is done, he will want to put a port in her skull in order to be able to test her spinal fluid and to administer future drug therapy She was in his office until 3:45.
5PM it was off to the hospital for another MRI, this time the spine. That visit lasted until 8 PM. What a lousy day! It was long, Terry was beat! And now she has another fight against this relentless and lousy disease.
A couple things you should all know about Terry. She is tough, she is a fighter, she has an unbelievable faith in God, she will get better and she has a huge number of people praying for her. You can never have enough prayers and hope.
I guess you could call this the week from hell.
Monday started with two biopsies, one from her sinus cavity and another from a growth on her palate. Those went fairly smoothly and we are waiting for her biopsy report. However we were told that she could ooze blood from her nostril for up to 2 weeks.
Tuesday was a shocker, Terry saw her Oncologist and he told us that her cancer has crossed into the lining of her brain and possibly her spinal cord. He stopped all chemo, made a very quick appointment with Radiation Oncology and informed us that radiation is now the treatment of choice to be followed by trial medications. It is evident that the chemo drugs she had been taking no longer were effective.
Wednesday was loooooong. 9AM see the Radiation Oncologist. We were there until 11:30 AM. He assured us that radiation was the way to go. Myeloma in the brain is extremely rare, but not unheard of. She will be on radiation every weekday for the next 5 weeks. At 1:30 Terry started her first dose of radiation. At 2:30 we saw the neurosurgeon who agreed with everything that was going on for treatment. The good news is that he will not be doing a biopsy of her brain. He does want to do a spinal tap which has to be scheduled. After the radiation therapy is done, he will want to put a port in her skull in order to be able to test her spinal fluid and to administer future drug therapy She was in his office until 3:45.
5PM it was off to the hospital for another MRI, this time the spine. That visit lasted until 8 PM. What a lousy day! It was long, Terry was beat! And now she has another fight against this relentless and lousy disease.
A couple things you should all know about Terry. She is tough, she is a fighter, she has an unbelievable faith in God, she will get better and she has a huge number of people praying for her. You can never have enough prayers and hope.
12/1/11
WAIT AND SEE
Well she saw the EENT doc yesterday and the Neurosurgeon today. Right now it is sort of a wait until next week mode. The Neurosurgeon wants to repeat the MRI with a special dye that will help define the growth in her brain and help him make a more accurate diagnosis. He said that this growth could be malignant or benign. It is also possible that the tumor has been with her awhile and that it will be sufficient to just wait and watch it. Terry will have that repeat MRI early next week.
The Neuro and EENT guys are going to confer tonight, but it looks as if their consensus will be to biopsy the growth in Terry's sinus cavity as that is easily accessible and may give a clue as to what is going on in her brain. Don't know when that will happen.
Keeps your fingers crossed and the prayers coming.
The Neuro and EENT guys are going to confer tonight, but it looks as if their consensus will be to biopsy the growth in Terry's sinus cavity as that is easily accessible and may give a clue as to what is going on in her brain. Don't know when that will happen.
Keeps your fingers crossed and the prayers coming.
Subscribe to:
Posts (Atom)