ONE LAST INSULT FOR 2011

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

TWO MORE BUMPS

Lord, you have given Terry a real roller coaster ride for the past few years: with the disease there was fear, with the initial treatment there was hope, then came the transplant and there was anticipation followed by happiness. The happiness was short lived and then there were cardiac problems, then this, then that. All these highs and lows. Usually the bumps come one at a time but not this time. Three weeks ago Terry was having a surprise 70th birthday and she was doing really well. It was all downhill from there. All of a sudden she started needing a walker, then she started to lose some arm strength and she listed to the right when she walked. Then all of a sudden she needed a wheelchair for anything ambulation outside the house. An MRI of her brain was done last Friday and today we got the news about the two bumps in this lousy road. She has a growth in one of her sinus cavities and another growth on the rear part of her brain (cerebellum). Terry will be seeing an EENT specialist in 2 days and a neuro-surgeon in 3 days. Each will be doing a biopsy. When we don't know yet. Then, depending upon the biopsies, treatment(s) will be started.
It never rains it just seems to pour.
There is always a possibility that these growths are benign so keep the prayers coming in.
Thanks to all.

MORE GOOD NEWS

Terry had 4 medical appointments this past week. On Monday she saw her primary oncologist and he said everything appears to be going well and he discontinued one of her IV chemos. Tuesday was a dental appointment but it still counts as a visit to the doctor. Thursday she saw our primary care physician as she was having some problems with her feet and legs. He assured us that her heart, kidneys, lungs, etc were all working just fine. It appears she is having a reaction to the high weekly dose of steroids. That is now in tow (not toe). Friday she revisited the ENT doc and he wants to wait and watch the growth on her palate. The biopsy was non-cancerous, so why undergo surgery if we can err on the side of caution.
Then we looked at the calendar. Terry has no, none, zip, nada appointments with any kind of doctor for the next two week. That hasn't happened in six months. We often wear "Life is good" T-shirts. It certainly has been for the past few weeks and it looks pretty good for the near future too.
Thanks to all of you for you constant prayers and good wishes.

A GOOD COUPLE OF WEEKS

Since the last posting Terry has finished one full course of her current chemo. We can't tell if it is successful or not until Monday when she has her blood tested.
The past few weeks have been mostly highs:
1-She had a growth on her palette and the biopsy came back as non-cancerous-she has a blocked salivary gland.
2-Her hearing seemed to be waning so off she goes to another specialist. This time an ENT. He noted there was quite a bit of fluid behind her eardrum. He put in a tube, just like the kids get when they have multiple ear infections. Her hearing improved immediately.
3-We went to NYC for a 4 day vacation and stayed in Times Square at the Marriott Marquis. A super great time as we saw 5 musicals and met with our good friends Paul and Lynne for dinner.
It was a terrific time.
4-After getting back from NYC we drove to Buffalo to visit with some long time friends and ex-neighbors Deanne and Roy Sheppard. They have been putting up with our visits for over 35 years. It was a wonderful time spending time with them. It always is.
5-After Buffalo it was off to Rome, NY to spend two nights at Terry's sister's house. Helen and Bill are absolutely fantastic hosts. The first night in Rome, Terry and I attended a reunion of her 8th grade graduating class. WHAT A BLAST! A good time was had by all.
When all is said and done, the past few weeks have been really good.

PLAN B

Terry met with the multiple myeloma specialist yesterday. He gave us quite a bit of hope for the immediate and long term future. He is recommending that she go back to the heavy duty chemo regimen that she had been on prior to her recent hospitalization. She will be on that for 6 weeks after which she will be weaned down or off of most chemo meeds over the period of about 6-8 months. She will have to stay on one or another chemo agents and a steroid, probably forever. If or when her disease starts to rear its ugly head again, then the medications would have to be reintroduced again. He seems to think that Terry may get some longevity doing this way. Let's hope she can.
In the meantime some good news is that he wants her to start her immunizations. She lost all immunity against things like polio, tetanus, diphtheria, etc. when she had her first transplant. Once she is properly immunized and if her health allows it, then we can start our international travels again. The important thing is getting her cancer in tow and we are praying for that daily.
Thanks for all of your support.

ON TO PLAN B

Terry met with the transplant specialist yesterday. His recommendation is not to do another transplant. He feels that Terry's heart might not be able to stand the rigors of another procedure. She has had two serious cardiac events since the first transplant in 12/09. In January 2010, she was diagnosed with congestive heart failure(CHF) and also had a stent put in a blocked artery. She has since recovered completely from that and no longer has CHF. Last month she had a series of cardiac events where her pulse and blood pressure dropped through the floor. That has since been taken care of, but the transplant physician doesn't want to take any chances that there could be something even more serious with her heart should they do a transplant.
So it is on to plan B. Terry will now be going to another set of specialists who will be treating her medically. At this moment in time, we are not sure what that will entail. I'll keep you posted.
I think it is ironic that she is having heart problems. Terry has the most wonderful and giving heart of anyone I know. We have been told that God doesn't close a door unless He opens another one. I hope this new door has a golden heart behind it for my golden girl.
Take care one and all and be thankful for every day.

THE LATEST MONTH IN REVIEW

Last month we were getting ready for a transplant to take place this month. Now things are up in the air. Terry spent two weeks in the hospital after she fainted and had a series of medical misadventures. She wound up with pneumonia, many episodes of bradycardia (very low heart rate), high blood carbon dioxide and sleep apnea. At one time she had an external pacemaker put in. She also was put on a BiPAP machine.
The good news is that the pneumonia is cleared, the bradycardia is gone, the pacemaker is out. She will keep the BiPAP for the foreseeable future. The great news is after two weeks as a guest of the University of Michigan cardiology unit she is home.
However, with these latest medical travails her transplant has been delayed. Her transplant physician wants to see her in a few days, to reevaluate her medical status. There is a possibility that she will not be eligible for a transplant now. If that is the case it will be on to plan B, whatever that is.
I'll let you all know as soon as we know anything.
Take care, love each other and cherish every day.

NEXT TRANSPLANT SCHEDULED

The last two weeks have been extremely hectic and filled with more than the usual number of medical appointments. The good news is that Terry's cancer is in check enough that she is going to have another stem cell transplant. She has been viewed, reviewed, checked and rechecked by her primary care physician, her primary hematologist/oncologist, her oral surgeon, her cardiologist and today by her transplant specialist. She is fighting a terrible cold at this time and needs a biopsy on a growth in her mouth that is probably related to her cancer, but other than that she is ready.
Right now it looks as if July will be the magic month. There is a lot of prep work to do before T-minus 6. FYI, T-minus 6 is the day she goes into the hospital and gets 6 days of chemo before the actual transplant.
This time she will be getting her sister Helen's stem cells. Terry received her own stem cells for the first transplant. Helen has promised that her cells will come out swinging and knock the crap out of any cancer left in Terry's body. I have known Helen for a long time. If she says it, it will happen.
Please keep up the prayers and good thoughts.

2 BONE MARROW BIOPSIES LATER

It took 2 bone marrow biopsies to get the news. The first biopsy done a few weeks ago was inconclusive so Terry had to have another one last week. FYI, this was her 9th biopsy since being diagnosed with multiple myeloma. The news was very good. Terry's primary hematologist/oncologist said the biopsy was as good as it gets. Her new regimen is working! One slight glitch is that she now has a new growth on her palate. She has to have that aspirated and then a pathologist will see what this new thing is all about.
We did contact the University of Michigan transplant center and they want to do a few more tests before anything is finalized. So for the time being everything is status quo. She stays on her current chemo, has an aspiration on her palate, gets some repeat tests and then a decision will be made.
In the meantime Terry is doing well. I am sure that is because of the tons of prayers said for her daily.
God bless you all.

UPDATE ONLY

Not a lot, cancer-wise, happening with Terry. The biggest news is that she had a bone marrow biopsy done two days ago. Normally we would have the results on Friday, but as luck would have it the oncologist is on vacation Friday and Monday. We were hoping for results for Mothers Day, but we'll have to wait. We did talk with Dr. Bloom, her hematology-oncology specialist, about Terry's future options. The possibilities are to do no transplant and continue maintenance therapy, do a stem cell transplant using her own cells and then maintenance therapy or use her sister's stem cells for a transplant and then maintenance therapy. He would opt for the third and then went through the reasons why. We have trusted this physician for the past 2 1/2 years so his opinion means a lot.
I'll update this blog as soon as her bone marrow results are in. In the meantime please know that she is doing well and that your prayers are being answered and still sought.

SOME GOOD NEWS-FINALLY

Terry spent 4 hours with her Oncologist and getting chemo today. The nurse tried 4-5 times before she got a vein that would keep the catheter viable. Sounds like a bad day-well it wasn't! Terry's CT scan came back and the growth in her lung is gone as is the growth in her jaw. In 4 weeks she will have another bone marrow biopsy and that will be more definitive about her current state of cancer. However the oncologist said that the two aforementioned growths were probably the same composition as the cancer in her bone marrow. Our supposition is if the two growths have gone while Terry is taking this new chemo regimen then we are praying that the chemo is having the same effect on her multiple myeloma. The bone marrow biopsy will be the proof of the pudding. Keep your fingers crossed and keep those prayers coming in.
FYI, Terry has had to rely on a cane for the past few months due to her disease. She still has it for security but she can toddle around pretty good without it.
SMALL VICTORIES!!!!

UP TO DATE INFO ABOUT TERRY

A lot has happened in the past few weeks. As I mentioned in the last posting, she has a plasmacytoma in her left cheek and there also appears to be one, maybe more in her lungs. She has finished one cycle of the new chemo and the growth in her cheek has gone way down to near normal. We won't know for certain if the growth in her lung is a plasmacytoma and responsive to the current chemo for 3 weeks. She has another CT scan scheduled at that time and then we will know about her lungs.
The other main problem, at this time, is her hip. Evidently the hard covering of her hip has been breached by her myeloma in two different areas. The scariest breach is near her femur. The oncologist specialist isn't sure that anything can be done at this time to prevent a fracture. Terry has to be very careful when she is toddling around. Hr hips are causing her a lot of discomfort and she needs a cane almost 100% of the time. I will be checking with an orthopedic physician this Friday to see if there is anything that can be done.
So, for the next 3-4 weeks she has to stay on her chemo agents, get another CT scan and then be seen by the oncologist again. Keep your fingers and toes crossed and keep those prayers coming in.

Another battle begins

Terry started her new regimen a few days ago. They have added cytoxan to her velade and high dose i.v. dexamethasone. She will be on this for one cycle and then revlimid will be added. The velcade causes her to get some severe bone pain, especially in her sternum and right hip. So she is on two narcotics to help with the pain. She will suffer a lot of pain before taking either of the narcotics. She is keeping up her spirits and always has a positive attitude. She is a lot stronger person that I would be in the same situation.
Her PET scan came back and as we expected her myeloma is fairly diffuse among her long bones and a few other bones that produce marrow. She also has a few soft tissue problems that we are told will go away with the myeloma when the therapy works. Now we have to HOPE (our theme) that the new chemo cocktail does what we want.
This is another battle to fight in the war against multiple myeloma. Please keep your prayers coming for Terry. God bless you all.

HOPE springs eternal

Frank Sinatra once sang the lyrics, "You gotta have HOPE, all you really need is HOPE." Well, we got some HOPE with the myeloma specialist. He ran a battery of tests and in a week Terry will have her first PET scan. I was thinking I could just wave our cat Lacey over her and that would suffice. That wouldn't get any information and we would tick off the cat.
After she has the PET scan Terry will go back on 3 meds, Velcade, dexamethasone and Cytoxan. She will be on that regimen for 3 weeks and then Revlimid will be added at a higher dose than she has taken in the past. The physician said that Terry will then be on this group of 4 medications for 2-3 more cycles before another bone marrow biopsy is done. Each cycle is 3 weeks in length. He gave us a lot of HOPE as he has had good successes with others like Terry who have relapsed after a transplant and then became refractory to whatever they were taking. He doesn't think she needs any trial protocol or investigational drugs at this point. So HOPE is where we are. I know that with our prayers and yours this course of medical treatment will fill the bill.
God bless you all and stay safe.

A huge pothole

The last update I mentioned that Terry's transplant had failed and she would be getting a new one, this time using her sister's stem cells. Things are not going according to plan. In order to get Terry ready for another transplant she has been on a heavy duty chemo agent called Velcade along with some high dose dexamethasone. She had a bone marrow biopsy last week and it shows that the treatment isn't doing anything. Until she can get the cancer cells down to an acceptable level in her marrow, she is not a candidate for any kind of transplant. This coming Friday Terry has an appointment with a renowned myeloma specialist at the Univ. of Michigan. Hopefully he will have something in his bag of tricks that will work; maybe an experimental new drug or a trial protocol? In the meantime please keep praying for her.
God bless you all.