On December 4th Tom received a phone call from Dr. Worden's office. The tumor board had reviewed his case and determined from the latest MRI that the tumor in C6-C7 had increased and there was fear of spinal decompression. Tom was told to come to the Emergency Department at the U of M immediately to meet the Neurologist to determine if surgery was necessary. Tom tried to talk them into admitting him the following morning but was told they expected him to show up in Ann Arbor that night. Tom called me at work to give me this news. He joked while I tried not to lose it on the phone with him. Afterwards while I was explaining what was going on and trying to still be strong, I had my co-workers around me hugging me & asking what they could do.
Once I got home we packed and headed out for the 2+ hour drive. I drove while Tom took phone calls and explained what was going on. We tried to keep the air light as we made our way across the state. We were triage then escorted to the waiting room where we sat for over 2 1/2 hours. Tom was getting anxious and we did not understand why we had to follow the ER procedure when we already knew Tom was to be admitted. At this point he went to ask the admissions desk these questions and was almost immediately called into a room. I joked with him that he should have done that 2 hours before:) The ED doctors placed a cervical collar on Tom and a steroid injection. After talking with the Neurology department and determining that he did not need emergency surgery we took a breath. Finally 6 hours after arrival, Tom was admitted and we were able to be in a room in the hospital at 3:00 am.
Neither one of us slept much this night as the staff assessed tom every 45 minutes until 6:30 am when a team of doctors from the different departments started making their rounds and assessing Tom's condition. Tom saw the Radiation Oncology & the team of Oncologists. They all assessed Tom and told us the high level plan that was forming. Around noon (13 hours later) the collar finally came off. Tom was ordered to have another MRI from the thoracic level down to the end of his spinal cord. They took him out of the room for 3 hours. I have to admit I took advantage and slept for a little of that, but by the 2nd hour I was getting antsy!
We were told multiple times that we were probably going to be released. About 7 pm the Radiation Oncology team arrived with a plan to begin the SBRT radiation and wanted Tom to have a CT and simulation while he was here so that the radiation could begin. They had him scheduled for 7:00 am on Thursday and then they would finally cut him loose. After another sleepless night & all the scans complete they finally discharged Tom at 11:30 Thursday.
This is a very high level of the two day hospital stay. Tom and I realize that the steps the department took was precautionary and the situation Tom is in is balancing on the fact that for now the vertebra is strong and this can change drastically very quickly. They placed Tom on steroids to help strengthen the bone and helping to stop the tingling Tom experiences in his hands. They are also pushing forward quickly with the radiation treatment plan as it is essential to prevent the tumor from further pushing on his spinal fluid and/or collapsing damaging the nerves and causing paralysis.
Thanks to both our moms for taking turns coming out to watch our children. Also thanks to Tom's dad who came out to cheer Cody and Katie in the sports. I appreciated Tom's cousin for coming out and bringing me dinner to make sure I was eating. So many texted/called/facebooked to inquire how Tom was doing and the support was overwhelming.
Tom's friend and EMT partner posted the following which sums up how Tom has touched people's lives:
Day and night
Through the dark and the light
Racing to cheat death
Trying to postpone that last breath
Stood two men of impeccable skill
Whose thirst for trauma would never fill
A crazy driver who raced just to stop on a dime
The other called Rabbit who got there in the nick of time
Years they spent roaming every street
Sometimes just helping those up who fell from their seat
You see them in parades and out getting ice cream
They will be with us in even in the worst dream
Where ever they are, though the winds may blow
We will always agree, long live the T&A show
Get better Tom.
Saturday, December 8, 2012
Friday, November 30, 2012
Encourage
Well, I have to admit that I thought about skipping the post this month. then I saw that people were checking my blog so I may be doing 2 in a very short period of time. So what has kept me away? Life is twirling fast in the Andrews home and time goes by a blink of the eye. Cody has been busy with his wrestling but the matches haven't begun yet....next week. Katie has had 3 swim meets and she has placed 3rd in overall heats for the Freestyle. She has skimmed seconds off her time and from what I hear that is her goal each heat. So good job Katie :)
This month I went with my sister-in-law and daughter to Chicago. Thank you Diva for showing us Andrews a great time! Katie and I both so enjoyed our trip but we both admitted the big cities are fun to visit. We hit the American Girl Cafe' for lunch and shopped until our legs wore out. Our Diva showed us the popular places to dine and we all laughed so hard during the Blue Man Group performance. The Andrews family also had our Thanksgiving Day tradition. We went to Grandma & Grandpa's house for turkey time and attempted to play a game of scrabble. We ran out of time & that was OK as most of us ended up with the dreaded letters. Vicky and Cody had about 4 I's at one time; that should count for some letter redraw! The next day we headed to our friends home in Ohio. I believe there were about 30 people roaming the "Hursh Hotel" as we call it for a couple of day. With Debbie's fabulous hospitality we left a few pounds heavy and our hearts lighter for having been able to connect with family & friends.
Tom and I also made a trip to Ann Arbor a few days before Thanksgiving. Tom had CT scan of the neck and chest and a MRI. As the MRI was a later addition and the test did not happen until 5:00 pm and we were not able to get the results the next morning. However the CT scan came back stable. I am a little confused as to what "stable" means after this visit. Though the result was stable there is a new spot found on Tom's lower right lung. The spot is so small that it can't be measured. Tom and Dr. Worden also visited the reflex issue Tom experiences at night. They gave Tom another couple of prescriptions to attempt to control this from happening. It was also mentioned that Tom should make an appointment with his ENT in GR so that they can take a look at his Esophagus and determine if they can stretch it or do anything that will help. It is assumed that with all the scar tissue that Tom incurred during his surgery, it is effecting the acid and possibly squeezing tightly his throat. However, I noticed that when they started talking about Traching, the discussion was steered from Tom into other possibilities....can't say that I blame him for that one :)
Tom's case is to go before the Cancer Tumor board. We thought it would initially happen last Tuesday, so I held off posting. However we were called and told that it will be reviewed on the 4th of December.
I received news from my mother that her needle biopsy of the thyroid did not show any cancer or anything suspicious. That is good news indeed. However I received an e-mail from a friend stating that her husband has been diagnosed with cancer & that he had surgery and will begin chemotherapy/radiation very soon. My heart breaks for her as her husband has an aggressive and fast growing cancer. She was there for me in all Tom's stages and I feel so helpless in words/actions of how to be there for her. All I can do is be strong & pray for her and her family. I try to be encouraging as others have done for us during these difficult days.
1 Thessalonians 4:10 "For night and day we pray for on and on for you, asking God to let us see you again, to fill up any little cracks there may yet be in your faith."
This month I went with my sister-in-law and daughter to Chicago. Thank you Diva for showing us Andrews a great time! Katie and I both so enjoyed our trip but we both admitted the big cities are fun to visit. We hit the American Girl Cafe' for lunch and shopped until our legs wore out. Our Diva showed us the popular places to dine and we all laughed so hard during the Blue Man Group performance. The Andrews family also had our Thanksgiving Day tradition. We went to Grandma & Grandpa's house for turkey time and attempted to play a game of scrabble. We ran out of time & that was OK as most of us ended up with the dreaded letters. Vicky and Cody had about 4 I's at one time; that should count for some letter redraw! The next day we headed to our friends home in Ohio. I believe there were about 30 people roaming the "Hursh Hotel" as we call it for a couple of day. With Debbie's fabulous hospitality we left a few pounds heavy and our hearts lighter for having been able to connect with family & friends.
Tom and I also made a trip to Ann Arbor a few days before Thanksgiving. Tom had CT scan of the neck and chest and a MRI. As the MRI was a later addition and the test did not happen until 5:00 pm and we were not able to get the results the next morning. However the CT scan came back stable. I am a little confused as to what "stable" means after this visit. Though the result was stable there is a new spot found on Tom's lower right lung. The spot is so small that it can't be measured. Tom and Dr. Worden also visited the reflex issue Tom experiences at night. They gave Tom another couple of prescriptions to attempt to control this from happening. It was also mentioned that Tom should make an appointment with his ENT in GR so that they can take a look at his Esophagus and determine if they can stretch it or do anything that will help. It is assumed that with all the scar tissue that Tom incurred during his surgery, it is effecting the acid and possibly squeezing tightly his throat. However, I noticed that when they started talking about Traching, the discussion was steered from Tom into other possibilities....can't say that I blame him for that one :)
Tom's case is to go before the Cancer Tumor board. We thought it would initially happen last Tuesday, so I held off posting. However we were called and told that it will be reviewed on the 4th of December.
I received news from my mother that her needle biopsy of the thyroid did not show any cancer or anything suspicious. That is good news indeed. However I received an e-mail from a friend stating that her husband has been diagnosed with cancer & that he had surgery and will begin chemotherapy/radiation very soon. My heart breaks for her as her husband has an aggressive and fast growing cancer. She was there for me in all Tom's stages and I feel so helpless in words/actions of how to be there for her. All I can do is be strong & pray for her and her family. I try to be encouraging as others have done for us during these difficult days.
1 Thessalonians 4:10 "For night and day we pray for on and on for you, asking God to let us see you again, to fill up any little cracks there may yet be in your faith."
Friday, October 26, 2012
Hanging On
Football season has ended. Katie cheered on the 7th and 8th graders, whichever team was playing at home. She enjoyed it very much and considered trying out for the Competitive Cheer. It interferes with swimming, so I think she will have to wait until next year to cheer. Cody survived his first varsity football season. He enjoyed getting out on the field and had some playing time. We heard his name on the speakers and cheered every time. Kyle took a lot a great senior pictures and it has been hard to pick, but I think we have them narrowed down to our few favorites. Kyle and Tom went to play air-soft for a cancer fundraising event and Tom became instantly addicted. We'll have to wait and see if the old man can keep up with his sons :) Cody was not able to join in the air-softing fun as it was the same night as Homecoming, smart boy! He and his girlfriend had a great time and I finally got a picture of Cody smiling.
Tom received his first dose of the injection to strengthen his spine. The first day he said he felt a little sore. Within 24 hours it hit him like a train wreck. He had bone and muscle pain, high fever, etc. I was so glad that most of his side effects lessened within the day. Next month Tom will be taking a dose of Tylenol before getting the infusion so that it will hopefully keep some of the effects at bay.
A couple of weeks ago Tom saw the Radiology Oncologist here in GR. There was some concern about Tom getting radiated again because the area was already been treated back in 2007. Tom's case was brought to the Tumor Board so that his treatment could be discussed. Today we had a follow up appointment to find out the treatment plan for Tom's tumor in his C6-C7 vertebrae. Dr. Buth stated that there has been no significant change in the September scans and no evidence of weakness. The board recommends that they keep watching it. He explained that the spinal cord has resistance to radiation but pushing it too far causes damages similar to a serious injury including the chance of paralysis.
He recommends that Tom have another MRI added to his scan at the U of M so that the tumor can be evaluated for change when he goes in November. If treatment is need he is recommending the type of radiation to use is SBRT (Stereotatic Body Radio Therapy) which wraps around the bone. As Dr. Buth has only done this a few time and does not have the expertise, he would like Tom to be referred to the Henry Ford Hospital where their team would have the experience.
I left feeling frustrated at the bouncing to all the different hospitals and that the treatment is not plowing ahead. Tom reminded me that his cancer is rare and very complicated. He is not a typical case & they are sending him out to "the best" to care for him. I have since e-mail the nurse at the U of M and request the MRI to be scheduled when we are there, and Dr. Buth's recommendation. She is ordering the Spinal MRI and talked this over with Dr. Worden. Tom is again being brought to the Board at U of M once the next scans are complete and read.
This is our life. We have lived a roller coaster for over 5 years. I have to give Tom credit for always staying positive and keeping up the fight. I have said before that if I were in his shoes I'm not so sure I would handle it the same way. Thanks again to my prayer warriors and those who "follow" Tom's progress. We all keep each other going with words of encouragement. To my new UK friends...thanks for your monthly comments, hang in there and never give up hope, it our best line of defense.
Psalms 94:19 "Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer."
Tom received his first dose of the injection to strengthen his spine. The first day he said he felt a little sore. Within 24 hours it hit him like a train wreck. He had bone and muscle pain, high fever, etc. I was so glad that most of his side effects lessened within the day. Next month Tom will be taking a dose of Tylenol before getting the infusion so that it will hopefully keep some of the effects at bay.
A couple of weeks ago Tom saw the Radiology Oncologist here in GR. There was some concern about Tom getting radiated again because the area was already been treated back in 2007. Tom's case was brought to the Tumor Board so that his treatment could be discussed. Today we had a follow up appointment to find out the treatment plan for Tom's tumor in his C6-C7 vertebrae. Dr. Buth stated that there has been no significant change in the September scans and no evidence of weakness. The board recommends that they keep watching it. He explained that the spinal cord has resistance to radiation but pushing it too far causes damages similar to a serious injury including the chance of paralysis.
He recommends that Tom have another MRI added to his scan at the U of M so that the tumor can be evaluated for change when he goes in November. If treatment is need he is recommending the type of radiation to use is SBRT (Stereotatic Body Radio Therapy) which wraps around the bone. As Dr. Buth has only done this a few time and does not have the expertise, he would like Tom to be referred to the Henry Ford Hospital where their team would have the experience.
I left feeling frustrated at the bouncing to all the different hospitals and that the treatment is not plowing ahead. Tom reminded me that his cancer is rare and very complicated. He is not a typical case & they are sending him out to "the best" to care for him. I have since e-mail the nurse at the U of M and request the MRI to be scheduled when we are there, and Dr. Buth's recommendation. She is ordering the Spinal MRI and talked this over with Dr. Worden. Tom is again being brought to the Board at U of M once the next scans are complete and read.
This is our life. We have lived a roller coaster for over 5 years. I have to give Tom credit for always staying positive and keeping up the fight. I have said before that if I were in his shoes I'm not so sure I would handle it the same way. Thanks again to my prayer warriors and those who "follow" Tom's progress. We all keep each other going with words of encouragement. To my new UK friends...thanks for your monthly comments, hang in there and never give up hope, it our best line of defense.
Psalms 94:19 "Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer."
Saturday, September 29, 2012
Tumor Board Treatment Plan
Today is a beautiful sunny fall day! I see the fall colors starting to blend and it makes me appreciate this time of year. Today Kyle is getting his Senior Pictures taken and I can hardly believe that our little family is at this stepping stone already. Tom is going to attempt to play air soft next month with Kyle at a cancer fundraiser in Kalamazoo. They are both getting pumped up about it. Cody has been busy with the varsity football team. They printed his name as Cole so Tom and I are having a little fun with that. Katie has been enjoying her sideline cheerleading on Wednesday night as she looks so grown up out in the stadium.
Tom received a call from Dr. Worden's office with their decision of treatment from the Tumor Board this week. He will receive Radiation on the C-6, C-7 area of his neck. Tom has chosen to have his radiation here in GR and has a consultation with Dr. Buth on October 11. Tom will also start infusions once a month with a bone strengthening drug called Zometa which has many of the same side effects that he experienced with chemo. He is not looking forward to this as he has enjoyed tasting food once again. Tom and I will head back to U of M on November 21 & 22 for Tom's scans/blood work and results.
Tom has also asked to have an Oncologist here in GR that could follow Dr. Worden's direction for treatment while staying closer to home. Tom is discussing all these steps with his Case Manager at our insurance company to make sure we do not have any surprises.
Going back a couple of weeks ago when Tom received the CT scan results from his PCP that stated the cancer continues to have "interval growth" I asked him how he felt about getting the call. I said I know that this is not surprising news, but how do you feel about it? He replied that he has confidence in the Tumor Board and Dr. Worden's team. He stays very positive. I hope that is not all for the families sake. I truly believe that one's outlook helps to determine the outcome. I know that these last 5 years have changed us in more ways than can be relayed in these monthly updates.
Thanks to my prayer warriors who continue to check in with us and keep the us on their daily lists. Tom and I could not make it through all of this and continue to press on without all the support we've received. I have also learned to be a better prayer warrior myself for others who share life's trials with me. 1 Peter 3:8 "You should be like on e big happy family, full of sympathy toward each other, loving one another with tender hearts and humble minds."
Tom received a call from Dr. Worden's office with their decision of treatment from the Tumor Board this week. He will receive Radiation on the C-6, C-7 area of his neck. Tom has chosen to have his radiation here in GR and has a consultation with Dr. Buth on October 11. Tom will also start infusions once a month with a bone strengthening drug called Zometa which has many of the same side effects that he experienced with chemo. He is not looking forward to this as he has enjoyed tasting food once again. Tom and I will head back to U of M on November 21 & 22 for Tom's scans/blood work and results.
Tom has also asked to have an Oncologist here in GR that could follow Dr. Worden's direction for treatment while staying closer to home. Tom is discussing all these steps with his Case Manager at our insurance company to make sure we do not have any surprises.
Going back a couple of weeks ago when Tom received the CT scan results from his PCP that stated the cancer continues to have "interval growth" I asked him how he felt about getting the call. I said I know that this is not surprising news, but how do you feel about it? He replied that he has confidence in the Tumor Board and Dr. Worden's team. He stays very positive. I hope that is not all for the families sake. I truly believe that one's outlook helps to determine the outcome. I know that these last 5 years have changed us in more ways than can be relayed in these monthly updates.
Thanks to my prayer warriors who continue to check in with us and keep the us on their daily lists. Tom and I could not make it through all of this and continue to press on without all the support we've received. I have also learned to be a better prayer warrior myself for others who share life's trials with me. 1 Peter 3:8 "You should be like on e big happy family, full of sympathy toward each other, loving one another with tender hearts and humble minds."
Wednesday, August 22, 2012
Good to be back to Blue!
I need to start this post with something that I feel is extremely important. This year we had 24 Team members join our Relay for Life of Barry County. What an important event in the fight against cancer. I can't exaggerate how important this organization is and what it does for research, treatment and overall funding. We had 2 team members walk the 24 hour Endurance walk...walking over 28 miles. Our daughter Katie and her friend walked 22 miles. Our son Cody came out for the first time and he said that he would like to do it again next year. We had friends and family stop in from as far north a Mt. Pleasant and south as Kalamazoo. I have to say the Silent lap was the most emotional for me as we walked a silent lap in memory of those who lost the fight. Immediately afterward the Luminary bags were light around the track in memory and honor of all cancer patients (even some K-9 bags were made). It is quite humbling to see to say the least.
OK, so now onto what everyone has been looking for: Tom and I headed to Detroit early Tuesday morning. We knew this would be an interesting visit as Tom's doctor and the Clinical Manager were both out of the office. Tom checked in, had his vitals and labs done then the doctor came into the room stating that Tom was to have a biopsy done as there was no conclusion in regards to whether the scan showed evidence of cancer. Tom and I gave each other the deer in the headlight look. Apparently his oncologist did not complete the report prior to his departure. He had called Tom the day after his scan to let us know that Tom was out of the Clinical Trial and that he would like to start Tom on the FDA approved drug. Tom informed him that he would be going back to his oncologist at the U of M to discuss options. We were supposed to be there to exit out of the program. There seemed to be a lot of confusion at this visit as the doctor was unaware of what was going on after the last MRI. We received paperwork that requested an additional follow up with Dr. Ali. When Tom and I asked what for, there was no answer. Tom will be calling the hospital next week but be assured that was our last visit. I know that Tom was there for the benefit of the drug. I am not saying that we had terrible care, but Tom kept stating that he was just a rat. As we exited the doors for the last time I think we both took in a breath of fresh air.
We spent the night at Tom's cousins home. Thanks again Dawn and Tom for opening up your home to us. We went to Side Track Bar and Grill and enjoyed dinner on the patio and good conversation. It was a working weekday for them so hopefully we didn't bother their schedules too much. It was such a pleasant evening :)
Wednesday we went to the U of M for a consultation. It is scary to be put in the same room you've had twice before and not had the best of news. I laughed and said "Three time's the charm" :) After a mound of paperwork and answering lots of questions, we have started a plan. The CD with all Tom's scans were given to their Radiologist to review. Tom will have a new CT of the chest scanned here in GR and it will be sent to the U of M Radiation department. Once all this has been reviewed Tom's case will go before the Tumor board it will be determined if Tom will be watched for tumor growth, have radiation of the C6-C7 vertebrae, or if he will be put on Vandetanib. At this point Dr. Worden stated that Tom has been through a lot these last two years on the XL-184 and would like to give him a break. Dr. Worden stated that the soft tissue has been stable and the cancer may have found another genetic path through the bone. If so, he believed treating it locally to be the best way to go. The side effects for this new drug is very similar to the XL-184 and he didn't want to put Tom's body through this unless there were definite signs of metastatic growth. He is concerned about quantity as well as quality of life.
Though Tom is a little concerned that taking nothing may mean that the cancer will spread, he was relieved that he can feel normal again for a while at least. Tom has been eating very well this last month, he is looking healthier (goodbye pasty white skin) and has gained energy. Tom's mind seems to be clearer and I notice his attitude about life has improved in the last month. I am happy to have my hubby back!
As I walked the silent lap last Friday I couldn't help but think someday this could be me walking in memory of my husband. I really had to fight back the tears and my heart went out to those who were walking in memory of someone close to them.
Psalms 42:5 "Why be downcast? Why be discouraged and sad? Hope in God! I shall yet praise him again. Yes, I shall again praise him for his help."
OK, so now onto what everyone has been looking for: Tom and I headed to Detroit early Tuesday morning. We knew this would be an interesting visit as Tom's doctor and the Clinical Manager were both out of the office. Tom checked in, had his vitals and labs done then the doctor came into the room stating that Tom was to have a biopsy done as there was no conclusion in regards to whether the scan showed evidence of cancer. Tom and I gave each other the deer in the headlight look. Apparently his oncologist did not complete the report prior to his departure. He had called Tom the day after his scan to let us know that Tom was out of the Clinical Trial and that he would like to start Tom on the FDA approved drug. Tom informed him that he would be going back to his oncologist at the U of M to discuss options. We were supposed to be there to exit out of the program. There seemed to be a lot of confusion at this visit as the doctor was unaware of what was going on after the last MRI. We received paperwork that requested an additional follow up with Dr. Ali. When Tom and I asked what for, there was no answer. Tom will be calling the hospital next week but be assured that was our last visit. I know that Tom was there for the benefit of the drug. I am not saying that we had terrible care, but Tom kept stating that he was just a rat. As we exited the doors for the last time I think we both took in a breath of fresh air.
We spent the night at Tom's cousins home. Thanks again Dawn and Tom for opening up your home to us. We went to Side Track Bar and Grill and enjoyed dinner on the patio and good conversation. It was a working weekday for them so hopefully we didn't bother their schedules too much. It was such a pleasant evening :)
Wednesday we went to the U of M for a consultation. It is scary to be put in the same room you've had twice before and not had the best of news. I laughed and said "Three time's the charm" :) After a mound of paperwork and answering lots of questions, we have started a plan. The CD with all Tom's scans were given to their Radiologist to review. Tom will have a new CT of the chest scanned here in GR and it will be sent to the U of M Radiation department. Once all this has been reviewed Tom's case will go before the Tumor board it will be determined if Tom will be watched for tumor growth, have radiation of the C6-C7 vertebrae, or if he will be put on Vandetanib. At this point Dr. Worden stated that Tom has been through a lot these last two years on the XL-184 and would like to give him a break. Dr. Worden stated that the soft tissue has been stable and the cancer may have found another genetic path through the bone. If so, he believed treating it locally to be the best way to go. The side effects for this new drug is very similar to the XL-184 and he didn't want to put Tom's body through this unless there were definite signs of metastatic growth. He is concerned about quantity as well as quality of life.
Though Tom is a little concerned that taking nothing may mean that the cancer will spread, he was relieved that he can feel normal again for a while at least. Tom has been eating very well this last month, he is looking healthier (goodbye pasty white skin) and has gained energy. Tom's mind seems to be clearer and I notice his attitude about life has improved in the last month. I am happy to have my hubby back!
As I walked the silent lap last Friday I couldn't help but think someday this could be me walking in memory of my husband. I really had to fight back the tears and my heart went out to those who were walking in memory of someone close to them.
Psalms 42:5 "Why be downcast? Why be discouraged and sad? Hope in God! I shall yet praise him again. Yes, I shall again praise him for his help."
Monday, July 30, 2012
Plan B/The end of XL-184
On Sunday Tom and I headed back to West Bloomfield for his intensive MRI scan. It was another pretty drive and the traffic was not too heavy for a Sunday. The MRI took about an hour. During the last scan Tom could not hold in his cough and they had to repeat the 5 minute scan. I feel so bad with Tom's neck surgery, he has a hard time with speaking, swallowing, no coughing ordeals.
Today Tom received a phone call from Dr. Ali stating that the MRI scans showed the cancer has metastasized to the C6-C7 vertebrae. Tom is off the drug and will need to go back in August to exit the study. Dr. Ali did say that he would like to go before the board and to confirm that he will be removed from the trial. He did talk about putting Tom on the Vandetanib or another drug that can be prescribed to MTC patients.
Tom is probably going to take another approach; he is planning to call his primary doctor and get a referral back to Dr. Worden at the U of M. After a couple visits to Ann Arbor he can possibly move his care to one of Dr. Worden's colleagues in Grand Rapids. We have talked about this option since our January visit with Dr. Worden; a Plan B of sorts.
While the XL-184 was not perfect, it did give us two more years together. I am asking my prayer warriors to please keep us in mind. Tom does very well in these circumstances, and I just tend to fret and become the grumpy caretaker (as he calls me). We need a clear plan as to Tom' treatment and hope that he will have a better quality of life.
1 Peter 4:12 "Dear friends, don't be bewildered or surprised when you go through the fiery trials ahead, for this is not strange, unusual thing that is going to happen to you."
Today Tom received a phone call from Dr. Ali stating that the MRI scans showed the cancer has metastasized to the C6-C7 vertebrae. Tom is off the drug and will need to go back in August to exit the study. Dr. Ali did say that he would like to go before the board and to confirm that he will be removed from the trial. He did talk about putting Tom on the Vandetanib or another drug that can be prescribed to MTC patients.
Tom is probably going to take another approach; he is planning to call his primary doctor and get a referral back to Dr. Worden at the U of M. After a couple visits to Ann Arbor he can possibly move his care to one of Dr. Worden's colleagues in Grand Rapids. We have talked about this option since our January visit with Dr. Worden; a Plan B of sorts.
While the XL-184 was not perfect, it did give us two more years together. I am asking my prayer warriors to please keep us in mind. Tom does very well in these circumstances, and I just tend to fret and become the grumpy caretaker (as he calls me). We need a clear plan as to Tom' treatment and hope that he will have a better quality of life.
1 Peter 4:12 "Dear friends, don't be bewildered or surprised when you go through the fiery trials ahead, for this is not strange, unusual thing that is going to happen to you."
Tuesday, July 24, 2012
Scan, Scans, Scans & More Scans
Tom, Katie, and I headed back to Detroit this month for Tom's scans & results. This has been a very trying month for Tom physically. He has been trying to eat better than before and attempting to be up & moving with 3 active kids, getting his backyard around, and keep pushing himself everyday to be moving. The record heat has really pushed Tom's limits also. He is fatigued and....grumpy! We had many discussions about Tom needing a break from the drug. I of course kept telling him he needed to stay on the drug and poo poohing his need to take a breather. To tell the truth I'm afraid that if he goes off and feels better, he'll chose not to go back on.
Sunday Tom had his first scan and off to the Tigers we went. What a game! It was a great game and we enjoyed watching them win. It was hard on Tom to sit in the sun and heat but he didn't want to miss a minute. Monday was his other scans and he was in good spirits when we got back to the Guest house. He seems to react better to some contrasts than others.
Tuesday we headed to our meeting with Dr. Ali to get the results. His Clinical Manager talked with Tom about the possibility of reducing his dosage as he is having a hard time this past month. She said he is currently the only one on the study taking such a high dose of drug. Dr. Ali said that Tom's Bone scan came in stable. He stated that the CT scan is showing that the lesions in his liver & pancreas are stable. He was concerned with the change in the vertebrae (c6 & c7). This could be progression of the disease, but it could also be other causes. There needs to be another scan to take a closer look at this area. At this point he took Tom off the drug for 30 days. However, we know that if there is evidence of the cancer metastasizing again, Tom will be removed from the trial and we will be looking for other options.
When we got home tonight we received the call from the hospital for his MRI scan. On Sunday we will be heading back to Detroit for the day. Tom remains in good spirits joking about getting to enjoy a burrito and a cold beer this month. He was actually happy to hear the news of the break & smiled when the doctor first told us. I on the other hand sink into a quiet and gloomy state (being a good caretaker I am not). These realities hit harder than I am able to admit. I talk about having Tom here years longer than I believed was possible and that I understand how precious life is. It's another to remember that the odds are against him & to live with the fact that I selfishly want and expect many more. On the drive home I kept telling myself to lighten up, I know who is in control and what good does worrying do; so instead I prayed for the results and that we are prepared for the next steps in His plan. Lord help us through the next 30 days.
Proverbs 20:24 "Since the Lord is directing out steps, why try to understand everything that happens along the way?"
Sunday Tom had his first scan and off to the Tigers we went. What a game! It was a great game and we enjoyed watching them win. It was hard on Tom to sit in the sun and heat but he didn't want to miss a minute. Monday was his other scans and he was in good spirits when we got back to the Guest house. He seems to react better to some contrasts than others.
Tuesday we headed to our meeting with Dr. Ali to get the results. His Clinical Manager talked with Tom about the possibility of reducing his dosage as he is having a hard time this past month. She said he is currently the only one on the study taking such a high dose of drug. Dr. Ali said that Tom's Bone scan came in stable. He stated that the CT scan is showing that the lesions in his liver & pancreas are stable. He was concerned with the change in the vertebrae (c6 & c7). This could be progression of the disease, but it could also be other causes. There needs to be another scan to take a closer look at this area. At this point he took Tom off the drug for 30 days. However, we know that if there is evidence of the cancer metastasizing again, Tom will be removed from the trial and we will be looking for other options.
When we got home tonight we received the call from the hospital for his MRI scan. On Sunday we will be heading back to Detroit for the day. Tom remains in good spirits joking about getting to enjoy a burrito and a cold beer this month. He was actually happy to hear the news of the break & smiled when the doctor first told us. I on the other hand sink into a quiet and gloomy state (being a good caretaker I am not). These realities hit harder than I am able to admit. I talk about having Tom here years longer than I believed was possible and that I understand how precious life is. It's another to remember that the odds are against him & to live with the fact that I selfishly want and expect many more. On the drive home I kept telling myself to lighten up, I know who is in control and what good does worrying do; so instead I prayed for the results and that we are prepared for the next steps in His plan. Lord help us through the next 30 days.
Proverbs 20:24 "Since the Lord is directing out steps, why try to understand everything that happens along the way?"
Wednesday, June 20, 2012
Today is a Present
It's funny how during the month I think...that was cool, I'll post that on my next blog. Then I sit down to share and I think, what should be the focus of my topic this time and what did I try to remember to share? I'll start with the kids: Kyle is still working during this summer, airsofting, and just enjoying the summer before his senior year. Cody is in Football camp this week, U of M football camp, and I hope he's enjoying it while learning from some pretty impressive coaches. He comes home tomorrow so we'll see how awesome it was! :) Katie is in basketball camp, AquatiCats swimming program and has her first meet tomorrow (thanks Grandpa and Grandma for getting her there). They are all enjoying some hazy lazy days of summer. Our family has been working very hard on the yard and getting the pool in. Tom is not up to vacationing and I love to soak up the sun. The kids love to float and swim so Merry Christmas Andrews family our vacation in our own backyard!
Tom is slowly going downhill. He is still struggling to take his Potassium. We've tried the liquid, the powder, and the pill forms. He sometimes can get the pill down, but the other two he can't swallow down due to the nasty taste. Some days he has an appetite, but many days he lives on soups, cereal, or just a few bites of his dinner. He mentioned that he needs more protein drinks for those nauseated days. When Tom was in Detroit last they mentioned that the trial will most likely be extended for another year. He was disappointed as he still would like to move his care back here to our side of the state. I try not to let him get too down. As he told his friend from Ohio, "I start to become a grumpy cancer patient until Val gives me a kick and tells me to straighten up" I just mention to him that life could be much different and that we make of it what we want.
A couple of weeks ago I was talking with a coworker who was having a bad day. Her husband has health issues and her mother is elderly and also needs care. She was feeling the weight of the world on her shoulders. I remember tell her that I didn't have great words of wisdom but could only say....You can't be everything to everyone or even someone. I can only hope that when I look back at my life I can say that I did the best that I could. That I have no guilt for what I did and did not do. She said Valerie, that's the best advice and I needed to hear that today.
We need to hold each other up and be understanding with one another during our struggles in life. We all live in precious moments and we don't always "get" what others are going through. I am still so very grateful for so many people that have walked with us these years. I can't thank my prayer warriors enough for what they helped me through. Our road has not always been easy and I'm not sure it will get any easier with this disease and its painful side effects of the drug. But I do know that when I wake up in the morning I am so glad that I have this day (this present) and am determined to make the most of it.
James 3:16-18 "For wherever there is jealousy or selfish ambition, there will be disorder and every other kind of evil. But the wisdom that comes from heaven is first of all pure and full of quiet gentleness. Then it is peace-loving and courteous. It allows discussion and is willing to yield to others; it is full of mercy and good deeds. It is wholehearted and straightforward and sincere. And those who are peacemakers will plant seeds of peace and reap a harvest of goodness."
Tom is slowly going downhill. He is still struggling to take his Potassium. We've tried the liquid, the powder, and the pill forms. He sometimes can get the pill down, but the other two he can't swallow down due to the nasty taste. Some days he has an appetite, but many days he lives on soups, cereal, or just a few bites of his dinner. He mentioned that he needs more protein drinks for those nauseated days. When Tom was in Detroit last they mentioned that the trial will most likely be extended for another year. He was disappointed as he still would like to move his care back here to our side of the state. I try not to let him get too down. As he told his friend from Ohio, "I start to become a grumpy cancer patient until Val gives me a kick and tells me to straighten up" I just mention to him that life could be much different and that we make of it what we want.
A couple of weeks ago I was talking with a coworker who was having a bad day. Her husband has health issues and her mother is elderly and also needs care. She was feeling the weight of the world on her shoulders. I remember tell her that I didn't have great words of wisdom but could only say....You can't be everything to everyone or even someone. I can only hope that when I look back at my life I can say that I did the best that I could. That I have no guilt for what I did and did not do. She said Valerie, that's the best advice and I needed to hear that today.
We need to hold each other up and be understanding with one another during our struggles in life. We all live in precious moments and we don't always "get" what others are going through. I am still so very grateful for so many people that have walked with us these years. I can't thank my prayer warriors enough for what they helped me through. Our road has not always been easy and I'm not sure it will get any easier with this disease and its painful side effects of the drug. But I do know that when I wake up in the morning I am so glad that I have this day (this present) and am determined to make the most of it.
James 3:16-18 "For wherever there is jealousy or selfish ambition, there will be disorder and every other kind of evil. But the wisdom that comes from heaven is first of all pure and full of quiet gentleness. Then it is peace-loving and courteous. It allows discussion and is willing to yield to others; it is full of mercy and good deeds. It is wholehearted and straightforward and sincere. And those who are peacemakers will plant seeds of peace and reap a harvest of goodness."
Sunday, May 13, 2012
Love One Another
We are on the final countdown to the end of school year 2011-2012. Cody continues in weight training & Katie starts swim club. All three kids are going to camps at some point this summer and our weekends seem to be filling up quickly. Kyle continues to work and we are having our first parents meeting for the 2013 graduating class. How was it that a blink of an eye I was a new mother? Now my boys both look down at me and their sister is almost my height?
Tom and I had a great time at the wedding reception. I got out on the dance floor to shake things up with Cousin Susan, the wedding party and Aunt Judy. Tom even came out on the dance floor a few times! The next morning we were up early and headed to West Bloomfield. Tom had 2 days of scans which he handled pretty well. The Tigers game was cancelled which probably was a blessing as Tom was not feeling all that great, but he had such a positive attitude. The results on Tuesday came back Stable, but a side note that he needs to CONSISTENTLY take his Potassium. I know that he has a hard time taking this pill and does his best, but he does tend to skip it frequently. His levels were low, but a mild discussion about it's importance and they let him come home.
I also took Wednesday off that week and Tom bought me a new set of golf clubs and we went to the Dungeon for lunch which is in Tom's childhood stomping grounds. We had a great day together and the day flew by for having no "plans". Thursday I took a trip with our daughters 6th Grade class to the Chicago Science & Industry Museum. We had a great day and I was exhausted when we got back home. Friday I tried not to pout about going back to work :)
Today we had a fitting sermon about God is Love. Pastor Gary said that because God is Love his flavor flows through all he does. Apostle John wrote about Love and he states: The Lord commands us to Love , if that alone is done it suffices. He ended that Jesus commanded us to Love one Another. All through out my life, my mother ended every note she wrote & laid upon our counter "Love One Another" What a smart and loving woman she truly is and I feel so blessed to have her in my life. I hope that I have left that same influence upon the people I meet. Life can be hard and if we let bitterness settle in, we miss the opportunity that life has to offer.
1 John 3:23 "And this is what God says we must do: Believe on the name of his Son Jesus Christ, and love one another."
Friday, April 27, 2012
On the Road
Tom and the two youngest children went to Detroit over Spring break. The kids accompanied their dad to his monthly visit. In return Tom took them shopping at the Tangier Outlet. Tom felt that since we could not get away for Spring break, he could at least lighten his wallet with shopping. They all came home smiling and seemed to have a good visit. While they were gone, I took Kyle out for a dinner as us "working" people deserved a little something special too. I am realizing that my time with Kyle is getting shorter. I am glad that he is only a Junior this year. Next year will fly by too quickly if time moves as it has lately.
Tom is getting ready to have his next set of scans once again. We are fitting in a little fun with this medical trip. Toms cousin's daughter is having a reception in Bay City and then its onto D-town for two days of scans and the third day the doctor visit and results. However we will fit in a Tigers baseball game with friends before we head back home.
I am actually taking 4 vacation days. I have not had this much time off since 2008. That's a lot of working days! I am looking forward to having my husband's undivided attention. I hope he feels up to doing all that we have planned as earlier this week he was really fighting his chemo effects. I remind him not to push himself too hard. He is not working full-time for a reason but I'm afraid that he sometimes forgets that.
My father got into a car accident last week and it brought back so many emotions of losing my brother. My dad is fine, but it's another reminder of how precious life is. During this time I was reading a book and came across this from The Life of Abraham Lincoln
"This bereavement took much from Lincoln. Did it give him nothing? Patience, earnestness, tenderness, sympathy -- these are sometimes the gifts which are sent by the messenger Sorrow"
Saturday, March 31, 2012
Never Sitting Still
Here we are...the last day of March! Time does not slow down. Yesterday was the first day of Spring break for the kids & the younger two are taking a break. Kyle has a job and will be working 40+ hours at this job (welcome to the working world my son!) This past month Cody has his Wrestling Banquet and the coach gave him recognition for his tough job in his weight class. His dad was so proud that Cody got his Varsity letter and is looking into either displaying it or getting Cody his varsity jacket. Katie will be busy as she is signed up for a new swim club and will have to balance that with her basketball and volleyball camps. We'll have to see if she can fit that all in!
Tom is slipping back into eating cereal three times a day. His appetite is there, but he does not handle the regular meals very well. He is going to have to get back on the Ensure drinks and such as one can't survive on cereal alone. I am on him to try eating as I saw what it did to energy level last time. He continues teaching CPR classes and keeping himself busy with small jobs. I am glad that he has a purpose to get himself up and going everyday.
His trip into Detroit this past month was interesting. It looks like the drug company is making an attempt to push XL-184 to be FDA approved. Tom is very excited about the fact that he could stop making the long drive every month. As I am unable to go with him every time; for me it would mean that I could attend his visits here & be able to support him more. I believe we will know by May if this is moving forward.
Tom was never a sit still kind of guy. When we were first married I think he made people a little nervous because he always stood. I would explain to friends and my family that was just the way he is. I am glad that he still doing better and pushing himself even though being on this medicine makes him feel like curling up on the couch and let the world spin by. Last night Tom ran into an acquaintance that has also been diagnosis with cancer. They talked about their life changing experience and how their outlook has been affected since being diagnosed with this disease. It sounded like is was a deep conversation. I am so thankful that Tom can connect with other cancer survivors and they can empathize unlike so many of us.
"Now your attitude and thought must all be constantly changing for the better." Ephesians 4:23
Tom is slipping back into eating cereal three times a day. His appetite is there, but he does not handle the regular meals very well. He is going to have to get back on the Ensure drinks and such as one can't survive on cereal alone. I am on him to try eating as I saw what it did to energy level last time. He continues teaching CPR classes and keeping himself busy with small jobs. I am glad that he has a purpose to get himself up and going everyday.
His trip into Detroit this past month was interesting. It looks like the drug company is making an attempt to push XL-184 to be FDA approved. Tom is very excited about the fact that he could stop making the long drive every month. As I am unable to go with him every time; for me it would mean that I could attend his visits here & be able to support him more. I believe we will know by May if this is moving forward.
Tom was never a sit still kind of guy. When we were first married I think he made people a little nervous because he always stood. I would explain to friends and my family that was just the way he is. I am glad that he still doing better and pushing himself even though being on this medicine makes him feel like curling up on the couch and let the world spin by. Last night Tom ran into an acquaintance that has also been diagnosis with cancer. They talked about their life changing experience and how their outlook has been affected since being diagnosed with this disease. It sounded like is was a deep conversation. I am so thankful that Tom can connect with other cancer survivors and they can empathize unlike so many of us.
"Now your attitude and thought must all be constantly changing for the better." Ephesians 4:23
Monday, February 27, 2012
Happy Every After
I must say that the last comment really got me thinking....somebody from the UK looked at the site (and read the postings of the last almost 5 years) wow, now I'm impressed. People have told me that I do a good job and a few have joked that I should write a book. I figure this is my book: a book about our lives with Cancer. I found a status page in the blog site and found that people from China, Japan, Netherlands, etc. have viewed this site. I do realize that anybody can read it but I am humbled that many people from all over the world are. I understand people are reaching out and looking for answers, feel good stories, and hope. I wish this was like a fairy tale that ended with a Happy Ever After.
Tom was back in Detroit earlier this month for his tests and results. Tom broke up the tests a little so that I could go with him on a Sunday morning for his MRI. It was a beautiful sunny winter day with clear roads. I drove there and most of the way back grateful that we had such a mild winter thus far. Then Tom and his sister went back for another day of test and stayed over for the results and blood work. Tom did not see Dr. Ali this time. The doctor he saw told him that his scans were once again stable. He also told Tom that he had to deal with these nasty side effects as the drug is keeping his cancer at bay. I know that Tom appreciated hearing this even though it is not exactly what he would like to hear.
Tom has been slowly feeling the effects he felt last December before going off the treatment. It is hard to see him slip back into this pattern. He is trying to act like it's not that big of a deal, but after 22 years of marriage he can't hide it from me. I am starting to constantly ask him again how he feels and he smiles and say "Wonderful" so I tell him, "Me too"
February is also our babies birthday and on her special day was her last "Daddy/Daughter dance" that the school sponsors. I think they had a good night together and Tom said that she did not leave his side much. They danced a lot and then went out for dinner. I was so glad that they had this time together, special memories that will last a lifetime.
Back to the Happily Ever After; well to no one's surprise I believe we can have that in the next life. Hebrews 13:14 "For this world is not our home; we are looking forward to our everlasting home in heaven."
Amen
Tom was back in Detroit earlier this month for his tests and results. Tom broke up the tests a little so that I could go with him on a Sunday morning for his MRI. It was a beautiful sunny winter day with clear roads. I drove there and most of the way back grateful that we had such a mild winter thus far. Then Tom and his sister went back for another day of test and stayed over for the results and blood work. Tom did not see Dr. Ali this time. The doctor he saw told him that his scans were once again stable. He also told Tom that he had to deal with these nasty side effects as the drug is keeping his cancer at bay. I know that Tom appreciated hearing this even though it is not exactly what he would like to hear.
Tom has been slowly feeling the effects he felt last December before going off the treatment. It is hard to see him slip back into this pattern. He is trying to act like it's not that big of a deal, but after 22 years of marriage he can't hide it from me. I am starting to constantly ask him again how he feels and he smiles and say "Wonderful" so I tell him, "Me too"
February is also our babies birthday and on her special day was her last "Daddy/Daughter dance" that the school sponsors. I think they had a good night together and Tom said that she did not leave his side much. They danced a lot and then went out for dinner. I was so glad that they had this time together, special memories that will last a lifetime.
Back to the Happily Ever After; well to no one's surprise I believe we can have that in the next life. Hebrews 13:14 "For this world is not our home; we are looking forward to our everlasting home in heaven."
Amen
Wednesday, February 1, 2012
Advice
Tom had gone off the XL-184 for Christmas and his trip with the boys to Vegas. He had a great time and gained 10 pounds. He came back was able to start back up on the treatment. The chemo effects are starting to return, but he has kept a good attitude during all of this.
Today Tom and I went to the U of M to get Dr. Worden's opinion about staying on the trial or switching to the newly FDA approved drug for MTC. Dr. Worden went over his symptoms and reasons to switch. He is not privy to the trial Tom is currently on, but has patience who failed so he has some knowledge of the trial. He suggested that Tom stay on his current treatment. He said that Tom should be taking this drug while he can take advantage of it's benefits. The drugs are similar, but not exactly. He advised Tom to stay on this until the results do not benefit him. Basically if it's working don't mess with it.
When we left the Cancer Center Tom looked at me and said, "Do you think this was a wasted trip?" I do not ever think getting information and a professional opinion about cancer treatment can be a waste of time. I am grateful that we have a doctor we feel will give us solid facts and a valued opinion. It was a nice trip (sunshine and dry roads) to spend with my man. We had a good day together and I appreciate his positive attitude.
Kids are all doing well. I had Parent Teacher Conferences with the boys teachers and it was all pretty positive. Cody is like his dad and likes to talk. Kyle is quiet like his mother. However all three kids got positive comments about their work habits and how they respect their teachers. Cody had his last Conference Wrestling meet tonight. Though his record will not give him bragging rights, I am proud of his efforts. It's hard to start this sport as late as he did. He has made much improvement and he is a Freshman going up against a lot of Jr. and Sr. high boys. I hope he continues it through his High School years and I'm told it will help him for Football.
We have a busy week ahead. Saturday Cody has a individual wrestling meet and then Tom and Katie will have their last Daddy/Daughter dance (on her 12th b-day). Sunday Tom and I head to West Bloomfield for one on Tom's scans. Then Tom will go back on Tuesday for scans and the results on Wednesday. Life does not slow down for a moment!
Thanks prayer warriors for your continued prayers. What would we do without your support? I am glad that we were given clear advice to make a good decision. I am grateful that Tom is here with me another year :) I hope that Tom can remain positive and fight this nasty disease for years to come!
Today Tom and I went to the U of M to get Dr. Worden's opinion about staying on the trial or switching to the newly FDA approved drug for MTC. Dr. Worden went over his symptoms and reasons to switch. He is not privy to the trial Tom is currently on, but has patience who failed so he has some knowledge of the trial. He suggested that Tom stay on his current treatment. He said that Tom should be taking this drug while he can take advantage of it's benefits. The drugs are similar, but not exactly. He advised Tom to stay on this until the results do not benefit him. Basically if it's working don't mess with it.
When we left the Cancer Center Tom looked at me and said, "Do you think this was a wasted trip?" I do not ever think getting information and a professional opinion about cancer treatment can be a waste of time. I am grateful that we have a doctor we feel will give us solid facts and a valued opinion. It was a nice trip (sunshine and dry roads) to spend with my man. We had a good day together and I appreciate his positive attitude.
Kids are all doing well. I had Parent Teacher Conferences with the boys teachers and it was all pretty positive. Cody is like his dad and likes to talk. Kyle is quiet like his mother. However all three kids got positive comments about their work habits and how they respect their teachers. Cody had his last Conference Wrestling meet tonight. Though his record will not give him bragging rights, I am proud of his efforts. It's hard to start this sport as late as he did. He has made much improvement and he is a Freshman going up against a lot of Jr. and Sr. high boys. I hope he continues it through his High School years and I'm told it will help him for Football.
We have a busy week ahead. Saturday Cody has a individual wrestling meet and then Tom and Katie will have their last Daddy/Daughter dance (on her 12th b-day). Sunday Tom and I head to West Bloomfield for one on Tom's scans. Then Tom will go back on Tuesday for scans and the results on Wednesday. Life does not slow down for a moment!
Thanks prayer warriors for your continued prayers. What would we do without your support? I am glad that we were given clear advice to make a good decision. I am grateful that Tom is here with me another year :) I hope that Tom can remain positive and fight this nasty disease for years to come!
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