Dear Friends,
One year ago today, Matt, my mom, and I sat in the doctor's office and had it confirmed that I had kidney cancer. Two days later, after two nights in the ER, I would be admitted to the hospital. Oh my, what a year it has been since that day. On that day, I don't think I would have thought it possible to say this, but it has been a year for which I now have an abundance of things to give thanks for.
From that day forward, Matt and I had to decide just how much we believed in the God we have always followed and trusted in. Would we love Him and follow Him if things didn't go the way we wanted them to? Could we stand firmly on His Word even when we doubted? Would He be enough to get us through the many unknowns we would have to face? To all, we can unreservedly say YES! He has proven Himself to be truth, to be patient, to be compassionate, to be our comforter, to be our wisdom, to be God. I couldn't have made it this far without Him. I give my eternal thanks to Him.
This year has been full of family and friends...phone calls, caring words, shared Bible verses, cards and emails, meals, invitations to my kids to spend days and nights with friends, people who have cleaned and ironed and cooked and did so many things that I would never have asked for but they were willing to do anyway. I am beyond grateful.
And it's been a year of prayer. Your prayers for me and my husband and kids, for my family, for my doctors, for treatments and side effects, for wisdom in making decisions, for strength in times of weakness and doubt, and for healing. Your prayers have sustained me.
I don't know what the next year holds, I just know that God is continuing to grow me into the woman He wants me to be. It isn't easy, it isn't really something I want to go through, but if it is drawing me closer to Him, molding me to be more like Him, and making me bolder to share Him, then so it will be.
I will continue to give thanks,
Danene
September 23, 2009
Wednesday, September 23, 2009
Wednesday, September 16, 2009
A Short Update
Okay, Friends,
I got the results from the radiologist, and I will tell you what I can, but most of it is in language that I don't totally understand, even with my Medical Terminology for Dummies book at my side. They couldn't use a contrast dye during the scans this time because my creatinine level was on the high side, so the findings weren't as clear as in the past.
On the chest scan, there is an increase in size and number of noncalcified pulmonary (lungs) nodules. In the left lower lobe, the nodule appears to be slightly more nodular and enlarged at 1.4 cm x 2.2 cm. (previously .7 cm x 2.0 cm.) There is also development of pleural effusions, which is the escape of fluid into the pleural cavity, which surrounds the lungs. That is the part that could or could not involve my cough. The doctor just isn't sure. There also is evidence that some of my lymph nodes show progression of the disease.
On the abdomen/pelvic scan, there is a soft tissue mass in the left lower quadrant that has increased in size from 1.5 cm to 2.2 cm. All of this is consistent with metastatic progression.
So, here's the thing. All of that says that the disease is still trying to win, but I'm still in the fight. So join me as I hit my knees, figuratively and literally, and turn it all over to God. I may not understand completely what is happening, but He knows, and I trust Him with my life.
Love you all,
Danene
September 16, 2009
I got the results from the radiologist, and I will tell you what I can, but most of it is in language that I don't totally understand, even with my Medical Terminology for Dummies book at my side. They couldn't use a contrast dye during the scans this time because my creatinine level was on the high side, so the findings weren't as clear as in the past.
On the chest scan, there is an increase in size and number of noncalcified pulmonary (lungs) nodules. In the left lower lobe, the nodule appears to be slightly more nodular and enlarged at 1.4 cm x 2.2 cm. (previously .7 cm x 2.0 cm.) There is also development of pleural effusions, which is the escape of fluid into the pleural cavity, which surrounds the lungs. That is the part that could or could not involve my cough. The doctor just isn't sure. There also is evidence that some of my lymph nodes show progression of the disease.
On the abdomen/pelvic scan, there is a soft tissue mass in the left lower quadrant that has increased in size from 1.5 cm to 2.2 cm. All of this is consistent with metastatic progression.
So, here's the thing. All of that says that the disease is still trying to win, but I'm still in the fight. So join me as I hit my knees, figuratively and literally, and turn it all over to God. I may not understand completely what is happening, but He knows, and I trust Him with my life.
Love you all,
Danene
September 16, 2009
Monday, September 14, 2009
A Chuckle for the Day
Well, Friends,
I think this time circumstances call for me to begin with a little levity. So here's your chuckle for the day:
Is My Duck Dead?
A woman brought a very limp duck into a veterinary surgeon. As she laid her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm sorry, your duck, Cuddles, has passed away." The distressed woman wailed, "Are you sure?" "Yes, I am sure. The duck is dead." replied the vet. "How can you be so sure?" she protested. "I mean, you haven't done any testing on him or anything. He might just be in a coma or something." The vet rolled his eyes, turned around and left the room. He returned a few minutes later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked up at the vet with sad eyes and shook his head. The vet patted the dog on the head and took it out of the room. A few minutes later he returned with a cat. The cat jumped on the table and also delicately sniffed the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room. The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck." The vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" she cried, "$150 just to tell me my duck is dead?" The vet shrugged, "I'm sorry. If you had just taken my word for it, the bill would have been $20. But with the Lab report and the Cat scan, it's now $150."
When you're done laughing, I'll fill you in the fact that Matt and I spent the day in San Francisco. I had my CT scans done early this morning at UCSF's China Basin facility, then we had the chance to stroll around near Union Square for awhile, and ate at the most wonderful hole-in-the-wall place called Dottie's. Undeniably one of the best breakfasts I have had in a long while, and a joy to sit at the counter and watch the two cooks at the stove create. By 12:30, we were at Mount Zion meeting with Dr. Ryan.
While we had my blood test results, and the doctor had seen my chest scan, we did not have the rest of the scans nor the radiologist's report yet. So I will have to update you as I receive those results from the doctor in the next few days. My blood test showed that my creatinine level was high (in short, the amount of waste that my kidney allows through), and that my liver functions were high. These are both attributed to the Sutent, and the creatine also to the fact that I only have one kidney. My thyroid's TSH level, if you recall, was extremely low last time, and this time the TSH was almost five times higher than the highest normal level. So I will begin on thyroid replacement to see if it can be helped, and hopefully in the process will gain some energy and have some other things straighten out.
My cough is not better, and the good doctor is not sure exactly what to attribute it to. It could be just seasonal, but it also could be a result of what is going on in my lungs. Again, I don't have all the details yet, so be patient as we continue to receive information and confirm things, but it appears there could be some sort of pneumococcal growth, as well as at least one nodule that has continued to grow. The Sutent is not 'not working', but it is not working to the degree that it needs to be. With many kinds of chemo, when it is not working, it is in the best interests of the patient to take them off of it. That is not the case with this kind of chemo. Sutent is a chemo that creates a kind of wall between the cancer and its ability to receive oxygen and grow. On the other side of the wall, it is possible for the blocked effects to begin to back up and build, so that if you were to abruptly remove the 'wall', it could advance with greater force, causing the cancer to have a big growth spurt of sorts. There are other types of this same chemo I could try, but right now UCSF and a manufacturer are at the end of a phase of a trial that the doctor would like me to look into that might provide a better attack. It would involve taking a different form of this same type of chemo, but simultaneously taking a second form of a different type of chemo that attacks kidney cancer in another way. If the doctor running the trial, and her team, which includes my doctor, feels that I am a good fit for this, it would put me in the second phase of this trial, which is to see how this combination attacks kidney cancer. This second drug is FDA approved, and the patients in the first phase have participated to see what is the highest level of this chemo that can be taken with the other one, with the lowest bad side effects. I have a lot of respect for those patients.
Since there are still some administrative things going on with phase one of the trial, I will go on one more round of Sutent starting Thursday night, then meet with Dr. Ryan in six weeks to make some decisions as to what is next. I will hear from the doctor who heads up the trial in the next few days, to learn more and have many questions answered.
Matt and I have sat in many doctor's offices over the past year, and we have heard many different things that have changed our lives in ways we would have never dreamed of. My attitude has always been that I just need to know what you want me to do and I will do it. I'm ready to fight, and I'm in it for the long haul. But today hurt, and for the first time, I cried on the way home. Then as I listened on my iPod to a Michael W. Smith song, I was struck by these words:
"And even now that I'm inside your hands
Help me not to grow prideful again
Don't let me forsake sacrifice
Jesus, You be lifted high
And if I'm blessed with the riches of kings
How could I ever think that it was me
For You brought me from darkness to light
Jesus, You be lifted high"
For the first time, it was as if I was hearing God tell me to get out of the way and let Him. Whatever happens, whatever the fight, whatever the course of action, do my part, but leave the rest to Him. He will take care of the long haul, whatever it may be, and in the end I just need to fall to my knees so it's Him that you see, not me.
Help me hold true to that, my friends. Continue to pray for my family, and especially my husband. Take the time to ask him how HE is doing, not how I am doing. I would appreciate that. I love you all.
Danene
September 14, 2009
I think this time circumstances call for me to begin with a little levity. So here's your chuckle for the day:
Is My Duck Dead?
A woman brought a very limp duck into a veterinary surgeon. As she laid her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm sorry, your duck, Cuddles, has passed away." The distressed woman wailed, "Are you sure?" "Yes, I am sure. The duck is dead." replied the vet. "How can you be so sure?" she protested. "I mean, you haven't done any testing on him or anything. He might just be in a coma or something." The vet rolled his eyes, turned around and left the room. He returned a few minutes later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked up at the vet with sad eyes and shook his head. The vet patted the dog on the head and took it out of the room. A few minutes later he returned with a cat. The cat jumped on the table and also delicately sniffed the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room. The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck." The vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" she cried, "$150 just to tell me my duck is dead?" The vet shrugged, "I'm sorry. If you had just taken my word for it, the bill would have been $20. But with the Lab report and the Cat scan, it's now $150."
When you're done laughing, I'll fill you in the fact that Matt and I spent the day in San Francisco. I had my CT scans done early this morning at UCSF's China Basin facility, then we had the chance to stroll around near Union Square for awhile, and ate at the most wonderful hole-in-the-wall place called Dottie's. Undeniably one of the best breakfasts I have had in a long while, and a joy to sit at the counter and watch the two cooks at the stove create. By 12:30, we were at Mount Zion meeting with Dr. Ryan.
While we had my blood test results, and the doctor had seen my chest scan, we did not have the rest of the scans nor the radiologist's report yet. So I will have to update you as I receive those results from the doctor in the next few days. My blood test showed that my creatinine level was high (in short, the amount of waste that my kidney allows through), and that my liver functions were high. These are both attributed to the Sutent, and the creatine also to the fact that I only have one kidney. My thyroid's TSH level, if you recall, was extremely low last time, and this time the TSH was almost five times higher than the highest normal level. So I will begin on thyroid replacement to see if it can be helped, and hopefully in the process will gain some energy and have some other things straighten out.
My cough is not better, and the good doctor is not sure exactly what to attribute it to. It could be just seasonal, but it also could be a result of what is going on in my lungs. Again, I don't have all the details yet, so be patient as we continue to receive information and confirm things, but it appears there could be some sort of pneumococcal growth, as well as at least one nodule that has continued to grow. The Sutent is not 'not working', but it is not working to the degree that it needs to be. With many kinds of chemo, when it is not working, it is in the best interests of the patient to take them off of it. That is not the case with this kind of chemo. Sutent is a chemo that creates a kind of wall between the cancer and its ability to receive oxygen and grow. On the other side of the wall, it is possible for the blocked effects to begin to back up and build, so that if you were to abruptly remove the 'wall', it could advance with greater force, causing the cancer to have a big growth spurt of sorts. There are other types of this same chemo I could try, but right now UCSF and a manufacturer are at the end of a phase of a trial that the doctor would like me to look into that might provide a better attack. It would involve taking a different form of this same type of chemo, but simultaneously taking a second form of a different type of chemo that attacks kidney cancer in another way. If the doctor running the trial, and her team, which includes my doctor, feels that I am a good fit for this, it would put me in the second phase of this trial, which is to see how this combination attacks kidney cancer. This second drug is FDA approved, and the patients in the first phase have participated to see what is the highest level of this chemo that can be taken with the other one, with the lowest bad side effects. I have a lot of respect for those patients.
Since there are still some administrative things going on with phase one of the trial, I will go on one more round of Sutent starting Thursday night, then meet with Dr. Ryan in six weeks to make some decisions as to what is next. I will hear from the doctor who heads up the trial in the next few days, to learn more and have many questions answered.
Matt and I have sat in many doctor's offices over the past year, and we have heard many different things that have changed our lives in ways we would have never dreamed of. My attitude has always been that I just need to know what you want me to do and I will do it. I'm ready to fight, and I'm in it for the long haul. But today hurt, and for the first time, I cried on the way home. Then as I listened on my iPod to a Michael W. Smith song, I was struck by these words:
"And even now that I'm inside your hands
Help me not to grow prideful again
Don't let me forsake sacrifice
Jesus, You be lifted high
And if I'm blessed with the riches of kings
How could I ever think that it was me
For You brought me from darkness to light
Jesus, You be lifted high"
For the first time, it was as if I was hearing God tell me to get out of the way and let Him. Whatever happens, whatever the fight, whatever the course of action, do my part, but leave the rest to Him. He will take care of the long haul, whatever it may be, and in the end I just need to fall to my knees so it's Him that you see, not me.
Help me hold true to that, my friends. Continue to pray for my family, and especially my husband. Take the time to ask him how HE is doing, not how I am doing. I would appreciate that. I love you all.
Danene
September 14, 2009
Thursday, September 3, 2009
I'm Singing
Hi, Friends,
Round Seven is over! It felt good knowing I did not have to take a pill tonight. It's been a tough week. Last Friday I ended up missing school and went to the doctor instead. I had a sinus infection (am taking penicillin but am doing much better), and that dreaded cough from the year before returned, so the doctor changed the type of inhaler I am using to one that is longer lasting and more preventative. It finally feels like it might be working as I am not coughing quite as often, but still deeply. The end of the meds hit hard with tiredness, pretty bad spots on my thumbs and one of my fingers, bruises appearing out of nowhere, and spots of hair thinning and breaking. So I get a two week break to recover, have a blood test, and find out just what good the medicine is doing with another set of scans. It's hard not to get anxious around this time, wondering about the unknown.
Kari Jobe is a favorite singer of mine. She has the most pure and beautiful voice and can make a song touch your soul. She sings a song called 'I'm Singing", about singing to the God who brings redemption to the nations; the One who wrote the book on our salvation; who covers us in grace. I'm singing praise to the One who wrote the lines of my life. I'm singing about things like a husband who has stood by me through more than he ever thought he would have to this past year. I'm sure he would like to not hear anything about cancer for a day or two from me or anyone else. But, nonetheless, he hears about it daily in some form or reminder or so. When I woke him up just 15 minutes before the alarm was to go off this morning, and asked him to pray for the muscles in my abdomen that were spasming from the coughing, he rolled over, put his hands on me, and began praying to the One we know listens to the cries of our hearts. And as he prayed, I began to relax and felt the pain slowly begin to slip from my body. There are many times in our lives that we feel far from being in the singing mood. Perhaps those are the times we most need to find reasons to sing. What are you singing about today? I'm sure there is something that you can find to sing praises about to the One who has done so much for you.
Sing!
Danene
September 3, 2009
Round Seven is over! It felt good knowing I did not have to take a pill tonight. It's been a tough week. Last Friday I ended up missing school and went to the doctor instead. I had a sinus infection (am taking penicillin but am doing much better), and that dreaded cough from the year before returned, so the doctor changed the type of inhaler I am using to one that is longer lasting and more preventative. It finally feels like it might be working as I am not coughing quite as often, but still deeply. The end of the meds hit hard with tiredness, pretty bad spots on my thumbs and one of my fingers, bruises appearing out of nowhere, and spots of hair thinning and breaking. So I get a two week break to recover, have a blood test, and find out just what good the medicine is doing with another set of scans. It's hard not to get anxious around this time, wondering about the unknown.
Kari Jobe is a favorite singer of mine. She has the most pure and beautiful voice and can make a song touch your soul. She sings a song called 'I'm Singing", about singing to the God who brings redemption to the nations; the One who wrote the book on our salvation; who covers us in grace. I'm singing praise to the One who wrote the lines of my life. I'm singing about things like a husband who has stood by me through more than he ever thought he would have to this past year. I'm sure he would like to not hear anything about cancer for a day or two from me or anyone else. But, nonetheless, he hears about it daily in some form or reminder or so. When I woke him up just 15 minutes before the alarm was to go off this morning, and asked him to pray for the muscles in my abdomen that were spasming from the coughing, he rolled over, put his hands on me, and began praying to the One we know listens to the cries of our hearts. And as he prayed, I began to relax and felt the pain slowly begin to slip from my body. There are many times in our lives that we feel far from being in the singing mood. Perhaps those are the times we most need to find reasons to sing. What are you singing about today? I'm sure there is something that you can find to sing praises about to the One who has done so much for you.
Sing!
Danene
September 3, 2009
Subscribe to:
Posts (Atom)
Posts
