I haven't had to write a blog post like this for a while. Since November of 2009, actually. A blog post in which we report something other than good news.
We returned a couple of hours ago from Dan's follow-up with the oncologist (Dr. S). Unfortunately, the CT results were rather difficult to interpret. A few things were clear:
1. There was some shrinkage of the ablated area in the R lobe of the liver (good)
2. There are some shady areas in the liver and R lung that could be either post-treatment changes or new tumor growth (could go either way)
3. There are 2 enlarged lymph nodes that have not been seen on CTs before. One is in the chest by the lungs and the other is down closer to the diaphragm and intestines. (bad)
If all the questionable areas are just Dan's body recovering from the ablations and infection last summer, we just have wait and keep a close eye on it. However, if any of them do represent new tumor growth...well, that's a whole different story.
The only way to tell the difference is to biopsy the areas that are suspicious and see what's there. The most disconcerting areas at this point are the lymph nodes as that is a very common first site of spreading disease. So far, Dan has not really had much cancer growth in his lymph nodes. They actually removed several nodes during his Whipple and found no evidence of cancer at all. Thus, seeing these new lymph node swellings is not promising.
The oncologist was quick to get to action and called one of the interventional radiologists (IR) at our hospital to re-read the CT scan. The IR doc who looked it over said one of the lymph nodes is too close to the intestine to biopsy safely and that he wants some more information before he biopsies the other lymph node or the problem area of the liver.
Dan will be having a PET scan next week to see what (if any) of the areas are active "hot spots", meaning if any of them are metabolically active and growing. With that information, the IR doctor will be able to take a biopsy of the most active spot. We'll meet with Dr. S in 2 weeks to discuss the PET results and the next steps.
While Dan and I are trying to be calm and hopeful and optimistic about these findings being inconclusive or just inflammatory, we are also having to be realistic. Dr. S stated today that if Dan's cancer has returned, he would most likely send us back to Stanford to meet with Dan's original oncology team for options. Chemo would most likely be the first step, though other radiation or treatments could be discussed. My favorite line today was when Dr. S said that he wanted Dan to get the same treatment as all the billionaires (Swayze, Jobs, etc) going to Stanford--and he'd try to make that happen.
In being completely honest, recurrence has always been a possibility. The whipple got most of the cancer, but the surgeon had to leave some of the dead tumors in the liver. The ablations should have taken care of most of the liver tumors and insured their deadness. Yet, micro-tumors are very difficult to target without systemic treatment (chemo). Dan's last chemo treatment was in April of 2008, so the tumors have a long time to do a little sharing elsewhere in the body.
All of us (including the doctors) have been hoping that Dan's cancer is dead and that the spots we see are just dead tissue. That is still possible, but the oncologist made it fairly clear today that the enlarged lymph nodes are directing us away from that possibility.
So, what now? We wait for the PET scan results and then wait for the biopsy results. We probably won't have a plan of attack until the end of next month in all reality. Until then, we are praying and trying not to go into panic mode (as if Dan could ever be in panic mode!).
We are also going ahead with our plans to see the fertility specialist. Some may see this as unwise giving the current situation, but if Dan does have more chemo, we may lose any chance to have children of our own. Also, we do not know the future and want to live in the present. We are both anxious to begin a family and are not going to let the new "what ifs" get in the way of our plans. Trying to have a baby in the midst of this is our way of remaining hopeful and trusting God--the only One who knows the number of our days.
As for how we are doing emotionally, we're okay. I cried a little, switched into nurse mode and tried to educate Dan on what Dr. S meant, started dinner, vacuumed and filed. (I process bad news by staying busy--so I guess we could thank Dr. S for the clean house we are now enjoying!)
Dan took it all in, asked questions, interfaced with our parents and prayed with me. He is still as optimistic and calm as ever. We're okay.
Please join us in prayer. We need it. Thanks.
Prayer Requests:
1. More conclusive results from the PET scan (disappearance of tumor activity would be great!)
2. Wisdom for the doctors.
3. Ease of scheduling for appointments and procedures
4. No cancer cells to be seen in any biopsy results
5. Peace and hope for both of us and our families
6. An encouraging meeting with the fertility specialist
7. PRAY FOR REMISSION IN THE NEAR FUTURE
8. God's healing hand to touch Dan
Loving each other while standing on the Rock!
Wednesday, February 22, 2012
Wednesday, February 15, 2012
Restless hearts
No, this is not a post-Valentine's Day let-down blog.
(I actually had an amazing Valentine's Day! I worked, so we couldn't go out to celebrate or anything. BUT Dan had plans for the day. I came home to a house full of good-smelling candles everywhere, French toast cooking in the kitchen, chocolates on the table (from Dan's classes) and the most beautiful bouquet of red and white tulips waiting in the bedroom. We sat in our PJs, ate dinner by candlelight, exchanged love letters, and snuggled. I mean honestly. It boggles my mind that this guy loves me like he does.)
On to the real purpose of this entry: my own restless heart. I am not restless out of unrequited love or disappointment. My heart is restless out of fear and worry. This is the opposite of what God has called me to be. I have always been a self-proclaimed worrier, but I really need to work on this sinful part of my character. Yes, worrying is sinful. God knows all and loves me perfectly. Worrying says I do not trust God or think Him big enough to handle my life. Yikes.
God reminded me of this today during devotions. I read Streams in the Desert everyday, and today's writing hit home. Here's an excerpt--a poem by Edith Willis Linn:
Awesome. What do I need to do? Trust, love, hope, rest and pray. That's it.
Instead of thinking that Dan's oncologist won't speak to me at work because Dan's CT was bad, perhaps the doctor is just busy! (duh)
Instead of imagining that Dan and I are in incredibly in love because we won't have a long marriage to enjoy it, maybe we are just blessed with an amazing love story!
Instead of dwelling on the "what ifs", maybe I should just praise Him for what I have now.
Instead of waiting for the other shoe to drop, perhaps I should just keep walking on the path God has us on.
Oh, Lord help me to trust you more and more.
(I actually had an amazing Valentine's Day! I worked, so we couldn't go out to celebrate or anything. BUT Dan had plans for the day. I came home to a house full of good-smelling candles everywhere, French toast cooking in the kitchen, chocolates on the table (from Dan's classes) and the most beautiful bouquet of red and white tulips waiting in the bedroom. We sat in our PJs, ate dinner by candlelight, exchanged love letters, and snuggled. I mean honestly. It boggles my mind that this guy loves me like he does.)
On to the real purpose of this entry: my own restless heart. I am not restless out of unrequited love or disappointment. My heart is restless out of fear and worry. This is the opposite of what God has called me to be. I have always been a self-proclaimed worrier, but I really need to work on this sinful part of my character. Yes, worrying is sinful. God knows all and loves me perfectly. Worrying says I do not trust God or think Him big enough to handle my life. Yikes.
God reminded me of this today during devotions. I read Streams in the Desert everyday, and today's writing hit home. Here's an excerpt--a poem by Edith Willis Linn:
Dear restless heart, be still; don’t fret and worry so;
God has a thousand ways His love and help to show;
Just trust, and trust, and trust, until His will you know.
Dear restless heart, be still, for peace is God’s own smile,
His love can every wrong and sorrow reconcile;
Just love, and love, and love, and calmly wait awhile.
Dear restless heart, be brave; don’t moan and sorrow so,
He hath a meaning kind in chilly winds that blow;
Just hope, and hope, and hope, until you braver grow.
Dear restless heart, repose upon His breast this hour,
His grace is strength and life, His love is bloom and flower;
Just rest, and rest, and rest, within His tender power.
Dear restless heart, be still! Don’t struggle to be free;
God’s life is in your life, from Him you may not flee;
Just pray, and pray, and pray, till you have faith to see.Awesome. What do I need to do? Trust, love, hope, rest and pray. That's it.
Instead of thinking that Dan's oncologist won't speak to me at work because Dan's CT was bad, perhaps the doctor is just busy! (duh)
Instead of imagining that Dan and I are in incredibly in love because we won't have a long marriage to enjoy it, maybe we are just blessed with an amazing love story!
Instead of dwelling on the "what ifs", maybe I should just praise Him for what I have now.
Instead of waiting for the other shoe to drop, perhaps I should just keep walking on the path God has us on.
Oh, Lord help me to trust you more and more.
Friday, February 10, 2012
To our army of supporters :)
Well, the last time we updated anyone on here was almost 7 months ago. Oops. Life got busier and other things took priority over blogging...well, everything takes priority over blogging in my mind!
However, we acknowledge that there is a small army out there that loves us and takes time to pray for us and deserve to know what is going in our lives. Accordingly, I am going to TRY to jump back into this endeavor. Here goes...
Dan got out of the hospital after 5 days in July for the post-ablation abscess, went home with PICC line number 4 and a month of IV antibiotics given by his home health nurse: moi. He spent another 3 months on oral antibiotics. Yikes. He is still following up with the infectious disease doctor to monitor his infection/inflammatory status, though he is finally off of antibiotics.
Since I have a job with incredible insurance, we switched oncologists to one covered by said incredible insurance. I work with this oncologist all the time at the hospital, so it was easy to make the decision. He is compassionate, intelligent and very humble. Humility in MD terms means being able to admit not knowing something and calling someone who does know. He has already told us that he has the nation's leading neuroendocrine expert attached to Dan's file in case he needs treatment options. Good to know, though we hope he never has to make that call!
As far the status of Dan's cancer, we've been in the longest "watch and see" phase of this journey. Dan thinks this is awesome; I think this is scary. The scary factor is increasing daily by the fact that Dan will be having a CT on Monday (Feb 13th). We'll meet with his oncologist a week after that to hear the news. God willing, the news will be "nothing new". Dan is expecting nothing different. I hope he's right. Please pray that we get EXCELLENT news from the oncologist.
In other news, by the end of the week, Dan and I will be officially free of college loans! Woohoo! Now, we can start saving our money toward other things. What are these "other things" you may ask? A down-payment on a house (in a few years), a new car (when ours eventually die), and babies.
Yes, I said it. Babies.
No, I am not pregnant. Not right now, but not for lack of trying.
We've been hesitant to discuss this issue in our lives because it seems trivial or too personal. Also, it hurts to talk about. Yet, in blogging about our lives and Dan's battle with cancer, this is something integral.
4 and a half years ago, Dan was fighting for his life after receiving a terrible diagnosis. I told God that I would be happy to have to worry about infertility because that would mean Dan at least survived. Years of prayer and medical treatments and surgeries have allowed for Dan to be healthy and thriving. There is always the fear of the cancer returning, but we choose (most days) to live in the blessing of the present. I daily praise God that my husband is alive. This is a miracle.
A while ago, Dan and I decided to start trying to have children. This in effect simply meant not trying to not have children. We have both seen doctors who have given us some 'prognosis' of our chances. Dan's chemo has hindered his fertility. I will spare the world the details, but suffice it to say: less than normal but not zero. Right now, we are working with the thought that conceiving a baby on our own is possible but not very likely. We both knew this was a reality of cancer treatments.
With every drop of Taxol or Carboplatin, Dan stepped closer to surviving and stepped further from being a father. I cannot imagine my life without him and pray that I will never have to find out. However, we are now living with a different and biting kind of grief. We may never be parents.
As we watch our friends have babies or see pictures of ultrasounds on Facebook, sadness always mixes with our excitement for them. There is a box of pregnancy tests in my drawer that I'll probably never need. There are 49er pacifiers in Dan's closet that will probably never be opened. We may never have onesies or baby socks in our laundry pile. We may never know the exhaustion of sleepless nights with an infant. We may never get to hear our parents argue about which side of the family the baby looks like.
I apologize if this sounds like a pity party. That is not my intention. We just want our loved ones to know this is our reality right now. Dan and I are blessed immeasurably with jobs and relative health and amazing families and a wonderful church...and love. I mean, we are seriously still head-over-heels in love with each other. Man, I got a good one!
All that being said, we are hurting. Hopeful, but hurting.
This doesn't mean we don't want to hear your good news or that I won't try to borrow your babies for a cuddle-fest. This also doesn't mean that you can't ask us about it. Good grief, every day we hear someone ask us why we're taking so long to start a family. It's okay. Just know that you might win the lottery and end up with me sobbing on your shoulder as I tell you why we don't have a baby yet. I don't mind if you don't mind!
We have been waiting for loans to be paid off and for Dan's next CT scan before making an appointment with a fertility doctor. By the end of the month, both of these things will be done. So, expect an update of some sort in the next month or so.
(For those of you concerned that we are not mentioning adoption--we're not against it AT ALL. There are, however, some major hurdles to jump over because of Dan's health history. I'll write about this another day.)
We don't want this to be a burden of knowledge on our friends or family. But, we do need your support. We need prayer! God has never promised to give us children, but that doesn't mean He won't. Please join us in prayer as we press onward in this new journey together. Prayer for God to intervene and allow a natural pregnancy so we don't have to take out more loans for fertility treatments (Insurance covers abortions but now fertility treatments. Sad). Prayer for peace and contentment with our blessings. Prayer for wise doctors and good advice. Prayer that this will drive Dan and I closer together in love and commitment.
Alright, that's enough for now. If you read this far--thank you. It feels good to not be so alone in this. We love you and will try to be better 'pen pals' in the near future!
However, we acknowledge that there is a small army out there that loves us and takes time to pray for us and deserve to know what is going in our lives. Accordingly, I am going to TRY to jump back into this endeavor. Here goes...
Dan got out of the hospital after 5 days in July for the post-ablation abscess, went home with PICC line number 4 and a month of IV antibiotics given by his home health nurse: moi. He spent another 3 months on oral antibiotics. Yikes. He is still following up with the infectious disease doctor to monitor his infection/inflammatory status, though he is finally off of antibiotics.
Since I have a job with incredible insurance, we switched oncologists to one covered by said incredible insurance. I work with this oncologist all the time at the hospital, so it was easy to make the decision. He is compassionate, intelligent and very humble. Humility in MD terms means being able to admit not knowing something and calling someone who does know. He has already told us that he has the nation's leading neuroendocrine expert attached to Dan's file in case he needs treatment options. Good to know, though we hope he never has to make that call!
As far the status of Dan's cancer, we've been in the longest "watch and see" phase of this journey. Dan thinks this is awesome; I think this is scary. The scary factor is increasing daily by the fact that Dan will be having a CT on Monday (Feb 13th). We'll meet with his oncologist a week after that to hear the news. God willing, the news will be "nothing new". Dan is expecting nothing different. I hope he's right. Please pray that we get EXCELLENT news from the oncologist.
In other news, by the end of the week, Dan and I will be officially free of college loans! Woohoo! Now, we can start saving our money toward other things. What are these "other things" you may ask? A down-payment on a house (in a few years), a new car (when ours eventually die), and babies.
Yes, I said it. Babies.
No, I am not pregnant. Not right now, but not for lack of trying.
We've been hesitant to discuss this issue in our lives because it seems trivial or too personal. Also, it hurts to talk about. Yet, in blogging about our lives and Dan's battle with cancer, this is something integral.
4 and a half years ago, Dan was fighting for his life after receiving a terrible diagnosis. I told God that I would be happy to have to worry about infertility because that would mean Dan at least survived. Years of prayer and medical treatments and surgeries have allowed for Dan to be healthy and thriving. There is always the fear of the cancer returning, but we choose (most days) to live in the blessing of the present. I daily praise God that my husband is alive. This is a miracle.
A while ago, Dan and I decided to start trying to have children. This in effect simply meant not trying to not have children. We have both seen doctors who have given us some 'prognosis' of our chances. Dan's chemo has hindered his fertility. I will spare the world the details, but suffice it to say: less than normal but not zero. Right now, we are working with the thought that conceiving a baby on our own is possible but not very likely. We both knew this was a reality of cancer treatments.
With every drop of Taxol or Carboplatin, Dan stepped closer to surviving and stepped further from being a father. I cannot imagine my life without him and pray that I will never have to find out. However, we are now living with a different and biting kind of grief. We may never be parents.
As we watch our friends have babies or see pictures of ultrasounds on Facebook, sadness always mixes with our excitement for them. There is a box of pregnancy tests in my drawer that I'll probably never need. There are 49er pacifiers in Dan's closet that will probably never be opened. We may never have onesies or baby socks in our laundry pile. We may never know the exhaustion of sleepless nights with an infant. We may never get to hear our parents argue about which side of the family the baby looks like.
I apologize if this sounds like a pity party. That is not my intention. We just want our loved ones to know this is our reality right now. Dan and I are blessed immeasurably with jobs and relative health and amazing families and a wonderful church...and love. I mean, we are seriously still head-over-heels in love with each other. Man, I got a good one!
All that being said, we are hurting. Hopeful, but hurting.
This doesn't mean we don't want to hear your good news or that I won't try to borrow your babies for a cuddle-fest. This also doesn't mean that you can't ask us about it. Good grief, every day we hear someone ask us why we're taking so long to start a family. It's okay. Just know that you might win the lottery and end up with me sobbing on your shoulder as I tell you why we don't have a baby yet. I don't mind if you don't mind!
We have been waiting for loans to be paid off and for Dan's next CT scan before making an appointment with a fertility doctor. By the end of the month, both of these things will be done. So, expect an update of some sort in the next month or so.
(For those of you concerned that we are not mentioning adoption--we're not against it AT ALL. There are, however, some major hurdles to jump over because of Dan's health history. I'll write about this another day.)
We don't want this to be a burden of knowledge on our friends or family. But, we do need your support. We need prayer! God has never promised to give us children, but that doesn't mean He won't. Please join us in prayer as we press onward in this new journey together. Prayer for God to intervene and allow a natural pregnancy so we don't have to take out more loans for fertility treatments (Insurance covers abortions but now fertility treatments. Sad). Prayer for peace and contentment with our blessings. Prayer for wise doctors and good advice. Prayer that this will drive Dan and I closer together in love and commitment.
Alright, that's enough for now. If you read this far--thank you. It feels good to not be so alone in this. We love you and will try to be better 'pen pals' in the near future!
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