Well here we are into Day 4 of recovery and we're thankful for the healing Steve's experienced.    He's been weaned off nearly all the tubes that assisted during surgery and now is focusing his attention on getting his strength back. It's a day and night process so he's pretty tired.

A special thank you to all of his students and friends at Norton Creek School for the wonderful box of cards that encouraged him and brightened up his day. He's hoping to be able to get to school  to see all of you before summer vacation. 

 Thanks to the doctors and nurses whose gifts have helped him in the most practical ways through these difficult days, and to everyone who has prayed for him and encouraged him on this journey,,,words can't adequately express what it's meant to all of us.

Good morning! A new day is dawning!

Steve thanks you for all your posts and well wishes (I've read them all to him)  He was able to get some sleep last night and is now playing catch up with the pain medication!  He isn't ready for visitors.  He will post when he settles in to the new "normal."  Thank you again for your prayers and encouragement.

Here we are at the end of a long good day!

When this day started Stephen and I were not thinking surgery.  We knew it was a possibility but were hopeful, actually I felt confident, that with a little more time, things would be resolved and we wouldn't be pressed into making a decision about surgery because afterall we had radiation treatments to get ready for and Steve had a conference to go to on Saturday.  So when the surgeon came in and announced to Steve that the xray showed that there had been no improvement and that he wanted to do surgery today, this morning, now !Steve wasn't ready, and I was on my way to the hospital, my arms full of computers, and knitting supplies and books to share the day of waiting with Steve. I definitely did not want to think about  surgery.  We both felt swept along heading where neither of us wanted to go. Things clearly were out of control!

Dr. Altimari's cheerful confidence  was in stark contrast to how we were feeling. Around every corner we met people who were compassionate and  sympathetic about all Steve's been through--and while the conscensus was that he is too young to be dealing with all this, nevertheless in no time at all Steve was listed as an "add-on" to the surgery schedule, IV lines were put in and blood was drawn.  Then he was gone and I made my way to the surgery waiting area wondering how this day had gotten so out of hand!

Three hours later Dr. Altimari came down the hall to the consultation room relaxed and smiling.  Everything he had hope to do had been done.  He was very pleased with how things had gone and confident that Steve was going to be too.

Stephen's resting quietly now, pain is being managed and healing is underway.  Healing that will be benefit him in the near future and in the days, months, years ahead.

Thankyou Dr. Altimari, nurses, patient care coordinator, family, friends for taking the lead in making this hard decision for this day.  Thanks for the compassion and understanding and for holding us on course for healthier days ahead. 

What Stephen and I dreaded alot is done and healing is happening.  We're very thankful for everyone who helped us through this day and for God Who was today, and will be tomorrow, our Refuge and Strength, our ever-present Help in trouble.

Next update, Stephen will speak for himself!

Thanks for everything. 

Bev

Some bad news and tough decisions to come...

After my first surgery in 2008, I developed two hernias in areas that were weakened by the surgery. One of the hernias is quite large and complicated. I have spent the last year looking into ways to repair it effectively and safely. It has sent me to doctors in Cleveland and Boston. Both suggested that if I lost weight I would have the best chance of the repair lasting. Since last July, I have lost about 60 pounds, but was planning to wait another year until I had lost it all. The hernia has been annoying at times, but it has not caused me serious problems until now.

When I began taking pain medication, I became more constipated and my hernia began changing. It was getting progressively larger and my attempts to manage it has been less productive. On Tuesday, I began vomiting. My doctor put me on a stronger medicine hoping to clear things out. After some small progress, I began vomiting again on Wednesday. On my doctor's advice, my mom took me to the ER, and I was admitted to CDH last night.

X-rays and a CT scan show that I have a bowel obstruction, which was caused by the pain medication and the hernia. They put in a very uncomfortable NG tube, which helped deal with my nausea, but so far the obstruction has not cleared. The surgeon at CDH, who I don't know anything about, but seems confident, wants to do another X-ray in the morning. He said that if it hasn't cleared by then, that he thinks it will be time to do surgery, because the longer it stays obstructed the more dangerous it gets.

Prior to this development, I learned that there is a piece of bowel near the tumor, which means that the more optimistic plan wouldn't be possible. I was going to begin five weeks of radiation and chemo on Monday. Now that is on hold until this problem is resolved.

Please pray for The Lord to heal my obstruction tonight, as it is a surgery with lots of risks of complications. Also, any delay in the treatment of my tumor leaves me in severe pain and at risk of it continuing to grow and eventually spread. In addition, having surgery means I will be out of work and graduate school a lot longer and this could have a wide range of learning and financial implications.

Needless to say, this has been a really tough couple of days, and I have some hard days ahead. Please pray for me, my family and the doctor to make the right decisions. Pray that I will trust His Plan, even if it seems like a hard road to walk.

A glimmer of hope

A picture my mom sent me this morning, with the subject: this new day.

As you can probably imagine it's been a long couple of days. I haven't been sleeping very well and I've sort of known for two weeks that my cancer has been back, even without the completed MRIs. Honestly, I've been feeling pretty hopeless. I saw my future as never ending cycles of chemotherapy. Chemo was really tough for me last time, and I wasn't looking forward to it. I was ready to do what needed to be done, but I saw little reason for optimism. That changed today, and a glimmer of hope was rekindled for me.

I shouldn't have been surprised, though. In 2008, I woke up from my surgery to discover that the cancer was in a more difficult place than they thought and that I would be dealing with the results of that for the rest of my life. In addition, I had waited a long time to get checked out, and everyone assumed that my cancer was pretty far along. A few days later, I found out that all 19 of my lymph nodes were negative for cancer. My tumor was considered stage 1 and I wouldn't need chemotherapy. I had been given a reprieve when all had seemed lost.

Two years ago, I found out that in fact my cancer had spread to my lung. My doctor told me that surgery was not a good option for me and that the best plan was chemo and radiation. I knew that this meant the cancer would never be completely gone, because surgery wasn't the only "curative" option. I started my first round of chemo, and when it landed me in the hospital coughing up blood, I hit rock bottom.

In the morning, the radiation oncologist at CDH, Dr. Kesslering, came into see whether beginning radiation immediately might be the best plan. She immediately expressed her confidence that she could stop the bleeding and shrink the tumor with radiation. Then she said something I will never forget, "But I don't understand why you're not having surgery." She went out of her way to take charge of my case. She brought my case to a group of doctors and surgeons at CDH and started me down a path that led me to having my tumor removed successfully at Rush. It was that question that turned my perspective and gave me hope.

Now, I am faced with the reality that the cancer has come back again. I can't fool myself that there is a curative option. A lot of you have called me brave, but it's more a sense of realism that led me to accept the situation. I'm realistic, but I was also essentially without hope. A friend told me, "I just know you'll get good news on Tuesday." I appreciated the sentiment, but I couldn't fool myself into agreeing. Of course, she was wrong; the good news came a lot quicker.

Yesterday, the instant my oncologist realized that the MRI revealed a tumor on my spine, he said, "I'm going to refer you to Dr. Kesslering." I didn't even have to bring her up. Today, I called to set up an appointment and the receptionist said, "Oh, we went ahead and made you an appointment for today." At that point (actually sooner), I should have seen the Lord's fingerprints and known what was coming, but I didn't.

Here's the glimmer of hope that I found today. First, I had a CT scan last night and no other tumors were found. Assuming that tomorrow's bone scan comes back clear, Dr. Kesslering thinks that I should have two weeks of intensive radiation focused on killing the tumor on my spine. In consultation with Dr. George, my medical oncologist, they are thinking that I might not even need chemo. The hope is that if they can treat this tumor locally and then track me carefully, I could possibly have another long stretch of being cancer free.

I can't express fully how much this has changed my perspective, and given me hope. In the past, I think I interpreted these moments of hope as being about the cancer never coming back. I acted like that meant that I could move on and pretend like it never happened. I wasted those times of being healthy and cancer free. I don't believe that was why God was giving me these reprieves.

Now that I know that there is no permanent cure coming, I think I can live more purposefully and without squandering the time He has given me. This has turned out to be a really long post, but I felt compelled to share the glimmer of hope that the Lord gave me today.

Thank you for all the notes of support and your prayers. They mean so much to me.

Another journey

I've never been a great blogger, so I'm not sure who is regularly checking this site. I always relish not needing to update you on how I am doing in this way. However, I do have some news that I need to share.

Over the past few months, I have been having back pain that has been progressively worsening. The last couple of weeks it has become quite severe. I recently had an MRI of my back and they found a 5 cm x 6 cm mass on my sacrum spine. My doctor has ordered some additional tests to see if there are any other areas of concern. On Tuesday, I will see the doctor again to talk about the next steps in this process.

While we have yet to do a biopsy to confirm that this is cancer, all signs point that way. The good news is that my cancer has seemed to move rather slowly. It was three and half years between my original surgery and when they found the lung metastasis. That was almost two years ago, now. The tumors markers in my blood are rising for the first time ever, but I am hopeful that we can keep it at bay for a long time.

I have appreciated your support and prayers over the last five years. I need them again, and I am blessed to have such great friend and family. I will keep you updated as I learn more about where the Lord is leading me on this journey. I know that this is part of the Lord’s plan for my life. He is faithful, even when we can’t always see what His purposes are.

Steve