Meeting With the Doctors at Yale

All in all, I think it was good day. We first met with Dr. Detterbeck. Charles and Melissa were able to be there as well. Dr. Detterbeck basically told us that, after looking at my latest scans and reports, he felt that surgery was no longer an option. Unfortunately, the fluid in my left lung cavity and the size of some of the tumors have made surgery a no-go. He said the goal now is to try to stabilize and control the disease for as long as possible with chemo and other drugs. That being said, he asked if we would be interested in speaking to one of the oncologists there. He and Charles had already spoken to this oncologist regarding my case, and he said he would be willing to speak to us about some specific options. I was glad for the opportunity to talk specifics. I was so impressed with this doctor. He had such a gentle demeanor and was very approachable. His name is Dr. Deshpande. He went over my chemo and clinical trial history with me, discussing what has worked and what hasn't worked in the past. The chemo that worked the best was the first chemo regimen I tried about a year and a half ago - Adrimiacin (sp). It pretty much wiped out the tumors I had at the time. The problem with Adrimiacin is there is a limit one can have in a lifetime without causing heart problems. I have had my limit. However, Dr. D told me of a drug they can administer with the Adriamiacin that will protect the heart. This drug will lessen the effect of the Adrimiacin on the tumors somewhat, but we think the response would still be worth it. In addition, Dr. D is going to check on a new drug for sarcoma that has been approved by the FDA, but hasn't been released yet. This drug has shown decent results for those with high-grade sarcoma metastases to the lungs. He is going to call my oncologist at Roswell to discuss these options and see if they can work together to get me started. First things first, though. I have to get rid of the remainder of the fluid in my left lung cavity. That should happen sometime next week at Roswell. They're setting up an appointment to drain the fluid and have a catheter put in so that I can drain it myself if the fluid continues to build up. I've been told that I might have to keep the catheter in for a few months until the drainage stops completely. No big deal - it won't interfere with any of my normal activities.

I have to admit that after talking with Dr. Detterbeck, I felt a little down. But, I'm so glad he had the foresight to have us talk with Dr. D. Dr. D. gave us a game plan to follow and a commitment to assist in helping to implement it.

I've had to change my mindset. I am not going to be cancer-free. However, I intend to use all resources at my disposal to control this disease for as long as possible. I left the hospital with a ray of hope today. Anyone dealing with cancer knows a little bit of hope can go a long way!

Yale, here we come . . .

Charles called this morning. Dr. Detterbeck feels that surgery is not an option at this time because of the tumor growth that has taken place over the last 2 months or so. However, he would still like to talk to us regarding my options. Charles seems to feel that if we can shrink some of the larger tumors with chemo or other drugs, surgery may yet be an option in the future. In the meantime, I'm grateful that Dr. Detterbeck would like to meet with us. It will be interesting to get his take on things.

Thanks to all of you for your support and prayers. I'm doing well in spite of the craziness! You know the poem, "Footprints in the Sand"? If you look behind me, I'm sure there's only one set of footprints . . .

Some news . . .

After requesting that Roswell fax my medical records and reports to Yale and Memorial Sloan Kettering, I received word from Memorial Sloan Kettering that they have determined that I would not be a surgical candidate. I didn't ask why. I wasn't particularly surprised. Roswell feels the same way. However, it makes me wonder if things have progressed to the point where Yale will ultimately come to the same conclusion. Charles and Dr. Detterbeck will be looking at my scans and reports this weekend and will be calling us Monday to let us know. We have a tentative appointment to meet with Dr. Detterbeck this coming Wednesday. We'll see if that happens. In the meantime, I'm looking forward to a relaxing weekend. The last few days have been crazy and have taken their toll both physically and emotionally. I need to re-fuel and so does my sweet husband. I honestly don't know how spouses of cancer patients do it. There are times when I feel this is harder on him than it is on me.

It's all in the Lord's hands. Knowing that gives me a tremendous amount of comfort and peace.

Just waiting to hear . . .

We're just waiting to hear back from Yale and Sloan Kettering as to when we can go for consults.  I had Roswell fax all of my pertinent info to both facilities.  In the meantime, I'm breathing a bit better.  The pain is gone - yay!  But, I do have a little bit of a cough.  No biggie.  I went into work yesterday for a few hours, did some laundry when I got home.  All in all, it was a good day.  Today, I'll go into work again for a few hours.  I love that I'm able to do that.  It gives me a sense of normalcy.  The people I work for and with are phenomenal. I could not ask for better.

Also, I have to mention my family.  My husband, my children and their families, my mom, dad and stepmom, my brothers and sister, and all of my extended family - they are my strength.

So that's it for now.  I'm hopeful we'll hear something today or tomorrow and be able to make plans to drive up north.

Things are getting a little crazy . . .

First of all, thanks to my sister for setting this up for me.  It will be much easier for me to just put posts up periodically to keep everyone apprised of my newest health updates.

My latest treatment, a clinical trial, did not work out as we had hoped. It turned out I was very allergic to one of the drugs used in the trial.  Since then, I have had a strong impression that we should revisit the idea of surgery to remove the tumors in my lungs.  I was reluctant to go that route in the past as I knew it would be major surgery, and the thoracic surgeon here at Roswell was encouraging me to continue with a systemic approach (chemo, clinical trials) to see if we could first stabilize the disease in my lungs.  It's been a year and a half and not only am I tired of the side effects and allergic reactions, nothing has really worked as we had hoped.  The tumors are growing.  

We went up to visit our daughter, Melissa, and her husband, Charles, in New Haven, CT a few weekends ago.  For those of you who don't know, Charles is a heart surgeon and is doing a 2 year fellowship at Yale Hospital up there.  He just happens to be doing a thoracic rotation right now.  He has been working with Dr. Frank Detterbeck who is the Chief of Thoracic Surgery at Yale.  Dr. Detterbeck happens to have a special interest in sarcoma.  Charles asked me to bring a copy of my most recent CT scan with me so he and Dr. Detterbeck could take a look at it.  Before they had a chance to look at my scan, Charles felt very impressed to tell me that he felt strongly that surgery was my best option.  Those feelings were confirmed when he had a chance to look at my scan.  In turn, my feelings about surgery were also confirmed.  I knew that was what needed to happen.  So, we made an appointment to meet with the thoracic surgeon at Roswell to discuss the idea of surgery to remove the tumors.  Somehow, I just had a feeling it wasn't going to be an easy process.  Sure enough, about 10 days ago, I started to have trouble breathing.  I was a bit short of breath, wheezing a little and developing a cough.  I assumed I was finally beginning to feel the effects of the tumors in my lungs.  So, I just slowed down my activity some thinking it would be fine until I met with the surgeon.  Unfortunately, the symptoms got worse.  I went down to Roswell, and they did a chest x-ray to see what was going on.  It showed a bunch of fluid in the lung cavity between the lung and the chest wall.  They said it wasn't uncommon for patients with cancer in their lungs to experience this. They did a thoracentesis that day and drew almost 2 liters of fluid out of my lung cavity!  I was told that I would feel immediate relief and my symptoms would disappear.  This did not happen.  I finally went back yesterday and had another x-ray.  My left lung has not fully re-inflated because there is still some fluid in there.  So, we talked about immediate options to remedy this.  We opted for a not-so-immediate option of surgery in about a week and a half where they would do a thoracoscopy (go in with a small camera and see what's going on in there).  Depending on what they find, they would do one of two things - if the fluid shows any signs of cancer, they would drain the fluid and do a pleuradesis which is to put talc between the lung and the chest cavity wall which would act as a glue to adhear the lung to the wall.  This would eventually cause scar tissue to form which would keep fluid from collecting there forever more.  If there is no sign of cancer in the fluid, they will drain the excess and implant a little plastic tube in my side which I can utilize to drain the fluid myself if need be.  Here is the kicker - needless to say, I don't want any more cancer showing up in my body whether it be solid, gas or liquid.  But, if this fluid does test positive for cancer, there go my chances for surgery.  No surgeon would operate as far as I've been told.  The good news is, the preliminary testing they did on that 2 liters of fluid came back negative.  However, I've been told that many times when that happens, it's a false negative. (Killjoys!) We'll just have to keep a positive thought.  Continuing on, I texted Charles with this latest development.  He called me back and suggested I come up to Yale and let he and Dr. Detterbeck do the surgery.  He said that they could do the thoracoscopy as well. If everything looks good, and the fluid still tests negative, they could just open me up right there and take the tumors out.  If not, they can do the pleuradesis and call it good.  One surgery instead of two.

So, we are waiting to hear when Dr. Detterbeck can see me, hopefully sometime next week. Per Charles' advice, we have also put a call into Sloan Kettering in NYC to see if we could get in for a consult there.  I'm in the process of getting copies of reports faxed off to both facilities.  Now it's just a waiting game.  My prayer now is that the fluid that is left in my lung won't increase and make things difficult before I can meet with these good doctors!  I'm still a bit short of breath, but I'm functional.  I'm grateful for that!  I've experienced many of the Lord's tender mercies these last few weeks which have strengthened me, and enabled me to remain positive.  I couldn't ask for more at this point.

A new way to get info out to family and friends!

I thought this would be a good way that Chris could get info out to all our family and friends.  This way, everyone can get it directly from the horse's mouth, and not lost in translation....(which NEVER happens in our family...)  I'm an administrator and so is Chris and Ken.  Everyone is welcome to add their supportive comments, or ask pertinent questions.  If Chris feels like answering them, she will.  I'll never step on her toes and will only post with her permission.  Keep all the prayers coming you can and she'll continue to stomp out this terrible disease with style and grace.  Love you Seester.  You're my bestest friend.

-Barbra