Sid Bacon

Cathy and I went to the pain management office yesterday for a consultation. We met with the leading physician and her physician’s assistant. The discussion focused around installing a pump that would be used to deliver medication directly to the spinal cord. One advantage of the pump is that the pain can be controlled with significantly less medication, which in turn means fewer side effects, like nausea and lethargy. The claim is that the installation of the pump is often accompanied by an increase in weight, as appetite can return with a loss of nausea. Cathy and I are still not sure we are ready for the pump, as we hold out hope that pain will be reduced as a result of the chemotherapy.  The decision for now was to increase the dosage of the pain patch (from 200 mcg/h to 300 mcg/h) and see how I do with the pain and side effects. We’ll be watchful over the next few days. This is an aggressive increase, but it is needed in order to determine whether we can even control the pain with patches. If we can, we can reduce the dosage until we find the right dosage for now. If we can’t control the pain, then we have to consider the pump.  The surgery to install the pump is rather straightforward, taking all of about 30 minutes (under general anesthesia).  And if it works for me as it has for others, then it could increase the quality of my life.  We’ll just wait and see.  There are, of course, potential drawbacks to any procedure.  We have a follow-up appointment at their office next Monday, just to see how I am doing.  At that time we may or may not have come to a decision regarding the pump.

Cathy got up before me and went on a run.  The coffee was brewing by the time she returned.  We had a cup of coffee and read some of the paper on the back patio before going on a walk.  It was nice to go on the entire walk with her.  It is my favorite part of the day.

Tomorrow we will be going to Piper for another chemo treatment, platelets willing … it is good to be back receiving treatment.  I feel like we are back to fighting full strength!  That is a good feeling.

As always, thanks for all your support!  We greatly appreciate it.

Dear friends and family, I am so sorry that I have not written to keep you posted.  On Wednesday morning, when we increased the dosage of my pain patch from 200 to 300 mcg/h, I got quite sick and was unable to keep anything down.  I was also pretty over-medicated.  We ultimately dropped back to 250 mcg in the evening. On Thursday, I was still very nauseated … unable to keep down my piece of toast … so we decreased back down to 200 mcg. 

I was still determined to get chemo at Piper Thursday morning, but unfortunately my bilirubin counts were too high.  This suggested a blockage, either of the original stent or of a bile duct.  I was sent to ER at Mayo.  I spent last night here and will spend the night here tonight, as well. Fortunately, my best friend is with me through this all.  It is great to have her here with me, though we don’t get in any walks! We were all set to have a procedure done today to alleviate the blockage, but ultimately the decision was made to not do the procedure.  It seemed very unlikely to be successful, and they didn’t want to do any harm.  Further, my bilirubin counts are dropping, so we are hopeful that the blockage is going to resolve itself. In addition, as it seems likely that the tumor is blocking the bile duct, we need to get back to chemo and shrinking that tumor.  We’ll get it done!

In the meantime, we are going to meet with the palliative care team tomorrow to discuss how better to deal with the pain and nausea.  We’ll get this solved.  We are disappointed that the procedure can’t be done with success, but we trust the decision and know that we are getting excellent care at Mayo and Piper, and that they are working together to do the very best for me.  I couldn’t ask for more.

I am also blessed with your incredible love and support. Thank you!

Have a great weekend.  I’ll write next when I can.

I am still in the hospital, but probably will be going home early this afternoon. It will be great to be home.

The forecast is for highs in the low to mid 80s over the next several days. Perfect for being outside.  I plan to take advantage of this weather and having Dan and Laura around (and having Liz around, too, once she gets here on Friday).  I sure hope I feel well and can fully enjoy their company.

We seem to have the pain under control for now, so that is great.  Also, I do not have any nausea … also great.  The nausea may come back with a vengeance, however, if my bilirubin counts go much higher than they are now. 

The bilirubin counts are higher than normal, and preclude the use of the chemotherapy treatment that was so successful for me in the first place. The counts are high because the tumor is pressing on bile ducts, obstructing the drainage of bile from the liver. Various options to rectify the problem were discussed by GI specialists and oncologist at Mayo, with input from my oncologist at Piper. Ultimately, the decision was made to attack the problem with radiation and yet a different regimen of chemotherapy.  (My understanding of the approach is a little sketchy right now, but should be clearer after I meet with my oncologist on Thursday and the radiologist on Friday.)  The rationale is to shrink the tumor, relieving pressure on the bile ducts, thus allowing flow of bile from the liver.  I don’t know how successful this approach is, in general, but I am optimistic that it will work for me.  We have to get the liver functioning properly.  If we do, and the bilirubin counts drop to the normal range, then I assume that we will go back to the original chemotherapy regimen. 

This has turned into a bigger speed bump than I had hoped, but we’ll fight through it.  That is our only choice. 

As always, thanks for your support.  It is much needed and appreciated.

It was great for Cathy and me to be in our own bed last night, without having a nurse wake us up every 30 minutes to an hour for this test or that.  We were both better rested this morning than in the past several mornings.  We went on a very short walk (Dan, Nash, and I had gone on a short one last night), so I’m slowly building my strength back up to where it was just a few weeks ago.  It won’t take me long.
 

The weather is ideal right now, with highs in the low to mid 80s and lows in the upper 50s to low 60s. It is a great time to be living in the Phoenix area.  I even needed a light jacket on this morning’s walk (I guess you could say I am a bit of a wimp …).
 

Dan brought me home from the hospital yesterday while Cathy went to work (she has a class on Tuesday and Thursday in the late afternoon, and had plenty of meetings and other business to attend to … these things pile up, especially when you graciously and lovingly drop everything to take care of your sick husband).  Dan and I were greeted (as was Cathy a bit later) with a meticulously cleaned house, compliments of our friends Shelley and Larry – what a wonderful gift … such a treat to have the house cleaned after spending the past five days in the hospital.   This is yet another example of the support we have been receiving for so long now.  It is humbling, and reminds us that we need to do more for others.
 

I am feeling pretty well today.  Dan and I are going to go to a movie this afternoon, after we both get some more of our work done.  It should be fun … and certainly very special for me to spend time alone with Dan.  He is quite amazing and just a joy to be with.
 

I am looking forward to meeting with my oncologist tomorrow at 10:00.  We are also meeting with the nutritionist at Piper at 11:30.  On Friday morning, we meet with the radiologist, followed by an appointment with the holistic nurse who teaches yoga.  The last time we met with her, she guided us through poses that really helped relieve my back pain, at least for a while. Although my back pain currently is less than it had been most recently, I expect to get some relief nevertheless.
 

I am fortunate to have so many friends and family pulling for me and helping me keep a positive attitude. We can do this, although it clearly will not be easy.  It will be much easier, however, as a Team, fighting together. Fortunately, I have the best Team around … I am grateful for you and all you do.
 

Thank you!