Quote for October

A Prayer for the Ephesians Eph. 3:14-21

For this reason I kneel before the Father, from whom His whole family in heaven derives its name. I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen!

Tuesday, August 31, 2010

Am I Descending Into the Pit?

Caution: This blog contains graphic details about the symptoms of carcinoid cancer. I am going through another crisis, and I need prayers. Not a crisis of faith, but a physical crisis, as my symptoms are increasing and my oncologist isn't catching on that things are noticeably worse.

Greetings from the Southland! I am now officially retired; other teachers are getting up early to go to work, but I don't have to get up early any more!!! I do get up by 8:00 am on most days and go for a walk in the morning.

Today I was having a great morning. It was sunny, but not hot, when I set out to walk a mile at 9:50 am. I headed a block north with the cat in the house sleeping and the dog in the backyard looking for lizards to chase. I would be back in 20 minutes to shower and get ready to leave for the Cancer Center at 11:30. It was a really lovely day.

I was one block from home when I felt like I needed to use the bathroom. A few more seconds and I realized it was a carcinoid problem. (A carcinoid problem is very urgent) Another second and I realized that I needed to turn around NOW. I was sick when I got back to my house, and was afraid to go on and continue my walk. I was ill until 1:00, including a detour off the 91 Freeway to stop at a Carl's Jr restroom.

Carcinoid cancer is characterized by diarrhea. Also, my face flushes pink, and I get surges of heat that spreads over my head and shoulders. As my long-acting Octreotide shot wears off, the symptoms break through.

This month I have been sick with diarrhea twice in public places. (This has never happened before.) The previous time was just 12 days ago when we were moving K into the dorms at college. I dashed into the restroom in Metzger Hall instead of going to the cashier with a check. By the grace of God, I had brought a change of clothes because I thought I would get grubby helping carry boxes into K's room. I called my husband from the restroom, and he brought me the clothes.

For the rest of my life, I will now have to carry a change of clothes with me every time I leave home. I don't feel safe anymore.

I have read accounts of carcinoid patients on Cancer Compass. I have read the letter of a wife asking what more can be done for her husband whose diarrhea now lasts all day and all night. I have seen a photo of a carcinoid patient sitting in his wheelchair unable to hold his head up anymore. Metastatic carcinoid is not curable. No one wants to go through this. It is a descent into the pit, and it looks like my descent is starting now. I have wondered when this day would come for two years.

When I was at the oncologist's office today, he did not want to increase my prescription of Octreotide. He wants to leave it at 30mg a month because that is the amount used in the PROMID study that we are following. He wants me to take Imodium or Lomotil if I just have diarrhea twice a month. He doesn't consider it a very bad problem.

Here is the problem. Lomotil or Imodium is taken after a patient already has a bout of diarrhea. If my diarrhea begins while I am out in public, it is already too late. I need to be protected from public humiliation. I'm not ready to go into that pit yet.

Luckily, my doctor is having me come back in one week. He wants to see how I am doing. If the medications don't work, he will consider increasing in Octreotide to 40mg. I also need to suggest that he measures another cancer marker in my blood. For several months the Chromogranin A in my blood has been going down to extremely low levels. However, for 3 months my symptoms have been increasing. I have information about Lanreotide, another marker we can check.

I need prayers that the oncologist will consider this other blood test. I am also getting concerned that we need an Octreoscan to see if the tumors in my liver can been seen. I keep having increased symptoms, but nothing shows up in scans. I want an Octreoscan, even if that temporarily raises my Chromagranin A levels. I have this fear that I still have the tiny tumors, but they may be increasing in number while staying very small in size. If the tumors were getting bigger, they would show up in an MRI. They don't show up, but I keep getting sicker. Maybe there are dozens of tiny ones.

Please, Father, help this to work out.