If there is one thing for certain, God is keeping my life interesting. This has been a weird week to say the least, with some big ups and downs. This feels just one big roller coaster ride, and the course seems to keep changing as it goes along.
So where did we leave off? Oh yes. Waiting most of the week for Dr. Levy's 2nd opinion to come through after I delivered my records to him last Friday. I'll get to that. In the meantime I've had a separate medical issue that I've been following up. Back in March, we discovered an ovarian cyst that was causing me some discomfort. I had an ultrasound and it appeared normal and benign and no big deal. My OB/Gyn recommended we follow up in three months in June, which we did, and once again she said it appeared normal and benign, but again she recommended following up in three months which brings us to September, for those of you not keeping count. So I went in last week and was expecting to receive another email telling me everything was A-OK. Unfortunately, that wasn't the case. On Tuesday as I was driving home from my chemotherapy orientation class and pulling into the Safeway parking lot, my phone rang and I immediately recognized the Kaiser phone number that I have become oh-so-familiar with. I was surprised to hear the voice of my OB/Gyn. "My, a LOT has happened since we last spoke," she told me. "Ummm, yea... Big time," I agreed. She proceeded to tell me that the simple cyst that we have been monitoring has now grown larger and more complex, and there were two additional cysts that have appeared as well. She told me that she believes them to be benign, but given my recent medical developments she felt it important to remove them. She told me that my lymphoma treatment obviously trumps this in importance, but after I'm through with the Rituxan, she wants me to have another ultrasound in November, and if things look the same (or worse) she wants to schedule surgery for the end of November or early December. If surgery can be done laparoscopically, my recovery time will be 1-2 weeks. If they need to do open surgery, recovery is 4-6 weeks. They won't know until they actually get in there which type of surgery it will need to be, and they will possibly need to remove the whole ovary, depending on what they find. Of course she said it is possible the cyst(s) could go away between now and then, but it probably isn't likely. Definitely NOT news I wanted to hear on top of everything else going on right now, but I'm trying to take it in stride and compartmentalize my feelings about it. I'm putting it on the back burner so I can focus on my lymphoma treatment which I need to put as my first priority.
The next day (Wednesday) I finally heard back from Dr. Levy. He agreed with my diagnosis, though he didn't believe there was sufficient evidence to show that I have lymphoma in my bone marrow and abdomen (good news!) He did offer up another very remote possibility... apparently there is a very rare infection called chlamydia psittici. It can be transmitted from birds (usually pet birds, parakeets, parrots, etc.) to humans, and in a few cases has triggered this type of ocular lymphoma that I have. In rare cases where this has happened, the lymphoma has been successfully treated by antibiotics. He recommended trying a round of antibiotics for two weeks before attempting Rituxan, though he said that it is a long shot and most likely it will not work, and I will probably still need to do Rituxan. He said he was willing to talk to Dr. Vempaty, my Kaiser oncologist, about it, so I put them in touch. We met with Dr. Vempaty this morning, and she agreed that though this is a long shot, there is no harm in giving the antibiotics a try. She didn't feel that I would be endangering myself in any way by waiting a few more weeks to start RItuxan. Part of me was frustrated by this suggestion, as I had been all geared up to start my infusions on Monday and move on with my life--that last thing I wanted was yet another delay. On the other hand, if I forced myself to take a step back to look at the big picture, I realized that this slow-growing cancer has likely been in my head for two years. What is a few more weeks in the big scheme of things? I had to agree with these doctors: Not much. There isn't really that much to lose, and potentially, unlikely as this scenario may be, there could be a great deal to gain. The remote possibility of treating lymphoma with antibiotics seems quite intriguing and exciting!
I'm not getting my hopes up though. Most likely I will start Rituxan in four weeks' time, and I will mentally prepare myself for it. I started the antibiotics (doxycylene) today and I will take them twice a day for two weeks. We will wait two more weeks and then do an MRI to see if they have had any effect. If they work, Dr. Vempaty told me that she thinks it would be pretty miraculous and she would write a case study on me (not exactly the 15 minutes of fame I would have hoped for, but hey, I would take it.) Still, to keep the ball rolling, we have scheduled Rituxan to start on Monday, October 18, assuming I will have to. I am feeling good about the decision to try the antibiotics though. Who am I to question a brilliant, renowned, Stanford oncologist with countless amounts of knowledge and experience? I also figure, if I don't give it a try, I will probably look back and think, "Oh I shoulda, coulda, woulda,..."
To say the least, it has been an emotionally and mentally exhausting week. In light of all of this week's developments, we decided to scrap all of our plans this weekend (thanks to friends and family that we are flaking on for understanding!) and get out of town. The three of us are leaving for Monterey tomorrow to spend some time at the beach, go hiking, and take our little dude to delight in all of the marvelous sea creatures at the aquarium. I feel like the ocean air will do us a world of good, and I am really looking forward to getting away and restoring my spirit by breathing in that fresh ocean air. I can't wait!
Well this has turned into quite a novel now. I've never been very good at brevity. Thanks for trudging through it all with me, and for continuing to stand by my side through this all. I really, really do appreciate the continued prayers and positive vibes, and ask that you please keep them coming with increased fervor. Miracles are indeed possible, especially through the power of prayer from this amazing network: you, my beloved family and friends. I love you, and wish you a fabulous weekend.
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