So it's going on six weeks now since I had the surgical biopsy of my eye. By tomorrow, I will have completed my two weeks of the doxycyclene antibiotic treatment. It has been a pretty uneventful week and a half. I'm tolerating the antibiotics fairly well... they just make me a little queasy in the mornings, as I am supposed to take them on an empty stomach. It's hard to tell if they are having any effect on my eyes. I am still seeing swelling in the mornings, especially in my right eyelid, but I don't know if that is still residual from the surgery.
Other than that, physically, I'm feeling great. My eye is pretty much completely healed from the surgery. Though I am "healthy" and capable physically, I decided not to return to work for these past two weeks that I have been taking antibiotics. I thought it would be way to stressful to come back to my classroom and try to pick up the pieces after having been gone for a month, then have a two-week break (our school is on a modified year-round schedule, so the whole school is off from 10/4-10/15) and then start my Rituxan treatment on October 18th and be gone again. It would be way too disruptive for my students as well. Teaching requires so much of me mentally, emotionally, and physically, that I know I wouldn't be able to do my job well right now, and still have the bandwidth to focus on healing. I thought it best to just sort this all out first and then go back to work once I kick these health problems to the curb.
As lovely and relaxing as it has been having this downtime, I am starting to grow a little impatient as I wait. Once I've completed the antibiotics tomorrow, I have to wait TWO MORE WEEKS before we can see if it has had any effect on the tumors. I have an MRI scheduled for October 12, and a follow up with Dr. Vempaty on the 14th. At that point we will determine the next step. If the MRI shows the tumors are unchanged, then we will begin Rituxan on the 18th, as scheduled. If the tumors are visibly smaller, well, then things could get interesting.
I know the chances of that are so slim, but there is a part of me that feels like it COULD happen. Another component that makes it more plausible in my mind, is that about two and a half years ago, I had an unexplained illness for several weeks, where I experienced symptoms (fever, chills, fatigue, cough) that are common to chlamydia psittici (though I have no idea where I would have contracted the infection). Still, the timeline is interesting, in that soon (maybe 6-12 months) after this unexplained illness, I developed the symptoms in my eyes which led to the lymphoma diagnosis. Could that unexplained illness have been chlamydia psittici, and if it was, could it have triggered this lymphoma? Seeing that so many other things about this case are so unusual (my young age, bilateral involvement--meaning both eyes are affected), I just am feeling like I wouldn't be so quick to dismiss that possibility.
Yet, it is one thing if the lymphoma was caused by the infection, but entirely another if the antibiotics prove to be effective treatment. Apparently, this type of treatment has only been successful in very few cases in few parts of the world, mainly in Italy. If the antibiotics work on me, I really don't know what will happen next. I know that my oncologist, Dr. Vempaty, has never treated anyone this way before, and I wonder if she has any idea of the protocol for how to administer this. A good friend of ours who is also a doctor suggested that we ask around and find out who IS the expert on this type of treatment (probably one of these Italian doctors), and encourage Dr. V to get on the phone to Italy. Who knows, hopefully she already has put in her own research. I'm sure she will have many of the same questions as I have: What will happen next? Will I have to repeat the antibiotics? In how long? How often? Will this put my cancer in complete remission? How often will we need to scan? What are the chances for a relapse? Our doctor friend also told me that if it does work, I should prepare myself, as there will probably be a lot of medical interest in me.
Alas, here I go, furiously spinning my wheels into deep hypothetical mud. This is one of the problems of having too much time to sit and think. It's just so frustrating to not know what the next step is, and having to just WAIT. I want to know what my course of treatment will be. I want to know when I will return to work. I want to know how this will all affect the other, parallel medical issue of my impending surgery to remove my ovarian cysts. I am very much an organizer and a planner, therefore, I find this lack of control both frightening and unnerving. Yet I know I need to let it go. A dear friend recently sent me a little laminated sign that reads, "We make plans, God laughs." I have it hanging right next to my computer as a gentle and comforting reminder that I am indeed not in control, and I need to trust in my faith, and know that I will be taken care of.
We had a lovely, though brief, getaway to Monterey this past weekend. We got a bit of a late start on Saturday, as we had a morning commitment and couldn't leave until after lunch. Ewan "napped" in the car. Gavin and I initially planned to head to the beach that afternoon, and save the aquarium for Sunday when we would have more time, but Ewan would hear nothing of it and insisted we go THAT afternoon. We checked into our hotel to drop our stuff off, then headed to the aquarium and spent the next two hours ooohing and aaaahhing and the sharks, fish, otters, crabs, sea cucumbers and other delightful creatures. The next day we went to one of our favorite places on Earth: Point Lobos natural reserve, where we scrambled around the rocks exploring the tide pools, where we found dozens of little crabs hiding in the crevices of the rocks.
Driving home, I received a phone call from someone who was a cancer survivor. She had received my name through a Leukemia Lymphoma Society program called First Connections, where they try to match up people who have been newly diagnosed with another survivor who has had a similar diagnosis or experience. This gal is my age, and was diagnosed with Lymphoma when she was 31 and had a one-year-old daughter. She had a much more aggressive disease than I have, and therefore underwent more strenuous chemo treatment, but she has been in remission for 5 or 6 years now. It was so great to be able to talk and share stories with someone in a similar situation, and to be inspired by her story of survival.
I have to say, I am so impressed with the Leukemia Lymphoma Society (LLS), and with all of the resources they provide. Some of you may remember that five years ago, I participated in a Team in Training Event, and raised money to support the LLS as I trained (and later completed) the San Francisco Kaiser Permanente Half-Marathon. Many of you reading this probably even donated money to support me. Completing that half-marathon was by far one of the top accomplishments of my entire life. I find it so ironic (or is it more like serendipitous foresight?) that the organization that I raised nearly $5000 for is the one that supports the cancer that I am diagnosed with 5 years later. In any case, I hope to become more involved with LLS in the coming weeks, and possibly even participate as a Team in Training "Honoree," and work with the run team that is training for the winter events by helping inspire and encourage them. It will feel so good to be able to give back to this wonderful organization that has given me so much.
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.
I realize the last post was a bit of a downer, as I wrote it on one of only two bad days that I have had so far throughout this whole crazy experience. I know it's natural to have ups and downs, but I want to reassure you, my dear friends and family, that I have really been mostly up, and remain up--and I ask you to remain up with me. I am feeling very encouraged and optimistic, despite a few small setbacks. There have been a few frustrations this week, trying to get all of my medical records in a timely manner from the Black Hole that is Kaiser Member Services, but as of yesterday we finally obtained what we needed (thanks to my wonderful and tenacious husband who would not take no for an answer), and delivered them to Dr. Levy at Stanford who will be offering his 2nd opinion. After speaking to Dr. Levy on the phone last week, he seemed to agree with the treatment plan that my Kaiser docs are proposing, but he wants to make sure that he agree with their diagnosis, and therefore needs to see my pathology slides, CT scans and MRI images. Hopefully we will hear from him very soon.
I met with my Kaiser oncologist, Dr. Vempaty, again today to ask several more questions. We decided to go ahead and schedule treatment to begin on Monday, September 20. I will go in for my first of 4 weekly infusions of the Rituxan drug (this is the non-chemo drug that only attacks the cancer cells and not the healthy cells, therefore causing fewer side effects than chemo). That will give a week for Dr. Levy (the Stanford doc) to look over my records and hopefully concur with my current diagnosis. If he disagrees-- well, then we will cross that bridge at that time. This coming week I will attend an orientation for the infusion clinic at Kaiser, and continue resting, reading up and preparing for treatment. (I have been on medical leave for these past three weeks since my surgery, deciding that it was best for me to focus on figuring out my treatment options and not have to worry about the stress of work right now).
BEST case scenario, I will have my first infusion on the 20th, take off Tuesday the 21st to recover, and return to work on Wednesday the 22nd and work the rest of that week. The following week I would follow the same pattern: infusion on Monday, rest on Tuesday, work Wednesday through Friday. That will take me up to my school's two-week October break which begins on the 4th, and I will finish the other two infusion treatments over the break and return to work full time after the break on the 18th. Of course, this is all depending on how I feel and how well I react to the treatments... I have no idea how fatigued I will be, but this is what I am hoping for. I miss school terribly--my friends, colleagues and students-- and I am anxious to get back to my normal life again! I really like the idea of coming back part time for the two weeks before break so that I can ease back in--I'm sure it will be an adjustment after being gone for so long. After I receive the four weeks of treatment, we will wait six weeks and then do another MRI to see how the cancer responded to the drugs, and see if I need additional treatments (fingers crossed that it will work!)
So that is the latest update. I have been so grateful to everyone for all the well-wishes, positive vibes and prayers that have continued to come my way -- not to mention all of the delicious meals that have been provided by my fabulous colleagues!! We are so incredibly appreciative of all of the support we have received... it truly means so much to us. I am REALLY looking forward to jumping over this health hurdle and returning to life as it was before!
Thanks once again for the continued thoughts and prayers. Here is the latest update. Yesterday (Thursday) we went to see Dr. Sudesh, my ophthalmologist. He removed the stitches in my eye, which luckily was a painless process, and answered as many of our questions as he could, but really most of our questions needed to be directed to oncology. He was pleased with the healing progress, as my eye is SO much better than a week ago. The swelling has gone WAY down, and it feels way less irritated now. We booked a follow up appointment about 6 weeks out, so that he can check on me after I have received treatment for the lymphoma.
This morning we went to meet with a second oncologist at Kaiser, Dr. Vempaty. I liked her much more than the first oncologist we saw, as she seemed much more experienced and knowledgeable, and just easier to communicate with. We should be able to see her from now on. We met with her for close to 45 minutes and learned some new information. My full pathology reports are now in, and my diagnosis is Low Grade B Cell Lymphoma, stage 4A. Earlier in the week the first oncologist, Dr. Zhu, had called me to tell me that the results of my bone marrow biopsy were back and that it was clear, however, this morning Dr. Vempaty told me that the results from another test came in and as it turns out, they did discover a small percentage of lymphoma cells in my bone marrow. This was very disappointing to hear, however, it sounds like it really doesn't make a difference in regards to treatment. Dr. Vempaty told us that she, too, recommended treatment with Rituxan alone, with the goal being that we want to balance attacking the lymphoma with my quality of life, meaning sparing me the harsh side effects of chemotherapy. She said that we cannot "cure" this type of lymphoma, but we can lessen its impact. She told us, the chance of shrinking the tumor with Rituxan alone is 60%, with a 25% chance complete remission. If I do not respond to the Rituxan, then we can escalate the treatment to a combination of Rituxan and chemo (R-CVP which is less aggressive, or R-CHOP, which is more aggressive). I asked her if we went for the chemo right away if the chances of affecting the tumor would be higher, and she said yes, it would, but it didn't really matter because the goal was not necessarily to completely eradicate it, but to control it so that it is not impacting me. She also said that this isn't like some cancers where you need to hit them as aggressively as possible the first time around. She said that we can start with the least invasive treatment to see how the cancer reacts, and progress to more aggressive treatments if the initial ones are not effective. The idea being, to prevent putting me through chemo if it wasn't absolutely necessary.
After leaving our appointment, we went downstairs to request all of my records to take with us for obtaining a second opinion outside of Kaiser. I was able to obtain a contact through a good friend of my dad's to Dr. Ronald Levy, who is head of the oncology department at Stanford. I spoke with him on the phone, and he said that, assuming my diagnosis was correct, he agreed with the course of treatment the Kaiser doctors were proposing for me. As soon as I obtain my records, I will get them to him so he can review them and let me know if he agrees with their diagnosis. Once I hear back from him, and assuming he agrees, I will schedule my first treatment at Kaiser, so hopefully that will be the week after next.
I am still feeling like my prognosis is good, and that I have many options for my course of treatment, though I must admit, today was harder for me for some reason. My emotions are like a roller coaster. I've been on such a high from all of the love and encouragement I've been receiving from all of you, but today I had a bit of a downturn. It's just really sinking in now what all of this entails, and it's hitting me how scary and serious this is, and how I really can't believe that this is happening to me, and how I really, really wish I wasn't going through all of this. I think about before all this came about, how great things were going in my life with everything: my family, my job, my friends, my travel etc. All of a sudden, the rug has been yanked out from under me and i just feel like I am spinning in space. Still, deep in my heart I know that I am strong. I will pull through this. I believe so truly that God has a plan for me (that includes me sticking around here on earth for a long time to come), and I have faith that everything will be alright in the end, and I will be all the stronger for it. It just isn't easy.
I know I probably sound like a broken record here, so forgive me if I keep repeating myself, but I again want to thank you for your continued support, through your prayers, in your messages to me, your positive thoughts and vibes, and your love. I am so blessed, and SO grateful. Truly, truly grateful and indebted to you. I can't imagine walking this walk alone. I am a very lucky girl.
