Good news and bad news

The good news is the skull, clivus and left ilium mets are stable. Dr. Yamada explained that it's not possible to see shrinkage or necrosis of the tumors on the scans, so what he looks for is either (a) no change in the size of the tumor or (b) no enhancement where the tumor was. In (b), that would mean that the tumor is no longer "lighting up" on the scans, which means it's gone. Unfortunately, he did not look at any of the other skull mets that he did not treat for changes, but promised he would do so and then have his nurse get back to me. So good news: stability at the least and follow up scans in four months.

The bad news is that most of my lung mets have increased in size, ranging from 20% growth (in the largest) to 50% growth (in the smallest). Ed believes that we haven't given Doxil enough of a chance, especially since I missed seven weeks between my October and December treatments due to the radiation. At this point, I preferred the stability of Gemcitabine to growth under Doxil. I understand that Dr. K thought Gemcitabine was a failure because of what she considered progression of my disease (the discovery of the bone mets), but I think they had been there even before I started treatment. Ed and I will discuss this more prior to my appointment with Dr. K next Tuesday, but I really don't want to step up to the next treatment cocktail (AIM). That would signal an end to my hair and perhaps my regular life: work, travel, etc. I'm not ready for that. She had mentioned a clinical trial as a possible next step if Doxil didn't work, but if it's the one other LMSers have tried, it's not going well for most of them.

I will update you after we see her next week.

On a brighter note, Lydia G's son is getting married on Saturday. We wish Jon and Kristen a long, happy, healthy, prosperous and loving life together. We are looking forward to the wedding and seeing several followers of this blog in two days!

The fun never ends

Last Friday I felt the best I had felt in weeks. To celebrate that and the fact that it's been 12 years since I quit smoking, Ed and I went out to dinner and I enjoyed my first glass of wine in 2009. I was apprehensive about eating my pasta, but I did okay and even ate part of Ed's ice cream tartufo.

I revisited the gynecologist on Friday because things didn't seem quite cleared up and sure enough, the infection persists. Because I couldn't take an oral antibiotic if I was drinking alcohol, I decided to start the medication on Saturday morning. I don't know if I still had wine in my system or whether it was something else, but I was very ill starting just before lunch on Saturday. The feeling persisted through the weekend, although it was mildly better on Sunday. No vomiting, but I was nauseated and had an upset stomach the entire time. Spent most of my time watching television or laying in bed.

Monday morning I had to be at the imaging facility at 9:00 for my brain MRI, which went fine. I also had x-rays taken of my ankle in preparation for my (long overdue) follow-up with Dr. Healey. I finally got to see him almost two hours after my appointment time, and he continues to be pleased with the stability of my new joint. I presented him with an early third anniversary present: photos of me on the Flowrider and the rock climbing wall on Liberty of the Seas. He was pleased to see that I am not letting my surgery hold me back. I doubt I would have thought of trying those activities three years ago, but you only live once, right?!

Today I had my chest/abodmen/pelvis CT scans. The nurse found a vein without a hitch (probably because I cheated and drank a bottle of water on the bus), but the iodine solution I had to drink caused me abdomenal issues, which I haven't experienced in a while. At least I can say that I am no longer constipated, which I always am after chemo treatment.

Thursday I see the radiation oncologist for my follow up and will get the results of my MRI and CT scans. On Feb. 3 I see Dr. K for my follow up. Let's keep our fingers crossed that the bone mets are necrotic, the lung mets are stable, and there is nothing else to see.

Happy birthday to Ian! We hope you have a wonderful day and a fabulous year.

Early bon voyage to Kate and Steve, who are off to the Caribbean on another cruise later this week. I wish we were joining you and hope you enjoy the Journey as much as you do the Quest.

I will be back with an update after my appointment with Dr. Yamada.

Pre-weekend update

Yesterday's Doxil treatment went fine. My bloodcounts were good and I spoke with the doctor before having treatment. We reviewed all my recent health issues and he agreed that the post-nasal drip could definitely be causing my upset stomach. To that end, he gave me a prescription for Flonase, which I'm supposed to use for three days in a row. It seems to be helping already today. I don't know how long I'm supposed to wait between uses, but in the interim, he suggested saline spray. When I get to the end of the bottle (about 30 days worth), I'll schedule a follow up with my primary care physician (Dr. Gout) to either continue with the Flonase or try something my friend Kate uses and suggested. Thanks for the hint, Kate!

I was so sleepy after all the medications they gave me yesterday that I came home and slept for two and a half hours. Me, the woman who doesn't nap! Today I went back to the gynecologist because I was still experiencing some issues and discovered my bacterial infection is not quite gone. She gave me a prescription for an oral antibiotic, which I cleared with the oncologist's office before starting it. I wonder if the pharmacy gives out prizes for the person with the most unique prescriptions filled in one month?? Hopefully this will take care of it, the Flonase will work like a charm to rid me of the post-nasal drip, and I can return to feeling normal. That would be a pleasant change. I am starting to feel better, and my friend and neighbor Lydia informs me that I look much better, although thin.

I am finally getting around to printing the photos from our last cruise, believe it or not. I apologize publicly to Chris and Ian for not getting any photos to them on DVD yet, but my new burner is still out of stock and I'm getting frustrated with buy.com. One of these days I'd like to complete my DVD from our European vacation, but without a burner, I can't go much further with that project. I can't believe how much I've let slide since we came back from vacation, but I started feeling poorly during radiation, which started that next week, and I'm just now starting to feel like getting things done. We'll see how long this burst of energy lasts.

Hope you all have a good weekend!

Drip, drip, drip

I need to call the doctor today to schedule an appointment as I have figured out that the drip is the problem. I don't know why I have it or why it's causing so many stomach issues, but if I take the right medication, the drip stops and the upset stomach disappears. Weird, huh? Unfortunately, the medicine that stops the drip makes me feel light-headed and woozy, and taking half a dose doesn't stop the drip so I'm trading one issue for another. I guess as long as I can eat and keep food down, that's the most important part. I am happy to report that after losing seven pounds during this ordeal, I actually gained one pound back yesterday. Must have been all the bread I ate!

Doxil is tomorrow at noon. I'm not looking forward to it, especially since the radiation dermititis on my lower back is healing quite nicely, and I think the Doxil will cause it to flare up again. It was very raw and sore for about 10 days, but the medication the nurse gave me last week has made a marked improvement. I'll have to ask for another free sample tomorrow.

I still get tired very easily, so I'll sign off for now. Hope you are staying warm wherever you are!

Making some improvement

I'm happy to report that the vomiting has ceased and I'm usually not nauseated, but I still have an upset stomach and I'm still not eating enough. I think, strangely, that the post-nasal drip that I've been suffering with has really been upsetting my stomach, so this week I plan to see my primary physician and either get something to stop the drip or get a referral to an ear, nose and throat specialist. Claritan didn't help, antihistamines don't help for long, and I'm tired of feeling sick. Wish me luck.

I've been resting and relaxing for the past three days, so that's why no one has heard from me. Today I needed to pay some bills, hence my reappearance. Now it's time for some lunch, so I'll sign off for now. Thanks for checking on me!

Update

The nurse from the oncology facility called to tell me the doctor does not want me to have Doxil until the infection is cleared up. So tomorrow I will have the Zometa and have the Doxil on the 22nd. I was hoping for 10 days between treatment and my scans (especially if I'm having stomach issues again and I have to drink the iodine and suffer the stress of the IV contrast needles), but it looks like that window has been closed. Guess I'll have to buck up, but I'm getting used to that.

My stomach is upset today but now I'm not sure if it's from the antibiotic or is the same old problem. I tried to avoid taking the Ativan, but finally gave in. Don't want to be vomiting at the office. It's bad enough doing it at home.

I'll report back in a few days.

If it's not one thing...

Yesterday I saw my gynocologist, who diagnosed a vaginal bacterial infection. According to her, stress, among other factors, can change the pH balance of the existing bacteria and cause an infection. I have five nightly treatments of an antibiotic to use, and she was somewhat chagrined to inform me that the medication may cause nausea and stomach cramps. Yay.

I spoke with the nurse at the NJ oncology facility and she told me the doctor is recommending an upper GI series next week if I suffer from the same problems following my Doxil treatment tomorrow. In the meantime, we will see if this infection may have been affecting my health and if my stomach issues improve as the infection clears. Let's hope so.

I'm still taking the Ativan twice a day, although now .5 mg per dose rather than 1 mg to alleviate the dizziness. My weight stabilized for the first time yesterday, and I actually had lunch out with Ed for a change. Maybe that half of a ham and swiss cheese sandwich helped.

Thanks again to all of you who have been sending me e-mails of encouragement and concern. They mean so much to me. I would call you all if I had the energy to chat, but I feel so worn down from the nausea, vomiting, dizziness and just general feeling of yuck. The good news is that I will be home for the next five days. Doxil is tomorrow morning, Zometa on Friday and Monday is a holiday. I plan to get lots of rest and continue to eat what I can when I can. Since I recently rediscovered saltines and fruit cocktail, I'm thinking of revisiting chocolate pudding. :)

Not making much progress

I have calls in to various doctors today and I'm trying to get things in order here at the office so that I can make any appointments I manage to get scheduled. Right now, we are considering an upper GI series to check for any blockages in my digestive system and I also seem to have acquired some type of vaginal infection.

I apologize to everyone who has written and called over the past week. I have been so miserable and tired that I've been sleeping and watching television rather than keeping in touch. I just don't feel like I have the energy to chat or write, and I'm sorry. You are all so kind to take the time to keep up with me and I'm being selfish in not responding. Please be patient with me and I promise to be in touch individually in the near future.

Love to you all.

I'm still struggling

I started the medication (Reglan) that the doctor prescribed, but it isn't making any improvement. I spoke to the office today to try to get an appointment with him this week, but he has no slot available. I spoke with the nurse, who is going to speak with him this afternoon about my problems. In the meantime, apparently I can take Ativan, which has worked for me in the past. No one told me I could take it or I would have prior to this. I'll try that tonight and tomorrow and see what happens. Keep your fingers crossed.

During this period of stomach aches and nausea, I've lost about three pounds. Nothing to worry about yet, but Ed is getting more concerned because I'm having such a difficult time getting things down. We're back to bland foods again, but even most of those don't have much appeal. I have enjoyed my reintroduction to saltine crackers, though. Despite having shrunk in size by at least one-third, they are delicious. I can't believe I've gone years without eating them. We're now eating plain pasta, grilled cheese sandwiches (okay, not exactly on the bland list but still good), applesauce, toast, the aforementioned saltines, graham crackers, chicken, turkey, pancakes, and tea. Still no wine and even if I could enjoy it, both Reglan and Ativan cannot be mixed with alcohol. Someone tell me why I bought so much wine in December if I can't enjoy it???

On a more positive note, all my scans scheduled for later this month have been approved by the insurance company. I'm currently scheduled to have an x-ray of my ankle and an MRI of my brain performed on the 26th, followed by my appointment with Dr. Healey (which has been rescheduled twice). On the 27th, I have my CT scans of the chest, abdomen and pelvis, and on the 28th I see Dr. Yamada to discuss the results of the radiation. On February 3, I see Dr. K. to discuss the results of my CT scans. This is all preceeded by my Doxil treatment on the 15th and Zometa infusion on the 16th. It's a busy month!

Not such a happy start

It's officially 2009 and so far it hasn't been a great beginning for me. I started off the first two days with a stomach that felt a little better, but I've been very uncomfortable since Saturday. It seems as if no matter what I eat, my stomach bothers me. The acid reflux portion is gone (no feeling like I have a ball in my stomach and a knot in my esophagus), but I'm so nauseated. Ed is starting to get worried because I eat a little bit of food and then can't eat any more. Last night I had a biscuit and an ounce of pasta before I gave up, and, for the second time when this has happened, woke up practically faint because I was so empty. We're trying bland foods again and I'm attempting to snack throughout the day, but even graham crackers are proving difficult to swallow. I'm about at my wit's end. Ten days to go before my next chemo and I can't seem to recover from the December 18 treatment.

Before I sign off, I wanted to congratulate Debbie belatedly on the birth of her fourth grandchild and first grandson. I understand mom and baby are doing well. What a lovely way to end 2008!

I hope this finds everyone enjoying a better start than me. :)