What a gorgeous day!

Just went out to pick up lunch and it is a beautiful day here in New York City. The temperature must be in the 70s and it's sunny with very little wind. My allergies are driving me nuts and my nose is dripping like a faucet, but on a day like today, I just have to suck it up (and take a Claritin D) and enjoy it. Hope it's still like this when I get home.

The meeting with the dermatologist was strange. First, he had me confused with another patient and kept asking me if I had a hobby, such as pottery, where I used my hands. Despite my negative reply, he asked me several times. (Hint to doctors: It would help if you read the patient's file before you entered the room.) He thought my fingers looked much better, and told me to keep up with the silver nitrate sticks, focusing on the infected skin in particular. I applied one again on Wednesday night and boy, did it burn! I suppose that means it was working. He also prescribed another antibiotic and had it called in to my pharmacy before I saw him. I picked it up and haven't taken it yet. I'm going to give the silver nitrate another week to see if it clears up. I really don't want to keep taking antibiotics.

At my weigh in on Tuesday, I had lost 0.6 kgs (a bit over a pound), so I guess I have to step up the caloric intake. Ed is concerned with the continuing iron infusions and is determined to get me to eat more iron-rich foods. Last night we had burgers and veggies. I don't know how much iron there was in that. Anyway, I did eat lots of protein yesterday, which I have been lacking since most meats taste very dry to me. I forgot to weigh myself this morning, but will do so tomorrow. I meet with the nutritionist again on May 6. I hope to have a better report for her by then.

I have to give a shout-out here to Dan and Kay, who turned me on to Greek-style yogurt, Fage Total (pronounced fa-yeh) and Chobani in particular. I have always hated the taste of yogurt, except when it was mixed into a smoothie, but I love these two. If you haven't tried them yet, I highly recommend them. Fage Total is full-fat yogurt and Chobani comes in fat free and 2% fat. Try them and let me know what you think. Thanks, Dan and Kay!!

Taking Mom out to lunch tomorrow and then I'll probably spend the weekend in the yard (sorry John). I find that yardwork really helps stretch out my lower back, which has been painful since I pulled it in a coughing fit about a month ago. I think many of us here in the Northeast will be in shorts tomorrow and Sunday. Don't forget the sunscreen!

Have a great weekend!

An endless day

Yesterday was pretty much an unmitigated disaster. We arrived at Sloan at 8 for my bloodwork -- no visit with the doctor or nurse scheduled. My blood draw was complete by 8:30, and we settled down on the couch in the lobby expecting our usual two to two and a half hour wait. When nothing was happening by 11:05, I went into the chemo suite to get an update. Imagine my surprise when I was told that the pharmacy had been waiting for the results of my triglycerides and had only just starting mixing the drugs. The receptionist claimed she had told them to put a rush on it, and hopefully it would only be another half hour. A few minutes later, Dr. K's assistant came out to tell us about the hold up and that she and the nurse had been calling to get things moving because the results of that test were not necessary to mix the drugs. A manager came to see me to apologize for the delay and promised to send a patient rep to see me in chemo. At 12:30, I was finally called into chemo. It turns out that the nurse had ordered another iron infusion for me, so that added 15 minutes to the typical three hour infusion. Having arrived at Sloan at 8:00, we finally pulled out of the parking deck to head home at 4:00.

When we arrived home at 5:35, I headed upstairs to hit the sack. When Ed suggested that I at least have a small bowl of cereal before going to bed, I literally sat down on the stairs and sobbed. I had reached the end of my endurance for the day. Once I recovered, I stayed up long enough to eat a yogurt, but I did it in bed in my pjs. Unfortunately, every time I fell asleep I would wake up having to cough. That went on until 9:00. It was not a good day or night. Today I'm exhausted so it will be an early night for me again. On the other hand, when is it not an early night for me??

My cholesterol is down to 213 -- still high but low enough that I'm taking a break from the Zetia. As I have written before, I think it is a contributing factor to my weight loss, so with any luck I'll gain something back while I'm off of it. My triglycerides are very good, so I'm not worried about that. I found out the reason for the iron infusion: my hemoglobin is down to 9.3 (they usually don't let you do chemo if your hemoglobin is below 10). No wonder I've been extra tired, and no wonder I had the meltdown last night. I hope the iron picks me up a bit. I'd love to get back outside to do more weeding this weekend. It's supposed to be lovely.

I have to go see the dermatologist again today as my finger infections have not improved. In fact, I think I'm getting a hangnail on another finger, which will likely result in another infection. His office called in an order for an antibiotic yesterday, which I didn't pick up on the way home. I'm hesitant to take my third drug for this infection (my fifth if you count the two antibiotics I had to take for the vaginal bacterial infection in late February/early March), but I'm not certain that it's going to clear up otherwise. I'll report more tomorrow.

I have chemo again next Tuesday after I see Dr. K. (I have a feeling the pharmacy will be watched like a hawk for a while.) On Thursday, May 6, I have my brain MRI and then I see the radiation oncologist for my six month follow up. Afterward, I see the nutritionist to discuss my progress, if any. Another busy day of seeing doctors. Don't you wish you were me?

It was only 40 degrees when I arrived in the city this morning, but it's supposed to reach 75 by the weekend. I'm supposed to go see Mom on Saturday, although it's going to be the better day of the weekend. I still have a lot of weeding to do, so I'll be out there Sunday if it's not raining -- or maybe between any raindrops. I hope your weather is lovely, too.

Astounding

When I first found out the details of this clinical trial, I was informed that the pharmaceutical companies would pay for the drugs, but I would be responsible for the rest of the treatment costs: doctor visits, blood work, infusion, scans, etc. At that time, I didn't know that my insurance company had signed an agreement with MSKCC to make the hospital in-network, so I thought I would continue to have my scans done in-network at another facility and I would pay whatever balance the insurance company didn't cover. Of course, I was thrilled to find out that MSKCC is in-network now, so I get charged $20 for each visit and nothing for anything else except prescriptions. I even get my scans done at Sloan.

Imagine my shock when I received the detailed bill that Sloan is sending my insurance company. Almost $12,000 for one month of treatments, bloodwork and scans! The insurance company won't actually pay that amount, but still. I don't know how much it would have covered if Sloan was still out of network, but I'm sure I wouldn't have been able to afford to stay in the trial. My portion of the bill came to $60. Can you believe it??? After paying out all that money before July 1 of last year, it really irks me that I had to lay out the balance of all those bills and now that these two companies have a contract, I'm off the hook. Don't get me wrong; I'm thrilled that I don't have to pay out that money, but it's just insanity. Those who don't have the in-network coverage get hit for tens of thousands of dollars, while those that do pay almost nothing. Doesn't seem fair to me.

Have a great weekend!

Stable

I'm a bit busy today with the boss just back from Italy, but I wanted to let you know that my scans showed that my tumors are stable. That means six more weeks in the trial, with scans scheduled sometime after May 25.

Also, I gained about 2 pounds in the past week. We'll see if that holds or improves next Tuesday.

My iron counts were okay so no iron infusion yesterday. Cough continues but the Lyrica seems to be helping. I'm not taking anything else, other than an occasional allergy decongestant. The pollen is REALLY affecting me this season.

They will be checking my cholesterol next week and I'm hoping that if it's good, they will give me a month-long break on the Zetia. I think that is a major cause of my weight loss.

That's all for now. I'll be back soon!

Aaargh! The Pollen!!!!

I rarely suffered from seasonal allergies in the past, but I suppose the mets in my lung have made me more sensitive to the higher pollen counts. I don't know what it's like where you are, but the pollen here is terrible. Everything is coated with green dust, and the tree pollen remains high. The grass pollen is next, with mold coming in at low levels. Today it's raining a bit here, so with any luck, we'll get a bit of a break. My chest could use it, and so could my back.

I'm happy to report that the Lyrica seems to be making a positive difference. Although I'm still coughing quite a bit due to the pollen, I can see a difference in the "non-allergy" cough. I've been on it at a twice a day level for three days now, and I'm quite pleased so far. I tried Claritin D 12 hour to help out with the phlegmy cough, but it doesn't help me much. Will try some Zyrtek D (however it's spelled) today. I just really need something that will allow my lower back to heal. I've been taking ibuprofen every day to get a little relief, because when I cough, especially early in the day before I've stretched out, my back is extremely painful.

Dr. K's nurse sent me to a dermatologist at Sloan on Tuesday after chemo, because they decided they didn't want to give me any more antibiotics for the infection in my ring fingers. The doctor was very personable and used silver nitrate around both fingernails. My understanding (from a Google search) is that the skin that has discolored (it's black, actually) will eventually slough off, leaving healthy skin underneath. I'm to apply the silver nitrate once a week for four weeks, and I have to pick up a prescription today for a corticosteriod that I have to apply to my fingers as well. That's to reduce inflammation. We'll see how it works and how fast. I can say that after almost three days, my fingers are not any less tender nor any less red.

We just learned that our Aussie friends, who we met in 2005 on a Mediterranean cruise, visited in 2006 during the whirlwind Florida tour, and sailed with on Liberty in November 2008, are moving back to Australia. We are so sad to see them go, although I suppose now I'll have to visit Australia! I wish we could get to see them before they leave, but this chemo schedule makes it so difficult to get away. We wish them all the best. We love you guys!

Have a great weekend!

Happy birthday to me...

It was a Keystone Kops kind of day. Woke up at 7:15 and immediately started coughing and wheezing. Realized that going to a garden for the day would be a biiiiig mistake, unless I wanted to cough, blow my nose and hack all day. So, I had breakfast, spent some time with a heating pad on my lower back (which is not getting any better since I can't stop coughing and give it a break), and decided we would rent some vidoes and watch movies all afternoon. Got in the car and headed to the video store, only to find it closed two months ago. I guess it's been a while since we rented a movie! Headed back home, had lunch, opened my cards (thanks everyone!), cried at the one my mom sent, spoke with mom for 45 minutes, then decided it was nap time. Napped for two hours, visited Lydia G. for an hour while Ed picked up dinner, then had an upset stomach and could barely eat. I didn't even have my birthday pound cake! We decided since it turned out to be a not-so-great day, we would make this my birthday week. We're hoping to get at least one really good day out of it. I'm very grateful to have celebrated another birthday, but it could have been a little bit better. We finally had birthday cake yesterday and watched a movie. All in all, not a great weekend, but not too bad.

I started the Lyrica last night, but it's too soon to tell if there will be any benefit. The doctor said it would take a few days, so we'll see what happens. I showed Ed the literature on the neurostimulator and we both agreed that it is not an option that we would like to try. For one, I wouldn't be able to have any MRIs, and there is the possibility of infections, shocks, interference from certain equipment, etc., not to mention the implantation of the device, which is not small, somewhere in my chest. The MRI issue is the most important, as that is how the radiation oncologist tracks my skull and clivus tumors. I'm not giving up that test for The Cough.

Someone on the list I belong to wrote about a doctor out in California that does some very aggressive lung surgery. I may look into that. Supposedly he will review a patient's case without seeing you. If he thinks that surgery is possible, then you make an appointment to see him. That, of course, is still a last resort. I really don't want to give up my right lung, and I have a feeling that would be the only way to remove this tumor in its entirety.

I'm feeling extremely tired the past few days and will be interested to see what my hemoglobin reading is tomorrow. The iron is not helping, so they are going to have to try something else. I'm not scheduled to see anyone tomorrow, but I may have to insist on seeing the nurse. I'm sleeping a lot (see two hour birthday nap above) and that's not a good thing.

Beautiful weather out here, but the tree pollen is at its highest level, with grass and mold not far behind. Ed and I are both suffering from seasonal allergies. I'll be very happy once the bulk of the stuff has bloomed and all the green pollen is gone.

Have a great week!

The Cough

Yesterday afternoon I met with the pain management doctor to discuss options to deal with The Cough (seems appropriate to capitalize it). I spent quite some time first with the resident and then Dr. Gulati, and we came up with a menu of options. The first is to try Lyrica, which is a medication used to treat fibromyalgia, thought to be caused by overactive nerves (I'm sure you've seen the ads). The doctor thinks it may help desensitize the phrenic nerve and thereby reduce The Cough. He wants me to take it for three nights, just in case I have a reaction (confusion being the main one he mentioned), and if I have no problems, I'll take it twice a day. I should know in a few days if it helps.

The second option is numbing the nerve. That would be done by injecting a block into the nerve on the side of my neck. There are actually two nerves he is thinking of blocking, but in his opinion, I will likely only get a few days' relief from this option. If that's true, the only bonus I can see is that we'll know that the phrenic nerve is or isn't the main cough irritant.

The third option is a neurostimulator. This Medtronics device is recommended mainly for people who have chronic leg or arm pain and is implanted under the skin, delivering electrical impluses to nerves in the spine. It works by tricking the brain into feeling a tingling sensation rather than the pain. Dr. Gulati thinks that it may work in my case by disrupting the sensation in the phrenic nerve that tells me to cough. The device can be turned on and off, and it's recharged and controlled using a remote control. The downside is that the device is implanted under the skin (and it's twice the size of my mediport) and in my case, that would probably mean in my chest. A test is done first where temporary leads are implanted and hooked to an external device that I would wear at my waist. If it works to control my cough after a week's trial, the actual device would then be implanted, so it's a temporary way to find out whether or not to go through with it.

He is also thinking of other options, which we can discuss if we exhaust these three. I told him I needed someone who would think outside the box, which I suppose he has to do anyway. He told me that of the four patients he's treated in the past two years with phrenic nerve issues, they all involved hiccups -- no coughing. So I continue to be unique. Yay me.

Tomorrow we were planning to visit Longwood Gardens in Pennsylvania since I didn't want my birthday celebration to hinge on food (usually we go out for a good dinner). However, with all the pollen in the air, my cough is worse than normal and Ed questions the sanity of visiting a garden. I guess I'll have to give that some serious thought this afternoon. Otherwise, I have nothing planned and I won't be having my usual four layer vanilla cake with chocolate icing, since I can't tolerate the taste of chocolate right now. Maybe a vanilla cake with lemon frosting?? Or a pound cake?? Both of those actually sound yummy.

It's been difficult the past few days trying to eat five meals a day. I've tried getting in some extra snacks and I've been also trying to drink fruit juice, but the 260 extra calories from the juice seems to fill me up. Oh well, I'm giving it my best shot. I guess we'll see in a week or so if it's working.

Before I sign off, I want to send a greeting to Lydia A., who shares my birthday if not my age (she's a spring chicken). Happy birthday, my dear friend. I hope you have a fabulous day!

Have a wonderful weekend everyone!

Long 48 hours

Monday evening Ed came into the city and my boss and his wife took us out for a pre-birthday dinner. Told that I was to "pig out" that night, I tried my best but things just didn't taste quite right. Unfortunately, the food was also a bit rich for my stomach, and I ended up with a stomach ache that lasted all night and into Tuesday morning. That celebration didn't go very well, although the company was wonderful and the restaurant was lovely.

Yesterday was chemo day. My iron is still low and my hemoglobin is down to 9.4 (not that anyone informed me of that fact). After my treatment I was given iron by IV again. We'll see how that affects my energy level over the next few days.

At 3:00 we saw the nutritionist and she provided several great ideas. She recommends adding protein powder to smoothies and milkshakes (if I can tolerate them -- smoothies are my drink of choice) as well as using at least 2% milk and yogurt rather than nonfat. She also suggested that I replace half my water intake with fruit juices, which are much higher in calories, and that I try to eat at least five smaller meals a day -- working my way up to six to eight small meals a day. She wants me to avoid being overwhelmed by the "normal" amount of food that I would eat during my three-meals-a-day routine and suggested breaking some of those portions in half. I also need to add bakery goods, like muffins and pound cake, to my list of foods. Since I like carbs with butter, she encouraged me to eat pasta, bread, and potatoes. Since my iron levels are low, she also gave me a list of iron-rich foods and told me I need to eat the non-meat sources with vitamin C-rich foods.

Several foods that I like were on her short list: peanut butter, bananas, eggs, pancakes and waffles, oatmeal, sour cream, smoothies, and bagels. That was good to hear, as I was afraid she was going to have me eating tofu or some other food that doesn't appeal to me. (Apologies to those who like tofu.) I explained to her how difficult it is for someone who has always tried to watch her weight (at least since I turned 30) and counted calories to suddenly find herself looking for high calorie foods. It's a change in mindset that isn't that easy. She explained that I need to add about 250 calories a day to maintain my weight, based on her calculation of my current caloric intake, and add 500 calories a day to add about 1/2 - 1 pound per week. She also wants me to keep a journal for a week of all my food and beverage intake as well as the times I consume them.

I guess I'll be taking a trip to the grocery store this weekend to see what might interest me. If I let Ed go, he'll buy multiples of all kinds of things and then we'll be left with multiples of things I can't/won't eat. I see myself lugging all kinds of stuff into the office, though: jars of peanut butter, sticks of butter, fruit juices, crackers, etc. Thank goodness we don't have bugs!

Tomorrow is my appointment with the pain management doctor to discuss numbing the phrenic nerve. I will report back on his recommendation. I have chemo again next Tuesday and then scans the next day. I will also have an x-ray of my right jaw, as I have been experiencing tenderness there for a few weeks. My infection on both ring fingers has not cleared up, so I am back on an antibiotic today for the next week. Other than that, I feel okay.

Today the temperatures are supposed to reach the mid-80s. It was 85 degrees on our way home yesterday and by the time we reached our driveway at 6:45 p.m., it was 82. If your weather is anything like ours, GET OUT THERE!

Happy April

I know, I'm a few days late! Belated happy Easter greetings to those who celebrate it. The Easter bunny had eggsellent weather for hiding those baskets yesterday. It was sunny and in the 70s here. Thank you, Lydia and Joe, for having us over for dinner. I can't believe I ate so much! Thanks also to Sue for joining me for lunch on Saturday. I had a wonderful time.

This will be a busy week. Tomorrow is not only chemo but we're seeing a nutritionist for a consult at 3 p.m. That will make for a very long day. Thursday is my appointment with the pain management doctor to discuss numbing the phrenic nerve. I don't know if I want to hear the details, but I suppose I must. I'll report back after that meeting.

The weather has certainly improved my mood of late. I've actually been a bit busier, too. I started crocheting a baby blanket for a friend, did some weeding and some baking, decorated Easter eggs, did some cleaning and other mundane household chores, and took a nice walk on Friday afternoon. The weather is supposed to be beautiful and warm for most of this week. Too bad I have to come into the city the entire week. I guess I'll have to make certain I get out at lunch.

Have a great week!