I have hats!

Target turned out to be the place to hat shop. Who knew?? They had a decent selection of hats in different shapes and colors, and I ended up with three hats at $12.99 each. Much better than the $170 hat I saw at Nordstrom's -- in fact, even better than the $48 one I saw there. So now I have a selection of hats to bring on our cruise. Now all I need to know is whether I have to take it off to go through airport and ship security. I guess it doesn't really matter, since most people who see the peach fuzz spot will likely never see me again. :)

I'm really hoping to pass my white cell count on Friday, but I think it's going to be very close. My count was 2.3 for the regular white cells and 1.4 for the baby white cells, and that's close to what they usually are after treatment. If I can't have treatment this Friday, it's going to totally screw up my schedule, especially since we'll be away for a week next month. Maybe the shorter infusion time will work like a charm and I'll pass. Keep your fingers crossed.

I will finally see the ENT on Friday morning. Yesterday I was coughing like crazy, so I hope he can figure out what to prescribe to stop the drip. At least the cough isn't leading to vomiting as it did in the past.

I'll check in this weekend.

Treatment went well

Before I begin, I'd like to send out a belated happy birthday wish to Chris. We were thinking of you yesterday and remembering all the fun we had on Liberty. Hope you had a wonderful day!

Thursday's Gemzar treatment went fine. Surprisingly, since it's been four weeks since my last treatment, my white cell count was pretty low although high enough to have the chemo. The doctor and I worked out a schedule for this round. I have my second treatment of this cycle next Friday. As long as my white cell counts are good the week before our cruise, I'll have the treatment. If they are low, we'll skip it rather than take a chance -- sending me off onto a plane and then a boatload of people carrying germs! I'll have had the week prior off, so I'm sure it will be fine.

I experienced some nausea yesterday despite all the drugs they gave me prior to the infusion, so while I was in for my Zometa infusion they gave me some Zofran. It cleared up the nausea in about an hour, and I need to pick up my prescription of it from the pharmacy today. I usually don't experience nausea following Gemzar since we worked out the antiemetic drugs, but maybe because this is the same amount of chemo but given over a much shorter time, my body reacted differently. We'll see what happens next week.

I got my first haircut since prior to radiation and despite seeing lots of grey now, I'm quite happy with it. My bald patch is filling in with peach fuzz with the exception of a few quarter-sized spots that are refusing to participate at the moment. Ed measured my fuzzy area the other day and it's about 6-1/2" x 4-1/2" -- much larger than I realized. It's going to take about six months for the fuzz to become manageable hair, I think, so I'll keep my hair cut low to help even it out (that's wishful thinking at the moment). I'm really getting tired of my wig, and as the weather warms up I'm not going to want to wear it at all. I'm currently on a search for hats (other than my baseball caps) that I can wear until things even out. No luck so far.

I'm feeling much better today and plan to run some errands after lunch. I hope everyone is enjoying their weekend. Only four more weeks until Spring arrives!!

A midweek update

Tomorrow I start my Gemcitabine treatments again. This time the infusion will be done over 30 minutes (vs. 75) to cut down on the toxicity and its effect on my white cell counts. As you may recall, my white cells rarely recovered in the seven days between treatments and I often had to put off treatment for an extra week. Dr. K is trying this new infusion rate to see if I can better tolerate it. I will receive Zometa on Friday (that's still once a month). Then I will have Gemcitabine again on the 27th and then I'm off for a week (that's the completion of one cycle). Still haven't figured out how to handle the inconvenient timing of our cruise, but I'll discuss that with the oncologist tomorrow. I'll do three cycles or so before my next scans and appointments.

On the 27th, I have my appointment with the ear, nose and throat specialist. While I was congested the coughing and dripping wasn't too bad, but as the congestion has eased, the coughing has returned. I hope that he is able to prescribe something that will actually work.

We have decided that our big vacation this year will be a one week return to Paris. We bandied about a 10-night vacation in Hawaii, but even with the specials hotels and airlines are offering, it was too rich for our budget. A trip to Paris in early May will cost us less than half that of a trip to Hawaii. (Maybe we'll get back to Hawaii when bonuses return and/or my medical costs ease a bit.) We'll be staying in the same hotel as last year, and this time we hope to see several sights we missed last time due to time constraints: the Rodin Museum, Notre Dame (we saw a bit but there was a service going on that day and I forgot to walk around back), the palace and gardens at Versailles, the many neighborhoods and gardens we missed, and hopefully a day trip to Chartres so we can visit the cathedral and labrynith that our friend Melinda has told me about and visited several times. It should be fun!

Before I sign off, I want to wish a very happy 60th wedding anniversary to our friends John and Joann. They will be celebrating this aupicious occasion tomorrow, and they are to be congratulated as well as admired. They are a kind, thoughtful and loving couple who continue to enjoy each other's company. I believe there is a lot to be learned from these two. Enjoy your day!

A quick update

Two posts in one day!!

Just wanted to let you know that Dr. Yamada called me back apologizing profusely for his poor communication skills. My other skull mets are stable, and everything "looks fine." Ambiguous, but at least he read the scans and called. He also informed me that it is his job to watch all the mets and he will do so in the future. He also claims I'll be treated royally on my next follow up. I don't want royal treatment, just concerned, professional treatment. Is that too much to ask? We shall see.

Why can't doctors do their jobs?

We can now add Dr. Yamada to the disappointing doctors list. (Dr. K has begun to redeem herself and I believe she may be removed from the DD list soon. Dr. Gout remains a permanent fixture of the DD list, as does Dr. Ass*, my first orthopaedic oncologist.) I have now been waiting 16 days for Dr. Yamada to either review my scans and/or let me know about the skull mets he didn't treat. As you may recall, on the day of my follow-up visit I asked him about the status of the other skull mets and he said he didn't look at them. I asked him to do so and get back to me by the end of the week. That would have been January 30. Today is February 12, and despite two conversations with his nurse, no reply. Today I left a very terse and unfriendly voicemail and said I expect to hear back something by the end of the day.

Do these doctors not understand what patients go through? Do they not GET IT???? How long should a patient have to wait to find out if there is growth, stability or shrinkage in a tumor or tumors? Does it occur to them that this waiting may produce some anxiety? I get the "oh, he's been very busy," but does that mean my time is worthless? That my interest in knowing what's going on in my body is of less importance than his work? I guess paying tens of thousands of dollars to a doctor for his treatment doesn't mean you deserve responsiveness. It's so frustrating.

Ed says I'm too nice and too friendly, and I suppose when it comes to doctors, he's probably right. I want them to like me because I think they will treat me better. I guess this disproves that theory. In the future, it's a business transaction: I pay you, you treat me professionally, efficiently, and thoroughly. Otherwise, all bets are off.

Sorry for the rant but I'm really annoyed at the moment. Think I'll take a few minutes to breathe deeply.

We're back in the saddle again

After last week's fiasco, this is turning out to be a better week. Ed started to feel bad Monday night and sounded a little congested Tuesday while we were together for our MSKCC appointment. By the time I got home Tuesday night, I was feeling poorly. When I went to bed, I had one of my famous coughing fits ending in vomiting, which didn't get the night off to a good start. Then I woke up Wednesday morning when the alarm went off, heard Ed go into the upstairs bathroom, then listened to him go down the stairs, and eventually heard him vomiting in the downstairs bathroom. By the time I got him tucked under a blanket in his chair in the den and took his temperature, it was 100.6. When I took my temperature later that day, it was 100.2 -- very high for me since my normal temperature is 97.5-97.8. We struggled through the next three days, trying to get food into our bellies that wouldn't cause more digestive issues, taking naps, and generally feeling miserable.

I was ready to go back to work on Friday when Ed decided to pass out in the bathroom at 2:30 a.m. He made so much noise I thought he had fallen down the stairs (which are located directly across from the bathroom). After getting him coherent and back into bed, he slept for a few hours while I lay there trying to calm my head and heart. He has determined that the reason for his lightheadedness was losing five pounds in four days. I have some reasons, but I'll keep them to myself. By Friday midday, both our fevers had broken, and we were able to eat some real food. Both of us now seem to have headcolds, with the accompanying congestion and coughing. But at least we're feeling much better. Ed rarely gets sick, and has only vomited one other time in all the years we've been together. I hope it's another 15 years before that happens again and I don't ever want to revisit the fainting.

I'm still waiting for word from Dr. Yamada on the skull mets that he didn't treat to find out if they are stable or not. I had to call again to remind his office that I'm still waiting. I spoke to Dr. K yesterday who was going to call the NJ oncologist to discuss the change in my treatment. She thought I should start this week, but I can't get anything scheduled until I know she has spoken to him. Followed up on that today and am awaiting a confirmation.

Other than that, nothing is new. I will let you know once I have my updated schedule. In the meantime, take care and watch out for those pesky viruses!

Down but not out

I've been quiet because Ed and I have been sick at home since Wednesday. We on our way to recovery, and I will be in touch again soon.

Post visit update

This morning we met with Dr. K and the visit went very well. She was very prepared, had reviewed my scans, and had a plan in mind but wanted to see how I was doing before she made her final decision.

She agrees with the radiologist that there is some growth, although with the nature of the scans it's impossible to say exactly how much. (The images are not always taken in exactly the same place, so it's difficult to measure mets with complete accuracy.) She agrees that there is measurable growth in the largest lung met (now 2.3 x 1.9 cm) and that Doxil is a failure for me. She considered sending me back to the thoracic surgeon to investigate surgery to remove the largest met, but since my health hasn't been that good and none of the mets are stable, she decided against it.

The new plan is to return to Gemcitabine (Gemzar) but to try a different infusion rate. The longer the infusion time, the higher the toxicity of the medication. A 90-minute infusion rate is "standard" for LMS patients, but I have not been able to tolerate a two-week on, one week off schedule at that rate because my white blood counts went below the 1.0 limit. Her suggestion is to reduce the infusion rate to 30 minutes, give me treatment once a week two weeks in a row with one week off, and see if my white counts recover in time. Otherwise, we'll try every other week at an infusion rate to be determined.

After I complete three cycles (one round or 9 weeks), I'll have scans again and we'll see what's happening. Her thought is that if the smaller mets are stable, she will send me to the thoracic surgeon to see about removing the largest met, whether or not that one is stable. That is not surgery I would look forward to, but it would decrease my tumor load and all of the largest tumors will have been treated or removed. That would be a good thing.

So, I'm back to Gemzar starting on February 19. I will also continue my monthly Zometa treatments and hopefully that will help strengthen my bones and help prevent any further bone mets. I will have another brain MRI and follow up with the radiation oncologist at the end of March, and will have CT scans in mid-April to check my lungs and the met that was in my pelvis.

I promised Ed and Dr. K that I would get an appointment with the ENT ASAP. So I'll be calling this afternoon. The bacterial infection seems to be gone. Keep your fingers crossed!!!

Before I close, I have to note how good it was to see everyone at MSKCC. I spent quite some time visiting with three of my favorite staff members in the chemo suite, and two of the staff in Dr. K's office. They are so caring and so interested in what's happening with their patients. It's a little weird to say that I miss my cancer "crew" but I do. I will actually look forward to seeing them again in April.

Thanks to all for your good wishes and for following this unending saga of mine.