Quite a week

Monday was a perfect example of a day when I should have stayed in bed with the covers pulled over my head. It began with pouring rain and wind gusts up to 50 mph, making my trek from the bus to the clinic at Memorial Sloan-Kettering on 53rd Street an adventure. When I arrived and finally got up to the lab, I was informed that the paperwork for my bloodwork wasn't available yet so I would have to come back. The tech told me to have the nurse leave my IV in from my CT scans (for the contrast injection) and a nurse in the chemo suite would be able to draw my blood when I returned. (We weren't using my port because I thought they needed to test my clotting factor. When they test that, they can't draw blood from the port.)

I couldn't wait for the MSKCC shuttle up to the new Breast Cancer Center because it would be leaving at 7:50 and my arrival time for my CT scan was 7:40. After standing in the rain for five minutes, I managed to grab a taxi and made my way uptown. I checked in and was given the solution I had to drink. Normally, you drink it over 45-60 minutes and then you get scanned. Hence, my arrival was scheduled for 7:40 with scans scheduled for 8:40. By 9 a.m., I was wondering what the heck was going on. I was finally called in at 9:25, and the nurse couldn't find a vein in my elbow, so she placed the IV in the back of my hand. That was okay as it didn't hurt -- then. When I finally got in for my scans (turns out one of the machines wasn't working that day) and they started injecting the contrast material into my vein, I started yelling. I have never felt any pain when the contrast was injected, but according to the technician, because the nurse used such a small vein, the contrast material was pushing against the wall of the vein and causing the pain, which went on for about three minutes. Doesn't sound like a long time unless you are waiting for the pain to end.

I finally finished my scans and left with the IV still in place. I had to walk a block and a half to the main hospital to pick up the shuttle, and was soaked from the waist down by the time I reached it. After 20 minutes of being stuck in traffic, I finally returned to 53rd Street and made my way to the chemo suite to have my blood drawn. Guess what? The nurse couldn't get a blood return from the IV. She said that often when contrast material is given (especially in such a small vein), it is so thick it prevents blood return. She checked the paperwork and discovered that my clotting factor wasn't being tested, so she drew blood from my port -- which I could have used for the scans as well, preventing getting stuck twice and eliminating the pain portion of the scan. At least I know that from now on, I can have my port accessed for the scans.

I hadn't eaten because I thought they were testing my cholesterol again (they weren't), so I finally got something to eat at 11 a.m. I headed for the bus back home, walked in the door, and got hit immediately with the diarrhea problem that the drink sometimes causes. At least it didn't hit me on the bus!!

Of course, it all turned out to be worth it. The large tumor in my right lung is stable as are most of the other lung mets. A mass in my chest, near but not in the lung, decreased the most. Two small possible metastases in my liver, seen for the first time on the November scans, are gone. The tumor in my pelvic bone that was radiated in November 2008 is stable. Yay! My rib fractures continue to heal, and the only one still bothering me is the one on the right side. That feels slightly better than when it started up almost three weeks ago, but there isn't significant improvement.

All in all, I'm very pleased. Apparently that large tumor is not going to shrink without a fight, so we'll be concentrating our "death to evildoers" thoughts toward that one for the next six weeks. This cycle will end on March 2, and I expect my scans will be scheduled for March 8.

Thanks to all for your e-mails and comments. I was truly touched by all the responses. You really do follow this blog, don't you??!!!

The results are in...

8% shrinkage!!!!!!! The large tumor in my right lung is unchanged, but overall I had 8% shrinkage in my tumors. I haven't gotten a copy of the report yet, but will post more once I've had a chance to read it. The news was so good, I wanted to get it up here ASAP. We are currently waiting to be called in for treatment (cycle 2, week 1), so I will post more later today or tomorrow.

Thanks for all the positive thoughts and prayers!

First cycle completed!

One cycle down, who knows how many to go! Everything went fine on Tuesday. It was good to have Ed back with me for company, and the pharmacy was on the ball. We only waited 90 minutes for the meds to be sent up to the chemo suite. My cholesterol continues to come down, albeit much more slowly, and while my glucose was up, it was well below the limit. I'm scheduled for scans on Monday and I'll be seeing Dr. K on Tuesday to hear the results. The nurse informed me that the two patients who started the trial the week before I did both had positive results. Sounds good for the rest of us!

Last Friday I had my Zometa infusion in NJ and spoke with Dr. Windsor about Ifosamide. He believes that it is the next treatment appropriate for me should the clinical trial fail. Although I don't agree, he suggested we table the discussion for now, since he believes the trial is working and thinking about another line of treatment is not something I need to be doing at this moment.

I continue to deal with the same side effects: acne, dry nose, eyes and mouth, and some fatigue. Otherwise, I feel pretty good.

Our broken treadmill was replaced, so now we have a treadmill to use. Unfortunately, there are some parts that need to be replaced because the incline mechanism is holding up, but we can still use it in the meantime.

I plan to take down all the holiday decorations starting today. I really enjoy the lights and the sparkles, so I tend to keep them up as long as possible, but even I think it's getting silly now. The house is going to look so bare...

Pain in the chest

This fractured rib is really painful today. I don't know why, since I coughed yesterday about the same amount as every other day. The worst part is there is nothing that can be done. I know that sometimes your ribs can be taped so they don't move, but this is in an impossible place to tape. So, I'm trying all my meds to keep from coughing too much and with any luck, it will soon feel better.

I forgot to mention that in addition to the raised cholesterol and fatigue, I've been experiencing very dry eyes, nasal passages and mouth. When I wake during the night, my tongue is literally stuck to the bottom of my mouth and my nose bleeds every time I blow it (which is frequently these days). Saline spray helps the nose a bit and drinking lots of water during the day helps my mouth, but it's a bit annoying. I'm also getting acne. Acne at 47!! Thank goodness they are little pimples that last a few days and disappear. One of the nurses told me that another patient in the trial had a huge pimple appear on his face. Would I prefer one huge one to five small ones? No, I think I'll stick with the small ones. These problems are worth the price, though, as long as the treatment is working.

It's hard to believe that next Tuesday finishes the first cycle. I'll be scanned on Monday the 25th, get the results from Dr. K on the 26th and then start the second cycle the same day. We'll see how badly the evildoers have been beaten down.

I'm thinking about purchasing a small humidifer for the bedroom so that my nose and mouth don't get so dried out overnight, so I might take care of that this weekend, and it's time for a root touch up. Other than that, no real plans for the weekend. My boss leaves on Wednesday morning for Montana, so I'll be back home for a short while. It will be nice to wake up without an alarm again.

Have a great weekend!

Late day

Yesterday's appointment with Dr. K was scheduled for 1 p.m., so I went in Monday morning to have my bloodwork done. It turns out that because I am in the clinical study, I cannot participate in the "Chemo Ready" program (you have your bloodwork done the day prior, then call the pharmacy two hours prior to arrival the next day and your meds are ready). However, if I have the bloodwork done the day prior and call the nurse, she will call in to the pharmacy ahead of time and the wait should be shorter. Yesterday I only waited an hour and part of that was due to no room in the chemo suite.

While I was seeing the nurse, I mentioned that my chest hurt where I had experienced pain following my thoracotomy, only now it was worse. As you may recall, the radiologist had reported that my last chest x-ray showed a rib fracture on the right side, but when I contacted the thoracic surgeon's office, I was told it was scar tissue. Well, I had another chest x-ray yesterday, and the radiologist once again said I have a rib fracture that is healing. Apparently last Thursday night, I coughed in such a way that I aggravated the area, which is why I am experiencing pain again. There is nothing to be done for a rib fracture, so I am hopeful that the pain will recede quickly, although it's been almost a week now without any relief.

The treatment went fine, but it was strange to be there without Ed. Since the treatment was starting so late, I knew it would be faster to take a bus out of the city rather than driving out, so I convinced him to stay home. I had no problems navigating the subway and Port Authority to get to the 5:20 bus, and I enjoyed a good nap on the way home. By the time I arrived at 6:45, I was ready for bed, so I took my Zetia and hit the sack -- no dinner, no conversation, no nothing. I am still sleepy this morning, but am feeling pretty good. Speaking of Zetia, it really does work. My cholesterol continues to drop. It is now down to 249 from a high two weeks ago of 319.

Friday afternoon I see the NJ oncologist and have my Zometa infusion. I want to discuss with him his alledged agreement with Dr. K that Ifosamide would be the next treatment option for me. I can't imagine what they were thinking, and I'll be interested to hear what he has to say.

I told Dr. K yesterday that I believed this clinical trial was working, and she actually laughed at me. I told her I wasn't kidding, that I really believe it is working and she looked at me as if I were nuts. Then she told me that another patient she has on the trial told her the same thing. I wonder if she laughed at her, too. Not a big surprise that I would like to change oncologists, huh?

On a non-medical note, the temperatures are finally supposed to climb out of the 30s and reach the low 40s starting tomorrow. I don't know how long that heatwave is going to last, but it will be nice to have a reprieve of sorts. I hope the weather is improving wherever you are!

Happy 2010!

So how do you refer to the current year? Is it twenty ten or two thousand ten? I was using the latter until I realized that until the change of the century, I referred to the date as nineteen ninety-nine, not one thousand nine hundred ninety-nine. Still, twenty ten sounds weird to me. Whatever you call it, I hope it's happy, healthy and full of fun, laughter and good friends.

I completed week four of the clinical trial yesterday with no issues. As mentioned, I am now on Zetia for my cholesterol, and I can report that it works. After three days of taking it, my cholesterol dropped from 319 to 269. I'm also pleased to report that my glucose is also down, so perhaps I'll be lucky and avoid having to take any medication for that. The nurse said I don't need to worry about it unless it exceeds 120. She also informed me that since the high cholesterol is caused by medication, changing my diet won't help so I guess I can stop worrying about eggs and cheese, among other things.

We waited 2-1/2 hours for the medication to be prepared, so I'm going to try to work around that in the future. Since they need to draw blood from my arm anyway (using my port requires flushing it with heparin first and that interferes with the clotting factor test), I'm going to go in the day prior and have the bloodwork done. Then they can begin to prepare the meds as soon as the pharmacy opens on Tuesday morning and our wait should be reduced (theoretically) to almost nothing. I'll let you know next week how that works out.

It's still mighty cold here in the northeast. The temperatures are supposed to be in the mid-30s today and tomorrow, but then we are expecting some snow activity Thursday or Friday, and it's supposed to be bitterly cold over the weekend. I think I'll be staying inside!