More appointments, more info

On Monday, I met with Dr. Healey, my orthopaedic surgeon, for my six month follow up. My ankle is fine and he agrees that the pain in my back and leg is from my sciatica nerve. The question is what is pinching it and where, and the MRI of my spine (scheduled for August 25) should answer that question.

We discussed at great length his opinion on lung surgery to remove one/several of my metastases. He reiterated that the gold standard for leiomyosarcoma is to cut it out. That's the only way to potentially "cure" it. So, if the scans I have at the end of August show no new tumors, he believes the surgery should be done. He doesn't believe that stability in the lung mets matters, only that there are no new tumors anywhere else.

He also likened the fight against cancer to a baseball game. Where most other sports (other than cricket) are set against a clock, baseball can go on forever. Similarly, your survival with cancer should not be boxed into a time frame. You can play as long as possible and even get extra innings, so if you have a strong spirit, and relatively good health, you should plan to stay in the game as long as possible. He said he's known of patients who have had up to eight lung surgeries because their general health and lung capacity remained good. I told him I was nervous considering one lung surgery, let alone multiple, but I suppose it can be done.

My appointment with the thoracic surgeon is scheduled for Wednesday, August 5, in New York. We will see what he says. I'm hoping, if he agrees to do surgery, that we can put it off until mid-October, when some personal events we would like to attend and some upcoming business items can be taken care of before I'm down for the count for several weeks. I don't like the idea of being on a chemo that obviously is no longer working for me, nor would I want to be off chemo completely, but that's something we'll have to hammer out.

Speaking of chemo, my treatment went fine yesterday although I was a bit disappointed that my hemoglobin had only climbed from 9.7 to 10.1 over two weeks following the shot of Arenesp, the red blood booster. Dr. Windsor informed me that it sometimes takes two or three treatments before a boost in the counts is seen -- despite Kathleen, the chemo nurse, telling me that shot should last for up to three months. I guess she was thinking positively, and Laura, the other chemo nurse, is going to be rubbing her hands together in glee that next Thursday they will have to shoot me up again. She loves to torture me. Lest you think that she really does get her kicks from sending me into a tizzy, this is the same woman who yesterday brought me in a special Sleeping Beauty bandaid for my port after treatment. They know that I go home and hit the sack for a long nap, so she brought me an appropriate bandaid. They are both caring, thoughtful, chop-busting nurses, and treatment would be a chore if it weren't for those two. Thanks, ladies!

I will be back late next week after my appointment with the thoracic surgeon and my treatment to bring you up to date. Hope you all have a wonderful weekend, and thanks, as always, for keeping me in your thoughts.

Bon voyage!

I meant to include a bon voyage to Kate and Steve in my post yesterday, but I forgot. Safe travels and happy sailing to you! Have a wonderful time in the Med and enjoy your extra days in Athens. I can't wait to hear your opinion of the new museum. This makes how many Mediterranean cruises after the "once in a lifetime" trip? LOL Have fun!!

Feeling better

After a few days of feeling very down and discouraged, I'm feeling better about moving forward. It's frustrating that we won't have an opinion on potential surgery for another two weeks, but I don't want to have surgery before September anyway, so I'll just have to be patient. Sometimes that's easier said than done, but I'll try.

Thanks again to all who have written me or posted comments to this blog. Your kindness, thoughtfulness and love really humbles me, and I'm grateful for your support.

Follow up

Dr. K called this morning. We discussed the left hilar lymphadenopathy in my left lung, which she described as a collection of lymph nodes. She explained that the increase in size could be due to an infection or inflamation (although if one has metastatic disease, malignancy is always the first assumption), and that the reason the radiologists did not mention it prior could be because they don't report on it until it reaches a certain size (perhaps greater than 2 cm). She said that these "surprises" appear on radiology reports from all facilities, including from Memorial Sloan-Kettering's in-house radiology department, and that is why she is now reading my scans herself.

As far as potential lung surgery, she is unsure what Dr. Flores will choose to do at this point. She will discuss my case with him before I see him on August 5 and then talk with him again after my appointment. Where after my April scans she seemed confident that he would suggest surgery, she now seems less certain. We won't know anything more until the 5th. She also mentioned that should he choose to do surgery, I'll have to have a PET scan first and that will show which of the lung nodules may be tumors and whether the lymphadenopathy is malignant as well.

In the meantime, I am to continue on Gemzar, and my next treatment is the 30th. We will try to remain patient and positive until the 5th.

Thank you for your notes and e-mails. They make a tough situation a little easier to bear.

Not good news

I received a copy of my scan report on Thursday at the NJ oncology facility but Dr. Windsor is on vacation this week so we didn't discuss it. I sent an e-mail to Dr. K's office on Tuesday to notify her of my scans and to expect the report, and hadn't heard anything back by Friday. Friday afternoon I called and left a message, but didn't hear back.

The report indicates that almost all of my lung mets have grown, one by 34%, and refers to a large met in my left lung that had not been mentioned since early 2008. In fact, on the last two scans, the radiologists indicate there is "no evidence" of the met, but this report indicates the met grew from the previous scan and is now more than 2 cms in size. To write that Ed and I are angry and confused is an understatement and with no one to discuss the results with for at least another day, we are trying to enjoy the weekend and leave the frustration for tomorrow. I don't know what this does for my chances for lung surgery, but I'm guessing that the window of opportunity may have just slammed shut.

I don't want to speculate any more and would rather share the facts, so I will post once I have spoken with Dr. K. Thank you, as always, for keeping us in your thoughts.

Chemo, scans, and doctors

Last Thursday's chemo appointment turned out to be a trial. First, the nurses couldn't get bloodflow from my port. They shot in some Heparin to clear out any clots and after waiting 20 minutes tried again -- nothing. They shot in some more and took blood from my arm so they could get my blood counts. Meanwhile, I started coughing and just couldn't stop. It went on for an hour, all through the port problems, the blood draw, my 30 minute wait to see the doctor, and my doctor visit. By the time I got into the chemo suite, I was ready to start crying. The good news is my counts were good and they finally got a blood draw from my port (there must have been a clot at the end of the catheter). I was so wiped out from the stress by the time I got home that I went directly to bed and slept for two hours. Had they not been able to get a blood draw, they would have sent me for a portogram, during which the port would have been filled with dye and then scanned to see if there was anything blocking it. Thank goodness we didn't get to that point.

While I was meeting with Dr. Windsor, we discussed the need for another bone scan. It's been almost a year, so we decided to go ahead with it. I will have it at the end of August on the same day I have my brain MRI. I will have my spinal MRI the following day, because scanning the entire spine requires two injections of contrast material, and they will only give two a day. Therefore, they can't do the brain and the total spine on the same day.

Yesterday I went into the city and had my CT scans of the chest, abdomen and pelvis and I expect to get a copy of the report when I go in for chemo on Thursday, if not sooner. I also had x-rays of my ankle for my follow up appointment with the surgeon on July 27.

As I mentioned previously, my appointment with the pulmonologist was scheduled for August 18. Dr. Grabowy spoke with Dr. Pristas and apparently told him there was some urgency, so I was given an appointment yesterday, on Dr. Pristas's normal day off. After speaking with him about my history, I was given a series of lung tests (my lungs are in very good shape) while Dr. Pristas reviewed my April scans. It is his opinion that the largest met, which is located in my right lung, is causing my cough. He prescribed a medication that supresses the need to cough and also prescribed a cough syrup for when the coughing doesn't stop after 30 minutes. Of course, when that happens, I'm likely not to be near the cough syrup, but it will help while I'm home. I just started the pills, so we'll see what happens. I have a follow up with him in two months, but we'll have to see what the thoracic surgeon has to say about removing that met. At least we would be resolving two problems with one surgery.

I will be having chemo on Thursday and Zometa on Friday. Otherwise, the summer is racing by and I feel like I haven't gotten anything done. Hopefully tomorrow I can get working on another room and then I can pick up my cleaning next week after the chemo effects wear off.

I hope you are all enjoying blue skies and not too hot temperatures!

A new week

Hope everyone enjoyed the July 4th weekend. We began it early by celebrating Ed's birthday on Thursday with a four-layer chocolate cake. Yummy! Friday our friends Sue and Frank came over and in between the raindrops we were able to enjoy the pool. Ed got the heater going early and it was 90 degrees by the time Sue and I got in. Too warm for the men, but just perfect for the ladies. Saturday our neighbors came over with their two daughters, who spent a solid 3-1/2 hours in the pool. I'll bet they slept well that night! Yesterday we ran some errands and then hung out by the pool for the rest of the afternoon. All in all, a relaxing weekend.

I apologize to those of you who have e-mailed me and not received a response. I'm on the computer so little when I'm home that I'm behind in my correspondence. I promise to be in touch soon. I'm thinking of you, though!

Nothing exciting on the schedule for this week other than chemo on Thursday. I'm waiting to hear back from Dr. Grabowy. His assistant told me he had called the pulmonologist to see if he could squeeze me in before August 19, but hadn't connected with him yet. I'll let you know what happens.

Hope the good weather continues here. Two days in a row without any rain -- must be a record! Have a great week!