So frustrated

Every day I get a little more frustrated over this situation. How could so many doctors looking at so many scans not know what to expect when they opened me up? I know the scans won't show everything, but not knowing that two of the nodules were close to or attached to major blood vessels? Not knowing anything about the tumor that is supposedly wrapped around the superior vena cava? How is that possible? I will expect a full explanation from Dr. Flores when we see him on November 4. I feel like I'm going through all of this recovery for nothing. He opened me up essentially for nothing. What a waste of time, money and energy, to say nothing of the damage to my spirits.

We see Dr. K on Friday to discuss chemo options. I have to do some research this week so I'm prepared. I am familiar with some of the options available, but I also know there are some clinical trials she may recommend. I'll post an update after that meeting.

In the meantime, I'm getting in my walks each day (took off on Saturday) and have been off the pain meds since Friday night. I have quite a bit of discomfort along the incision site, and now that my cough is back in full force, my ribs and side are sore as well. I feel a little better each day, but wish that this recovery had been for something we had accomplished.

Thanks for all the good wishes. They truly help.

It's good to be home

Just a brief note as my right side is not cooperating as it usually does.

I got home late Wednesday afternoon and went right to bed. Slept for four hours, was up for an hour, and went back to bed until 6 a.m. Yesterday I basically rested, although I did do my mile, and I had a visit from Lydia G.

This morning I had my first shower and we removed the pressure bandage that was over the chest drain incision. It feels good to have that off, because it was very tight. Now I just have steri-strips, over what I am assuming are dissolving stitches. My follow up appointment isn't until November 4, which seems way too long if there were stitches to be removed.

Needless to say, I am very disappointed that the tumors could not be removed. I'm also more than a little surprised that with all the modern imaging machines in use today, no one knew that there was a tumor wrapped around my superior vena cava nor that two of the tumors were sitting on/next to major blood vessels. Don't get me wrong: I'm very pleased that Dr. Flores made the decision to close me up rather than remove what he called a very healthy lung (other than those tumors). I just wish he hadn't had to open me up in the first place if there was nothing he could do. I still have to go through the recovery period, take the pain meds and miss work, and I'm not really getting a payback from that.

I'll try to get back tomorrow to write more, but I need to go stretch out for a little while right now and take a nap. Thanks so much for all of your e-mails, calls, cards, prayers and positive thoughts. They worked!

We're all set

My surgery is scheduled for 9 a.m. on Monday. I have to arrive at the hospital by 7:30. The nurse, during the presurgical call, assured me they can access my port to start the meds and if they need a bigger vein, they can access it in the operating room after I am asleep. Yay! No digging around in my arm. I'm very pleased with that news. After they start the IV, they will take me to another area for the epidural. She assured me that I will already be feeling relaxed and sleepy, and that after the shot to numb the area, I will only feel pressure as they insert the catheter. The epidural will remain in place until I leave (which should be Thursday). It will continually provide pain medication to the nerves on the right side of my chest where the surgery will be performed.

The thoracotomy is scheduled to last three to four hours. I will spend the rest of the day and the night in the recovery room (or the fancy new name, PACU) where they can monitor me before sending me up to a room. Once I am in my room, they will immediately put me upright in a chair. After breakfast, they will essentially kick me out with a specialized walker and start me on my first mile. I will have to practice my deep breathing and coughing throughout the day, and continue to walk as much as possible.

I have all my pjs and toiletries laid out so all I have to do is stick them in a bag for Ed to bring me on Tuesday. Yesterday's shopping trip with Sue was a big success, with four pairs of pjs and a new pair of slippers purchased, not to mention a bed tray. I can't believe how expensive pjs have gotten -- the first ones we looked at in Macy's were $54!! I finally found some decent looking ones in JCPenney on sale for $24. I guess I haven't been pajama shopping in a loooong time.

I still have to charge up the cell phone and find out if the hospital has WiFi, but other than that we are ready to go. It's hard to believe that after tomorrow I'll be missing a part of my lung, but I know that I will recover well and won't even miss it after a few weeks. Besides, it's being sacrificed for a good cause -- my greater health.

I'll be back in touch as soon as possible. As soon as I can make it back to a computer, either at the hospital or at home, I'll post a note. In the meantime, take care of yourselves and know that I love you.

I am humbled...

I wish there were some way to adequately express how much all the e-mails, cards, and phone calls of support mean to me. I am so amazed and humbled by the amount of love, friendship, kindness, and thoughfulness I have received this week. It means so very much to me and truly gives me a sense of positivity that this surgery and the recovery will go well. I know it will not be easy, but knowing that so many people are pulling for me makes me want to work that much harder. Of course, getting back into my own bed is a big incentive as well! LOL

From the bottom of my heart, thank you so very much. I'm sending love and friendship back at all you. I hope you can feel it.

Getting closer

We enjoyed our anniversary and have gotten off to a good start on our 22nd year. We went out for dinner Thursday night to celebrate, then had dinner with friends both Friday night and Sunday night. You would think I'd be gaining weight with all this eating out -- not to mention the 10" cheesecake Ed bought me for our anniversary. Unfortunately, I'm not. Ed's goal -- and the goal of a few other friends -- has been to fatten me up prior to surgery, but it's simply not happening. I'm sure it's partly because of nerves. I've got a twitchy stomach these days, and trying to interest it in food is not going too well. I'm hopeful that after the surgery, once I'm done with the pain medications, my appetite will come roaring back. Let's keep our fingers crossed.

I'm trying to wrap up some loose ends around here before next week. I've arranged to have my nodules (let's assume they are LMS tumors) sent out for molecular profiling to see to which chemotherapy agents my cancer is resistant or sensitive. The chemo-resistant profiling is considered fairly accurate, while the chemo-sensitivity is less so. However, this should help us and Dr. K determine what agent(s) to try next, since Gemcitabine no longer works and we already know that Doxil didn't help.

My surgery has been authorized by the insurance company, and I found out that most of the molecular profiling will be covered as well. While I'm in the hospital, I'm going to arrange for a visiting nurse to come to the house at least the day after I get home to make sure everything is okay (dressing, pain meds, etc.). I'm going out Saturday to pick up a few things: new slippers for the hospital, a bed tray, and button front pjs. My friend Kay gave me that last hint, and while I have flannel pjs that button up the front, I think it's not quite cold enough yet for them. I'm going to look for some cotton ones, and the button front should make it much easier to get in and out with the stitches and dressings.

Ed, who you may know is not a computer wizard, will nevertheless attempt to send out a group e-mail either Monday evening or Tuesday morning to let you know how the surgery went. I wish I could teach him how to send it out as a BCC so your e-mail addresses wouldn't show, but I think that's beyond his grasp. If you don't want an e-mail, please let me know and I'll take you off the list. I don't know when I'll be up to e-mailing again, and I wanted to make certain you were up-to-date in some way. Maybe I can convince him to send an update later in the week. We'll see.

Other than trying very hard to quell my anxiety, there is not too much going on here. The weather for the next four days is supposed to be terrible -- rain, wind, and temperatures in the upper 40s for highs!!! Is this really mid-October?? It's our first nor'easter of the season, and I'm very happy I'm not commuting in this weather.

I hope that the skies are sunnier wherever you are!

Much Ado About Nothing

My stress test turned out to be an anticipatory stress test. I was so worried about the IV and the treadmill that I stressed myself out (per usual) and it turned out to be a breeze. The nurse gave me a warm compress for my arm and was able to get right into a vein, and the treadmill part was easy. I was breathing heavy but still able to carry on a conversation. In fact, when they slowed the treadmill down, I thought that was just the first part and they were going to run it faster and at more of an incline. Nope, I was finished -- and in under three hours.

Here's how the morning went: I arrived 10 minutes early, filled out the required paperwork and then sat and waited for 20 minutes past my appointment time. A "technologist" (yes, she actually referred to herself that way) came out to review my form (9:20 a.m.). Then I was called in to have my IV line started and receive the injection (10:05). Then I had to wait 30 minutes until they could take the first scan of my heart. Afterward, I had an electrocardiogram (along with my blood pressure) taken as I laid down, sat up and stood. Then I walked on the treadmill at a modest pace while they took another electrocardiogram. They increased the incline and the speed and then injected me again and took another electrocardiogram. After that, they waited until my pulse returned to normal and sent me to the waiting room until my next scan (11:30). Fifteen minutes later, they called me in for the scan and then sent me packing (12:05). I, of course, went immediately to the deli and got a sandwich.

This stress test sounds different from the stress tests I've heard about. First, there was no point at which they said I could eat anything. I was informed that eating draws blood away from the heart and to the stomach, so no food until the test is completed. Also, this clearly doesn't take five hours, unless you spend even more time waiting between the different activities. Third, there was no point at which I thought I wouldn't make it through the treadmill portion. Maybe those daily walks are helping!

My spa retreat on Saturday was wonderful. It was a little weird talking with strangers about my cancer, but there was a woman who loved to talk (actually a few) so she took the pressure off the rest of us. After an hour of talking, we drove over to the salon for our treatments. I had a pedicure, a manicure, a massage and a mini-facial, and they were all a treat. The women at the salon who volunteered their time to pamper us were all lovely, and I'm truly grateful to A Time for ME for sponsoring this day spa. It was a relaxing afternoon, and as you can see, my nails and toes look beautiful. I really went out on a limb with the polish color, which Ed calls either burple or purgandy. (In the photo, it looks like a light burgandy, but I assure you, it's dark burple.) It's quite a change from my usual pinks or neutrals.

Nothing else happening this week except for a celebration on Thursday of being married for 21 years! There have been times when I thought we wouldn't make it another day and I know Ed felt the same way -- maybe at different times -- and there are days when we make each other crazy. But after 21 years, he still makes me laugh, we still always find something to talk about, and he's still my rock. I never would have gotten this far through this fight -- or through this life -- without him, and I am truly blessed to have him as my husband. I'll have to ask him if he feels the same way. He says yes (good thing he did). :)

I hope you all have a good week!

Waiting, walking and inhaling

I'm not enjoying this wait. I try not to think about all the things that will happen surrounding this surgery, but I can't help it. I'm not getting anxious or panicking, but it's certainly on my mind. Last time I only had four days to worry about surgery. Three and a half weeks is too long to wait. Remind me not to schedule it so far in advance next time, okay?

I've been walking every day (except last Sunday) and I can't say I'm enjoying it. First, our neighborhood is BORING. Other than some really weedy, messy, overgrown yards, there is nothing to look at. Second, so few people walk around here that homeowners look at me like I have something strange growing out of my head. They seem not to be able to process that I'm just taking a walk. Third, it got cold. I started off last week in shorts and a t-shirt and yesterday I was still chilly in heavyweight sweatpants and a hoodie with a long-sleeve shirt and a hat. What happened to the warmer weather? We were about 15 degrees below normal yesterday. The high was 55. Yikes! Despite the chilliness, I'm still walking my mile or so. I started at 2,075 steps and I'm up to 2,435. I'd like to do a little more each day.

I'm also trying to use the spirometer four times a day. I was doing pretty well there for a while, getting it up to 1250 75% of the time, but the past two days I can only inhale it up to 1000. Guess those lungs still need a lot of work.

Tomorrow, thanks to my dear friend Kate and her friend Toni, I will be enjoying a half day of pampering. Toni volunteers for A Time for ME, an organization dedicated to "caring for women with cancer" (http://www.atimeforme.org/index.htm). They offer various weekend, day or half-day retreats, and I was lucky enough to be invited to attend tomorrow's spa retreat. I'm looking forward to a massage, a mini-facial and a manicure. Sounds like just what the doctor ordered. Thanks Kate and thanks Toni!

Monday is my nuclear stress test. As you can guess, I'm really looking forward to that, especially the IV part. I can't eat or drink anything for four hours prior to the test, so I'm going to grab a bowl of cereal and drink some water before I leave for the bus that morning. That way I won't be dehydrated and it should be easier to find and get into a vein. I'll let you know all about that experience next week.

In the meantime, have a great weekend. I hope it's warmer wherever you are!