Posted by Stephanie 10:30pm CST from the apartment, Houston, TX

Well, it’s that time. Surgery is tomorrow and I don’t like it. Sammy asked me a few days ago what I was dreading most about the whole process. I asked him to guess, and he said, “Post-surgical pain?”, which of course makes sense—who wouldn’t dread that? But no, what I’m dreading most is that awful catheter I’ll wake up with. I HATE IT. It’s pretty much the most inconvenient and irritating thing I can imagine, and they’ll keep it in for days. Ugh. Anyway, enough of my complaining, here’s some more info about all things surgery-esque.

I’m sure I’ve discussed before my previous surgeries all that happens immediately pre and post-op, but it’s always an interesting rundown to give. The day of surgery you use a special soap they give you to wash with from your neck to waist, and after showering, you cannot use any lotion, perfume, or even deodorant. Great, I’m gonna smell just awesome laying on the operating table. Once I’m in the prep room before surgery, I get to don a hospital gown, those ever-so attractive thigh-high compression stockings and a paper shower cap. Only one person is allowed back there with me at that point, so Sammy will sit with me while anesthesiology comes by to start an I.V. (they’ll use that in addition to my CVC line) and give me a mild sedative. Dr. Swisher will also stop by briefly, make sure everything’s in order, and then when they’re ready for me, Sammy will head out to the surgical waiting area and they’ll wheel me back to the frigidly cold operating room. I have to still be conscious at that point so that I can hunch over into the proper position when they go to insert the epidural, which will help post-operatively with pain. When that’s done, they’ll lay me down and knock me out. Once I’m unconscious, they’ll intubate me, insert the catheter (BOO), a chest tube, and smaller chest drains. I’ll be given a dose of antibiotics while I’m out, plus any blood if it’s needed during the procedure. They’ll also periodically do blood gas level checks, which involves more needles, fun times. Next comes surgery, which I already discussed yesterday. Post-operatively, they’ll hopefully take out the breathing tube before I wake up—I’ve never had one in while I’ve been conscious but I hear it’s not much fun, with the constant gagging feeling and all. When they wake me (hopefully already pumped full of pain meds), the surgeon will be right there to let me know how it went. I never really remember much from that conversation, since I’m totally in a horrid medication-fog. Eventually everyone can come back to say hi, and once I’m given the okay by the PACU (post-anesthesia care unit) staff, they’ll wheel me up to my room.

Today the gang headed to Galveston Island for some much needed time away from the hospital. We had lunch at Willie G’s, our favorite seafood spot (though I don’t eat seafood), and walked through the shops in the historic strand district. We also drove along the beach side of the island before heading back into town for our pre-surgery tradition of dinner at Buca di Beppo’s. I’m telling you, we had SO much food on that table. It was ridiculous, and delicious. I thought a pigout meal was necessary, seeing as how I can’t have anything to eat or drink after midnight tonight, and I won’t be eating much of anything for a couple of days after surgery. We also had some Hank’s ice cream—it’s gotta be good luck before a procedure!

Okay, it’s bedtime……if I can sleep. I usually can’t the night before surgery. My report time it 10:30am tomorrow. If everything is running smoothly, and I get back to the prep area on time, the procedure is supposed to start 1-1 1/2 hours after check in, so probably around noonish things will actually get started. Make sure to send some prayers and good vibes our way about that time. We would greatly appreciate them. Obviously I will be too out of it to post on here for at least a couple of days, but Sammy has said he’ll do periodic updates during surgery, and then he’ll give a longer rundown later on. Here’s to the end of those pesky cancer spots!!

--Steph

Posted by Stephanie 10:30pm CST from the hotel, Houston, TX

Greetings from warm and sunny Houston. Sammy and I got down here late morning on Sunday (after waking at 3am to get ready and catch a super early morning flight) and got settled in to the extended stay hotel after grabbing a quick lunch. We actually tried Texas BBQ for the first time…yes, I know, it’s sad that we’ve been down here off and on for four years and hadn’t had it until now. We had dinner Sunday night with Joe and Sarah (always a good time) and then collapsed in exhaustion from all the travel and activities. My mom flew in yesterday morning, and Sammy’s mom arrived that evening. The last person in our surgery squad to arrive was my sister, Angela, who got in earlier this evening.. She was supposed to be here hours ago, but the hurricane currently cutting up the eastern half of the country, plus airplane maintenance issues have kept her from getting out here on time.

Yesterday and today have been filled with hospital appointments galore. Yesterday morning I had a pulmonary function test—basically that means I had to sit in a little glass phone booth looking thing and do various breathing exercises into a tube while a computer records the results. It’s never a big deal, although the part where I have to pant like a dog is always rather embarrassing. After that I had bloodwork and a chest x-ray, then had a chest CT scan later in the afternoon. I had an appointment with Dr. Benjamin immediately following my CT scan, and thanks to the magic of technology, he was able to check out my scan right away. It hadn’t been read by a radiologist yet, so there wasn’t an official report to check out, but from what Dr. Benjamin could tell, it didn’t look as though the lung nodule had changed at all. Not smaller, not bigger, just stable. That was a little disheartening to me, but Dr. Benny didn’t seem worried at all. He said it still means it’s working, because for me, my tumors grow very aggressively and rapidly, so the fact that it’s not changing is good news. He also theorized that it might not be shrinking because the nodule could already be dead in there, and therefore wouldn’t respond any further to treatment. No way to know for sure until it’s removed and studied by the pathologist. That was about it for his part in things, since it’s the surgery that brought me down here. Basically I was just checking in with him to let him know the two rounds of chemo done at home went fine and see when he wanted to start post-op chemo.

This morning I met with cardiology—it had only been four months or so since I saw them last, but with surgery coming up and my history of post-op cardiac issues I needed to check in with them. Following that, it was finally time to see the surgeon and get all the details. Seeing as how this is my third chest surgery of some kind, Dr. Swisher knows me and my case well, and he didn’t waste any time in getting down to business. He said the lung nodule is in the middle of the upper lobe on the left side, so he should actually be able to go in through the incision I already have on my back from my last lung surgery. After doing a wedge resection to remove that, he’ll cut just the diseased section of the affected rib (also on the left side) and remove it, leaving most of that rib intact. I’m kind of weirded out by the thought of having a chunk of rib missing—what happens if one of the sharp ends where they removed it ends up puncturing a lung in the future? That’s probably ridiculous, but those are the kinds of strange things I worry about. Dr. Swisher also said that since this is a repeat surgery on the same lung, that my lung may take longer to recover this time around. I guess that’s understandable. Hopefully good nutrition and some supplements will help my healing process. We also got an official report of the CT scan from yesterday, and sadly, it says that the official measurement and comparison of the lung nodule now vs. September shows that it’s now slightly larger. Grrrr…..anyway, surgery should last about three hours, and then they’ll keep me in the recovery area for another couple of hours before taking me up to my hospital room. Dr. Swisher expects me to be in the hospital 5-7 days, and then as long as things are going well, he won’t need to see me again until a month after surgery. I can head home whenever I’m feeling up to traveling—he said he likes people to stay in town at least a day after discharging from the hospital before heading out, but really, am I going to feel like traveling 24 hours after getting out of the hospital? I think not. I’m hoping to make it home before Thanksgiving.

My last appointment of the day was with anesthesia. They have a questionnaire a mile long that you have to fill out. ‘Are you right handed or left handed?’ ‘Can you walk up two flights of stairs without getting winded?’ ‘Can we have your first born child?’…….you get the idea. We made sure to remind them what pain meds work and which ones cause itching or other not-so-great side effects. We should be all set for Thursday. I have to call tomorrow afternoon to get the exact surgery time for Thursday. I’ll post it once I know.

In other news, we have landed ourselves an apartment. I put our name on the church apartment ministry list a couple of weeks ago, just in case something came open right when we needed it. The minimum length of stay is two weeks, and we will probably be here about two and a half, so unless we got a call right away, it wouldn’t have worked out. I never thought everything would line up just right—I figured we’d be stuck in the extended stay hotel the whole time. Well, this morning I got a call from the church contact for the last apartment we had. He originally told me he had the same apartment we just vacated two months ago available, but it turned out to be the apartment exactly above that one. Either way, it’ll work out great—good internet connection, a kitchen with more than just one pot and pan (and no cooking utensils at the hotel either), and a cost of $35 a day instead of the nearly $70 we’re paying daily here at the hotel. Hooray. I haven’t seen the place yet, since it was Sammy and his mom who went and signed for it while I waited for an appointment at the hospital, but he says it’s nice. It was too late today to check out of the hotel, so we’re doing that tomorrow and moving stuff into the apartment.

I have absolutely nothing on the schedule tomorrow, since that was originally my surgery date before it got moved to Thursday, so I think the whole gang is headed out to Galveston for the afternoon. It’s supposed to be 80 degrees and sunny, so it’ll be a great day to get out of the city and enjoy the coast for a little while. Tomorrow night is the big traditional pre-surgery dinner at Buca di Beppo’s. Nothing like stuffing your face with lots of Italian before going under the knife.

Speaking of stuffing your face, I’m currently stuffed from eating delicious tex-mex and super tired after being at the hospital all day. Bed is looking really good right now. I’ll be back on tomorrow to finish filling in the surgery details and give the official surgery time. Till then, everyone sleep tight.

--Steph

Posted by Stephanie 9:55am from the house

Wow. It's November already. Time flies when you're having fun....only, I wouldn't really call it fun, I'd just call it existing. There hasn't been a ton going on, but let's have a little recap.

I'm finished with the last round of pre-surgery chemo. Woohoo! The second half of this round was a little tougher than previous ones have been. I actually had quite a bit of nausea that started during the Day 8 infusion and lasted for the next couple of days. There was the Neulasta achiness, of course, though it came a day later than it should've since I managed to forget to go for my Neulasta injection on Day 9. Just totally forgot. Thankfully, mom texted me to ask how it went, and that's when I realized I hadn't gone. First thing the next morning, my sad and sorry forgetful behind was at Dr. Romer's office for that shot. No harm done. Later that weekend I did experience something that hadn't happened in awhile--tachycardia and shortness of breath. Those two things used to be a common occurrence when I was on Ifosfamide, but it's been about a year since I've had to deal with them. I had almost forgotten how much those side effects can interfere with everyday life. Sammy and I went to the mall to get some autumn-y candles, and I couldn't stand in place for more than two minutes or take more than a couple of steps without needing to sit down and rest. Lame. I figured my hemoglobin was low--that's what used to cause this problem in the past--but last Monday's bloodwork showed my hemoglobin to be fine. 8.6, which is low, but not low for me. So, I'm guessing the tachycardia and shortness of breath were just part of the chemo side effects. I wondered why those things (plus the nausea) were happening now, when they haven't up to this point--Sammy thinks it's the accumulation of the chemo causing things to get a little nastier. Certainly makes sense to me--the more of any particular chemo agent I have and the longer I go through it, the more it builds up in my system and causes problems. The same should be true for my platelets, yet somehow I managed to avoid transfusions every round. This time they were as low as 18, but bounced back beautifully. Go platelets!

So now that I've finished the last chemo cycle, the next step is surgery. Hard to believe that my seven weeks at home are almost up, but there's no denying it now--Sammy and I fly down to Houston early this coming Sunday morning. I've got tests and scans on Monday and Tuesday, plus I'll see Dr. Benjamin, Dr. Lenihan (my cardiologist), Dr. Swisher (my cardio thoracic surgeon), plus the anesthesia team. I'll outline all that's going on in more detail later in the week. My mom will fly down Monday to join Sammy and I, and then my sister and Sammy's mom will be coming down sometime on Tuesday. My surgery was initially scheduled for next Wednesday, November 11th, but I got a call on Monday morning informing me that my surgery had to be pushed back because Dr. Swisher, who is the head of the department, had a department-related activity come up that was unavoidable. So, surgery is now Thursday, November 12th--mark your calendars!!

Not surprisingly, I'm anxious about surgery, though by now this is starting to sadly feel routine. I won't know exactly what the surgical plan of attack is until I meet with Dr. Swisher next Tuesday. I'm hoping they can do a wedge resection for the lung nodule, and just take a small segment, but it depends on exactly where the nodule sits in my upper lobe, and if it's easy to get to. Then there's the rib--the spot inside my rib isn't terribly large, but they're probably going to take the whole rib anyway, so that I don't just have a chunk of bone missing with nothing to replace it. But, like I said, I won't know anything for sure until right before surgery, which is frustrating--I don't like being in the dark about stuff like this!

On the upside, Sammy and I are both looking forward to being back in Houston for a little while. I've only been gone seven weeks, yet it feels like an eternity--I can't imagine how Sammy feels, since he hasn't been down there since July. We're going to get together with Joe and Sarah, and despite the busy schedule at the hospital, the whole gang coming down will have time to do some fun stuff and eat good food before surgery. And, it'll still be nice and warm down there. It's been great to be home for some crisp, fall weather, but now that the colorful leaves have dulled and started to fall off the trees, southwest Ohio is starting to get that bare, desolate look of winter. Ick.

Okay, so aside from all the medical stuff, things are okay. I'm cramming in as much time with friends and family as I can this week, while still trying to find time to continue the housework and work on gathering up stuff for the trip. Sammy and I would love the house to be nice and neat and clean when we leave, so that when he gets back (and I follow a couple of weeks later), there's not a mountain of stuff to be done. I'm so thankful that this chemo combination leaves me with enough energy to be somewhat active. I'm certainly not running a marathon, but I'm also not stuck on the couch all day every day. I've been able to do walking workout videos almost everyday, which has certainly helped to strengthen me for surgery. It hasn't helped me lose weight like I had hoped, but on chemo your metabolism is so screwed up that I could eat nothing but celery and run 10 miles a day and it wouldn't change anything. Frustrating. Anyway, it's been nice to have some semblance of normal (though my normal is WAY different than most people's!). I still feel a lot of the time like I'm sitting on the sidelines watching life go by. There's still a lot I can't do physically, and of course a ton of things I'm missing out on. I can't work, Sammy and I can't make big plans for the future, since I never know when I'll be getting chemo, how I'll be feeling or if I'll be in Texas or Ohio.....I can't even do simple things sometimes like play outside with Austin, our nephew. He turned 1 the weekend I was feeling rough from chemo, and I had to sit on the front porch at the in-laws most of the time and watch Sammy roll around on the ground, play with and chase him, since I couldn't. Being tired of all of this, and wanting my life back is not a new feeling--we are, after all, going on four years of dealing with this, but it just never goes away. I keep praying that this time will be the last time, and that soon I will be well and whole, once and for all.

Time to get moving and be productive. This pile of laundry isn't going to wash itself. Be back on later this week and, of course, all throughout the surgical adventure next week. Take care.

--Steph

Posted by Stephanie 11:30am from the house

I'm excited to say that today is my last chemo treatment until after surgery next month. Woohoo! On the flipside, it's the Day 8 treatment which will leave me feeling awful here in a few days, but I'll get through that just fine, and I've even got an extra week tacked on to recover before surgery.

Day 1 of this round went off without a hitch--white count was thankfully back down into normal range at 8.6. Hemoglobin is hanging steady (though on the low side) at 9.0, and my platelets rebounded nicely back up to 142. The low hemoglobin makes me more susceptible to cold weather than the average person. That level has been much lower in the past--I existed for almost two years in the 7-8 range, but it was down in Houston, where it's nice and warm most of the time. I went to Sammy's band competition weekend before last, and saw them perform, but didn't get to hang around as long as I wanted because I was just too darn cold!

Life is good otherwise. Sammy and I got the living room carpet steam-cleaned last weekend, which also forced us to clean up that area in general. This coming weekend we'll tackle the downstairs family room in the same way. Most of my days are filled with laundry, dishes, paying bills and trying to organize stuff around the house, but it seems I never even make a dent. Such is life, I suppose. I do get to break up the monotony of that with occasional meals out with mom or friends, and getting to see people is one of the best parts of being home.

Yeah, that's about it. I'm sure there's been more exciting stuff to happen since my last post, and I of course always have lots of emotions and thoughts running around in my head, but today I'm feeling tired and pretty ho-hum, so none of that is making it's way to the surface and out via the keyboard. There's always time for that later. For now, I'm gonna try to catch a quick nap, make some lunch, then head out for chemo. Adios.

--Steph

Posted by Stephanie 11:20pm from the house

I soooo thought it had only been a week since I posted last. It's been two. Oops. Goes to show how crazy busy I become when I'm home, whether I mean to be or not. Let's see how much I can remember about the happenings of the last two weeks....

Chemo Day 8 was a week ago Wednesday. It went fine--I got both the gemcitabine and docetaxel just like I was supposed to, and the only snafu came at the end of my infusion when I spoke to the nurse about labs. I told her my platelets were going to be a problem, and that I'd need to have bloodwork starting a few days from then. My platelets were only 140K on Day 8, and if they followed the normal pattern, they'd drop about 120 in the first 3-4 days, putting me low around the end of the weekend. She consulted my chart, and said that I was only due for bloodwork once a week, on Wednesdays. I told her they'd be dangerously low by then, and that I really needed labs by Monday at the latest. I briefly went through my platelet history, including being on Nplate last fall, but was somewhat blown off and told that I shouldn't have a drop like that with this regiment. No matter what I said, I got nowhere, so I ended up losing that battle and leaving with an appointment for labs a week later. I decided to call Romer's assistant the next day and explain myself again. They must think me such a pest, I call there so often! I was granted labs on Monday, and sure enough, when I went, my platelets were already down to 27. Why doesn't anyone think I know my body and what's going to happen?! Anyway, even with platelets that low, they don't feel the need up here for daily labs, so I had bloodwork again Wednesday (platelets were 17 that day), and then again today, and they were thankfully 26 and heading back up. Had they still been dropping, we'd have been in trouble, since they don't do weekend labs up here. I do miss having daily results that I can use to track my counts and get a complete picture of how they're trending. But, I'll deal, and I avoided a transfusion yet again, so that's what is really important. The rest of my counts look okay--hemoglobin is hanging steady, but low. My white count, which hasn't really gotten low with this chemo combo, is actually on the high side.......WAY on the high side. It always jumps super high a day or two after getting Neulasta, which is designed to prevent my white count from dropping too much. Afterwards, it usually settles in normal range, which is between 4.0-10.0. Right now, my white count is 16.3, and that's more than a week after Neulasta. In fact, it started out around 10 at the start of the week and just keeps climbing. That is very unusual, so I don't know what's going on. Hope I don't have some sort of infection somewhere that's causing it to skyrocket.

Aside from the counts issues, this chemo round was fine. I had my normal couple of cruddy-feeling days over this past weekend, but nothing out of the ordinary. The bite on my leg is still there (crazy, I know), but looking much, much better. I took a total of two weeks worth of antibiotics before it looked as though it could continue healing on it's own. Of course, with a white count like I have now, I ought to be able to heal just about anything....

So, I start another round this coming Wednesday. After that, it's back to Houston for scans and surgery. Oof. I'm not gonna think about that yet. I'd rather focus on the four weeks or so I still have at home. Speaking of home, it's been so nice to be here. I get to sleep in my own bed, hang out with the cat (who's thrilled to have company during the day, I'm sure), get together with friends (which I've tried to do often the past few weeks), etc. I do as much as my energy allows around the house--laundry, dishes, paying bills......I feel like I'm behind no matter what I do. Too bad I'm not wealthy so I could hire a maid, and a crew to shovel out/organize things, and someone to do yard work. Oh well, a girl can dream.

It's after midnight--I should get some sleep. I'm usually in bed by about 10:30, but it's the start of the weekend, and I've been trying to wait up tonight for Sammy to get home from the football game. Poor guy--out in this cold rain tonight (and this week during rehearsals), and then out again tomorrow for a competition. At least it's not supposed to rain tomorrow. The show is in Kettering--I think I might try to go and see the band play, as long as it's not too chilly. I love fall for the leaves, and the food, but sometimes I wouldn't mind being back in Houston where it's still warm! Goodnight all. I will try not to let so much time pass between entries--I actually had people e-mailing me to see if I had fallen off the face of the earth.

--Steph

Posted by Stephanie 1:35pm from the house

It's been a crazy week. Sorry for the lack of posting. Time to get caught up.

Like I said in my last post, mom and I were scrambling last Thursday to get everything ready to leave and head home Friday afternoon. We were ahead of schedule with cleaning and packing when it was time for my dressing change Thursday night. Mom took off the dressing, and somehow, one of the stitches holding the CVC line to my skin had come completely off, and one side of the line was just there flapping around. It was still attached in two places, but if we left that stitch off, it might easily get twisted or pulled accidentally, even under the dressing. So, we went ahead with the dressing change, but Friday morning I had to go to the hospital first thing and sit at the Infusion Therapy center until they could work me in to be restitched. Fun times. While I was there, I headed up to the sarcoma center as well, to have them look at a pesky bite on my leg that wasn't looking so hot. I first noticed this bite (on my right upper thigh) Tuesday morning, and it looked just like a normal bug bit--small red bump that itched. Mom and I had been out the night before, and I had worn shorts, so I figured I had been bitten by something then and just hadn't realized it. Well, as the days went on, the bump got larger, and outside of that, a huge red tender area developed. Friday morning, I had spider-y offshoots of red (like it was running through my veins), so I wanted it to get checked out before I left in case I needed to be put on an antibiotic. I was checked out by a physician's assistant at the sarcoma center, who thought it didn't look so bad. She called Dr. Benjamin to get his opinion, and he said he wanted to avoid an antibiotic unless absolutely necessary.

Those two tasks at the hospital took more than three hours. I drove myself to the hospital to take care of all that so mom could stay at the apartment and continue getting things cleaned up. We managed to get out of Houston by late afternoon, and drove seven hours or so before stopping for the night. Even leaving early the next morning to continue the trip, it was right about 10pm on Saturday night before we pulled into the driveway. Needless to say, I was glad to be out of the car and home!

I was scheduled to get bloodwork and see Dr. Romer Monday afternoon. My appointment with him went fine--I gave him the Reader's Digest version of the last year or so of treatment, asked the questions I had about their usual policy for bloodwork/transfusions and low platelets, and made sure he had a copy of the chemo orders from MD Anderson. Bloodwork was good--platelets were up to 139 (hooray!), and I was scheduled to have chemo Wednesday afternoon. I also showed him the bite on my leg, which continued to get worse over the weekend. By the time Monday rolled around, the bump was large and purple, the area around it really red, firm and tender to the touch, obviously infected, and so painful I had a noticeable limp. He prescribed an antibiotic, one specific for bacterial skin infections. I left his office feeling pretty comfortable with having things done there--a welcome change from the stress of the previous week.

Tuesday, the bite on my leg developed a huge blood-filled blister that popped in the middle of the night and oozed everywhere. Nasty, right? Thank heavens I had a bandage over it. When I really got in there the next morning to clean and sterilize the wound, the skin under where that blister had formed was dark purple with a black spot in the middle, and it still had that red inflamed area around it. I could barely put any weight on it (getting around the house was humorous), and I was worried about tissue necrosis. I had this awful vision of the wound rotting away despite the antibiotic, and started to really wonder if a bug had bit me, or if I was dealing with a nasty spider bite. Brown recluse spiders (very poisonous) are common in that part of Texas, but after doing some online research, I really didn't think that could be it. Brown recluse bites usually cause nausea, vomiting, chills and fever, and tissue necrosis usually occurs within a few days. Seeing as how I had none of those symptoms, and it had been a week since the bite with no gaping wound, I figured I was okay. On Wednesday, when I went for chemo, I showed the infusion nurse the bite, and while she agreed it was really nasty looking, she didn't think there was anything to worry about, and told me I should give the antibiotic a little more time to work. I'm glad to say that the bite area has continued to get better, though the area around it is still super tender and inflamed (cellulitis, according to the nurse). Even though on paper my immune system looks okay right now, it's still compromised no matter how you cut it, so it'll probably be a couple of weeks before it's really better. At least I can walk semi-normally now, always a bonus.

Speaking of chemo Wednesday, it was quite the experience. At Dr. Romer's, like most community oncology offices, the treatment area is just a large room with recliners side-by-side for the patients to sit in. People who have come with patients can sit in regular chairs across the room. I know that's how most people get their chemo, but for me, it's so strange--I'm used to having my own hospital room, even for outpatient chemo, with a TV in the room, and plenty of privacy to talk and do the 'happy chemo dance' when the infusion begins. Here, there was no TV, and certainly no privacy or chance to talk to the person who came with you. Everyone's just there, in their chairs, sleeping or reading. On this particular day, I was the youngest person by about 40 years (aside from one woman in her 50's), and the only was who was bald. Don't know if that's normal or not, but it certainly was a different collection of people from the other patients I'm used to seeing at MD Anderson. Anyway, as for the actual treatment, my infusion nurse for the day came over to get a little background on me. She was really surprised I had already had 24 previous rounds of chemo done somewhere else, and even when I explained that up until now my treatment had been too intense and high-dose to be done here, she couldn't really fathom why I couldn't have done it at home. She said, "Well, we do high-dose here," and yes, I know they do inpatient chemo for some of their patients, but the definition of 'high-dose' here and the definition of it at MD Anderson are two totally different things. The truth is that unless you're familiar with MD Anderson (or another specialized cancer center), it's really difficult to comprehend how aggressively they treat people. In fact, when we were discussing my time on high-dose Ifosfamide, the nurse asked what dosage I had received, and when mom pulled that information out of her purse (where it was written down in my own little treatment detail book), it turns out that I was getting nearly three times what they usually did here locally. I'm just an oddity they're not used to seeing.

So, the nurse ran my pre-meds, and when it came time to start the actual chemo, she brought over a bag of Gemcitabine AND Docetaxel. Ruh-roh. I'm only supposed to get the Gemcitabine on Day 1 of the cycle--it's Day 8 where I get both. I told her that, and even pulled out a copy of my chemo orders from Houston that I had brought along (glad I thought to do that). For some reason, those orders couldn't be found in my file (even though Dr. Romer stared at them in my file during my appointment Monday), and they were planning to give me both drugs today, and then only the Gemcitabine next week--backwards of how it should be. I don't know if that's how they usually do it here, or whether there was just a miscommunication, but it was quickly straightened out. Being able to identify and fix mistakes, no matter how small, is reason number 500 why I'm so adamant about being fully educated on my condition and treatment plan. It's not just here--it's happened at MD Anderson numerous times. When I think about how many things could have gone wrong over the years if I just always assumed it was getting done the right way and didn't double check.......well, I'd have incurred many setbacks and issues if that were the case. I know I've said it before, but to anyone who's dealing with something medical, EDUCATE YOURSELF!!! It makes all the difference.

Aside from that tiny snafu, chemo was good. Even if it is going to take some time to get used to, having things done here certainly has it's advantages. Though I haven't been much help around the house this week because of my leg, now that I'm starting to be mobile I can really get some stuff done. Today, I've had breakfast with Reba, done some laundry, and tonight while Sammy's at his football game (hopefully staying dry), I'm having dinner and seeing a show at a local community theater with a group of gals. It's the start of a great weekend, for sure. Ta ta for now!

--Steph

Posted by Stephanie 9:50pm CST from the apartment Houston, TX

Boy, has it been a roller-coaster couple of days with this insurance situation! Here's what's happened since yesterday's post:

While waiting for a callback from Mara, I called the sarcoma business center (yes, every treatment center at MD Anderson has their own business center to handle authorization and other issues) to get verification of the insurance approval for the GemTax treatment there in Houston. Turns out the phone was answered by the very person who called to do my verification. She pulled up my account information and told me she had the name, date and authorization reference number for the phone conversation she had with someone at my health insurance company. I asked what she was told when she called, and she said that the man she talked to told her there was "No pre-certification required" for that treatment. They would just send the insurance company the claims, and because they didn't consider it strange or expensive enough to need special pre-certification, things should get paid at normal network percentages. I thanked her for the information and hung up. Hmmm.....strange. Why would one place be told there was no need to pre-certify and another place be told that wasn't an approved treatment for my diagnosis. I called back to the insurance authorization person at Dr. Romer's office. I got her voicemail and left the message with that information so that she'd have something to go back at the insurance company with.

I then called my case manager at the insurance company. I've been really fortunate that from the beginning of my treatment almost four years ago, I've had a case manager that entire time. That's not common or necessary for most people, but when you're dealing with such a high-dollar catastrophic case such as mine, a case manager is almost always assigned to assure things run smoothly. My case manager is actually part of a cancer-care center at the insurance company, and is a nurse with oncology experience, which is extremely helpful. When I spoke to her and explained the situation, she too, thought that things didn't quite add up. For MD Anderson and Romer's office to be told two completely different things just didn't make sense. The bottom line is that if it was approved at MD Anderson, and it's the same treatment, then this is just a continuation of my care, and it shouldn't matter where the treatment takes place. Sounds to me like somebody somewhere along the line screwed up! Anyway, she assured me she would look into this, make some calls, and see if she could find out what was going on.

That was all I knew at the end of the day yesterday. It still wasn't looking good, and I had pretty much resigned myself to being down here to continue treatment. I didn't hear anything today until almost one o'clock, when I got a call from the case manager at the insurance company. She said she had spoken to some people, made some extra notes in my file, and that I was now approved, covered and pre-certified for treatment in Ohio. Yippee!! She's magic, or a miracle worker, or something like that. She said all that Romer's office needed to do was call back to the benefits department for verification, and if they were told anything other than what she just said, I was to call her back. I immediately called Romer's office and told the insurance authorization person this news. She said she too had gotten a message from my case manager, but that the insurance company was still telling her this wouldn't be covered, so until she got some sort of official written verification, she considered it a no-go. Ugh. I was promised a call once things were squared away. So, I waited. Mara finally returned my call from yesterday, and we got chemo set up in Houston for Monday, just in case. And, I waited some more. I couldn't let the apartment people know we were planning to leave this weekend, because things still weren't certain. Still waited. Finally, just before the end of the business day, I heard back from the insurance authorization contact at Dr. Romer's office. The first words out of her mouth when I answered the phone were, "Holy Cow!". Huh? She said she'd heard back from my case manager and sure enough, things had gotten worked out (didn't I already tell her that?), and she was being faxed verification. Then, she said it again. "Holy Cow!". It was obvious she was impressed things had gotten worked out so quickly (or at all). I don't think she expected turn-around like that, since most of her dealings with insurance companies are probably long, drawn out, painful processes that aren't expedited by the presence of a competent case manager. I can't believe she was that blown away, but it sure gave me a good chuckle. She also added that she's still being told it won't be covered when she calls to verify benefits, but since we have the assurance of my case manager, she said that's what we'll go with. Works for me.

Two days of things hanging in the air, then suddenly everything's happening in a blur--trying to get the apartment thoroughly cleaned, organizing medical supplies, packing, notifying the church that we're vacating the apartment permanently (this church group collects payment in-person weekly, which we wouldn't be here for, and if you don't have regular hospital apartments, they make you give the place up--that's different than churches we've dealt with in the past, who don't care if you're gone a few weeks as long as you're still paying), etc. Yesterday we were going to be stuck here for the forseeable future, and now we're leaving tomorrow afternoon. At least, that's the plan, as long as everything gets done. That way, we can do the short leg of the drive tomorrow, then the long day on Saturday. My sister is going to be in Ohio from North Carolina to see some friends of hers, so we wanted to get home in time to visit with her for at least a short time before she left to drive back Sunday.

I'm totally drained after the stress of the last few days. Still feeling some apprehension about getting this done at home, away from the security blanket that MD Anderson has become. More on that later. But, it should be okay, and I'm certainly excited to be home long-term. Right now, it's shower and dressing change time, then more cleaning and sleepy time. Have a good night!

--Steph

Posted by Stephanie 10:55am CST from the apartment Houston, TX

I should've known yesterday, when it seemed like everything was working out perfectly, that it wouldn't take long before something would come crashing in and ruin the party. That kinda seems to be the story of my life a lot of the time. Maybe I'm just realllly unlucky, who knows.

What am I going on about? Well, I got a call bright and early this morning from Sammy, who'd gotten a call at home from Dr. Romer's office wanting to know if I could come in today to see him. Sammy informed them that I was still in Texas, and then called me to give me the name and number of someone there I needed to call to get things squared away. I did that immediately, explained to yet another person why I was still down here and what I needed, and after conferring with Dr. Romer, the scheduler set up an appointment for me to see him Monday afternoon, with chemo scheduled for the first available slot, which was Wednesday afternoon. Great! I was told they'd notify their insurance authorization person so that she could get the ball rolling for next week.

Feeling really good about things falling into place, mom and I headed over to the hospital for bloodwork, and on the way back to the apartment, my phone rang. It was the insurance authorization contact at Romer's office, and I knew right away from her tone of voice that something bad was happening. She informed me that she had been on the phone with our insurance company for two hours, and that she was hitting a brick wall when it came to getting things approved. The insurance company is telling them that they will not approve treatment done at Dr. Romer's office because the GemTax combination is not on a list of approved/acknowledged treatments for osteosarcoma. Never mind that it's working, or that all the stuff on their little "approved" list either doesn't work for me or is something my body can't tolerate. That doesn't matter. Anyway, she went on to say that she had gotten nowhere with them, and neither had Dr. Romer when he got on the phone. He requested to speak to the medical director for the insurance company but was told that was impossible. Instead, his office has to submit all the necessary paperwork (and he's dictated a letter to send, as well) so it can go through their approval process, and once it's officially denied, THEN maybe he can talk to the medical director, which will still probably get them nowhere. See why I'm frustrated? How ridiculous. I asked her when she thought they might hear something back. She said that she told the insurance company this matter needed to be expedited, to avoid postponing my treatment, but that got her nowhere. They have a certain period of time to look over the proposed authorization and make a decision. It could be days, it could be weeks. She advised that if it were possible for me to continue with my next course of treatment down here, I should plan to do that, and once she has more information, she'll get back to me.

I'm frustrated beyond belief. This chemo combo is commonly used for so many things. It's outpatient, so it's not the insanely expensive in-patient chemo I've received in the past. But, because it's not on a silly list, I can't have it done. I asked the insurance authorization woman (bless her heart, she was just as frustrated as me) why this would've been approved here at MD Anderson (it had to be, in order for me to even start getting it weeks ago) and not at their office. She didn't know. If I had to guess, I'd venture to say that MD Anderson has a little more clout in getting things okayed for off-label usage, but if the insurance company has said it's okay for me to have it there, why should it matter if I have the already approved treatment somewhere else??

Obviously this puts a giant halt to our plans to come home. I've got a message in at the sarcoma center for Mara to call me, so I can explain all of this and have them put chemo on my schedule here for Monday. After I speak to her, I've got to call the insurance authorization department at MD Anderson and make sure that yes, they did indeed get approval for this treatment. If it turns out they didn't, and I've got $80,000 of chemo to pay for, so help whoever dropped the ball......anyway, then I've got to call my case manager at the insurance company and see if she can be of any help in all this. My brain hurts....and I'm sad. I thought things were finally really going in our favor, but I feel like I also should've know that was too good to be true. Every time we've tried to do any part of my treatment at home, we've hit problems--they couldn't get Nplate, or they'd only agree to give that dosage of MTX as an inpatient, or I just really needed to be here to be monitored because of the severity of the treatment. Maybe I'm meant to have everything done here for some greater reason unbeknownst to any of us actually going through it at the moment.

There, I'm done venting for the moment. As this continues to unfold, I'll keep the updates coming. Mom and I may go ahead and plan to come home next week between the Day 1 and Day 8 infusions like we've been doing the last couple of cycles, especially in light of this news. We'll see.

--Steph

Posted by Stephanie 9:20pm CST from the apartment Houston, TX

IT'S WORKING! Just thought I'd get that out there in the open right away. Here's the scoop on the appointment with Dr. Benjamin.

Dr. B came into the room (only an hour and fifteen minutes after my appointment time, not bad) and told me that the CT report stated that the lung spot had grown in size. Wait, what?! BUT, he quickly told me that the radiologist had for some reason compared today's scan with the one in June that first showed this lung nodule. When compared to that, yes, it was bigger now, but if you look at the scan from early August, then the lung nodule today was smaller. Whew. *wipes forehead* Don't know why they chose to not compare the two most recent scans--guess they just wanted to give me a major panic attack. Once I realized Dr. Benjamin was telling me that the chemo was working, and that the tumor was smaller, I breathed a big sigh of relief at the same moment he threw his arms around me for one of his big, Dr. B bear hugs. Once we were done with our mini-celebration, he pulled up the June, August and today scans so he could show me what he was talking about. We know it got significantly bigger between June and August--that's how we figured out the methotrexate wasn't working. I was, even with no medical training, able to see on the scans that today's showed a smaller lung nodule. It's barely smaller, I'll be honest. Definitely not the massive response I've had to chemo in the past, but it's smaller, and that's progress. Dr. Benny took the time to scroll through each cut of the image and show me how it was not quite as wide, or tall as it was last month, so it looks as though it's shrinking in all dimensions. It does not yet appear to have any level of necrosis (tissue death), which could be because it's so small to begin with, and/or because it's only partway through the second cycle. All those changes, no matter how tiny, serve as proof that the treatment is working. Still looks as though the spot in my rib remains unchanged.

So, what next? Unbelievably, Dr. Benjamin told me he had already spoken to Dr. Romer in recent days about getting my treatment done at home. It looks as though all the specifics about treatment (adjusted infusion times and dosages, etc.) will be no problem, but Dr. B didn't tell him it was for sure a go because he wanted to see today's scan first. The plan is for me to go home and do two more rounds there, return to Houston for another CT scan, and then, Dr. Benjamin expects it will be surgery time. He said he doesn't want the tumor to get too much smaller, or else they won't be able to easily locate it and remove it. When I return for that checkup at the beginning of November, I'll also have a consult with my cardio-thoracic surgeon, Dr. Swisher. Not sure yet on the details of surgery--where they'll make the incision, whether they'll need to take just a wedge of lung, or a lobe, what they'll do with the section of diseased rib. Surgery will probably be sometime in November, then there will certainly be post-op chemo, probably extensive.

Oh, I should talk about my platelets and their role in all of this, before I go on. Today, they were 20. Boo. They dropped even more today than yesterday. I thought I was going to avoid a transfusion, but we're getting mighty close. We'll see. Anyway, Dr. Benjamin thinks that if their unwillingness to cooperate doesn't postpone my next round of chemo, it certainly may put off future rounds by a few days. A lot of this time line I'm talking about is dependent on my ability to get treatment on time. They could decide to give me more time between chemo and surgery to give my immune system the chance to recover, it all depends.

I left the sarcoma center with Dr. Benjamin's assurance this will be okay at home, and that he would call to finalize things with Dr. Romer. I clutched in my hand copies of my chemo orders, written CT scan reports and most recent bloodwork--the only things I had that would let them know back home what to do. I called Romer's office right away to explain the situation and say I needed an appointment with him this coming Monday. That's when I'm due for chemo, but I need to catch him up fully and be examined first, since I haven't seen him in an appointment setting for more than a year. It'd probably mean I wouldn't get chemo until Tuesday or Wednesday, which isn't a big deal, but I can't have things significantly postponed. I was informed by the receptionist that Dr. Romer did not have an available appointment until September 28--a full week after I need to see him. When I told her that wasn't going to work, she put me on with his medical assistant. I explained the situation again, said that the two oncologists had talked, so this shouldn't be a surprise to Romer, and all she said was, "Well, he's not here today. I'll take your number, ask him tomorrow what he wants to do, and get back to you." Grrr.....hitting snafus already. I've gotta think he'll try to work me in so that I can get this started, but what if he doesn't? Then it doesn't matter, I've got no choice but to stay down here for treatment. I told mom and Sammy both--I'll give doing this at home a chance, because it would save us tons of money, let mom be close to grandpa and be able to work, and allow me to be home to help Sammy, but if it turns out to be nothing but a string of problems getting this done, then I will not hesitate to call down here and tell them I'm coming back.

I was hoping to get stuff scheduled with Romer, and talk to their insurance approval person so they could begin that process this week, but no sense in doing that until I know for sure I can be worked in. There's also no way we can let the apartment church group know when we'll be moving out, or make travel plans home until I know what's up with this or how my platelets are going to be (I've been told they have to be going up, and above 25 before I can leave Houston). It just seems like no matter how often I try to plan or get things in order for anything--treatment, travel, etc., I can't, because my entire life exists up-in-the-air. Once again, things will all have to be done last minute. SO FRUSTRATING!!! I shouldn't complain too much, since the news we got today was good, and since in all likelihood, I'll be able to come home soon. Yippee for home.

So yeah, that's where things sit at the moment. Mom and I are going to start cleaning the apartment tomorrow and packing up what we can. Plus there'll be a trip to the hospital for bloodwork, and running some errands. It'll be a busy few days. I'll keep everyone posted as I learn things. I've already gotten lots of congratulations and encouragement from those who learned earlier today of the good news. Thanks--we really appreciate it! Night all.

--Steph

Posted by Stephanie 9:20pm CST from the apartment Houston, TX

Well, I am once again through the nasty part of cycle 2, and I'm quite happy about that. My visit home did a lot to boost me in preparation for the second half of this cycle. While I was home, I got to have breakfast/lunch out with several friends, relax all weekend with the Samster, and help get some stuff done around the house. I hate that I'm not there to give Sammy a hand 99% of the time right now. During marching season, being a band director becomes waaay more than a full-time job (especially since Sammy has no assistant director), and trying to tackle that, community band, church activities, essential house things like cooking, cleaning, laundry, etc., building in a little down-time to avoid insanity, oh, and be emotionally drained by the fact that your wife is having cancer treatment 1100 miles away......well, as you can imagine, it's a lot to take on. I think he's a super-hero for managing it all. I look forward to a time when I can be there all the time to help keep things rolling.

So anyway, mom and I came back to Houston and I had chemo on Labor Day, then the followup Neulasta shot the next evening. I started feeling the achiness from the Neulasta and the effects from the chemo late Wednesday into Thursday, but it was bearable. Friday was much rougher. This time around, I definitely felt more of the ‘profound fatigue’ that my medical team said I’d have. Just stretching out in the recliner and flexing my foot caused a horrid, burning, deep ache to spread through my whole body. I felt like I’d run five marathons back to back. Thankfully, start to finish, the feeling bad only lasted three or four days, and by Saturday afternoon, I felt well enough to venture out of the apartment. That was the first time all week I’d been out of the apartment, aside from going to the hospital for chemo or bloodwork. I was starting to go stir crazy. Mom and I tried to go browsing in some stores near the apartment, but I still really couldn’t be on my feet for more than a half hour, so we settled for that and a fabulous Greek dinner out.

My immune system is behaving itself thus far, though platelets are low, as expected. My platelets actually went up between Day 1 and Day 8, which was very unexpected. In the first cycle, they dropped by 20 or so during that first week, but this time, they went from the 130s up into the 170s. That means I have a little extra wiggle room, which will hopefully prevent a transfusion. Once I had the infusion on Day 8, they started dropping quickly—down 70 in the first two days, 50 over the next two, and today they were all the way down to 34. Needless to say, mom won’t let me help by chopping anything for lunch or dinner.

Normally, I’d have nothing done this coming third week of the cycle, and then I’d be due at the end of it for a CT scan and a visit with Dr. Benjamin to determine if things are indeed working. However, we’re actually doing the scanning and doctor’s appointment early during this third week, so that if things are looking good, we can maybe set things in motion for some of my treatment to be done at home. I have bloodwork and a chest x-ray tomorrow, then a chest and abdominal CT early Tuesday morning, with the Dr. B appointment later that same day. A more optimal time for the CT scan would certainly be at the end of the cycle, to give the chemo another week to do it’s thing, but Dr. Benjamin assured me this would still give us the answers we seek.

On a totally random sidenote, today was the first sunny day we've had in a week. I was almost blinded by it when I walked outside. It’s done nothing but rain all week—a welcome sight to this drought-stricken area of Texas. I hear it’s been lovely weather back home. I really love fall—the changing leaves, cooler evenings, comfort food, etc. Not too much “fall” down here in Houston. I’ll miss that if I’m still down here.

Lots of important answers and decisions coming in the next couple of days. I will be back on here more often to keep the updates coming. Nighty night all.

--Steph