Posted by Stephanie 4:00pm CST from the apartment Houston, TX

Gemcitabine infusion Day 1--check. I started the new chemo regiment today (a day earlier than expected, since evidently there weren't any times available Monday), and we were amazingly in and out of the hospital in about 2 1/2 hours. I was given two pre-meds before the chemo--Zofran (anti-nausea medication) and Dexamethesone (steroids). When the nurse brought in the Gemcitabine, I was shocked at how tiny the bag was. I'm used to huge bags of strangely colored chemo, but this was clear and very litle. The chemo infused over 70 minutes (instead of four hours, like MTX), and after being flushed with saline, I was disconnected and we drove our happy little selves back to the apartment.

So far, *knock on wood* I feel totally fine. With methotrexate, I always started to feel puny as soon as the infusion started, but that was not the case with this, and for that, I'm thankful. We'll see how I feel as the day progresses. I'll be due for the second infusion a week from today, but since we had already gotten our flight when I learned about the Sunday start date, we have to push the second infusion a day later to next Monday because our return flight to Houston doesn't get in until Sunday evening. Dr. Benjamin said the one day difference was no big deal.

There hasn't been much else going on here. Mom and I continue to find new ways to amuse ourselves, since our tv channel selection is truly pitiful, and it's too hot to do anything outside. Puzzles, naps, video games......not exactly sure what we're going to do next week when I'm too fatigued to do anything or go anywhere. I'm guessing we'll be watching a lot of movies or reading a lot of books. I did get to go out to dinner (for Greek, yummy!) with Joe and Sarah last night. After that, we had Hank's ice cream. They had heard me mention it a couple of times, but had never been, so I was more than happy to introduce them to the joys of banana pudding ice cream (or chocolate, in Joe's case).

I'm off to go relax. Looking forward to flying home on Tuesday. Evidently it's pretty warm in Southwest Ohio today (91), though I have no empathy for those complaining about the temperature. Come to Houston--then you'll know real heat! Ciao for now.

--Steph

Posted by Stephanie 10:15am CST from the apartment Houston, TX

Today is a new day, and I thankfully awoke feeling more upbeat than yesterday. Time for the lengthy scoop on the change in my treatment plan.

I had my CT scan eaaaarly yesterday morning, and was scheduled to see Dr. Benjamin at 2pm. Of course, if you've followed this blog, you know that he tends to operate in his own time zone (known as B.S.T.--Benjamin Standard Time), so it was actually about 3:30 or so before he peeked his head into the door of my room. As soon as he did, I knew it was bad news--he's fairly easy to read, and the look on his face was not one of relief. He sat down, brought up my scans on the computer and explained that the nodule in my lung has grown from 1.2 cm on the PET scan a month ago to 1.7 cm on the new scan. Not doubled in size (thank goodness), but that amount of growth is what he would expect to see if the chemo wasn't working. I immediately asked if this meant all the methotrexate I had in the spring was for nothing. He said that could certainly be the case *sigh* or it could have worked then, but whatever I have in my chest now may be resistant to it. No way to know for sure. I was able to see the comparison between the two scans, and also take a look at the rib spot, which has not changed at all. If there's good news to be found, it's that there still is only one single lung nodule (these things usually recur in clusters).

I asked Dr. Benjamin what his next plan was--he had spoken to Sammy and I back in July about a couple of other chemo combinations/clinical trials. He said that at this point, my body could probably tolerate Ifosfamide--the chemo agent that has proven so effective for me in the past--but that I still might not be able to take more than a couple of rounds, which wouldn't be enough to do the job. He said that since there are some other options, he'd rather save that, and keep giving my kidneys time to rest in case we do eventually have to go back to it. Right now he'd like to try a combination of two chemos--Gemcitabine and Docetaxel. The shorthand name for the combo is Gemtax. Individually, the primary indicated use for each of them is to treat carcinomas (breast and pancreatic cancers, for example), but has been used in combination to treat soft tissue sarcomas. Dr. B said that the Gemtax combo is not usually as effective as methotrexate, but that he has used it successfully for osteosarcoma patients, and that when it works, it works really well. I'm hoping that since the chemos typically used for osteos (Adriamycin, Cisplatin and Methotrexate) haven't worked for me, that maybe I'll have luck with this. At this point, we're getting to the bottom of the list, which of course has me really freaking out, and this neeeeeds to work!

Anyway, here's how a cycle of Gemtax works. It's outpatient, which is great. Day 1, I will get an infusion of Gemcitabine, and that's all that happens for the first week--no daily labs (no labs at all that week), and no special medication. It's side effects are mild, and thankfully doesn't usually include nausea or vomiting. One week later, on Day 8, I'll get another infusion of Gemcitabine, and an infusion of Docetaxel. Then the third week of the cycle is the recovery week (bloodwork twice a week for the 2nd and 3rd weeks of the cycle). Docetaxel is the nastier of the two chemo agents, and for the second week of the cycle, I've been told to expect extreme, EXTREME fatigue--can't get out of bed or even lift your arm kind of fatigue. Oh goody. That's the main side effect, although Docetaxel is also known to cause severe adema (fluid retention/swelling), like what I dealt with last spring. Because of that, people on this regiment take three days worth of steroids on Day 7, 8, and 9 of the cycle (the day before, day of, and day after the Docetaxel infusion). It's double the dosage that I was taking in the spring (oof), but Dr. Benny thinks that since I'll only be taking them for 3 of the 21 days each cycle, I shouldn't have as much of a problem with them. Other minor side effects from this chemo combo include a chance for mouth sores, and oh yeah, I'll lose my hair again. Guess I should go ahead and cancel the haircut I have scheduled for next week. My immune system and counts shouldn't suffer much for the first couple of rounds, but eventually Dr. B thought they could start to drop, especially my platelets. We'll do two rounds (six weeks total) then rescan and see if it's working.

I also took some time to question Dr. Benjamin about any complementary or alternative treatments that might be effective. My father has always been a big believer in natural remedies, vitamins, etc., and has been researching things to help me ever since I was first diagnosed. He's also not a fan of western medicine, more specifically the hospital/pharmaceutical industry in this country. I don't believe I've ever blogged about his strong opposition to my current course of treatment before--it's a touchy and painful topic for me. He of course loves me, and wants me to be well, he just wishes I'd go about it another way. He's given me several books and articles about alternate treatment theories (most of which occur outside this country), but in all that reading, there's never been one mention of those treatments used successfully for osteosarcomas. I asked Dr. Benjamin about several of them specifically. Dr. B said that he was aware of all of those, and that they in fact have done clinical trials using many of them there at MD Anderson. One of them, hyperthermia (heating the cells of the body high enough to kill the cancer) has shown some success for soft-tissue sarcoma, but no luck for the bone versions. Unfortunately, conventional chemo and surgery continue to be the only proven options for my type of cancer. He assured me that if there were something else that could help, he'd work to make it happen. I will still continue to take vitamins and supplements, as I have all through my treatment, to help my body cope with the treatment and keep me as healthy as possible during this. I truly believe I tolerate things so well because of the attention we've paid to my nutrition, exercise and immune system.

I told Dr. Benjamin I had hoped to be home next week, since my 30th birthday is Friday, 8/14--Ang was going to come up from NC for the big event, and I wanted to be able to celebrate with Sammy and my entire family. Since the infusions for this regiment are spread out, I wasn't sure how getting home might work. Dr. B said that I would need to stay in Houston during that nasty second week, so that they could monitor me, but if I wanted to go home between the Day 1 and Day 8 infusions, I could. Since we're changing regiments, they have to get insurance approval, so it's looking like it will be early next week before we can even get started. Right now, our plans are to get the Gem infusion on Monday, fly home Tuesday, and then return to Houston on Sunday, 8/16 in preparation for the Day 8 infusion on 8/17. Driving would be cheaper, but then we'd be in the car for two days home and two days back, with only two days at home, and that makes no sense. I'll be able to be home for my birthday, and then return for weeks two and three of the cycle. I could again come home the 3rd week of the cycle, but that much travel just gets too expensive. The Gemtax combo is not considered extremely high dose, and is used far more commonly outside of MD Anderson, so there's a good chance that after we learn if this is working, I might be able to get this regiment at home with Dr. Romer. How nice that would be.

There ya go, that's the lowdown on the new treatment plan. I'm always nervous about starting a new regiment, especially when it contains side effects that I haven't dealt with before (like this awful fatigue!). It's just hard to know what to expect. Emotionally, I'm of course really upset to learn that the MTX didn't work. I don't like thinking that I may have gone through six cycles of that last spring for nothing, and I certainly don't want to think that this new combo might not work either. I can't help but to have those thoughts, though. For the first time since all of this started four years ago, I'm starting to be really afraid about my future. Don't worry--I certainly haven't given up, and I'm still gearing up to fight this with everything I have. The right frame of mind is crucial! More than sad, or scared, Sammy and I are angry. We're tired of how much this disease has taken from us. I hate that we have to be apart when we hear news like this. That's the time where I need to lean on him, and vice versa, and here we are 1100 miles apart. I won't lie, it sucks hardcore. I know he feels what he's doing with the Livestrong Foundation is even more important now than ever before. His 100 mile ride in Philadelphia is coming up. I was hoping to be able to fly out there for that weekend with him, but now that falls at the end of my super-fatigued week, so it doesn't look like that'll happen. I'm glad there will be future rides of his that I can go see!

I've probably forgotten something from yesterday, but I think that pretty much covers it all. Sammy and I appreciate the multitudes of prayers and show of support that we continue to get. I know that we will find the strength to continue through this, and that I will one day be able to look back on this as a chapter of my life that was difficult yet life-changing in positive ways too.

Mom and I are off to pick up some stuff we need around the apartment, and grab some lunch. Hopefully we don't melt in the 100 degree heat (105-110 with the heat index). Adios for now!

--Steph

Posted by Stephanie 10:05pm CST from the apartment Houston, TX

This will be a very short post. Why? I'm tired. Tired, and depressed, and just want to pretend today didn't happen, but I promised to post about my doctor's appointment. I learned today that the spot in my lung is still growing, the methotrexate is NOT working, and that I have to be switched to yet another chemo regiment. At this point we are getting to options that aren't known to be that effective--it's kinda like we're getting down to the kid that nobody wants to pick for kickball. It's a little complex to explain, and since there are so many details, I'm gonna wait until tomorrow to post all about it so that I'm not up typing until 2am.

Right now, I'm going to go lay down, probably cry a bunch, and then hopefully fall into some sort of dreamless coma. I know I sound pretty negative at the moment, and don't worry, come tomorrow I'll once again be my gung-ho positive self, but hey, everyone has the right to be bummed for awhile, especially when you've been hit with this over and over again. A girl can only take so much.

Night all.

--Steph

Posted by Stephanie 8:30pm CST from a hotel in Arkadelphia, AR

Mom and I have stopped for the night in Arkadelphia….anyone besides me think that’s a strange name for a city? Arkadelphia……oh, and we’re only an hour from Texarcana—another strange hybrid name. Anyway, we’re 11 hours into our return trip to Houston, with another 6-7 hours to drive tomorrow.

I really enjoyed my time at home. Even though we’re just in the beginning stages of this fourth cancer battle, it’s coming so closely on the heels of the last 10 month treatment cycle that it feels like I never really had a break. Each visit home helps revive me physically, mentally and emotionally so that I’m ready to tackle this all again. Sammy had band camp all this week, and was gone for about 15 hours everyday. I’m sad we didn’t have more time together, but the time we had (like an awesome Japanese dinner out on Saturday night) was wonderful. I did get a chance to go out to East Clinton and watch a little bit of his band camp rehearsal Friday morning. I didn’t even notice that I was throwing in my two cents until Aaron, the percussion instructor, looked at me and teasingly said, “It’s not possible for you to come and just watch, is it? You’re here five minutes and already in instructor mode.” He’s so right. I guess that’s what happens when you only get a few rare minutes of time in front of a group anymore. Boo.

On the medical side of things, I’ve been feeling really good the last few days. I’m dying to get some physical activity so that I don’t totally lose the strength and muscle I was building up over the two months I was in remission. But, finding something that A) won’t put me in cardiac arrest (my heart’s so sensitive on chemo) and B) won’t cause me to sweat too much (that’s problematic for the CVC dressing) is, well, rather tricky. I’m looking forward to taking some walks around the apartment complex (though the insane temperatures may make that tougher than it ought to be). Mom and I are looking into getting me a membership to Curves—she has one already, so the next time we’re home, I’m gonna go with her one night and try out the equipment myself. We’re slightly concerned about my ability to use some of the machines because of my uniquely rearranged chest muscles, but it’d be great if that worked out—I don’t want being on treatment to stand in the way of my getting back into shape.

Alright, time for bed. Gotta be to Houston by mid-afternoon tomorrow for bloodwork and a chest x-ray. Tuesday morning is a chest CT and an appointment with Dr. Benjamin. I’m praying I’ll hear the words, “The methotrexate is working”. I’ll be back with a post about that appointment. Till then, everyone continue enjoying the summer weather and take care!

--Steph

Posted by Stephanie 11:30am from the house

Hooray for being home! I get to spend the whole week in Ohio, and I’m thrilled. Between Vegas, the checkup in Houston, the return for Houston to start treatment, and then vacation in Myrtle Beach, I’ve spent a grand total of about three days at home in the last five weeks or so, and I’m looking forward to a chance to relax.

I’m now well into round two, and there’s been lots of things going on (again my apologies for failing to get on here more often). Let me start by backing up to the end of vacation. The plan had been to drive back to Ohio, drop Sammy off so that he could get ready for band camp, and then mom and I would head back to Houston together for the second round. A couple of days before leaving Myrtle Beach, however, we ran into a bit of a snafu with that plan. I’m not sure how much I’ve talked about my grandpa (my mom’s dad) on here, but he’s 92, and while he’s still living on his own, he does need someone to stop by everyday and help him with various things. Mom’s his primary caretaker, and in the past he’s been well enough that she’s been able to leave for extended periods of time and be with me in Houston. He recently had a minor medical procedure done, and while he and mom both thought he’d be fine by the time she needed to leave with me, he continued to have some issues, and mom ended up needing to stay home with him. A little last minute scrambling with plane tickets and rental car reservations, and a good bit of stressing ensued, but we got it worked out for my sister to fly to Houston and be with me during the second round.

Ang and I both arrived in Houston last Monday. I had an appointment that day to “interview” for my CVC line placement (like I don’t know what to expect by now!), and then we checked into the hotel. (I put our name on the list for an apartment while in Myrtle Beach, but hadn’t heard anything yet). Tuesday we saw Dr. Benjamin to review how the first round went, and to discuss results from the PET scan I’d had two weeks before. Mara had actually called me about that scan before we headed to Myrtle beach, but the information she gave me was kinda vague and cryptic, and I wanted to discuss the results with Dr. B. directly. Aside from the lung nodule we knew about, the scan also picked up an area of activity in my 7th posterior rib (back side), marked by a recent fracture. Mara’s question when she called me with results had been, “Did you have any trauma to your left back side recently?”. When I said no, she explained that a fracture could be seen on one of my ribs, but that it wasn’t necessarily cancer related, and Dr. Benjamin just wanted to keep an eye on it in future scans. Now, why a fracture would appear as a hot spot on a PET scan if it was just a fracture, I don’t know. It was worrisome, but I chose not to fret about it while on vacation. When I asked him to elaborate during the appointment, he said that after studying that spot on the PET scan (and previous CT scans) a little closer, he was convinced that unfortunately, it was another metastase. Upon his closer inspection, it appears that there’s an area of destruction inside of that rib that weakened the rib enough to cause a fracture. I told him I couldn't remember doing anything that would cause a break (nor did I feel it), but he said with a weakened bone like that, something as simple as coughing or sneezing could fracture the bone. It apparently happened recently, sometime between my last CT a month ago and that PET scan. In fact, had it not been for the fracture, and it’s odd appearance on the PET scan, they might not have even caught this area until much later. He said when he looked back at previous CTs, this spot first becomes noticeable on a scan from December of last year. My immediate question was (as I’m sure yours is), “Well, if you could see it all the way back then, why has no one said anything about it before?”. His explanation was that, now, knowing what to look for, they could go back and find evidence of it, but at the time those earlier scans were taken, it was so subtle that no one, not the radiologist, nurses, or Dr. Benjamin, picked up on anything out of the ordinary. He went on to say that the presence of disease in the ribs does not at all change the treatment plan right now, nor does it lower my chance for eventual remission, although that section of my rib (or the whole rib, don’t know yet) will have to be removed during surgery. I also learned that it’s uncommon for osteosarcoma to recur in that spot, since it’s usually just a lung-loving monster, but hey, this is me we’re talking about—queen of not following the typical course—so it’s not such a surprise. Still, it’s scary to know that I now have recurring disease in two places at once, and that one of those places first showed up while on chemotherapy! Ang asked if the fact that it showed up while on chemo meant that the methotrexate wasn’t working, and he said that while he could understand jumping to that conclusion, it wasn’t necessarily true. This spot in my rib hasn’t gotten any larger, or changed at all in the eight months it’s been around (except for the eventual fracture), so there’s a case to be made that the MTX is holding it at bay. Then again, the fact that it showed up during treatment points to it not being effective. Dr. Benny said it’s hard to tell, but that the CT scan I have scheduled after this second round will tell us more. If the lung nodule is responding to the chemo (not growing, shrinking or showing less activity) then it’s proof the MTX is indeed effective. If it’s still growing, we’ve got to find something else that will work. I’m praying that it’s working—we don’t need any more treatment shake-ups.

So, chemo was last Wednesday morning, and the next few days brought about the usual nausea (no vomiting, yay!) and sore throat, but still no sign of abdominal pain—knock on wood. Ang and I had a lot of fun—this was the first time we’d spent together (aside from a two hour breakfast a couple months ago during one of her short trips home) since Christmas. We went to Galveston (her first time) Tuesday night for dinner at the Rainforest Cafe and a short walk on the beach, and ate out around the medical center several other times during our week there (gotta get in the favorites!). The other big thing to happen last week while we were in Houston was a call about an apartment! It’s in the same complex as we’ve stayed everytime, though this is a different apartment and church group than the two we’ve worked with before. This apartment has a balcony that overlooks a grassy courtyard behind the building, and DSL high speed internet (HOORAY!!), which is great. On the other hand, it only has about a dozen TV channels (three or four of which are in Spanish), though miraculously, one of them is Food Network, so it’s all good. There is also a small roach problem in the kitchen, which we didn't know about until after moving in. Fun times. Must have been going on awhile, as there were a couple of cans of roach spray under the sink. They’re baby roaches for the most part that scatter when you turn on the light, but still, I don’t like it. We’ve put down traps, and I’m hoping those work to knock out the problem while I’m home this week. Texas has such a huge problem with bugs—I’m surprised we haven’t dealt with it much before now. Anyway, I’m just thankful to have a place to stay in an apartment complex I know is safe, and close by, even if I do have to deal with a couple of minor issues.

Ang flew back to North Carolina on Friday, and I flew home Saturday. I was sitting in the airport at my gate, when across the way I spot my college conducting professor, Mr. Speck, and his wife. I stood up, shocked to see them (although Speck grew up around Houston, it shouldn’t be surprising that he was visiting) and stared until he saw me (the look on his face was priceless!). Turns out they were not only on my flight to Atlanta, but also the second leg to Dayton, so we had lots of time to chat and catch up. So crazy that they were there at exactly the same time I was, but a great surprise.

Okay, so, that catches everyone up on the major events of the last couple of weeks. I haven’t done much since arriving back in Ohio, partly because I’ve just felt generally crummy, but also because there’s not a ton to do (except around the house, of course). Sammy has band camp this week, and is gone from about 6:30am till 9pm, so I don’t get much time with him, but I’ll take any time I can get. I’m hoping to get some light exercise in (if it’ll quit raining today), and maybe meet up with a couple of people this week if it works with their schedules. Reba and I did have our three hour marathon breakfast Monday morning, and we’ve got another one planned for Saturday. We have to make up for the last few weeks! I wish I had more to do during my visit—the more down time I have, the more time there is to think, and sometimes that can be dangerous. I think I’m managing to hold up mentally and emotionally so far, though it’s tougher this time since I didn’t have any real break between bouts of treatment to mentally recover. When I had six months or a year between recurrences, I could go through the post-treatment adjustment phase, get back to “normal”, and then when I had to deal with things again, I was ready to go back to that mindset. This time, though, I didn’t even have time to get through the re-adjustment phase before I’m plunged back into dealing with all this—being away from my husband, family and friends, having to accept that I’m going to feel unwell again for an extended period of time, instead of working to get back to feeling healthy (I can’t remember the last time I felt good, how sad), and wrapping my mind around the fact that I’m now fighting this battle in two places, not just one. It’s a wonder I haven’t totally lost my marbles. Guess that when you really need inner strength, that’s when you find out you have enough to keep you going.

On a happier final note, I do have information about an upcoming even that will benefit
Sammy and I. There is a bit of a backstory—Ang and I had a babysitter when we were younger named Rosemary Richardson. Rosemary’s two girls, Niki and Becky, danced on the clogging team with Ang and I, and Niki and I were great friends through high school. Rosemary sadly died in 2008 from a brain tumor, and her family has started putting on a yearly walk in her honor. The donations from that event go to worthy causes, and this year Rosemary's family has graciously offered to give the walk proceeds to Sammy and I. The walk is happening on August 15th, at the community park in Trenton, OH, and I’m hoping we can get lots of people there to support Rosemary’s family and make the event a success. There’s going to be a cookout after the walk, plus a cornhole tournament and a raffle. Here’s a link to the myspace page they’ve made with all the details:

Rosemary's Walk of Love

That’s all for now—I’m gonna go scrounge around for some lunch. Take care, and please, drop Sammy or I a line if you want—we love hearing from everyone and being able to keep in touch. sammyminge@hotmail.com or stephanieminge@hotmail.com

--Steph

Posted by Sammy

11pm

From Home

We made it back.... over 3,000 miles, 15 days, 11 states, 8 tanks of gas, 2 hotel rooms, and a flat tire in Houston. And the most important part: steph got to go to the beach before more chemo....without a stupid cvc line in....yaaaaay. I'll do some tales from the road this week about our travels but it was a good trip overall. We did learn a few things that ill cover in the coming posts:

-Staying with friends makes houston better

-possums like cat food

-Alabama will always have more people who want hotel rooms than hotel rooms to actually put them in

-Large Marge from Pee Wee's Big Adventure is REAL

-our camera haz nite visioin....zomg!!!

-the occasional waitress will mistake an infant for an adult

But those things are for later. Right now im off to bed...steph is already sleeping...she heads out for houston tomorrow...I have loads of marching band prep to do along with training for the Livestrong Challenge...almost down to a month to go!!!

A link to donate is HERE 

Theres still time to help me reach my goal and push back in the fight against cancer!

Till Later,

Sammy

Posted by Stephanie  (title lovingly created by Sammy) 10:45am  from a random Starbucks in Myrtle Beach, SC

I swear we haven’t dropped off the face of the planet, we just haven’t had internet access for several days now, since arriving in Myrtle Beach for vacation.  Before that, we were in Houston for chemo, and that kept us busy enough that neither Sammy nor I got the chance to sit down and post.   Sorry about that, I know all you avid fans (ha ha) are going crazy without contact from us. 

Things in Houston went well for the first round of treatment.  I had a PET scan Monday , along with bloodwork and a chest x-ray.  I also paid a visit to the Sarcoma Center and met with Dr. Benjamin that day, although I wasn’t scheduled for an appointment.  I had several questions I wanted answered. 1) Could I do the first round of chemo without having the CVC put in?  See, Sammy and I got to talking, and realized that if I had a CVC line in, there would be no way for me to get in the ocean or the pool while on vacation.  I’d have to sit all day, hot and sticky, without the relief of a quick dip in the water.   Plus, I’d be covered in sunscreen everyday, which would necessitate showering, and with a line that has to be covered and taped in order to shower, well, that’s a pain in the butt.  Then there was the issue of Austin, our nine-month old nephew, who was coming on vacation and is in that phase where he loves to grab hold of anything—hair, earrings, etc.  A CVC line would most definitely get his attention, and that’s just what I’d need on top of everything else—to have him give the lumens a good tug and rip out the stitches.  Question 2) Could we change the chemo infusion from Wednesday to Tuesday, so that I’d be sure to clear by the start of the weekend, and could then leave for the beach and not miss too many days of vacation?  Dr. B wanted the chemo infusion early in the a.m. so that we could be guaranteed lab results, but if I had to have the CVC line put in Tuesday morning, that would make it impossible to do chemo until later that afternoon.  Question 3) Was he going to put me on steroids, or were we going to wait and see how my body reacted?  I don’t want to be on steroids, not at all, but I also didn’t want to head to Myrtle Beach and then be in horrid abdominal pain with nothing I could do to relieve it.

Mara filled him in on my many questions, so when he finally came into the room, he grinned at me with his dukes up and asked if I was intentionally trying to make his life difficult.  Always the jokester.  Anyway, we discussed all the possible scenarios, the pros and cons, and finally decided that we’d try for this first round of chemo through a regular vein, and wait to put the CVC line till next time.  He studied the veins in my arms for a few minutes, and thought there’d be one decent enough for one round.  I could, he admitted, get a CVC line and actually swim with it (even though they tell you in the infusion center that you can’t), I’d just have to chance the dressing immediately afterward.  There was a patient of his several years back that had to have a line in for 10 years because of the frequency of her treatments, and she was a swimmer.  She swam almost daily, changed the dressing afterwards, and never had a problem in all that time (though I’m sure it was a pain—those dressing changes take forever).  But, if I could get by without one, that was the better option.  With no line to put in, chemo was moved up to Tuesday morning (yay!), and he promised that if it looked like I was clearing quickly like usual, he’d even let us go before I was totally clear, since he knew I’d be responsible and take the meds for an extra couple of days to assure clearance.  As for the steroids, he agreed to give me a couple doses to take with me just in case, but he hoped that the I.V. dose I’d get with the chemo infusion would be enough to hold off problems and I wouldn’t need them. 

I was thrilled that things worked out so well, and had chemo Tuesday morning.  No issues with finding a usable vein, and very few side effects during the days following treatment.  A little nausea, a mild sore throat, but no vomiting and no abdominal pain.  I do just generally feel puny, even now, a week later, but that’s to be expected.  We were able to leave Friday afternoon, since I was super close to clearing even then (0.12).  Dr. Benjamin wanted me to take just one more day’s worth of the leucovorin after that to clear the methotrexate from my system. 

The two day drive across the south and up to Myrtle Beach was long, with several traffic jams and hotel issues, but we got there, and now we’re relaxing.  I can’t spend much time in the sun (about two minutes at a time is my limit), so I’m stuck under the umbrella or up on the condo balcony the rest of the time.  MTX makes me especially sensitive to the heat, and much, much more likely to burn.  I’m still having a great time, just reading and watching the ocean, eating good food, and not being anywhere near a hospital.  It’s a physical and mental break from stress that Sammy and I both desperately needed.

Alright, so much more to tell, but we’re antsy to get out of this Starbucks and onto the beach.  Might be back later in the week for another quick post.  Hope everyone’s doing well.

--Steph 

Posted by Stephanie 8:30pm CST from the hotel Texarcana, TX

Wow, am I glad to be out of the car. We left bright and early this morning, and drove 13 hours to get to Texarcana. It was an insanely long day of staring at the road, but because we've gone so far, we'll only have about 5-6 hours tomorrow.

I promised medical details on the new 'development' discovered at my checkup. I honestly don't have too much info, at least as far as treatment goes, but I'll share what I do know. They did chest, abdominal and pelvic CT scans on Monday evening, and the chest CT showed a 1cm nodule in my left lung (upper lobe). It was not on the scan that was done at the end of my treatment two months ago, so it's popped up fairly quickly. Dr. Benjamin doesn't see any other spots on the scans, which is good, but he's really stumped as to why this little bugger popped up at all, especially so soon after finishing chemo. Poor Dr. B--my recurrences keep skewing his success rates. Now, the last time I had a lung nodule, it was also a single spot in the left lung, and all they did was surgery to remove it. The decision not to do additional chemo at that time was made based on the fact that I had been in remission for 14 months, and Dr. B honestly didn't expect anything else to show up, therefore there was no need to put me through chemo unnecessarily. Of course, we now know that six months later the liver tumor appeared, and then a mere two months after finishing that treatment, I have another spot now. As many recurrences as I've had, there's no way it's feasible to just do surgery and nothing else, so I'm being put back on chemotherapy. Dr. Benny wants to start with two rounds of methotrexate (what I was on for the last of my chemo in the spring) and then rescan to see how the tumor is responding. He wants to make sure the MTX is actually effective for me (each patient has certain chemo regiments that work better for them than others) before continuing on with additional rounds. I'd hope that MTX is effective, since I had six rounds of it recently (and I'll be ticked if I did those for nothing!), but since we were doing clean-up chemo at that time, with no tumor to measure response, there was really no way to be sure of that. If MTX proves ineffective, and the nodule continues to grow, then my medical team will try a different combination to see what works. Unfortunately, the one chemo agent that has proven to be most effective for me--Ifosfamide--is the one thing I can't have anymore because my kidneys can't handle it. Very frustrating. Anyway, after two rounds of MTX and a reevaluation, Dr. B thinks he'll be able to give us a more defined time frame for treatment. Eventually, once we hit this with several rounds of effective chemo, I'll have surgery to remove it. Dr. Benjamin hadn't spoken yet to my thoracic surgeon, Dr. Swisher, when I saw him Tuesday, but he thought it would probably be possible to go back in through the incision scar I already have.

Dr. Benjamin obviously wants me to get started as soon as possible, but before we do that this coming week, he wants to do a PET scan. In his words, "You've had enough disease in enough places now that we need to make sure there's not something else hiding somewhere we can't see.". How reassuring. When I asked where he thought a hidden 'guest' might be, he said he'd expect it to be in a bone--pelvis or spine, he guesses. He said he doesn't think he'll find anything, but it's better to be safe than sorry, and I agree. When a CVC line was discussed in my appointment, Dr. B said I didn't need one for methotrexate (since it's only a single infusion every two weeks) as long as I had good veins they could use everytime for an I.V. I looked at him and said, "Guess what? I don't have good veins!". Boo. Because of that, the plan is to put in just a single lumen CVC line, although I'm still trying to convince him to give me a double lumen. If the plan for chemo changes at any point during treatment, and I end up needing two lumens, they'll have to completely remove and replace the single line. Plus, if I had two lumens and was only using one for chemo, I could use the other for blood draws and save my almost non-existent veins from total extinction. At least, that's the way I see it, but so far, I'm not having luck swaying Dr. Benny. We'll see.

Obviously, it goes without saying that Sammy and I are not thrilled (aka REALLY TICKED) by the news. We're angry, frustrated, scared, and just plain tired. Each time we go through this, it's a different experience in so many ways. I'm feeling and thinking so many things, but I'd be up typing for hours if I start to get into it, so I'll save my state of mind for another post. Right now, the mountain of pillows on the bed is calling my name, and since I've been up since 4:30am, I'm all too anxious to answer the call. I hope to post again tomorrow night from Joe and Sarah's. Night all.

--Steph

Posted by Stephanie 8:30 pm from the house

Okay. *deep breath* This will again be a short post, because time is one thing Sammy and I have not had this week. We arrived back home from Houston late late late Wednesday night, and have spent the last two days getting everything ready here to head back to Texas first thing tomorrow morning. The price of plane tickets and rental cars have forced us into driving down to Houston in our own vehicle, though we are going to be saving some money this week by staying with our friends Joe and Sarah, who live not far from the medical center (yay!).

I'm due to start chemo Tuesday or Wednesday, but before that, I'll have bloodwork and a PET scan Monday, and get a CVC line in as well. Methotrexate really only requires me to be in Houston for about 5 days total (till it clears my system), so after I've been given the all clear for this round, Sammy and I are packing up the car and heading to Myrtle Beach. July 11-18 is the Minge family vacation, and amazingly, it worked timing wise for us to go be with his family on vacation the week between MTX doses. I certainly won't feel as great as I'd like to, and won't get much time in the sun (that's a no-no on MTX), but I'm really glad we get to go. After that, it's back to Ohio to drop Sammy off so that he can prepare for band camp, and mom and I will head back to Texas for round two (geez, that's a lot of driving in the span of two weeks!). As for the treatment plan after that, it's still up in the air, and I promise the next chance I get to write (probably from the hotel tomorrow night), I'll provide the details on the new little bugger putting our life on pause.

Off for now to finish packing. Figuring out how to fit everything we'll need into the car (since we're taking Sammy's bike too--gotta keep training) will be quite the puzzle. Back soon, night all.

--Steph

Posted by Stephanie  5:25pm CST  from the Rotary House  Houston, TX

This will be the shortest post ever, cause we've got a lot to take care of, but wanted to let everyone know that I saw Dr. Benjamin today for my first checkup since finishing treatment, and the CT scans done last night showed a metastase in my upper left lung.  Yep, cancer's back already.  Gotta go back on chemo, eventually surgery--the treatment plan is still very much up in the air. 

One of us will be back on later when we have more time to fill in the details.  Till then, please pray.

--Steph