What could be the worst side effect of them all?

I have had terrible pain which kept me awake at night, super dry skin, a terrible rash, my hair has fallen out (does anyone feel sorry for me yet?), low blood counts...blah, blah, blah, but I have decided the king kong side effect is bloating. No it is not just tee-hee, hee I have slipped a little gas. It is like I am so bloated I cannot get my pants on. Terrible, it has only been five days since I could wear my jeans, loose mind you, what the crap?!??!??! My new wardrobe, comfortable as it is, is pajama pants and t-shirts. Yeah, I joked with Craig I am going to have to buy all new clothes if this doesn't go away, and I just plan to go to the wal-mart and get tight yoga pants and little baby tees that don't cover my new gut. The actual side effect I am experiencing is possibly related to a new chemo drug, which here is what it says: call your care manager if you experience an increase in girth (awesome), or it could be related to another GI incident I had, and the drugs they gave me afterwards, OR in the fun way I like to roll all three!

So, let me catch you all up. I have had some stuff (crap) going on. In late September I was hospitalized with what was discovered to be an upper GI bleed, those side effects equaled Sharon just feeling really bad and having to lay down a lot, with all her nice family having come to visit. At that time I received my first transfusions of blood, and an extended three day vacation at the hospital, but all was well, and within a week I was back as regularly scheduled to the CTCA for scans, plans, and chemo.

The trip to the CTCA was more eventful than I would have liked as apparently some cancer was confused and the current chemo I was on didn't faze it anymore, so there was a "mixed response." Sucky. After talking to the oncologist and we being his prodigy patient and her husband, we all came quickly to the decision to make a change to new and fun drugs. I have now changed regiments. That was just last week on Thursday (10.21) which seems forever ago now. I actually was pretty excited about one of the drugs he picked because I had been on it before and it was awesome, so I expect the same thing to happen now. So I got the new chemo and it actually is pretty nice too that they don't take long at all to infuse.

The latest fun was on Saturday (10.23). I got up and kept feeling like I was going to pass out, maybe it was nerves right before the OSU game? Hmmm.... but no. I had some breakfast and thought that would help, nope. Plus my body was telling me for sure something was wrong, like the last time I went to the hospital, we knew I was probably bleeding again, so off to the hospital we went. Funny, after you do this a couple times, we packed. I had a bag of stuff so that I was prepared. Total mess. We got to the ER, I couldn't even walk my dang self in because of my pass out problems, that was weird not to be able to actually take myself somewhere. Turns out that during the OSU games in Columbus the ER is pretty empty, plus when you act all weird because you are going to pass out you get lots of attention. Anyway, they figured the bleed, but before they addressed it, fluids, blood, GI scope and some fixin' they decided to do the worst thing I have experienced, (this is still better than the bloat because it was over in 5 minutes). They took this thing to prove I was bleeding into my stomach or in my stomach by shoving this piece of crap up my nose and down my throat!!!! They promised to get the GI doctor to fix the bleed if this happened and I was on board with that. Turns out they are not ER people of their word, no scope that day. They took that dang thing out pretty fast though and probably irritated the bleed I had because later we learned it was in the throat. Ugh, just thinking about it now, totally gross! They did do the scope on Sunday, in the meantime I received blood, platelets, fluids, antibiotics...blah, blah, blah... and was super doctored. I was on a floor they were watching me close, all hooked up to monitors, not allowed out of bed for anything. I learned that yellow socks with the grippies (which my question was why are they on the top and bottom of the feet, what the crap was that all about) meant fall risk. I felt like I was on the super old person sick floor which sucked! Anyway...after Sunday things certainly settled down and I felt much, much, better. Then it just became a matter to ensure I was stable enough to go home, it was a bit complicated because my platelets and red blood fluctuated as it should have because I had just received the chemo, so Tuesday it was looking good for going home, but I had to wait till Wednesday. We got back after 6:00. Long days.

I have to give kudos to my husband Craig though. He worked the whole time, had to run all around to take care of the dogs and was visiting me. I think it is also hard to have to watch the person you love go though hard stuff, but he always brings encouragement and stability to the situation(s). I am always amazed at his faith because it is simple and final. He decides that something will be good and just takes good faith in it right away, like changing drugs. He never seems to return to that decision to wonder about it or anything.

Anyway...where I am now is working on growing some platelets and just recovering from sitting around all day. I have to go to my family doctor next week for a check up and then we all can decide when I am well enough to return to chemotherapy, which I failed to mention will be two weeks on one week off like before but I have to travel once a week for the infusions, that will be the main change, unless this bloat business doesn't get taken care of and then I will be needing the doctor and a drug switch!

Another chemo, another day

We are back from Philly! Thank goodness. I do not like to spend any more time than I have to there. It is too bad because I like history and the neat things there are in the city, but it will always be the chemo/hospital/CTCA city to me.

The test went well!!!! It was so nice to have another appointment confirm that these are the drugs and they seem to be operating effectively and quickly. I even dared to ask the oncologist how much longer do I have to take this mess? Ok, so here is what he said, I am sort of nervous to even think of saying it out loud because we are prone to things changing, and not for the better most times, but I am excited. So he said at least four more, so if the drugs do like they have been I think it is totally reasonable to think four more treatments could be it. In this "set" of chemotherapy there are 6 treatments, so I just finished 2, and I received the IV portion of the chemo on Friday. I will then complete the rest of the 3rd treatment with two weeks of pill chemo. That means 3 more. The idea of being free and complete of drugs, growing hair, not having so much dry skin that I feel like sandpaper, is just wow. This whole thing started last July and so, so much has happened since then, so many things I could not have foreseen (surgery, chemo, chemo, chemo) that a possible end date is so uplifing to my spirit. Hopefully the blessings of health continue and there is no question 3 more treatments will be all that is needed.

Nothing else really happened. I still don't like the port. It was weird to have it "accessed" for the first time. They actually stick this needle right into the middle of the bumped up port which I didn't realize (gross) plus it stuck out. It was sort of like being stabbed. Take a deep breath, poke! Ugh. Oh well, maybe only 3 more pokes!

I am feeling some side effects today and yesterday. It is like you had a super hard weight training workout and your muscles are sore, but if you press on the muscles too they are sore. That's not really too bad, plus it passes as I get farther away from when they administered the IV drugs. I should get my chemo pills monday then I will start trying harder to keep all my skin from flaking off. It is really weird because the dryest part has been on my face and it is flakey skin (sorry, I know gross) around my eyes and under my brows, and it is getting worse moving to around my nose and mouth. People that don't know me must think what the heck is wrong with that lady? And oh well to that too, I will take this over the face and mouth rash any day.

My very own outlet

Yep, that's what I feel like I have with the newly placed port. BLEH. I hate the idea of something being inserted under my skin that I can feel. Gross. It made the chemo go better for me, but I also think that it is easier for the CTCA, which I really don't care about. :) It is all about me. It was worth it to not have that terrible burning in my arm after wards. The surgeon told me after out chat about the procedure that I would think to myself that I would wish I had done this a while ago. Wrong-o! I do what I have to do, but I much prefer to me all myself without plastic under the skin plugged into a super vein. If I could have it out tomorrow I would. Well if that wasn't running on about stuff I really can't change. :)

I do have some good news to share which I am super excited about, my new drug cocktail is doing super super super awesome! The way that we can tell is they did a tumor marker (measured through a blood draw) and it went down a bunch! That is a huge blessing and relief. I received another dose of it yesterday and am taking my at home chemo so I am looking forward to the next appointment because we get to see the progress (please continue!) on a PET. Then maybe we can talk about how long to be on drugs AND how long to have the port.

It has felt like a long time since we have had good news. Last year in July the bad news started and just kept on rolling. Sometimes I can't believe it has been a year that we have struggled through this setback. However, I am very hopeful for this to be the last of the cancer and turn it out for good! Thanks friends for your prayers and for your support. :)

Wow, has it really been that long since I have updated the blog?! What a slacker!

Well, the last time I updated I had the last of the chemoembolizations, thank goodness! Since then, I have had the same chemo cocktail that I had before the embolizations, it lasted for about three weeks, then I had a week off. Not too terrible. There were some side effects but nothing too out of control. Then we went to the CTCA and they can tell if I am still making cancer enzymes through a blood test and it really didn't seem to indicate the super awesome-ness that should have been there. Crap! So new chemo cocktail was prescribed for July 26th, I have just finished that today. I have one part iv chemo and the other part pill chemo. I have had the take home so far it is ok. I will be going back Monday for some more chemo and a port. Who wants more procedures and scars, I do!

The first treatment of the new iv drug was not fun. It burned the veins in my arm terribly and the burning and tingly vein feeling did not go away for a long time. It is my bet that I get at least 5 more of these treatments, I cannot imagine having pain while getting chemo and then going home with it. It probably didn't help that I fell asleep and thought I was all good, and woke up to super tingly veins, but too bad. There was no time that day for a port and I was going home with that chemo administered.

Other highlights of the past couple of weeks include: 1. we met the most horrible "helpful" nurse that works for my oncologist, totally messed up our schedule and didn't listen (I cannot even explain how awful it was). We actually complained officially about her. 2. My hair has not all fallen out. 3. I am having weird side effects, like my fingertips are super sensitive and the palms of my hands are like thin skin and cracking, so weird. That means I cannot even open any plastic toppers because it hurts! What a mess! Other weird side effects, there can be super sensitivity to cold on this regiment, like your throat and face. For example ice water could make pain in your throat for a while. Fortunately I do not have that but I do have a bit of cold sensitivity for ice water. Not enough to curb eating ice cream, whew!

I think that is all the exciting news. I do have to say I am feeling better so to me that means that the chemo and chemoembolizations are doing their good jobs.

Good news

It doesn't seem like I get the opportunity to report good news much, but this time good news. On Monday when I was at the CTCA for the third chemoembolization they did an MRI of the abdomen and decided, no embolization because they had done a good job. I am now able to go back to the oncologist for the next phase of the treatment. I was very relieved not to have to do the embolization again. Bleh! I am still very relieved that the test had good results. It felt like we were in a rut of bad news this year so it was nice to have that broken. Plus there were some things which were worrying me before we went out that I thought might point to more bad news, but it turns out I was worrying for nothing.

So here is where I am now, I have an appointment for a PET and an appointment with the oncologist next Thursday and Friday. I am hoping to get a big dose of chemo then. :) I sort of feel blah these days but I have learned that is because the lymph system is congested, don't read that as cancer, read that as congested. The liver has been through a lot and I think all the garbage from the cancer buisness taxed out the lymphs which is making me feel not great, but I will take it. Good results, the body working to get everything back to normal, and the doctor not really seeing any issue with any chemo that is non-toxic to the liver (which is what I was on before), I am in a git-er-done mood. I am as excited as a person should be hoping to get into a chemo treatment.

Thanks for all your prayers, I am sure that Jesus lent me some grace to not even have to go through the surgery, and then bring good news. None of that was anything I was praying or hoping for at this point, so that was a nice encouragement to my spirit.

Bonus Round!

It would almost sound like I was lucky. My luck doesn't seem to equal the easy way though. Two weeks ago my surgeon who does all these chemoembolization informed me he wants to do another one of these things. We are headed out today to get this one done tomorrow. I am super extra hoping really hard (how many descriptive words can I use here?) that this will be the last one, and it is effective and we can move to the next phase of treatment. From what I have gathered there is another vessel that the surgeon wants to treat from. He did not really tell us his plans when we saw him after the last surgery so I was not able to ask questions that I still have. That was a bit disappointing from them. This is another one of those times where we have learned from experience. Feels like we gain too much in this area. Ah well.

I was trying to think of what else is going on. Not much else unless you count my advanced course in learning patience and trust. Perhaps Jesus is teaching me at a doctorate level now? Maybe that is a hopefulness on my part that I have even reached a higher level of understanding or learning. :) It would be false to say that I don't have my doubts or worries, but I certainly don't want those things to weigh in at a higher rate. So patience and trust it is to the best of my imperfect ability. This route was planned before I was born, I was made up in a way to have cancer, and then to be able to deal with the journey.

Thank goodness they let me work some. It is such a pleasure to let my mind rest on menial work tasks rather than think on cancer and how that effects my life spiritually or others lives.

Wow, I didn't mean for this to end up all thoughts and feelings, but when you are knee deep with this cancer mess, or waist deep, (who knows?) you certainly reflect and contemplate many things. Much that you thought was important and priority is stripped away, and you are left with basic priorities. Spouse, family, health. Who cares about money, job, mortgage, leaky basement, termites, that can all be annoying and tough but all replaceable.

Ok, that is certianly enough of the rambling mess now. I am out of here today, the emobolization is tomorrow at 9:30. If you pray, I humbly ask you to mention me in your prayers.

New protocol

For this second chemoembolization they had some new stuff. New awesome stuff. The way they put the chemo into the liver was so much better. The CTCA had said that this new way seems to have less side effects, and if you look at my case, oh yeah. I did not take any pain medications. I have not taken any anti-nausea. I have been up and feeling a ton better and faster. I have realized that the last time I had this done I do not remember much because I was out of it alot. This time I was not on drugs so it is like I was awake this time. I am not perfect. I have been sitting around a lot today. I feel pressure sort of in my abdomen. I am tired. I am having some sore muscles side effect, which I have had before from chemo, but this is nothing like last time at all.

I have been blessed. I thank you for your prayers because how could this be without Divine intervention. Also, I am able to travel this weekend with Craig to go to a funernal which I know otherwise I wouldn't have been able to.

Now the hope and prayer is that this is all I need for chemoembolization, and I can get back into the chemo routine and finally get this thing kicked out for good. There will be a PET scan in 5-6 weeks and we'll see how this mess all turns out.

It is that time again

Chemoembolization number 2. I think I just like writing that because no one knows what the heck I am talking about. It is funny I had to explain exactly what it was to my regular doctor because apparently it must be special. Oh so special me.

I am off tomorrow to get the second one of these things. We are leaving at 6:00ish and getting to Philly at 8:00ish. Then at 8:00am Wednesday I start the process again. 85% effectiveness. I hope so. They have not measured anything so two of these will be past and then we will be able to find out what the verdict is. Scans cannot be done until time has passed for the liver to heal somewhat. Apparently whenever there is a change to the body done from surgery the area "lights up" and it is hard to measure exactly what is going on. So all of these weeks waiting to have good blood to do these chemoembolizations and we will not know how awesome they are for another 5-6 weeks.

I hope to be back home on Thursday so I will make an update when I feel like I can actually read. I swear all the drugs made it hard to concentrate. I enjoy reading but didn't read one book while I was off the first time. Anyway...I welcome any prayers. Prayers for effectiveness and for protection so that I do not end up with an infection or a sick liver. Thanks friends! Hopefully I will be back here at home with the computer before I know it!

Disability approved!

That's weird. I have had to use disability because I have no leave. This is the best way to be able to go and do surgeries and chemo, but I don't feel disabled. Most times I don't even feel sick. It is sort of depressing to be put under a term that makes me feel like I need a handicapped parking sticker and a motorized cart to get groceries. Oh well. I do say a lot, things could be worse. I am blessed to even be able to have some sort of means to get paid while I fly for treatments all the time. I am blessed to work with and for folks that just deal with the issues, especially since they are like an annual thing. I am blessed to be back at work too because I was going insane looking at too much tv and needing more of a purpose. This helps my mind feel fresher and like I am contributing to something which I feel is important. Yes, even though it is a State job which comes with a stigma, I like what I do and feel like it is a good thing for folks that get served.

Let's do it all again

The next chemoembolization is scheduled for May 12th. I am ready for that business to be over, and get back to chemo. The schedule and plan for the next step of treatment is still getting worked out but in the next 6-8 weeks I should be back to my regularly scheduled drugs. Other than waiting and being somewhat bored at home, things are going well. I think I would enjoy my time home more if I could do more projects. I look at all the stuff I want to do and it is frustrating. Oh well. That must be a good sign I am doing and feeling better.

Me and myself!

We seem to be the same again. Yesterday I decided no more drugs! Now that sounds pretty awesome, I will even go as far as saying, "Just Say No!" Ugh, I had felt a little (or alot) jittery where I just wanted to nervously move any body part. Weird. Oh that was probably oxycontin, yeah, lucky me, plus the two anti nausea drugs which were not exactly pepto bismol. I am happy to annouce that I am drug free for one day and there is no pain (whoo-hoo!!!) and no nausea (double Whoo-HOO!). I even stopped cold turkey.

I was all worried I would become an addict after my thoughts while lying in bed, being jittery, and not sleeping were it would be so much easier if I took the drugs, no! :) It has only been a week today and I am just so happy to be feeling well and safe, and without drugs. I thought the way I was feeling which now appears pretty drug induced that I would be feeling crappy for a couple more days. So happy, so blessed. :)

Turns out that...

The CTCA did not give me the right combo of drugs for anti nausea so that was part of the problem. After lots of no eating yesterday and calling the center we discovered that I have to be on two anti nausea drugs. I am a little disappointed they didn't discover that earlier because in the hospital I had the same over lap of drugs because they were looking for what would work. I am glad that it works now. I was nervous they would make me go to the hospital because of not being able to eat or drink.

Anyway... I think I feel better today and I am getting used to some of the drugs, moreso, because I am not sleeping as much. :)

Druggy blog...

As I sit to write this I feel all druggy so friends, I am going to need a bit of grace if I write something goofy.

The surgery went well, so the surgeon says, and that pretty much is who counts. I did have some sickness and am still recovering at home. I think I am better today than yesterday so that is how I am judging success for recovery. Pretty much all the drugs they have given me for pain and anti nausea are all with a sleep side effect and don't drive your car. So I guess I am not going to be going to many places. Not that I really want to. Craig is here with me today trying to find something that I want to eat, so I hope that works. All of his masterful culinary skills and I am like ehhh, I can't eat all that or whatever. I don't like that but what am I going to do. I can do yogurt. Is a steady diet of yogurt healthy?

Well, more updates will follow. Hopefully the next will say how I have just bounced back and need no more pills!

Soooooooon....

Tomorrow is Thursday. We have travel plans to get out to Philly tomorrow evening so I can get up bright and grumpy on Friday morning. The grumpy will be due to the not eating and being at the hospital! I am not nervous yet, but we are far away from Philly right now and today has been fairly normal, well except for all I am doing at work is preparing to go on disability. If that isn't something to make you feel sick and decrepit I don't know what is.

Friends, I would welcome your prayers. Like I said I am not nervous yet, but it will come. I hate giving myself over to a situation that I can't control. Tada! That is probably the root of a million different problems I have. :) But I am confident this is the right thing to do. I pray that it is effective and efficient. Extra mercy from God would be to not feel run over by a truck and my liver would be strong and hearty. Unfortunately I will not be able to write updates till I get home because the CTCA wants patients to use their patient website for blogging their cancer journeys. I didn't even know they had something like that until I tried to access the blogging sites there and they are all blocked. I pretty much refuse to use their sicky cancer blog site because it is a sicky cancer blog site. :) All that to say I promise to get you updates as soon as I can.

April 9th

I have been scanned now there is a plan! I had a PET scan and MRI on Thursday and met with the oncologist on Friday. These new drugs are doing a good job. I was super relieved to hear that. It was funny (not really) when we first met with the oncologist there were computer issues and he was not able to go through most of the scan results with us and based most of the drug reactions to the measure of a tumor marker (that is a measure from a blood test, I believe it is a measure of enzymes to see how active the cancer is) anyway, it went way down which was super positive, but I am one who likes to actually see that the actual cancer has diminished. That is probably part of my personality and enhanced somewhat by my job with things being very definitive and measurable. He also said initially that some of the areas had not changed which I was also disappointed by. Anyway, when the computers came back on line I was getting some medicine in the infusion room and the physician's assistant for the oncologist came to see us, and was able to tell us good news. There were places in just two treatments that had their activity measured as less than half. That made me very happy.

But this is the plan, when we met with the oncologist we decided to do something called chemoembolization. That is the procedure I was hoping not to have to do, except for it is very effective, and super fast acting. Chemo can gain the same results but it may take longer so this will get us to where we want to be faster. This is a procedure which will target the liver. I will have to have this surgery twice because I have issues on both lobes of the liver. I am not excited about this (medicial people will probably think this is cool, but I hate health things, lucky me). The procedure will be threading a catheder up into my arterie and putting intense chemo into the liver, three different kinds, that I don't remember. I do remember one I have heard of and patients call it the red death. Sounds pretty awesome huh? And then they put in some other agent to keep it all stuck in there by blocking blood flows to the liver on that side. So it is not a long procedure 2ish hours. I have to be in the hospital one day as long as I am able to pass all their tests to leave the hospital. I will be sick. It will be like a flu-y thing, and I guess there could be some pain. There is a small risk for liver failure so that is the small worrisome risk, but we all do the things that we need to do. The first procedure is scheduled for April 9th. It is possible that I will be able to get the next procedure in four weeks after as long as the blood tests and healing show I am healthy and ready for round 2. Oncology and the surgeon that is doing this procedure think this procedure is super cool because they can do it a bunch of times. That is sort of cool unless you are the patient, so lets hope two times is the charm in this case. The oncologist is always so super positive, he talks like it will just take care of the issue, and says it is like 85% effective. The homeopathic doctor has said it is not as toxic to the body because chemo is not floating through all of the body systems. So here we go. And ps, the icing on the cake will be more chemo when I am able to take it. There is always more chemo, so at least we know that these drugs are doing it.

We chose the 9th because I want to go home and be with family at Easter. It will be the Friday after Easter we return to the CTCA. Last year at this time we had to stay home at Easter, which dissapointed me, so that we could fly out so I could have a lumpectomy. I am not super cool with Easter/springtime turning into an annual surgery event. I do have to say, I am relieved to get a break from the chemo until I get the surgery and then end up not feeling too awesome, but right now it is nice to feel relief from being a germophob and some side effects.

The worst hair ever!!!!!!

No really, and it has nothing to do with it falling out, well except for I got the worst haircut ever. Ok, today I was having a bad hair day (surprise). I had that last haircut and told the haircut lady at best cuts (sure) to cut the sides with a guard and keep the top longer, she seemed to be going for a 80's shaved sides long top for a minute (gasp) and I guided her out of that mess into another one! Today if you would give me a little slimy hair goo, and a little square mustache, hmmm, Hitler hair! No joke! I had my hair dyed dark a while ago which didn't really help matters! I came home and told Craig that I had named my hairstyle, and to guess what it was. He was going to, then panicked as a good husband would, and then confirmed that is exactly what he thought of when I brought it up! What an incredible mess! Thank goodness for the lady at work tomorrow who is going to help me fix this debacle!

My hair, my hair, my hair is falling out

At least it is not so cold. It is crappy to have to wear scarves and a winter hat. I am not bald yet, but it is falling out like nobody's business. I got it cut short. It is so messy when it falls out. Oh well. It gives the impression I have some hair yet, but maybe when I wash it I will wash it all off! I have had it much longer than I expected so it could be worse.

Soon comes a moment of truth

I have finished two whole chemos (3 treatments equal a whole treatment) - thank goodness! Last Friday went very smoothly, my mom went with me. I had a few less platelets than they would like so they gave me a 75% dose, now for those of you who mentally calculated 25% less effective, that is exactly what I thought, but the physician's assistant said that is not the case. So it had better be working hard! It also turns out that I am prone to blasted thrush on this chemo. Oh I hate it. At least it wasn't as bad as last time. Anyway because of being on the chemo they don't want to give me magic pills to make it go away, but instead I get these lozenges that are like the white tums and you have to suck on them till they are gone. Gross. I am so hoping that this will be the last time and not be a chronic thing.

But this will be the week with the moment of truth. I get a PET scan on Thursday and and MRI. At least I don't have to drink anything. I am nervous. I will probably be all crazy my Friday, I don't even like to eat if I think they are going to tell me bad news, I tell Craig I am going to toss my cookies right in the waiting room on the doctor. A couple of times Craig has encouraged that. This week will decide the big plan for the rest of treatment. I am sure there will be more chemo, but there could be super chemo in there too, which this is the time they are going to be deciding that. Let's hope I can be a good enough patient for that.

On a positive note, we did learn that our friend that has breast cancer as well, and has taken the same drugs (I have one extra) her whole primary tumor went away with six treatments, and there were no issues found in her lymph nodes! This is very good news. I am not sure how common it is for chemotherapy alone to kill an entire tumor. We are super happy for our friend, but at the same time that has encouraged me too. It makes me hope for a dramatic change as well.

Treatment 2, round 2.

In case that title sounds confusing, don't worry, there is some sort of system that the hospital uses to count the chemos and I don't get it. When I think I do, it always leads to some sort of confusion with the oncologist, nurse, nurse practitioner, or maybe just everyone.

Everything when super extra smoothly yesterday. SO, so nice. My sister Jenny went with me to the treatment to "watch" me. The planes were on time, there were no lasting side effect issues to talk about, the schedule went pretty much on time, so I was so happy. Plus we learned something very important. The patient has their own tv (see how important) and they recently changed the format which has been nice, but we discovered that they have movies on there that you can choose and watch. Well neither of us got into that Twilight craze, but were interested because of the amount of people who said how awesome it was, so that is what we did for a bit of the time. It was pretty good. Now they need to get the sequels on there so we can watch those. :) It really is nice to be in a routine.

The only thing that is sort of weird is that I was taking a drug that I am not taking anymore because I have had a lasting side effect from that. It is to do with the kidneys. Nothing seems to be breaking down, nothing hurts, everything works, but I wish it would get better. It may be a time taking thing. Oh well. Plus I am trying to help that mess out with some homeopathic supports.

So things are well. I am getting well-er. One more treatment in this round. A week off, then the moment of truth! It will be here in a minute!

And Jenny and I are going to breakfast this morning and a little shopping! That is going to be awesome!

No way!

The second set of treatments has begun. I had my week off after three treatments and I was back to the CTCA Friday February 26. I have been feeling A TON better. All the little sicknesses and annoying things are resolved, it is so nice. Now all that is left is the regular chemo stuff, which for me is not too bad, I can go much longer with being careful of germs, some muscle soreness, tiredness, that's not too bad. I did not do well with the super thrush sore throat and weird rash in the mouth business. Thank goodness that is all taken care of. PLUS everything went super smoothly this time with appointments and such. Not many people were able to make it to the CTCA Friday as Philly was under a weather advisory and some airlines had cancelled flights. We (my mom and I) were super fortunate, we left and got to Philly nearly on time. Then with not many people there, there wasn't much of a wait for blood draws, or chemotherapy, so that was a bonus. We did end up having to stay because our original flight back was cancelled and then we were unable to catch another flight out, but got back into Columbus today around 1:00. It was on time too.

So, 2 more treatments, which I hope will be doing a lot of stuff... (they better be!!!!) and then we figure the rest of the plan. I am nervous excited...hopeful!

They said this week in Philly that the weather is supposed to be sort of crappy on Thursday so I hope we can make it out this week. If I miss a Friday, that will mean the treatment ends up going to a new day, and Fridays are nice because the weekend is there in case I need recovery time, or get stuck in Philly!

Three chemo treatments down!

Three treatments down. Finally I think we are in a routine. That makes such a difference. Last weekend we actually were able to stay on schedule, and we traveled out to Philly on Friday and ended up staying the whole weekend out there because of the weather. It was nice this Friday to be able to go out and back smoothly.

Everything is going well. I had some issues starting up with the new drugs, just like any of the other chemotherapy regiments that I have been on. I am feeling much better now with the third treatment down. I think this one sort of had me on a rough start so I didn't feel much like blogging, or doing anything. (sorry I feel bad I know you all are wanting to be kept better up to date) I had more of an upset stomach, I was drinking a lot of tea to help settle that down. The face rash (and upper body rash) came on in a big way so that has been sucky. Imagine being 16 with bad acne, red, with white heads (more like blisters with the face rash) so it is probably the worst part. Oh and it ended up also appearing in my mouth so that has been interesting. See I was falling apart, so there was no time to blog. :) The CTCA gave me some antibiotics to calm this stuff down, so I was super grateful for that. Turns out that I still have a good bit of hair, I am not sure what that is all about. I expect that this week it will probably take it's leave, but will see. Maybe these are my hearty hairs and will try to stick it out. I also ended up discovering I have thrush, how weird is that? For that they gave me this liquid medicine, so it was weird to travel with that on a the airplane that was over the limit of liquids. It turned out to be safe after the TSA x-rayed it extra. I want you to know what a good job they are doing. :) It was pretty cool to be able to go in the family medicine lane because we got to skip to the front of a long line, there should be some perks on the chemo and all these drugs right?!

Anyway, this should be an awesome weekend. Craig and I are just happy to be in town. It is so nice to be home and feeling normal (this is normal for me on chemo) and being able to do things in our house, and actually being here with our dogs and no one having to take care of them for us. AND this Friday coming up I have my off week, so I feel like that is a rest, if you can't tell that I am looking forward to!

For those who pray for me and this situation, I do want to thank you, I think for me this has been one of the more challenging times in (January/Feburary) my cancer journey, and I know that your remembering me in your prayers has helped to bring me through to a good place.

The week is finally over!

What a week it was. So much has happened. This is the part of the cancer journey I am not sure I could convey to you unless we were talking. That part when frustration, bad scheduling, and changes in the doctor's decisions make life very crazy. I believe it has calmed down now. There is much I could say, but I am going to keep this brief.

On Friday the 15th, I was at the CTCA all scheduled up to get the chemo. On Friday they changed their mind. I went home for the weekend. We were back at the CTCA on Monday all prepared to get some radiation, I know what a change! So turns out that someone broke the machine, we had to wait on a part. Monday wasted, however they did try to call and tell us not to come, but we were already in the car on the way over. Tuesday, things get started, Wednesday radiated. On Friday (yesterday) there was a question as to whether chemo could happen, the radiologist had suggested a week in between radiation and chemo, Craig spoke to the oncologist and it was a go, yay! I wanted to get started. My mom and I went out yesterday for the chemo. We also have to meet with a doctors assistant who I do not like. Unfortuneately we will have to meet with her every time there is a direct chemo (that means chemo without seeing the doctor first). This is the second time that she has made comments that I have not appreciated. Such as, her first comment upon seeing me was " I know you are not here for chemo." Well we were on the infustion floor, and they were at the time taking my blood, so pretty much there for the chemo. Who wouldn't want chemo?! She was still under the impression that I was still on a week lull, which is fine I know her job is to make sure that I am safe, however to question me in such a way, and then also to not say hello or anything else, wow, she is on my list. She has also questioned my choice of homeopathic doctor telling me that he is not qualified to take care of the cancer issue. So I think we will probably be friends. :)

Anyway my favorite part of the whole thing, was that I had called Craig to see exactly what had happened with the oncologist and where these wires might have gotten crossed. I was on the phone with him when the doctor's assistant came over to give us the news that there was not going to be any chemo today. I had laid the phone down and Craig could hear everything, but then he yelled into the phone that he wanted to talk to her. It was so funny to me because he was at his desk at work and he was yelling to talk to her. It actually was a good talk because there was much that happened and a lot of disrespect of our time and such.

Like I said much happened this is not even half of it. I still like CTCA, but this week has not been their typical care. I got quality attention and care, however the schedule and such total mess.

I am looking forward to getting into a routine, and the chemo and getting this thing finally kicked in the butt. :)

The Results Are In!

I know you all have been most anxiously waiting for the conclusion of the follow-up doctor's appointment. So here we are. Remember how I told you all Craig tried to prepare me for a maybe not so awesome response? Well he was unfortunately right. It turns out that the drug I was on failed, and there was proof to show that. That means, new drugs and a new protocol. I will be on a 2 kinds of chemotherapy drugs, some sort of new hormone thing I have never been on, and 2 other drugs that I have been consistently on. Doesn't that sound fun!? That is a lot of drugs. Wow. It will be good though because one of the chemo drugs is a derivative of a chemo drug I was on before which was awesome. I am much more comfortable with this therapy. This will be a little bit harder protocol though because I will be out getting chemo every Friday. We'll deal. The first treatment in the new protocol is Friday the 15th next week. The oncologist did not give chemo yesterday because he likes to break the chemo cycles when he is changing it. I was already overdue for another chemo so that is probably the fastest to get it. I super want it. I am ready to get the better drugs and get this thing going. The whole drug side effects will be pretty much the same except for I will probably lose all my hair so I will probably be getting a chemo cut this week. It is just so messy to try to save any of it and it is depressing when you get handfuls of hair. A new thing that I have never experienced that people get is a sort of rash on your face that resembles acne. How awesome is that to have in your 30s? :) Apparently if you get this rash it is an indicator the chemo is doing a good job for you, so I expect to get it. At the CTCA they called it the "war rash" which totally cracked me up. As for the procedure, not happening yet. We are going to do a little chemo and see if it is necessary, I bet it will be because I am super lucky that way. Anyway, they can do this thing a bunch of times and that is what I am hoping to avoid. It is actually a short procedure, so it is almost in my comfort zone, but I will do what I have to.

So that's the news. Not what I had hoped to report, but such is the way of the whole cancer treatment at times. This is the only time a drug has failed me in 4 years so that's pretty good.

I think I may go shopping for new hats today. :) Especially winter hats, it is super cold out when you have a bald head!

Heavenly Appointment?

I neglected to mention that I actually had an appointment conflict on Friday. I had an appointment with my homeopathic doctor, it has been scheduled for something ridiculous like 6 months. These appointments are super sought after, and I feel it is very important for me to go for a number of reasons, but I haven't gone into a lot of detail about him here. Anyway, I was super upset when I found out I had double booked the appointments, I had even thought about rescheduling the chemotherapy appointments because I had really wanted to go to this appointment if that tell you anything, I considered the appointment with him as important as the chemo. I feared that if I canceled it would take months before I could get an appointment again. I had tried to call him last week so that there would be as much time as possible to maybe reschedule before the appointment on Friday. They were closed for the holiday which I don't blame them for at all. Today when I was finally able to get through, they were able to reschedule me for 1/13 which is a better appointment because I will be able to discuss all of what the oncologist has said and go over the PET scan with him.

Always, always, always, I feel like Jesus has been in charge of my cancer treatment. Whenever I have needed something, he has made an opportunity or brought an issue to light. This is just another one of those times. It makes me so excited because this is a way I have been able to connect more personally with Jesus and it has strengthened my faith by having these benchmarks to look back at and know he is orchestrating things I need in my life. I also feel like perhaps this is his true agenda to show me Himself and strengthen my faith while healing cancer. This is the amazing part to me, and it is hard to communicate this part of the cancer journey, the spiritual part so hopefully this makes some sense.

A Healthy 2010

I remember the beginning of 2009, I was thinking finally the year that ends the cancer. I have a tendency to think that each year, and that is what I am thinking this year. Last year started with the cancer just being blown up and great oncology plans which all came to pass, then the goofball cancer did it's regular thing and revved all up again. The end of 2009, certainly is going the same way, there have been a few bumps, with the sinus infection, and extra scans, but still the chemo was doing it's job at the last PET scan, and fast too. You have to love that response and it keeps me all positive for more chemo and gettin' 'er done.

So now this week, I feel like is a key moment, January 7-8, it is scan time, I should receive the 5th treatment in a series of 6 chemos. In this appointment, we get to talk to the oncologist (finally), a PET scan, and then we get to consult with some other team for a possible procedure, I will share that if it comes to pass otherwise just know I HATE to be poked and prodded, and under anesthetic.

My hope and prayer for the coming days is for an AWESOME PET scan. Craig has tried to prepare me for a not super awesome response because I had to wait for more chemo with the sinus infection, and even this next appointment has been delayed a week because of the holidays, and his thought is waiting may not have provided as much response as usual. We'll see. I still have high expectations. This is a pivotal point because most likely it will decide if there will be another 6 chemos, if I have to have a procedure, and there is a really important question to answer which is what is the care going to be when this PET scan is squeaky clean. Lots of stuff. I hope for good answers and continued health blessings. If you pray, I would love it if you thought of me this week.