Scans

These past several months have been very stressful for me. It has been a roller coaster ride as far as stress goes. My peak stress would be when I was being diagnosed. Uncertainty is something I really don't like. None of us do. And back then there was so much of it. I was thrown into a world where I knew very little. I had never even heard of a sarcoma before, and in just a few weeks from my first appointment I would find out that my "arm strain" was really an aggressive bone cancer. Believe it or not, my stress dropped a lot when I found out the diagnosis. I finally knew what was wrong with me, and I was ready to do whatever possible to be cured. I was more stressed during the first three cycles, and surgery than these past three cycles. I would be constantly feeling my arm to verify that the tumor was shrinking. My fear of the treatment not working was obsessive. After surgery I hit a low in stress over the past year. The cancer was out, scans were clear, surgery went well, and I had just three more cycles left of chemo. Over these last three cycles I have seen my stress progressively increase. The fear of leaving active treatment is scary. When I had treatment ahead of me I felt more secure than I do now. The completion of treatment creates one devastating question. A question that just isn't going to go away for a long time. Will the cancer come back? The stress is getting worse at a faster rate each day. Now that I know my scan date of April 4th, I am already getting that scanxiety. I'm not going to read my results online when they become available this time. I don't want to get myself worked up over nothing like the last time.

I don't really enjoy explaining this, but its an aspect of this cancer that has really bothered me since the beginning, and as followers of this blog I think you should know this. I'm going to explain this once, and really simple here.You may remember a few posts back when I discussed Ewing's Sarcoma in great detail. Metastatic disease at diagnosis is really bad. It is the biggest factor when it comes to the prognosis of this disease. Want to know what's just as bad if not worse than that? A recurrence. When this disease recurs it will most likely be in the lungs or other bones. In my particular case I have about a 10% chance of this recurring. I'm not sure I like that number, but I'll take what I get. It could be worse I guess. I just don't like the idea of playing Russian Roulette every few months when I have scans. If this is going to recur it's going to most of the time happen in the first two years so it will become less stressful with each clean scan.

To sum up that last paragraph...I have very good reason to feel scared, especially when I'm anticipating scans. If I didn't feel this way then there's something wrong with me. I'm very well informed of what this disease can do in reading news articles, and other Ewing's blogs. I'm well prepared to take on anything that happens, but let's just hope that my post on Wednesday is my last regarding treatment.

I think that the only thing I have to combat this stress is to ask myself one simple question...Has the treatment been a success so far? The answer is yes. As far as I know the cancer is all gone. That's only current as of November, but I haven't had any scans since then to disprove that.

There is one last thing I want to talk about here. It's something I ask of you.

You're going to be alright. Please don't say this to me. Unless of course you have seen the future then don't say this to me. I know that you mean well, but you, and I both don't know what the future may bring. Here's the reason why I really don't like to be told this. In the beginning when I was going through the works of tests to see what was going on in my arm I heard this so many times. Everyone was telling me that I didn't have cancer, especially bone cancer, that it was just a muscle strain back then. At first I ignored it, but after being told this so many times I finally gave in and started to actually believe that I was just going to have some benign tumor. Then the mri results came in, and quickly brought me back to reality. There was not one good line of text on that page. I remember coming home from that appointment really resenting all of you for fooling me into believing that all was going to be ok on that test. Telling me this over and over again when I was worrying only made it more painful for me when bad news struck. So again please don't think that you're going to magically make me feel less stressed by telling me that my scans are going to be clear, and I'm going to be alright because you don't know that. I'm very stubborn in my way of thinking, and you're not going to change that. The only thing that both you and I can do is pray, and hope for the best.

I just finished treatment, and this blog post discusses things that aren't too cheerful. I'm sorry if you were expecting me to feel different, but if you've been reading this blog then you should know that this blog is as real as it gets. This is how I feel right now. These fears have always been in my mind since the start, but now that I'm finished they are now much more apparent. I feel like getting this information on here is really necessary because it helps you better understand what I'm going through.

Cycle 6B Complete and Plans Ahead

I wasn't sure what to title this post. I was originally going to title it "Treatment Complete", or "Last week of chemo", or something like that, but I didn't want to jinx anything. I'll discuss more about this soon, but first let's get this last week of treatment out of the way.

I had a lot of fears going into the last week of treatment, and luckily for me it ended up not being the absolute worst like I expected  it to be. I didn't have to drink the Mesna Thank God! But I did receive a very large dosage in my treatment. Like twice as much in previous cycles. I went through a bag and a half of lifesaver mints last week to combat the taste! On Monday I received way too much Mesna, and got really pale, and almost vomited. So he lowered the dosage a little, and I stayed on that amount for the rest of the week. I had average bladder irritation compared to previous cycles. I was really tired throughout the week, but I didn't have any other side effects pop up. We stayed in a hotel Wednesday and Thursday night. This helped make the last two days much easier, as well as saving myself enough energy to attend my brother's Confirmation practice on Friday, and Confirmation on Saturday as his sponsor.

My last day of treatment was the most beautiful day that I had this year in chemo. It was warm, and sunny outside. I really wanted to finish my last week of treatment strong. I wanted to leave the center confident, and happy not hunched over and defeated. And I left exactly like I wanted. The toughest thing about this week was saying goodbye to all of the nurses, and staff at Radnor. I won't be seeing them as much now, but it's not like I won't see them again. When you're with these people several times a month bonds are made, and it's tough leaving. I'll still get to see them when I have my follow up appointments which are actually more frequent than I thought they would be.

Some updates and plans going forward:

My arm: I haven't really mentioned much about my arm on here in a while, and I'm sure you're wondering what's going on there. It's been 60 days since my follow up appointment, and I have seen minimal to no improvement there. The main problems here are that I have been either too tired, receiving treatment, or have some side effect preventing me from performing the exercises;like cystitis or bone pain. I'm still limited to holding just 8 lbs since the bone didn't take, but hopefully I'll find out that it began to take when I have my next appointment, and get to increase the weight. Yesterday I did some stretching, and a little bit of strengthening exercises. My shoulder was tighter than usual, but I haven't done any stretching or anything since before last Monday's treatment so that was expected. The tightness will get better over the next few days. My surgeon honesty didn't expect much to improve over these last 3 months of chemo, but I did. I'm a little disappointed, but at least now I can see more steady improvement since my body won't be getting broken down every two weeks now.

Now that I finished my prescribed chemo, what now?
Here's what's going to happen. I'm going to continue to take my daily meds until bloodwork gets better. I'm going to have a bone scan, and CT scan of my chest in the next two weeks. This will check for any cancer that's still left in my body. If these are both clear then I'm officially finished with treatment. The follow up plan will be as follows:
Year 1: CT every three Months
Year 2: CT every four Months
Years 3,4,5: CT every six Months

After year five we will make a decision how often the follow ups will be. There will only be a bone scan if I complain of symptoms. Like for example if I have some nagging pain that won't go away. Much like the initial diagnosis of this. I only have this initial bone scan, and after that it's on an as-needed basis. I'm not sure how much I like that. I feel like every time I have some pain I'm going to be freaking out and wanting to get checked out. And I know I'm going to have a lot of soreness when I get back to exercising. If this spreads to the lungs I won't have any symptoms, but if it spreads to other bones then I would. That's why I have CT of my lungs regularly.

Sorry for the delay on this post. I've been really tired the past few days, but I did work on this for a while. This is only half of what I put together. I wrote about what the scans mean to me, and it got way too long. I took that whole part out of this post. It deserves a post to itself. I feel that it's really important for me to discuss this topic. Other people going through what I'm going through will benefit knowing what it feels like emotionally to be at this point in my journey. It will also help you out there who personally know me better understand how I am feeling now. That will be posted on Friday

Friday

Beautiful Day

One Scan at a Time. Let's Get It!

One Week to Go

Sorry I haven't updated in a while. I'm in the treatment center right now, and I figured I would get a little update on here. The last two weeks I have been doing a lot of resting, and haven't been up to blogging. On the bright side I did have some friends over last week which was really nice. The only new side effect I had to deal with from my last post other than the increased fatigue was a little bit of thrush. If you're not aware thrush is a painful fungal infection in your mouth, and if not treated quickly can get pretty bad. We caught it pretty early, and the prescribed Nystatin cleared it up in a few days. It was pretty gross looking, and it was shocking to see how well the medication worked for it. 

This week is my last week of treatment as long as my scans are clear. You would think I would be really excited right now, but I have a rough week ahead of me. I think it's going to be hard for me to truly be satisfied until I get that final "clear" at the end. So I don't see much reason to celebrate at the conclusion of this week because at this point it still seems a little premature. The only thing to add is that I was reading other Ewing's sarcoma blogs and some patients receive more than 6 cycles, and some receive less. I wonder why. If that extra cycle will improve my odds of this not coming back, then I'll definitely take more chemo. I'll have to ask about that on Friday.

As always keep me, and all of the other people battling cancer in your prayers.

Cycle 6A Complete

On Thursday I received my last dose of my A cocktail of drugs. My last dosage of Cyclophosphamide, Vincristine, and Doxorubicin(the red devil) that is. I won't be missing these drugs at all. My day of treatment was longer than I expected, and that was because of the Cystitis that I had developed in my last cycle. I received an extra hour of hydration along with an extra half hour of Mesna to protect my bladder. It was a pretty long day, but I got through it. The bladder irritation feels almost better. It's sometimes uncomfortable, but most of the time feels normal. 

Receiving my last dose of "The Red Devil"

The only thing that can get me through the Mesna

I'm not looking forward to my last B week which will be from the 17th-21st. There are some changes to my treatment which will make it my most difficult week yet. There will be two major changes to the week. 

1. The added an hour and a half to each day due to the added Mesna, and hydration. That will increase my time of treatment to around six hours. Add that to the wait time before I begin treatment, and the car rides, and it could amount to 10-12 hour days! It will be a long week. Right now I'm trying to decide between being hospitalized for the week, or staying in a hotel for at least 2 days of the week.  I'm leaning towards the hotel because I want to finish my treatment at Radnor even though it is probably the more difficult choice.

2. More Mesna! To protect my bladder even more I will be receiving an extra dose of Mesna that I will take later each day. I don't know how many times I have said over the course of my treatment how much I hate this drug, but I'm going to say it again. I hate Mesna! It's not even chemo, and it is my most dreaded drug that I receive each day of treatment. Why must it have a side effect that gives you the most awful taste in your mouth. It gives that side effect when administered through IV, but just wait. Guess how I will be taking that extra PM dose of Mesna? I will be drinking that garbage. I asked one of the nurses how bad it is, and she gave me an ugly face, and replied... Mix it with the strongest drink you can think of, and try to not even let it touch your tongue or you'll probably throw up. Great! I'm already receiving triple the dose of Mesna during my treatment compared to what I was receiving, and this extra Mesna is just adding more insult to injury.

Now that I got that all out of the way let's move on to how I'm feeling now. I'd say I'm just a little more tired than I usually am by now, but I attribute that to being a little sick. Everyone in my family has gotten sick, and I'm the last one to catch it surprisingly. It's just a sore throat, but it's annoying especially since the steroids make me so hungry, and it hurts to eat. I'm just taking it easy right now, and getting lots of sleep. I have the chills today, but the last few days I've been really hot. I even looked like I was sunburnt. I'm not hazy at all today which is why I'm writing this now. Today has been better than the last few days since I'm off the steroids. I'm done with those now as well. Last dose was last night, and my last Neulasta shot was on Friday. Seven more Neupogen shots and I'm done with shots. This last cycle is bringing lots of lasts. I won't miss any of this treatment at all, but I am cherishing these lasts. It is the best feeling ever as this is all coming to an end now. I finally saw the light at the end of the tunnel on my trip down to my treatment on Thursday. It took me a long time to find it; longer than I expected in the beginning, but now that I've made it this far there is no way that I can get lost. This whole treatment has gotten progressively more difficult, and I realize that this last week will be my most difficult week. 

I don't plan on turning around into the darkness of the tunnel, and losing the light as I have come way too far to not finish this off on my strongest note yet.