tag:blogger.com,1999:blog-1279471610516360602024-03-19T07:56:30.766-04:00Welcome to StrugglevilleSharing my journey through Cancer and beyond.Benhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-127947161051636060.post-50500899988001266112010-05-07T21:15:00.000-04:002010-05-07T21:15:44.750-04:00What Normal Feels LikeGreetings All,<br />
<br />
So I am over a month past my last chemo treatment and I'd have to say that life is getting back to normal. My hair is slowly coming back in. It's a shade lighter than it was before but not by much. It's also very soft, almost downy. I'm back to doing my chores around the house, back to being able to play with my kids, back to being beaten up at work because people don't feel sorry for me anymore. You know, the usual. It's been great!! I also have been staying up a lot later than I should. I tell my wife that it's because I've had my fill of sleeping for a while. I can get by with just taking naps. That, of course, is not true and its rough getting up for work but it just feels nice to be able to stay up late.<br />
<br />
I'm going to be talking about my experience at my church coming up on Sunday the 16th at 7pm. If you are in the area and are interested let me know and I can give you directions. I'll be leading some songs (something I haven't done in 2 years) and sharing about how thankful I am to have made it through. I feel like there have been so many good things that have happened while I am surrounded by bad things that sometimes I miss my chance to say thank you. So, this time I'm not going to miss it. It is definitely a weird thing for me because I still have a lot of feelings toward God that are not 100% positive. Not because of the cancer, but for other reasons that if you are familiar with the story of the last 8 years you may know. But I am truly grateful that He brought me through this and, to put it bluntly, that I am still here. I don't want this to be all about me though so we are going to have a time for people to share what they have gone through and come out the other side. Also, we'll have a time for people that are still stuck in the middle of whatever they are in. <br />
<br />
It's also a strange position for me to be in because I know what it feels like to sit and listen to someone talk about how they made it through this huge thing and God came through for them and so on, all the while thinking, "Well that's peachy for you but would you be saying how great God is if things didn't work out the way you had hoped." I've been on the other side of wondering what went wrong and why did this have to happen. I know how hard it can be to listen to someone's joy when your pain is still a little too real. So, I'm hoping that if there is anyone in that situation while I share my story that they feel comfortable to give voice to what they are feeling and know that people care about what they are going through.<br />
<br />
Wow, that got a little heavier than I intended. Anywho, the moral of the story is things are going pretty well. I still haven't jumped into my project of losing the weight I gained but, baby steps, right? Sometimes it's good to just enjoy a little bit of normal.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-13090871899199669682010-04-24T13:22:00.000-04:002010-04-24T13:22:11.898-04:00Abnormal My ***Greetings All,<br />
<br />
On Wednesday I called the Urologist to get back the results of the additional tests done on my urine sample. Everything came back completely normal. One more step toward putting everything behind us. So much for my "abnormal" cells. I am counting down the days until my chest finally heals from getting the port out. I'll admit I'm not doing a very good job of not lifting anything over 10 pounds. I can't help it, I got things to do and it mostly involves things over 10 pounds. Whatever, at least I'm not not bleeding profusely.<br />
<br />
Peace,<br />
Ben<br />
<br />
P.S. Jen, my cell crashed and I lost your contact info. Please give me a shout when you get a chance.Benhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com1tag:blogger.com,1999:blog-127947161051636060.post-62134122930683832372010-04-19T22:48:00.002-04:002010-04-19T22:57:41.815-04:00Sometimes You Gotta TrustGreetings All,<br />
<br />
<br />
As I alluded before, the clean scan was certainly not the end of the journey, nor is it the end of Struggleville. A lot has happened in 2 weeks since I last posted and we have had to make some tough decisions.<br />
<br />
The Thursday after I got my results I had a follow up appointment with the Urologist. This was to follow up on the bleeding I had during treatment. There is an extremely comical, yet uncomfortable, and exceptionally visual story about avoiding a Cystoscopy (sending a camera into your bladder) that I will not share here. I've probably said enough already. However, they said they did find some abnormal cells in my urine sample that they sent off for more testing. I asked the urologist what kind of abnormal cells and he said they would check for bladder cancers and other cancers of the urinary track. I asked if that would show up on my PET scan and he said not necessarily. So, this Wednesday I have to call for my results on my "abnormal" cells. To be honest I'm not really worried about the results. I'm sure everything is fine and I'm not surprised going through chemo and all that I would have some abnormal cells.<br />
<br />
The following Monday I had my chest port removed. What a relief!!! I still have a bandage and stitches right now so it's still a little like having it in but I'm glad it is out. Strangely enough I had another interesting story with the port removal. I took the whole day off. I figured being cut open warranted a day free from the stresses of work. Our daughter had a doctor's appointment so I was going to take our son to school. He got dressed, we brushed his teeth, got his coat and shoes on, and we are just about to leave. I bend over to tie my shoes and I feel on drip on my stomach. My first thought is I probably have a little stream of blood coming down from my incision. I happened to be wearing a t-shirt with a long sleeve shirt over that at the time so I took off my long sleeve shirt to survey the damage. Imagine my surprise when my t-shirt literally looked like someone had shot me in the chest. I had soaked a good 2 inch circle in my shirt. At this point I seriously considered just changing my shirt and taking our son to school, but I reconsidered, called my dad to take our son to school, and called the hospital. Their sage advice was to apply direct pressure for 15 minutes, change the bandage, and if I hadn't stopped hemorrhaging by then to call back. By the time I got off the phone with them I had stopped bleeding so I changed the bandage and went on my way. I never did have another incident but it brought a little excitement to my afternoon.<br />
<br />
Finally, the big news of the day. Last Wednesday I had my follow up appointment with my Radiologist. The standard course of treatment for Hodgkin’s is either 12 treatments of chemo and no radiation or 8 chemo treatments and then radiation. I had my 8 treatments and gotten a clean scan so I wanted to ask the radiologist whether radiation was necessary. The problem is this:<br />
<br />
I have a 4%-6% better chance of reoccurrence if I don't do radiation and just do the chemo. However, I also have the chance of developing secondary cancers from the radiation some 10-20 years later. I have read a lot of other people's stories of treatment and it seems more and more that people are not doing radiation, but they are also getting more chemo treatments than I did. I asked the radiologist if the PET came back clean what exactly are we treating? He said a PET scan will only pick up groups of cancer cells that are greater than 5-7 mm large. Random active cancer cells could still exist and not be seen on the PET. With the area that would be treated there is also some risk for lung scarring, heart scarring, and irritation to the esophagus and spine. Did I mention I could get cancer from treating cancer? I thought so. So I did a lot of thinking and a lot of praying by myself and with others. In my mind in came down to this: either way I have to trust. I either trust now that the chemo did its job and the cancer is completely gone or I trust that by going through radiation I won't develop a second cancer later. Both decisions reminded me that I won't feel like things are completely over for a while.<br />
<br />
After a lot of agonizing I have decided not to pursue radiation treatment. I feel like this is the decision I am supposed to make and I am going to trust in the here and now that the cancer is gone and that it is time to start to move on. Things could change tomorrow and I will still know that this was the decision I was supposed to make at this time. It's crazy but I can't remember ever having to make a decision quite like this. I guess I've had a lot of unique experiences in the last 4 months. Experiences that I haven't even begun to see the significance of yet. I am also trusting that as the days pass I will gain a small understanding of why I was meant to go through this and how I'm supposed to use it going forward. <br />
<br />
So my friends, the journey continues and we struggle on. I hope that in whatever struggles you are going through you take some solace in the fact that whatever you face you are not alone. Cancer sucks, and a lot of things we face in life suck. I wish I could remove what sucks but I can't. But if you are looking, between what sucks you find a lot of beauty, friendship, grace, love, and other things worth struggling for. So don't give up, sometimes you just gotta trust that things will get better..........and sooner rather than later.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-32345629290517625752010-04-01T21:36:00.000-04:002010-04-01T21:36:32.503-04:00The Biscuit Can and a Clean ScanGreetings All,<br />
<br />
My wife has this thing about anticipation. It kills her. She can't handle it. It's to the point that I am the official biscuit can opener in our house because she can't take peeling that label off and waiting for the can to pop. She has to leave the room when I do it. So, the anticipation of today was almost too much for her to cope with. To try to lighten the situation I likened it to the biggest biscuit can ever. She continued to look like she was going to hurl and explode at the same time. I love her so much!!<br />
<br />
The wait was worth it because we got some really great news. My PET scan came back completely negative. Not a trace of cancer left!!<br />
<br />
Thank you so much to all of you again who are reading and posting for your thoughts and prayers. They have been heard. My journey is not yet over, but that is another post. I wanted to share the great news with all of you.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com6tag:blogger.com,1999:blog-127947161051636060.post-78692709481652415932010-03-28T20:23:00.001-04:002010-03-28T22:17:04.230-04:00A Terrible LimboGreetings All,<br />
<br />
So sorry again for being so long in between posts. It has been almost 3 weeks since I last wrote and a lot has been happening. <br />
<br />
The big news, of course, is that I may have done my last chemotherapy treatment!! A week ago Thursday was treatment number 8, the last scheduled treatment I have. For the last treatment my Dad came and sat with me and then drove me home. Also, my younger brother came over and kept us company. It was great having them both there to distract me and make conversation. Both my Mom and my Dad spent time with me at treatments and I have to give them a tremendous amount of credit for it. I know having to watch my child in an NICU hooked up to all sorts of tubes is one of the hardest things as a parent. It can't be easy in an environment where everyone is hooked up to tubes and machines to watch your son be one of them, especially knowing they are all cancer patients. <br />
<br />
Speaking of, I have to mention this 67 year old lady I met while in treatment this time. I have had conversations with lots of other patients while I have been there but this was quite humorous. The first part was not funny at all. She was in treatment for Uterine cancer for the second time. We pray for her treatment and for it not to return for sure. But we got to talking because of our hair. I still have quite a bit of mine but there is a lot of scalp showing where there wasn't scalp before. She on the other hand had no hair at all. She then asked if I was from the area and I said not too far away. She then proceeded to give me directions to her house from the hospital. She was a nice enough lady, but I'm not planning on stopping by. But it gets better. An Orthodox Jewish gentleman came in for treatment and sat down across from me, and 2 chairs over from her. She proceeded to ask him, "Are you Amish?". I know I shouldn't have thought it was so funny, I imagine that not everyone has seen an Orthodox Jew in their traditional clothes. The gentleman was very nice about it and just said no he was Jewish. So, seeing someone else she could talk to she inquired, "May I ask you a Jewish question?". I had no idea what "Jewish" question she was going to ask but she started with something nice and light and conversational - "How come you don't believe that Jesus was the Messiah?" Nothing like starting the conversation with the crux of a 2000 year old debate. What followed was an interesting discussion about belief and tradition and it was actually quite fascinating. The lady of course was completely sincere and innocent and I think that's partly why they were able to talk so openly and freely. I just found a lot of humor in it all.<br />
<br />
Anyhow, just thought I'd share a little story before we get back to the task at hand. My last treatment went as usual. The next day I went to work as usual. Saturday and Sunday I slept on and off. I have discovered another smell trigger for my nausea, the Cascade powder we use in the dishwasher smells just enough like the hospital that I have to hold my breath when I fill the dishwasher or that lump starts forming in my throat. I called off again Monday because I was still very tired and my stomach was not in a good place. I was more tired and tired longer the last 2 treatments. This past Thursday I had my PET scan. That made me pretty sick as well. My stomach was still a little touchy even 7 days later, then I had to fast for 5 hours, and then I had to drink a 20 oz. and a half another of contrast. That stuff is mighty tasty let me tell you. You can add berry flavor to poo, it still takes like poo and berries. I get my results back this Thursday, April Fool's Day. Until then, it's a waiting game in a terrible limbo. Keep those prayers and good thoughts coming for a completely clean scan. <br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com5tag:blogger.com,1999:blog-127947161051636060.post-29745319623190565402010-03-09T21:19:00.000-05:002010-03-09T21:19:03.024-05:00A Glimmer of the FinishGreetings All,<br />
<br />
So I have completed my seventh of eight planned chemo treatments. My last treatment, number six, I actually called off work on Monday. That marked the first day I had missed that wasn't a treatment day since Christmas, and the only unplanned day off I've taken in my entire course of treatment. I have definitely felt more tired for more days after. Maybe it's a psychological thing that I know I'm getting toward the end and losing part of my fight. Maybe the treatments compounding on themselves are taking a little bit of a toll.<br />
<br />
The big news is that my oncologist through out a little bone for me before my last round. He has suggested that if my PET scan comes back completely clean then he is open to the possibility of not doing radiation at all. That means that if I'm completely clean, besides the fact that would mean I don't have cancer anymore, then my last treatment would be the last process I would have to go through. I bring this up so that everyone can start praying now. Not that we wouldn't be praying for the cancer to be gone, I know sounds weird. But, man, would it be great to know that 2 weeks from now I may not have to go through anything else.<br />
<br />
Kim always asks what my gut tells me about what is going to happen. This time I really am not sure. I don't want to completely buy in because if it doesn't happen I have to be mentally ready to keep going. That doesn't inspire a lot of confidence in her, which in turn makes her a little discouraged. Mentally I think I'm going to be guarded for a while, probably for the next couple months worth of follow up scans. You always have that little bit of a thought of what if it comes back. It's that same part of the brain that thinks, what if I don't beat this. You know it's there but you don't acknowledge it and you know that you can even take a second to think about it.<br />
<br />
I know I'm rambling so just for the record: I knew from the beginning, I mean really knew, that when they told me I had a mass in my chest I was going to have to go through chemo. I also knew from the start that I would come out the other side clean. It would just be nice for the other side to come sooner than expected.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com5tag:blogger.com,1999:blog-127947161051636060.post-61304687342084309922010-02-25T21:43:00.000-05:002010-02-25T21:43:06.583-05:00The Home StretchGreetings All,<br />
<br />
I apologize I have been remiss in posting lately. I have to say it is easy for days to get away from me at a time. I'm now a week past treatment number 6, and there are only 2 more on the horizon! I am slowly getting back to normal, or what has become normal to me. I still kind of live with my stomach being a little sensitive, not having full strength, and being pretty absent minded (I'd like to blame that on the chemo but I'm not sure that's fair). I have a few thoughts to share with everyone on how things have been going:<br />
<br />
Treatment day is becoming quite a mental battle. I wake up the morning of and usually I don't feel too bad right off the bat. As I start to eat breakfast I start to feel the nausea creeping in. Every sight and smell as soon as I get in the car starts to trigger nausea. In the following days I even had to switch the water bottle I usually use with my wife's because just drinking from the bottle I always use at treatment was starting to get to me. While at the hospital I have a lot of moments where I feel close to losing my cookies. The nurse has asked me a couple times if I would like one of my anti-nausea that also is a "stress reliever". To be honest I haven't taken one of them since I've started treatment and I don't plan on taking one no matter how I feel. I'm not a big fan of drugs in general and habit forming narcotics give me the heebie-jeebies. I have been going to treatment alone because it is best for everyone but I'm thinking for the last 2 I'll be bringing someone along for company and to drive home.<br />
<br />
All the nurses in Oncology have been incredible but I have to give a lot of credit to one nurse in particular whose name is Sue. She has been the one who has taken care of me for 4 out of my 6 treatments and she is the best. It is just not the same when she is not there. I think part of it for her is that she has a son that is close to my age but she has been a definite gift and I owe her a lot of thanks.<br />
<br />
I just can't seem to bring myself to start thinking about the end of treatments. My wife and I have been joking about what we'll do with all this extra time on our hands this summer when I'm finally done with treatment and she's done expressing milk for our daughter (that's another blog, another time, another place). But in the process of things I really don't spend a lot of time actually thinking about being done. I guess it's mostly because I won't believe I'm done until that last PET scan, that last Radiation session, that final appointment when they say it's gone. Until then I can't think about being done because I have to still face the possibility that 8 treatments won't be the end. If I came to 8 thinking I'm done and it turns out I'm not that would be a bunch of 4 letter words. I'm trusting that won't happen but I keep it in the back of my mind. <br />
<br />
I'll close like I usually do, thanking all of you for your thoughts and prayers, and your comments. As we head into, hopefully, the last 5 weeks of Chemo I can't say enough about how much everyone's spoken and unspoken support means to me and my family.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-33641048490133002252010-02-07T11:13:00.000-05:002010-02-07T11:13:31.125-05:00Making Progress!Greetings All,<br />
<br />
Well treatment number 5 has come and gone. I'm down to 3 left, at least I'm pretty sure we have 3 left. The most important news of the week is that I got the results of my chest CT back. The tumor has shrunk from 4.4 cm x 6.5 cm to 3.5 cm x 1.1 cm!!<br />
<br />
My oncologist was very happy with the progress so I can't complain. I'm not exactly a math wizard but by my calculations that means the tumor has shrunk by more than half the size it was originally. It does give you a little mental boost but treatments are still tough. It's little things like today being Super Bowl Sunday, a day I normally look forward to good football and a lot of eating but nothing sounds good to my stomach today. Overall I'm feeling better on day 3 than I normally have been feeling. Day 3 usually entails me sleeping all day and feeling pretty down but I'm not doing so bad mentally and I'm surprisingly concscious.<br />
<br />
Not much else to report. I wanted to share the good news from the scan and as an added bonus I finally uploaded a haircut picture for all to enjoy. I'm thinking the mohawk works!!<br />
<br />
Peace,<br />
Ben<br />
<div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmLtvAr3IgseW9UxoqidGyzKMvOwEn4RdWm0_vnBCOeZJ7UQjx9Z6aNVbAiGYdU95ZVaRmGAoBGzeA3l9GvRzkd-rhr-_bkt7SqRWdpkOiy32AWopcxJJXSgvd8ktgt_j9FMR7Q3p-tv8Z/s1600-h/093.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmLtvAr3IgseW9UxoqidGyzKMvOwEn4RdWm0_vnBCOeZJ7UQjx9Z6aNVbAiGYdU95ZVaRmGAoBGzeA3l9GvRzkd-rhr-_bkt7SqRWdpkOiy32AWopcxJJXSgvd8ktgt_j9FMR7Q3p-tv8Z/s320/093.JPG" /></a></div>Benhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com5tag:blogger.com,1999:blog-127947161051636060.post-20440520248164797322010-01-27T00:16:00.000-05:002010-01-27T00:16:01.909-05:00Check Please!Greetings All,<br />
<br />
That's how I've kind of felt this week. Check Please! This week the frustration of it all set in for a few days. Another weekend of sleeping through most of it and my stomach upside down and I started to get a little discouraged. I know I'm now half-way through my treatments, and that the time has gone by fairly quickly. But for some reason 4 more treatments seems an awful lot to me right now. It's strange because soon I'll be done with another treatment and 3 doesn't seem like a lot, but 4 does. I've tried not to give it any thought that I could have to do more if the cancer is not responding, but we're not even going to go to that place.<br />
<br />
I did meet with the Radiologist before my last treatment to discuss my options after Chemo. He was really good about setting out the short and long term affects of Radiation. One of my major concerns is that there are chances of secondary cancers later on from doing Radiation and I have read blogs of other people with Hodgkin's that have not done Radiation so I wanted the scoop. <br />
<br />
The Radiologist pointed out that the percentages of secondary cancers are based on treatment methods from a few years ago when they treated the entire upper body. These days they are much more focused and with my cancer being confined to just the tumor site that the amount of other tissue being touched by Radiation would be minimal. Also, they use lower doses for Hodgkin's than for other cancers. That combined with the fact that if I don't Radiate I would be looking at a minimum of 4 additional treatments of Chemo and I think I'm going to choose Radiation.<br />
<br />
So, after Chemo they would do another PET scan to make sure the cancer is dead and then I would go on to Radiation. The brutal thing about Radiation will be it's Monday-Friday for 4 weeks. But, Lord willing, that will be the end of things.<br />
<br />
Finally, I have my chest scan set for this coming Monday so we'll get to see if the tumor has reduced in size and we're making progress. Treatment number 5 is on the horizon and then we'll be down to 3 (hopefully). Thanks again to everyone who comments or don't and are sending their good thoughts and prayers. I know that they have been helping, I wouldn't have gotten this far, this well, without the strength that you all have been praying over me and my family.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-28843531009699075572010-01-18T23:32:00.000-05:002010-01-18T23:32:08.972-05:00The Halfway PointGreetings All,<br />
<br />
So Wednesday will be my fourth treatment and I have to say that in a way it seems to be going by rather quickly. After Wednesday my oncologist plans on scheduling a chest CT to see if we are making progress. I have to believe that the tumor is smaller simply for the fact that since my very first treatment I haven't coughed once. After almost 2 months of coughing before being diagnosed it just vanished as soon as I started Chemo.<br />
<br />
Also Wednesday I meet with the Radiologist for the first time. It is just a meet and greet type deal. My wife has been reading a lot of other blogs from men who have gone through treatment for Hodgkin's and a lot of them never did Radiation. I know there can be some secondary complications from Radiation, including other cancers, but I hadn't really considered not Radiating. I guess it's something I need to do more homework on and be prepared to ask the medical team some questions. I know the tough part would be having to drive to the hospital every day because Radiation would be at least 5 times a week.<br />
<br />
It's also been encouraging to read some other people's story because I don't know if my experience is typical or not. Here's some of the things I am beginning to realize about my experience with cancer:<br />
1. I am most likely not going to lose my hair. The hair on my head has definitely thinned to the point that if you know me you can tell but I am by no means going bald. <br />
2. I have actually gained a couple pounds so far through treatment. In reading some other blogs there's been some others that have had the same issue. I think part of it is the steroid I get with each treatment, but that's only an excuse for the first 48 hours. After that having something small and plain in my stomach constantly helps to manage the nausea better. So, I am really not thinking about food until after noon for about the first 5 days after treatment, but after that I eat small things almost every hour and a half for the rest of the day.<br />
3. I have 3 different types of medication to deal with nausea and I have never thrown up (and I don't plan to). But for about 5 days after I have what I call "Airport Stomach". See whenever my wife and I use to go on vacation we would always get the cheap flights at like 6am so we had to be up some crazy hour. That early I could never eat but I felt hungry at the same time. Almost any food sounded terrible and my gag reflex sat at my Adam's Apple all the time. That's how I feel after treatment.<br />
4. It is hard for us as human beings to maintain compassion for any length of time. Now, DO NOT get me wrong. I know I have a ton of people pulling for me, praying for me, and loving me and my family during this time. I so much appreciate every one of you who has posted comments it really means a lot. However, for a good number of people I am in contact with every day it has almost gotten to the point where, to them, I don't look sick and I don't look like I'm dying so there must not be anything wrong. I don't blame them, and I know I'm just as guilty as they are in doing this to other people. Just look at any major tragedy that happens to the world, the devastation in Haiti right now is a perfect example. For a few weeks, maybe a month, it will be the leading story every day and all sorts of charities will pop up everywhere. But after that we will start going about our everyday lives again. We will forget that there are still people hurting and dying. We will forget that there are hundreds of volunteers still there fighting every day to be the only hope the people of Haiti have. I'll be honest, I'll be one of those people, too. It is just hard for us, being human, to maintain that's all. Again, I know there are a lot of you out there that are not like that at all, thank God for all of you because you are the exception to the rule.<br />
5. I start to dread treatment days starting earlier and earlier. When I started it was the day before, now it's 2 days before. It does get tough getting only a week of feeling somewhat normal before you go back again. It's hard knowing how I'm going to feel and, worse yet, knowing I'm not going to be there for my family for the next few days. I cannot say enough again how awesome my wife is. She is amazing. I know she needs her husband to be there and laugh and be silly. I know my son wants to have his daddy to wrestle on the floor with and run around and be crazy. I know I want to be able to feed and hold my daughter for an hour and have her laugh and smile at me. But mostly I just sleep.<br />
<br />
So that's how treatment is going so far. I'm looking forward to positive news from my CT scan in a few weeks and heading down the homestretch of this challenge. Thank you again for all your thoughts and prayers, I know they are working.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-72498173157724481802010-01-10T09:53:00.000-05:002010-01-10T09:53:47.793-05:00Port Placements and Birthday WishesGreetings All,<br />
<br />
I first want to say a very Happy Birthday to my lovely wife. Today she is ........ years old. With my treatments she deserves more than I am giving her today and that's not right, but a lot about treatment is not right.<br />
<br />
On Wednesday I had treatment #3 and had a port put in before the treatment. The process was pretty simple, lay on a table and let them slide a cyborg-like device under my skin. Piece of cake. They make a very small incision at the base of my neck to slide a tube into one of my blood vessels. Then they make another cut above my right breast and put the port in and connect the two together. Now I have a shaved chest and two large bandaged areas that I have to keep dry for 2 weeks. It's a pain to tape plastic wrap over it to shower, but not showering is not really an option. So now they can just put the IV connection right into the port for the rest of my treatments.<br />
<br />
I managed to go to work both Thursday and Friday. I am feeling some pressure to not miss a lot of days going forward, which makes me feel a little angry but when it comes down to it my employer has really been there and supported me more than most employers would. To be honest, I think it might help me to try and push myself a little. It keeps my mind off how I'm feeling and that's a good thing. Yesterday, however, I kind of crashed and spent most of the day napping. I am feeling a little better this morning, not as tired, but my stomach is still doing loops and probably will for most of today. But I am going to get up and shower and leave the house today in an effort to be more human. <br />
<br />
Sorry for rambling on, I have no coherent thoughts today. I hope all of you are well and it is at least warmer than 3 degrees where some of you are (that was the actual temp when I woke up this morning).<br />
<br />
Happy Birthday my love,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-10015791983225675042010-01-02T22:18:00.000-05:002010-01-02T22:18:05.303-05:00The Best Holidays in YearsGreetings,<br />
<br />
I hope that everyone reading had a great and safe Christmas and New Year. It's been several days since my last post and we have a lot of ground to cover but I have to say that the past week and a bit has been a wonderful time spent with friends and family.<br />
<br />
As I mentioned in my last post I had treatment the 23rd. For the most part I felt great through Christmas Eve and Christmas Day which allowed me to fully enjoy the excitement and joy of having kids at Christmas and having so much family around. We celebrate Christmas Eve with my wife's family, and this year we had my brother-in-law with us from Arizona which was awesome. This began the present gauntlet for our son Gabe. I swear each year we don't spend that much and are overwhelmed by the shear volume of "stuff" he gets each year. Christmas Day was spent with my family and again it was just an amazing time and I felt good. <br />
<br />
The next 2 days were about like last time. I was extremely tired, my mouth was sore but not like last time. I felt more nauseous than last time but I was never sick. I took a lot more of my medicine than round 1. After Christmas Day food really did not sound good until later in the day. Around noon or 1pm I would feel like I wanted to eat something. Plain baked potatoes and a Frosty to make my mouth feel better have become a staple in the bad days.<br />
<br />
About Sunday the 27th I started to shed. My hair is slowly starting to fall out. It's not like I had a lot of bald patches starting, or if I shook my head hair would just start falling out. It was more like if I ran my hand through my hair I would get a fistful. Since it was starting to get all over the house I had my head "buzzed" on Tuesday the 29th (thanks Liz your the best). I think when the motivation strikes me I'll post some before and after pics. With it short you can tell it's thinning, and I leave a total mess in the shower, but still no bald spots.<br />
<br />
On Monday I started to experience some pretty bad side effects from the shot they gave me the day after treatment. Because of my low WBC counts I received a shot of Neulasta, which stimulates the body to produce more White Blood Cells. The side effects are usually joint and muscle aches similar to flu-like symptoms. Starting Monday I was in A LOT of pain. Every joint hurt from my hips down, to the point where it was difficult to walk. To make matters worse the pain spread to my lower back and by that evening I was not able to sleep. Finally about 1am I came downstairs, took some Tylenol, and tried to go find a comfortable position to close my eyes for awhile. I must have fallen asleep at some point because about 4am I woke up with a crazy case of night sweats and the pain was gone. Weird, huh? Fortunately I managed the pain pretty well the next day with Tylenol every 4 hours, and by Wednesday it was mostly gone. Since then I've been back to normal.<br />
<br />
We had our best friends visit from Texas before New Years and that was another amazing couple of days. The moved out of state a few months ago and it was so good to see them. Then my older brother and his family came into town for New Years. We spent New Years with my parents, my older brother's family (he and his wife have 3 kids), and my younger brother and his fiancee. Surprisingly we all made it to midnight (except Gabe and Ellie), even me!<br />
<br />
So, Christmas and New Years were probably the best I've had in years. Being able to see everyone and be surrounded by their love and support. To be able to laugh a ton and watch the joy on our kids' faces for Christmas has been incredible. If there has been a downside at all is that it did make the time fly and I can't believe that treatment #3 is Wednesday already. I feel like I was just there! I am also visiting the urologist on Monday just to make sure there are no other complications, though it seems like the bathroom issues have finally gone away. I hope everyone had a chance to truly enjoy something about the holidays this year. Who knows what 2010 has in store for us all.<br />
<br />
Peace, <br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com3tag:blogger.com,1999:blog-127947161051636060.post-11337744216318234042009-12-24T10:31:00.001-05:002009-12-24T10:31:39.201-05:00The 2nd Round GlitchGreetings All,<br />
<br />
So yesterday I had my second round of Chemo. It almost didn't happen and the results are leaving me wondering if I'm going to have some problems staying on my 2 week schedule in the future. Before each round of Chemo they take a blood sample to check my blood counts. All my counts came back to normal ranges except for my White Blood Cell count. The normal range for WBCs is 4.0 - 10.0 thousands per mcL. My WBCs were 1.5. That's low but they said they can still do treatment at that level. The problem came in a subclass of the WBCs called nuetrophils, I guess those are the guys that help to fight off infection. Normal nuetrophil levels are 1.7-7.6 (thousands). My nuetrophil level was 300. Yeah, 300. <br />
<br />
When the nurse came in she said with those kind of levels they would probably postpone treatment. At these levels I am extremely susceptible to infection, and may possibly explain why things with going to the bathroom have not cleared up like they should. I am still having some pain and a few drops of blood reappeared yesterday. I am also having some discomfort in the area of my left kidney. I have no idea whether these symptoms are related to treatment or if I am just displaying another talent of my of compounding existing problems and working on a kidney stone. I guess given the choice between kidney stone and kidney damage from the Chemo I choose stone but I'm hoping it's neither.<br />
<br />
Anyway, back to the dangerously low WBC. Kim and I had started to think this wasn't going to happen and I might catch a break and feel good for Christmas after all. I was a little disappointed because you prepare yourself for these things and I don't want to keep dragging things out but I wouldn't have minded being 100% for Christmas. However, after talking to 2 doctors they determined that I wasn't showing any signs of fever, I was young, and feeling relatively good so they decided to go on with the treatment. Because of the low WBC levels I have to go back today and get a shot to boost my bone marrow to produce more white blood cells. Of course with everything there's some study that shows that it reacts with one of the drugs in my Chemo cocktail and that it can cause damage to the lungs, which is not cool I'm still kind of using those. But from what I've read online lots of people get this shot so it's just one more trip to the hospital. <br />
<br />
I'm definitely more tired than last time already. I was looking pretty pale with dark circles under my eyes yesterday but after a long nights sleep I'm looking better (for me anyway). Still no sign of any hair starting to fall out which is a problem in a way because I haven't had a hair cut in weeks and I was hoping to save on a trip to the barber shop. My scalp is sensitive and we just took poisoning number two so it shouldn't take long.<br />
<br />
On this Christmas Eve I again want to thank you for all your support, love, and prayers you've sent our way. I want to wish all of you a very Merry Christmas. It's times like this that make me cherish the excitement on my son's face, the inexplicable joy of my daughter's smile, the warmth of people's concern for me, the unending support of my parents and family, the undying devotion of my wife, and the gift of a small child born in a manger that can save us all.<br />
<br />
Merry Christmas Everyone,<br />
Ben<br />
<br />
"Earth has no sorrow heaven can't heal"<br />
-Vigilantes of LoveBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-24182919791017793972009-12-16T20:02:00.003-05:002009-12-16T20:08:57.509-05:00The Shine is OffGreetings All,<br />
<br />
I apologize for not being in contact the last couple days. I have been remiss in documenting parts of the journey. Unfortunately it is not because I've been lazy, which is usually the case. Lately I have had an acute case of the "I can't keep my eyes open".<br />
<br />
As I mentioned in my last post, the actual treatment went very well and I felt good the rest of that day and mostly into the next. Friday I was tired but for the most part felt OK. Saturday through today proved to be a struggle. They were right about the fatigue, it is omnipresent. It' kind of like having Mono only you sometimes have the aches more associated with the flu. That is slowly getting better, I feel a little more energetic each day now. According to the treatments my blood platelets, white cell, and red cell counts should all be the lowest tomorrow so to have a little more energy now is a good sign. <br />
<br />
So three things started to happen on Saturday, and I apologize if I make anyone uncomfortable here. The first thing is I started to exhibit signs of a urinary tract infection, that's as much detail as I'll offer on that. So it's been rather uncomfortable but the antibiotics are finally doing their job. The second is my arm where they put the IV in started to get very sore and swollen around the wrist. This led me to the decision to get a port put in before the next treatment. A port is a device that is installed either in your arm or chest and it stays just under the skin for the duration of treatment. It has a tube that stays in your vein and they can hook up the IV to the access part near the skin. It is much easier on the veins, and I'd kind of like to keep mine healthy for the rest of my life. The last thing that developed was my mouth and tongue became extremely raw and sensitive. It was almost like I was going to develop sores but they never came. This made it very difficult to chew and made eating, well, not very appetizing. I was told to swish with warm water with a 1/2 teaspoon of salt and baking soda to get rid of the food particles that were agitating my mouth after every time I ate. It actually wasn't as bad as it sounds and it did make my mouth feel better. All of these, except for the infection, are common side effects and I'm happy to report that they all are getting better.<br />
<br />
I've been able to go to work every day this week, which is good. I had let people at work know of my condition at one of our sales meetings last week and asked that, while I appreciate their concern, it would really help me if they didn't ask how I was doing all the time. For the most part it helps to do work while I'm at work, it keeps my mind off things and makes the day go by faster. With the fatigue it makes me pretty worthless by the time I get home. My wife has been amazing and we have good help from family near us.<br />
<br />
One thing the nurse told me definitely is becoming more clear. She told us at our first session that I'll come to dread my next appointment. It's true. It's right about the time that I will probably feel normal again that I'll have to go back. That makes the next 4 months seem like a long time. On the other hand, I'm already a week away from my next treatment and the holidays will fly by. Now that I've gotten a taste of what we are in for I ask that you continue to pray not just for me but for my wife and kids. I need to have the strength to be there for them as much as I can and my wife is so amazing taking care of everything right now.<br />
<br />
Peace to all of you,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com6tag:blogger.com,1999:blog-127947161051636060.post-34720205022983033402009-12-10T21:02:00.000-05:002009-12-10T21:02:28.759-05:00The Chemo VirginGreetings All,<br />
<br />
First of all, let me say right of the bat that I am feeling good after my first treatment. As of now, no nausea or any other bad side effect.<br />
<br />
With that said, today I had my first Chemotherapy treatment. We arrived about 10 minutes early for my 1:30 appointment but didn't get called back to the treatment area unit about 2pm. The weather here the last 2 days has been challenging with crazy high winds and snow so apparently a lot of the early appointments showed up late. So that gave me more time to be nervous!! Once I was called back, though, I really wasn't nervous at all. The treatment clinic is just down the hall from my Oncologist in the hospital. They have a huge area with some private rooms, some curtained off rooms, and then a large common area with recliners that probably seats about 20 (so hurry up, and bring your juke box money). Sorry, it just popped into my head when I wrote that and thought I'd get it stuck in yours. There's also a few restrooms and a small kitchen in which they have coffee, soda, water, and some snacks and treats other patients bring in. It's actually a very cool, pretty calm, and upbeat atmosphere.<br />
<br />
The first half hour they put my IV in, and then gave me an anti-nausea drug and a steroid through the IV. Then they started on the actual Chemo drugs. I have a 4 drug cocktail and they are given 1 at a time. 2 of the drugs take about 15 minutes each, 1 drug takes about a half hour, and the last takes about an hour. So all in all treatments can take about 2-3 hours for me. This one was a little bit longer than 3 hours because of it being my first time there was more prep and what not. All the nurses I met, and especially the one that attended to me today, are fantastic. She gave me just a ton of information about everything she was doing, the drugs, some hints and tips, and besides all that she just was very warm, friendly, and caring. I would think you have to have a certain disposition anyway to work in Oncology and treat cancer patients all day. I know there are a lot of jobs like that and they deserve a lot more recognition than they get. <br />
<br />
3 of the drugs are just like having an IV drip. You don't feel anything different at all. One of the things the nurses keep checking is that the IV stays firmly in the vein and that the vein stays open because almost all these Chemo drugs could cause serious permanent tissue damage if they get outside the vein into the surrounding tissue. Unfortunately, the drug that takes an hour does not feel like a normal IV. It causes vein irritation and soreness. When it goes in it burns a little but it also makes my whole forearm feel like the muscles are about to cramp up, but they never do. It's dull and constant pain until it's done. It's not overwhelming and definitely bearable but uncomfortable. <br />
<br />
The only real side effects I'm having at the moment are a little bit of tiredness and I feel just a little shaky all over. The shakiness is most likely from the steroid, I can still feel that my heart rate is up a little. The steroid should keep me feeling pretty normal for the first 48 hours then I just have to watch for fatigue and if I start to feel nauseous. If I don't have any sort of set backs, I'd say today was a very positive day. I'm sure I'll have my rough times but everyone at the clinic strives to make sure the nausea stays away, and that was my biggest concern.<br />
<br />
So, one down, seven more to go. Thanks everyone for the prayers and positive thoughts, I really appreciate all of you. I will of course continue to post how I'm feeling until my next treatment in 2 weeks.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com3tag:blogger.com,1999:blog-127947161051636060.post-35583124672975627342009-12-02T18:03:00.000-05:002009-12-02T18:03:17.993-05:00The Way Forward(Please Ford don't sue me I stole your slogan)<br />
<br />
Greetings All,<br />
<br />
Today I had my follow up visit with the Oncologist to get the results of my bone marrow biopsy and my PET scan. I am happy to report that the biopsy came back normal and the PET scan showed no further cancerous areas. This means that I am officially in Stage 1A. Stage 1A is basically that I have a cancerous tumor and nothing else and that I exhibit no other symptoms like night sweats, rapid weight loss, etc. The bottom line is that we caught it early. Thank God for Mono, and I mean that literally. With all the tests behind me I can finally start treatment.<br />
<br />
I had a chance to go to a Chemo informational class at the hospital but it only meets on Thursday and they couldn't fit me in to tomorrow's class. If I waited until next Thursday then I'm losing another week before I start. I decided to forego the class, at this point I just want to get started.<br />
<br />
My first Chemo treatment will start next Thursday the 10th. It was originally scheduled for the 9th but the office called and said they were booked. After that I will go every other Wednesday for Chemo for 4 months, 8 treatments in all. After that I'll go through another PET scan, if that is clean then I'll do a round of radiation to make sure the tumor is completely eliminated. If the PET scan is not clean I'll do another 2 months of Chemo and then radiation. The Oncologist says that with this course of treatment there's about a 90% cure rate. It's amazing to me that I have a 90% chance of getting rid of this and it never coming back again. That's the kind of stuff that makes you want so badly to find the trick for all these other types of cancer. <br />
<br />
I was also given 3 prescriptions, 2 for nausea I can take at home once treatment starts and 1 that apparently helps to prevent Gout. I was told that once Chemo starts cancer cells can die rapidly and when they do they release acid into the body that can cause Gout. So I take this drug for the first 2 weeks of treatment to prevent it, which sounds like an entirely good idea to me. The doc says that side effects for the most part will be nausea and fatigue. The fatigue thing I'm not worried about, we have 2 kids, I have chronic fatigue. It's a way of life. The nausea he says is pretty manageable for the most part and I plan right now on only missing work for the day of Chemo. I'm feeling a little nervous about actually starting treatment but I'm very relieved that we can start moving forward. <br />
<br />
Thanks again all of you who read and have been encouraging me with comments, emails, prayers, positive thoughts, and all the above. Now the real fun can finally begin.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com8tag:blogger.com,1999:blog-127947161051636060.post-30443230509144931992009-11-21T21:41:00.000-05:002009-11-21T21:41:42.975-05:00The BatterySo Thursday the 19th I went through a battery of tests at the hospital so that they can properly determine what stage I'm in and therefore officially come up with a treatment plan. By battery of tests I mean 3, and 2 of those I got to lay down for, it's a rough life. It was a long day for sure, though, I was there from 9am to almost 6pm. I find it interesting that no matter what you're at the hospital for, patient or support, just being there makes you really tired. But as we say, "Whatever doesn't kill you....", just seeing if you've been paying attention.<br />
<br />
The first test was a bone marrow biopsy. I now have the utmost respect for anyone who has ever donated bone marrow. The test consists of taking a bone chip and then some marrow to biopsy. They take the sample from the "back part" of the pelvic bone so I had to lay on my stomach, which was good because then I couldn't see what was happening. They use local anesthesia to numb the area and then take the sample. It was brief, less then 10 minutes, but pretty painful anyway. I kept getting this mental picture of my house growing up where we had a huge tool bench in the basement. We had this old manual drill that had a ball at the top that you held in the ball of one hand and then kind of bowed out like a saw as a handle that you turned with the other hand to make the drill bit rotate. This is what I kept envisioning was happening "behind" me. Towards the end I started to get those sweats you get when something bad digestively is about to happen, but I made it through. The kicker was the shooting pains down my left leg when he took the 2 marrow samples.<br />
<br />
After that was an echocardiogram. All I had to do was lay on my side, my kind of test.<br />
<br />
After that was a PET scan. With a PET scan they inject you with a radioactive sugar. Cancer cells are highly active so they use sugar faster than normal cells so cancer cells show up very bright on the scan. This is how they see if the cancer has spread to other places in the body. After they injected the sugar I had to sit in an isolation booth for about 45 minutes before the actual scan. During this time I had to sip a lovely Barium shake with a tasty berry flavor. It was like a Carnation Instant Breakfast gone horribly wrong. The actual scan consisted of, again, laying on a table for about 20 minutes and then I was done. <br />
<br />
I won't have any results until December 2nd and I'm looking forward to having an actual plan of attack. Again I want to say I really value all of the encouraging comments I have received. I wish all of you a very happy and safe Thanksgiving if I don't talk to you before that.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-3055323384348921862009-11-17T22:43:00.000-05:002009-11-17T22:43:07.220-05:00The ClubWhile waiting for my appointment on Thursday I thought I might share a tiny nugget of a insight, for what that's worth, into our common human experience. I know, sounds deep, don't get your expectations up to high. <br />
<br />
In our short time together my wife and I have joined a lot of clubs. These are special clubs. The kind of clubs that until you join, you have no idea the size of the membership. The kind of clubs that don't really send invitations but you're welcomed in with open arms. The kind of clubs that are formed not by religious affiliation, political party, social status, or any particular cause. The kind of clubs that bring complete strangers together in a bond that most times needs no words, clubs based on one of our basic human experiences - true empathy in the face of pain.<br />
<br />
My wife and I joined the infertility club a few years into our marriage. Shortly after that we joined the miscarriage club. This was followed by the incredible privilege (and I truly mean privilege with 200% sincerity) of joining the adoption club. When we were given the gift of a biological child we joined the parents of a special needs child club. <br />
<br />
By calling all of these experiences a club I certainly don't mean to minimize any of these things in any way. The common thread in all these things truly has been the chance to experience the sadness that life can bring but also the love and support of those closest to us, and those we hardly even know who somehow know exactly how we feel. Pain and sadness are a part of life, whether we like it or not it reshapes us. We have a saying in our household, "Whatever doesn't kill you makes you tired.." In the midst of our struggle we realize all the other people around us that have gone through the same situations. We are allowed the chance to reach out to other "new members" because we've been there before. The compassion and empathy that my wife and I have given and been given in all these trials has probably only just begun to be realized. Which brings us to our most recent enrollment. <br />
<br />
I guess when it all comes down to it I see my membership into the cancer club the same way I see all our other memberships. It is part of who I am and who I will always be. Even after the cancer is gone, I will always have been a cancer patient. I will have another experience that I can point to and say, "See, we got through that, too". So, I don't know if any of you who read this are going through something, maybe you've got your own club you're in and you don't think you have any other members. Can I be so bold as to say, chances are there are more members than you think. While it may suck to be a member of some clubs, my hope for all of us is that we use our membership to be there for each other in whatever way we can. <br />
<br />
Anywho, that's my random thoughts as I sit here. I'll post again after Thursday's appointments, even though I won't have any results until the 2nd.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-45739824589623192652009-11-13T22:34:00.000-05:002009-11-13T22:34:29.612-05:00The OncologistGreetings All,<br />
<br />
On Wednesday the 11th I had my first appointment with the Cancer Oncologist. I had written a list of all the questions I had, making my wife (aka Queen of Lists) very proud. I was feeling pretty prepared and somewhat looking forward to what he had to say because I know I'll be much better knowing "the plan".<br />
<br />
The oncologist was very good at sitting down and explaining as much as we wanted to know. He answered most of my questions before I even had a chance to ask. I felt like he was taking his time and he had been doing this for a while so I'm comfortable with following through with my treatment plan with him and at this hospital, which was also important to me.<br />
<br />
So, to the important part, "the plan". He went over my CT scan and explained the different stages of Hodgkins and how they would determine what stage I'm in. Stage 1 is if the tumor is the only cancer present. Stage 2 is if in addition to the tumor any cancer has spread to my lymph nodes or any other area in my chest. Stage 3 is if it has spread from my chest to any other area below the diaphragm. Stage 4 is if it has entered my bone marrow. To determine the staging I am going to have a bone marrow sample analyzed and a PET scan, both next Thursday the 19th. A PET scan is a lot like a CT scan only the stuff they make you drink highlights only cancer cells so when they scan the whole body they can spot any other places it might have spread. I also have an EKG scheduled for next Thursday because one of the side effects of the Chemo drugs the may use can be heart damage and the want to test ahead of time.<br />
<br />
If my Hodgkins is either stage 1 or 2, which right now seems likely because there did not seem to be any swelling in any of my lymph nodes that they can check by feel, then I would go through a 4-6 month regimen of Chemo with Radiation at the end. They would use a 4 drug combination called ABVD, the initials stand for the first letter of each of the drugs involved, every 2 weeks by IV. So if 4 months kills it all I'll have 8 total Chemo treatments. 2 months in they would do another PET scan to see if the Chemo is doing its job. As the oncologist put it, the success rate with this treatment has been so high that the treatment plan really hasn't changed that much in years. It's the old if it ain't broke don't fix it deal. If it is stage 3 or 4 the treatment plan would change and he didn't really get into specifics of what that would look like, so we'll try to avoid 3 or 4.<br />
<br />
I was told that 2-3 weeks after my first Chemo treatment that my hair would fall out. Oddly enough this seems to be the #1 question from people who know my situation right now. My boss seems to think that this is some traumatic event for me and that I'm extremely vain about my hair. Honestly, I could care less. I've been hoping to get rid of this hair on my back for years (OOO, that's too much information). I don't mind not having hair but what's a little weird to think about? No eyebrows, then I think I'll look a little like an alien. Anyway, 4-6 weeks after my last treatment he said my hair would start growing back so no big deal. Speaking of too much information, we were also given some information on options for our reproductive future. Chemo kills cells.....you figure it out this is a family post!<br />
<br />
After my tests next Thursday I meet again with my oncologist December 2nd. At that point they will be able to stage me and really put together the official treatment plan and when I'll start. I still don't feel like a cancer patient. I don't think I will until I have my first Chemo session. I really appreciate the kind words and encouragement I've received in posts and other ways so far. It's meaningful to me. So here's to only Stage 1 or 2!!<br />
<br />
Peace, <br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com7tag:blogger.com,1999:blog-127947161051636060.post-90172715420157307982009-11-09T22:20:00.000-05:002009-11-09T22:20:59.392-05:00The Back StoryI am horrible with time. Pretty much everything to do with time. Being on time, telling time, any sort of time relationship. My wife can tell you to the day when something happened 4 years ago, I can't be sure if something happened yesterday or 3 weeks ago. All this to say I'm going to attempt to go back and explain how we got here.<br />
<br />
I had a persistent cough for the better part of October. It just wasn't getting any better. It got to the point that my loving wife threatened that one of us was not going to make it unless one of us went to the doctor. So when the chills and sweats and body aches came I broke down and went to the doctor (a big step for us guys, I know). So Wednesday October 14th I went to my family doctor and he said I had the bug of the year and gave me antibiotics. By the following Tuesday the 20th I wasn't any better and so I called my doctor once again. He wrote me a prescription for a new and more powerful antibiotic. The next day I couldn't make it through work. I came home about noon and slept until 8:30......am......Thursday. About 10 or so Thursday my wife and I decided that maybe I should go to the ER to make sure I don't have regular flu, swine flu, pneumonia, etc. In the ER they tested for both strains of flu, pneumonia, and took some blood. I told the ER doctor that it felt a lot like Mono which I had before in high school. She said you can't get Mono twice (Liar) and they ordered a chest X-ray because of the cough. Then they ordered a CT scan of my chest, didn't really think much of it at the time, just standard procedure. After another half hour or so they came by and told me that on the X-ray and the CT scan they discovered a mass in my lung (Liar) and that I would need to follow up with my family doctor to schedule a biopsy. I'm sorry you found a what? And you need me to do what?<br />
<br />
Honestly the first thing I thought of is how in the world am I going to tell my wife without her freaking out. Do what you want to me or with me but do not make my wife suffer. Allow me to let the ladies in on a little secret: Nothing is more devastating to a man than being helpless when their wife is in pain. I keep thinking in our storied journey together that I have learned to not accept this feeling but live with it, and I'm still wrong every time.<br />
<br />
Anyhow, that Friday the 23rd of October I met with my family doctor and I asked him to draw some more blood to test my Iron levels and test for Mono because I was still exhausted. Turns out I tested positive for Mono and the mass was not in my lung at all but growing in my chest cavity. The official term is an anterior mediastinal mass. It's a pretty good size, too, about 3 inches around. It's bunched all in there next to my wind pipe, my pulmonary artery, and some other things I'm pretty sure are fairly important but it had never pushed on, impeded, or cut off any of those things so it was never detected. My doctor set me up with a Thoracic specialist on Monday the 26th. From there the Thoracic specialist set up my biopsy on the 2nd of November. And now we are here.<br />
<br />
I have my first appointment with the Oncologist this Wednesday. This will be our first chance to ask all the specifics about what's going to happen and when. Through all of this it's easy to miss the fact that if I hadn't gone to the ER that day, if I hadn't had the crazy cough, if I hadn't gotten Mono twice, this thing would still be growing inside me and no one would be the wiser. Goes beyond coincidence, don't you think?<br />
<br />
Peace, <br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com4tag:blogger.com,1999:blog-127947161051636060.post-72616642764147838552009-11-08T18:30:00.000-05:002009-11-08T18:30:15.040-05:00Welcome...I've never much been the guy who would start a blog. However, I thought this might be the best way overall to share with loved ones all over the journey through what has happened, and is about to happen. I welcome any and all comments. I see this as not only a way to update everyone on what is physically happening but I'm sure I'll be sneaking in my thoughts and feelings on how things are going and how I'm doing on any particular day. For that reason I'm not always guaranteeing it's going to be PG13 around here!<br />
<br />
The bottom line is this: on Wednesday, November 4th, 2009 I was informed that I have Nodular Sclerosing Hodgkins Lymphoma. At age 31 I was told I had cancer.<br />
<br />
Peace,<br />
BenBenhttp://www.blogger.com/profile/16696785325715208526noreply@blogger.com2