A Terrible Limbo

Greetings All,

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.

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.

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.

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.

Peace,
Ben

A Glimmer of the Finish

Greetings All,

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.

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.

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.

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.

Peace,
Ben

The Home Stretch

Greetings All,

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:

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.

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.

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.

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.

Peace,
Ben

Making Progress!

Greetings All,

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!!

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.

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!!

Peace,
Ben

Check Please!

Greetings All,

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.

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.

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.

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.

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.

Peace,
Ben

The Halfway Point

Greetings All,

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.

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.

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:
          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.
         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.
        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.
       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.
       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.

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.

Peace,
Ben

Port Placements and Birthday Wishes

Greetings All,

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.

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.

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.

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).

Happy Birthday my love,
Ben