The Light The Night Blues

So the Light The Night Walk is less than two weeks away. I have to say I'm a little disappointed this year. Our team is only half the size it was last year and the fundraising hasn't gone as well as I'd hoped. I've already lowered our team goal twice, from a lofty $5000, to a more reasonable $2500, and recently down to $1000. I've also lowered my personal goal to $100. As of today, the team has raised $645 online. One way that Maria, Vivian and I are trying to raise money is by selling candy at work. We sell candy for $1 each to our co-workers and all the profit (just under 50 cents) goes towards our Light The Night goals. It's an easy way to raise money without having to constantly bother our friends and family for donations. We haven't added that money to our total yet, so I'm hoping for at least $200-250 more between the three of us.

It just seems like people aren't as interested this year in walking, and/or raising money. My only guess is that last year, both Sarah and I were in the thick of dealing with cancer and treatment, so we had a lot more people who wanted to be there and support us. Since we are both now in remission and back to our normal lives, I think some people have moved on. I really do appreciate those who signed up this year and who are trying to raise money. I'm glad people want to be there to support me, but unfortunately, it doesn't help cancer research and save lives unless they also fundraise. Maybe I have the wrong attitude about it. I just can't help that I feel disappointed this year. I'm sure the day of the walk, it'll be great to see everyone there for a good cause and to know that whatever amount we come up with is more than if we didn't do anything at all.

It's not too late for you to donate!

Still cancer-free

Last week I had a follow-up CT scan of from my neck to my pelvis and I found out on Tuesday that everything is still clear & cancer-free. My oncologist explained that I do have a slightly enlarged lymph node though. He explained that the PET scan they did on me back in December, right after I finished all treatment, was negative for cancer. So one thing they check for with the CT scans is to make sure that lymph node doesn't get any bigger. If it stays the same size, even though it's "enlarged," it's most likely just scar tissue. If it would get any bigger compared to its size on the PET scan, then they would have to check into it further. The nurse practitioner also went over my lab results and explained how various counts have returned to the normal range after treatment or are on their way - all good signs. The list of what they test from that vial of blood they take was huge. They also both ask the routine questions - how am I feeling? Any sickness? Any change in eating/sleeping/pooping? Any pain/tingling/numbness? How is my energy level? It's basically 5 minutes of me answering "no" to every question. Overall, it was a pretty uneventful - but good - visit.

And now onto some random cancer related thoughts...

One thing you never have to think about until you have cancer - or some other life altering disease or condition - is how and when to tell people. It was heart wrenching to tell people when I first found out I had it. I'm not sure I handled it the best in hindsight - I probably should have waited to tell most people until I knew how bad it truly was and what the treatment plans were. But now that I'm in remission, telling people that don't already know I have it and what I went through has its own set of challenges. When I started my new job in January, I kept it to myself of course. But over time, you make friends with people and I found myself having to purposely think of how to word things in general conversation based on the fact that the person doesn't know that I have cancer. I knew eventually I would have to tell someone, but when is the "right" time to bring it up? How would they react? Would they think I was lying to them this whole time? Am I going to ruin their day?

About two months ago I told one of my co-workers who I am friends with and it was a big relief. We eat lunch together every day and it was just getting annoying trying to tiptoe around the elephant in the room of my head. He thanked me for telling him and I'm glad I did. Last week, I told another co-worker. This time, I felt some pressure. I knew I was having a CT scan and that I would post something about it on Facebook, which he would be able to see. I didn't think someone seeing a Facebook post about still being cancer-free is an appropriate way for someone to find out. So I told him at lunch. It's still a hard conversation to start. You don't just want to spring it on someone - "I have cancer." Their mind will probably immediately think that you are dying. So I wanted to break it gently, but even that builds up to sounding bad. "I have something that I want to tell you." "I'm not sure how to say this." "I just want to first say that I'm OK." I think I'm just going to print up some business cards to hand out when the time is right. "Sorry to break it to you like this, but I have cancer. I'm OK. I went through chemo and radiation last year and I'm now in remission. If there is anything specific you'd like to ask, please do."

I once heard that Hallmark has a card for every occasion. Well, I now know that it's true. I was looking at greeting cards at Kohl's recently and I came across a small section of cards to give to people with cancer. There were only 4 of them, but it was interesting to see them nonetheless. They were your basic cheer you up, get well soon type card, but a bit more humorous and clearly aimed at cancer and related issues like the side-effects of chemo or whatnot. I'm glad they make them because having cancer and going through treatments can leave you lonely and depressed and I wish more people knew about them so they could brighten a loved one's day. In addition to Kohl's, they are available online here and probably most Hallmark stores.

Pretty soon it will be time once again to start fundraising for the Light The Night Walk. I'm still hoping more people join our team. I registered a couple months ago, sent email invites and posted it on Facebook, but so far, there are only a few people signed up. Not sure why everyone is waiting. I hope they had a good time last year and found it worthwhile. I was hoping our team would grow to be even larger this year and I even stretched our team's goal to $5000! I hope that wasn't just wishful thinking. To anyone reading this blog, please consider signing up to walk & fundraise and/or making a donation.

A long, overdue update

I’ve been meaning to update this blog for a long time now. I’m not sure why I haven’t exactly. I probably just never think of doing it at a time where I can actually write. So here is my long overdue, catch-up blog entry.
 
First things first – I’m cancer free! I had a PET scan in early December which came back clear. I also recently had my three month follow-up, a CT scan of my neck and chest, which also came back clear.
 
I am scheduled for two more CT scans this year, one in June and another in October. My oncologist said that the first year or two is when Hodgkin’s Lymphoma is most likely to come back. So I’ll have scans every 3 months or so during the first year and then they will start to spread out a bit more in the 2nd year and beyond.
 
I still get nervous on occasion about the possibility of the cancer coming back or of a different cancer appearing, but overall, I seem to be managing that pretty well. I’m sure around the time of each scan and waiting for the results will be the hardest. I do think about cancer every day though in some form. It is something that has affected my life forever and I’m not sure there will ever come a day where I don’t think about cancer somehow. All I can do is hope the scan results keep coming back clear and work on getting myself healthier in other ways so that the chances of cancer developing are minimal.
 
Since I last posted at the end of October, my life has slowly become as normal as it can be. While I was a nervous in November, waiting for my scan in December and the results, Maria and I were able to visit family for a week in Houston over Thanksgiving. In December, I was offered a job that started in January. It was the same job that I was offered back in August that was unable to work around my remaining treatments and doctor appointments. I got to enjoy the holiday season cancer-free, while anticipating starting a new job.
 
Just after the new year, Maria and I took a much needed mini-vacation to Las Vegas. Since we didn’t know if or when I would get time off for a vacation at my new job this year, we decided to take a trip before I started working again. We had a great time in Las Vegas. We stayed at Mandalay Bay and upgraded to a penthouse suite, which was amazing. We saw the Lion King broadway musical and went to the Hoover Dam. It was so nice to start the year off with something fun and relaxing after such a terrible 2009.
 
The following week I started my new job, which is going well so far. Everybody at work is very friendly and seems to enjoy working here. Plus, the company has never laid off a single employee from what I’m told, so that’s comforting. If things go well, I could see myself working here for a very long time.
 
I guess that’s about all I can think of for now. I’ll still post from time to time, most likely around scan times or regarding my fundraising efforts for the Light The Night Walk for the Leukemia & Lymphoma Society. Remember, I’m very open to answering questions from my family and friends, so feel free to check in with me other ways. Until next time…

The end of treatment.

Today, I had my last radiation treatment. I'm glad it's all over. I saw Dr. Gore yesterday and since there weren't any issues, I will see her again for follow-up in January. At my last session today, I received a certificate that says "Happiness is the last day of radiation!". I also got to bring home the mesh mask that was used to ensure I was positioned correctly every day. I was going to ask for it anyways, but they offered it to me. In the photo below, you can see some of the markings they used to ensure I was lined up correctly with the lasers built into the ceiling. You can also see an outline of part of the area that received radiation.

My radiation mask

When I left radiation for the last time, the two technicians that were working gave me a hug. I thanked them for everything and left. Maria took a half day off work to spend time with me in celebration of finishing treatment. We met up at home, then had a great lunch at Ruby Tuesday and saw a movie.

My next steps now are: 1. to have my port removed as soon as possible and 2. get a PET scan in December and meet with Dr. Fenske for the results. I anticipate the results of the PET scan being good and hoping to hear that I am officially in remission.

I guess tomorrow my life returns to normal... well, as normal as it can be. I'm not sure how I'm feeling about everything right now. I should feel more excited or relieved, but I think the daunting prospect of having to find a job is weighing heavily on my mind. I am glad I don't have to go to the hospital on a regular basis anymore. Maybe once I am told that I'm officially in remission, I will feel more happy. For now, I'm OK and trying to be optimistic.

Eleven down, six more

Things have been going really smoothly so far. I am in and out of treatment in 15 minutes or less each day and I have been able to do whatever I feel like doing.

At this point the only side effect I am experiencing is a sore throat, which was to be expected. It started out pretty mild about 4 or 5 days ago, but has been getting progressively worse. It's not unbearable, however certain times are painful. When I sneeze, it feels like part of my throat and the inside of my ear are being ripped out. It's not nice, and I've been sneezing a lot lately due to allergies. I also felt my throat hurting when I ate breakfast yesterday. I made the mistake of eating toast, and the dry, rough bread didn't feel so nice going down.

Luckily, I saw Dr. Siker and Dr. Gore after treatment. Dr. Siker was more friendly and calm than at our first meeting. I enjoyed talking to her for those few minutes. When I told her about the sore throat, she gave me a prescription for a numbing solution that I can take before eating. She also told me to take Tylenol for the pain. I first used the solution before dinner last night. It's a combination of several ingredients, one of which is lidocaine. It feels odd because it does make the parts it touches numb, so for awhile, I could feel that tingling numbness on my tongue, lips, and the back of my mouth. It did help though, because I was able to eat dinner without any issues. It doesn't taste the best, but it's not awful either. The solution has a slight minty taste to it and has a creamy consistency - probably to better coat the throat.

I'm so glad that I only have six more radiation treatments left. This will be done soon and I can return to a somewhat normal life again.

An unwanted change

Each Monday after radiation I am scheduled to meet with my doctor. The only problem is, they have changed my doctor on me. Back in August, I first met with my radiation oncologist, Dr. Schultz and a resident, Dr. Wood. Then in September, I saw Dr. Wood again at the radiation planning session.

I remember being told briefly that Dr. Schultz would be out of the office, but I thought it was just at the end of September and beginning of October. To my surprise, when I received my radiation schedule, I saw that I was actually going to be seeing a Dr. Gore each week. I wasn't sure what happened to Dr. Schultz but since I only met with him once, it wasn't a big deal. I figured at least I would still have Dr. Wood, who I really liked. He explained things thoroughly and just came across friendly and knowledgeable.

Today, while waiting to see Dr. Gore, a new resident came in. Her name was Dr. Siker. I can't say I liked the change. It may be too early for me to judge since I didn't have any questions or issues to discuss, but when she came in the room, she didn't seem very prepared and seemed in a rush. She had to look up on the computer what I was being treated for and what part of me was being treated. Other than asking me if I had any problems, side-effects or questions, she quickly looked in my throat, which seemed like an afterthought. She and the nurse then left the room. Her whole interaction with me was maybe 60 seconds.

After a few minutes waiting, Dr. Gore came into the room, with Dr. Siker and the nurse behind her. She said that even though we hadn't met before, she "knew all about me," and explained that the residents rotate every 3 months, so Dr. Wood was now at a different hospital and Dr. Siker was the new resident. She also mentioned that Dr. Schultz was out of the office and she took over some of his patients. I mentioned to her that I've had a weird taste in my mouth lately, and she stated that was normal. She then confirmed that I had no other questions or issues and that was it. Again, it couldn't have been more than a minute total. I literally spent more time in the office alone waiting for them to see me than the time that was actually spent meeting with me. I hate when that happens.

One week down... two and a half more to go

I started radiation therapy on Monday. The week just flew by for me. I can't believe I'm already done with almost 1/3 of my radiation. At this point, unless more are added, I will have a total of 17 treatments. I go to Froedtert Hospital for treatment every weekday at 10:45am. I will see a doctor each Monday after treatment. I think the original doctor I met with, Dr. Schultz, is unavailable this month, so I am scheduled to see a Dr. Gore instead.

At my first treatment on Monday, they took multiple x-rays, scans and eventually, gave me the radiation. It took close to an hour for everything, which was a long time because I was laying on the table with my head locked in place by the mesh mask that was made at the planning session a couple weeks back. It didn't help that they had trouble taking one of the x-rays and also had to readjust where I was laying on the table in order to give me the radiation. After the appointment, I had imprints on my forehead from the mesh mask. They didn't go away for hours!

This is what my face looks like immediately after each treatment due to the mask.

My treatments on Tuesday and Thursday would have been fine except that their computer crashed while I was on the table. Luckily it happened before the actual radiation part started. My treatment today was perfect. I was on time for my appointment at 10:45am and was back in my car by 11:05am. Here is what happens at each appointment:

• There are multiple technicians involved in administering the treatment, usually three of them each day. Although I don't see the same three every day, I have seen most of them at least 2-3 times this week. There are a couple women most often and during the last couple days, a male student as well.
  
• After one of the techs walks me from the waiting room to the treatment room, I lay on the table and get situated so the back of my head and neck sits on a plastic holder.
• A cushion gets put under my knees and I am given a ring to hold onto so that my hands are resting on my stomach.
• The mesh mask is placed over my face and is clampsed onto the table so that it stays in place. Usually during this process, I have to adjust the angle of my head and neck so that my face fits into the mask just right. The mask feels tight all over, especially on my forehead and chin. I can understand why some people feel claustrophobic because of it. I don't love the feeling of being locked in place, but I deal with it fine.
• The table is raised and moved into a specific position.
• The technicians leave the room and a CT scan is done. This scan helps them ensure that the radiation is directed at the right area.
• After the scan, a tech moves the table into a different position and leaves the room again. Now the first dose of radiation comes. I believe (but never confirmed) that this dose comes upwards from underneath me. I would say this first dose lasts about 20-30 seconds. The machine makes a buzzing/screeching noise when the radiation is happening. I wish that it didn't.
• After the first dose of radiation, a technician comes back in, moves the table to yet another position, and then leaves. The machine also rotates it's position so that part of it is over my left side. Again, I haven't asked, but I believe now the machine is directing the radiation down at me, from the front of my neck toward the back. Just like the first dose, the machine makes the buzzing noise while the radiation is happening. The second dose seems to take longer than the first dose, but still probably only around 30 seconds at the most.
• At this point I am all done. A technician takes the mask off my face, removes the knee rest, and walks me out to the exit.
• On a good day, like today, where the computer isn't crashing, this whole process only takes approximately 15 minutes.

So far, I don't think I have experienced any major side effects. I have had a weird taste in my mouth the last few days, so I'm pretty sure that is from the radiation. Other than that, I feel fine. I really can't believe that I'm already one week into treatment. I'm so excited that I'm almost done with treatment for cancer and that I will be able to really start looking for a job again. I feel bored and lonely all the time and I can't wait for things to get back to normal somewhat.