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.

Moving on to the next phase of treatment

Last Friday I had my last chemotherapy treatment. I am so happy that phase is over. While the last treatment wasn't as bad as the previous one, I did still throw up at the hospital immediately after it was over. I can envision the nausea and other side effects only getting worse as time goes on, so I'm glad to be done with chemo.

Yesterday I had my radiation planning appointment. It went smoothly. I talked to the resident doctor, Dr. Wood for a bit. He explained the planning process again and we talked a bit about side effects and other questions I had. He mentioned again that the chance of getting another cancer from the radiation is .25% per year. Because I'm relatively young (I sure don't feel like it anymore!) that means in 20 years, I'll have a 5% chance and in 40 years a 10% chance.

During the actual planning session, I laid on the table of a CT machine while the radiation technicians got me into place and made various markings, took measurements and photos. They even took a photo of my face just for the purpose of visual identification - so they can physically see that they are giving radiation to the right person.

Part of the preparations included them making a mold of my face. A technician took a warm plastic mesh with a hard frame on three sides and stretched the mesh down over my face and chin and connected it to the cradle on the table where my head was laying. Although I was trying to keep my eyes closed (the stretchy mesh kept pulling them open), I was able to see and breathe through the holes in the mesh. I was warned that some people have claustrophobic issues when this is done, but I didn't experience that. Once in place, the mesh was cooled off to help it harden and keep its shape.

Once everything was ready, they scanned me using the CT machine - with the mesh mask still keeping me in place. The doctor will use the images from the CT scan to determine how to set up the radiation so that it radiates the areas that should receive it and avoids other areas as much as possible. I was also marked in three places with a blue marker - one on my chest and one on each side near the top of my ribs. The markings were covered with clear stickers to help keep from washing off. These markings, along with the mask, will help them ensure that I am lined up properly every day.

After the planning was over, the nurse practitioner wanted to talk to me more about side effects. She gave me a booklet with details as well as some special lotion and special mouthwash. The lotion is for the area of my skin that gets radiated, because it will start to look sunburned over time. The radiation from the sun is how people get a tan or sunburned, so the effects of the radiation treatments are similar.

I was given my first appointment for radiation. It starts October 5th and will continue every weekday for 3.5 to 4 weeks. That gives me just over a week of normalness before the next phase of my cancer treatment starts. Although going to the hospital every day will suck, at least it will be over in a month and I'll (hopefully) be cancer-free and back to a normal life in time for the holidays.

Maybe I'll get some sort of super powers!

On Friday, Maria and I met with my radiation oncologist, Dr. Schultz, to discuss the plans for radiation treatment after I'm done with chemotherapy. We spent a good deal of time with Dr. Wood, a resident, first. He explained much of the radiation process, risks and benefits. Dr. Schultz came in afterwards, reiterated some of what Dr. Wood said, and answered any other questions we had.

I really was hoping I could skip radiation altogether. Even though people can be treated for Hodgkin's Lymphoma with chemotherapy only, years of data has proven that a combination of chemo followed by radiation therapy has the highest success rate for curing this cancer.

Dr. Wood explained that there is a possibility of me getting a different cancer in the specific areas they radiate, but that chance is 1/4 of 1% per year. So extremely low, although because I'm "young," the longer I live the more chance of that happening later on as those quarter percents add up. (I put the word "young" in quotes, because I'm 31 and I sure don't feel young anymore.) I asked Dr. Wood why would I need radiation if the chemotherapy ends up completely getting rid of the cancer. This is one of those cases where the benefits outweigh the risks. The risk of having the Hodgkin's come back if I don't have radiation is much higher than the risk of getting a new cancer from the radiation.

The radiation used for my specific situation will be milder than people with other types of cancer. I'm pretty sure the phrase "well tolerated" came up. I would receive treatments 5 days a week, with the actual radiation portion of each appointment lasting only minutes. Dr. Schultz said I would receive the treatments for 3 to 3 1/2 weeks total. The most common side effects I may experience would be some pinkness to the skin, like a light sunburn; loss of hair on the back of my head and on my neck; and sore throat. Dr. Wood mentioned that the top of my lung may be in the area that is radiated, so I could develop a cough for a time. These should all go away within a few weeks of the treatments ending. Long term, I will need to have my thyroid function checked and could end up on thyroid medication if the radiation affects it. Due to the thyroid's location in the neck, it can't be avoided completely.

As part of the preparation process, I will have a mold made of my face and neck. This will be used to ensure I am in the exact same position at every treatment. They will also do a CT scan to figure out where everything is inside my neck. They will then angle the radiation to avoid important things, such as my spinal cord. When I go for radiation each day, I would receive two doses, one coming at me from the front and one from the back. Each dose would last about a minute and a half. Apparently it seems similar to getting an x-ray, so I won't even know when exactly it's happening.

Dr. Wood said that people can and do work while receiving radiation treatment, so I should be able to accept a job offer, even one where I'm talking on the phone all day, should I find one.

Overall, I feel more comfortable about getting the radiation treatments. I still would rather not have it done, but I told myself I would do whatever needed to get rid of this cancer and not have it come back. This is what is needed to accomplish that.

Good news, disappointment, and a crappy day

Yesterday was my fifth chemo treatment. That would be Cycle 3, Day 1. I woke up unusually tired feeling that morning and as usual I was not looking forward to getting treatment. I'm always concerned about the nurses and techs having trouble with my port, I know that it's always a long day, I know that each chemo treatment brings me about a week of feeling like crap in various ways. I just hard to feel happy on those days. It really hit me when we were pulling into the Froedtert Clinical Cancer Center parking structure. That is when I felt most down about everything that was yet to come.

My lab work was scheduled for 11:30am. We got there a bit early and they called me in pretty fast. Must have been a slow day. Thankfully the tech had no trouble accessing my port, unlike the last two visits. What did affect me is the saline flush they do. They flush the port/line with saline from a syringe before they draw blood and then again afterwards. Every time, I can TASTE it. It is just an awful taste that I can't even describe. It sort of tastes like it smells - medicine-y. Some people say metallic-y. I don't go around tasting much metal so I can't say that's what it's like but either way its horrible. I've begun sucking on hard candy while they do it but it doesn't help much. Yesterday was the worst ever. When the tech flushed at the end of the blood work, I gagged. I had to force myself not to throw up instantly from the taste. It was really terrible.

After the lab, we had about 45 minutes before my appointment with Dr. Fenske. Maria and I shared an unhealthy lunch in the cafeteria. Nothing really looked good, so we got fried chicken with sides of macaroni & cheese and mashed potatoes w/gravy. They probably even shouldn't sell that fattening of food in a hospital, should they? The chicken was pretty tasty but the sides were bland. At least we were sharing one entree, so we didn't have to feel as bad about how unhealthy we were eating. Oh, we also topped it off by sharing a piece of Elegant Farmer Apple Pie. We couldn't resist. We've always wanted to try their pie, but never felt right spending $13 on a pie before. It was super delicious!

On to my appointment with the oncologist. First, they called us back late, and then it took awhile for Julie, the nurse practitioner to come into the room, and then after she left, the doctor came in. So the good news is, based on the PET scan I had the day before, the cancer has shrunk drastically. If I remember right, it's now something like 2cm x 1cm in size. The nurse and doctor seemed very pleased with the progress. On a side note, they also both are impressed that I still have a full head of hair. Of course, I lose a bunch everyday, but overall it still looks good - just thinner than normal.

The doctor also talked to me about my options for continuing treatment. I could go the normal, time tested approach of having less chemo followed by radiation -or- I could try the less tested approach of skipping radiation and just having more chemo treatments. I really wanted to avoid radiation if possible. There are risks to having radiation but there is also a slightly higher risk of having the cancer come back if I don't have the radiation. Since I told myself at the beginning of this that I would do what it takes to get rid of it, hopefully for good, I told him we should include radiation. I'll be seeing the radiation oncologist next Friday for a consultation. I think talking to him will help me truly decide if that is the best option for me or not. Since I still have 3 more chemo treatments to go through before radiation would start, I'm pretty sure I can still change my mind. A lot of it depends on where exactly they want to radiate. If its just my neck, that's one thing but if they want to do any lower, near my chest - that may be a deal breaker for me.

So even though I received good news about the cancer shrinking, I didn't feel happy about it. I think in my head I already worked out that the cancer would be amazingly gone already so I would just need to finish up the planned chemo and could skip radiation altogether. I realize that's not rational and I'm normally a very logical person, but it's just what I've been hoping for I guess. So finding out the cancer is still there, just much, much smaller and that I should still have radiation was disappointing somewhat.

Since the doctor appointment ran late, I was late checking in for chemo. The appointment was for 1:30pm, but I checked in around 1:50pm. You'd think they would have been ready and waiting for me to show up, but no. Instead, we sat around some more. They finally took us back to start around 2:30pm. I warned the nurse about my gagging on the saline flush earlier that day. I did OK when she flushed at the beginning of chemo but at the end of it when she flushed again, I nearly lost it. More than a gagging, I really had to control myself from throwing up. On the way out of the hospital, I stopped to use the restroom and I almost threw up in the sink while washing my hands. It really sucked. I felt nauseous for a long time. Just thinking about the saline taste would make me feel sick again. I had to keep my mind off it. Eventually with some fresh air, deep breathing, and trying not to think about it, I was OK. Maria and I ate dinner and ran to a few stores on the way home. After all that, I was just exhausted from the long, crappy day.