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.

My new look

I really lost a lot of hair during chemo - not all of it - but a lot. Every day I have hair in my hands after shampooing, my towel is full after drying off, and there is hair all over the bathtub, sink, floor, etc. My pillow and even the headrests in our car have my hair all over them!

Although I'm now done with chemo, I know it will probably take awhile for my hair to start growing back in and I just couldn't stand the way it looked any longer. I normally have a thick head of hair that I style to ensure I leave the house looking good. Since starting chemotherapy, my hair, especially the top, is so thin that just trying to style it and make it look decent each day was a frustrating experience. So on Tuesday, I finally took the plunge and had my hair buzzed off.

my new (and hopefully temporary) look

In the photo, it may look like I have a normal amount of hair still, but I really don't. In person, you can see tons of my scalp. I can't say that I love my new look, but it will be less irritating for the time being. Plus, I do have my cool fedora to wear as needed.

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.

Light The Night Walk: Results

Last night was the Leukemia & Lymphoma Society's Light The Night Walk. Although my feet still haven't forgiven me, I had a great time! I got to meet some great people and I think we all really felt part of something awesome! Team Reese's Pieces raised over $3200 online plus some cash and check donations that were turned in at the event. All in all, the walk raised over $180,000 for LLS.


Everyone attending the walk got a lighted balloon to walk with. Sarah, Rebecca and I received white balloons and special shirts signifying that we are cancer survivors.


Walkers there showing their support received a red balloon while those walking in memory of someone received a gold balloon. Over 1000 people walked for two miles along the lakefront and back.


I am so happy to have participated in the event and am grateful to everyone that walked on or donated to our team. We were more successful than I ever thought we would be. I can't wait for next year to try and raise even more!

Below are random photos from the walk of our team:

Light The Night Walk: Update

It's only a few days until the Light The Night Walk for the Leukemia & Lymphoma Society. This past Saturday, we held our yard sale and lemonade stand as planned. Two of our friends that are walking on Thursday, Jada and Vivian, participated in the sale, while we also received additional items to sell from my mom and our friends Nicole, Jerry and Heather.

We decided not to put prices on our yard sale items in hopes that people would offer more since all proceeds were going to charity. I'm not sure that actually was the case as people seemed to be bargain hunting and there were quite a few things that sold for less than I would have liked. The good thing is some people did give above and beyond, so that helped make up for the cheapskates. :)

We sold cups of lemonade for any donation amount and candy bars for $1 each. Vivian also grilled hot dogs and sold them for $1 during the sale. Although we still had a lot of items left at the end of the sale (that were then donated to Goodwill), we did raise over $260 from the yard sale, plus the additional donations from the lemonade, hot dog, and candy sales. In the end, over $300 was raised for LLS.

I was worried for awhile that our team may not make the $2000 goal I set for it a few weeks back, but as of right now, the team has raised $2190 online. Maria (with help from Vivian) has been selling candy bars at work to help reach her goal. Once the yard sale and candy bar proceeds are submitted and everybody turns in any cash and check donations they have received, our team will have raised over $2500 - probably more!

Remember, it's not too late to donate! Click here to donate to me or click here to donate to Maria. Any amount is appreciated!

Why doesn't alcohol come in other scents?

My treatment last Thursday SUCKED! Chemo days are always long days, but in addition to treatment, I was also seeing my oncologist. I'm not sure what it was exactly, but I threw up several times that day. I went in at noon to have my blood drawn for lab work as usual. I was a bit nervous because more often than not, they have trouble accessing my port and the fact that I nearly threw up from the saline and/or heparin they push through it during my previous treatment. I noticed immediately that just the smells of the hospital, such as alcohol wipes or alcohol-based cleaning products or "clean" as Maria calls the smell, starts making me feel queasy. (Note to Self: Start bringing spray air freshener along to treatments.) I explained to the nurse how I nearly tossed my cookies two weeks earlier so she agreed to push the saline in slowly. It helped, but I did still taste it, especially at the end when she had to push faster to clear the blood out of the IV line. After the saline flush, they inject heparin, which helps prevent blood clots from forming in the port line. The heparin tastes like the saline, only worse. I made it out of the lab without vomiting, although I could tell I was not out of the clear yet.

We had almost an hour until I saw Dr. Fenske so Maria and I left the hospital and went to Bruegger's Bagels nearby so I could eat lunch. I thought I would be fine, but it hit me in the parking lot before we went inside to eat. I threw up. Luckily, not much came up since I had barely eaten anything for breakfast. The good thing was that the parking lot was behind the store, so I wasn't vomiting on Wisconsin Ave. at least. I was embarrassed a bit though when I saw a couple people come around the corner to the lot just in time to witness me puking. I probably ruined their lunch.

As usual, the doctor's office was behind. My appointment was scheduled for 1pm. I think the nurse practitioner, Julie, came in around 1:45pm. She asked me the normal questions. I explained how I had been feeling like crap lately, even on the days where I normally feel great. She checked my blood test results and everything looked normal. I also told her how I was becoming more sensitive to the saline and heparin and how I threw up after having my blood drawn. She suggested I take a lorazepam prior to coming to chemo as nausea can be triggered by many things.

After Julie left the room, it was approximately 10 more minutes before Dr. Fenske came in to talk to me. He didn't really tell me anything new, but he did clarify the results from my last PET scan a bit. He said while the CT portion of the scan showed a small amount of cancer still, the PET scan was "negative." I asked if that meant that I was cancer-free. He didn't come right out and say I was cancer-free, but said that sometimes the CT scan shows lymph nodes that just stay swollen or possible scar tissue. He explained the PET scan shows "active cancer," which in my case, was negative. So that's good to know. Plus, I'll have had 4 more chemo treatments after that scan, so I should really be in good shape then. He set me up to have my next PET scan in the beginning of December, which will be around 6 weeks after I'm finished with radiation.

After my appointment with Dr. Fenske, we headed to chemo. Of course, even though we were late (due to the doctor's office running late), I still had to wait around a bit. The chemo itself went normally, but when it was almost over, I went to use the bathroom, and began throwing up. It really sucked and it just kept coming. When I was finished, the nurse gave me more fluids through my IV and ordered me some liquid lorazepam from the pharmacy to inject in me. Eventually we left and I laid down on the sofa almost immediately after getting home.

Later that night, I did not feel good whatsoever. I had the chills and was super cold. I took my temperature and it was 99.5, so I knew I had a touch of a fever. I fell asleep on the couch after awhile and woke up extremely hot and sweaty. I took my temperature again and it had rose to 100.3. I knew if it got to 100.5 or higher I would have to call the hospital, per their standard instructions. I started to cool down almost immediately after waking up though, so I didn't have to.

Since then, I've been trying to take it easy so that I don't feel so exhausted all the time. I think my usual schedule of feeling yucky for a week followed by a week of feeling normal has ended. I'm trying not to run myself down by doing too much, which is not always easy since I have stuff I want to or need to get done. The next few days won't be easy because we have our charity yard sale and lemonade stand benefiting the Leukemia & Lymphoma Society this Saturday and I still haven't started getting things together for it. But, I know in the end, it will come together somehow. Hopefully we will have a good turnout and good weather. My friend Jada is trekking down from Port Washington to join us. I'm really looking forward to it.

The good news for me is that I only have one more chemotherapy treatment left. I'm so happy because I can only imagine the chemo getting harder and harder to deal with from this point on. Even today, nearly a week after chemo, I still feel nauseous at times. Certain smells and thoughts trigger it. It was even hard to type some of this post at times. I know I still have radiation treatments coming soon, but at this point, I'm almost welcoming the change.

The last two weeks

Since my last treatment two weeks ago, I've been feeling pretty crappy at some point each day. It mainly comes at night. I feel very run down and exhausted as well as cold. I cover up with a blanket and have even been wearing a sweatshirt around the house. It seems like this started when the weather changed from warm summer to cool fall. I seem to be one of those people that is affected by drastic changes in the weather, but usually I only feel bad for a day or so. This has lasted well over a week - since last week Tuesday.

Maria, my parents and even my friend Patti Anne told me they think it's related to me trying to do too much too soon after my last treatment. They are probably right. We've been having our bathroom remodeled and last week I was running lots of errands and was in and out of multiple stores each day. On Saturday, we went to the zoo, then to dinner, and then out with friends to celebrate my earning of an Associate degree. On Sunday we attended my father-in-law's birthday party, then later that night and the next morning I painted our bathroom. Again, I felt like crap at some point each day. The last day or two I've been trying to take it easy and relax because I want to make sure I get my 2nd to last chemotherapy treatment tomorrow. I'm going to tell Julie, the nurse practitioner, how I've been feeling to see if she is concerned about it. I think its probably a combination of the cold yucky weather, running myself ragged, and maybe even a low white blood cell count.

I'm really looking forward to being done with chemotherapy. Although I was initially scared of getting radiation treatments, at this point, I'm OK with it and almost welcome the change. Although I know there are people having to go through worse chemotherapy treatments than the type I receive, this hasn't been a walk on the beach for me and the end cannot come soon enough.

Light The Night Walk: Update & Yard Sale Plan

Our team, Reese's Pieces, is doing great! We have raised almost $1500 and have a goal of $2000 with just under a month left until the walk. An email was sent out that identified the top 10 fundraising teams so far, and our team is in 7th place, so that's awesome!

I had a great lunch with Jada and Wednesday and we worked out some ideas to hold a yard sale and lemonade stand at my house on September 12th with all proceeds benefiting the Light The Night Walk for the Leukemia & Lymphoma Society. Hopefully many members of the team will join us and help raise money at the sale and maybe some of our friends and family will stop by to show their support as well!

If you haven't yet, please consider making an online donation to me in any amount. It's super easy, it's tax deductible, and it makes you feel all warm and fuzzy inside! Click here to visit my donation page today!

I HATE CANCER! (a rant)

Why is there cancer? That's something I ask myself almost every day. I hate it. I hate having it. I hate that others get it. I especially hate that many people die from it. Already in my life, I've had my grandma that I was closest to die from lung cancer because she was a smoker. Seeing her towards the end was so scary and very sad. She regretted the years of smoking as she laid there dying. Our friend's dad had to be treated for prostate cancer last year, but at least is doing great now. A former co-worker friend had Hodgkin's Lymphoma about 12 years ago and kicked it's ass! Sarah, who I only knew as the sister of a friend of a friend originally, now is my lifelong cancer buddy (whether she knows it or not) since she was also going through chemotherapy for Hodkin's Lymphoma at the time I found out that I had it. She has been such a big help to me, answering my questions and just sharing her opinions on what we've each been dealing with. Although she has had a hard road to recovery, she is finally done with chemotherapy and doesn't have to have radiation and today she is cancer-free! But then yesterday, I got a message from another former co-worker friend that her mom was diagnosed with breast cancer in June, which has now spread to her lymph nodes. This just sucks so much. I don't even know the woman yet I began to cry when writing my friend back. I wish her and her family the best on what I imagine will be a long road to recovery.

I really wish my friends and family would stop smoking, cut down on drinking, eat healthier food, exercise, and do the best they can to prevent getting cancer, because I'm only 31 and cancer has already affected my life and the life of people I know and care about in so many ways, that I just can't take anymore.

I really hope they figure this cancer shit out some day and there really is a cure or even better, a way to prevent it. I know treatment options have come a long way over the last 30 years, but there is still a long way to go. That is why I decided to walk to raise money for the Leukemia & Lymphoma Society next month and will continue to do so every year until I no longer can.

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.

Time for a new PET... and not the fluffy kind!

Today I had another PET scan. It was supposed to happen Monday, but the machine wasn't working right so they called me to reschedule. I thought I would be more nervous than I was. It was pretty uneventful. I was hoping they wouldn't use the port to put the radioactive tracer in me - and they didn't. I also got to listen to music on my iPhone during the 45 minute sit-and-be-still while the radioactive shit works its way around, as well as during the actual scan. I chose one of my favorites, Jason Mraz, to listen to because his music is very calm yet awesome.

Maria took off work to take me to the scan, although I could have went alone. It really was no big deal. It was nice though that we got to have breakfast together afterwards before she headed to work for the remainder of today.

I'll find out the results of the scan tomorrow when I see my oncologist and get my 5th chemo treatment. As usual, I'm not looking forward to treatment and the week of feeling like crap. I'm hoping the PET scan comes back with good results - then I will truly know the chemo is working and the crap that goes along with it is worth it. I keep hoping that the scan will come back showing the cancer is gone already, but I don't know how realistic that is. It sure would be nice though.

Tonight I have class. 3 classes left and I will have officially earned my A.A.S. degree in Marketing Management. I'm so ready for a break from school. You would think that since I'm not working, school would be a welcome change and I'd be happy to attend class each week and do homework for something to do, but that's not how I feel at all. I've been going for 2 years straight with no breaks and I'm ready to be done for the time being.

My team for the the Leukemia & Lymphoma Society Light The Night Walk keeps on growing and raising money! It is really awesome. Just over a week and the team has already raised $1085.00! I had to raise the goal again - to $2000 - so that there is always something to strive for. Our team will likely have over 20 people participating in the walk on September 17th!

Remember, if you haven't already, please sponsor me and donate whatever you can using this link. Every little bit helps towards fighting blood cancers such as Leukemia and Hodgkin's Lymphoma.

Light The Night Walk: Getting Started

A couple weeks ago, Maria found out that the Leukemia & Lymphoma Society would be holding its annual Light The Night Walk in September. We decided right away that we would do the walk and try to raise some money. I didn't think about it much after that until last week, when I had lunch with Jada and asked her to join our team. Of course, being the friend that she is, said "yes" immediately. I probably could have asked her to do something crazy, like swimming with piranhas for charity, and she would have still said "yes." (Thanks Jada!)

So yesterday, while sitting around, taking it easy after my most recent treatment, I finally got around to typing up an email to all our friends and family, asking them to join the team and/or donate. I also talked to my mom to see if she and my step-dad Cameron would walk with us.

Now, less than 24 hours later, several people have joined our team and they have already raised $130! That's pretty awesome. Also, I am not the only person directly affected by Hodgkin's Lymphoma on our team. Rebecca, a friend/former co-worker battled Hodgkin's twelve years ago and is doing great after all these years! Sarah was diagnosed with Hodgkin's in February. Her most recent scan came back cancer-free (yay!) and now she is just finishing up her course of chemotherapy. Since Sarah was ahead of me in her diagnosis and treatments, she was able to answer questions I had and let me know that what I was experiencing was "normal." I am so glad they have both signed up for the walk and are already raising money!

Maria is planning on doing some fundraising at work, while I need to think of things I can do from home this summer to raise money. Since I'm stuck in the house most of the time, I've given myself a small goal of raising $50.00, although more would be nice!

With that in mind, I'm asking all my friends and family reading this blog to consider donating to this worthwhile cause. It doesn't have to be much, especially in this rough economy, but any little bit helps.

You can donate cash or checks to me directly or use a credit/debit card online here.

If you would like to join the team and walk with us, you can do so here.

Thanks for reading and I plan to update this blog with our team's progress periodically.

I hate this port

For the second time in a row, the lab tech at the hospital had trouble with my port. She stuck the needle in me but couldn't get it to do what it needed to do. She got a nurse to come help her and they ended up pulling the first needle out, pressed on my clavicle somewhat to make the port move a bit, and stuck me with another needle. At least the second one worked. I explained to the nurse how there was trouble last time as well, including abnormal bleeding after my treatment. She knew the bleeding was unusual but didn't know for sure why that would have happened. I really hope they don't have issues every time. I know the port makes administering the chemo easier, but I really do hate it. I think about it constantly. I can't get comfortable at times because of it, I feel it under my skin and I swear, even inside me. I just want it gone, but I will make it through this.

After the blood draws were taken, Maria and I went to the day hospital to check in for my chemo. We were about 15-20 minutes early, but we didn't have anything else to do. My chemo was scheduled for 2:30pm. Around 3:00pm I went up to the reception desk to find out what the hold up was. Apparently my lab results showed something that was making them wait to find out if they could even give me the chemo that day. Of course this was concerning. What if they didn't give me the chemo? Would I have to come back the next day to try again? Would I have to keep trying everyday until my lab results showed it was OK to proceed? Finally around 3:30pm I overheard someone (a nurse maybe?) on the phone asking if they could get started on my treatment. The day hospital waiting room was nearly empty by this time. I overheard that they were given the OK to proceed by Julie, the nurse practitioner that works with my oncologist. The nurse administering my chemo told me that my white blood cell counts were lower than they would have liked, however, I had previously been given chemo when the counts were even lower. Maria and I finally left the hospital around 6:00pm. It was a long day.

So far, the side effects seem to be happening as they normally do. On both Friday and Saturday, nothing tasted normal or good, especially beverages. I don't really love water, but that's what I've been drinking because juice and soda all tasted terrible to me. I've also been pretty tired, lying around and napping for most of Saturday and today. I can feel my mouth starting to hurt as well. I just have to remember, by Wednesday - maybe Thursday - most of this will be over and I'll be feeling fairly normal again. Until next week of course.

Numero cuatro

This afternoon I will be receiving my fourth chemotherapy treatment. I can't say that I've been looking forward to it. I never look forward to treatment days. I know it's helping me, but it's just the thought of all those chemicals going into me and the following week of various side effects, that make me dread treatment days. I wish this was all over. Sometimes it does seem to be going fast. After today, I'm pretty much halfway done with chemo treatments (as far as I know). The PET scan that I get before my next treatment will help the oncologist determine how much longer I'll need chemotherapy.

Next week will be two months since I found out I had cancer. Like many have already told me, getting downsized earlier this year really is a blessing in disguise. I've spoken to several of my former co-workers and things just sound insane there. I don't think working in that stressful of an environment would be good for me. So although I get bored a lot just sitting at home with no job, no one to talk to, and nothing interesting to do (or the energy to do it some days), at least I don't have that to deal with. Maybe by the time I'm done with all this in September/October *crosses fingers*, the job market will have improved some and I can find a good job, hopefully in the marketing arena, that maybe even offers tuition reimbursement. That would be ideal anyways.

Band-aids and popsicles

At my treatment on Thursday, I saw my oncologist, Dr. Fenske and his nurse, Julie again. Julie asked all sorts of questions and I told her about all the different side effects/pains/feelings I had after each of the first two treatments. Nothing I told them about seemed to concern them, which I'll take as good. The doctor suggested I take the lorazepam they prescribed me for nausea for those nights when I'm feeling anxiety and having a hard time falling asleep since it will help any of those issue. They also said my lab tests looked good (liver, electrolytes, etc.). Of course my white blood cell counts were low, but that's expected. They seemed really happy that they could not visually see the cancer in my neck anymore and were also surpised that I still have a whole head of hair. I see them again in a month. I will have one more treatment and a PET scan before then, which will help them determine the progress of the cancer and chemo. I'm really hoping that the chemo will work on me so well that I won't have to have radiation therapy. If I need to, I of course will get it, but I really hope I won't need it.

I did have an issue after the chemo that freaked me out. Normally after the chemo, they put a band-aid over my port where the needle went in. Usually there is no blood or maybe one dot only. Well this time there was plenty of blood. The pad on the band-aid was soaked in blood and my undershirt had quite a bit soaked in as well. It wasn't bleeding anymore but I knew it wasn't normal. I worried the nurse that administered the chemo didn't do something right to "close up" the port or something. I also figured it could have been because of the nurse that put the needle in the port that morning. She missed the right spot and couldn't get blood to return, so she had to rearrange the needle inside my port a few times until the blood flowed. I called the hospital and an on-call doctor contacted me. He said to clean it up and bandage it. If it stopped bleeding then I was OK. If it keeps bleeding more than a little, then I would have to go to the ER because something is wrong. Well, it never bled again, so I just stayed home and hoped for the best. I thought about calling my doctor's office the next day for peace of mind but didn't. That's so unlike me.

This latest chemo treatment has really been taking it's toll on me. The first two days, which included my birthday on Saturday, were OK but not great. Like last time, my taste buds were extremely off. Nothing tasted right, or good for that matter. I drank mostly water those days because nothing else tasted good. Eating was hit or miss. Things didn't taste bad necessarily, just different and very mild. The main flavor I seemed to be able to taste was salt, so I'm sure I added more salt to things than necessary.

I also started feeling tired out sooner than I did before. After my first two chemo sessions, I started feeling tired on Sunday. This time, I already started feeling it a bit on Friday and for sure on Saturday. On Friday, I was already yawning by 8:00pm but we still went over by Kime & Frank's house and hung out with them and Sacha & Mark. I had a good time - it's nice when I can be out of our house, even if only to be at somebody else's house. On Saturday I slept in and then also took a nap in the early afternoon. I was really feeling tired. My dad, sister and nephew came over to visit for my birthday. We just sat outside in the nice weather and also played a game of ladderball. It was especially nice to see my nephew, since he is now 2 years old and I've only seen him one other time in the last year and a half. It's weird being called "Uncle Mike" because I'm so used to my cousins calling my dad that. Maria's nieces generally just call me "Mikey," although they know that I'm their uncle. Later on after everyone left, my mom and step-dad came over to grill out. I'm sure I was yawning all night, but still had a good time. I ate a small piece of grilled chicken, a huge grilled baked potato and some corn. The potato and corn really tasted good to me, even though I'm sure it was the extra salt I was mostly tasting.

Sunday and Monday were mostly spent with me lying around on the couch, watching TV and occasionally falling asleep. I just didn't feel up to doing anything. I felt the normal "chemo pain" in my body, although still milder than after my first treatment. I was also having really bad mouth pain. One of the side effects of the chemo is mouth sores because of the types cells the chemo kills. I can combat the pain by eating cold things like popsicles, but it still really hurt this time. I don't think I have any actual sores, just pain from the chemo.

Today, I was hoping to feel better than I do. I figured since the side effects started earlier, they might end earlier. While the mouth pain today is minimal compared to the last few days, I'm still really tired and run-down feeling. I knew I had to get to the store for a few basics like milk and bread, so that was my goal today. It took all the effort I had to get dressed and ready to go. At the store, it was really hard to walk around and push the cart. Although I was only there maybe 15 minutes, I had no energy to shop. I'm sure I was walking around at the pace of an elderly person. By the time I got home from the store, I was feeling exhausted. You would think I just ran a marathon. Even sitting here typing this blog post is a challenge. I keep taking short breaks from typing where I just sit back and sit still.

I have class tomorrow night, the first class of my last six-week course for my degree. I really wish it was over already. I already have homework due tomorrow that I haven't yet started. I just haven't been in the mood for school since this whole cancer ordeal began. At least the end is in sight for school, just not quick enough.

The sky is falling! Actually it's just my hair.

So yeah, last week my hair started falling out. I noticed around Tuesday or Wednesday. When I wash, dry or style my hair, I end up with tons of individual strands all over my hands, the sink, the towel, etc. I'm not sure yet what I'm going to do about it. I actually don't mind the fact that I'm losing my hair as much as I thought I would. I guess because I knew it would most likely happen. I also look at it as a normal part of the chemo process. Since my hair is falling out, the chemo must be working. The main bad part is just that it's messy. As mentioned, the hair gets everywhere, so that's annoying.

I'm not a hat guy. I never wear hats, not even baseball caps. I've always been one of those guys that spends more time making his hair look good than others. I guess growing up with a hair stylist mom did that to me. But I don't know what I would look like with no hair. I have a large head so I can't picture a shaved or bald head looking all that sexy, so I have a hat all picked out in the event I lose too much and shave the rest off. I'm at the point where I'm overdue for a haircut. I'm trying to decide if I should have it cut like normal and see what happens, or if I should just get rid of it now. The doctor said I may not lose all my hair, but it may just thin out some. I'll probably try to keep it as long as possible, so maybe I'll get a haircut on Friday.

Other than the hair thing, the last five days or so have been pretty good. I've felt like myself, no real pain or side effects, just all around good. We had a fun 4th of July BBQ with some good friends. I still get worried at night and have trouble falling asleep some nights, but the days have been really good.

Tomorrow is my 3rd treatment. I also get to see my oncologist tomorrow, which I'm happy about because I haven't seen him since the week before my 1st treatment when he told me I was stage 1A and laid out the treatment plan.

My 31st birthday is Saturday. No big plans for going out this year, just taking it easy at home after my treatment. My mom and step-dad are coming over to grill out and have promised to do all the prep and cooking. That will be nice. :)

Love this...

My friend Kristen sent me this humorous cancer related quote by Dr. Jerri Nielsen:

"I would rather not have it, but the cancer is part of me. It's given my life color and texture. Everyone has to get something. Some people are ugly, some people are stupid. I get cancer."

It's 3am... I wish I was asleep...

Yes, I'm really blogging at 3am. I've been meaning to post an update for a couple days now but haven't, so since I was up anyways, I figured I might as well go for it.

So far, the effects of my second chemo treatment have been milder than the first. For the first day or two, I felt fine but I noticed my taste buds were completely off. Nothing I ate or drank tasted normal. For example, I made a pitcher of kool-aid that was very sweet to Maria but I thought just tasted OK. Things that should have been salty or garlicky just tasted bland to me, like they were underseasoned.

Sunday was my tired day again, spent laying around most of the day. Monday too pretty much. I also started to feel a bit of the chemo pains that I experienced last time. I was dreading Wednesday since the Wednesday after my first chemo was one of the worst days of my life pain wise.

Tuesday and Wednesday (yesterday now) I was less tired but more run down feeling. I could feel the chemo pains more but they never got horrible or unbearable, just uncomfortable at times. I think Tuesday was worse pain wise, but still so much milder than the last time. I'm hoping that's a sign that future treatments won't be so painful. The run down feeling has been worrying me because it sort of feels like when you are getting a cold. You know it's coming and there is nothing you can do to stop it. That's how I've felt for a few days now, but really no other symptom of getting a cold. I really need to do my best to avoid getting sick while going through the chemo treatments since my body will not be able to fight off an infection like normal.

That brings me to why I'm awake and blogging at 3am. Well, there is one side effect I haven't wrote about yet because it's probably a bit TMI (too much information) for most people, and not something I normally talk about to friends and family. STOP READING HERE if you really don't want to know about the effects chemo can have on one's ability to go to the bathroom, specifically what I've been experiencing.

Unfortunately the chemo seems to affect a person's bathroom routine drastically and I have been no exception. The first couple days after treatment not much happens in the #2 department for me. I feel the need to go, but it just doesn't happen. Every so often a tumbleweed passes by me. After a few days, the exact opposite happens and I am in and out of the bathroom so often that my mail starts getting delivered there! Eventually things start to go back to normal and then it starts all over again after the next treatment. So things were finally getting back to normal in that department, but I think the stir-fry I ate for dinner last night did not agree with me and I've been making frequent runs to the restroom ever since. I think I fell asleep for a little bit tonight but woke up hot and sweaty and also had to go to the bathroom again. Since I need to make sure I don't have a fever, I check my temperature everyday. The fact that I was hot and had an upset stomach coupled with frequent trips to the potty was concerning to me. I checked my temperature using an ear thermometer, that I'm convinced is never accurate, and it kept coming back in the low 97 degrees, even upper 96 degrees, but somewhat different each time. That seemed low and freaked me out, so I knew I needed to be more accurate and came downstairs to get the oral thermometer. I decided to post this update while waiting for the results. 97.3 and 97.5 degrees were the results of the two checks using the oral thermometer. A bit lower than usual, but it is a bit chilly in here being the middle of the night and all. WebMD says 97 (I'm assuming 97.0) or lower is hypothermia, so I hope I don't go any lower. I definitely don't have a fever which is good. Now that I'm done with this update, I'm going to attempt to go back to bed. Hopefully I can fall asleep as its now 3:52am and I'm tired.

After the second treatment

I got finished with my second treatment about an hour ago. I was nervous before and during the process. The nurse told me that my lab results showed my neutrophil (a type of white blood cell) count was low. She said I may not feel any different though. Besides the standard advice of avoiding crowds and washing my hands, I can also help by eating more protein and eating cooked vegetables instead of fresh. That sucks because I just bought a bunch of fresh fruit and vegetables thinking the vitamins would be good for me. Apparantly the bacteria on fresh produce could make me sick. So I'll need to thoroughly wash what I eat and I'll probably switch to canned and frozen produce unless I know that I'll be cooking it.

Because of this, I'll probably skip the Barenaked Ladies show on Saturday. I will probably go to the No Doubt concert next week since we purchased tickets months ago. I'll just show up right when it starts and leave immediately afterwards.

So as long as you and the people around you aren't sick, I'd love to have friends and family visit me this summer since I won't be going out as much. Feel free to call, write, or text me if you feel like coming around. :)

Catching up before my 2nd treatment

So the last few days have been OK for me. I had some worrysome chest pain on Friday and Saturday last weekend, but I dealt with it as best as I could. Since then, things have been better, relatively pain free. We also bought a new mattress at IKEA on Saturday. It's so hard to know if it was the right one to buy or not, but during the last few nights I've slept pretty good on it. The idea in buying a new mattress was to make me as comfortable as possible during the days and nights when I'm in the most pain. I'd rather not have to spend that money right now, but hopefully it will be money well spent.

I was told that my white blood cell counts would drop about 10 days after treatment, which would have been over the weekend. If they did, I didn't feel any different. Maybe they didn't drop too much. I have a feeling though the side effects will intensify with each treatment I get. So far I've been pretty lucky I think, but it's only the beginning. Here's a list of what has or has not affected me so far.

Nausea: No
Pain: Yes
Tiredness: Yes, but not terribly so
Hair loss: No

Yesterday I went and renewed my driver's license. It expires on my birthday next month and I figured I should go before I start losing my hair. The lump of swollen lymph nodes in my neck is barely noticeable anymore so at least that isn't in the photo like it was at graduation in May. But I already know that every time I look at my license I will think of how I have cancer in that photo. I think there will be lots of things this year that I will remember in the future as "when I had cancer."

Today I will be getting my second chemo treatment. It is also Maria's birthday. It sucks that she has to spend her birthday at the hospital with me, but it's just the way the appointments were scheduled. This weekend we had planned on going to see Barenaked Ladies at Summerfest and to go to the Cedarburg Strawberry Festival, but I'm not sure if we'll make either. I'm supposed to avoid crowds, and I'm really concerned about Milwaukee having the highest number of swine flu cases in the country. I really cannot get sick during this as my body won't be able to fight off the infection. I even worry about catching something from eating at restaurants where other people are handling my food, touching my plate, etc.

It's going to be a long summer at home. Hopefully our friends will come visit, and often! (Hint hint!)

Pain and anxiety

The last couple days have been up and down for me. I never got very sick feeling from the treatment, but I have been feeling its effects in the pain department. The pain, which I'll refer to as "chemo pain" are very sharp pain that hit all of a sudden in random places. They may or may not last very long. One minute I'll be OK, and then all of a sudden I'll feel pain somewhere, like my knee. Then I might feel it in my collar bone, or in my tailbone. Very sporadic and fast. Sarah describes it as feeling like a voo doo doll, and I would agree. It also seems like the pain I get in my back and chest from a herniated disc I have is amplified and occurs much more often. I've been trying to manage but I may need to call the hospital today and see what, if anything, can be done to help the pain.

With the pain from the chemo, pain in my hip from the bone marrow biopsy, plus my normal back pain, and the fact that I'm trying to be careful with the port they put in me, sleeping comfortably hasn't been much of an option the past few days. Monday night ended up being a horrible night for me, maybe one of the worst nights of my life. I just could not get comfortable and then the anxiety struck. I could not stop thinking and worrying about the port they put in me. I kept imaging that I would turn my neck too far or stretch my arm too much and that somehow the catheter tube that connects the port to my vein in my chest was going to come apart and separate. I know its highly unlikely and I'm sure these things are safe, but it's an odd feeling to know that you have something man-made inside your body connected to things. I was awake all night long with fear. I watched as the clock showed how long I had been laying there, trying to get to sleep. Pretty soon, it was after 4:30am and I could see the sky starting to get lighter. I had literally been awake all night, scared. Sometime after 5am I sat up in bed and just started crying. That's when Maria woke up, worried something was wrong. I told her what was going on and she did her best to calm me down. She is always very good at that. Eventually I was able to fall asleep for very short periods. I probably slept for 10-15 minutes at a time and would wake up for a few minutes in between. I knew I was meeting our friend Kim for lunch at 11am, and I didn't want to cancel, so I got up around 9:30am for good.

After not getting much sleep and walking around for a couple hours with Kim, I was exhausted. I knew I shouldn't have trouble falling asleep last night so long as the anxiety would hold off and if I could find a position that wasn't too painful. Maria worked with me for close to an hour last night trying to help me get comfortable. I tried lying in different positions and Maria arranged and rearranged pillows under and around me. Eventually I somehow fell asleep.

I have an appointment to have the port checked tomorrow morning. Hopefully I can keep my anxiety at bay until then. They will most likely confirm everything is fine and I'm going to ask questions about the things that have been worrying me.

Not too bad

It's Monday morning, now four days after my first chemo treatment. I never got very sick this weekend. Besides a couple small things, the biggest side effect seemed to be how tired I was yesterday. I woke up at 8am, but fell asleep on the couch for quite awhile during the day and just generally felt run down. In general, I didn't feel too nauseous which is good. I am supposed to take my nausea medicine for the first three days after chemo and then only as needed. So far I haven't taken it today, and I'm hoping I won't need to. I'm wondering if it will take another treatment or two before I really feel the side effects or if maybe this is a good sign that I'm going to be luckier than most. I still can't believe some of the swelling on my neck has already gone down. It's a nice visual confirmation that the chemo is working, even this early on.

One thing I did struggle with all weekend was pain and just being uncomfortable. I don't think it was from the chemo though. I have a herniated disc in my upper back, which I always am in a constant struggle with to be comfortable. I also noticed the spot where the bone marrow biopsy took place also hurts still and sitting or lying in different positions seem to make the pain more noticeable. I think it even radiates out from there to other areas depending on what I'm doing.

I also felt a little depressed at times yesterday. Nothing major, just an overall sad feeling of the "why is this happening" and "I don't know if I can handle this" variety. I'm trying to remain as positive and optimistic as I can, but I'm sure I'll have more days like that.

Today is going to be a gorgeous day outside it seems. If I feel up to it, which I think I will, I'm going to pick up some groceries and just try to be out while I can. I'm worried that once my white blood cell count drops in a few days, I'm going to be stuck at home alone all summer avoiding germs in the hopes that I don't get sick.

Waiting for the sickness to start

Since getting my first treatment on Thursday, I've been waiting for the sickness to come. So far, it really hasn't. I suspect it may take another treatment or two before I really feel anything. Yesterday I had some feeling of nausea but nothing major. Eating actually helped it go away. I haven't felt very tired yet either, at least not any more than usual. Today, which is the day I expected to really start feeling sick, hasn't been bad. I actually noticed in the mirror that the lump in my neck has already gotten a bit smaller. The doctor said I would see it start to go down pretty fast, within the first week even, but I didn't expect to see it shrinking only two days in.

I still feel a little bit of pain from the port they put in, but pretty much only when I bend my arm or neck certain ways. So far, things are going pretty smoothly, but I can't help but wonder when that will change.

I did get some bad news yesterday from the job I was hoping to get. Basically they loved me and really wanted to hire me but couldn't pay me what I asked for. That sucks, but I guess that gives me more time right now to focus on getting better. It was probably meant to be.

The first chemo treatment

This is how I look today, the first day I receive chemotherapy in my fight against cancer.

I didn't get much sleep last night. After class I made a quick stop at Woodman's for some groceries that will hopefully help over the next few days. I picked up several cartons of chicken stock, two bottles of gatorade, a bunch of frozen juices, and some yogurt. Based on what I've heard from Sarah (who is dealing with Hodgkin's now) and Rebecca (who kicked cancer's ass 12 years ago!) I'm going to want to stick to a liquid diet for a few days. I also knew that I would have a hard time falling asleep so I attempted to make myself exhausted by watching TV and staying awake as long as possible. I ended up heading to bed around 1:15am. Not the best when you have to be at the hospital at 8:00am dressed and showered. I'm assuming I got some sleep during the 5 hours until I had to get up and start getting ready, but it didn't feel like much. I remember thinking a lot during the night about everything, including about how much sleep I wasn't getting.

After a snooze or two, I got up this morning around 6:30am. We left the house for Froedtert at about 7:45am and of course ran into traffic on I-894. When you haven't had to get up fand go to work in months, you sort of forget about things like morning traffic. We probably would have only been about 10 minutes late for my appointment however we were given wrong directions inside the hospital. So my 8:00am appointment to have the port put in probably didn't get underway until at least 8:45am. A few nurses checked my vitals and put in an IV. I found out that I was going to be only lightly sedated - enough to make me calmer but not enough to put me to sleep. At first I was nervous about that, but after talking with the doctor, it made the most sense. I'm sure the dose of Ativan (anti-anxiety medicine) they gave me helped. They injected antibiotics through the IV to help prevent the risk of infection.

This is what the port that will go inside of me looks like.

Once inside the procedure room, I was awake the entire time, talking to the nurses, and was just overall comfortable. I was never groggy or out of it. I couldn't see what was going on, which I appreciated. Most of my chest and head was covered with a blue cloth. I could look to my left and see parts of the room or the occasional nurse or aide that was standing by. The only pain I felt during the procedure was from the needle used to numb the area and the actual lidocaine stung quite a bit. Pretty soon I was already being wheeled back to recovery. I had a newly implanted port near my right collar bone, just ready to get used and abused! They gave me my first meal of the day, a plain turkey sandwich and Sun Chips, and after about an hour, I was free to go.

We only had about 30 minutes before my chemotherapy appointment so we stopped for Maria to get a quick lunch at the 87th St Bistro inside the cancer center. I checked in at the Day Hospital on the 3rd floor of the cancer center. I expected that I would be more nervous than I was. I think that Ativan I was given earlier was really working.

Eventually my name was called and Maria and I were taken to a private room. The rooms have a small LCD TV hooked up to a DVD player, so we rented "Ghost Town" starring Ricky Gervais from Netflix to watch during the process. The nurse hooked the IV machine up to my newly installed port and away we went. First was anti-nausea medications and then the actual chemo drugs. I am getting a typical combination of four chemo drugs known as ABVD. The nurse injected a small dose of bleomycin (if I remember correctly) by hand to test for allergic reaction. Since I was OK, she could then give me the full dose. Three of the drugs were injected by hand by the nurse while the last, dacarbazine, is injected using a drip bag over a 30 minute period. The nurse seemed to enjoy the movie and wants to rent it herself now.

Once all the chemo drugs were dispensed, the nurse flushed my port, bandaged it up and sent us on our way. I am now at home, pretty much feeling OK. The main pain I feel is in my upper chest/neck area where the port was put in. It's pretty hard to turn my neck left or right or look up or down without feeling it. Hopefully that only lasts a few days. I'm still feeling the effects of the bone marrow biopsy from Monday, but it is improving each day.

So tonight and the next few days will be the hard ones. I'm prepared as best as I can to feel exhausted, sick, pain, whatever. I'm hoping I'm one of those fluke patients that don't get bad side-effects, but that's probably wishful thinking.

Let me start at the beginning...

So far the year of 2009 has been pretty crappy for me. I was permanently laid off from my job of nearly six years in February due to the bad economy. I have probably applied at upwards of 30 jobs, mostly all of which I'm qualified for, yet nobody is even calling me for a phone interview. In early May, my severance ran out and I began collecting unemployment. Luckily my wife, Maria, has a good full-time job and we both get our health insurance is through her employer.

Then on May 10th, Mother's Day, I woke up with a giant lump on the left side of my neck. My first thought as I looked in the mirror was "am I getting fat on one side of my face?" That quickly changed as I felt around on my neck with my fingers and found a giant egg shaped lump under the skin. As someone who always fears the worst when it comes to health, I was immediately scared. Right away my mind went to "cancer." It wasn't there the day before as far as I had noticed. (Now weeks later as I look back at photos from the previous week, I can see that I had the lump prior to Mother's Day. I'm not sure how I didn't notice it previously, especially when shaving, but I didn't.)

Pretty quickly I called my doctor's office to see if I could talk with an on-call doctor, but I was connected to a nurse-line. She made it seem that I could wait until the next day to see my doctor, I didn't need to go to urgent care or the ER.

On Monday, May 11th, I saw my primary care physician. He felt around and pressed on the lump in my neck and said it was most likely an infected lymph node. He did not think it would be cancer since that takes time to appear, not all of a sudden like my node did. I got a shot of antibiotics in the doctor's office and a prescription for Augementin XR to begin taking immediately.

The next day I saw my doctor again for follow-up. I knew nothing had changed and he agreed. He said we should give the antibiotics a few more days to see if they start helping.

On Thursday, May 14th, I took my wife to see my doctor because she had a very bad cold and her doctor (at the same clinic) was off that day. My doctor saw my neck and noticed that nothing had changed so he ordered up a CT scan of my neck to see if it was a cyst or something causing the swelling. I went for the CT that afternoon and my doctor called me with the results only a couple hours later. The CT scan showed multiple swollen lymph nodes, including one bigger one approximately 4cm x 6cm in size. The CT did not show them why they were swollen, so he referred me to a general surgeon.

On Tuesday, May 19th, I saw the general surgeon. He did some quick pressing on my neck, as well as under my arms and in my groin - since those are other common places for lymph nodes to swell. He asked questions about pain, night sweats, dramatic loss of weight and other things, none of which I had experienced. He talked to another doctor in the clinic and determined I should have a core needle biopsy to determine the cause. Although he stated that cancer normally shows up over time, not suddenly like I experienced, it was a concern since multiple lymph nodes were affected.

During the next week was when I was really starting to worry it was going to be cancer. The surgeon's words about cancer being "a concern" really made me believe that was going to be what it was. On Thursday, May 21st, I attended the graduation ceremony at MATC. I was nearly done earning an Associate Degree in Marketing, with the remaining two courses scheduled for over the summer. It really sucked that I had this giant lump on my neck for all of the photos of me in my cap and gown.

On Wednesday, May 27th, I went for the biopsy. I heard the doctor performing the biopsy tell someone from the lab that I had one large egg shaped lymph node and two or three that were golf ball sized. He numbed the area where the biopsy was taking place and took five to six samples using a core needle. I was awake during the procedure, lying perfectly still on the table hoping I didn't have cancer. After the biopsy was over, the lump in my neck swelled even larger and for the first time, hurt. Maria and I joked that "they angered it." The swelling went down by Friday and the pain was mostly gone. The doctor that performed the biopsy said results normally take two days, however they have to do some special tests for me, so it would probably be three or four days - after the weekend.

During the week of my biopsy, Maria took off a few vacation days to spend with me and to try and have a little fun. We went on the Miller Brewery tour and ate at Saz's State House which we had never been to before. On Friday, May 29th, we went to the Racine Zoo. We're such animal lovers and we enjoy going to different zoos. We we're having a great time. Our day at the zoo was almost over when I got a call from the surgeon. I put my cell phone on speaker so Maria could listen as well. The results of the biopsy were in. I had Hodgkin's Lymphoma. CANCER! I started sobbing immediately. All I could say to the doctor as "OK" to everything he told me. He did say that Hodgkin's has a high success rate and that my cancer is in a very treatable location. He was going to refer me to an oncologist. Because it was Friday afternoon, I wouldn't hear anything until Monday. Maria just held me in her arms while I cried in the middle of the zoo. I also cried all the way out of the zoo, most of the walk back to the car, and for a few minutes in the car.

We were already planning to stop by my mom's work after the zoo so Maria could get a haircut. I knew I had to tell my mom right away. I didn't want to tell her while she was working but I knew that there really isn't a good time to tell your mom that you have cancer. On our way from Racine to South Milwaukee where my mom works, we stopped at a gas station for something to drink. My throat was sore from all the crying I think. I cried again in the car in the gas station parking lot. On the drive over, I used my phone to look up Hodgkin's Lymphoma on Wikipedia.

When we got to my mom's work, we sat in the car outside for a few minutes. I was trying to decide how I should tell my mom or if I should wait until she has a day off. I knew she had to continue to work all night and probably had to work the next morning, but I couldn't wait days to tell her. My mom took Maria to the back to rinse out her hair and I walked back there and told her by the shampoo sink. It was probably the hardest thing I've ever had to do. My mom started crying immediately, as did I. My mom called her husband and I told him the news as well. I told them both about what I had read online about the high success rate of treatment.

Once we left, I knew I should tell my dad next. He was at home so we drove straight there. My sister and her boyfriend were there along with my nephew who I hadn't seen in over a year. I didn't really feel comfortable telling everyone, especially since I rarely see my sister and nephew as is. I didn't want to ruin those few minutes we had together. After they left, I told my dad. He didn't cry and neither did I. He reacted about the way I expected. I think he said "this sucks" if I remember correctly. We ended up having a late dinner with my dad that night and talked about all sorts of things, not just cancer. It was nice.

Throughout the rest of the weekend I began telling family and friends the bad news. Some conversations were harder than others for whatever reason. For some people, I started crying when I began saying the words "I have cancer." I told some people in person, some over the phone and some via email. There are people I know that I still haven't told. At one point, Maria told me I had to stop telling people over the phone and switch to email because I was too upset and it was hard to deal with.

On Monday, June 1st I was anxious to hear from the surgeon. At this point everything had been through Columbia-St.Mary's, which is where my primary care physician is through. However, over the weekend I decided I wanted to go to the new Clinical Cancer Center at Froedtert Hospital. I've always heard good things about Froedtert and this new cancer center sounded like a nice place to receive treatment. I wasn't sure if the surgeon could refer me or if I had to start the process myself. I left a message for the surgeon (who was in surgery - go figure). I did get a call from the oncologist's office at Columbia-St. Mary's. She explained things to me and let me know that I would need to contact Froedtert myself to get things started. So that's what I did.

Throughout the week I dealt with anxiety and had a few minor panic attacks. I was so scared that the cancer had spread all over my body and that I was going to die. I didn't think that all day every day, but I did constantly think about the cancer in general.

On Thursday, June 4th I went to Froedtert for tests. Maria, my mom and step-dad all came along for support. I had blood drawn, a PET scan and a CT scan. It was a long day. I had to be done eating breakfast by 7am and couldn't eat again until after the tests, which ended up being around 4:30pm. The scans themselves are pretty easy, just time consuming. The scary part to me is all the radiation. For the PET scan, they injected radioactive stuff into my I.V. and of course a CT scan uses radiation to do what it needs to do.

I wasn't sure how much sleep I would get that night. I anticipated being too nervous or panicky, but I think the long day of tests really wore me out.

My first appointment with my oncologist was scheduled for Friday, June 2nd at 11am. I was very nervous and anxious. Of course they were running late. I probably got called in from the waiting room around 11:30am. Maria came in with me, while my mom and step-dad stayed in the waiting room. The nurse practologist was actually the one to give us the best news we could have hoped for - the cancer had not spread and is only located in my neck. She called it Stage 2 because multiple lymph nodes were affected. She talked to us about treatment and the side effects of the cancer drugs, ABVD.

After the nurse practologist, my actual oncologist came in. He checked out a few things and reiterated some of what the nurse said. He said that my cancer is stage 1A. The "A" means I don't show any of the symptoms of cancer. He said it may or may not be considered "bulky" due to the size. I asked him why he said it was Stage 1 when the nurse said Stage 2. He explained there isn't much difference between the two in my case because the affected lymph nodes are all one big mash. He said I could look at is as Stage 1A/2A.

He discussed treatment further and said the best plan for me is 3-4 cycles of chemotherapy (a cycle is actually two treatment sessions spread apart) followed by radiation therapy. So basically I will have chemo every two weeks for 3-4 months. I also need to have more tests done prior to starting treatment. I will need a bone marrow biopsy to ensure the cancer did not spread into my bone marrow and I will also need a MUGA scan to ensure my heart is healthy enough to receive chemotherapy. I also asked the oncologist about working during treatment as I think I'm close to being offered a job finally. He didn't seem to have a problem with it, the job may just have to work with me around treatments if I need time off to rest or be sick.

The rest of Friday and that weekend I was very relaxed. I almost felt as if I didn't have cancer. The results on Friday were just so relieving. Maria and I went out with friends on Saturday night to eat and drink, since my summer will be pretty sucky.

This past Monday, June 8th, I had the bone marrow biopsy and MUGA scan. The biopsy is not pleasant and I hope I never need one again. Although they numb the area well, they are basically attempting to get blood and bone marrow from inside your hip bone. The nurse practologist struggled a bit with me because I have hard bones. Good for me but bad for her. After the numbness wore off, that whole area hurt like hell. It hurt to walk or sit, but I managed. I even felt pain in other areas that I didn't previously. Even now a few days later, I still feel it, but not nearly as bad. It's definitely improving. The MUGA scan was easy in that it was just more lying still. The bad part is more radioactive stuff is injected into you. This time they took blood out, added radioactive material, then injected the blood back in.

Last night I began reading a book, recommended by Sarah, a new friend that is also dealing with Hodgkin's Lymphoma and chemotherapy treatments right now. The book is "Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s" by Kairol Rosenthal.

So tomorrow is another big day. Tomorrow morning I will have a port put in that they will use to draw blood from and to facilitate the chemotherapy without having to stick me with needles and put in I.V.s every time. It took them FOUR times on Monday to find a suitable vein for an I.V.. That was a nightmare. Even though the thought of having to go under and have this port put in scares me, it will be much easier for all the treatments and blood work I will be having. Tomorrow afternoon I am scheduled to receive my first chemotherapy treatment. It should last around four hours. They will purposely make slow down this first treatment to help ensure I accept the drugs OK. Future treatments should take about three hours.

So today, the day before my first treatment, I do worry I will be in the small percent of people that treatment doesn't remove all of the cancer. I'm worried about the side effects of the chemo drugs, especially on my heart and lungs. I'm worried that the cancer will return or another form of cancer will show up later on. But at this point all I can do is hope for the best. I know I have a good support system around me and many family members and friends that are also hoping for the best.


A special thanks to my friend Jada for encouraging me to write this blog. She may be the only one who ends up reading it, but hopefully it will be an easy way to keep friends and family updated. I could just post my feelings on Twitter or Facebook for everyone to see, but I think I'd rather keep this separate.