The Light The Night Blues

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

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

It's not too late for you to donate!

Still cancer-free

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

And now onto some random cancer related thoughts...

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

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

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

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

A long, overdue update

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

The end of treatment.

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

My radiation mask

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

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

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

Eleven down, six more

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

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

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

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

An unwanted change

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

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

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

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

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

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

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

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

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

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

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

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.