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.