Treatment 5

Thanks for all the comments everyone !! Ryan, send me your email or something so we can catch up. Long time no talk. Do you have a facebook page or anything?

Anyway, treatment 5 done and over with. Rachel (sister) was here for an early Christmas and it was good to see her. Sarah made a great Christmas dinner with all the trimmings. She also got me a nice new razor for shaving, a good book (The Last Lecture), a couple snowboard vids (wish I could ride) and a level, ya know for hanging things and stuff. Thanks babe !!! You're the best and I love you.

Overall I didn't feel too bad this weekend. Nausea was in check. Just the usual tiredness. Still feeling it today too. It's totally freezing here also. Below zero with wind chilll I think. Not a lot of snow. Just cold. Anyway, not a whole lot of news to report. Just maintaining and looking forward to spring and to be done with all of this :)

Achy

The Neupogen shots make my bones hurt. Oh well, I guess they are working to stimulate my WBC production in my bone marrow. I am feeling better today but still tired. No nausea which is good. Holding off on the house hunt for a few months until it's closer time to get out of our apartment and until I get a little better. I was getting a bit stressed about a house but now I just need to chill. Just trying to be thankful and relax.

Tired

Well I got some new pills (Decadron) for the nausea and they seemed to help over the weekend. However, my level of fatigue was ridiculous. Saturday I could barely function. It's getting better but I'm still exhausted. I also am getting shots (Neupogen) Friday through today to boost my white blood cell counts because they are so low. I really need to watch out for getting sick. Not much else to really talk about other than being completely exhausted for the past few days. Back to work this week and trying to stay positive and motivated. It's tough though. Looking forward to feeling better this week and getting a Christmas tree this weekend !! Maybe even look at a house or two !!! We'll see.

It's my Birthday !!

It's my Birthday and I'm at work. Going to Mom's for dinner and cake. Should be a good evening.

So anyway, Thanksgiving was nice and I was well fed. Sarah and I went to a Cleveland Browns game on Sunday and they lost of course, not that I really care. Go Pats !! Anyway we had suite seats at the 50 yard line thanks to one of Sarah's connections through work. It was really nice...food, open bar, great view. Wish I could have had a couple beers though.


Tommorrow is treatment #4....1/3 of the way through. Hopefully my blood counts are good so that I can receive the treatment. Slowly but surely I will get through all this. More to follow.............

Back to work again

Well it's Monday and I'm back at work and still feeling a little crappy. Four straight days of being nauseas and completely tired is not fun. I hope it doesn't get any worse. I am going to ask the doc if she can give me some stronger anti nausea medicine. My hair is starting to come out a little too. That sucks. BLAH !!! Short week this week though and looking forward to some good Thanksgiving food !!

Treatment 3: 11/20/08

Not much to report about the most recent treatment. Same old same old. My blood counts are pretty low, especially my whites so I need to keep an eye on my health and not get sick or get any infections and such. Just taking it easy today and resting. Nausea isn't too bad right now thankfully. We got a bunch of snow last night and today so I am excited about that.

I got a surprise this morning from Ed and everyone at Piecasso. Ed actually really delivered me a large pizza overnight via UPS it looks and smells great and I can't wait to try it shortly. I was very surprised to say the least. I really have a craving for pizza after my treatments so it was a welcome surprise. Thanks to Ed, Sarah, Leo, Pat, Jonathan, Stacey, Walter and the rest of the Piecasso crew. This place seriously has the best pizza so if you are ever in Stowe Vermont stop by the restaurant.

Thanks

Thanks for the comments everyone. i really appreciate it and it means a lot to know I have such great friends and family. Hope you are all well and be thankful for all your blessings !!!!

2nd Treatment: 11/06/08

Well it's Monday after my second treatment. Everything went pretty well again during the treatment and they even had tea and snacks for us. Apparently they have "tea time" every first Thursday of the month.

So anyway, Friday I felt ok in the afternoon and decided to go into work for a while. I don't know if that was a good idea or not because I spent most of the entire weekend completely exhausted. The nausea wasn't too bad but I was so tired I could barely do anything.

My blood counts, both white and red, are down a bit and that's probably why I am so tired. The low white counts make me much more susceptible to infection. Gotta make sure I don't get sick. One good note, I still have my hair. We'll see if that lasts or not.

Sarah and I did go to the Leukemia and Lymphoma Society's Team in Training meeting on Saturday. From their website......"The Leukemia & Lymphoma Society's Team In Training® is the world's largest endurance sports training program. The program provides training to run or walk marathons and half marathons or participate in triathlons and century (100-mile) bike rides. Since 1988, more than 380,000 volunteer participants have helped raise more than $900 million.......to raise funds for leukemia, lymphoma and myeloma research and patient services".

The first event is the Cleveland Marathon in May and I am really excited to participate but I don't know if I am physically able to devote myself to training for such an event. Maybe later next year I can train for the Akron Marathon. We'll see.

Daydreaming............I wish.

The "Hodgkin's Itch" has not gone away as I experienced a bout with it last night. It goes like this.......Wake up itching...........notice sweat on pillow from neck/chest area..........continually scratch itchy neck, chest and arms for 15-20 minutes and try to fall back asleep.

It's an itch that cannot really be scratched as it is not really epidermal in nature. Doctor's of course really don't know why it occurs. The chemo is supposed to get rid of it.

Back to work.

Well it's back to work today after a nice 4 day weekend. Well I shouldn't say nice because for the majority I felt at least a little nauseas and tired. Threw up on Saturday after I removed my bandage from the lymph node biopsy. Don't know what happened there.

The nausea was pretty steady and mild until Saturday when it subsided a bit. I am not taking the Zofran regularly unless I feel something coming on. That stuff makes me really tired I think. My appettite is quite erratic but I hope it gets better as I am sick of eating pizza and cereal (did I really just say that?). Actually I am craving pizza right now. Pizza is good. Ed if you read this you need to send me a large pie. Go see Ed's website for his restaurant Piecasso.

I did however go out and do normal everyday stuff so the outcome for future chemo treatments seems good. I hope. Check this pic out. We got free gas this weekend because our local grocery store gives "fuel perks" when you spend money at the store. Sweeeet !!!!

The day after.

Well everything seemed to be going pretty well yesterday other than being really tired. Not sure if it is from the ABVD or Zofran (anti-nausea medication taken every 8 hours) or both. I didn't really start to feel sick until about 9 or 10 last night. The nausea wasn't real bad but just a little annoying. The worst part of it all was that I couldn't sleep. My brain just wouldn't slow down all night so I got up and watched t.v for a while and was able to fall asleep. However I woke up when Sarah used the bathroom and then I couldn't go back to sleep again until about 4 a.m. The culprit of the insomnia I believe is the decadron (?), which is a steroid they gave me to prevent nausea. I hope I don't have any more issues with insomnia. Needless to say I am not going into work today. Just gonna take it easy and recuperate. Fortunately the nausea is not around right now.

First Treatment

Sarah and I got here at 8 this morning and checked in. The nurse said my heart beat was a little fast.... hm, I wonder why? So anyway, everything is going smoothly. I came in, got some blood drawn and spoke to the doctor. After a short wait they brought me into the treatment area and got things rolling.

Well it's about 11:00 a.m now and I am getting my first treatment.

When I first came in I asked the doctor about getting a port which I had read about. Go to the link.....doesn't look like fun to me. Hopefully I can stick with the regular IV. Ha....get it ? stick.....ha ha. She said I don't really need a port but we can see how the first treatment goes and I can get it if I want. I had read that it makes it much more convenient and less painful to draw blood and receive treatment with a port. However, I really don't feel like going under the knife again.

First they ran some saline into me for a little while and tested out a small dose of bleomycin in my arm to see how I would react to it. Apparently the bleomycin can cause respiratory problems. So far so good.

First in after that was the adriamycin. It is a red Kool Aid color and is slowly "pushed" into the IV. Next up was the vinblastine which was administered in the same fashion. Right now I am receiving the dicarbazine which takes about an hour and is diluted with saline to reduce discomfort. Often this drug can cause pain and discomfort in the arm. Again, so far so good. When this is done I will receive the final medication, the bleomycin. The order in the future however will be ABVD.

Overall everything has gone great. Everyone is very nice here and they are very thorough and professional. One nurse did bust on me about my Red Sox hat though. The treatment area is nice with my own t.v and access to snacks and drinks. Not to mention I have my own "nurse" - Sarah. Not bad huh? I am anxious to see how this medication is going to effect me though. I'm a little worried about that.

Some bad news today though that I almost forgot about. The doctor said that the tumors all added up, are close to being categorized as "Bulky". Bulky disease is any cancerous lymph node or extranodal tissue that measures greater than ten centimeters in any dimension. This means that after chemo I will have to go through a couple weeks of radiation also. Arrgghhh...................oh well, let's just do what we need to. Check back soon to find out how all this medicine makes me feel. Thanks for reading.

Sequence of events............

Ok, so in order here is what I went through up until my first treatment:

August 29th - First doctor visit and blood test.

First week of September (can't seem to find the date) CAT scan.

September 17th - PET scan.

September 26th - First visit with oncologist and blood test.

September 30th - Appointment with Ear, Nose and Throat Doctor that will perform an incisional biopsy of my lymph node.

October 1st - Lymph Node Biopsy (outpatient, general anesthetic) A lymph node biopsy removes lymph node tissue to be looked at under a microscope for signs of infection or a disease, such as cancer. Other tests may also be used to check the lymph tissue sample, including a culture, genetic tests, or tests to study the body's immune system (immunological tests).

October 3rd - Diagnosed with Nodular Sclerosis Hodgkins Lymphoma

October 6th - Bone Marrow Biopsy (outpatient, local anesthetic) - This was not fun.

A bone marrow biopsy is the removal of soft tissue from inside bone. The skin is cleansed, and a local anesthetic is injected to numb the skin.The biopsy needle is then inserted into the bone. The center of the needle is removed and the needle is moved deeper into the bone. This creates a tiny sample, or core, of bone marrow within the needle. The needle is then removed, along with the bone marrow sample. Pressure is applied to the biopsy site to stop bleeding, and a bandage is applied.
An aspirate may also be performed, usually before the biopsy is taken. After the skin is numbed, the aspirate needle is inserted into the bone, and a syringe is used to withdraw the liquid bone marrow. If this is done, the needle will be removed and either repositioned, or another needle may be used for the biopsy.

October 10th - Second visit with oncologist to discuss treatment.

October 13th - Pulmonary Functions Test
Pulmonary function tests are a group of tests that measure how well the lungs take in and release air and how well they move oxygen into the blood.
In a spirometry test, you breathe into a mouthpiece that is connected to an instrument called a spirometer. The spirometer records the amount and the rate of air that you breathe in and out over a period of time.
For some of the test measurements, you can breathe normally and quietly. Other tests require forced inhalation or exhalation after a deep breath.

Pulmonary toxicity, or lung damage, can occur with the use of bleomycin in ABVD, especially when radiation therapy to the chest is also given as part of the treatment for Hodgkin's lymphoma. This toxicity develops months to years after completing chemotherapy, and usually manifests as cough and shortness of breath. High concentrations of oxygen, such as those often used in surgery, can trigger lung damage in patients who have received bleomycin, even years later. Pulmonary function tests are often used to assess for bleomycin-related damage to the lungs. One study found bleomycin lung damage in 18% of patients receiving ABVD for Hodgkin disease. Retrospective analyses have questioned whether bleomycin is necessary at all; however, at this point it remains a standard part of ABVD.

Cryopreservation 1

Infertility is probably infrequent with ABVD. Several studies have suggested that, while sperm counts in men decrease during chemotherapy, they return to normal after completion of ABVD. In women, follicle-stimulating hormone levels remained normal while receiving ABVD, suggesting preserved ovarian function. Regardless of these data, fertility options (eg sperm banking) should be discussed with an oncologist before beginning ABVD therapy.

October 16th - Cryopreservation 2

October 17th - CAT Scan

October 21st - MUGA Scan

A MUGA scan (Multi Gated Acquisition Scan) is a nuclear medicine test to evaluate the function of the heart ventricles.

Cardiac toxicity, or cardiomyopathy, can be a late side effect of adriamycin. The occurrence of adriamycin-related cardiac toxicity is related to the total lifetime dose of adriamycin, and increases sharply in people who receive a cumulative dose of more than 400 mg/m2. Almost all patients treated with ABVD receive less than this dose (for 6 cycles of ABVD, the cumulative adriamycin dose is 300 mg/m2); therefore, adriamycin-related cardiac toxicity is very uncommon with ABVD.

Cryopreservation 3

Ok. So now you are probably wondering what adriamycin (doxorubicin), bleomycin, vinblastine and dacarbazine (ABVD) is right ? Well it is the chemo treatment that I will be having starting on October 23rd. Follow this link for a more detailed explanation of the drugs and procedure. I will have to say I am a bit nervous about the effects of the treatment, but I will just have to wait and see how it goes.

I am initially scheduled to receive 6 cycles of treatment (one treatment every two weeks for 6 months totalling twelve treatments). Progress of the tumors will be monitored throughout. Lets pray it doesn't take that long. Stay tuned for an update after my first treatment.

The beginning...

Well it all started sometime in mid-August 2008 when I awoke one morning with an enlarged neck right in that hollow under my Adam's Apple. I asked my wife Sarah, "Did I get fat overnight ?". So I gave it a few days and it didn't go away and I started noticing a little tenderness just above my collarbones. So I went to the General Practitioner just down the way here to get it checked out. He felt my neck and I discussed my symptoms, which included:

1) Swollen Neck
2) Tenderness above collarbones that got progressively more noticeable
3) Pretty bad neck and shoulder pain for the previous month (which went away and to which I blame on ergonomics at my new office)
4) A feeling of blocked blood flow to my head when I raised or moved my arms a certain way (which I attributed to swelling in my neck, thus inhibiting blood flow to the head ?)
5) A little short of breath when making similar arm movements


So the doctor said, "Hmmmm.........Hmmmm..........that's interesting". The nurse takes some blood and the doctor decides to order a CAT scan for me to see what was going on. So I went to get the scan a few days or maybe a week later and by that time my supraclavicular lymph nodes had gotten considerably larger especially the left, or Virchow's Node.

So the results come back and the doctor says, "Well the results show enlarged lymph nodes". No sh*t sherlock. So he decides to order up a PET scan for me to further investigate.


I would like to say also that this doctor and his staff were very lazy about telling me about my test results. I had to contact them, and when my PET scan results came back the receptionist said, "We have your results but the doctor is on vacation". I was pissed to say the least. Luckily someone contacted me later that day with the results.


So the results of the PET Scan indicate, "a lymphomatous change". I think, ok whatever that means. So they refer me to a hematologist at the Ireland Cancer Center at Southwest General Hospital in Middleburg Heights Ohio. Ok so now I am a bit worried and thinking the worst, like oh great maybe I have cancer.

So my first appointment with the hematologist/oncologist goes well. She and her staff are very professional and nice. Based off the scan results she says it is probably lymphoma and that we need to do some additional tests. So here we go with the run down of tests leading up to my first treatment...........ready ? Here we go...........