The iggy on how I feel

Well, it's the midpoint between treatment #2 and #3 and I feel fine. I would say that I had all of the other symptoms under control this time. Save for the hair falling out, nothing new to report. "Hot Wing Mouth" disappeared Monday night along with any mild nausea and fatigue. The early numbers are looking good on how I feel between treatments. I am off to go look like this cat now. Save for his mad-stylish fur (said with envy).

Hair today, gone tomorrow...

The "hot wing" mouth symptom and some light nausea was all I had been experiencing during the 5-7 days post treatment 1 and now treatment 2. Yesterday, when I got to work I noticed my shirt looked like I had just gotten a haircut. I dusted it off. 15 minutes later it looked the same (beard and scalp both). I expected it to happen, weird that it happened almost all at once :)

I still have hair, but I decided to shave it off. Pics below:

Blogging live from Treatment #2

I have dreamt of this. Wi-fi access from the Infusion Therapy Center in Winchester Medical Center. I was able to connect and all is well. I will make some live updates to this post throughout the morning.

11:10am ET: Whitey was 2400 today after being 1400 Friday, so we are all systems go. I have gotten the Adriamycin, Vinblastin and a few flushes. Showed all the nurses my blog and they liked it. They also advised that, going forward, they will go through treatments regardless of White counts and then react with Neupogen or Neulasta if I get sick and get fevers. I am fine with this. Wife went to get her laptop and some documents. This place is filling up, people are dying to get in here (pun).

12:30pm ET: HUNGER anyone?

1:30pm ET: All but done. Mouth feeling mad metallicy. Getting hungry. All is well though. Wife sitting next to me. Both of us have our laptops open and we look like a couple of mooks.

2:30pm ET All done and home. Mouth feels like it is on fire from the Dacarbazine, but all else is fine. 2 down, 10 to go. 4 more before I get a status PET scan and see how things look. Peace out for now.

Small world

So me, babers and my folks decide to take the baberszzzzz out to the Clark County Fair (in VA) yesterday. It was a beautiful day and the kids were unbelievably calm and chill. We had the best time. The boys really enjoyed the demolition derby. Anyways, on our way out, we ran into my Oncologist, Dr. William Houck. He apparently owns a farm and supports 4-H and sits on the School Board. All of this in addition to fixing my deal. He was unbelievable with his time and we discussed everything from treatment to the kids. Everyone in the office knows me as the jackass with 5 kids all under the age of 26 months old. Here is a picture of my pigs in their strollers.

RRRRR........

Low white blood cell counts (~1400) have postponed my treatment until Wednesday. RRRRRRRRR.....

Anyways, I shouldn't have expected it to go 100% smoothly and have heard of similar stories from others. Sanban had strep which put her on hiatus.

The funny thing is, I don't feel bad nor do I feel sick or a cold or anything coming on (knock on wood). I would have thought I could tell. This past week, I felt as good as I did before my first treatment.

RRRRRRRRR....

UPDATE:
I think my doctors are playing it safe inre to side affects or secondary cancers. They went for 6 cycles of ABVD over a combo of ABVD and Radiation taking the increased risk of recurrence over the risk of secondary cancers developing. They are now holding off on Neupogen due to some known interactions between it and Bleomycin. I think I get the theory, and hoping it's right.

Take 2 is Weds in the middle of the week.

2nd treatment <36 hours away

My Second treatment is Friday at 8am and I feel great right now. For the past 6-7 days I have had no side affects and not even the hint of nausea. I also hope to be out of there by noon this time (if not before). I have gotten a lot of tips on what to eat and what otc meds to take to keep me regular (TMI, i know). So I am ready for this one. PLUS, I have ordered a couple of shirts with the caption from my blog. I can't wait for it to get here and I am pretty psyched to have a "chemo shirt".

Leukemia and Lymphoma Society

I just got an answer to a question I sent the Leukemia and Lymphoma Society inre to the difference stats on recurrence for someone treated with ABVD only and those with a combination of ABVD and radiation. I got a quick response with the following:

"The type of treatment that a patient receives also has an influence: for example, 13% of patients with a favorable presentation who are treated with ABVD alone will relapse, versus 6% of those who receive ABVD and radiation."

They also provided a wonderful link to a Q & A done with Dr. G in Toronto. She is the Medical Director of the cancer program at Prince Margaret Hospital in Toronto.

While this at first would seem to favor dual treatment, the link goes on to mention that their control rate for the study was lower and the negative side affects of radiation inre to secondary cancers (specifically radiation outside of a small area).

So any confusion I had on whether "I" would prefer the dual treatment (possibly short chemo with low dose radiation afterwards) or just chemo, has been cleared up a bit. I prefer solo chemo jones, which is what I am getting. For anyone out there with Hodge and didn't know, the LLS has great resources. From information to questions to ask your Dr., to Co-pay Assistance.

Blogger Friends

While searching for blogs about Hodgkin's and ABVD, I found a couple of good ones and a lot that were disco'd due to remission and other reasons we won't speak of. The disco'd ones were usually atleast 2-3 years old so the fresh ones are great. Some are going through reoccurrences, some are in remission and some are relative newbies like me. I was particularly interested in their stories about the treatment and have got progressively more interested in their lives. Duane over at Journal of a Prizefighter is like the grandfather of them all. He has gone through multiple reoccurrences and is prepping for a bone marrow transplant right now. Keep him in your thoughts and check out his blog when you have the time. He has ton's of Hodge info and blogs listed on the left. I also ran into Sanbandit's over at Sanbans Lymphorama. She is in the middle of ABVD treatment so her info and experiences are extremely fresh. Finally, Kelly from Chemopalooza. She has just recently completed treatment and is in remission. How great for her. Now she is making the transition back to normalcy and can guide me on the post-treatment life of follow up checks and scans with her wonderful New England wit.

Otherwise, we are having a quiet weekend with the kidos sans a slight poo disaster this morning and my parents in FLA . They had scheduled a vacation prior to my diagnosis and were hedging on whether to go. I would hear nothing of it and forced them to go. It has worked out and they are having fun. The In-laws have been helping out and doing a great job. We will be heading down to the Outer Banks (NC) the end of September for our little vacation. In fact, my chemo treatments were worked around it ;) Now if I can just work my treatments around a Vegas trip later in the year...

...BTW, did you see my new banner. Courtesy of Babers and her blogo-friend Stefanie B. over at Triple Take. Stef does great work and both share a passion for photography/photoshop/etc. Anyways, my blog is starting to take shape and looks less like the back of a napkin.

1st Treatment

Ok, so I wasn't really ready for this. I chose Friday's as my treatment days so that I would have the weekend to recover for work on Monday. I have/had every intention of working through this and also not being a complete leach on my family. Even with help (my parents, in-laws and an au pair) raising five kids under the age of 25 months isn't easy. My wife is planning to attend each treatment with me, which is nice, especially after what we saw :)

We got to Winchester Medical Center (where my Oncology Group's office is) around 8:30am on Friday August 3rd. The first thing we do is get my blood drawn from my kick ass port. That reminds me, I didn't tell you about the port. In order to receive treatments, you need to either a) get an iv each time you go, b) get an external port or c) get an out patient operation for an internal port. A is problematic due to chemo destroying your veins. It also means you get stuck each time and you bruise, etc. B means that you have wires sticking out of your chest and this can get in the way and leave you open to infection. C is cool. Check out these links. They cut you open, insert a drum with a membrane for accepting needles in and then fish a tube into your subclavian vein (named so because they are just below your clavicle). It's called a medi-port and it rocks.

So we are getting my blood drawn and this is the first time I see a infusion treatment area. OMG. Due to the logistics of nurse to patient ratios, I understand why this needs to be an "open bay" type area like a prison hospital. But man is it depressing to go in there an see 20+ other people (mostly elderly) going through whatever number treatment they are on. Some have family with them, most don't. The you see the occasional teenager and it just breaks you up inside and makes you wonder about their story. If you ever feel you have it bad, ten minutes here will change your mind.

Not me and my wife Babers McSchlabers. We are like Shecky Greene at the Catskills. Joking around and grab assing the entire time. We get the blood drawn and then go back for a consult with our Oncologist, Dr. Houck (the elder). This man is what everyone would want there grandfather to ever be. Nice, calm, intelligent and caring. He gives us great information, including that piece about being non-symptomatic, and then we head back for treatment. My port is plugged back in and the following occurs:

- Aloxi with an Ativan kicker. These are mostly for nausea (antiemetic) but the Ativan is also primarily a sedative. It wouldn't be until the treatment was over that I could say that they worked.

- Test dose of the "B" in ABVD. Bleomycin can cause allergic reactions so they dump a little into you and wait to see if you get blown out. I didn't, so we proceeded. BTW, you really get "in tune" with your body when someone says, "Let me know if all of a sudden this makes you have trouble breathing or you start feeling like you are on fire". Something tells me I would like to make them aware of that as soon as possible, so all of a sudden I become sensitive to any and all minor changes in temp, light, heart rate and motion. (5-10 mins)

- After every dose of a medication, they flush the port with a drip of a saline solution. (5-10 mins).

- Now we are ready for the deal. The "A" is adriamycin (which is an antibiotic but also screws with the DNA of CHL tumors). It, like all of these drugs, is a mo-fo. It can cause nausea and will more then likely cause me to lose my hair. It is also the main reason I had to go get a MUGA scan done on my heart prior to starting chemo. Some long term side affects of adriamycin are heart problems. I should get about half the dose cardiologist deem toxic, but the MUGA gives them a baseline prior to treatment and will be reconciled with a post-treatment scan to determine if my ticker is "sucking hind tit" as a result of the "A". It looks like red cool aid and takes about 15-20 mins to pass through my system in the form of urine (now the color of cotton candy).

- Flush and we are now ready for Vincent. Vinblastine is the "V" and it is an anti-miotic which means it keeps cells from growning or something. Read for yourself. This is sweet, in so much that it is a small little dose that is "pushed" and not "dripped". My rocking nurse Kay swings by and plugs a plastic needle deal into the business and then, slowly over three minutes, pushes about 6mg of this stuff. So far, so good and I am not feeling sick, but I am feeling hungry, it's close to noon now.

- My cohort, the afore mentioned Babers, makes a Subway run and returns with my request of a Salami and Cheese sandwich, some Doritos and a Large Diet Coke. Although my taste buds are in the dirt, it hits the spot. Just in time for the "D". Dacarbazine or DTIC is the biggest of the mo-fo's apparently. It's the cytotoxin (or cell killer) that is so potent, they have to dump it into an IV bag of fluids and drip it over a long period of time (1 hour). It is at this point I was advised that THIS is the drug that causes the most nausea. Salami and Dorito's anyone? Although I feel a little rumbling in my tummy, the grub stays down. I could tell that the others in the room were all thinking the same thing....rookie.

- They finally get around to dumping the rest of the "B" back in me and it is a day. It is now 3:30pm and time to go home. I feel a little sick to my stomach, but not barfing. I have peed about eight times and I am a little beat. I feel surprisingly decent and I went home, took a nap and ate normal.
That would be a good sign for the weekend and a good start to this. My crank wasn't in the dirt and I was able to work the next week without issue. I developed some mouth issues that resulted in me having felt like I had just eaten a hot wing ALL THE TIME for three days. But it passed. I also itched like a crackhead in bed one night, benedryl took care of that. Otherwise, treatment #1 is done and I am now caught up to real time with this blog. Here on out, it is live.

BTW, I saw the doctor this morning inre to those mouth issues and the crackhead itching....the tumors in my chest were all over and in one particular spot (behind my left clavicle) on my first visit he could palpate it. I know, because I touched the area and was amazed that I didn't notice it. The spongy stuff wasn't supposed to be there and it wasn't on the other side of my body. Based on the CT and PET scan and by them touching it, they explained that it was the top left portion of the tumor. Today, it wasn't there. It is not uncommon with ABVD for there to be no signs of the cancer by the halfway point in the treatment. They still continue with it, but a midway PET scan is done after 3 sessions (6 visits in total). To have been able to see/feel a change this quick though, was WONDERFUL. Check out my scars:

The Diagnosis Caper

Since this past Fall, I have had a cough that would not go away. I always rationalized it as coming off of a cold and, God knows with five kids in the house, I always seemed to have a cold. This June, it got out of hand and was causing me to lose sleep. I went to an E.N.T. and she did a basic check up and said that it could be asthma or my blood pressure medicine (ACE inhibitors can cause chronic dry coughs). Since there was no fever and my lungs sounded fine, they didn't do a chest x-ray. Over the weekend I somehow got a fever with some chills. It went away quickly, but my old lady freaked and forced me to have the E.N.T. order a chest x-ray. That would be the beginning of they found out I had Hodgkin's Lymphoma.

The chest x-ray showed clear lungs but a mass in and around my aortic arch. I was handed back off to my Primary Care Physician (Dr. Joglekar) and ordered to get a CT scan on a Friday. Within hours after having the procedure completed, my cell phone was blowing up from my PCP's office. I had been doing some research on line (I love me some Wikipedia) based on the information my PCP had given me on possibilities. I had read about Hodgkin's and at this point, compared to what I could have, I was all but wishing it was Merrill "Hodge". Based on the CT Scan, he said that it was highly likely that it was Hodgkin's and that they would need to do a biopsy. This was scheduled within days and was a CT guided needle biopsy. This caused me slight discomfort for about 24 hours after the procedure and yielded inconclusive results (pain for no gain....rrrrrr).

An oncologist was contacted and they referred me to a thoracic surgeon (Dr. M.D. Stam in Winchester) for a better biopsy. The mass was in an area of my body known as the mediastinum. This is roughly the space in and around your lungs or the thoracic cavity. A biopsy of this area is known as a mediastinoscopy. Instead of a needle being guided through my chest wall, an incision was made giving doctors a good view of the area. Immediately after the surgery, an Oncologist from Shenandoah Oncology came by and told me they were 99% sure that this was Hodgkin's and that they would await the pathology to confirm and also get a second path done in UVA to be 100% sure that it was Hodgkin's and what type it was. I was diagnosed with Classic Hodgkin's Lymphoma, nodular sclerosing. This is the most common form. A PET scan would later narrow it down as Stage II-A. This means that the Hodge is in more then one node, but in a general area of my chest and the A refers to me being non-symptomatic.

What doctors focus on as symptoms of CHL are night sweats and weight loss. I have also heard people lump excessive break outs or skin irritations as well. I had none of these and it was found proactively. My current Oncologist, Dr. William Houck in Winchester, said that NOT being symptomatic is important. He has had/seen Stage IV-A patients react better to treatment and have less reoccurrences then those with any stage but symptomatic (lncluding Stage I-B). I was given a treatment plan of a chemotherapy called ABVD for six rounds consisting of two courses. This means 12 treatments total, every other week. My wife and I called around to other oncologists and confirmed that they would prescribed the same treatment. We also called around and were given glowing reviews of the doctors in the Shenandoah Oncology group. We have since settled on Dr. Houck as our main man and started treatment.

This blog has been long and will no doubt be it's own section, but since I need to backfill the story, it was needed. Now on to the first treatment.

Cancer McGillicutty...

Alrighty, where do I start. First things first, my wife is an accomplished blogger and has a pretty sweet site. We have 5 children: A set of two year old triplet boys and a set of one year old twin girls. So she has a lot to blog about :) I am starting this blog because 1.) I searched for an individuals blog that was my age and gender dealing with the affects of ABVD treatment for 6 months (12 total treatments). I saw some that were dated, and some that were different in treatment time and included radiation, but I did not see a ton that were exactly like mine. 2.) I thought a fresh perspective from 2007 wouldn't hurt people who have been diagnosed around the same time.

I wanted the following answers or as close as possible to the following:

- Will I be able to work and watch after my children during most of the six months of treatments?

- Should I watch out for any foods in particular?

- What were other's experience with weight loss or gain, energy highs and lows during the 6 month period?

I was really worried about work and children because I need to make arraingements as best as I can for the next six months. I have recently come to pay more attention to foods and which ones can be easier on nausea and mouth sores. The energy highs (or normals) and lows will be tracked via a bi-weekly graph.

Anyways, hopefully I can provide some info for others. Feel free to request any type of update or information I am not providing.