Middle Appt Update

Well,

Although my WBC was an all-time high, I was pretty fatigued all of this weekend. Could have been the holidays, could have been the eternal cold I have. I wake up EVERY morning and spend the better part of 2 hours clearing my nose. This is after getting up every two hours in the evening to figure out how to sleep in order to continue to breathe. Yesterday marked the "as long as there are no surprizes, I only have 3 weeks until my last treatment". I have #11 next Thursday and then #12 two weeks after that. Then I would presume (I will find out next Thursday for sure), that I would get another PET scan. Should that be good, we would then schedule the surgery to have my port removed. I wonder if they will let me keep it :)

I hope everyone is having a great Holiday.

Normal wear and tear after treatment #10

Well, #10 is all done and there are just 2 more to go. We'll have a PET scan after the last one and then schedule my port to be removed should everything continue to look clean. Apparently I would need to come in every month or so for a flush of it until it did get removed, and I don't want to see that infusion treatment room ever again.

Jan 17 would be my last treatment now unless something pushes it back.

I am feeling ok. Took some Ibuprofen (headache), Docusate Calcium (to stay ahead of the constipation) and a Kytril to chill my belly. Trying to load up on fluids and get through the weekend so I am in good shape for x-mas.

Merry Christmas everyone.

I am calling shenanigans on the deal...

Well, I am getting treatment today (YAAAA!). However, my white blood count was 6.7 (6700 per mm3). That is well within normal range. So that's good. However prior to even getting chemo for the first time back in August, my WBC was 4.7. So some how in 1 week I went from 1.7 to an all time record for me of 6.7. I wonder about those results. Either way, I am getting treatment, so that's good news.

I would like to use this time to send some shout outs to people:
- Jamie at More Adventures (link over on the right). He's at the start of his deal but is a 1A, so he has that going for him. Long road ahead, but it goes quick.
- Sandy at the Lymphorama (link =>) is going through radiation and having some effects from it. I wish she didn't have to go through that during the Holidays. We are thinking about you girl.

Jinx, kibosh, whammmmmy..

I should have expected this. My last post stated "1 month to go", three total treatments. Then on Monday evening I contracted a terrible stomach bug which put me down for 24 hours. At that point I knew there was a pretty decent chance my #'s would look like junk come today, but I thought I would give it a try. Sure enough, I was 1700 on my WBC's and 350 on my ANC (absolute neutrophil count). The first number isn't great, but the last number is definitely trash. Here is a good link explaining what low counts mean and what is good/bad.

Regardless, I have been pushed back a week. I am not upset about it, like I said, I expected it a little and I have been extremely fortunate to not run into (knock on all things wooden) any major illness setbacks during this. Especially in light of the fact that I am not taking Neulasta or Neupogen.

We'll see what next week looks like.

On a good news front, Georgia M. from Pennsylvania, is a reader whose husband Ray was diagnosed a few months ago. They got results back from a recent scan showing no activity and significant shrinking of nodes. Stuff like that cheers me up and I know it will help him push through the rest of treatment. We are thinking about you Ray.

Countdown is on...

Jan 10th, as of now, would be my last treatment of the newly "AVD". 32 days from tomorrow. I have three treatments left with my next coming this Thursday the 13th. I have been doing well with my side effects lately. The fatigue and nausea haven't been real bad, I have noticed some hair growth in areas where it was gone and I haven't experienced any of the belly issues or hot-wing mouth like I had in the past. Some of these are because of what I do to prevent them after treatment, some are just occurring on their own. Either way, the last 5 months have gone by quickly and the treatments get here sooner and sooner it seems. With Christmas and New Years right around the corner, there will be even more distractions to make the time fly. Here's to one more month left.

White Blood Count

I had a snazzy little chart showing my White Blood Counts from treatment to treatment. Let's just go on record as saying, that since early October, it has always been around the 2100 mark. The only difference was when I took an extra couple days off to take Jess to Boston for the parade, then it was 2400. So just assume, going forward that it is 2100. The nurses, my doctor and everyone else get a real kick out of the fact that it hasn't changed the least bit.

No live blogging today

Well, in a perfect world, I would have had a nice recliner, a chair for my babers and systematic (if not quick) flow through treatment today. However:

- as a result of the PFT (which shows some slight diffusion issues, but nothing terrible), they had me get a Chest X-ray today which came back negative (delayed meeting the doc).

- They have disco'd the Bleo for the rest of my treatments (3 left). Took a long time to talk with the doc.

- Once I was out on the infusion floor, there were no recliners and no rooms, so I started my treatment in a normal waiting room chair.

All of this took about 6 hours and 30mins and I was not in a blogging mood. I couldn't nap either.

Regardless, it is over and I got a nap this afternoon. I also was able to watch all of the "No country for old men" movie I had recently procured as well as half of "Super Bad". It made the time go faster.

Nine down, three to go.

Turkey Town

Happy Thanksgiving to all out there. I had another decent time after treatment #8. Normal fatigue and tiredness, but no hot mouth and other stuff. Also, I felt great in time for Thanksgiving. We had my parents (who now no longer live with us) here as well as my in-laws and younger brother Ben. Food was great and we really had a good time. The kids were good for the most part and enjoyed seeing all the people in the house and all the attention they got.

Treatment #9 (start of cycle #5) is this upcoming Thursday. I haven't gotten the results of my PFT yet. This was done as a precaution to see if the Bleomycin is affecting my lungs. Either way I am no longer getting it.

Here is to everyone having a great holiday season.

Treatment #8 getting started

Alrighty,

Met with the doctor. He is going to check in on a slight cough I have with a Lung Function test and is keeping me off of the Bleomycin in the meantime. I'll get posting today as I can.

Updated:

Well I slept a lot. But the important piece of our visit was talking with my Dr. He believes that within the next 5 years or so, a negative Pet Scan around the 6th treatment mark or earlier would lead Dr's to stop after treatment #8. When he heard I had a little bit of a persistent cough, he decided to discontinue the Bleo as part of the regimen. So I am now down to AVD. Truth be told, it's the D that kicks my but, but he's staying.

If after treatment #10 I start experiencing any symptoms that would worry him, he mentioned the possibility of stopping after that. YEAH. Now I need to do some research on recurrence and if shorting the treatment increases the odds.

Feelling pretty good

So for whatever reason, I recovered much better after treatment #7. My thoughts on it:

- I felt slightly less tired (maybe the extra couple days between treatments?)
- No major mouth issues outside of taste differences since I drink only sweet tea, crystal light or Gatorade at room temp.
- Nausea under control during entire treatments (just get a little queezy anticipating treatment day).
- Bowels are good to go since I followed MJ's protocol {daily docusate calcium (kaopectate) forget docusate sodium (Colace}.
- MJ also mentioned that they are up'ing her doses because she, like all of us, are gaining weight due to the roids (decadron). They haven't done that for me, but i wonder if my weight gain isn't helping me take the treatments

Needless to say...

I drifted off and got my sleep on again. It actually makes the time go faster so I don't mind at all. There was a lot of chatty people getting juiced up in there tho, so it wasn't as easy to stay asleep. My dad took me to my treatment, he had never been before. He has had a lot of people in his family die from various cancers, mostly smoking related ones, but he is the 13th of 16 kids, so he has seen his share. I am sure he has seen a infusion treatment center before, but it still is depressing. I try to tell him that Hodgkin's isn't believed to genetic, due to it's world wide indiscriminate diagnosis, but I still think that he believes his genetics has something to do with it. I'll keep trying to convince him otherwise.

Alrighty, 7 down 5 to go.

Treatment #7 live blogging

8:25am ET: Ok, so I will attempt to blog live again, even though I usually get tired and nap about 2 hours into it :)

Today's treatment was pushed back due to a quick little trip I had up to Boston with the wife. We'll see if I can do the rest without any delays. They are about to get my #'s on my blood at this time and we'll see where we are. With an extra two days in hand, I would assume that they are better then normal.

9:00am ET: As expected my WBC's are around 2700. About 600 higher then normal, but I had an extra 2 days, so... They are giving me the meds now prior to the good stuff (bad stuff).

10amET The red stuff is dripping and i don't like looking at it anymore. RRRRRR

11am ET Nappy time :)

No treatment today due to Boston trip

Alrighty,

Being the good husband I am, I deferred treatment until Friday in order to take my wife to Boston for the Red Sox Parade. Fun was had by all, even though I am an Orioles fan :) As long as the Yankees didn't win, that's all that counts.

Update after #6

I pretty much have had cold symptoms for the past 3-4 weeks. No fever (should i get a fever over 101.5, the docs would like me to go to the emergency room, since my white blood cell count is so low), but just runny nose, light chest congestion and light sore throat. I can't seem to kick it, and I'll just assume it's because of my compromised immune system, but it's becoming a drag.

I just got over the sore mouth for this past treatment. I had been super tired also, but I expect that to be over soon too.

Live blogging from treatment #6 (halfway point)

With all the good news from last week's PET Scan, I have renewed energy. So here's to not passing out during the final hours of today's push.

10:00am et: Aloxi is getting his drip on and I am getting my surf on. This should be quick.
10:25am et: Ativan and Decadron are in, just flushing it through currently.

10:55am et: Thought I would keep a running tally of my White Blood Counts. I am getting not getting an WBC booster unless I get sick. And to date I have been fine. I'll try to keep this updated.
11:05am et: Adriamycin is through and the same with the Vinblastine. Loading yo Bleomycin at this tine.
11:15am et: Bleo is done and now we are waiting on the big boy. DTIC. This is where I start to feel it.
11:40am et: Hitting the wall....rolling over for a quick nappy.

7:46pm et: Needless to say I hit the wall, woke up and got the fudge out of there. After the last med I am racing to get out. We left around 12:30pm, so not to bad. I am not feeling terrible at this moment but I did nap today real good. 6 down, 6 more to go.

Just in time for Halloween

Get your own Jonny Red skeleton. Here is my x-ray. Check out my port on the left (my right). You can see the catheter from it and everything. I think it runs through to the heart. I can jump rope with that damn thing. (Note to self: Ask for it back once it is removed). I also have a boat load of dental work too....brush those teeth kids.

How I am feeling post-pet scan and pre treatment #6

Obviously the #'s for this week are a little skewed due to the good Scan results. I am implementing a new therapy for my "innards" care of MJ over at My Life With Hodge. I am also going to work on my "keep my mouth from getting nuts" routine, by implementing some advice from Kelly at Chemopalooza. I'll let you know if there is any change. If those chill out, I will be 9.5's across the board BABY! For those who want to keep score from home, I am also going to post a graph of my White Blood Count from treatment one on out. TMI, I know.

Pet pics

Okey dokey. So I have the CD with the Scan results and the radiologist's notes. Here is what he wrote in short:

He summarized my July 13th Scan and then stated: None of that abnormal activity is apparent on today's examination. The CT portion shows some bulky nodes still, but these are now metabolically inactive (not cancerous).

He then went on to mention some weird anatomical stuff he found (anomalous vein descending the aorta) before mentioning that there was a spot just to the right of my belly button that lit up. It had no correlating enlarged node or organ with it on the CT Scan and it is not consistent with the regression of Hodgkin's. They (the radiologist and my oncologist) had no explanation, but would like to see what it looks like on the post-treatment scan in Feb. I am cool with that. I highlighted it in the pic.

Blue skies. So the news from Dr. Houck on the PET Scan was great. There is no "light up" in the chest any longer. A CT Scan done at the same time does show two nodes still enlarged. Dr. Houck expects this to continue to shrink down in time as it heals. There may also be scar tissue that will show up on all CT Scans for me from here on out. We will know that it is scar tissue and not tumor because it will not be cancerous, growing or metastasizing (future pet and ct scans).

I will try to get some pics up of the scan when I get the CD. There was a small light up on the pelvis, not around any known anatomical tissue. They believe this is an anomaly and will just look at the post-treatment scan to confirm this. It is not in a place that Hodgkin's would metastasize to and wasn't on the initial scan, but thought I would note it for everyone.

More info to come...

What's in the scan Stan?

PET

Got my Pet Scan today. Obviously, we won't get the results for a couple of days, I will post them and hopefully get a copy of the deal by the end of the week. Fingers crossed that things look good. For whatever reason, the nausea for the last few treatments has been getting worse. I have not actually thrown up yet, but it sure does feel like I will. I am just in a general malaise of nausea, hot mouth and tiredness. I am trying to mix up what I am doing, eating, drinking, etc. In the meantime, I feel like a log who doesn't want to do much. Not a good place to be in when you've got some kids to tend to. Jess and the rest of the family are doing a great job, I just feel crummy and useless at times.

Alright, update to come upon results.

Peace.

If you're nice, I may let you pet my port.....

Live blogging for treatment #5. Today was a Dr's visit prior to treatment, so we are starting later. I haven't done the PET scan yet, so no results to chat with him about.

10:39am ET: Giving me the Aloxi for nausea with a Decadron kicker on the back side. The Dec is fattening me up. I was 221 when I checked in 2 months ago, and now I am a svelte 234. If we were on Sesame Street I would be brought to you by the letter O. No roid rage tho, so I guess I have that going for me.


19:34pm ET: UPDATED Well so much for live blogging. Schlabers ended up picking up one of the kids from preschool and while she was gone I slept. Despite the meeting with the Dr today, the whole deal went pretty fast, which is mad appreciated.

Sorry for the lame no-posts. They are trying to get the PET scan scheduled ASAP, so the results of that should be next.

Going into Treatment #5 and the Pet Scan

Treatment #5 is tomorrow and I did not get my PET scan done before it. No biggie, I was on vacation and it didn't work for my schedule, but I will plan to do it sometime after #5. I have updated the "how I feel" chart. Steady at an 8. Again, it's taking me about 5-7 days to shake all the ill effects of the treatment, but they aren't that bad. Fire mouth and stomach issues could be much worse.

The hair caper

So the iggy on my hair is that I have none on my upper lip or below my lower lip. I used to be able to grow a nice beard and goat-tee, not unlike Mr. It above. Not so much now. I also estimate that I have lost about 20-30% of the hair up on my dome. It was sorta thinning before, but now that it is shaved, when it grows back, i can see some major spots and thinning. Same with the rest of my beard. Also, I am not growing those onesy twosey Andy Rooney's along the eye brows. My slight uni-brow too, has ceased and desisted, so it's not all sour grapes. Any other part of my body where clothing rubs up against it (outer leg, upper quad, etc) is also bald or uber-thin.

I am fine with this, but I definitely feel bad for the ladies out there that have to go through this. I could understand how tough this would be for them.

The hair deal is obviously always there (along with the intestinal issues). From here on out, just assume that I am having issues with both (the milk of mag is the bomb, but a little caustic :)

Keep in mind, the blog is for friends and family, but it's main intent is still to document "all the little things" that I am going through so that others can gauge what they can expect and when. Atleast what degree a 31 year old dude, went through.

In the outer banks of North Carolina

Last Friday, the wife and I hit the road with the 5 kids and the au pair to head on down to Corrola, NC. For those that do not know, this is one of the northern beach towns in the Outer Banks. Weather so far has been beautiful, the kids have been sleeping great and I was able to get out on a friends boat yesterday and had fun. The hot wing mouth is over for this past treatment and I am feeling much better. I was not able to schedule the follow up PET scan prior to leaving, so this means it will be sometime the week of my treatment #5, then before it.

I plan to post again before we leave. Have fun working everyone, because I am not :)

My first pet scan from back in July

Here are two views of tissue in my body. The brain, heart, bladder and kidneys will or are supposed to light up. But the extra portion above my heart is not. The diagnosis from these results by the radiologist has it as (with my vernacular in parenthesis):

"Multiple foci of hypermetabolic (increased abnormal) activity within the anterior (front of my body), superior (above or higher position) mediastinum (area between the upper portions of the lungs) and left supraclavicular region (lower neck) corresponding to adenopathy (node enlargement) seen on CT scan. No abnormal uptake anywhere else."

On the next Pet Scan, we would expect the bad area to shrink or be completely gone. This will confirm that the chemo is working. Should it not be shrinking, they will alter course.

Update: By the way, the mediastinum is not to be confused with Gloria Steinem, the unltra-feminist. Although my mediastinum is pro women's and human rights, it stops well short of condoning the entire feminist doctrine. With that said, my Cerebral Cortex is a totally different monster. He will say and do just about anything to get into a girls pants. On dates he has sung the praises of neo-conservatism to young MBA coeds, only to flip it around 24 hours later in a dialogue with a women's studies major on the subtilties of Camille Paglia's work. A true "wolf in sheep's clothing", he is never to be trusted :)

What's the most conservative part of my body? Without a doubt, the VERY utilitarian "greater arse" area. Functionality over style.

Live blogging from Treatment #4

Yo yo yo everyone. This starts the live blog from #4.

09:40am Jonny McRed has his port tapped (feeling like a keg) and they are bringing back my blood results. Waiting for the #'s on the whitey's at this time.

09:50 Senor White Blood Cell is doing fine. Still low in comparison to normal peeps and low for most chemo patients, but fine for a hodge patient who isn't getting Neupagen or Neulasta. Sitting here with my Babers Mcschlabe. Say hi babers: Hi. Getting some Aloxi and prep drugs at this time. Say hi Senor Whitey: Hola.
10:45am The cool-aid has been dripped (Adriamycin), and Vincent too (Vinblastine). Mr Bleo Dicaprio is headed down the pipe now. Holla.

11:06am We are setting a time record here. The Bleo is done and now it's time for the Billy Bad Arse. Dacarbizine. Starting to feel icky just thinking of him. RRRRRR.

11:17am Sending a shout out to Kelly and Matt in Boston. They are up in Mass, checking out the live blog. Maybe you two should get together ;)

11:42am The Dac is still flowing and i am getting a bit queezy (yuk). About a quarter way through it. RRRRRR.
12:30pm All done. Feeling a little yucky but heading to Chick-Fil-a nonetheless.

1:53pm At home, chilling. Going to post my First Pet Scan from back in July shortly. Will set up the next one sometime tomorrow.

The arse dragging has subsided

I have been feeling better since Monday evening. I pounded warm gatorade for 72+ hours and took meds prophylactically just to be ahead of the normal wear and tear. Didn't sleep alot, but didn't try another Ativan to help out either so, it's my fault :)

Next weds is my 4th treatment (a third of the way there) and then I can get a PET scan done to identify if the mass has shrunk. We believe it has, since I can no longer palpate the top of the deal just above my left clavicle. It's always good to see it on a PET scan tho. I will post that as a pic along with my ORIGINAL one that I am picking up from Winchester Medical Center.

Here is an EXAMPLE (NOT MINE) of a PET Scan. I will post this as soon as I get it.

As goes Jonny McRed's toungue....

....goes the rest of my body. Like clockwork, when I could no longer taste anything other then intense heat, the rest of me starting dragging. Around mid-day Friday, my mouth started to incinerate and I started dragging arse. I have taken more Kytril for nausea, Milk of Mag for my stomach and napped a lot more this weekend then the last time. I am trying to keep up with liquids, but I seem only to be able to tolerate smooth room temperature fluids like sweet tea or milk as opposed to sodas, juices or water. Trying some luke-warm Gatorade now. I also know 100% what people mean by using Ativan for sleeping. I was having a hard time sleeping, so I took one. Man does it do the job, I was dead to the world. I'll save those for special occasions.

On a good note, football is in bloom today. Looking forward to my fantasy team and hoping the skins don't suck eggs this year. My official count down is on for treatment #4, subsequent Pet Scan #2 and our vacation to the outer banks of NC.

Live in treatment #3

I am here getting my push/drips. Going a little slow, but it's going. White Blood Cells are at 1500, but we are moving onward. ESPN is playing in the back ground, so i am fine :)

I'll keep pushing updates.

1:20pm ET: So far so good. Got a couple of small naps and haven't been chatting with everyone. I will be back online at home after some grub and a nap. Shout out to MelisB for swinging by the home to say hi yesterday. I was late getting home or I would have let her rub my dome for good luck. Her old man is clean shaven, so she would be used to it.

4pm Long day. Treatment #3 is over and I have some more info. We will push on regardless of WBC and only use neupogen if I get sick. Also, we will do a PET scan after the NEXT treatment (treatment #4, cycle #2), instead of the halfway mark. So I should know much sooner if things are working.

Feeling ok so far and had a late lunch. Going to catch up on some work and then take a nap.

Peace!

Labor day weekend

It didn't start out well, but it's getting better. Friday night I was on a conference call for an outage at work that involved 5+ members of our team. No fun. Didn't get to bed till late and it preoccupied my mind throughout the night, so I didn't sleep well. On Saturday, I got up with the kids and all was good. Kids were fun and Pops and I were able to let Jess and my Mom hit the stores. I know they appreciate that. Later that night they, in turn, allowed Pops and I to check out the local dirt track speedway here in Winchester for the first time. It was fun. I was disappointed at the "no alcohol" policy :) , but we had a good time. I have never been to a dirt or paved track that DIDN'T allow you to BYOB as long as it was in cans. Curveball. Anywards, it was fun. My older brother, Adam, came. The three of us had a blast. I will post a pic of him, when I get one. He too is bald, but is used to it. He has shaved it off from time to time due to some male pattern issues :) I ain't far behind by no means, but he is definitely leading the way. Anyways, we are both bald and my old man has his closely cut, so we looked like white supremacists. Not exactly what we are going for, but it goes unnoticed out here in the valley :)

Today we went to a huge outdoor flea market that we frequent enough to know most of the vendors. Outside of my youngest boy Jack going ape (see caption), all was well and the weather couldn't be nicer. So we shall chill the rest of the weekend. We plan on heading down to my in-laws' pool and relaxing a bit tomorrow (albeit with 5 kids). Thanks for all who comment on the blog. I love reading them and it lets me know that people are reading the posts. However crazy they be :)

I am still feeling good and got my fingers crossed for treatment #3 on Weds. I am thinking good thoughts on whiteblood cells. My friends Shane and Atika are being induced at this time, so I am waiting by the phone for the news. We are thinking about you guys. Hope everyone is having a great weekend.

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.