Homer no function beer well without. - Homer J. Simpson


 Hodgkins:

March 20, 2007 - Keeping in touch / Another fundraiser!

Now that I'm into my second year of remission, woo hoo!, my updates have certainly gotten less frequent. Last month I had checkups with both Dr. Mendez and Dr. Calkins and everything continues to be fine. I've mostly gotten my energy back and there is no sign of the cancer returning. Both doctors chastised me for not having lost the weight that I put on through chemo, but other than that, everything is great.

About a month ago, the Leukemia and Lymphoma Society contacted me about getting involved in a fundraiser called "Man and Woman of the Year". It's a 10 week long event in which several candidates compete to see who can raise the most money for the society. We compete in honor of a girl or boy that has a blood cancer. Jen and I discussed it and felt that this was an important cause and that we wanted to be a part of it. I am competing in honor of Carlee, a little girl who was diagnosed with leukemia last year. She's currently doing well but has another 2 years of treatment ahead of her. I can certainly sympathize, my 6 months of chemo sounds like a walk in the park compared to the 30 months that she will be going through!

Over the next few weeks, we will be hosting several fundraisers to help raise money for this event. Please check back to see what we have going on! If you'd like to make a donation, you can do so on our campaign website. Thanks for your support!

October 31, 2006 - Overdue update!

Well I'm quite overdue for an update! I had a PET/CT scan in september and everything was fine. I've got a checkup with Dr. Mendez this coming monday. Good news is that I had my port taken out a week ago! All right!

The Light the Night even was a great success. I raised $4,500 ($5,000 total for my team) and Jen's school raised another $2,900! Thank you everyone who helped make it so successfull for us! Some pictures of the walk can be seen here.

August 29, 2006 - Light the Night Fundraiser

Every year, the Leukemia & Lymphoma Soceity holds a fundraiser called Light the Night to help raise money to fund blood cancer research, education and patient services. It's a leisurly 2 to 3 mile walk at night with each participant carrying a lighted balloon (red for support, white for survivor). Jen and I have decided to take part in this event both to celebrate my success with therapy and to support those who have not been quite as fortunate. The Tampa walk will take place on October 7 at Curtis Hixon Park.

If you are interested in helping support this cause, please consider sponsering us. Donations can be made online through our Light the Night website. Thanks for your support!

April 25, 2006 - 3 Month checkup

Yesterday was my three month checkup since finishing chemo and happily everything is still good. I had my PET/CT two weeks ago and the results from it are still clean. No change from my last clean scan in October.

Now I pretty much just go on a checkup routine. Assuming everything stays good, Dr. Mendez will see me every three months for the next year, then every four months for a year and then every 6 months for a year. He doesn't feel it necessary to do the scans as frequent so my next scan will be in six months.

August 21, 2006 - Belated 6 month checkup

So I've been pretty remiss in getting up my 6 month update. In July I met with both Dr. Mendez and Dr. Caulkin for my 6 month post chemo and 3 month post radiation checkups. Both went very well. Both appointments were just checking in and talking with the doctors. My next PET/CT scan is September 8th. Those are the checkups that really matter!

The other news from July is that I did my first follow up pulmonary function test. As you might remember if you've been following from the beginning, the affect of chemo (and then radiation) on my lungs was very concerning. As an avid SCUBA diver, any degraded lung function would pretty much keep me from ever diving again. Happily, my PFT showed no significant degradation from my pre-chemo tests. In fact, all of my test results were at or above the normal expected values! Woo Hoo! As soon as I get this damn port out (probably sometime in October), I'm going diving!

April 25, 2006 - 3 Month checkup

Yesterday was my three month checkup since finishing chemo and happily everything is still good. I had my PET/CT two weeks ago and the results from it are still clean. No change from my last clean scan in October.

Now I pretty much just go on a checkup routine. Assuming everything stays good, Dr. Mendez will see me every three months for the next year, then every four months for a year and then every 6 months for a year. He doesn't feel it necessary to do the scans as frequent so my next scan will be in six months.

April 13, 2006 - Rads are all done

Well, treatment is all done and the side affects have pretty much all gone away. March 31st was my last treatment. My throat had already started improving and by last week it was just about back to normal. I've got an occasional cough that's still lingering but that's getting better too. My skin is very dry and peeling a little bit in some places. All in all though, radiation wasn't too bad.

This past tuesday I went in for my 3 month PET/CT scan. Can't believe I've been done with chemo for 3 months already! Hopefully I'll never have to deal with that crap again. My next checkup with Dr. Mendez is April 24th and I'll get my scan results then (if I don't get anxious and call for them sooner).

Now that treatment is all wrapped up, I got caught up on my insurance paperwork. I keep a running file of all of my Explaination of Benefits forms and reconcile them with my doctors bills. All of my radiation treatment EOBs were available so I'm all caught up (well, with reconciling them...payment is another story as I've still got about $3,800 in outstanding bills! Donations gladly accepted!). So who wants to guess what an average Hodgkins treatment costs? My running total to date...$56,787.70. Out of pocket (after insurance paid it's part and negotiates down the prices) is at $6,965.49. I gotta say, I can think of about a million better ways to spend seven grand than going through cancer treatment!

What's really sad is even with all the expenses we had last year, between Alex being born and my medical bills, we still don't qualify for the medical deduction on our taxes. How farked up is that?!?

March 26, 2006 - The wonderful world of radiation esophagitis

Friday marked the end of the second week of my radiation therapy. I've completed 9 treatments and have 5 more to go. On tuesday, I started getting a little bit of irritation in my throat and by thursday it had developed into full blown pain. This is an affect called radiation esophagitis. Basically, every time I swallow it feels like there's a lump of sharp glass in my throat. Not pleasant at all. In fact, I can only eat for short periods of time before the pain becomes too unbearable. Ann Marie, the nurse practitioner at Dr. Caulkins' office, prescribed xylocaine to numb my throat before eating. Let's just say that the mouthwash I took for the thrush was like sweet chocolate cake by comparison. It is so bad, I can't really use it. Last night I almost threw up just from the taste. Today I spoke with the pharmacist and she recommended mixing it with some Mylanta to help. I gave it a try and at least I'm able to swallow it without gagging. If the pain gets much worse, I may start sharing baby food with Alex.

The irritation will probably last for another few weeks. From what I have found out, it usually goes away anywhere from 1 week to 1 month after finishing therapy.

Based on some of the information I've read, I believe I also have mucositis. My mouth has been very dry and I've felt dehydrated. Drinking a lot of water has been difficult because of the esophagitis but I'm doing my best. On monday I see Ann Marie again so I'll mention it to her.

Still, this treatment has really been a breeze. I'll take 3 weeks of radiation theraphy over 6 months of chemotherapy hands down.

March 14, 2006 - One down, thirteen to go

Today I got started on the radiation therapy plan that Dr. Calkins laid out for me. Last wednesday I went in to have CT scans done so that the plan could be created. Basically, I had to lay on the CT machine for about an hour being perfectly positioned by the nurses. Using the CT scans allows them to perfectly line up my body and allow for an accurate mapping of the radiation field. The process wasn't too bad except after laying on that uncomfortable board for so long and not being able to move, your body gets sore. I left last wednesday with a bunch of marks on my body for the alignment lines.

Yesterday, I went back for basically a "dry run". I was put on the x-ray machine and a bunch of films were taken to see exactly where the radiation would go. My plan calls for radiation to the mantle field, which is the upper torso. However, we only want to radiate the areas where the lymphoma was present. Essentially, it's under my arms, along my trachea and in my neck. A plate was created that contains metal (lead?) blocks shaped to keep certain areas of my body from getting the radiation. Essentially, they cover my lungs. During that process, I got even more lines drawn on me that outline the blocks, and also got a small tatoo dot on my chest that is the center of the radiation field. Dr. Calkins reviewed the films and gave the ok to proceed with the treatment.

So today I went in and had my first treatment. The plan calls for 25.2 grays (Gy...a gray measures the amount of radiation absorbed by the tissue and is equivalent to 1/100th of a roentgen or rad) administered over a period of 14 days. My last treatment should be March 31st.

For those that are interested, this is what the markings look like. You can roughly see the outline of the blocks. Just ignore the rolls, 6 months of steroid use packed on some pounds!



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There are a couple of side affects that I will almost certainly have. First, the irradiated skin will probably burn and peel. It will look and feel like sunburn. To help minimize this, I'm not allowed to wash the areas being treated. They can get wet (so I can still take a shower), but I can't rub them. I have a special cleanser to use under my arms because some deoderants have chemicals that can actually increase the strength of the radiation, so no deoderant. I also can't shave anywhere that the radiation hit (so my entire neck). I will also probably get a sore throat since my neck is being treated. I have a restricted diet to help keep from irritating my throat (for example, no acidic or basic liquids, no rough food like peanuts, no very hot or cold foods).

In addition to the "minor" affects, there are a couple of major ones that are possible. The most likely (almost definite) is a slight impact on my lungs. Most of my lungs are being shielded, but the very edges are going to be affected. This will cause some fibrosis in the exposed areas. If you remember, fibrosis was exactly what I was worried about the Bleomycin causing. It's not really possible to determine the extent of the damage until afterwards. So my pulmonary function test has been rescheduled until after the radiation therapy.

The other major side affect is an extremely rare one. It's called radiation pneumonitis. Basically, it's an inflammation in the lungs caused by the immune system attacking the irradiated lung cells. It's usually treated with steroids but in very rare cases may require chemotherapy to combat. I don't know the exact statistics with it, just that it's very rare. Dr. Calkins said she has only seen 4 cases in over 20 years of working as a radiation oncologist. That coupled with the low dosage of radiation that I'm receiving makes it extremely unlikely that I have to worry about it.

For more information on treating lymphoma with radiation therapy, click here.

March 7th, 2006 - Not quite done

I had my 6 week checkup last week and everything went well. No new lumps, blood work looked good, Dr. Mendez was pretty happy. We scheduled my next PET/CT for April 11th. He also referred me to a radiotion oncologist to review my case.

So yesterday, I met with Dr. Calkins, a radiation oncologist with St. Josephs Cancer Institue. Everything I had read made me think that this was just going to be a formality. Well, Dr. Calkins didn't feel that way and wants me to do some follow up radiation therapy. Based on her experience, she feels it's necessary to lower the chances of a relapse. I've trusted my doctors so far and they've done a good job, so now's not the time to start disagreeing with them. Tomorrow I go in for what's called a simulation. Basically they take precise measurements as to where the radiation will be given. Then on friday or monday I'll go in for my first treatment. I'll have to go every day for 2-3 weeks. I'm not exactly thrilled about having to do it, but I guess that's just the way the cards fall sometimes.

February 6th, 2006 - Finished out my last cycle

Well, chemo is officially done. Last monday was the end of my final cycle! My cough finally went away over the weekend so there's nothing to worry about there (though with the temperature changes we had the past coupld of days, I've got a runny nose and sore throat again). It's a damn good feeling knowing I don't have to go in anymore. It's been great having more than just a few days where I feel good. Now it's just a matter of waiting until my next checkup.

January 16th, 2006 - Do a little dance, make a little love, get down tonight!

OK, so there's not gonna be any dancing or luvin in my near future because I still have to finish out the cycle, but treatments are done. Finished! Fini! Beendet! Acabado! Rifinito! That's right, put a fork in it cuz it's all done! Went in today for my last chemo and my WBC was over 4 (4.6 I think). We did the Anzamet again today but made sure I got the Benadryl faster so I didn't have any reaction. I've been really tired today which is a bit unusual (I'm usually not tired the day of but it's happened once or twice), but I haven't had any nausea at all. Looks like my last round might not be too difficult.

I've still been fighting a cough and have a sore throat and slightly runny noise to go along with it. I've had it for a few weeks so we need to keep an eye on it, but we're pretty sure it's just a cold/infection and nothing cancer related. Just taking a lot longer to get over it because of my suppressed immune system (the one other time I was sick through chemo it took almost a month and a half to get rid of the cough). If we don't see any improvement in a couple of weeks, we'll do a chest x-ray just to be sure.

Assuming nothing unusual comes up, my first post-treatment followup will be on February 27th.

It's really an overused cliche, but I have to say it. Getting through cancer is an amazing life changing experience. And surprisingly, for those of us that can stay optimistic throughout it, there's a really big positive side to it. It completely changes your perspective about everything. Throw in having a baby and getting married all less then a year before (I actually had cancer prior to Alex being born) and I can honestly say that I am only remotely related to the person I was a couple of years ago. I've been considering doing a more organized writing about everything I've been through so I have plenty more to say on the matter. But it really all boils down to one simple idea. All the stupid little crap that we think is important...isn't. And many of the seemingly insignificant things that we take for granted are more important than anything else in the world. When was the last time you walked outside on a pretty day, closed your eyes and just thought, "It's great to be here"? Give it an honest try. You might be surprised how good it makes you feel. Heck, do it during a thunderstorm. It really doesn't matter. The point is that you should find the joy in everything that you do.

Finally, I wanted to add a big thank you to everyone that has been involved in my treatments. When everyone thinks about what cancer patients go through, they immediately think about the doctors that have been involved and what they do. But quite honestly, at least in "routine" cases like mine, the oncologist is the least important person during the treatment regiment. I saw Dr. Mendez only a handlfull of times throughout my entire protocol and that was only when he stopped in the infusion room to say hello. On a personal level, my nurses were much more important to me. Between Terri and Monica, I couldn't have asked for a better team to be in charge of my treatment. For all the success I've had in getting through this bout with cancer, they are truelly the ones responsible. It's very difficult to explain what it means to truelly feel that someone has saved your life and I really do feel that way about Terri and Monica. Of course there are many people involved in making treatment successfull, but surviving cancer is much more than just being about killing the cancer. We, as patients, go through many hardships throughout treatment and how we get through them is largely impacted by our caregivers. Heck, just read about my allergy to PEG at the beginning of my treatment and think about how hard things would have been if that wasn't solved. So next time you're at the doctor's office, give a second thought to the rest of the staff besides just the doctor. They really do all make a difference. I hope mine understand just how important they are to me and how much I appreciate all that they've done.

January 15th, 2006 - Thought I'd be done by now

Well, I had my 11th treatment on December 29th. I'd like to say it went well...Actually it was pretty damn horrible. Getting the infusion went fine, we didn't have any problems at all. About half way home I started getting nauseous and that was all she wrote. Seven hours later I stopped throwing up. Between my marathon vomiting and having been sick all week, my throat was so raw I lost my voice for a couple of days. It really takes going through a bad one to appreciate almost being done. Surprisingly, even though it was a chemo weekend, I was able to stay up until midnight on New Year's Eve.

I went in this past Thursday (the 12th) for what would have been my last treatment. To start with, I drove myself crazy Wednesday night worrying about being sick again. Of course, I psyched myself out and actually started getting nauseous before I even had my IV put in on thursday. Terri and I decided to try switching the anti-nausea med to Anzamet instead of the Zofran, so while I was waiting for my blood counts to get run, we started the drip. Bad news, my WBC was 2.4 and my granulocytes were 34%. Both were nearly the lowest they've been and since I'm still fighting being sick we decided it best to put off chemo. But since nothing can be simple, my body decided that since I couldn't do chemo, I should have an allergic reaction. Yup, you guessed it, more itchy red hives. So I got to spend a few hours in a Benadryl stupor and felt like crap the whole day anyway. Sigh...I go back in tomorrow to try again. All I can say is I'm ready to be done. This shit is getting old.

The past month or two I've been getting some pretty severe pain in my right arm starting from the inside of my elbow all the way down to my fingers. It hurt most about 5 days after chemo. Extending my arm straight, lifting it over my head or bending my hand all made it signficantly worse. A few weeks ago the veins or tendons on the inside of my elbow got really inflamed and sensative to the touch. Terri suspected it might be neuropathy. Since we're so close to the end, she decided we'd just monitor it and only make a change if absolutely necessary. Fortunately, the inflammation has gone down and the pain during this cycle has been much less severe. With only one more treatment to go, looks like this was only temporary and is resolving itself.

And finally, to celebrate being at the end, and as a form of protest for being one of the few who didn't lose their hair during treatment, I decided to shave my head.

December 27th, 2005 - I'm really slackin' I guess, 10 down!

Sorry for the delay in getting an update online, the month just flew by. And quite honestly, since my clean scans I don't really think about it much. I go to my treatments, feel crappy for a few days, and get on with my life.

Merry Christmas, Happy Chanukah, or Happy whatever else you might have celebrated! I know we had a busy month. We did a lot of baking a few weeks ago. I brought a plate of goodies in to Terri and the gang. It was quite amusing when one of the ladies from the office came into the chemo room and asked which of the 4 women getting chemo baked the treats! Did a lot of cooking for Christmas Eve dinner. Tell the truth, I pushed it too hard and am paying the price for it. I'm tired and run down today and am fighting a cold that came on yesterday. I'm gonna be pissed if I have to put off chemo because of it.

November 27th, 2005 - Forgot my last update...

November 17th was the end of my fourth cycle (8th treatment). It went very smoothly (hence my forgetting to put an update online!). My WBC was about 3.0 which was one of the highests readings I've had on a chemo day. My "down" weekend was tiring, but not as much as the one before which was nice.

I hope everyone who celebrated it had a great Thankgiving!

November 3rd, 2005 - In the words of Dr. Venckman, "We came, we saw, we kicked it's ass!"

My October 20th treatment was the end of the 3rd cycle, which meant it was time for another scan to check our progress. Normally just a CT scan is done, but one of my preliminary CTs had a false positive, and there is a small lump on my neck that I was hoping was scar tissue (which a regular CT can't distinguish from active cancer), so I opted to do a full PET/CT. Since my insurance has been really good with my scans, we went ahead and did it. So last tuesday I got to be radioactive again. My PET/CT scans have been done by VyMed. They only do PET/CT scans there so they're pretty much experts at it. Tom, the technician who does the scans, really knows his stuff and is more than willing to explain everything in as much detail as you want. When he found out my profession, he was pretty excited to show off the computer aspects of it. We took a quick glance at my scans while I was there and they looked really good. So good that we couldn't see any areas that were still cancerous on them. Of course, neither one of us is a doctor able to fully interpret the results and I wanted the interpretation from the radiologist before sharing with everyone. I got the formal results from Terri at my chemo today:

Findings: The whole body PET-CT examination was reviewed and directly compared with the previous study dated 07-11-05.

Overall, there has been a marked interval response to therapy since 07-05-2005. The previously seen hypermetabolic lymph nodes in the right lower neck, as well as in a right medial subclavicular location, have resolved. The previously seen hypermetabolic lymph nodes in the right axilla have resolved. The previously seen hypermetabolic lymph nodes in a left subclavicular location have resolved. The previously seen hypermetabolic mediastinal lymph nodes, which were in a prevascular, right paratracheal, lateral aortic space location, have resolved. The previously seen hypermetabolic soft tissue mass, which was present in the anterior right chest wall in a right parasternal location, has resolved on the current study.

Impression:

  1. Marked interval response to therapy since the 07-11-05 study. The current study demonstrates resolution of previously seen metabolically active lymph nodes in the head, neck, and chest region, as fully described above.
  2. No metabolically active lesions in the liver or spleen.
  3. Continued interval follow-up with PET-CT is recommended to assess for continued response to therapy.



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So that's the technical analysis by Dr. Cotton, Vymed's radiologist. For those of use without a medical education, it basically means that the little bastard is completely gone! Woo Hoo! If you look at the original scans (it's easier to see the difference in the image on the right) you'll see some active areas by my shoulders, neck and chest that don't show up on these. That's the cancerous areas that are now gone. So what's next...well, I need to finish my chemo schedule, which means 3 more cycles.

Today's treatment went pretty well. My counts were pretty low. WBC was at 2.4 which was much lower than preferred for chemo (remember Dr. Mendez's normal limit is 3.0). One of the other indicators (can't remember the name) is a percentage that he prefers be at 50% for chemo. Today I was at 42% (the lowest I've been treated at was 31%, but my WBC was much higher). Terri and I talked about it and decided to go for it. I haven't had any problems related to my counts and I know the things I have to be careful about. I'll go in next week for a CBC check just to make sure I'm ok.

So I've started cycle 4. Only 2 1/2 cycles to go (5 treatments). If I'm able to stick to every other week, my last treatment will be on January 5th. Sounds like a good birthday present to me (my birthday is January 2nd)!

October 20th, 2005 - Half way home!

Well, cycle number three is done (well, the treatment at least, the cycle isn't technically over until after next week) and that's half way through a normal protocol (6 cycles). Next week I'll be going in for another PET/CT scan so we can evaluate my progress (so look for some more cool pictures).

My white counts were significantly higher today than they have been (3.4). I was a little sick at the beginning of my treatments (had a small virus / head cold) and we think maybe that was suppressing my counts more than normal. In other good news, Terri said the thrush is almost completely gone (I still can't see a difference, I think she just wanted to torture me by making me take that nasty banana mouthwash).

Post treatment is definitely getting a little more difficult. Chemo is definitely cumulative (kind of like country music, the longer you're exposed to it, the more you want to puke<grin>)! I've noticed that I've been feeling progressively worse after chemo. Today I felt a bit too off to go into the office afterwards so I worked from home for a bit and relaxed. I'm expecting saturday and sunday (days 3 and 4) to be a bit worse too so I'm going to start taking my phenegran tomorrow as a preventative. Fortunately I was able to switch back to thursday chemos so I don't have to feel bad about missing two work days.

I've been doing some research about the rash on my hand and I think it might be Neutrophilic Eccrine Hidradenitis (link1, link2, link3). Basically it's a rare rash that seems to be brought on by chemo normally given for leukemia, and more recently lymphoma. Basically there's nothing that I can do about it. It goes away on it's own.

Terri had a good laugh about it when I told her. The vast majority of the people on chemo lose their hair. Do I? Noooo, of course not. Instead I have a severe allergic reaction to polyethylene glycol on the damn IV tubing, get thrush after my first treatment and get a rash that practically no one has ever heard of. So basically, there's like one other person in the whole friggin world who have had the same combination of side affects that I have. Talk about shit luck. I'd go play the lotto but I'd probably get eaten by a rabid llama on the way. But don't get me wrong, I feel I've been very fortunate. Many people have a much more severe affects from chemotherapy than I do.

October 4th, 2005 - ...and another one bites the dust

Treatment number five is a done deal! No problems at all today, everything continued to go off without a hitch. And that's two treatments that were right on schedule at the two week mark. My counts were low again (WBC was 2.8), but Dr. Mendez said that's probably just what my cycle is and as long as we don't see any problems from it he's fine with doing chemo at those numbers. I'm switching back to thursdays for my next treatment as I want my down days to be during the weekend. After the next treatment we'll do another scan (CT or PET/CT, not sure yet) to check the progress we're making. We're all optimistic since the visible signs are all gone.

My thrush is slowly going away so that's a good thing. I don't need to take the nasty mouthwash unless it starts getting worse again. I've started getting a rash on my hands that is a little itchy in the morning, but other than that doesn't really bother me. Dr. Mendez said it's probably something to do with my sweat glands that the chemo helped bring on. He said keep it dry and if its itching use some hydrocortizone cream. All in all, there are worse side affects than this!

September 26th, 2005 - Second cycle is done!

Sorry about the delay in getting this update online. Now that things are going smoothly with my chemos, there's not a whole lot to write about. That's a good thing I suppose. Last tuesday (the 20th) was my fourth treatment. My blood counts were borderline low again and they left it up to me. As if there's a chance in hell I'm going to voluntarily delay my treatments! Everything went well, no complications. I went back on friday for a CBC just to check and my counts were doing fine. Thursday and friday were pretty rough days though. I had very little energy and by friday morning was in no condition to do anything but vegetate on the couch. Just driving to the doctors office was taxing. It was the first time that I really felt that the chemo significantly affected me. I'm hoping that it's just because I was sick (head cold) that added to it, but Terri said it was probably the chemo and will likely be the norm.

In other news, we found out that I have oral thrush. It was really just a fluke that we found out. I was at the doctor a couple weeks ago and one of the other patients was complaining about her mouth. Monica asked Terri a question about identifying thrush and Terri wanted to show her a healthy mouth so she had me stick my tongue out. I did and Terri promptly blurted out, "Well shit, you've got it too!". It hasn't bothered me at all but is taking a long time to go away. I have to take this really nasty tasting swish and swallow mouthwash. It tastes almost as good as the barium tracer I had for my CT scans. What the hell is it about bananas that make the pharmacists want to ruin the taste for them?!?

We got the results of my pulmonary function test back and everything is normal. So we have a good baseline to determine if the bleomycin causes any lung affects.

And just when you thought it was behind us...I'm still trying to get everything wrapped up with the sperm bank. As a part of the process, there was a regiment of STD tests that I needed to have done. Terri wrote me a prescription for them and I went to Qwest (a local testing facility) to have them done. For some particular reason they can't get one of the tests straight. We are on our fourth time of trying to get them to run the correct Hepatitis test for me. Hopefully they got it right this time. After all the experience I've had this summer, I don't mind getting stuck by a needle, but I do prefer it to be worthwhile!

All in all, things are going really well. Nearly all of the visible signs of the cancer are gone and other than fatigue I haven't had any bad side affects from the chemo. I even still have my friggin hair. Some days I feel so good that I get through the entire day without even thinking about all this. Yesterday I was doing some work around the house, Jen and I took Alex down to the pool, just your typical sunday afternoon. At one point I remember thinking to myself, "oh yeah, I have cancer, I'm going through chemo, shouldn't I feel worse than this?". There are certainly days where it's the only thing on my mind, but more often than not I don't even think about it. I guess that's a good thing.

September 6th, 2005 - Finally, no problems with chemo!

Wow, no update since August 21st! I guess sometimes I just need to say to hell with this cancer crap and get on with the rest of my life! Last week was a hard week, but not because of the Hodgkins per se. I had a really difficult (and long) week at work. Tuesday I worked a 21 hour shift and left work to go to my pulmonary function exam at the hospital. Fortunately the exam is just a breathing exam and doesn't involve much activity or I wouldn't have been able to do it. We don't have the results of it yet but we're not expecting any problems. The purpose was just to have a before and after picture of my lung function. We'll compare this one to another test we do at the end of treatment and it will let us know if the bleomycin has given me any adverse side affects. If there is no degradation in my lung function, I'll be safe to dive again (though I'll have to keep it to recreational limits, I won't be able to pursue any of the technical diving that I've wanted to do).

Today I had my third treatment. This is the start of the second cycle (remember one cycle is two treatments over four weeks). My counts were just a little bit low but Terri and Dr. Mendez wanted to go ahead anyway. I have to go back at the end of the week and next tuesday so that they can monitor my counts. If they go too low, I'll have to have a Neupogen shot to boost them up. We also tried the Zofran again because I was so sick after the previous chemo. I suspected that it was just the plastic tubing that I reacted to and given how sick I got I wanted to try it again. Fortunately I was right and I didn't have any reaction to it! Woo Hoo! No puking for me today! Everything with today's treatment went really well, no allergic reactions and no nausea. Hopefully this means we found the combination that works and there won't be an more problems (well, that's probably wishful thinking, chemotherapy ALWAYS has problem, but hopefully they'll be the normal ones).

After the last treatment we also did some blood work to check my liver and kidney function. We'll do this about every month or so just to make sure nothing bad is happening. Everything was fine. Just about the only bad news today is that my weight was up 16 pounds since my last visit. Terri wanted to blame it on the steroids increasing my appetite (and it has), but I'm blaming it on all of the cheesecake and cookies that my in-laws stuffed in my mouth this weekend (yes Brenda and Justin, I'm talking to you)!

August 21st, 2005 - First cycle is done!

Well good news, I was finally able to get my second chemo in, so my first cycle is finished. Friday went pretty smoothly. My blood counts were nice and high so I was in good shape to get the chemo. Terri and Monica found another plastic manufacturer that worked out perfectly. It turns out that the first set that we used had a polyethylene lining to help the plastic resist absorbing the chemicals that flow through it. Apparently that is what I was reacting to. On the new plastics I didn't have any allergic reaction at all. Just about the only downside is the phenegran that I am on for anti-nausea isn't working. I spent most of friday afternoon throwing up. Now that we know that it was the plastic I was reacting to, I'm going to ask about trying the original Zofran again. Hopefully it was just the plastic and not the medicine that I was allergic to.

August 16th, 2005 - Well yesterday really sucked

I don't even know where to start with this one (it'll be a long one). I got to Dr. Mendez's office around 8:30am yesterday (that's when they start chemos). The day started with the air conditioner in the building being down and the outside temperature was already 85. Needless to say, the office building was heating up fast. But it's Florida, and anyone who's lived here has gone through no AC days in the summer. Shit happens and if that was the worst of it I'd have been a much happier person.

Once I got back in the chemo room, the first thing Terri did was run an IV to my port and draw some blood to run the CBC test. While she was running the test, I was getting a plain saline drip through the IV (the chemo drugs get injected into the bag). While the test was running Terri was getting another person setup with their chemo so it took a little while (all during which I was getting the saline drip ($5 to the person who guesses where this is going).

A little while later, Terri came back in with the test results. No go, the white blood cell count was still too low. The WBC is measured in thousands per cubic millimeter. A normal person is anywhere from 4 to 11. My baseline test before starting chemo was at 7.4. Last thursday I was at 2.4 and yesterday I was at 2.7. There are concerned that if I dropped as significantly after this chemo as I did after the first, my count would go to near 0. That would mean I'd have to be hospitalized as I would essentially have no immune system. So we're going to try again on friday. If I'm up to 3, we'll do the chemo. Terri isn't sure if we're going to cut back on the doses. Dr. Mendez isn't happy about having to do that and wants to see where I'm at on friday before deciding. Another alternative is a booster drug like Neulasta or Neupogena. These drugs artificially boost white blood cell production and are frequently used with chemo patients. Many doctors, mine included, use them as a last resort as they prefer to get the body to produce them naturally if possible.

Ok, so no chemo. I was very disappointed to say the least but there was nothing I can do about it. Unfortunately, that ended up being the best thing about yesterday. While the test was being run and Terri and I were discussing the results, I started feeling a little hot and flushed. I figured it was just because the room was warm from the AC. As Terri was getting ready to take out the IV, I felt me arm start itching...and low and behold, I was getting some hives. We couldn't believe it. I hadn't been given any drugs to react to! Saline is completely inert and I've had it many times before. For whatever reason, this time the reaction was really bad. I'd have to say it was the worst one I've ever had. The first time was bad because I drank pure polyethylene glycol, but I eventually threw up and the reaction stopped immediately. This one lasted for several hours and was caused intravenously so throwing up wouldn't help. When all is said and done, I received 100 ml of benadryl and 3 steroid injections before we could get the reaction under control. I over heated several times and basically had to take off my shirt and have a nurse stand in front of me with a fan. I nearly blacked out twice and almost got sick once (I took an anti-nausea med and that made the sickness go away). I don't know if it was just a higher concentration of whatever caused it, or if it was because of my low blood counts or some other factor, but the reaction was much worse than it's been. It was so bad that my forearms were basically completely red and swollen. I even had a cough from it which meant it was affecting me internally as well (and that's never happened before). Fortunately my breathing wasn't restricted or I'd have had to go to the emergency room. All in all, I spent about 4 hours in the chemo room fighting the reaction.

The only possible thing it can be that caused the reaction is something in the plastics used in the IV, either the bag or the tubing. Assuming it is the polyethylene glycol that caused it, we were able to rule out the bag. Terri and Monica are following up with the tubing manufacturer to determine if it's in there. Hopefully by friday they'll have an answer and we can try a different one. Unfortunately it's going to be a bit of a trial and error. Unlike with medication, plastics manufacturers are not required to disclose a complete list of "ingredients" so it may be hard to find one that is suitable. I'm guessing I'll have at least one more reaction before we find a combination that works.

After I got home, I was very worn out. The reaction itself usually knocks me out, both physically and mentally and I usually need to rest for the remainder of the day. This time it was worse because I was on such a high dose of benadryl and steroids. If you've ever had either one of them, you might be able to imagine the result. I was very tired and sleepy from the benadryl, but wired and jittery from the steroid. Sleeping was difficult and not refreshing when it came. I think I got three hours of sleep last night. Fortunately the effects are mostly worn off. I can still feel some of the effects of the steroid, but most of them are mental. The steroid makes many people very irritable and in some cases just plain mean. I've definitely been irritable since yesterday. It's been an effort to just try and not talk to anyone. It seems like the few times I did talk to Jen last night and this morning I ended up snapping at her. We both seem to understand and just move on, but I certainly wish it didn't happen in the first place.

I have to say that this past week has been the most emotionally taxing week I've had since getting cancer. Even more so I think than when I first found out. I've tried (successfully I think) to be very positive throughout this whole experience. The prognosis is very good, I really like my doctor and nurses, and family and friends have been very supportive. I expected the chemo side affects and so far have been fortunate to not really have any. Never in a million years did I think I would have this much trouble being given the chemo. Between my WBC being so low after only the first treatment and my allergy to the plastic, this week has been very taxing. It's extremely difficult knowing that the chemo is working (my cancerous nodes have shrunk significantly) and that I can't continue with my next dose. Most cancer survivors that I've spoken to have said that the most difficult times about having cancer and getting cured are never what you expected. I'm certainly learning that. So if I'm cranky or depressed this week, now you all know why.

One last note...last thursday Terri and Monica were surprised that I hadn't lost any hair. Apparently they jinxed me because that night it started coming out. It's been slow and not really noticeable, but it's increasing. I'm guessing in a couple of weeks it'll be gone. Good riddance to bad rubbish I say :). Finally I get something good from all this (yes, I hate having hair)!

August 11th, 2005 - Chemo delay

Today I was scheduled for my second chemo treatment. Before administering chemo, the nurse will run a Complete Blood Count (CBC). If the results are too low, the chemo will not be administered. Unfortunately, mine were too low today so we couldn't do the treatment.

This is fairly common in the course of chemotherapy, but my nurse said it usually doesn't happen this early on. I'm going back on monday to do the chemo as a few days should be enough to build it back up. We're going to reduce the dosage of adriamycin a little bit as it's the drug most likely responsible for it.

On a positive note, Dr. Mendez, Terri and Monica were all very happy with the progress that I've made even after only one treatment. The swollen nodes in my chest, neck and underarm have all considerably reduced in size, which means the chemo is working. Terri was very surprised that I haven't even begun losing my hair. She was however not happy to hear that I cut the lawn yesterday. I told her I felt great after doing it and she let it drop. Hey, I'm getting tired of just sitting on my butt all day long!

While I was in there we had the misfortune of watching "Who Wants to be a Millionaire for Married Couples". One of the questions asked what the name of a chocolate and cream cake icing is called (ganache) and one of the choices was Marscapone. Terri knew it was a cheese but had never had it, so I promised her that if they got rid of the cancer I'd bring her one of the fruit tarts with Marscapone cheese on it that I make. The couple didn't know the answer and asked the audience, which amazingly did. Apparently they've started an "aol" poll as well. The aolers didn't have a clue (over 40% answered Marscapone, which prompted the discussion with Terri). She's looking forward to trying it :).

So treatment number 2 has been delayed until monday. Fingers crossed that my counts will be high enough. I was very disappointed to have to miss it today.

August 4th, 2005 - Chemo + 1 week

I thought I'd give an update on how things went after my first chemo treatment last week.

On thursday and friday I felt pretty good. The affects of the chemo hadn't really started and the steroid was still in my system. I felt just a little nauseous when the phenegran started wearing off, but taking another one made it go away (I ended up needing one thursday night and friday morning only).

Friday night Jen went out with the girls (imagine a bunch of teachers drinking and playing dice), so it was just Alex and I. Normally this is no problem. Probably not the best choice for that particular day though because he had his two month checkup that morning, which meant 4 shots. By friday night, his Tylenol and my steroid were both wearing off and we were both feeling like crap. It was a rough night! Jen was upset that she went out, but I'm glad she did...she needs to relax a bit sometimes too.

Over the weekend I was pretty much just useless couch crud. I didn't feel sick, but I was extremely tired and wanted nothing to do with food. Of course, if I actually made myself eat, I got some energy and felt better immediately. We made the mistake of trying to go to the store on saturday and after 10 minutes of walking around I was ready to pass out. For now on, weekends after chemo are boob tube days.

By monday I started feeling better and by tuesday I was pretty much back to normal. I have found that I need to sleep a lot more and that's been hard to get used to. Before all this, 6 hours or so was plenty of sleep for me. Lately I've been sleeping more like 10. I don't set an alarm in the morning to make sure I'm sleeping enough. It's nice having a job where you can just stroll in whenever you feel like it! My managers and colleagues at Go Solo have been very understanding and accommodating through all of this.

Everyone keeps asking me if I've noticed a difference. It's kind of hard to say. I still have a slight cough, but it's not as severe as it's been. And the lumps on my chest and under my arm seem to be smaller. I can't really say for sure that the chemo is doing it (only the PET can determine that), but it feels like it's working and for now that's good enough!

July 28th, 2005 - The fun has started

First thing this morning I went to my oncologist's office for my first chemo treatment. I met with Terri and Monica (Terri is the head nurse and Monica is her assistant) and they brought me back to the treatment room.

Before we started Terri was happy to tell me that the bone marrow aspiration came back negative for any sign of Hodgkins (or any other abnormality), which means I'm officially at stage IIA! They also informed me that all of the STD tests that I had to have done for the fertility clinic came back negative, but we already knew that was going to be the case.

The drugs that were planned (in order) were:

Well, that was the plan. But since it's apparently my job to force a little bit of difficulty in just about everything, my body decided to have an allergic reaction to the Zofran. It was the same as my reaction to PEG (itchy hives all over within minutes), but it doesn't contain PEG. So I've obviously got another allergy to track down. Most likely its to this entire class of anti-nausea medication (5-HT3 drugs). So instead, I have a somewhat weaker pill form of phenegran to take if I feel nauseous afterwards. It's not preferred though as it's much weaker than the 5-HT3 drugs, but there's nothing I can do about it.

Once we stopped the Zofran drip, we quickly did the benadryl and after about 45 minutes the rash was mostly cleared up. The steroid and the rest of the ABVD doses went perfectly fine, no complication at all. With everything going through the port, I didn't have any discomfort at all from the chemo.

So as of right now (about 6 hours after treatment), I'm doing pretty good. My body feels really worn out, but I always feel that way from a PEG reaction. Other than that, I feel a little off, but nothing serious at all. Maybe I'm one of the lucky ones that gets off easy (though it's way too soon to tell that)!

July 26th, 2005 - 3rd time's a charm

Jen and I decided, from the recommendation of the fertility clinic, to send another "deposit". Essentially, the more that is stored, the more likely it is to be usable if/when it's needed. So Jen and Alex had to leave the house. Again. This is the last time though since I start my chemo on Thursday.

I'm still a little sore in my lower back from the bone marrow aspiration. I mostly feel it when I'm bending at the waste. I made the mistake of walking up stairs the other day. That was not pleasant!

July 21st, 2005 - Man did that hurt

Today I was scheduled to have my bone marrow aspiration done. Basically, this is an outpatient procedure in which a bone marrow specimen and small bone chip is removed and analyzed. This will tell us if the Hodgkins has spread into my bone marrow. We're obviously hoping not because a positive test means I'm at stage IV instead of stage II. But it's unlikely as Hodgkins usually follows a standard progression.

So a little about the test...First off, hope that you never have to do it because it hurts like hell. I took some Xanax (an anti-anxiety drug) last night and this morning before the procedure. Once I got to the hospital I was given Demoral for pain (and one other drug but can't remember what it was called). I laid down flat on my stomach for the procedure. The aspiration was done about an inch to the right of my tailbone (in the hip bone). The first thing they do is numb the area with Lidocane (dentists use it, it's like Novicane). They really get it in there, basically so that there is no feeling all the way to the bone. Once that has set in, a large needle is inserted to pierce the bone. For the most part, this is uncomfortable but not too painfully. In my case, I have very hard bones (a good thing) so that had to try for awhile to anchor the needle and pierce the bone (a bad thing!). A few times they hit an area that wasn't numbed and that hurt.

Once the main needle was anchored, the real fun started. They slip a smaller needle inside to withdraw some of the fluid inside your bone. You don't feel anything until they start pulling the fluid. "Sucking" out the fluid is by far the most painful thing I have ever felt. Every single nerve from my waste down on the right side of my body screamed out. Fortunately the process only takes a couple of seconds. Unfortunately they had to do it twice because they didn't get enough fluid the first time. After pulling the fluid, a small chip of bone was also extracted. This hurt just as much as the fluid extraction and again because my bones are hard they had to try more than once.

Once it was done, I got to lay on my back with a towel under me to apply pressure to the site. There are very few risks from this procedure. The only two are infection and excessive bleeding. The pressure after the procedure is to fight the bleeding and it worked fine for me. No bleeding at all. Infection is only caused by bad procedure. It's also very unlikely as the nurses are very careful.

Recovery from the procedure is pretty easy. I went home and slept for about 8 hours. Between the drugs and the pain I was wiped out. After I woke up it didn't really hurt but was very sore. Imagine being kicked in the back by a really large person and think about how it would feel the day after. As long as I take it easy it's no problem. It hurts to bend over or twist the wrong way but that's normal. It should be gone in a day or so. I've got a small gauze pad over the site that can be removed tomorrow. That's going to be pretty painful though because there's about three feet of tape holding it in place and I'm a hairy guy! Maybe I'll pop one of my pain killers for that.

The results from the bone marrow test won't be available until next week. I'll probably just find out when I start my chemo next week

July 21st, 2005 - Damn insurance companies

This one isn't about my treatment per se, but I'm so irritated about insurance that I just had to say something. My current insurance is a PPO through Blue Cross / Blue Shield Florida. I've been with them since I started at my current job and have used them at past jobs. For the most part, I've had no trouble. Recently, BCBS, in their infinite wisdom, decided that they were going to drop all Pathologists in Hillsborough Country in order to renegotiate their contracts. Let's think about that for a minute...Any time you need diagnostic work done on basically anything except for standard blood tests, a pathologist does it. They're basically the problem solvers. Biopsies, tissue analysis, some blood tests and bone marrow analysis' are examples of what they do. They are an integral part of preventative and diagnostic medicine. Did I get across how important and involved they are in the medical field? Well BCBS doesn't cover any of their work in Hillsborough Country. I'm pissed to say the least.

I found this out when I got the bill for my biopsy analysis from the St. Joseph's Hospital pathologist and it showed no coverage from BCBS. Of course I called the insurance company to ask what was up. Turns out that there is one single pathologist in the country that they allow. But it's a small lab that can only perform a small set of tests. And oh yeah, it's against medical regulations for the area hospitals to use them. The service rep I spoke with tried to reassure me that BCBS would cover 60% with an out of network provider. Well ok, that's not great, but not too bad. But it's from the allowed amount. Excuse my language, but what a crock of bullshit. Let's look at the numbers. My biopsy bill was for $1,085. The allowed amount from BCBS? $380. 60% of that? $228. That means my medically necessary procedure is not covered by BCBS and the out of pocket I have to pay is $857. Well fine, if that's what it has to be. But are we done? Of course not. I hadn't met my deductible until this bill. So BCBS won't even cover the $228. My out of pocket? You guessed it, $1,085. And the icing on the cake is...ta da, they will only apply the allowed amount to my out of pocket costs with my insurance account.

I tried to avoid this problem with the bone marrow test today. When the procedure was scheduled, my doctors office asked about using the outside laboratory and the hospital said sure, it's not a problem. Today was a different story. Today we found out (as I was sitting in the outpatient procedure room) that they wouldn't use the outside lab and in fact were not allowed to. I was furious. The nurses all understood and did their best to accommodate me. It wasn't their fault and they understood how I felt. They eventually got one of the BCBS supervisors on the phone who recommended that we just do the procedure. When I get the bill I'm not supposed to pay it but instead call her and she'll walk me through the appeals process. Not a sure thing but she thinks we've got a good chance.

I have since decided that insurance companies are the most evil organizations on the planet. If you ever meet someone that works for BCBS Florida, do me a favor...scream at them for me. And if you're feeling really generous kick them in the knee.

July 18th, 2005 - Some good news

Today I had to go by Dr. Mendez's office to pick up a prescription for some blood work that the sperm bank needs done. Terri, the head nurse that deals with the actual chemotherapy wrote up the script for me and drew some blood for another test I needed before the bone marrow test (this coming thursday). While we were chatting I asked if the results from the PET/CT scan showed anything unexpected. Well, it turns out it did, but in a good way. The PET showed that the cancerous areas are restricted to my chest, underarm and neck. It is not on both sides of my diaphragm as the original CT scan suggested. It also confirmed that there was no abnormal activity in my liver or spleen (apparently the normal organs that Hodgkins spreads to first). Assuming the bone marrow test comes up negative, this means that I'm actually only stage II, not stage III. Always nice to move backwards on the severity scale!

July 18th, 2005 - Thanks a lot Fed Ex

Last thursday we got the package that we need to send off to the cryogenics lab for the sperm banking. Basically, they send you an empty container and some transport media. You "fill" the container, add the transport media to it, and overnight it back to the lab. First off, the whole thing is a little weird and there is nothing pleasurable about it. Second thing, there was NO WAY IN HELL that I was doing this with Jen and Alex around so they went over to my cousin Melissa's for a little bit. After a bit of, um, preparation, I got the container filled and packed up just the way the instructions said. We dropped it off to Fed Ex thursday night to be delivered to the lab by 10:30 friday morning. Other than being a little odd, it was easy enough.

Before I go on, let me explain a little about how it was shipped. Basically, it was in a Fed Ex diagnostic specimen bag. It lets them know that it's something medically sensitive. Most likely, it's shipped and stored separate from the millions of books and toasters that are being delivered by everyone else.

So friday afternoon I get a call from the cryogenics lab. They hadn't received the package and when they called Fed Ex they were told that it was never shipped because it was undeliverable and they needed me to call them and find out what happened. In the mean time, since it was the weekend, there was no way that the package could be delivered in time to be useful. The lab tech and I both decided it that we just needed to send another specimen, though I still needed to find out what happened. So tonight I get to send out another deposit. And yes, Jen and Alex will be leaving the house. Again.

So now that that was all settled I called Fed Ex and explained I had dropped off a package to be delivered overnight that was never sent out and I needed to know why. They get the tracking number and look it up and find out that it was indeed not sent. So what was the next thing they asked? You guessed it..."What was in the package you were shipping?". After a few awkward seconds I mumbled something about a package to a fertility clinic. They asked how it was packed and I told them. So they asked me again, "What was in the package?". After a few more even more awkward seconds, they prompted me with "was it a box, a bag, a plastic container?". AH!, that I could answer! Eventually they had the local Fed Ex office call me back. It turns out a package in the shipment leaked all over a bunch of other packages and they were still sorting it out and could they call me back. Uh, sure. So after about half an hour of wondering if Alex's future siblings were all over the Fed Ex shipping station, I found out that it was someone else's package that ruined mine. Because of the nature of those deliveries, any leak like that causes all the affected packages to be destroyed. They reassured me that mine was packed properly and that the next one should be fine.

July 14th, 2005 - Almost done with the preliminary stuff...

Yesterday I went in to St. Joseph's hospital for my echocardiogram (ECO). It seems like when you go through treatment for a major disease you get to see all sorts of cool diagnostic tools. And cute nurses always seem to be telling you to take off some piece of clothing (in this case, my shirt). This is basically an ultrasound of the heart. You lay on your side and they poke you in the chest with the ultrasound reader. The purpose of the test in my case is to get a baseline reading of the health of my heart. We'll do one again later on after we've started chemo to make sure that nothing is changing (one of the chemo drugs has a very slim chance of causing heart problems). As with the PET/CT scan, I really had no idea what they are looking for, but it was really cool to see my heart beating on the screen!

And on a side note, today we got the, ahem, "deposit slip", for the sperm banking so that will be out of the way too. Only thing left is the bone marrow test next week and then I can get started with the chemo.

July 11th, 2005 - Let's get radioactive!

Today I had all of my baseline PET and CT scans done. Dr. Mendez ordered a PET/CT scan, and CT scans of my neck, abdomen and pelvis. We aren't expecting anything unknown from the tests, it's really just to get a baseline before we start treatment.

I started the day by not being able to eat. That shouldn't have been a problem because my scans were supposed to be at 9:45am. Unfortunately, there was a mix up and they didn't tell me that I needed to have a prep kit. So they gave me a <sarcasm>really yummy</sarcasm> barium sulfate banana shake and told me to come back at 1pm. But I still couldn't eat. So a little after 1, I was back in the CT scan room. A really nice nurse from Jersey put me on the table and told me to take my pants down. I'm guessing she just thought I was cute, but it's possible that the buttons and zipper on my shorts would have interfered with the scan.

If you've never had a CT scan done, it's actually really cool. It stands for Computed Tomography (CT) or Computerized Axial Tomography (CAT). Basically, a rotating x ray machine takes pictures of your entire body and some computer software builds it all together into a model of your body. Usually, there will be two scans involved. The first is just you as normal. For the second scan, a contrast dye is injected and the same scan is repeated. In many cases, such as mine, a contrast agent is given before hand (the tasty shake) to help the computer images stand out. An additional agent may be injected for a second scan. I had an iodine dye injected for mine.

After my CT scans, I had a PET/CT scan. The CT scan is basically a 3D x ray and only shows physical appearance. A Positron Emission Tomography (PET) scan uses a radioactive compound to show pictures of high metabolic areas in the body. Normally, these are areas like the brain, heart and active muscles. For people with cancer, it will also show cancerous areas because cancer cells are highly metabolic. A CT scan is done at the same time to allow the radiologist to overlay a picture of the body with the metabolic picture from the PET scan.

The first thing the doctor did to me is make me glow. After discussing my current health state, chatting about the weather and sharing stories about changing diapers, he went to get the radioactive flouride solution. If the CT scan was cool, this was ultra cool. He came back in with a heavy (lead?) box. Inside the box is a thick metal syringe with a big radioactive label on it. He promptly injected this into me. Maybe I could plug a light bulb into my port and light up the room?!? The PET scan is very similar to the CT scan except it takes a bit longer (about half an hour) and you can't move at all. The two pictures below are from the PET/CT scan. Unless you're a radiologist, they won't mean anything to you, but they look like they belong on the sci-fi channel so I figured I'd put 'em up!

The only side affect of it is until the radioactive solution gets out of my system, the doctor recommended I not hold Alex. There's very little concern but just to be on the safe side he said leave the feedings and diaper changes to Jen until the morning (darn, I won't get peed on today!).


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July 9th, 2005 - It all starts...

As many of you know by now, I have been diagnosed with Hodgkins Lymphoma, a cancer of the lymphatic system. You can get more information on exactly what Hodgkins is by following the link. Basically, the lymphatic system is part of the immune system. Hodgkins is a cancer of that system. It manifests itself by making the lymph nodes swell. Like most cancers, untreated Hodgkins is fatal. Fortunately, Hodgkins is one of the most curable cancers. It's been treated successfully for over 30 years and ongoing improvements in the treatment have made it more and more treatable. The prognosis for the stage that I'm at is approximately 85% cure rate after 5 years. That means that after normal treatment 85% of the people will have no recurrence of Hodgkins after 5 years. It's important to remember that those statistics are based on treatments from 5 years ago, which continue to be improved.

It all started some time around the end of April, 2005. I got sick and figured I just had a cold or something. Fever, cough, night sweats, aches, that sort of stuff. I also got two lumps, one under my right arm and one on my chest. In typical Matt fashion, my first reaction was to wait it out. After a couple of weeks I still had the cough and lumps had not gone away. With Alex coming in a matter of weeks I was very concerned about being contagious around a newborn and went to the doctor. At first they said I had a sinus infection and was given some antibiotics. After two weeks of antibiotics any infection in my system was completely gone, but I still had the cough. The doctors said that I was not contagious with anything so I didn't need to worry about being around the baby, but we obviously had to figure out what was wrong. A bunch of blood tests were run and a chest x ray was ordered.

The blood work showed that I had been infected with the Epstein-Barr virus at some point (the virus that causes mono), and my sedimentation rate was very high (which means something in my body was swollen....duh...we already knew that!). On June 3rd (the day after we got back from the hospital with Alex) I went in for my chest x ray. The x ray showed that the swollen lymph nodes were internal along my trachea. This is what was causing my cough. After the x ray, a CT scan of my chest was done to determine the extent of the swollen nodes.

On June 6th, the CT scan was done and showed that the swollen nodes were on both sides of my diaphragm I was referred to Dr. Pedro Mendez, a hematologist / oncologist.

During this time an additional swollen node presented itself on the right side of my neck. When Dr. Mendez saw the three swollen nodes and the results of the x ray and CT scan, the first thing he did was order a biopsy. So on June 22nd, I had the first surgery in my life. The procedure was done by Dr. David Echevarria, an excellent surgeon that Dr. Mendez referred me to. A clump of swollen nodes from under my right arm was removed for analysis.

On June 24th, the results of the biopsy confirmed what everyone was expecting. I had Hodgkins Lymphoma. Specifically, Nodular Sclerosing Hodgkins Lymphoma. Due to the results that showed it on both sides of my diaphragm, I was at least stage III. There are four stages to Hodgkins with I being the earliest and IV being the most advanced (IV means it has spread to other organs). Hodgkins is also classified into two different symptom groups. Fever, weight loss or night sweats usually classify the patient as "B" symptomatic, again a more advanced state. Since I had been having occasional night sweats, I thought I was stage IIIB.

Now that I had been diagnosed, we knew that I was going to need some sort of chemotherapy treatment. Dr. Mendez was out of town for a week so in the interim I had what is called a port inserted. This is a small capsule that is put into your chest with a catheter into a major vein. The chemo is administered by injecting it into the port instead of into veins in the arm. It makes it a much easier process to administer and avoids the possible vein damage that an arm IV can cause. So for the second time in two weeks, I went into surgery, this time by Dr. Lori Slezak, one of Dr. Echevarria's partners. In addition to also being an excellent surgeon, Dr. Slezak is cute too!

Finally, on July 7th I met with Dr. Mendez to discuss my treatment. There were a couple of other things that we needed to take care of before starting. First, I am scheduled to have several more tests done to get a baseline for exactly where the cancer is at. I will be having several CT scans, a PET scan and an ECO test this coming week. This will give is a solid, up to date picture of exactly what lymph nodes are affected, as well as an overall analysis of the health of my heart. We are also going to be doing a bone marrow test on July 20th. This will tell us if the cancer has spread into my bone marrow. If it has, the treatment doesn't change but I will be considered stage IV instead of stage III, which makes the prognosis a little worse (but still very good). Dr. Mendez feels that even though I have occasional night sweats they are not frequent enough to warrant being "B" symptomatic. So as of right now, I'm stage IIIA NS Hodgkins. And last but not least, since Jen and I would eventually like to give little Alex a sibling, and chemo has a chance of causing sterility, I have to go to a fertility clinic for, ahem, sperm banking. So if anyone has any extra porno's, send 'em my way!

Once treatment starts, it will be the standard Hodgkins treatment. It is a collection of four different drugs called ABVD. It is administered in cycles with one cycle being two treatments over four weeks (one week on, one off, one on, one off). To start with, we will do two or three cycles and see how I am reacting (by CT or PET scans). There are three possible outcomes. First, nothing could have happened in which case we will switch to a different chemo regimen (called MOPP, a slightly older chemo that is not a first choice anymore because of slightly more severe side affects). Second, the cancer could be shrinking in which case we'll just continue. Or third, the cancer could be gone, in which case we will do two more cycles just to make sure. We're obviously hoping for door number three, but door two is just as good. Door one means the cancer is somewhat resistant and the treatment may be more difficult.

This has obviously been a difficult time for Jen and I (and the rest of our families). It was especially hard being diagnosed with cancer (or at least strongly suspecting) only one week after the birth of our first child. But as with many things in life, we've adapted and are moving on. Many people look at chemo as a bad thing. Not me. Right now it's the best thing in the world and I'm looking forward to starting it more than anything else. After all, it's going to save my life. And if I'm lucky, I won't have to shave all summer long.


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