Sunday, July 13, 2008

Port issues all done

So my port developed some bleeding and clotting after I had it removed. This had to be removed and then left open to heal :(. So imagine a cigar width hole in you chest about half and inch or more deep open for approximately 2 weeks. Not joking. I had to pack it with gauze twice a day. In lay terms, "packing" involves PUSHING gauze into an open wound on one's chest. Weird feeling for sure. It has been healed now for some time, but the scar is probably a little more hardcore then it would have been.

All for now :)

Friday, May 23, 2008

Im-port-ant news

Man oh man. I am trying to close down this chapter of life, but not so fast. Over 2 1/2 weeks ago I had my port removed. Supposed to be business as usual, but afterward, I ended up getting a hematoma over the area (a big blueish/black golf ball size lump where my port used to be). I first went back to my general surgeon and he "let off" some pressure. He told me it would go away on it's own in a few weeks (WEEKS?). Then, after it "burst" on me, I went back and they removed (NOT FOR THE FAINT OF HEART)....3 raisin-sized clots and a bunch of old blood out of it. They packed it with gauze and gave me instructions for caring for it. After a couple of days, it started getting GREEN and now I go back today to hopefully get it all removed and restitched up.

Moral of the story: Don't take the port removal for granted.


Wednesday, April 9, 2008

Pet scans all clear

Had my scan yesterday and I got the results today. All clear three months out. I think this is the scan that most people worry about. I get the feeling, the farther out you go, the less it worries you. I can't imagine never worrying about it coming back, but I will take this for sure.

I do want to continue to post information here, because I think it is helpful, but I am trying not to use it as a personal site...mostly because I am boring :)

Here's to more boring...

Sunday, March 23, 2008

Back from the Puerto Rico. Had a blast, made some money at the casino and tortured the liver a bit. We missed the kids and spent the entire weekend back taking them all over NoVa. They had a good Easter today and didn't eat too much candy. Check the old lady's blog for more on that.

On my front, I am shooting for my Pet Scan in a couple of weeks and have a follow up Dr.'s Appt shortly thereafter. I'll get the results and pics out as soon as I get them. Here's to Spring getting here finally!

Saturday, March 1, 2008

Quick update and reflections

I have been feeling like a slug of late and find my attempt to diet impeded by my renewed interest in beer. I was "mostly" dry during treatment. Dry being alternatively used for being without alcoholic beverages and my mouth physically being a desert. Since my last treatment I have enjoyed a beer or two during the evening while watching my choice of sport. On top of that, during treatment, I lost my taste for diet sodas and increased my use of chocolate. Breaking both of those habits has proven to be difficult. Work is doing a pool for "biggest loser" and I joined it, so I now have financial motivation :)

I am doing fine. The trip to Puerto Rico is a couple of weeks away. Home life and kids are fine. Going through some transitions at work, but nothing too crazy. Other then a port flush a week ago, I haven't been back into the doctor's office. They are scheduling the PET scan for second week of April, so we are looking forward to that.

Quick observances now that treatment has ended:

- During the initial diagnosis and throughout treatment, I was extremely comforted by the fact that I got a good deal of life insurance (outside of work) when we had the girls. As a father to many now, I worried less about the financial impact of the worst case scenario. This could be one of the best decisions I have made. If I wanted to get life insurance now, I would assume that it would be pricey and difficult at the least. Take it for what it's worth, but young and healthy with young kids is probably a good time to purchase (at the least a 20yr term deal).

- The other running for the best decision I/we have ever made also is a insurance policy of sorts. My wife talked me into storing the cord blood from one of our triplets while she was pregnant with them. It didn't take much pleading and we got a little bit of a break in the upfront costs. The yearly costs seemed reasonable as well. We did so and Evan, our oldest by a minute, had the largest cord for harvesting. People read of stem cells in the news, and most of it is based on ideology. Most of it also talk about the cells originating from "pre-birth" donations, contributing to it's political question. Also, most of the focus is on all the things they "could" do in the future. However stem cell transplants are used daily as last resort treatments for blood cancers. These can be "cleaned up" cells from the same host or a donation from a matching person. One of the linked blogs on this post is for "Journal of a Prize Fighter" and he had one a few months back. It's a very neat process as it is the only transplant where the GRAFT rejects the HOST instead of vice-versus (i.e. the blood rejects you, not your body rejecting the blood). Anyways, to think that my son (who isn't exactly the most vocal dude out of the bunch) could have contributed to giving me, his mother or anyone of his siblings a possible option for future treatment is extraordinary. Made even more so by the fact that Hodgkin's is a cancer of the blood.

If the statements above mean anything it's that, in our case, we couldn't have scripted a better safety net for what I have went through recently if we had KNOWN it was going to happen years ago. I will credit my wife's persistence in getting this done for both cases.

I have made a bazzillion mistakes in my life, these would be in the small bucket of smart moves.

Marathon post over :)

Friday, February 8, 2008

Long time coming...

That somes it up. I feel like a big fat cat. BUT, I am growing hair back. It's a bit darker on my head and lighter everywhere else, but i'll take it.

I am feeling better now and I am now over two weeks out since my last treatment so things should be working their way out of my system. I am going to wait a week or so and start hitting the workout bike and watching what I eat. Turns out donuts and Cadbury cream eggs isn't as healthy as one would think.

Just sending a little update out that all is fine. I need to schedule my flush for this month in a week or so. Counting down the days till Puerto Rico and then my PET scan.

Thursday, January 24, 2008

12 is done!

In the words of my red haired son Will: All Done, All Done, All Done.

If I can stay healthy over the next two weeks, I will be a happy guy.

On Deck:
- Port flush once a month till I have it out.
- I will have it out once I get another negative PET scan in 2-3 months (remember, negative is good).
- Then I will be be periodically checked FOREVER :D

More to come later, including comphrehensive #'s for each session.

Wednesday, January 23, 2008

Belly issues

I chatted with my nurse and she said the doctor wants to have treatment this Thursday and would hold off on the Nuepogen unless it is needed. I want to finish it sooner then later (in fact I want to be done), but I don't think I can do tomorrow. I was up in the middle of the night with a stomach bug that came out of NO WHERE.

I think I am going to call and reschedule.

Saturday, January 19, 2008

On the mend?


Last night after an "All day" stay at the Hospital, I ramped up once to a fever of 101 before things came down due to Ibuprofen and/or Tylenol. They had asked me to come back this morning to get a new CBC and check whether the Neupogen shot worked. It did, my WBCs went up from 1.1 to 6.7 and I assumed my ANC was up drastically as well, but I didn't get that #.

I feel a bit better and I am still taking the 7 day supply of the anti-biotic Levaquin. I have had three doses to date. That coupled with the Vancomycin they infused yesterday should have my bases covered. We'll see. I feel better and when I do feel hot, it isn't shooting up like it did Thursday evening.

Needless to say, I am not a big fan of treatment next Thursday and will be asking for the treatments to be discontinued at 11 of 12. This is no doubt the worst I have felt during this process and the thought of hospital stays doesn't sit well with me.

All of the nurses and docs were great during this, especially since my Oncologist was out on leave. There is a great Nurse Practitioner name Rodney who really took care of us.

More to come later.

Friday, January 18, 2008


Jon wanted the post to be titled that... For the record...

Anywho. The past 24 hours have been eventful to say the least. We've been threatened with hospital admissions, taking many vital signs at home, lots of advil, and fever. FEVER. You heard me correctly. Jon spiked a fever yesterday afternoon after coming home from the treatment that wasn't. We weren't too worried at first, but when it came up and hovered around 101.5 I called shenanigans on the whole deal and told him a phone call to the Doctor was in order. Our on call Physician ordered us straight to the hospital, unfortunately my timing wasn't the greatest when making the phone call. It was 5pm, dinner was being served to the kids, the au pair was off in an hour, and we had just gotten over 4" of fresh fluffy icy snow... How on earth was I to get him to the hospital? So we did what any normal kids would do... We called our parents. Jon's folks got on the road immediately and arrived just in time for his fever to break and for him to inform me that we were NOT going to the hospital. Bullheaded he is. Smart, he is not. Anyway, I listened to his reasons for not going, and called our Doctor back. She agreed (halfheartedly) and went to talk with another Physician on call. They called us back with parameters by which he absolutely HAD to come in... We agreed and the rest of the night went fairly uneventfully. We were pleased to have Jon's folks there in case of a middle of the night emergency, I felt much more prepared. I would hate to have to wake our neighbor up to have to come and sit with the kids...
This morning came and we drove off to the Infusion office, they were very accommodating... Everyone seemed to be aware of our situation and how important this was. It certainly made us feel well taken care of. After getting settled in we were seen by a whole myriad of folks and got his blood drawn for cultures, as well as a shot of neupogen to help boost his white blood cell count. We're currently receiving a dose of vancomycin... I'd like to say that it's been going smoothly, but much like the past 24 hours, it's been a bit bumpy. Jon looked over at me about 30 minutes ago and I thought he looked pink. When he itched his head I tried to brush it off. 5 minutes later, I looked over and he resembled something out of a crayola box. He topped off the red coloring with a vigorous face rub. I then asked him if he felt ok... He looked at me with his beet red face and said "uh huh. I'm fine" Sure you are... This would be where I slowly got up from my chair and grabbed the closest Nurse to me and said, "Yeah... We've got a problem" and pointed at the glowing man that was once my husband. It was pretty rapid that every SINGLE Nurse in this office was on my husband... Vitals, Saline, Monitors... Freaked out wife... No matter how versed you are in this world, it still freaks you out when it's happening to you husband, the father to your kids, the big cheese people! Anyhow, he's currently a more normal shade of pink, and looking pretty good. They've restarted him on the antibiotics again, and hopefully we'll have no more itching...On the downside his fever is beginning to creep up again, what that means I have no idea... But regardless the day has been really long, long day. LONG. I'm ready for a nap, a drink, a chocolate bar... Something. Jon is doing so well, he's being such a trooper. As usual he's making all the Nurses laugh, hamming it up with the other patients, and trying not to ask for much from me. We'll keep everyone updated as new things arise, but at this point we're hoping for no news. If you're praying for us, keep on praying!

Thursday, January 17, 2008

Kibosh part duex

Well maybe Part III or IV but you get the idea. They treated me like the laser disc above and trashed me. BTW, I don't know who that is in that picture so "jone" away on her. I went in today and had the lowest ANC for me ever. 190. Enough to be put on prophylactic antibiotics and sent on my way. Last one too. So they rescheduled till next Thursday all things permitting.

Trying to be positive of course, but I do always feel a bit inadequate from a biology perspective when this happens. It shows how little control over your system you have in the form of diet and other preventative measures when it comes to white blood count at least. I didn't feel great yesterday (which I normally do 2 weeks out from treatment), so I wasn't 100% surprised. Overall my levels have been lowest after feeling under the weather.

Well, lets wait a week, take my meds and give it another try.

Friday, January 11, 2008

"Middle of my last week" update

Okey dokey. I have gotten tons of love from my blogging peeps who have or had the hodge recently. They have shared their post-hodge plans and they range from the rough (more treatments then I am having and/or radiation) to the uneasy (too early a scan showing some weird anomalies) to the great (quick scan, all is good, go forth young person). With this feedback I feel better. Although I would prefer to have a scan done quickly after next Thursday (and then have my port remove). I also don't want to do anything to "jinx" it and now have proper perspective on what is more important.

I am feeling good and my belly and taste buds are back on-line. I am noticing hair growth again on my hands and other areas where it was lost. Sweet. Now if I can work on some eyebrows :)

I got some really cool news at work today. I was given an end of year award they give to only four people (out of hundreds) which includes a trip to Puerto Rico (YEAH!). I was really happy and also a little embarrassed, but that's how I get. They surprised me by getting my wife there when they announced it. Really cool. In the past six months, I have taken 1 day per treatment (10 in 2007, 1 so far in 2008) and at least 7 others for scans, port and biopsies. I have tried to stay as engaged at work as before and in some cases tried to overcompensate. I was really worried about not being as available as I should be or causing a greater load on others. It was nice to just be put in for the award and then, to be one of the winners....unbelievable. Working through this has been very theraputic. If I wasn't feeling good, it actually distracted me by keeping me busy. I'll "lower label" this post "reasons to work through treatment".

Thursday, January 3, 2008

#11 in the books. One to go.

So we talked with Dr. Houck and found out the following:
- After my last treatment in two weeks, we won't see him for three months.
- No radiation like the plan was all along.
- Prior to that appointment, we will have a PET/CAT scan done.
- I will need to come in once every 30 days or so to get more port flushed.

My WBC count was 2200 this time, which is inline with the past. I feel better from that cold.

Today I pretty much slept through the entire time. My wife and I look like total mooks in there with our laptops on. Just about everyone in there is 55 or older and we look like complete marks for. I was really sluggish today and my belly wasn't doing well, so I just laid up stairs.

Sandy, Mary Jane: What are the plans your Drs have for you (outside of the radiation) for when they will do a follow up scan?