Woot!

Woot!  Today was my last day of Radiation!

It was the 17th session.  The treatment lasted less than a month.

I haven’t kept up with the blog because I haven’t been thinking about cancer.  Despite a little “radiation sunburn”, I’m feeling great.  The color has returned to my face, and my weight is back up.  I’m out enjoying the nice weather, and for the most part, doing whatever I feel like.

I’m back at work full time.  I’m having no problem staying busy.  I still get worn-out a little easier than I used to, but I suspect it won’t take long for that to improve.

I still have a few more follow up appointments, but probably the single biggest thing between me and the end of this road is the medical port which is still implanted in my chest wall.  I won’t feel quite right until it’s gone.  I haven’t scheduled the surgery to have it out yet, but hopefully they can work me in soon.

After that, I’ll wipe my hands of this mess, and carry on.

There will be CAT scans every 6 months for a couple of years, but beyond that, I don’t think it will take me very long to forget about all the negative aspects of this experience.  My dad said something about this a few weeks back, and although I didn’t quite get it at the time, I think he was right (as he usually is).  When I look back on this, I think I will mostly remember the outpouring of love and support, and the miracle of medicine, and my good fortune in making it through, mostly unscathed, and hopefully stronger than before.

I hope you have a happy 4th.  Celebrate for me!

Great News!

I am officially done with chemotherapy!

I met with my oncologist today, and we went over the results from my PET scan, which was done in Portland last week.  He said there were no “cancer signals” on the PET scan.  This means the chemo was very effective, and that he can no longer see signs of the cancer on my shoulder or in my chest.

YAY!  I’m beating this thing!

I still have a lot of healing to do, but the toughest part is behind me.  Next week I will begin 2 months of radiation therapy, but we don’t expect this to be as debilitating on my body.   The radiation will be relatively low in dose, and very localized to the areas identified by the earlier PET scan (from January).  In the simplest of terms, the radiation is done to make sure the cancer doesn’t have a chance to reform.

I really can’t thank you all enough for all the support over the past few months.  It’s meant more to Janda and I than I can really articulate here.  All the positive vibes and prayers have been working.  Thank you!

An Exciting Announcement from Janda!

Without further ado, before my mom and sister pass out from suspense, here is the exciting announcement from Janda:

Greetings All!

I wanted to let everyone out there know how much Ryan and I appreciate the thoughtful cards, shaved heads, healing prayers and positive thoughts.  It has meant so much to both of us to have your overwhelming support.  And with that in mind, I have another suggestion on how you can help Ryan and the many others that are fighting Hodgkin’s lymphoma.

On October 19, I am running the Nike Women Half-Marathon – A Race to Benefit the Leukemia & Lymphoma Society (LLS)!  Two of my incredibly thoughtful sisters, Autumn and Jennifer, will run with me, and between the three of us, we have pledged to raise $15,000 for The Leukemia & Lymphoma Society!  Team in Training, has raised $850 million dollars for LLS since 1988, by training thousands of people to participate in marathons, half-marathons, triathlons, and centurions.  The money raised by participants is spent on patient services and research to find cures for leukemia, Hodgkin’s lymphoma, non-Hodgkins lymphoma and myeloma.  Without their help, we may not have received such a hopeful prognosis for Ryan, and I am committed to run for him and all the other families that are confronted with these illnesses.  I know the training will be tough, but it won’t be anything compared to what Ryan has been through these past four months.

I hope you will join me in this endeavor and pledge to support Team Rhea!  All contributions are 100% tax-deductible.  You can support us online by clicking one of the links below and you can watch us cross the finish line on October 19 in San Francisco.  Thank you for your generosity!

Ryan adds: Although you can easily contribute online through Janda, Autumn, and Jennifer’s fund-raising pages, they can also accept checks via US mail if you’d prefer.  Checks should be made out to “The Leukemia & Lymphoma Society”, referencing one of the sisters’ names on the memo field.  Janda will be bundling the checks before sending them on to LLS — if you don’t have Janda and I’s address, please email either one of us and we’ll be happy to help.  Thanks again!

Janda: http://pages.teamintraining.org/vtnt/nikesf08/jsiebert

Autumn: http://pages.teamintraining.org/ocie/nikesf08/ajonessnpn

Jen: http://pages.teamintraining.org/il/nikesf08/JenniferTEAMRHEA

Janda, Jennifer and Autumn training in San Diego.  Thanks again girls!

Last chemo

We just got back from my *last* chemotherapy treatment at Celilo.  The wonderful folks there were happy for me.  I got several “congrats”, 2 free tee shirts, and perhaps most importantly I got a chance to thank some of my hard-working nurses, techs, and doctors for all the care they have given me over the past four months.

I will still see these folks for a couple more months, although not as much.  They share a building with the radiation oncology center, where I will be spending a few minutes each day for the next 2 months.  I’d like to do something special to show my appreciation for these folks.  (A note to my family: if you feel so inclined, I’m sure they would love a note or card of appreciation at: Celilo / 1800 E 19th ST / The Dalles, OR / 97058).  I’m not quite sure what I’ll do just yet… maybe I’ll hand-deliver a plate of cookies… they sure did like the last batch Janda made!

In any case, as much as I want to celebrate, I’m not quite out of the woods yet.  I’m feeling pretty horrible at the moment  (next stop: bed), although fortunately that should pass over the next few days.  I’m scheduled for a PET scan in Portland next Wednesday (May 28).  I will then have a follow-up appointment with my primary medical oncologist the following week (Jun 03).  The PET scan will help determine conclusively (we hope) that the cancer has gone into remission as much as expected.  Considering the growth on my shoulder is no longer visible, or even detectable with the doctor’s touch, I think we stand a real good chance.

The second purpose of the PET scan will be to help with the precision alignment of the radiation equipment.  They try to zap only the cancer cells, sparing the surrounding tissue, in as much as possible.  They use a series of lasers and (as I was just informed today) a tattoo on my skin to make sure they’re hitting the correct location(s).

So, if all goes well, I will be starting radiation in about 3 weeks.  It will last 2 months.  It won’t tax my body like the chemo.  In fact, other than a few localized side-effects (skin irritation, etc.), I should start my (slow) return to good health within a matter of weeks!

Let’s just hope and pray that the PET scan results come back as expected.

Thanks!

I would like to express my sincere gratitude once more for all the love and support you all have sent my way!  You continue to amaze me with your generosity and concern.

I have never seen so many greeting cards before, at least outside of the greeting card aisle!  I’m simply blown away.  There were 50+ cards that came in over the last couple of weeks, and our kitchen table can’t hold any more:

So many cards!  (click the image for larger version)

I’m feeling pretty strong going into the last month of chemo.  The positive vibes and prayers must be working.  My extended birthday celebrations over the weekend provided a hiatus from the usual routine.  We made it down to Portland for a concert with a couple of friends on Saturday night, among other fun activities over the weekend (which admittedly started on Thursday for me).  Janda and all of you continue to spoil me.

I’m not exactly working overtime right now, to say the least, but I did make it in every day last week, and I’m able to help out with small projects here and there.  Just a few more weeks of chemo, and then I should be back in the saddle!

Stay tuned for an exciting announcement from Janda and two of her sisters…

heading into chemo #6

I haven’t posted an update for a while.  Thanks to all of you for checking on me.  I’m doing OK.

I didn’t want to write an overly pessimistic post.  My girlfriend wisely told me that every post didn’t have to be positive.  In retrospect, I think it was mostly about not putting myself into a negative feedback loop — sometimes writing about feeling bad can make you feel worse.

I will admit things have been harder for me lately.  Physically, the chemo caused notably more discomfort this round.  In particular the nausea and general stomach discomfort have increased.  I think my stomach (and intestinal) linings have been pretty much decimated.  Food doesn’t settle right.  This makes sense if you think about it.  The chemotherapy works by attacking fast growing cells — this includes the cancer cells, of course, but it also includes most of the cells in the digestive system.  My body tries to rebuild the stomach lining after each treatment, but after 5 of these treatments, I believe my stomach is effectively too far behind to completely rebuild before the next treatment, so the symptoms get worse over time.

Mentally, I’ve been trying very hard to stay positive, especially going into treatment tomorrow.  I’m trying to focus on the healing aspect of these powerful drugs, instead of the negative side-effects.  I believe there is a lot to be said for the power of positive thought (more than we really currently understand)… so wish me luck with that!

add one to the head shavin’ gang

My handsome nephew Noble is also sporting a new ‘do for the cause.  Thanks Noble!  

Here he is having some fun on Easter.  You can check out more pics of my sisters’ family on her blog:

http://www.thegray5.com/

My sister and my niece Nora Jane are headed here to Oregon for a visit this week!  We’re looking forward to it.

I’m feeling a little better today.  The past few days in general have been a little tough for me.  The chemo seems to be getting a little harder on my body as I progress through treatment.  I think my body is getting further and further behind in its self-healing with each cycle.  Some of the symptoms are more pronounced.  All in all, though, I’m keeping my bald head up!

Shavin’ Heads

Today around 20 co-workers shaved their heads as a sign of support, and as an impromptu fund raiser for the American Cancer Society. Bids were taken for the rights to shave our site manager’s head, among a few other good sports who agreed to go “under the clippers”. There were some hilarious moments.

In the end I think we raised almost $500, and my company has a policy of matching donations to charity, which means we’ll be sending close to $1000 off to the A.C.S.

Here’s some proof:

In case you don’t know what I look like (I have lots of new friends of friends reading the blog), I’m wearing the tan shirt with stripes.

chemo #3, with a slight detour; also, more on heparin.

We had a pretty long day at Celilo and the local hospital next door (both are part of the same campus). We arrived at Celilo for a blood draw and consultation with the nurse at 8 am. This is the routine we’ve gotten used to — before the chemo, they draw my blood, we wait 45 minutes for the results (it’s actually quite nice they can do it so quickly on-site), and then we meet with the wonderful Nurse Practitioner, Nina. She goes over the various blood levels (white blood cells, Neutrophils, platelets, liver enzymes, and so forth in great detail), and talks to us about how I’m doing in general. This is when she always asks about new symptoms.

Well, I have a new lumpy-looking thing on my right arm, and it apparently alarmed her enough that she ordered me across the street to the hospital for an ultrasound and an x-ray, before she would let the team start my third treatment. They were worried it might be a blood clot, as it’s near the “port” they use to inject the chemo drugs. It wasn’t. My ultrasound didn’t show any clots in my neck, shoulder, or arm (they ran it down the length of my arm for good measure). For the x-ray, they used an intravenous imaging solution (a radioactive dye) to make sure that the port and associated tubing hadn’t slipped out of place. That looked okay too. By noon we were back at Celilo.

This treatment was about the same as the previous two. We had a couple of clowns visit. They were probably in their 70′s, and a little scary, but lucky for me I’m too old to be scared of clowns.

I’m feeling a little queasy, but mostly at the moment I’m just feeling a little amped from the steroid injection. (I should get a set of weights and bulk up!) I likely will be feeling ill later tonight and into tomorrow, but it’s all tolerable, especially given the light at the end of the tunnel.

So… you may be wondering what was wrong with my arm. Honestly, I have no idea. I couldn’t really get a straight answer on that. I commented to Janda earlier today that I often don’t get straight answers to my questions (and admittedly, I ask a lot of questions). I’ve come to the conclusion that they just don’t have all the answers. I guess it’s not worth spending too much time (or money) on a lump in my arm, once the obvious and potentially harmful causes are ruled out. They did their due diligence, and I’m not in any pain or discomfort, so it will remain a “mystery lump” for the time being.

Also, I have an update on the Heparin situation. The Heparin in stock at Celilo was not part of the Baxter recall. The pharmacist was well aware of the situation, at least. I was mistaken when I earlier posted that they use Hep-lock at Celilo. They receive larger bottles of Heparin and fill the syringes with the correct dosage right before injection. In short, I was satisfied that they are doing their job and are staying on top of their inventory (2 pharmacists on site helps!), so it seems there is nothing to worry about.

Thanks again for all the comments, emails, and cards! Sorry I haven’t written all of you back yet. Janda and I both appreciate the support.

more on contaminated heparin

Okay, so maybe it’s not so irrelevant. The Herparin story isn’t going away. Here’s an except from a story at washingtonpost.com:

Using a new sophisticated test, the Food and Drug Administration has found a “contaminant” in 5 to 20 percent of samples of the blood thinner heparin distributed by Baxter International, agency officials said today. They also increased the reported number of patients who might have died from allergic reactions to the drug from four to 19.

from: http://www.washingtonpost.com/wp-dyn/content/article/2008/03/05/AR2008030502476.html?nav=rss_email/components

I’ll be asking the doctor at Celilo about this.

I’m still doing well. I’m at work this week, feeling pretty normal again.

edit: time.com is covering this as well:

http://www.time.com/time/nation/article/0,8599,1719741,00.html?xid=rss-topstories