There is only one important time and that time is now

Despite your opinion on how this should be done, I want to ask you all to support some kind of change in our health care system sooner rather than later. If you are fortunate enough to work hard, earn your health insurance, access preventative medicine and annual cancer screenings and afford to pay your health care bills, very good for you, you are living the dream! We have been amazingly well supported through Garrett's employer based private insurance, but so many cancer patients and other sick Americans are not that lucky. We are forever grateful for the insurance coverage we have had so far, but built into the system are so many catches, inequities, inefficiencies and flat out disasters that it is not working to support our country's general health or especially those with catastrophic health conditions like cancer.

I will not claim that the proposal out there now is the magical answer to all our health care problems, but trying to do something better is long overdue and it is my wish that we try something new at this point. If it does not work and/or needs adjustments I will be speaking up about it again in the future, as we all should. But I believe the worst thing we can do now is wait longer, fight about it more and let cancer patients continue to reach their lifetime benefit limits, delay diagnosis or treatment, get denied and dropped, or go bankrupt paying for their own care. No matter how you feel about our government's current social assistance programs or the inclusion or exclusion of a government run health insurance option, this is a matter worth moving forward on. And then continuing forward, making changes to it as many times as necessary to improve the health and life of us all, especially those who don't have any choice in the matter of living with cancer.

A simple way to show your support is to sign the American Cancer Society Cancer Action Network's petition to congress. It simply says that you support taking action now, making forward progress without delay.

The week off... almost

Yesterday we had a follow up with our radiation oncologist. He wanted to see Garrett a few weeks after finishing hyperthermia and go over any symptoms lingering from radiation that we did to the skull a few months ago. Garrett has had ongoing issues with vision and headaches, then just this weekend I noticed two spots of hair loss each a few inches wide on the back of his head (in the exit path of the radiation beams). The hair loss is a clear radiation side effect, but with others we can never be exactly sure what is causing them since anemia, iron toxicity, chemo and the concussion could all be contributing factors.

Since what we assume are radiation symptoms have not been getting worse our doctor was not concerned by them and good news was the strangest of all the symptoms has been decreasing in frequency. That symptom is random short term tongue swelling/control that slurs speech, controlled by an area of the brain near to the skull tumor we radiated. Since its occurrence is decreasing our doctor thought the radiation probably did its job on the tumor and swelling around the treatment area is likely diminishing so that the speech trouble would eventually stop completely. The vision issue he was less sure about, if it is a side effect of radiation at all or if it will ever go away. Instead of sending Garrett for more uncomfortable head scans, he said to keep track of symptoms and come back if any one is increasing or becomes too bothersome. We appreciate his reasonable approach to every thing.

They took more photos of Garrett’s skin tumor to document the hyperthermia treatment progress, but we can’t see a big difference on the surface yet. We hope that bleeding is a part of the healthy tissue’s return because that has been an occasional problem over the last few weeks and we are so looking forward to the healing process. No chemo this week, but next week should be dose #4 and we hope that it too is doing a number on the cancer in all areas of his body. The low dose does seem to be catching up with Garrett a little, but maybe he is also getting closer to needing another blood transfusion.

The rest of this week, appointment free, is a little breather but will no doubt fly by as all good breaks in life do.

World Record Chemo Infusion

I was just sitting here this morning thinking about my chemo infusion that I received yesterday afternoon and how unbelievably smooth it went for the first time ever. After multiple frustrations on MaryEllen's part and having to rearrange multiple schedules, the nurses between the two offices that Dr. Ye uses during the week, finally determined that the only way we could see the doc this week was to travel to the old office we used to visit.

In December or November or when it was, Vista Oncology opened this nice, new state of the art office with bigger waiting rooms, bigger chemo suite, more overall rooms to see patients in and in general just more toys like flat screen tv's, etc. Well, we have seemed to notice that while the bells and whistles are nice, everything has been getting backed up and sometimes I get lost in all the hustle and bustle, sometimes spending up to 3 or so hours for an appointment that should realistically take half of that.

So anyway, this week we headed over to the old office which is still in function, it's just about twice the distance to drive from our house . Turns out though, what we thought was going to be a pain in the butt, turned into one of the smoothest appointments we have ever had. We got to the office, which is usually a packed waiting room to see two other people there. It took the nurse about 5 minutes to get to me and do vitals then stick us in a room to meet with the doc. After a brief meeting with him just to check how things are progressing, we went straight back to the chemo suite where Dr. Ye started my IV personally and we were on our way. The premeds were out in 5 minutes and the whole process was over in no time. It was just so refreshing.

Just goes to show that bigger doesn't mean better. The old office basically has one receptionist, a regular nurse taking vitals, a chemo infusion nurse and a nurse taking and running the blood results and Dr. Ye of course overseeing everything. In contrast the "new and improved" office has multiple nurses I have yet to meet, receptionists I haven't seen before and often people sitting at a desk not appearing to much other than busy work.

The only problem with this perfect scenario is that Dr. Ye only works out of the West Side office on Tuesdays and maybe one other day, otherwise he is just caught up in the madness of the new office. So I think I am going to try as hard as I can to make it on my planned chemo days to the office that seems to function.

It was a pleasant surprise yesterday to walk out of getting chemo and not being the least bit grumpy. I even went home and cooked a full meal for MaryEllen and myself, which isn't really something I have done in months, of course it didn't hurt that she was in a bad mood and I wanted to try to do something nice for her.

Overall though, round 3 down and promising ideas to make the future go a little smoother on chemo days.

The Bathroom Incident

So I haven't been really update on the blog for at least the last week or so, partially because of a lull treatment but I have also been out of commission for a few days. Last leek I had a little accident, that I have almost done a million times in my life but last week I actually accomplished it. I am sure I am not the only one to ever do this but have you ever been putting jeans on and just about tripped over your own feet? Like I said, I have almost done it a million times but last wednesday I actually did it.

I don't know if it was just being lazy, in a hurry or being weak from low blood levels but as I was getting ready to go to the hospital to get type and crossed for my transfusion the next day I bit it big time. It also just happened to happen in the worst place possible, in the bathroom. So what happened is as I was putting my jeans on I just simply tripped over my own feet when a foot got stuck in the jeans. Well being where I was in the bathroom, I did not have anything to catch myself and brace my fall. I ended up falling head and shoulder first into the bathtub. It was definitely the hardest I have ever hit my head and was just inches from the corner of the tub, which probably done even more damage. Lets just say it scared the living crap out of me and I thought I had done some serious damage. But, being the hard headed idiot that I am, I just went on my way to the hospital and didn't tell anyone until later, I think I was just in shock from it all.

Well, that night it started to hit me what I had potentially done. I had a massive headache the rest of the night even after multiple pain relievers and ice packs. Then I woke up in the middle of the night, throwing up multiple times. Basically all the symptoms of a pretty good concussion. The next day I began to slur my words. Its like I knew in my head exactly what I wanted to say but it just wouldn't come out like I intended. I think that was the most frustrating of it all was not being able to articulate what I wanted to say, it was the weirdest feeling.

So now that all the cobwebs have cleared and the after effects of the concussion have worn off, I feel pretty dumb looking back. I am really shocked that I did not do some real damage, I guess I have a harder head and shoulder than I thought I had. I am still pretty sore in the neck area kind of like a whiplash but it could have been worse. I guess that will teach me to put my pants standing up.

So yeah, that was my story for the week. I am glad to report for now that I am feeling better and back on the mend and am now concentrating on recovering from the adria treatment I had this afternoon. So far so good, I am just hoping that I don't get the extreme heartburn that have been getting the last couple of weeks.

All for now. Moral of the story I guess is don't take something for granted just because you have done it thousands of times before, you may not be able to do it the next time around (well that is if you are a clutz like me :) ).

What can we do?

As suspected, a blood transfusion (red blood cells) is in order this week. Some times the symptoms he feels from low blood counts go away right after the transfusion, other times he perks up a few days later. Either way, it is good to stay on top of his anemia and get transfusion before he gets too terribly low.

This is probably the first of many posts I will write on this topic, but it is a broad subject and a common question. The answer is different every week and for every one of you, but I will try to put a new post out there whenever things change for us. The question “is there anything we can do to help?” is so wonderful to be asked, but sometimes so hard to answer. Most of us have a hard time asking for help and just as hard a time accepting it when offered, Garrett and I are no different. But I will strive to ask for and accept help when we really need it because a lot of small things can really lift some of our burdens and hopefully empower all you givers out there too! Here are a few things to start out that you can do right now:

- Check yourself! Get annual exams including cancer screenings. Most cancers are very treatable (or preventable!) when they are caught early. The sooner you can face the issue, the less difficult the solution will be. If you do this one thing we (and the other people who love you) will not have to worry about you :) which is a great relief.

- Have health insurance and disability insurance. See below about contacting policy makers to improve affordability and access.

- Live a healthful life of moderation (easier said than done, I know!) be physically active most days, get outside in sunshine (without sun burns) or supplement vitamin D, eat fruits and vegetables everyday, weigh in a healthy range and find ways to be happy! No one food or life choice keeps us cancer free, but the sum of healthy habits seems to lower our risk of cancer.

-Contact policy makers about supporting comprehensive health care reform, cancer research funding and education/access to pain and palliative care services. Join the American Cancer Society Cancer Action Network and they will alert you about upcoming votes and facilitate communication to lawmakers.

- Donate money to your favorite health, cancer, or patient support nonprofit organization. Garrett’s friends organize a Relay for Life team every May to raise money for the American Cancer Society, my friends Tessa (and Becca and Kristine) raise and run for The Leukemia and Lymphoma Society and you probably know someone else who is involved and taking donations!

- Some organizations need your time and talents in addition to funds. The Pink Daisy Project arranges support like house cleaning, reduced cost childcare and grocery shopping and meal prep assistance for breast cancer patients, helping young mothers like our friend Ellen’s sister during tough treatments. Volunteer your skills, walk or run in a fundraising event yourself, call your senator… actions small and large will support our family and other families facing cancer.

That’s all for now, surely more to come! If you know other organizations doing good work, share them here and with everyone else you know!

The Engagement Anniversary and Story

So this post has nothing to do with cancer or chemo or any of that depressing stuff, just my views on Valentine's Day and the story of MaryEllen and my engagement.

First off, it's strange that I chose Valentine's Day to propose because I have always despised this made up "holiday". Why is there a holiday where a man is required to buy something expensive and do something nice for his partner? Sounds like every other day of the year to me. I don't need a random day out of the year to remind me to love my wife, I hope I show her that every other day of the year. Luckily I have a wife that I think feels the same way. We don't celebrate Valentine's Day other than sometimes getting each other cards but for those that don't know, today is the anniversary of the day I proposed to MaryEllen.

Anyway, enough on the anti-Valentine's Day rant. On February 14, 2007, I was still bed ridden from back surgery and thinking of what I could possibly do to make that day special. I couldn't walk at the time so there really weren't that many options. I had known for quite some time that I wanted to propose to MaryEllen, I just didn't know how or when, plus I had some major reservations to take on such a task when I really didn't know yet if I would ever be able to walk again. It's pretty tough to ask someone to marry you when you don't know if you will be able to provide for that person. But back to the story. I was on the internet like a usual day in that time and decided "What the hell, it's time to do this". I don't know why it was that day, maybe it was to make the day special for the rest of our lives or maybe it was just to get over my hatred for the holiday.

So, what I ended up doing was buying a promise ring so to speak online until I could physically get out and get the real thing. At the time, my Mom was living with us to take care of me so MaryEllen could remain working. So I had her run over to the mall and pick up the ring and a box of chocolate truffles. We ended up putting the ring in the box of truffles and I think I gave it to her with some flowers or something like that.

The plan was for MaryEllen to open the box of truffles and I would ask her if she would marry me, nothing too creative but it would get the job done. Well it turned out she just took the box of chocolates and kind of tossed it aside without opening. I was thinking crap, I don't just want to say open the darn box so I started asking what a truffle was acting like I didn't know. She responded by saying a certain kind of chocolate and still didn't get it. Finally after a couple more frustrating questions I asked her if I could try one so she would have to open the box. She was getting kind of annoyed to the point where I thought she was going to just throw the box at me, but alas she opened the box and saw the ring and got kind of choked up and I was finally able to propose.

Afterwards she will tell you she felt kind of bad for giving me a hard time about opening the box but all in all I am glad it happened how it did. If it would have went off how I had planned it would have been just another boring story of a proposal on Valentine's Day. But it turned out being really fitting to our relationship, kind of humorous yet very difficult at the same time. I never thought I was going to have to work so hard to get MaryEllen to open a box of chocolates.

So that's the story for those that didn't know the specifics.

Quick Chemo Update

I am just sitting here bored watching horrible TV and thought I would post a quick update. So I got my second round of adriamycin last monday and so far I can't complain too much. There is the usual fatigue and occassional nausea but so far its been nothing like the first time around that put me in the hospital. Major heart burn is really the only constant side effect that is continuously bugging me. It's gotten to the point where it wakes me up at night and I can't seem to do anything about it. What doesn't make sense to me is that it gets triggered by drinking cold drinks. It might just be my dumb self but does it not seem counter-intuitive that an ice cold drink would give you heart burn? My common sense tells me it would help relieve it but...

Anyway, I can tell my blood levels are getting low so I am pretty sure there will be a blood transfusion in my schedule this week. It has been 4 weeks since my last one, which is longer than we have been able to go the last few months between transfusions so that is a positive sign that we may be seeing some re-growth of my own bone marrow. 4 weeks while on chemo is definitely a good sign in my book, I am hoping we can keep that up and maybe even stretch it to 5 or 6 weeks.

How can I tell when my blood levels are getting low? It's actually really easy for me to tell when it's transfusion time. There are basically 3 or 4 obvious signs.

1) I start feeling my own pulse in my ears. This is really annoying because my hearing starts to get worse, especially late night when watching tv. The pulse in the ears is especially annoying when trying to go to sleep.

2) Next is an increase in headaches. According to my nurses this is a result of low levels of oxygen getting to the brain which makes sense.

3) Rapid heart beat. When my blood levels are really low, I can put my hand on my chest and it feels like my poor heart is going to blow out my chest. Due to the low amount of blood, the heart has to work over time to pump what little is left to the rest of my body. My nurses always look at me funny around this time because when they take my pulse and/or blood pressure, it is way higher than the average person. You would think they would be used to it by now and figure it out but every time they ask me if I have been exercising or something stupid like that. Me exercise? Ha!

4) Finally the extreme fatigue comes. When it gets really low, I just flat out feel like I am going to pass out just walking out to the refrigerator to get a drink. This is definitely the most annoying of all the signs since it basically just leaves me bed ridden.

So happy Valentine's Day to all you suckers out there.