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.

Blog Questions or Comments

So I want to thank the followers of my blog for caring enough about MaryEllen and I to keep track of what is going on in our lives and paying attention to our ramblings. I know just post after post of words can get boring so I just wanted to ask really quick if there are any suggestions out there on what can make the blog more interesting? The point of course is to inform our friends and family of recent medical issues that I am having but I don't want you to be bored as heck reading.

So, with that in mind, anyone got any suggestions on what to do to make things more interesting? More pictures? Less writing? Feedback is much appreciated, although I believe MaryEllen has done an outstanding job so far.

Where it all happens

I wanted to take a photo of Garrett while he was getting chemo yesterday, but it was so busy that I didn't want others in the room to feel like I was taking their picture too. But today Garrett had to stop in for another blood boosting shot, so he got a picture of the chemo room. The recliner chairs are pretty comfortable and two large televisions are ceiling mounted (but usually have The Tyra Show on, ugggh) Garrett usually brings some music, sleeps or goes online on his phone while the infusion takes 1-2 hours.

Chemo dose #2 + iron toxicity

Second dose of Adria down. Garrett had decent blood counts this week, with little red and white cell decline since last Monday and increased platelet counts from transfusing them last week. It is a bit early to conclude, but our oncologist is hopeful that this is a sign of bone marrow recovery. It is a delicate balance, but we may bump up the chemo schedule in a few weeks since his marrow seems to be tolerating it so well. Any sign of response is a great thing to sustain our hope.

In addition to blood transfusions, we have a few other tools to combat chemo induced anemia (low red blood cells) and leukopenia/neutropenia (low white blood cells). After Garrett’s chemo infusion today he got two shots; one drug to stimulate red blood cell production called Procrit and one to prevent low white blood cells call Neupogen. These shots seem to help when Garrett’s bone marrow is already responding to chemo. At the time we tested his bone marrow and found it mostly replaced with cancer, these drugs were not strong enough to overcome the cancer. And at that point Garrett’s insurance company decided to stop paying for the (judged ineffective) shots.

With a few promising chemo treatments under our belt, our doctor was able to petition the insurance company to re-gain coverage for these drugs. Combined with an effective chemo the shots do seem to help to reduce or delay Garrett’s need for blood transfusions. This is especially important because with every red blood cell transfusion the body acquires iron. As I understand, in normal blood production the body is helped by and uses up iron, but when you are not making your own blood the extra iron just builds up after each transfusion and cannot be disposed of by the body. Overload of iron (transfusional hemosiderosis) can happen after 10 – 20 transfusions and results in fatigue and eventually organ damage. There is one expensive drug to help your body eliminate iron, but it caused Garrett to puke each time he took it! So we went back to trying to get his marrow working with chemo and delaying transfusions whenever possible. And fewer transfusions make Garrett a happy man!

Chemo Tomorrow

This is just a short post to inform those who follow that tomorrow is scheduled to be my second dose of adriamycin. This is assuming my blood levels are at a high enough level but with how well I have been feeling lately I am almost positive the blood will be good enough. Not my favorite way to spend a Monday afternoon but this round of chemo is something that couldn't start soon enough for me as weird as that sounds.

Anyway, I am keeping my fingers crossed that this round goes as well as the last one. The theory right now is to get the chemo treatment once every other week as long as my body can handle it. Who knows, if I keep handling it this well we might be able to up the dosage to a round every week. This is not something I necessarily look forward to, but my body is in some serious need of change. Prior to the start of this treatment, everything was feeling run down and I just had a gut feeling that the cancer was starting to eat me alive so to speak so being on treatment is somewhat of a relief mentally. I feel better knowing we are fighting this disease instead of sitting back and letting it fight me.

The main reason for this post though is just to let you all out there know I very much appreciate your positive thoughts and prayers that are constantly sent my way. I not only need them but I truly feel it helps, whether just helping give me piece of mind or whatever. So keep the positive vibes coming my way.

Oh and just as a sort of fyi, my radiation doc thinks that the adria treatment in combination with the round of hyperthermia we just finished up will work together to help cure my neck ulcer. Usually the chemo would contribute to the break down of the wound because of its tendency to attack healthy cells, but for some reason that I don't know, chemo in combination with hyperthermia is a good thing. So that is something that I can keep in mind to tell myself while sitting there watching poison being inserted into my body.

Thoughts on End of Hyperthermia

So hyperthermia treatment has finally come and gone. There were 16 total treatments that spanned 6 weeks. Every monday, wednesday and friday MaryEllen and I had to make the approximate 25-30 trek across town to the clinic that performed. In one sense it was unlucky that we had to travel so much and often for the treatment, but at the same time, my radiation doctor and his clinic are basically the only place in the region that performs this treatment, so in a sense we were lucky to only have to travel that far. Plus, with the relative lack of side effects, overall I cannot complain. The only thing that has really flared up is that with the hyperthermia appearing to be successful, there has been some re-growth of healthy skin, which in turn has increased blood flow in the area. Well the problem with that is the increased blood flow, along with low platelet counts has contributed to the ulcer being a lot bloodier than normal. Not to be too gross, but last night we basically couldn't get the darn thing to stop bleeding no matter how much neosporin and gauze were packed in there. We have got it stopped bleeding for now, but I fear this is going to be a constant battle over the next few weeks while the ulcer continues to heal.

I don't know if MaryEllen has blogged about this but my eye sight has been very poor lately, to the point where I can't work and do not even trust myself driving that distance across town. We do not know the exact reason for this sudden and extremely annoying/frustrating condition. It may be a result of letting blood levels get too low and having some real damage done or it may just be a result of continued swelling in my brain from the recently completed radiation on my head lesion. Dr. Sorum told us to expect swelling and side effects for up to 6 weeks after radiation. So far I believe it has been 3 weeks. Anyway, because of this eye issue, MaryEllen has been kind enough to take the time out of her morning where she could be making money at work to drive me to my treatments and was even patient enough most of the time to sit in there with me for the hour just to keep me company.

The point of this post is that the end of hyperthermia is sort of bitter sweet for me. It’s not too often in life as you grow older and gain responsibilities and whatnot that you are able to spend enough time with the person you enjoy most in this world. I know I am often grumpy and not in the greatest of spirits whenever medical procedures are involved but getting to spend those couple of hours every other day with MaryEllen made it well worth waking up early to go be uncomfortable. I am going to miss the occasional late morning breakfasts or early afternoon lunches that I was able to coax her into taking me to. So, not that hyperthermia itself was an enjoyable experience, but the results were something that I would not take back.

Sorry for the corny rant, I just wish people knew how ridiculously much MaryEllen has done for me over the past 3 years and I will take any chance I get to be able to thank her and spend a little time with her.

On to the next treatment we go. As mentioned earlier, I have been feeling incredibly well lately and am looking forward to taking on whatever comes next.

Spring fever

We have lots of good news to share this week. Hyperthermia finished up this Friday. We continue with chemo on Monday and follow up in two weeks to review the success of hyperthermia (or consider additional treatments) and take a few more photos for publication. As we expected, the minimal discomfort and low risks were worth trying this treatment and we hope that it, combined with an effective chemo, will heal at least the skin tumor. It is also gratifying to share information about a lesser known treatment to other skin cancer patients who may benefit from it in the future!

Amidst every-other-day appointments the last few weeks, Garrett had some unusually good days. He has been eating well and maintaining his weight which has become one of our biggest challenges over the last 9-12 months. Symptoms from his cancer, treatments and/or medications eliminate appetite, slow digestion, produce mouth sores and heartburn that all add up to moderate steady weight loss. We added other medications including medical marijuana to counteract each of these problems, but none were alone able to curb weight loss. While we are not sure exactly how, recently he managed to find the right combo of meds and diet to at least hold his current weight and feel okay when eating a regular sized meal! This is a major accomplishment and makes daily life much more tolerable. Biggest challenge now is to keep it up and work on gaining back some weight.

One thing or another goes awry even on the best days, but they have been far closer to our ideal. It is good to see the sun again in our area, spring is on its way, and we are looking forward to having fun while Garrett is feeling this good. A few of our good friends are planning weddings this spring and no doubt fun will be had! In the course of chemo we can expect him to feel worse after each treatment cycle, but last night we had dinner out and watched a movie at home to celebrate the end of hyperthermia – so we are taking advantage of the times he feels good.

Monday, monday, it just turns out that way

Marathon Monday started with hyperthermia in the morning, blood drawn at our regular doctor’s office in the afternoon and then heading to the hospital for a platelet transfusion. Garrett was feeling so good today that we figured he might have decent blood counts – the red cells and white cells were good, but the platelet count concerning. Platelets primary function is to clot blood and with extreme low counts you risk bleeding uncontrollably or developing life threatening complications. Although it is not how Garrett wanted to spend the afternoon – when he was feeling so well – we drove down the street to the hospital’s outpatient infusion floor where all our transfusions are done. It took much less time than when red blood cells are needed, only about an hour. We plan on the next dose of chemo a week from today where we will check all his blood counts again and see if another transfusion is needed. Hope this week is another of not feeling too bad, finishing hyperthermia and eating well to put back on a few pounds before another dose of chemo.