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.