A Reflection on the Year That Was – 2012

There is no doubt in my mind that 2012 was not exactly the year that I expected it to be. I know that very rarely do our lives ever go as planned, but I certainly wasn’t planning to be fighting cancer before the 5th month of the year was over. As I look back at that trip to Nashville I remember that I was looking forward to it very much. I was going to be spending time with some great people and learning about a great medical system. Even though that trip went downhill fast I still came away from that experience with some friendships that will forever be cherished.

2012 taught me quite a few things. Some things that I learned were new. Others things were already known but were either clarified or refocused. Here are some of the things that I learned:

• I have a wonderfully supportive and loving family.
• Life comes at you in unexpected ways.
• Cancer sucks.
• Positivity is a powerful thing.
• You never know when you might find yourself in a position to teach something to someone.
• Cancer is not unbeatable.
• Chemotherapy is unpleasant…at best.
• I have some unbelievably thoughtful co-workers.
• Don’t sweat the small stuff.
• The power of prayer is very strong.
• I am surrounded by so many friends it is almost unfathomable.
• I am strong and resilient, but perhaps not as much as I thought.
• We are not always in control of our health.
• Some friends step up in your time of need…and it isn’t always who you expect.
• My employers are very supportive.
• Seemingly little deeds can make a seemingly big difference.
• Your best friends smile upon you when you aren’t looking.
• The Carbone Cancer Center at the University of Wisconsin rocks.
• Dr. Brad Kahl is an excellent physician and has a great staff.
• You have to win many battles to win the war.
• I must have left a positive impression on a lot of people in my life.
• Southern hospitals DO take good care of a Yankee! Thank you St. Thomas Hospital.
• Some things are not as important as I once thought they were.
• Cherish the time you have and celebrate life.
• Visit more with people you love, people you look up to, and people who shaped you.
• I hate being on medication.
• Abdominal surgery is difficult to rebound from.
• It is OK to be scared.
• Pets make everything better.
• Scars remind us of where we have been, but they don’t have to dictate where we go.

Selfishly I hope that 2013 is a better year for me. I also hope that 2013 is a year that every one of you will look back upon and say that it was a good year for you. Happy New Year everyone!

My Christmas Came Early

It goes without saying that my Christmas gift arrived on 11/26/2012 when I found out that my cancer was in remission. As Christmas approaches I wanted to take the opportunity to thank each and every person who helped me through a battle that had many ups and downs. Whether you called, wrote, sent a card, participated in one of the many tributes that took place, donated to the Krickincancer Krew fundraiser for the Relay for Life, sent a prayer, or any of the other many thoughtful things that took place, please know that you were all a vital part of my recovery. I drew strength and motivation from your incredible support, and without it I’m not sure how things would have gone.

Things have been going pretty well over the past month. My energy has been very good for the most part. I have joined a fitness club and have been going every day to lift weights and do some cardio. I can definitely see my strength improving greatly. My cardio fitness is coming along slower, although this morning I was able to do 90 minutes on the treadmill with a lot of varying inclines. I have a long way to go to get back anywhere near where I was, but I am on my way. Now I just need to learn some patience….

From a health standpoint things seem to be going well. I am still retaining water and have been on Lasix since my PET scan. However, in the past couple of days it seems that maybe things are moving a bit. Hopefully that will continue and I will be able to stop the diuretic. I am still taking a blood thinner (warfarin) for the blood clot that I had in my arm. That seems to be regulated pretty well and my blood tests are up to two weeks apart now. The neuropathy in my hands is much better, but the feet aren’t coming along as quickly. I was a little scared a couple weeks ago when I discovered a couple of lumps in my abdomen. After conferring with the doctor it was decided that they likely are sterile abscesses from the Lovenox injections I had to give myself when I developed my blood clot. All in all my health really hasn’t been an issue at all.

I hope that each and every one of you has a blessed Christmas and that you find peace and love in your lives during the holidays. Again, thank you from the bottom of my heart for being the most supportive cast of friends and family that a person could never wish for, much less actually have! You all are the best and I send you my love. Merry Christmas!

Cancer Free!

This afternoon I received the news that I had been hoping for. My PET scan showed that I am cancer free! It was a difficult journey for sure, but is already becoming nothing more than a bad memory that I hope to soon forget about. I can’t really describe how relieved I am at this point, but I’m sure that you can probably imagine. I think I was sort of shell-shocked in the doctor’s office, as I felt emotionless after he told me. However, I can assure you that I was not without emotion.

At this point the primary focus shifts to putting my body back together and fixing all the little ailments. Today we doubled my diuretic dose to try to get rid of the extra fluid that my body doesn’t seem to want to part with. I also am trying to get my blood thinned to a safe level since I developed another blood clot in my right arm. It isn’t thinning as fast as is preferred at this point, but it was decided to hold the course for a bit longer and see what happens. I’m already taking 15 mg of Coumadin and the doctor hasn’t had a patient take 20 mg for quite some time. Hopefully things will straighten out pretty quickly and we will get things dialed in.

I’m back in the gym and starting to try to get back in some semblance of shape. I have about 50 pounds of extra weight that I gained while getting treatment (an unknown amount which is water). I have started walking/running and lifting weights. My diet is a work in progress as I try to get back to the vegetarian lifestyle that I had started prior to getting diagnosed with cancer. My strength is improving every day and that is what is most important.

For now this is about all I have to report. I will periodically post an update as things progress for me. My next CT scan is scheduled for late in February. Until then it will be full steam ahead! Thank you once again to EVERY SINGLE PERSON who kept me in their prayers, sent me messages or cards, called, stopped to visit, or simply thought of me as I worked to kick cancer’s ass! I couldn’t have done it without you.

It’s Always Something…

Over the course of the past 2 or 3 days I have been noticing that my right hand, wrist, and forearm were becoming slightly bigger than their lefty counterparts. In addition, yeserday my right shoulder started to ache, similar to some of the feeling when I had my first blood clot after my PICC line insertion. I had stopped taking my warfarin a week ago Monday after I had the PICC line out for close to a month. This evening I get to once again start twice-a-day heparin injections and warfarin, which I will likely continue for four to six months. If the arm improves it was likely a new blood clot, which isn’t uncommon after having had one. If it does not improve then I will likely have to have an MR Venogram to take a look at the vessels and determine whether I possibly have post-thrombotic (postphlebitic) syndrome, which is another complication that can arise from blood clots. So, there you have it. I will let you know how things go. Have a great day!

All Clear!

I debated waiting a bit until posting this because a more certain result can be had in about a month….however, I can’t wait that long! On Monday I had my CT scan and my hematologist said that there wasn’t anything on the scan to indicate anything other than the fact that I am in remission! In fact he wasn’t going to order a PET scan for me at first, but after some discussion he decided to, and that scan will be on November 26th. The PET will be more definitive than the CT; however, he once again doesn’t feel that there is anything to be concerned about. The other encouraging thing was that my LD (Lactate Dehydrogenase) blood marker was within normal range for the first time since we started to track it. I was very worried during my treatments (which I did not share publicly) because my LD rose every single time it was measured. LD can be an indicator of disease progression, but can also be influenced by other things which can make it unreliable. A normal LD range is 90-245. During my treatments it rose from an initial reading of 193 at the start of my treatment to 312, 480, 417, 473, 530, and finishing at 240 which is back within normal limits.

My side effects for the most part are residual at this point. I still have the numbness, tingling, and burning in my fingers and toes. Other than that (and a shiny smooth head) I am only battling fatigue and water retention. The doctor said that the fatigue is primarily caused by the chemotherapy and not my lowered hemoglobin. He described the fatigue as one that cannot be powered through. When you hit the wall, you hit the wall. I would have to agree with him on that one. At the end of the day I am pretty well all in right now, though I can feel myself getting stronger every day. I had my weight change about twenty pounds in the course of 4 days recently which was definitely water weight. I have a lot of edema in my legs and arms especially. I will be on a diuretic until my PET scan or until I feel like I am where I need to be from a standpoint of my baseline. I do like that the doctor gives me the leeway to help make those judgments.

My hemoglobin on Monday was at 10.6 which is still low, but getting better. My white blood cell count was at 4.0 which is within a normal limit. My percentage of neutrophils was good, but my lymphocyte percentage was still a little low. It was encouraging to see that the lymphocyte percentage is recovering though since that is where my cancer was located. My kidney and liver function looked good, my electrolytes were normal, and everything else looked very good. My last echocardiogram showed good heart function with no chamber enlargement or valve damage. So overall I can’t complain at all about where I sit today.

I have been back to work for the past 3 weeks and am trying to play catch up. Being gone so much, especially over the 6 week period at the end of treatments where I really couldn’t work much really put me in a hole. Thank God I have a wonderful administrative assistant who knows my job as well as I do. Having a group of colleagues that covered for me, assisted me with a couple of major projects, and provided much needed encouragement along the way made being away a lot easier than it could have been. So now I will continue to work, strive to get stronger, and hopefully get back to working out soon. The doctor said that when I go back for my 3 month CT I should feel like 75% of my old self, and close to 100% at my 6 month CT. Anyone who knows me already knows that I want those numbers to be proven bogus! We shall see what happens.

Once again I want to thank everyone for their love and support over this forgettable stretch of months in my life. Without your constant presence in my life it would have been much more difficult to power through and remain positive. You learn a lot about yourself during a time like this…but you also learn a lot about your family and friends. I learned that I am one blessed person! Until my PET scan results are in…take care!

Turning the Corner…

I finally feel like I have good news to report! Over the past couple of days my side effects have improved quite a bit. My mouth pain on Sunday was still very bothersome and talking was still nearly impossible. However, by Monday  morning it had improved and I could at least talk and not cry at the same time. My energy is still very sapped and I tire easily with any physical exertion, but….

I have worked two full days in a row now! That is the first time I have done that in quite some time. Today I’m planning for number three in a row. So, from that standpoint I am very happy happy happy!

My biggest side effect issue the past couple of days has been my feet. The neuropathy is very painful and every one of my toes just burns like crazy when I walk. The skin definitely changed on my feet too, so now I quickly develop blisters on my toes which scream when coupled with the neuropathy. I’m not sure which way things are headed with my feet, uphill or downhill, but I sure hope they come around soon. I should be able to resume biking on my trainer regardless of my feet; however, it would be nice to start walking again soon.

My white blood cell count recovered quite nicely over the weekend. On Friday my overall white count was 0.6, but by Monday I had recovered to 18.8. My hemoglobin is still hovering in the 9′s which is the cause of my fatigue. At this point it looks like I will be able to get by without another blood transfusion. Unfortunately the body doesn’t make new red blood cells at a great rate, so recovery on that front will take some patience on my part. I will be starting to exercise slowly, mostly on my bike trainer, so hopefully that will help to boost things too in the red blood cell department.

As I had mentioned in an earlier post, the waiting game is now the hardest part of this whole thing. I have found that my ability to withstand pain is much greater than my ability to re-direct my thoughts going on in my head. While I am positive about my outcome it is still impossible to not allow some “what-if” thoughts to enter into the equation. I am doing my best to channel those thoughts into something positive, but it sure would be nice if PET scan day were to arrive soon!

Well, I suppose I should start getting ready for work. Again, I can’t tell you enough how much each and every one of you mean to me. Your continued support isn’t slowing down, and I ask that it please not! This isn’t over yet and I need all the thoughts and prayers that I can get. May each and every one of you have a great day and enjoy what looks like will be a beautiful weekend (at least here in Wisconsin).

Roughest Sledding Yet…

This week has been a pretty rough reminder that I’m still a cancer patient. I have never imagined, much less experienced pain like I have right this minute. I am primarily suffering due to multiple large sores on my tongue, the inside of my mouth, and my throat. I am pretty much left speechless because talking brings me to instant tears. My throat is very sore and swallowing also brings tears to my eyes. I have a film inside my mouth that makes we want to spit, but trying to loosen that film and get rid of it is very, very painful. I have tried my Magic Mouthwash that was prescribed, but frankly it does nothing positive for me. I have tried Vicodin and gotten a small amount of relief from that, but again probably not enough to make it worthwhile.

This entire week I have been extremely weak and become short of breath and dizzy with the slightest of exertion. It is very similar to the symptoms I had at this time during round 5 when I received a blood transfusion. This time my hemoglobin was even higher than last, which probably means the blood transfusion was unnecessary last time. I just have to continue to fight through this weakness and its associated symptoms until they improve…but at least that part doesn’t cause pain!

My finger and toe neuropathy is in full swing. My fingers are burning pretty good, not unlike the past rounds. My toes took much longer to be affected but they are now in full swing too. I have four toenails that have turned completely black and are just barely hamging on. It looks exactly like when I lose toenails after excessive pounding of the feet while running. Most of my other symptoms are manageable or non-existent anymore.

I’m looking forward to watching the Ironman World Championship today online. There are a few people I am following with interest, especially Mike Jovanovich from Neenah, WI. He is racing for the first time in Kona and we can’t wait to see him cross the finish line. So, while they are out pounding the pavement I will be planted firmly on my couch, perfectly content to watch for now. I hope everyone finds a way to stay warm and dry today! Good bye for now.