Tuesday, March 31, 2009

There And Back Again

Late yesterday afternoon, I had symptoms indicative of more embolism problems: light-headedness, fatigue, tingling in my extremities and shortness of breath, plus an ache under my right arm between my bicep and tricep (I'm actually not sure if the last one is an embolism symptom). After a couple phone calls to the Hematology Department at Guthrie in Sayre, Daniela, Beau & I were on our way to the Emergency Room.

We got there at 7 PM. After CTs of my head and chest both came up negative for additional blood clots and/or masses, they admitted me. At 5 AM. Gotta love emergency rooms. Fortunately, Daniela & I agreed at midnight that it was time for Beau and her to go home. We were pretty positive I wan't going anywhere and I promised to give her a call with any updates.

Since I experienced the said symptoms and both tests showed no changes in the size of the embolism, I was admitted for observation in hopes that a determination might be made. Yet four days is not really a significant amount time to see shrinkage in embolisms.

At 12 o'clock this afternoon, I received an MRI. The intention of the MRI was to determine if the supposed embolism was in fact a tumor. Were the MRI to reveal blood vessels in the mass thought to be the embolism, it would be proof of a tumor in the pulmonary artery. Fortunately, no blood vessels were revealed. Yet because the mass is so small, a tumor can not yet be ruled out. And because the mass has not shrunk, an embolism can no longer be confirmed.

Even better: Daniela and I waited from noon, when I had the MRI, until sometime after 5 PM this evening before I was told no determination could be made. For the first four hours, my stomach was a wreck - as I waited and I wondered if the cancer had metastasized. Daniela wasn't exactly having "a day in the park."

With no proof of an embolism and no guarantee the mass is not a tumor, I must wait until April 13th - when I have another CT scheduled - so my doctor can hopefully make a clear determination.

And that is all we can do because the nameless material can not be biopsied. There is no way to get to it with a catheter because the pulmonary artery is located between the heart and the lungs. And a PET Scan would serve no purpose because the mass is still too small for the PET Scan to pick it up. Quite a lousy situation to be in, but for some reason, my gut tells me it is only an embolism. Only an embolism. Now that's some perspective! Well...hopefully on the 13th we'll have some answers. In the mean time, the anxiety is over because there is nothing else I can do...but wait.

Saturday, March 28, 2009


I was discharged from the hospital early this afternoon and it's definitely nice to be home. I am experiencing significantly less pain when I inhale and not as short of breath as I was. So, my doctor discharged me with a prescription for Lovenox which I am to inject abdominally twice a day every twelve hours until I am directed otherwise. It will likely be for a month or so then followed by Coumadin for another five months or so. When I am CT scanned for cancer/masses in the middle of April, it will also include a chest scan to check the status of the embolism.

My doctor did not agree with the explanation one of the chemo nurses gave me - that chemotherapy causes the lining of the veins and artery to shed. But he did say that chemo can be a cause of blood clots/embolisms. So, I'm not 100% clear on the origin. However, my doctor informed me that he will be studying my scans, blood work, etc. in order to determine if I have a genetic predisposition for embolisms or if it was a result of my treatment. Fingers crossed - hoping for the latter.

Today is a beautiful day - over 60 degrees with sunshine - and I am definitely putting this computer down and going outside to relax and think about how I have no chemotherapy scheduled. PERIOD. What a wonderful feeling.

Friday, March 27, 2009

Off to Play

Thank you for your comments, emails and even Facebook posts. It means a lot to me.

My doctor asked me to stay for a second night because he wants to see the embolism decrease in size before he discharges me. So, Daniela and Beau came to visit today. He told her he wanted to play on Papa's bed (which he did here last night). So, I changed out of my silly hospital pajamas, put on my blue jeans, shirt & sneakers and we were off to play in the hospital with Beau. The doctor told me that increased circulation with walking would help the embolism dissolve. We had a great time. Beau LOVES the elevators, as well as laying on my bed under the sheets and declaring he's sleeping. He's the best.

I also stopped into the Hematology Department to say "Hi" to the satff. I was admitted through their department on Friday, so I thought I'd pay them a visit and let the staff know I am doing well. It was during my discussion with some of the staff that I was informed of how common Pulmonary Embolisms (PE) are with chemotherapy patients. Apparently chemotherapy can cause PEs because the chemo irritates the lining of the veins and arteries to the point that they actually shed and thus create clots, not to mention all the other drugs I have been on and off of since treatment began - they all effect the blood. I was a bit relieved after hearing this because I thought the PE was a new problem independent of the cancer. And I guess it could be. But it's a relief to know it may simply be one of chemo's more dangerous side-effects and not a new life-long problem.

Daniela also did some research and found that one of the side-effects of PEs is anxiety. No WONDER I felt the way I did in the past week or so. I couldn't figure out what was going on because it was so out of the norm for me to feel so anxious. Now I know.

Hopefully the lounge will be empty so I can watch some Syracuse Basketball on a decent size TV.

Thursday, March 26, 2009

Back to the Hospital

I was very disappointed when I received my CT scan results this afternoon. I have a Pulmonary Embolism. Yeah. A blood clot in my right lung. Not the answer I was hoping for. Once I arrived at the hospital here in Sayre and they actually examined me (after watching me stroll onto the 5th floor), my doctors told me I could have been treated and sent home, yet they admitted me. Seems they already had the ball rolling so they kept me here. I can't say I'm not relieved to be on a heart monitor right now. I feel very safe, considering how shook up I was when I received the phone call this afternoon.

Blood thinners were administered, my heart is being monitored and I will receive tests tomorrow to determine the source. And hopefully it's not additional blood clots.

Port-a-Caths are often the cause of blood clots and with that in mind, I intend to have my Port-o-Cath removed before I am discharged tomorrow. It's possible the clot was not caused by the port and considering they are known causes, I see no reason for the unnecessary risk. I want it out.

The long term plan is to have me on blood thinners for quite a while. Oh, good times! In the mean time, I've got cable and I'm watching Duke vs. Villa Nova. March Madness is so much fun. Go Syracuse!!!

Wednesday, March 25, 2009

A New Stage of the Unknown

For the past few months, I have experienced shortness of breath as a result of the chemotherapy. It is definitely at its worst right now. I can't even take a brisk walk without getting short of breath. A few days ago, I began to feel pain on the right side of my throat (or neck). I saw the Nurse Practitioner at my Primary Care Physician's office and she ruled out cold, sore throat, etc. So today I saw my N.P. in the Oncology Dept. at Guthrie in Sayre, PA to determine the source of the breathing issues and the pain in my throat.

I received a chest x-ray to determine if I am having lung difficulties, a sonogram to determine if my port caused a clot in my arteries and an ECHO cardiogram to determine if I have a heart problem. All tests came up negative. So, in the next day or two, I will receive a CT scan of my chest and neck in hopes of finding the source. It's also possible the problem is a result of acid indigestion, which I experience from the chemotherapy and has been found to be related to what feels like shortness of breath during cardiovascular exercise. However, it would not explain the pain in my throat.

S-o-o-o-o-o-o-o-o-o-o-o-o-o-o, hopefully the CT scan will reveal something. And as a sidebar, I should clarify that it will not include the abdominal CT just yet because of the risk of the false positive. My abdominal CT and PET scans are still scheduled for the middle of April.

Speaking of which, as I walked into the clinic this morning, I realized how anxious I am about my upcoming scans. I would be shocked if they were anything but negative, yet I have no way to know and obviously won't won't know until they are completed and analyzed. And considering my most recent thoughts plus the post-treatment anxiety I am currently experiencing, I am on a bit of an emotional roller coaster - something I have not experienced since the earlier days of my diagnosis.

Post-treatment anxiety is very common among those of us under long-term treatments. It can be from a variety of things. For me what seems to be the source is the drastic change soon to come should my scans come up negative. It sounds odd, but I have been very clear about my role for the last 22-months. I have been doing what ever I need to restore my health and many aspects of my treatment have been extremely intense. Should my scans reveal I am cancer-free, I will need to allow another four weeks from that point to recover from the chemo and then...what...back to normal? That may be the next step but I have to confess, it feels SO far from my reality right now.

Obviously, taking the first steps is what there is to do. And at the same time, the post-treatment anxiety doesn't make it easy. I'll continue to stand back and observe my experience objectively so I can make choices that create the next steps in my life as opposed to making decisions in reaction to what has happened thus far, but the anxiety can get a little intense now and again. I know it comes and goes. It always goes. But I am now in a new stage of the unknown and therefore uncertain how long it will take. Yet I am confident the length of time is really irrelevant and that my sense of security will emerge it what ever way it emerges. Again, it is what I learned so early in this experience - to let go of how I think life should be and simply experience it as it is. Obviously I'll let you know how it goes.

Saturday, March 21, 2009

The Honeymoon is Over

One thing that has been consistent for almost the entire (soon to be) two years, is a thought that often brings tears to my eyes. And that is having to accept that what is happening to me - not necessarily cancer, but a health crisis with possibility of either death or serious life altering circumstances - is going to happen to either me or someone close to me.

Before this diagnosis, it was "other people" who dealt with such things. And it's now that I realize, in the context in which I am speaking, there are no "other people." I am - we are - those people. I have a deeper appreciation for life than I had before I was a diagnosed with cancer and equally a deeper appreciation for life than I had before I became a father. And I also know I am very blessed to have the strength I have had throughout this process. Blessed in the sense that it is not my strength, but a strength I have been graced with. I am not proud of it. I am grateful for it.

And where the pain arises is when I find myself in thought about who in my life will be next and if it will be someone close and dear to me. A powerful gift inside of my experience has been a familiarity with how to stay strong and positive in the face of circumstances that have at times been nothing short of terrifying. Tears ran down my cheeks this evening as I thought to myself, "I don't want anymore strength training. Not with my own health. Not with the health of those I love." And I don't have a choice. The honeymoon is over. The relationship is still sweet, but reality has set in. There is more to come one way or another. I can choose what's so and be with it or pretend life is something it is not. And what has gotten me this far is by choosing what's so. And naturally that is what I will do, but I'm not there yet. At least not today.

Tuesday, March 17, 2009

The Science of Treating Cancer (updated 3/17)

Last night was my 12th Neulasta shot. The 12th of 12 scheduled shots following the chemo. I feel like someone beat the daylights out of me, but that's a good sign. It means the Neulasta is doing it's job. Neulasta stimulates the body's production of white blood cells and the largest bones produce the most white blood cells . Therefore they hurt the most. It's kind of odd that my eyes, forehead and nose hurt as well...???...but it's standard on my list of experiences with this treatment. I'm definitely going to go hit the couch in a few minutes. And I'm SO glad this is the last of the scheduled treatments. We've got a long way to go when it comes to the science of treating cancer. Link

Friday, March 13, 2009

12 of 12

In just a little while, I will have the chemo pump removed from my port. I thought I would be pretty moved once the treatment was complete. The reality is that I am not. I am indeed experiencing some relief knowing that this is the last of 12 chemotherapy treatments. Hell, I'm in heaven right now! However, it seems what will truly move me will be when my upcoming PET & CT scans are negative for cancer.

My PET & CT scans are currently scheduled for April 1st. However, I did some research and found that chemotherapy treatment for colo-rectal cancer causes inflammation of the large intestine and the inflammation can cause the scans to show a false positive for cancer. So, I intend to speak with my new chemo doctor and request the scans be scheduled one month from today. Assuming my I am currently negative for cancer, a scare like that would be more than I can to deal with right now.

On a good note, I found out yesterday that my cancer "markers" are at zero. It's my understanding that a healthy person can have cancer markers anywhere from zero to five and have no worries about cancer growing out of control in their bodies. My cancer markers have been under five since the day I was diagnosed. Some people with cancer just don't have markers in their blood and for whatever reason, I am one of those people. However, the fact that they're at zero at the moment - even lower than they were just months ago - is certainly a good sign.

Last but certainly not least, Daniela and I just celebrated our six-year wedding anniversary yesterday, so it's kind of sweet to have the scheduled chemo wrap up today. A couple celebrations happening at once.

Wednesday, March 11, 2009

Wish I knew about this months ago!

I am home from today's chemotherapy treatment. My new doctor recommended a longer treatment today ( a double dose) and no treatment tomorrow. I came home with the chemo pump this afternoon and will return Friday to have it removed.

I hope it makes things easier. I still have to go to Sayre to meet with my surgeon, Dr. Cagir, so it won't reduce travel time, but it will be nice to not do chemo 2 days in a row. Wish I knew about this months ago!

Feeling pretty lousy. I'm glad there's lots of Big East Basketball on today.

Sunday, March 8, 2009

Great Week

I've had a great week since last Tuesday. Usually I feel pretty lousy right up to the second weekend following treatment, which gives me four or five good days before my next treatment. Fortunately, this time round I have felt relatively well since the Tuesday that followed my (Wed/Thurs/Fri) treatment.

So, on Tuesday March 3rd, I joined a friend (in the picture to the left) at the final home game of the season for the Syracuse University Men's Basketball team. Syracuse won and we had a absolute blast. I felt a little out of it in comparison to how I've felt that close to a treatment in weeks past, but not enough to hinder my excitement.

I went for a couple walks pushing Beau in his stroller this week and I imagine those really helped as well. Exercise is good during chemo - so I've been told - but I'm short of breath just from walking fast as a result of my treatment, so going for walks has been pretty low on my list of things to do.

I'll do my best to take a few more between now and my treatment this Wd/Thurs/Fri, as well as following the treatment. But either way, this upcoming treatment is scheduled to be my last. #12. This could be the last of it for good. I can barely get my head around it.