Monday, July 25, 2005

July 25th -- Day off

Hello All!
The weekend and last few weekdays was a little tough, so I took a break from the BLOG.
Nasea has been pretty constant and I am thankful that the nasea drugs do work pretty well when I take them as regularly as I should. Smells drive me batty! Cheerios smell like something vile-- indescribable actually. I have a ringing in my ears now-- it comes and goes, but I am noticing that my hearing seems muffled otherwise-- this is very surreal-- the shower does not sound the same as I remember before chemo, and background noise definitely bothers me sometimes.
Watching "Le Tour" on OLN helped me get through the last few days with a positive attitude and keep my spirits high when I was feeling like crap.
Although it may have been said before, it really is inspirational to know that Lance survived a worse form of what I have and lived to win the tour not once, but 7 times! I will be back on my bike in short order and win something of my own . . .
I have a zap of bleomycin scheduled for tomorrow and will meet with Docs tomorrow as well. Hopefully all will go well and there will be no wrinkles in the treatment regime. I am looking forward to finishing this stuff-- having toxic waste injected daily is not my idea of fun, but the worse I feel, I suppose the better it is actually working. Week one is done and now I am actually recovering for nearly two weeks. Rest is great!
One day closer to Cured!

Friday, July 22, 2005

July 22nd -- Chemotherapy Day 5 (By Sarah, Rick's wife)

Today was the worst day so far. Our good friends Amy and Jason and their beautiful daughter Elizabeth stayed with us last night. Rick could not sleep last night, he felt very nauseous, and could not get comfortable. Today Amy and Jason took him to therapy while I took Hannah to school. Our friends are so wonderful. Jason and Brett hung out with Rick while he received treatment today. His treatments from the week have left Rick very nauseous, exhausted and lethargic so today they gave him a heavy duty nausea medicine with a sedative since he wasn't able to get much sleep last night.

After treatment today he came home and slept most of the day coming downstairs periodically. He's having a hard time getting comfortable trying to rest. It's so hard to see the person you love feeling so miserable. He did eat some today though, thankfully.

So I had a reality check today regarding the cancer. A good friend of mine's father lost his long battle with thyroid cancer last night. The reality hit me hard today what cancer can do.

We have been so blessed with the outpouring of support from our friends, family and neighbors. Our good friend Michele organized dinners for us for all of this week and next. It was so nice not having to worry about what dinner was going to be. We actually have a very packed fridge right now. It really has been overwhelming. I'm usually the person offering help to others so it has been difficult accepting it. Our great neighbor and friend, Hope, took Hannah for dinner and playtime the other night. It really couldn't have come at a better time. I really needed to just sit on the couch and not have to think about anything. I was so touched by her gesture. My good friend Laurie called today and told me that her and Ken (her husband) and some of our other friends Susan and Rob have arranged for a maid service. So generous and completely overwhelming! But I must say that is the hardest thing, keeping up with the house while trying to entertain the troops. And then when I do have five minutes the last thing I want to do is fold laundry. So I must send out a HUGE THANK YOU to all our friends for all of their help.

I like to think of myself as a strong person and today I started to crack. I think the stress of running a household, which includes two kids (one toddler, one breastfeeding baby), a dog and a sick husband has gotten to me. Hannah is being a typical two-year old and not listening to me and it always seems to happen when I'm breastfeeding and cannot do much about it which then makes me very mad so I start yelling. I really don't want to be a yeller. This is stressing me out. It doesn't even work but unfortunately it's my reaction. She just laughs at me, which is probably the right thing to do considering I'm yelling like a fool. I need to get a grip on that though, I feel terrible after a bad yelling spell. Well, gotta run, poor little Jack would like some attention.

Tuesday, July 19, 2005

July 19th -- Chemotherapy Day 2

Today was lightning fast! I am starting to feel like a pro with chemo and am still feeling pretty good overall. Yesterday lasted till about 2 PM and today I was outta there at 11:30. Mike and I had a good day today in a number of ways.
Mike found out that his tumor markers are down by 1/2 since he started his treatments. This is great news since it means that his "mets" are responding properly to the treatments. He said that he is feeling a little nausiated today-- I said to him that this means his meds are working-- this is a good sign and great news that his tumor markers are down so much!
We chilled out in our recliners for all of the treatments today and had watched Office Space on my laptop. This raised our spirits a bit and had us laughing out loud in the normally quiet surroundings of the treatment room. I am sure that some of the folks must have thought we were nuts laughing out loud while being pumped full of industrial waste, but the movie did a good job of keeping us in high spirits!
I felt fine throughout the treatments today-- I think it made a difference that I took the anti-nausea meds before I went in this AM. The nurse today was Linda-- she had a good sense of humor and laughed at my silly jokes. It really makes a difference when people respond positively and I appreciated her sense of humor and diligent care today. She has been a nurse for over 13 years and it shows in her attention to detail combined with her good humor in dealing with those of us in need of her care.
Brett picked me up from my treatment today and it was great to have a friend come and see me! I was expecting to hang out at the center for a while with him today, but with my luck and fast treatment today, I was finished with the treatment by the time he arrived. We just went and grabbed a cup of Coffee at Amante in North Boulder and saw our friend Gina with Piper and her mom. I hadn't spoken with Gina in a while, so I just shared my situation with her and sent them on their way. I always wonder how people will react to my situation when I tell them, so hopefully I didn't freak anyone out with my candor . . .
Amazingly, I really do feel good right now, so hopefully this will continue as I progress thrugh the next few weeks.

Here is how good I am feeling today:
I have felt like a normal person, and I have not felt sorry for myself at all. I had a few work conversations with folks at Sun and my office in Boulder. It seemed like a normal day in that sense, except that my stress level is somehow lower -- I think I have figured out how to compartmentalize my emotions a little more effectively and be productive in quick spurts.
I am looking outside, appreciating the beauty of our surroundings and looking forward to training for a 1/2 Ironman as soon as I am done with my treatments. I have shed 10 pounds since my initial diagnosis and am looking forward to getting back in the pool and on the bike, motivated to take on the world! I saw Ken and Laurie over the weekend and was thinking that the 1/2 Ironman in Coeur d'Alene, Idaho might be the way to go in the Fall of 2006.

One day closer to cured!

Monday, July 18, 2005

July 18th -- Chemotherapy Day 1

I have officially started Chemo! I went in this AM and met with the nurse practitioner to discuss the schedule. I then went to the "Chemo room" and hung out with all of my new pals for a round of fluids followed by a super strong diuretic they call Lasix (not to be confused with the eye surgery) I was suppsed to urinate 400cc before they started me on the Cysplatin, so I went over the top and did about 1.2 liters!!
The entire drip fest into my catheter lasted about 4 hours and I felt fine most of the time. I ate like a pig and probably disgusted a lot of the later stage patients around me. Hopefully I did not exacerbate anyone's nausea! Sarah brought cookies to the nurses and I was pretty chipper compared to everyone else in the place. We shall see if this lasts.
I met a great guy Mike, who is in a similar situation to myself and is having four rounds of BEP (in comparison to my two) he has a bit of additional activity in his chest cavity, he seems to be keeping his head up and I think he will do great. I also briefly met "Becka" who seemed to be later in a round of chemo and was really exhausted. She had already lost her hair and seemed pretty exhausted. Bothe Mike and Becka seemed to be pretty close to me in age and I sincerely hope the best for them in their treatments. Mike and I have decided to watch office space on my laptop tomorrow to pass the time and escape . . .
I got home around two in the afternoon and started to feel my first pangs of nausea and fatigue. I took a great nap and woke up energized for dinner at around 7 PM. Energized is relative, I suppose, since it took me about 20 minutes to get out of bed with the initial bad hangover feeling that followed my nap. Dinner was a great meal prepared by or fantastic friends, the Conaghans. Again, I am humbled by the generosity of our friends and appreciate all of the help! Interestingly, the smell seemed good, but I was unable to taste as well as usual-- I still have a mild metallic taste in my mouth from something in the treatments today. I have had a mild headache all afternoon/evening, but am treating this with Tylenol-- all is good.
I did not ride the bike today, but I feel happy that I was able to listen to my body and get the rest that I obviously needed this afternoon.

One day closer to cured!

July 17th

It is Sunday, and I am a little freaked out about starting the Chemo tomorrow. I really have no expectations about how I will actually react to this stuff, but in prep for the lethatrgy that is inevitable, I got in a bike ride with Jim C this morning. we went about 20 or so miles, and I actually felt OK even with the Hickman hanging out of my chest. I have started calling this thing the Frankenstein factor . . .
Either that or the new trend in body piercing!!
My heart rate got into the 170s and there were no problems. Having never had a catheter like this in my chest, I was a little paranoid, but there were definitely no issues. I was really worried about having Jim looking over me on the side of the road as I passed out from shock and then having the trauma of calling 911 for my care . . . Of course, none of this happened, and the ride was fine. It was really nice to be outdoors enjoying the warm weather, smells of nature and the views of the fabulous front range with a good friend. Thanks Jim for the company and the exercise! I have an aggessive goal of getting in a very short ride every day even while doing treatment, so anybody who wants to go on a short spin during the cool part of the day and possibly hold me up when I feel like crap, let me know!

July 15th

I had the Hickman Surgery today. No more masters swim classes for six weeks or more now! It was unbelievably quick and unintrusive. They used a MAC for the Anesthesia. MAC=Managed Anesthesia Care, I believe-- essentially a bunch of good sedatives, local anethetics and other stuff mean that I was not awake, but could easily be roused in an emergency-- this is low risk and works great for minor procedures. This was really nice in that I was awake and cogniscent quickly following the procedure and was up and walking in very short order. Proving that the hospital staff is human, I suppose, the nursing staff forgot to give me a complete care package for the catheter and nobody actually showed me how to clean the incision area or properly take care of the catheter. According to the written directions, it looks pretty simple, but a demonstration is much more valuable in this situation. I am looking forward to getting this demonstration from somebody with the oncologist's office. Dr Richard Fox seemed very competent and did what appears to be a great technical surgery. Hours after local anesthetic wore off, I had very little pain and the catheter is well placed on the left side of my body . . .
Nice job to all!

July 13th

I have been working and avoiding thinking about much off my situation in the last week. I think I am allowed this luxury!
I had a meeting with the oncologist yesterday. This was the real reality check!!
One of the plans of action with the Oncologist was to gain a better understanding of staging with a test called a PET scan.
This is really interesting stuff. PET stands for Positron Emmission Tomography or PET Imaging. Basically, I was going to be scheduled for this test to determine if there were any additional growths in any lymph nodes throughout my body. From a basic standpoint, this test works like a cat-scan, except that the machinery is a little different and priorr to insertion into the donut you are injected with radioactive glucose. Glucose of course is a major fuel source for metabolically active tissues, and will attach itself to things like your heart, lungs and any fast growing tissues int eh body (like tumors also). This cool thing is that tissues like lymph nodes do not usually attract glucose, so any indication of radioactive glucose in these tissues would be an instant indicator of neoplasm (new tissue) in these areas. This seems like a great tool in determining staging of the cancer and determining appropriate treatment . . . . For more on this test see: website
However, my insurance is Anthem Blue cross of Colorado. For whatever reason, they consider this procedure unnecessary/experimental, so it does not look like we will be doing this. I really find this to be a little illogical for the insurance company to not consider this procedure a good investment from a deterministic or financial perspective. First, proper understanding of the staging can determine that a patient (myself!) does not need follow-up chemotherapy or surgery in the case that lymph nodes are determined to be devoid of neoplasm. This could mean a significant financial benefit to the insurance company and patient in the case of good pathology in combination with good PET results. Second, It is really rediculous that I am using financial rationale to explain this since health benefits should not be determined by short term financial goals of insurance companies. This is seemingly unethical behavior by insurance companies since it can result in health issues for patients who are in precarious timing situations with treatment options. Doctors with specific expertise whould not be second-guessed on procedures that may have benefit to patients.--- Especially considering that this is a potential upside for the insurance company!!
OK-- so that is the end of my rant. I am going to go for the Chemo regardless of the test since it is a good safety net for me. I am a little upset at the insurance company, but that is a fact of life in the US with our current health care options. This is one case where I expect a HMO would beat a PPO option for treatment and testing options. FYI: I could possibly do this test on my own (and may do it eventually) but I will be out of pocket approx $5-10K. youch!
At this stage, I am silling to suffer through chem though and the insurance will pay 100% of this, so I am going for it!
Treatment for BEP looks like the following:

Week one: 5 weekdays of 5 hrs (approx)/day including two of the three drugs every day and Bleomycin on Tuesday.
Week Two: Bleomycin on Tuesday
Week Three: Bleomycin on Tuesday
Week Four: 5 weekdays of 5 hrs (approx)/day including two of the three drugs every day and Bleomyacin on Tuesday.
Week Five: Bleomycin on Tuesday
Week Six: Bleomycin on Tuesday

Side effects are pretty whacky-- nausea/vomiting are pretty common-- My blood counts and platelets will also drop pretty significantly sometime in week two and I will likely lose my hair.

In order to ease the stress of the needle pokes throughout the next six weeks, I am going to have a "Double loomen hickman Catheter inserted into my chest for use with all blood draws, treatments, etc. Putting this thing in is a short outpatient procedure and will happen on Friday. Surgery is my biggest dread these days, but I talked to a really nice lady at the surgeon's office who was raving about this catheter for use in her own chemo treatments. I trust her 100% on this since she was having treatments for a long time and had a stem cell transplant recently. I am not sure of her age, but whatever treatments she had, they worked great! she is in remission and looked great.

July 4th

Independence day! We went to the Cherry Creek Arts Fest and had a bit of fun in the heat. Afterwards, we visted with our friends Brittanie and Dan from Northern VA, who were in town for the weekend to visit with her parents. It was fun to see them and meet everyone. I think I had a few moments when I was not thinking about my cancer. Hannah was running around like a nutball harrassing Jonah and complaining that he took stuff from her . . . of course when you are two, everything is yours and things reach crisis level in a heartbeat!
Maybe this is strange, but it sort of warms my heart to see the insignificant conflicts and tribulations of a couple of two year olds and know that the innocent minds are not as conflicted as my own! 10 seconds after screaming about a toy conflict, two year olds can be overcome with joy and happiness.
Little Jack made my heart melt with a full-blown smile.
I am expecting my understanding of joy and happiness will only be enhanced by the new perspective that this cancer experience is giving me!

July 1, 2005

Today was my first meeting with Dr Sitarik. A good guy, he was happy to again present me with options and the results of my pathology and other information. Interestingly, I found out today that there is great information at the disposal of these guys who are experts in the area. So far, it looks like they are very good about handling the apparent nightmare of dealing with the insurance companies. This is a relief since this is the last thing that Sarah and I want to dal with while we are going through this process!
Sarah went with me to the appointment and I will say that it is great being able to share this entire process with my soulmate. we are both pretty stressed out about this since we have two young children, but it makes a big difference being able to share all of our feelings openly with each other and our friends.
With the Doctor, we scheduled a PFT (pulmonary function test) to make sure that my lungs were up to snuff for the chemo drugs. Bleomycin can have some lasting effects on lung tissue and it is important that your lungs are healthy before any BEP schedule.
One thing that amazes me already is that there appears to be a "matter of fact" feeling in this office regarding treatment options -- I suppose that the extrodinary nature of my situation is mild compared to the situations these guys have seen over the years. Everyone is very professional and concerned, but something seems missing from my perspective . . . Of course, I really shouldn't have any expectations, and everyone is really great so I have no complaints.
I guess I just cannot get over how weird this experience is I have a tumor? It is cancer? I had it removed? I have to have Chemo? I still cannot believe any of this!!
I have a young family and a job with responsibilities - this is a very big imposition and I really have no idea what I am going to do. All of these questions and concerns are new to me, so I am a little lost.
I think after the few weeks that have passed since the initial understanding, my thoughts on the whole thing have finally started to sink in and I am getting a little more stressed out about the situation. Friends and family have been great though. Having my parents out during my first surgery (really a coincidence, but great!) was a godsend.
Since we have told our frindes, I have been humbled by the generosity and compassion. Simply being able to talk with our friends and share the experience has made a huge difference and I have never appreciated the value of frindship as much as today. Thanks everyone for all of the support!

June 23rd

I Met with the Urologist again today and got all of the news on my ct scans and pathology. My tumor was malignant, which is no surprise. Dr Melouk told me earleir in the process that from what he has seen, tumors like mine are cancerous in about 90% of the cases. My non-seminoma cancer has a few indicators that increase my risk factors: 100% malignancy of the tumor area, partial invasion of vascular region in the area and epididmal invasion. This means that I have about a 60% risk for recurrence of some sort if left untreated. In addition to these indicators, I do have one slightly enlarged lymph node on the left side of my lower abdomen. Since the lymph node is only slightly enlarged, we are not sure what this might mean.
going forward, my options are pretty cut and dry for this sort of cancer. I could opt for RPLND. Holey smokes-- this is an invasive procedure! RPLND stands for "retroperitoneal lymph node dissection" and is a major surgery to determine if the cancer has actually spread or if further treatment is needed. See this website for more information. It is a little graphic in a scientific sort of way, so if you don't like that sort of thing, don't look!
The other option is a Chemotherapy treatment called BEP. This is a three treatment coctail that includes the following: Etoposide, Cisplatin and Bleomycin.
Each are toxic to DNA/RNA in different ways-- I have a lot of learning to do about this and will post more information as I learn . . . In the meantime, here are some basics:
http://www.livestrong.org
http://www.plwc.org/testicular
I am currently leaning toward The BEP Regime, since I do not like the idea of a major invasive surgery that also may be followed by a full chemotherapy treatment. The cure rates for proceeding with Chemo only appear to be great. The side effects are not fun, but I am not faced with two potential 6 week recovery periods (surgery plus potential chemo . . .)
If I choose chemotherapy now, it looks like it will be a two cycle treatment with about 6 weeks from start to finish. Looks like I will have the first meeting with the oncologist to discuss this more in the next few days. There is also a small possibility that we may just observer my status and not do anything (although this is not really realistic).
Wish me luck!

Sunday, July 17, 2005

June 22nd

I had a Cat-scan today with some exciting contrasting fluid. If you ever have one of these, it is strange!
The stuff for your digestive tract is a barium sulfate solution that is supposed to taste like either banana or apple, but is really bland and disgusting. The IV they give you just prior to insertion into the donut is the strangest of all. Then CT scan techs told me that it would feel like I have peed in my pants, but I didn't know how realistic this interpretation would be until I actualy felt the warm fluid coursing through my veins. It not only felt like I had peed in my shorts-- It was almost as if I had gone and then been dipped into warm goo-- this is my closest approximation to the sensation . . .
It was so strange that I had to hold myself back from this involuntary giggle that came over me.
Anyway, all is well, and there are still no pathology results.

June 21st

I went to a work meeting this morning and I don't think that the person we met with had any idea that I had just had surgery. I am faking my comfort level a little, but I am recovering surprising ly well. This evening, I pulled the steri strips off of my incision and saw that things were healing quite well. taking the steri strip soff of the skin made the incision much more comfortable and I definitely feel like I will be recovering quickly.

June 20th

I took today off of work and I am feeling a bit better. I am quite sore, but I am almost able to stand up and walk like a normal human. No pathology results yet . . .

June 19th

The numbness in my right thigh is a bit better today, and I think the rest is really doing me a lot of good. I am hobbling around a bit today and really want to get out of the house.

June 18th

I have a bit more pain today, and the numbness in my right thigh is spreading-- I am hoping that this is just a passing phase with the aftermath of the surgery. Doing anything that involves my abdominals is a little painful. I have taken a few of the narcotics perscribed to me in order to sleep a little, but otherwise, I am actually doing pretty well. I still cannot believe how quickly this has happened . . .
Sarah has been very supportive during this process and although it is still hard for us to talk about our worry, I am truly thankful that I have someone to share this with.

June 17th

I had Surgery today-- a radical Orchiectomy! New vocabulary for the newly indoctrinated into the one nut club!. It appears that my tumor is most likely malignant, but it also appears that we cought the tumor early enough that my treatment options will likely lead to successful elimination of any chance of additional spread. My urologist has stated that the operation went well and that it appears that they were able to get all of the neoplasm. No news on whether there is any sort of vascular or epididmal invasion. We will probably get some pathology on tuesday or so of next week. I suppose, if there is any good news to get from this then it is that this form of cancer is relatively treatable and the cure rates are higher than 90% at the apparent stage.
I had a bit of pain after leaving the hospital, but not where you might expect. The incision is in a lower abdominal location above where I had an incision for an appendectomy when I was in my teens. The procedure removed the tumor through the inguinal area and there is no apparent disturbance to the scrotum or other area of my delicate anatomy. When I look in the mirror, I notice a slight difference in appearance, but I would venture to guess that nobody would suspect that I have only one nut unless they were acutely aware of my situation.
After being at home for several hours after the surgery, I have noticed that there is some nerve damage in the direct path of the surgery and a strange numbness on the outside of my right thigh. All I can say about this is that Surgery is weird!
I cannot believe that this was an outpatient procedure!

June 15th 2005

This day is the fateful beginning of my new journey. I found out today that I have testicular cancer-- My first surgery is scheduled for Friday the 17th and I am in complete disbelief that this is me I am talking about.