Five years down

The statistics say that 22% of those diagnosed with stage 3A melanoma won't survive five years. Thank you Lord, because I am thumbing my nose at those statistics; it was five years ago today that the dermatologist removed the mole from my left shoulder that led to eight months of delightful intervention by the medical community. I hope to never see another oncologist the rest of my life!!!

Twenty four months and counting

It has been 2 years today since I received my last dose of chemotherapy, good riddance. In many ways it seems so much farther removed than that. Dr. Chesney said that most recurrences of melanoma happen in the first two years; so on with life, cancer free!!!

Sun.Life

I tried a pair on the new Land's End Sun.Life pants today and they are excellent. UPF of 30, very comfortable feel, elastic waist: just excellent pants. They will certainly be enjoyed on the boat this summer.

Reflections

I have been trying for the past week to come up with a way of bringing closure to this blog . I am seven days removed from my last treatment and looking very forward to a new year free of cancer. These changes are all happening as we enter the holidays, which is always the toughest time of year for me. My younger sister passed away on New Year's Eve fifteen years ago and Christmas without Christopher has a hollowness that I can't express. This year I am hopeful that another sentiment will replace the dread that has recently dominated my life in the Christmas season; that sentiment is gratitude. I am so very grateful for all of my wonderful friends that have surrounded me during this battle.
They say that one sure way to judge a man is by the company that he keeps and when I look at that collection of a couple of dozen good friends who joined me for a few drinks last Sunday to celebrate the end of chemotherapy, I am humbled to be be considered their friend. Some of my friends went the extra step to share the moment with me: Rita gave up a day of work to be my designated driver, Steve left Gloria alone to deal with the youth group and the progressive dinner at his house and Mark and Matt left Matt's 21st birthday party to join me. That is just a few stories and I am sure that there are many more. I don't know how I can possibly express the gratitude for the kindness shown to me by this group of incredible people. If my association with these people is how I am to be judged in this life, I am humbled and honored by the company that I keep. Thank you my friends, I couldn't have fought the fight without you.

It is finally over

After six months of allowing the medical community to inject poison into my body in an attempt to kill cancer cells that they didn't know existed, I am done! It is hard to be too celebratory at the moment, I feel like I have been run over by a Mack truck. Thank you all for your support and friendship through this exercise, it meant a lot to me. A special thank you goes to Rita; she was always there when I needed her and went well above and beyond the call of duty. This has been a ride, I am glad that it is done.
I am wiped out and going back to bed, more later.

The last treatment is tomorrow

Things have finally settled down after mid-afternoon on Tuesday and the last two days haven't been bad. I have been mostly sleeping and haven't had any appetite, but I haven't felt too bad, considering that I am going through chemo. I only had the one bout of vomiting and haven't had any headaches yet, so both of those are positive. I will be glad to be done with this!

Today was tough

The first day of the last round was dramatically harder than any previous day. It was just one thing after another.
I was so anxious driving in to Brown Cancer Center that I was nearly out of control, it was very uncomfortable.
Then my blood pressure was sky high (180/110) when I got there and my blood pressure never runs high. This is one of those 'chicken or the egg' things: did the high blood pressure drive my anxiety or vice versa.
They always warn you during chemo to tell them if the dacarbazine in the IV injection burns you and they call slow it down, the pH is quite acidic. That has never been an issue until this time when the IV burned (badly) for the whole hour of the infusion. All I wanted to do was get out of there, I didn't want any part of waiting longer so I endured the pain.
As luck would have it, I got dizzy again after chemo and had to wait an extra half hour before I felt well enough to drive home.
Moments after getting home I realized that they hadn't given me the new nausea medicine, which I was supposed to take an hour before chemo. After a flurry of phone calls, I head back downtown to me my Emend. The trip back home was real shaky, I want to carefully scout out the side of the road for a safe place to stop and puke.
Once I got home and with the nausea medicine in my system for less than an hour, I got to go slow dancing with the toilet again. There went to new nausea medicine down the drain without enough time to get into my system.
After I got sick, everything settled down and I felt human again, perhaps that will last.

The end nears

The last round of chemo commences in 36 hours and I am strangely conflicted about it. On one hand is the reality that shortly after noon on Friday December 11th I will be done with chemotherapy and can look forward to a life without the medical intrusion. On the other hand, I am just scared. There is a security blanket factor that undergoing chemotherapy provides, which will be stripped away at the end of this week and all that you have left to sustain you is your faith and your courage. I have lived that life before when Chris was sick, wondering whether the next scan was going to turn your world upside down again. In Chris' case, it happened twice after the first devastating blow. You have to live your life as if cancer is never returning, but that fear is never far beneath the surface.
At the end of the day, life will be better without chemo than it has been living with it. The next chapter of my life will give me a chance to recover physically, emotionally and financially from melanoma. For now, I have to overcome the fear of walking in to the Brown Cancer Center on Tuesday to get hammered for one last time and then get myself ready to drink a couple of beers on Sunday as I close the book on this chapter in my life. Bring it on.

Sour and Sweet

I just glanced at a calendar and realized that my next round of chemo starts two weeks from tomorrow - that's not possible, I just recovered from my last round of chemo. Talk about putting a knot in the pit of your stomach. Then came the realization: this will be my LAST ROUND OF CHEMO!!!! Bring it on! I am tough enough to handle anything for one round. I think that my last day of chemo will be accompanied by the same wardrobe from the first day: time to break the turd shirt out again. I really struggle with appropriately expressing the euphoria: this miserable chapter of my life is almost finished. I will send this chapter out with a bang, details are being worked out and will follow. A designated driver might be in order.
Oh, by the way, cancer can kiss my a**

And then there was one

Round five is officially behind me now, with only one more round remaining. This round wasn't nearly as tough as I expected, it wasn't as bad as the last two rounds. Tuesday was brutal, but Wednesday and Thursday were a relative walk in the park (okay, actually a lie in the bed). I just slept through Wednesday and Thursday and today hasn't been to bad. The headaches started to flare up when I was driving down to Brown Cancer Center, without headache medicine of course; but I was able to relax while I waited and keep the headache at bay until I got home to my medications. I will be sooooo glad to have this behind me.

Anniversary

Today is another significant anniversary in my life: five years ago today I went from a three pack a day cigarette habit to not smoking again. Cold turkey. Never smoked even one after I made up my mind to quit.

Round 5, day 2+

Dr. Chesney changed my medications around differently than I expected. He suspects that my headaches may have been due to low blood pressure, rather than directly to Kytril. so I am able to keep taking the Kytril and just drop taking my blood pressure medications while I am taking chemo. He also gave me a prescription for two headache medications.
Tuesday evening was the worst day that I have experienced during chemotherapy. I spent about three hours in the bathroom, just rotating ends. Rita ran over and picked me up some Immodium on the way over and that helped a lot. The nausea eventually passed on and I was able to sleep Tuesday night.Yesterday I felt a LOT better on day two of chemo than I have in the past. No nausea to speak of and no headaches. I was wiped out. I probably slept about 20 hours yesterday, but at least I didn't feel sick. Perhaps they or on to something.

60 hours to round 5

The dread is setting in. Each round has been tougher (a lot) than the last and I am going into this round with less nausea medicine available. Zofran and Kytril gave me such blinding headaches during the last round that they are going by the wayside and Emend is being substituted. Through the first four rounds, I have only missed Kytril once and I got so sick that day that I never let this oversight happen again. Now I have to walk away from Kytril for the last two rounds, yeah this is going to be fun. I just can't run the risk of the headaches continuing to escalate. They kicked in during round three and by round four I was wearing dark glasses in the house with the curtains closed to try to keep them at bay. It is only two more rounds and I can do this, Chris did much more than this, but I sure don't want to walk in there Tuesday morning.
Tomorrow is the day to clean the house and stock the fridge in preparation for the week. Well okay, to be honest, the house is only going to get so much attention. I told myself that when I got a good job that I was going to hire a house cleaning service, but the rather substantial financial demands of cancer treatment put that on the back burner for now anyway. If anyone comes to visit, they are just going to have to accept me and my messy house the way that we are.
It is only two more rounds and then I am done with chemotherapy. I never thought that I would go through chemo myself after watching Jennie and Chris suffer the massive side affects and then die anyway. I did this for my own reasons and don't regret it, but never again.

On and On

Finally on Wednesday the last grasps of chemotherapy fell away and I felt normal again. I am so blessed to have nearly three complete weeks where I feel mostly normal before the next round kicks off. When Chris went through treatment, it was not at all unusual for him to just start feeling human again when the next round started the cycle all over again. I am so in awe of the strength of Chris, Jennie, Laura and so many other cancer patients that have endured treatments so much more intense than what I have to deal with.
Nurse Bev and I have been exchanging emails over the last week; it doesn't look like they are going to let me change the start date of my next chemo cycle. The doctors like the schedule the way that it is and aren't willing to change it. They are going to add in one new anti-nausea medication to replace Zofran and Kytril. The new medicine is Emend: I take one pill an hour before the first treatment and then another pill on the two days following the last injection. During my four days of chemotherapy, I will only have Phenergan to deal with nausea. I felt so bad the last round, I am really nervous about going into this next round with less nausea medicine on board. I have no option other than to have faith and enjoy the next 16 days.

Post chemo observations

• This round just isn't willing to go away, it is Sunday night and I am still sick to my stomach. The only thing that I have been able to hold down today is Rita's chicken and dumplings. I just tried to snack on some swiss cheese, which I dearly love, but couldn't even get one bite down.
• I am seriously considering asking if I can change my next round to start on Monday 11/12 rather than Tuesday 11/13/07. I have to be ready to go back to work on Monday the 19th because the other salaried person in the maintenance shop is on vacation that week. At this point I am not sure that I can work all day tomorrow and we have established that each round is going to be worse than the last one.
• I am not going to stop treatment now, but if the first round would have been as tough as this round of chemotherapy has been, there wouldn't have been a round two.
• I have to work on finding something good to drink (and drink) next round. I really need to drink a gallon of liquids each day. Soft drinks certainly are not the option and I just can't drink that much water. I can easily drink a gallon a day if I drink orange juice or apple cider, but I am sure that isn't a good thing for my blood sugar and weight. If anyone knows of a real good iced tea, please let me know so I can try that.
• I am going to try to add in some soups next round, it was just too tough to choke much else down last week. The Rubinos make some awesome soup at their restaurant, so I may buy half a gallon before the November round and see how that sets on my stomach.
  
• Thaks to everyone for your thoughts and prayers.
  

At least this round is done

This is sure some kind of fun: blinding headaches on Wednesday and Thursday and severe nausea on Thursday and Friday. The whole week had bad exhaustion. I am just glad that I have three weeks to forget this round, if it started back up on Tuesday I am not at all sure that I would go.
Nurse Bev replied to my email yesterday and told me the they could prescribe Emend next round instead of the Kytril to see if that helps. She also told me that I could increase my Phenergan dose from one every six hours ton one every four hours.

What a round

Dr. Miller was right, each round is tougher than the last one. The headaches on Tuesday and Wednesday were quite intense so I checked with the nurse this morning. I had already stopped taking Zofran for nausea and she said that the Kytril they gave me for nausea is just as bad as Zofran when it comes to headaches. So now I am down to one of the three original nausea medicines that they prescribed for me. On top of that the exhaustion factor has been very high. Am I really going to do two more rounds?

Whew

This round of chemo has started off with a bang. I was at Brown Cancer Center for 5 hours for my treatments today and the last hour or two I was freezing to death, they had to bring me a blanket. When I got home I started burning up (this hasn't gone away yet) and tossed my lunch. I slept for the last 5 1/2 hours and am getting ready to hit the bed again.

There was a country song on the radio a couple of months ago with the refrain "and I thought I was tough" - how appropriate. Nite all.

Hump Day

I am officially over the hump, today started my fourth round of chemo. The mind is a strange and wonderful thing, I got nauseous today as soon as I walked in Brown Cancer Center. Dr. Miller confirmed what I already was pretty sure of, each round of chemo is going to be harder than the last. At least I didn't have to deal with the low blood pressure problems today, I skipped my blood pressure medicine this morning and did much better. I had a new nurse today and he left something to be desired, he poked around for about five minutes trying to located a vein in my hand today before he gave up and stuck the needle into my forearm.
You have to love insurance companies, Anthem still hasn't paid anything on my first three rounds of chemo. I called them today and they promised that I had met all of my out of pocket expenses for this and it wasn't going to cost me anything, but at the moment I am still in hock to University of Louisville Hospital for $60,000 for the first three rounds of chemo.
Just for the record: chemo sucks!

Memories

Eleven years ago today, my son Christopher died. Sometimes the pain of the loss is unbearable. No matter what cancer or anything else has in store for me, I will never do anything as difficult as burying Chris.

Half way through

Fifty percent of the chemo treatments are now behind me! On December 14th, I will get my last interleukin injection and be done with chemotherapy.
This has been another tough round. I have been exhausted throughout, the nausea has been about the same as during the first two rounds and the injection reactions continue. Just to add a little fun to the pot, this round has included pretty intense headaches. What a nice touch!
But this is big picture day, I am halfway done. On Friday December 14th I am buying the first round. Screw it if I get sick, chemo will be done. Anyone who wants to join me is welcome.

Day 2

Into the second day and I am not sure how to classify it so far. I am green around the gills, but I am still able to force food done, so I guess that is a positive things. This round has really wiped me out, I slept 11 hours last night and right after chemo today, I laid down for another 6 hours. I could easily go to sleep right now, but I am worried that this may screw up my sleep schedule. My nausea medicine at home just isn't strong enough to overcome. At least I am not suffering any allergic reaction yet to the injections. Two more injections and then I am through with this stuff.

Round 3

Today was a mixed bag. On a positive note, the chest x-ray came back clear, which is a very good thing. I asked Dr. Miller about the reaction to the interleukin injections and he said that all they can really do is to cut back on the amount in the injections, which seems a little self defeating to me. I will just see how this round goes. He also said that the interleukin injections can cause the severe muscle weakness that I am experiencing, which is really distressing. Again, I will just have to see how this round plays out.
I had a reaction to the chemotherapy today, my blood pressure dropped way down. I noticed that I got feeling really light headed and called the nurse who discovered my low blood pressure. They made me stay around an hour after chemo, pumping fluids in me until my blood pressure rebounded. I was concerned that I wasn't going to be able to drive myself home safely and I wasn't sure how I was going to handle that one.
I am starting to feel bad, I am sure that I hear my recliner calling. More later.

And the beat goes on

Five days until my next round of chemo, boy am I getting excited. I am going in for a chest x-ray in the morning, apparently recurrent melanoma frequently shows up in the lungs first. They will alternate every three months between chest x-rays and PET scans for the next three years and then go to six month scans.
I still feel real good all in all. My strength is coming back, that is a very good thing. I still have a couple of knots on my stomach where I got my injections last time, it will be interesting to see what they do to combat the possible allergic reaction this time. If the reactions to the shot keep getting worse each round, that would be very worrisome.
I finally discovered something positive about the sleeve: it feels so good when you take it off! In all fairness to the cussed thing, it does help. I only wear it to work and last weekend on the camping trip my arm swelled up on me from normal work around camp without wearing the sleeve.
I would rather be fishing or camping than doing chemotherapy next week!

Life's little smiles

This post doesn't have beans to do with melanoma, but it was way too cool not to share. Rita and I went to Graeter's ice cream last night. There was a little boy, two or three years old, sitting by himself on the only free bench. Rita and I sat down on the bench with him and his mom called him over to their bench, but he just wanted to jabber at us, it was a riot. He had a Bass Pro Shops hat on and when I complemented him on his hat that opened the flood gates. Then his big sister, Brooklyn (he was Ethan) plopped her sweet self right beside me and started talking my ear off. She is six and the two of them battled for our attention for the next ten minutes. Brooklyn (not Brook as she made a point of telling us) is in the process of being adopted and told us their whole family story. She even raced over to her dad so she could bring their little brother over in the stroller. Their mom wandered over and stood there listening to the whole exchange, you just couldn't help laughing at their youthful enthusiasm. As they were walking away to go home with their dad, Ethan would stop every five feet and yell 'goodbye' at us. It was really one of the neatest experiences that I have ever had.

A big scare

I had a major scare thrown into me over the last couple of weeks: my strength was going away. I first noticed it when I had to bear down to open a bottle of water, then I could barely muster the strength to start my outboard at the Nolin Lake trip. The whole issue came to a head last Sunday when I went belly boating with my family. There was a light wind blowing and I literally didn't have enough strength to kick my belly boat into the wind. I kicked as hard as I could and couldn't move the belly boat. I had to get out and fish from shore. Then on Monday, my legs ached from the effort the previous day. I was so depressed that I couldn't bear it, if chemotherapy was causing this much muscle weakness after only two rounds, how in the world could I possibly endure four more rounds? This was truly one of the lowest points in my whole battle so far. I was seriously considering discontinuing chemotherapy.
Monday evening, I remembered that my family doctor had just put me on a new medication two weeks earlier. I Googled up the medication and one of the potential side affects was severe muscle weakness. "One of the main side effects of the drug Tricor, is a muscle-wasting disease called rhabdomyolysis." I immediately stopped taking the drug and called my family doctor on Tuesday (who suggested that perhaps I should discontinue the medication). My strength seems to be coming back now, at least it isn't getting any worse.
I hate drugs, even if they are legally prescribed.

What next?

I have finally (mostly) recovered from the last round of chemo and in retrospect, it was a trip. The side affects kept on coming through the weekend. I had an allergic reaction to the injections this time: I got raised red welts, 3 - 4" in diameter at each injection site. Those have finally subsided to the point where there is only one welt remaining. I also case of itching all over my back and to my scalp. It would move from area to area; trust me it was a real joy. That has finally passed as well. I sent an email to the study nurse today describing my reactions to see what they are going to do differently next round to handle this. At least there was one positive aspect to this round of chemo: I didn't have to wear the sleeve for a few days.
At least I have 21 days off before I start this party all over again, I just hope that they figure some of this out before the next time that they practice medicine on me.

Round 2 is behind me

This has been a lot tougher than the first round, but it let up on me today. I woke up this morning nauseous and was anticipating a real long day, but I got feeling better around noon and felt much better today than I expected. I am still a little green around the gills when I move around much, but I was able to eat dinner without forcing myself, which is a very good sign. I expect to start feeling much better tomorrow, I just think that I will avoid fried foods this time.
Two rounds down and four more to go! I have 24 days off before going through this again!

Round 2, Day 3

This has been another miserable day, although maybe not as bad as day three in round one. I have been nauseous all day long, even with staying on top of the Phenergan and Zofran and just generally felt punk all day. Last night I was sick as a dog, on top of the nausea, I had a splitting headache. I decided to run up to get some soup for dinner and the two mile truck ride was almost more than I could endure.
Going through this gives me a new appreciation for the toughness of Jen, Chris and countless others who have endured chemotherapy a lot stronger than my regime is. They walked through that wall of fire fully knowing that they were going to feel miserable and they did it anyway. That is tough, boys and girls. Having two angels looking out for me who were that tough in this life has to give me a heck of a leg up in this battle.
I am ready for this round to be done.

Whew

So far, this round is tougher than the first round was. The nausea has been a lot worse, I am barely staying on top of it even with taking the Zofran and Phenergan regularly. I haven't had any appetite the last two days, I forced myself to eat dinner last night, but it was an effort. I am running a temperature again, currently it is just under 101 and just feel sick most of the time. I did get feeling well enough last night to run over to Scouts for a few minutes to sign merit badge cards, but that and trips to Brown Cancer Center have been my only forays out of the house. Mostly, I am just wrapping a sheet around me to keep warm and chilling out in the recliner. This is just an endurance contest.

Round 2

Tuesday starts my second round of chemotherapy and I am not sure how I will handle it. I am going into this round pretty much on the downhill side of the emotional curve and I have always believed that attitude is a big part of this battle. The loneliness factor is very high these days, I am still struggling with this sleeve and glove and work has been a real bear lately. Other than that I am just peachy. I am working on my attitude but having less than stellar results. This round may be a test of my toughness, because I just don't have the emotional strength to drag myself through this time. Only time will tell.

No fun

After only six hours, I want to go on record that I am not going to like this sleeve and glove. More accurately, I am really going to dislike them. They are tight, uncomfortable and hot. On top of that, the sleeve isn't tight enough on my bicep because of the muscle loss from surgery, so they have to exchange it for a tighter one! Candy want me to wear the cussed things from the time I get up in the morning until I take a shower in the evening. The glove is so uncomfortable that it is very difficult for me to type when I wear it, the glove just restricts movement too much. At work I will just about have to wear long sleeve shirts all of the time, so I can roll the sleeves down to protect this sleeve. I will also always have to keep a glove with me to protect the compression glove, it turned out to be $120 for just the glove, I can't afford to mess that up. I will probably need to keep a light leather glove and a rubber glove with me for my left hand at all times.
The factory where I work is extremely hot in the summer. I went out today for lunch after spending a couple of hours working in the plant and the 100 degree outside temperature felt refreshingly cool! I checked the temperature on the second level in early May and it was already 130 degrees up there. Melting plastic just generates a lot of heat. Just imagine working in this environment with long sleeves and a glove on.
Have I mentioned that I really don't like this?

Fashion statement

I am on the verge of making a fashion statement for Scoutmasters: in the next few days I will be sporting a spiffy new arm sleeve and glove, which I am supposed to wear during waking hours. Candy at Dunn Therapists was much more concerned about the swelling of my arm than Dr. McMasters had been; both because it happened so quickly and that it has swelled up another two times. The sleeve is not supposed to be too expensive, but the glove is going to cost about $175 and only have a life expectancy of six months.
Each time that my arm has swollen up, it has mostly relaxed in a couple of days. However, Candy says that there is a very big risk that the valves in the lymphatic system could get permanently stuck in one of these occurances and my arm could maintain that size. This is all beginning to suggest that I might have to rethink whitewater rafting next summer. I had a ball doing it, but am not at all sure that I am prepared to endure a permanently swelled left arm for a few hours of fun. But then again.....
My fancy new sleeve and glove are on order and at least the sleeve should be in by early next week. Apparantly the glove is going to be custom made, so that may take longer. Frankly, 2007 hasn't been a banner year for me, I am ready for this fun to end.

Reflections on round one

1. Taken as a whole, this round of treatment was not as toxic as I expected and I can certainly do it five more times.
2. Days one and two were pretty much a walk in the park and days three and four were pretty tough. However, I think that I can make day three more bearable by carefully following the rotation of Tylenol and ibuprofen and I might be able to boost my energy on day four by skipping my blood pressure medicine. It is certainly a topic that I will have to take up with Dr. Miller and Bev before the next round. It is day six now and the day has been pretty much free of side affects, only a slight bout of nausea that pills immediately dealt with.
3. The feeling of isolation was not as bad as I expected. As always, Rita was a great help and many of my other friends called to check on me and were standing by if I needed anything.
4. I still have my hair! The doctors say that I shouldn't lose all of it and perhaps they are telling the truth.
5. I was able to eat relatively normally during each of the four days of treatment. I tried fried foods on day five when I met with Linda and Bonnie and that was a poor choice on my part, but as long as I make reasonable decisions eating isn't a problem.
6. Taken as a whole, this round of treatment was not as toxic as I expected and I can certainly do it five more times.

Round 1 is done

I am now officially 1/6 of the way through my rounds of chemo!!! The nurse who has been giving me my injections and the chemo said that today and tomorrow will be the worst days. I have faithfully stayed on top of my regiment of alternating Tylenol and ibuprofen every two hours and I don't feel too bad. I am just whupped. I have been sleeping most of the day and feel like I could go right back to bed. I am guess that the exhaustion may be tied to my low blood pressure: this morning it was ~ 100/50. One of the side affects of the interleukin-2 is low blood pressure. I am going to skip taking my blood pressure pills in the morning and see if I have more gusto about me. This has still been a lot easier than I counted on, I am pretty sure that I can do this five more times. Looking back at the way that I have felt, it is probably a pipe-dream to expect that I can work half days during treatment: I am too sick or too tired or both.
I also saw Dr. McMasters today about the swelling in my arm. He has referred me on to a clinic next Wednesday, so that will be positive.

Up and Down Day

Today has been an up and down day for how I feel. I don't feel as good as I did yesterday, but at least I am not vomiting. My energy level is pretty low and I have been cold a lot; in general I just feel punk today. I was so cold earlier that I spent two hours laying in bed, with a second shirt on and the sheet pulled completely over my head. I knew that I should get up and take Tylenol, but couldn't muster the energy, so when I got up my fever was 100.9. I am able to eat and drink normally, popsicles are quite tasty when I am not freezing; so I am still much better than I expected to be on the whole. It is just hard to be too optimistic when you feel bad.

24

I am over twenty four hours and two treatments into a 4 day chemo regime and I feel amazingly well, all things considered. I have not developed a close personal relationship with the porcelain princess in my bathroom; heck, we haven't even had a first date yet! The nausea that hung around yesterday has been almost non-existent today. My only real symptoms are getting cold very easily and sleeping a lot. I am a dedicated six to seven hour a night guy typically; I slept for 9 1/2 hours last night and have taken two naps today for over 3 hours. Bev (my personal nurse for the research study) said that the first two days would be the worst during treatment; if this is as bad as it gets: bring it on! Other than for the tiredness issue, I could have worked today without much of a problem. I am going to take it easy tomorrow and Friday, but if I continue to feel this good I am going to seriously consider working half days the next round and see what happens.
They had one real disconcerting sentence in the release form for the clinical trial that I signed yesterday. "Follow up every 3 months for 3 years, then every 6 months until your cancer comes back"! I asked Bev about that wording and she didn't understand my issue at first; apparently they fully expect the melanoma to recur sometime, which is a pretty troubling thought. Especially since recurrent melanoma is functionally incurable. All I can say is that I have a lot of people praying for me and they didn't factor that power into their thought process.

So far, so good

I have been done with my first round of chemo for almost two hours now and I feel better than I expected to, which is quite nice. I got moderately sick to my stomach about 15 minutes into the treatment, but that level has maintained for the last hour and a half. The chemo treatment itself was pretty easy, I could pretty easily nap through most of it in their recliner. The interleukin-2 injection afterwards was not pleasant: it hurt quite a lot. The injection is what I will get for the next three days. Doctor Miller's parting words to me before he sent me downstairs was that this wasn't going to be nearly as bad as I expected and based on my progress to date, I am inclined to believe him.
I made my own, unique, social statement with the shirt that I chose to wear for my first day of chemo. I was going to wear the shirt with the picture of Chris and me together from the last summer that he was alive, but changed my mind. Instead it seemed all together appropriate to wear my 'turd' shirt. The front of the shirt is covered with drawings of animal excrement, identified by species. It truly is a classic shirt. We used it on our Canadian canoeing trip to identify bear feces.
I felt well enough after the treatment to drive myself home and have every intention of driving myself to the interleukin injection tomorrow. It may change later on this evening, but for now I am quite delighted with how well I feel.

Tomorrow

I am some kind of excited (that is sarcasm boys and girls), my first chemo treatment is in 16 hours. I have been getting myself psychologically and physically prepared. Last night I spent a good long time looking through pictures of Christopher and praying. Today has been more on a practical level. I hit the store and bought some drinks and instant oatmeal; surely to goodness you can eat oatmeal even if you don't feel too proper. Next was a quick stop to clean the bathroom: I figure that there is a pretty good chance that I will be hugging the porcelain in the next few days so it better be clean. Then I arranged all of my required medications on the entertainment center so they are close at hand. Physically, I guess that I am as ready as I am going to get. I am working until about 11:00 and then will head home to drop off the truck. Rita is meeting me at the house and taking me to the party. In case I haven't told you enough, you are a God send, Rita. Thank you so much for everything that you mean to me.
One of the worst parts about this whole thing is the feeling of isolation. Rita will do anything that I let her and I have countless other friends that would gladly help me in any way that they could; but the simple fact of the matter is that 95% of the time when I am going through treatment it is going to be me and the black dog. That is a little daunting. I pride myself on being an independent, self reliant S.O.B., but this may test the self reliance. Chris is my anchor: he was tough enough to do this and I am too.

Still Swelling

The swelling in my left arm just isn't going away. This is the fifth day since the raft trip and the swelling is still there. It is not as bad as it was Sunday, but my arm is still noticeably swollen. On Tuesday I helped pick up some junk at work and my arm swelled up immediately; right back to Sunday levels. I called Pam today and made an appointment to see Dr. McMasters next Friday; I just want to be able to do things like whitewater rafting in my life. At least as importantly, I work as a maintenance manager, I have to be able to use my left arm at times in physical tasks to do my job. Perhaps I will be sporting a spiffy new compression sleeve in the near future!
Five days to chemo. We have a camping trip on Saturday night, so Sunday afternoon and Monday are going to be the days for getting ready to be sick for four days. I'll clean the house and bring in some groceries that I might be able to eat despite the nausea. I only wish that I knew what that was.
I just had to add in a picture from our raft trip, it was just too much fun. It may not make sense to you that I went whitewater rafting, but Chris would be proud of his dad!

Swelling

I went on an awesome whitewater rafting trip on the New River with friends this weekend and had a glorious time. This only issue is a fair amount of swelling in my left arm today. My hand is very noticeably swollen, the skin on my forearm is stretched fairly tight and mobility is somewhat limited. The rafting was a fair amount of work, but my arm didn't faze me yesterday and I really thought that all of the moving and work was a good thing for my arm - perhaps I was mistaken.
The other odd side affect that I have noticed is that the glands in my neck swell with a very small amount of exertion or exposure to heat. I work in a very hot building, so the swelling is quite often an issue at work. I only hope that this is a side affect that will go away with time.
Seriously, if you ever get a chance to go rafting on the New River, go for it. There was a nice balance of beautiful scenery and rapids that would get your heart racing without being too overwhelming. By the end of the day we were making plans to do an expanded trip next year, which is a good testament to the adventure.
My first round of chemotherapy starts a week from Tuesday, I am not sure if I am ready, but we will find out soon enough. Chris is going to be my rock through this trauma: he was tough enough to do a lot stronger chemo when he was barely a teenager, I am sure as hell tough enough to do it at my age.

Prescriptons

I picked up my prescriptions to combat chemotherapy nausea today and it is the same stuff that Chris took 11 years ago: Zofran and Phenergan. Some things never change, I guess. Just over three weeks until chemo round number one, it is kind of a scary thing. I just got back to work last Wednesday and I need to miss three and a half days again in three weeks. It takes awhile to get back into the flow from being gone five weeks and then I will be out of the office again. I just hope that they are telling the truth and I feel pretty good after the four days of therapy are done, but we will see.
I am heading out Tuesday night for two days at Shakamak with my family. Carol was going to join me but backed out because of way too much family in one place for too long. I am just going to stay through Thursday afternoon and then I am heading back to help out with maintenance coverage at the plant while Kevin in on vacation. My poor boat has only been in the water twice so far this year between personal issues and this cancer, that just isn't good enough: I am usually in the water twice before it is April. I am looking forward to a couple of days of fishing. I will just have to be careful in the sun for a change of pace. I am the proud owner of a couple of new long sleeved fishing shirts and a couple of wide brimmed hats, anything to keep the sun at bay.
I didn't mention it earlier, but Dr. Chesney explained the one in eight chance of getting a new melanoma, totally unrelated to the first one. It turns out that recurrent melanoma doesn't manifest itself as a mole on the skin, it is below the skin or in an organ; so any new malignant mole is a new melanoma.

Clear Scans!!

I met with Dr. Chesney today and the PET and CT scans from last week came back clear of any melanoma. What a relief! It wasn't an easy job to get that information from him: first he wanted to talk about interleukin-2 until I insisted that we talk about the scans first. Then he went over every abnormality that he saw in the scan and why it was meaningless until I finally asked whether or not there was any melanoma.
In their own special insurance company mentality, Anthem will not pay the cost of the medications if I do my own interleukin-2 injections at home. So rather than being able to get by with only two days off of work per cycle, it looks like I will have to take off from Tuesday afternoon through the rest of the week. I scheduled my first dacarbazine/interleukin-2 cycle for Tuesday July 24th. I think that will allow me to complete my scheduled six rounds of chemotherapy without interfering with any plans that I have made right now, assuming that I don't hit any delays along the way. My treatments will start on July 24th, August 21st, September 18th, October 16th, November 13th and December 11th and then I am done.
I had my final regular visit with Doctor McMasters today before I saw Dr. Chesney and he made a couple of points. He reiterated the fact that the melanoma cells that they found in the one lymph node were microscopic was a very good thing which should improve my five year survival numbers to something between the published 70% for stage 3a and the 90% for stage 1b. Dr. McMasters also said that it was a crap shoot between my three options of interferon, dacarbazine/interleukin and simply watch; any of the three was a reasonable choice. My chosen option of dacarbazine/interleukin-2 is intended to destroy any cancer cells lurking out there that were not detected by the CT/PET scan. The toxicity is relatively low for this course of treatment and it makes the most sense to me of my three options.
I stopped by work after my appointment and gave them my release to return to work form (about time). I talked to my boss about my vacation which had been scheduled for next Thursday and Friday, but we need to talk more about it. There is no way that I can get the whole last part of the week off (our plant runs 24/7) so I am going to try to get off next Wednesday and Thursday and then be back on Friday and available to help cover the weekend. I just know that it will be good to get back to work after five weeks.
Thank you very much for your prayers.

Crud

It just occurred to me that this crud in my throat is going to screw up my plan of starting chemotherapy on Thursday. I see the oncologist on Tuesday and there is no way, even if I get a clean bill of health from the scans, that they will let me start chemotherapy if I am still fighting this thrush infection. I have been on the prescription for thrush for four days now and it hasn't cleared up, it is better but not good and I have less than two more days until I see the oncologist. All of these potholes along the path make the journey a lot more challenging.

Progress

My throat is better, but still not good. I still have a fair amount of discomfort from the thrush infection. The pain isn't enough to keep me up at night, but I still know that it is there. I just hope that it keeps improving, but I have some concerns.
The site where my drain tube entered my back is nearly completely healed over. I haven't had more than just a spot of seepage on the gauze pad in the last three dressing changes, so I have moved from gauze pads to bandages. I tried cloth tape on the gauze pad a week or so ago and what a mistake that was, I now have a couple of good blisters from the tape. Give me a break.
The PET scan was supposed to drive my blood sugar way down for two days and I was to skip blood sugar medication until the third day, but I should have waited another day. I had to eat non-stop on Thursday to keep on top of my blood sugar. Have I ever mentioned how much I enjoy the side effects of these medications and treatments?
Next week will be a big week. I meet with Dr. McMasters and with Dr. Chesney both on Tuesday. I assume that this will be my final visit with Dr. McMasters. Dr. Chesney will give me the results of the scans from last week, so this will be an anxious few days. They will not pursue the prescribed course of treatment if any additional cancer shows up on the scans and I am not at all sure what I would do if the cancer has spread. Realistically, I am going to be alone the rest of my life and quality of life decisions may come earlier for me than they would for other people. On the positive side, there is not any reason to expect the cancer to have spread: it was in the sentinel lymph node only and not in the 17 other nodes that were biopsied. It is still kind of hard to be optomistic given the journey so far.
I assume that I will be released to go back to work on Tuesday, but then the whole question of the timing of chemotherapy comes into play. If I have my choice, I will start chemotherapy on Thursday June 28th. That will give me one day back at work before chemotherapy starts and then take Thursday and Friday off. Then the following week is the fourth of July week, where I have two days of vacation scheduled and a rafting trip the following weekend. I will have to have some serious discussions with my boss, I certainly can't afford to risk my employment right now.

Some new fun

My throat is getting really sore now, yesterday it was quite uncomfortable. I had a regularly scheduled appointment today with my family doctor and he told me that I have a thrush infection in my throat. Thrush is a yeast infection that was certainly caused by taking the high strength antibiotics for the MRSA infection at my lymph node drain. You've got to love it when the cure is also part of the problem.
Facing a life threatening illness is a big enough load all by itself. Combine that with the recurrent risk of losing your best friend along the way and this ride really sucks.

Scans

Today is PET and CT scans at Brown Cancer Center at 1:00 PM. They tell me that I have to eat low carbohydrate meals on Sunday to keep my blood sugar low and the I can eat (low carb of course) this morning before 7:00 AM. I get up at 6:00, eat breakfast and lay back down for an hour or so. I check my blood sugar after I get up and it is over 200 - cr** that is going to screw up this test. So on the treadmill I go and two miles later my blood sugar is back in an acceptable range.
My throat is getting sore today, I hope that I'm not coming down with a cold on top of everything else.
I am am Brown for three hours doing the test, about an hour in the actual scan room. It was tight quarters, but I survived the closeness. The worst part was having my arms strapped at my sides (tightly) since I still couldn't keep my left hand behind my head because of the recent surgery.

Be Gone Tube

My drain flow for the last two days has been 20 cc or less. The magic number is a drain flow of less than 30 cc's per day. I call Pam to schedule having the tube removed and have every expectation that she will give me a return to work form for next week. The tube removal was child's play, but then came the hitch. Pam thinks that I look 'peaked' and is not willing to allow me to return to work until Dr. McMasters returns on Tuesday June 26th!!! I have already been off work for four weeks (three without pay) and now am looking at an additional week.

Free at last!

Released from the hosptial! It was up in the air whether they were going to have to leave the PICC line up me and give me IV antibiotics at home or whether they could find an oral antibiotic. When Dr. McMasters comes in Monday morning he says that they have found an oral antibiotic, so he is going to have my PICC line removed. I ask specifically whether I should have the prescription filled at the hospital and he assures me that I won't have any problem at my neighborhood pharmacy. Laura gives me a ride home and after a little while, I head up to the pharmacy to fill my prescription.
Let the fun begin! The pharmacist tells me that Anthem BCBS won't fill my prescription because it required approval and that the doctors assistant Pam had already left for the day. The prescription of 20 pills was $1,500. She told me to go home and she would keep trying to get something worked out with the doctor's office. I am in full panic mode now. I realize that if I can't get this prescription filled I will have to be readmitted to the hospital and have the PICC line put back in. I returned Susan Cox's phone call and Garrison happened to pick up. As I described the nightmare to Garrison, he told me that he had the $1,500 and that I should go get me prescription. Talk about thinking outside the box! That suggestion make me realize that I could go buy two pills on the prescription ($155) which would give them all day tomorrow to work out the details rather than just an hour or less. Thank you Garrison! I buy my two pills and Pam works things out on Tuesday in less than half an hour! When I got home from the pharmacy, I just missed a phone call from the doctor's office, my voicemail message said that they were readmitting me to Norton's Hospital so they could continue the antibiotic. Talk about a close call!!

Infection & back to the hospital

Katie Caswell helped me out Thursday night changing the dressing on the wound where the tube entered my body. The gauze pad had a lot of red puss looking stuff on it and when I looked in the mirror there was about a 2" diameter red circle around the tube hole. Friday morning I call the home health nurse and ask her to come out right away and after her visit I call Dr. McMasters' office. His assistant Pam calls me back later and tells me that they are readmitting me to Norton's Hospital for the infection. It is about 7:30 PM before the hospital finally frees up a bed.
On arrival at Norton Hospital things are pretty low key until about 9:30 PM when someone finally gets around to reading the culture that Dr. McMasters took on Tuesday and then the pace quickens. They put me in semi-isolation for a staph infection (MRSA). Apparently I will always be placed in semi-isolation on future stays at Norton's Hospital. They put me on two high strength antibiotics and have to install a central (PICC) line in my right bicep on Saturday to prevent the antibiotic from blowing out my veins. This is going to be fun!