My mutations mutations.

 My mutations mutations aren't the right mutations. In other words, I am in the 90 percent who do not qualify for the new targeted therapies. So it is either the old chemo or no chemo. I guess that makes my decision easier now that one option has been removed. I knew the odds to start with so this does not come as a surprise, just a disappointment.

The balancing act

     I am sorry to tell people this way, but it is the easiest way for me. I have not posted for a very long time. It seemed that the battle had become stagnant. Many more rounds of chemo and very little change in condition. It finally reached a stage where I could not do another round. I struggled with the decision to stop chemo and take a break with the hopes of gaining my strength back in readiness to continue the battle. As it turned out I don't feel all that much better. I have been suffering with a lot of nerve pain, some of it ,crippling. Lateral damage from chemo. The fatigue is ever present and I have become very weak although not frail.. Some times I do not have the physical strength to turn over in bed or it hurts too much. General day to day living is hard. Little things that most people take for granted can be a struggle for me, ie; picking something up off the floor, putting on socks, buttoning a shirt, getting in and out of a car is a major task. You all get the point. A lot of people only see the " up" me. I tell you all of this because Goliath has taken the opportunity  to invade again and take up new positions. He has again taken position in my mediastinal lymph nodes but has strengthened his position by spreading into my lungs again. Three nodules this time and they are very small, but still!
   This is where the balancing act begins. Quality vs quantity? And what is that now? More biopsies to see if I qualify for new biotherapys. There are still so many questions. How much more can I do and still cope with let alone function. It is not a question of desire or will. It is a question of how much can my body take? At what point is the treatment more damaging than the desiese? The emotional quality of life is spectacular. Life with Denise and Michelle is great. They are my tower of strength. The physical side is becoming a battle.I,in my spirit is not ready to give up but my body is telling me different.

Half as long as before.

My first remission lasted eight months, this remission only four months. Last pet scan shows progression. More lymph nodes in my chest. A very small outbreak but it means back on chemo!
It has felt good to feel good and have some energy and feel like I am getting stronger
The break gave me time and strength to be able to "be there" for my daughter Lauren and my mother. For this I am truly gratefull.
I was hoping that the fight was over but I am glad for the time I got. It gave me time to gain strength and energy to get back in the ring. As I have said before, "It is time to get my butt up off the stool" Ding-Ding.

I did it again

As of today I am in remission again. My latest pet scan shows all clear, and no sign of metastasis. I am thankfull that the treatment has worked again. I am relieved to say the least. I can take a chemo break and let my body heal. I am in hopes that this chemo break will last forever!!!

Is this the last time?

I have completed 7 rounds of phase 2 and felt pretty good for a change. That is a total of 31 rounds of chemo in the last 38 months. I have thin hair, alligator skin, nerve damage in my feet, blurry vision in my right eye, chronic fatigue and a lot of digestive problems all due to chemo. I have one more round scheduled and then a pet scan on Sept.28Th. I am in hopes than 32 rounds is the magic number. I hope I have reached the end of a very long battle. I can live a very good life with the battle damage I have gotten, however I would like to stop receiving all the chemical disbursements and let my body heal. My spirit is not broken and I still have resolve to continue on if necessary. Lets hope there is no longer a need.

The results are in.

After waiting for a full week we finally got the results of my latest PET scan. The results are encouraging. The treatment is working and Goliath has been reduced, but not eliminated. However there has been no futher advance. So today we started round four phase two and there is an undertimened number of chemo rounds to come. To coin an old exspression I used to say way back in the 70's.....I am going to keep on keepin on!

Better than before.

Well I have done two rounds now of my second phase of chemo. I am very glade to say that I am doing fine and feeling a lot better this time around. This chemo cocktail isn't as strong as the first cocktail or should I say as hard on my body. This isn't to say that this time isn't with out it's difficulties. I am able to function for the most part and keep somewhat active. I am able for the most part to get out and around. I have settled into a chemo routine now and can plan life around that routine so I have a life and I am making the most out life as I can. I have joined a hotrod club, the Golden Gate Street Machines Unlimited and making new friends here in Belmont. I am going to and participating in car shows and have plans to do a large upgrade project to my truck and do all the work myself, the old school way, no lifts, just jacked up on axle stands and crawling under the truck. Hard work but satisfying. A great feeling of accomplishment and pride in my ride because I did all the work. That makes it uniquely mine. Right now I need things to do. I have the time. It takes me a lot,lot longer to get things done, but there is no rush, however I do set myself completion dates for my projects otherwise nothing would get finished. I do not like doing chemo, but doing chemo means I get to do so very much that I would not be here to do otherwise. This is month 24. This is a very special month for me. I was told 24 months ago by my first oncologist that maybe, just maybe, they could give me and extra year with treatment and I might survive up to 24 months!!!! Here I am enjoying life and playing hotrodder, enjoying my family and not going anywhere soon, could it get any sweeter???

Round 25 or round 1b

I am not sure what number to assign to my chemo rounds. It is a new venue so 1b fits but the same opponent so 25 fits. Whatever it is I had it today. I have never felt so tense and apprehensive about having to do anything in my life including chemo the first time as facing and doing chemo again!! I did not know how I would feel the first time and it grew harder each round because I felt so much worse each round but the decline in Goliath each time we checked gave me the fortitude to push on another round. This time the fact that he is back and has overcome the very best we could throw at him. The fact that we are not physically able to do the big power house drug Oxaliplatin due to the nuropathy and nerve damage it caused last time and knowing how it feels being on chemo has left me feeling awful. I am now doing second line chemo. It is second line because it is not as effective as the first line. Goliath is stronger now although not as large and the chemical dispersants left in the arsenal are not as potent. I will get an infusion every day this week. They will be a push/injection of 5-fu and Lucovorin into my port. The longer the battle goes on the harder it is to muster the strength to 'do it again'

Putting the cart before the horse.

I think we have at one time or another let our emotions and feelings take us down the path of forboding and despair, thinking the worst and not seeing the bright side. That is how I have been feeling lately, letting my feelings run away with the practical me and filling my head and heart with the worst. The report from the radiologist painted a bleak picture. The thoracic surgeon showed me images of the hot areas and made it look like a lot. I came away from that consultation with a sinking feeling in my stomach. I know haveing a good outlook and attitude is important to one's well being. I have kept my chin up and have had a positive attitude for most of my battle with Goliath. But some times despair does take hold and I get down. I am glad to say that my visit with Dr. Semien my ongologist has shed new light and I have regained my positive attitude.

She feels that Goliath has set up a very small camp and that there isn't much to worry about, however she wants me to go back on chemo and check on Goliath after five rounds. As it turns out five rounds is five months. A round will consist of Avastin, Flourouricil-F-5u and Loucovorin infused into my port five days in a row once a month and then Avastin every two weeks for one infusion. This is going to tie me to hospital/infusion for eight days a month. The Redwood City facility is very busy,crowded,and disjointed hospital. Compared to Antioch's new facility it is a dump. I know, I know ,you are thinking eight days? Yes eight days, I have to do blood draw two days before every infusion. That will be two days a month for labs and six days a month for infusion.

I have decided to do chemo again partially because Goliath has not spread as bad as I was lead to believe and because there are new drugs available to me if need be that weren't available last time I did chemo. These new drugs are called Biotherapy and not chemotherapy. The drug Avastin is a drug I did before with very good results and was the newest drug two years ago and is a biotherapy drug. Now there are one or two newer ones. These drug are so specific that only people without a certain type of gene mutation are able to benefit from these new biotherapies. I do not have that mutation so I will be able to have these drugs if needed. So there is a new truth!! I will keep on doing what is needed at the time to fight Goliath. It is too early to give in. This battle is turning into a long one and I won,t let Goliath beat me mentally. He will have to beat my physically. He may eventually take my body but he will never get that part of me that makes me me!!

Somewhere between here and there!

I have always been the kind of person that can deal with most anything when I know what it is I am dealing with, even the end of life because that is part of life. I have always believed that what separates us humans from all other life, is that we have emotions and we have the mental power to decide everyday how we choose to act and what attitude to have and how we treat each other. We can choose how we are going to deal with problems. I also believe in the truth, what ever it is and live by it, to make my decisions based on the truth and to not act until I know the truth. , and then above all else do the right thing , even if it is the hard thing. I have not always done things this way and I have reacted and made some very major life changing decisions based on emotions and not the truth and the right thing. Not only I have paid the price in hurt but my loved ones have paid an equal or higher price than I. I have been faced with many very difficult decision in my life and have sought the truth and then decided as to what I thought was right at the time. The right thing very often involves the best for somebody else, not just you. We all know what I am talking about. I have always tried being the best man I could. To me that meant always trying to be the best husband by doing the right thing for my wife and trying to be the best father and doing the right thing by my kids. I have not always been the perfect man and I have fallen short . But every time I have failed I looked forward to a time I could put it right or I learned and did the right thing the next time. I have found that if you seek the truth the right thing becomes obvious, until now!!!

I am faced with the biggest decision of my whole life and so very,very much rest on what I decide and I have no answers. I do not know what is the right thing to do by my wife or my children. Nothing is clear to me. I am stuck somewhere between here and there! There is logic to employ, but this situation is not one of logic. This time the truth doesn't show me the right thing to do. The truth is open ended with no clear indication as what is the right thing and no one can give me the answer.

The dilemma is a quality vs quantity of life issue. Here is the truth. I am now in the advanced stage of cancer and I know that my passing will come relatively soon. I do not know if it is months or years. So what form of me do I give to my wife and child? Do I give them months with me not on chemo and feeling pretty good and active and able to go places up until it hurts too much and then do pain killers, or do I do chemo and feel sick a lot and be tied down to hospital and not be very active but be around a little longer, maybe a few more months! What me do I give them? It was believed Goliath would get me in about 24months. Well that was 12 May 09, 19 months ago. I responded better to chemo than my Dr's. thought so maybe I reset the clock. I am not certain. It was very good and set us on a mountain top but now we are on the way down and reaching the end. One of the hardest things about cancer is the emotional side. It not always the physical. The physical just happens. It is the emotional stress that is the most difficult. Treatment just prolongs the inevitable and treatment is very difficult to do. The emotional stress is felt by all in this family,daily. It is very stressful for Denise, her husband has cancer . There is no security. Michelle a 14 year old , who is at that awkward stage in life, has a father who has cancer. That is not something she should have to deal with!! It is the emotional stress that eats away at a soul not just cancer in physical form.

It,s all in the genes

Yesterday was a consultation with a thoracic surgeon. We saw the images from the pet scan on the computer screen of the affected lymph nodes. I was somewhat surprised. I was under the impression that three maybe four nodes were involved. That is the surprise. There are three maybe four groups of nodes involved with four or five nodes per group.

The reason my oncologist wants a biopsy is to find out what gene type my cancer is. Apparently there are three known gene types of colon cancer and they can give type specific chemo. However my oncologist is going to see if this information is available from my previous biopsy tissue. Kaiser keeps tissue from biopsy's and surgery's just for this purpose. If it is I won't get a biopsy, if not the Doc will take a biopsy from an involved node in my neck above my collor bone.

So, for now we are on hold, untill Doc comes up with a treatment plan.

Here we go again!!!

Well, it has been 10 months since my last post. That is because I have been in Neds since Feb.2010. I continued on chemo untill May that year, doing a total of 24 rounds, before deciding to give up chemo againts my Drs. whishes. I was told that if I continued chemo, Goliath would at some point become chemo resistant and begin to grow again. I was also told that if I took a break from chemo and let my body heal that I would be stronger to fight Goliath when he returned and he WOULD return, stronger this time and chemo resistant at least to the chemo regiment I was on the last time. I have been off of chemo for 8 months.

Here we go again!!! My last C/T scan showed mediastinal lymphadenopathy ( enlarged lymph nodes in my chest along my windpipe and between the aorta and the pulminary vein that exits and enters the heart.) A following PET scan confirms the findings. Consult with a throasic surgeon and a biopsy to follow. We have to go through all the diagnosis again but we all know the results, it's all a formality. If the biopsy confirms that it is indeed Goliath, it means that he has survived our best attempt to destroy him and he has moved again. The lymph nodes involved are different ones than last time.

This time is not a surprise. We have been keeping a vigual in the order of quartly C/T scans, holding our breath each time waiting for results and breathing again each time I got the all clear.,however I was hoping for more than 8-9 months.

The time off gave us time to move from Oakley to Belmont, get Michelle into a new school and Denise established in her new job. I was feeling so good that I was searching for a job. I even put in a few applications. Not to be! I guess I now will need to put all my effort into battling Goliath.

VICTORY!!!

As of today, February 11th, 2010, ten months and 18 rounds of chemotherapy after being diagnosed with stage four metastatic colon cancer to left lung and four mediastinal lymph nodes, I am in full remission or NEDS.( no evidence of disease.) Goliath has been defeated!!!

I am overjoyed to say the least.!!!! This is the best news possible. My battle with Goliath will never be over, but for now Goliaths troops have been destroyed and we just need to keep guard against any new uprising. We will do that with constant vigilance and continued chemical dispersal, to quell any rouge cells that might be hiding out in undisclosed locations.

Thank you all for your prayers and support. Everybody,s best wishes and help is very much appreciated. It has been a very emotional and stressful period of time for my family and I. Now maybe we can get back to a little normality and start living an active life again. It is a wonderful feeling to be able to look forward with hope, vigor and longevity instead of uncertainty and foreboding. To quote an old TV personality of my childhood and the 50's, Jacky Gleason of the Honeymooners, " How sweet it is!"

Grounded due to weather

Day one round 18. That's 36 weeks,or nine months. That's full term isn't it ?I have been through, nausea, the cravings. The mood swings. The cold sweats, The urgent need for a rest room, and failed to make it in time. I know where every rest room is every place I go or find out if they have one before I go. I have monster sized cramps and sometimes I swear there is something moving around in there!! I know how hard it is to get up from the couch or to get in or out of a low car, or how frustrating it is to even reach my feet to tie my shoe. Well maybe that part is just because I am fat. Well you get my point. Is it remotely possible? Could you even Begin to imagine what might come out!!!!!! I proudly humble myself to all the wonderful mothers of the world.

I am going a little whacko. back on the steroids you know, and the week before my big scan and I am both hopeful and worried about what we might find.
I am so close to NEDS, however the longer one is on chemo the more likley that Goliath has built up resistance to the chemo. I am not out of the woods yet.

The weather has been overcast with winds and lots of rain, so my maiden flight has been delayed due to weather. It has given me time to tweak on it and come up with a simple solution to the battery position security, which brought the plane into balance. I have also masterfully diagnosed the flap malfunction. I didn't have the lead plugged in!! I also slightly modified one of the wing retaining pins and can now install and uninstall the wing. This makes for easier storage
It was fun having John helping me put it together. You know what they say about men and thier toys.
The weather looks clear this morning. Maybe I will run down to the airfield and see if there is any flying going on. Think I should give John a call and maybe we both can go out to play!

Flying high

Yesterday was infusion day (round 17) and back on the Oxaliplatin and steroids. Some old side effects are reappearing, ie; mouth cramps. Unable to drink any thing cold, an orange hue to my skin, headache. I feel heavier like I gained 50 pounds. I am feeling the fog rolling in again and I am off my feed. I kept pretty busy today. The steroids kicking in.

I have decided to move on in life and have decided to take up flying model airplanes. Why flying? It's in my blood. I have always wanted to fly. There have been so many pilots in our family. There has been Lt.Charles (Chuck) Porterfield, Copilot, B-24 Liberator. Lt.Robert (Bob) Densmore. Copilot/Pilot B-17, Flying Fortress. Both honorably Serving their country during the hostilities of WWII serving with the 8Th Air Force in the European Theater of Operation. Then there was Ltcdr,Troy Porterfield, USNR ,Pilot, flying A Grumman Avenger off a small aircraft carrier in the Pacific Theater of Operation as well as Lt. Leonard Porterfield, USNR, pilot, F4F-Wild Cat Fighter, also flying off carriers in the Pacific. Also during WWII. Troy and Leonard were cousins of my father. Grandpa David's brothers boys. And we should never forget to honor these men. My Dad took flying lessons for a time. He too has had the joy of controlling an airplane. I spent four years in the Air Force wrenching on F-4 Phantoms and then F-15 Eagles. I have been a passenger in a P-51 Mustang. What a great thrill , a C-130 several times ,and several types of Helicopters when working Offshore. And continuing on in the blood line is now, My sister Karyns son, Chris Murray, Copilot with American Eagle flying passenger aircraft.
So now I am too old and physically unable to take up flying real airplanes, But these models are real airplanes. They are smaller in scale but they fly by the pilots input. I will use a remote controller. I of course will be standing on the ground controlling the aircraft so I have to fly by sight and not feel. However I will need to employ all principles of flight. Responces are quick. The aircraft I have chosen to buy and fly is a Cessna 182 Skylane about 3ft.in length and a wingspan of four feet. It's prop driven by electric motor and made of Z-foam .Z-foam is strong and light and repairs easily with glue. It is a high wing with tricycle landing gear, good for novice flyer's. It has throttle control ,elevators, rudder, ailerons and flaps. It also has running lights and landing lights. The nose wheel has steering and a shock absorber. Sounds way to cool for a novice pilot but this airplane is a trainer. I have also bought a flight simulator and have logged a lot of hours on the sim. Basic flight school. I have upgraded the controller and receiver and the controller has dual rate settings- low and high. Low for novice and high for more experienced pilots. Having flaps seems a lot for a model but it allows for dead slow landings, a good thing for novices. If you are interested in seeing this airplane Log onto http://www.flyzoneplanes.com/ and click on RC planes then click the airplane top right. Cessna 182 Skylane RTF & RXR. Flying one of these small aircraft is not easy and is a challenge. That is why I like it. It will give me a sense of accomplishment to be able to master the skill of basic flight and to continue to improve and master faster and more responsive aircraft. In model aircraft the most challenging aircraft are multi-engines. One of my flying goals is to own and fly a P-38 Lighting. I will name it the Charles L Porterfield II. So in honor of all the fly boys in the family, I am going to sign off now. over and out.

Clear as mud, or boy am I confussed.

Had an oncology visit with " DOC" and she expressed her concern about having too many C/T scans, saying they pose a risk of generating Cancer!! That the radiation was harmful! I replied in a dumb founded mono syllable fashion, They use radiation to cure cancer, don't they? And the chemo, Oxaliplatin is an internal form of general radiation,Right? She answered yes to both questions. So now I ask ,doe's the risk of getting cancer from the scans pose a bigger risk than not checking on the cancer I all ready have?? Boy I am really confused now. God forbid I might get cancer!!!Holly smolly, this next scan might give me cancer and then what? Do I go and get radiation treatment for it?? Or even worse, I might have to get chemotherapy treatments!!! OH NOOO!!! Wait a minute! Is this a joke or something?. Your pulling my leg ,right Doc? Well that's not exactly how the real conversation went, but that is what was running through my mind. It's all to crazy for me sometimes.

The next scan will be sometime in February,when ever Imaging will call and set up an appointment. It will be a full torso scan from my hips to my neck and we will use it as the new baseline. This scan will check all organs and some bones. I am hoping and believe I will be in NEDS. I have to do a small amount of prep for this scan, like take Banana flavor barium drink!( banana-yuck-gag ) Why don"t they give us a choice. Sir, would you prefer cherry or perhaps chocolate fudge ripple with whipped cream and nuts? Or maybe even bacon flavored. Everybody loves bacon. Anyway I digress.

The results of the scan will effect how my treatment go's. If there is any evidence of Goliath, then I will remain on full Chemo, with oxaliplatin. If I am in NEDS then I will start a maintenance chemo,What I am on now. It is the same drugs just less the oxaliplatin, and maybe a slightly reduced dose. It,s not perfect, but it is way, way ,way better than the alternative.Wow, the phone just rang and it's Imaging. February 8Th. is the scan day. So lets toast scans, It was scans that found Goliath and maybe it will be scans that show, That Goliath has been defeated. SCANS ,HEAR ,HEAR!!

The never ending war

Yesterday, Dec,8th was infusion day, round 14. It was also bubble burst day! Denise and I had a sit down chat with Dr. Kengla, my oncologist. I was hoping that one day to be Goliath free and never need chemo again. That is the bubble that was burst. It was made clear that being in (NEDS) does not mean Goliath free. It only means that the tools available ie; ct scans and blood markers are unable to detect it. Because I have metastatic disease it means that even if we can't see Goliath by conventional means, it is still there lurking under the surface in the form of micro metastasis and is constantly trying to invade and establish its self in distant organs.
There is two other problems with this type of cancer. The first is that for unknown reasons this cancer leaves no identifiable blood markers. The post oncology tests after my colectomy were blood tests and they showed no markers and we know how that turned out!!! This means that we can not use this method to keep track of Goliath when I am in Neds. The second problem is that if I take a chemo break it is very likely that Goliath will reappear only this time it will be chemo resistant. Seeing that chemo is the only tool that is available we can't take the chance right now to risk loosing that!!!
The plan is to finish this block of chemo which is two more rounds(rounds 15 and 16) with out Oxaliplatin which will take me through the Christmas break then back on Oxycrappin as my son calls it for another block (8rounds) and monitor the nueropathy.This is going to be hard.!!! This also means back on the steroids as well. When I finish this block it will be one year on chemo!! We will continue to get ct scans at intervals and battle Goliath. The never ending war. I will get into NEDS and I will continue on a maintenance program or maybe take a chemo break and prove them all wrong a second time!!!!

The great disapearing act.

I have not posted any thing of late just because not much has happened concerning my battle with Goliath. It has been the middle rounds and things haven't changed much the last few weeks. I have had a nice visit from my Mom and some good outings with Cousin John on his boat, fishing,shooting the breeze, and hanging out!
I have felt better these last four rounds without the Oxaliplatin. I found out last round from my infusion nurse Luke, that the platin in Oxaliplatin is platinum, a heavy metal. So the reason I feel so ill on the Oxaliplatin is due to heavy metal poisoning.
Now for the good news! The chemo treatment is working very well. We have beaten Goliath back and eradicated most of his troops. I had a CT scan Thursday the 12th of November. The results are amazing. The tumor in my lung has shrunk since the last scan in August and is now being called a lesion. There is very little of that tumor left. All the tumors in my Lymph nodes are gone!!!!! The report from Kaiser states "Decrease in size of left lower lobe lesion compared to 8/29/09. It also states "No significant Lymphadenopathy is identified." If you remember the report from August said that Goliath was reduced by around half. Now the report is telling me that four tumors are gone and I am left with only one small tumor in the lung .
This makes the hope of reaching NEDS ( No evidence of disease.) very realistic. This is a huge emotional swing from being told that my cancer was incurable to the thought that I might be cancer free in a few more rounds of Chemo. Goliath his met his match!!!!

About Face

I must have jinxed it. The very day I post that I am sleeping all the time and how good it is ,is the last day I have sleep well!!!! I wonder if all that sleep was a prelude to my seeing double and falling over three times and another trip to emergency. The doc's don't know what caused it but suspect a small stroke. I have felt pretty good since then. O' crap,I opened my big mouth again. I hope I haven't jinxed it twice.I need to learn to keep my mouth shut, but I am a Porterfield, I have the motor mouth genes!!!!

Sleeping Beauty with a beard.

There has been good news treatment wise. I have been taken off Oxaliplatin or Oxycrappin as Curt calls it and the steroids. I feel much better and I don't feel that gut wrenching sick any more. I was taken off that drug because it causes nerve damage if a person stays on it for too long. I still have nerve damage symptoms and we hope they are not permanent. My feet feel cold and tingle up to my knees and my legs are very week. Standing up is always a big effort and I am a bit shaky for a few seconds. I was hoping that I would have more energy and be able to get up and about a little more. The opposite has been true. I have been sleeping a lot and very soundly. I have never known such fatigue. I am not complaining, I just didn't expect this. I will get a good 9-10 hours at night then within being up 2-3 hours I am fast asleep again, this time for a couple hours or so. By late afternoon I catch a short nap. You would think after this much sleep that I would not sleep well that night. Not so! I will crash and be in bed for 8:30-9:00 ready for 10 more hours. I just think that this is my body's way of dealing with this raging battle that is going on inside and the steroids and Oxycrappin were not allowing my body to go into sleep mode.
The other change is that oncology will only book 1 round of chemo at a time instead of a block of 8. The reason for this is my blood count is now very low and they won't infuse me if my count is too low. This is the other reason I am sleeping so much now. My body is working very hard to reproduce red blood cells. This condition is called Anemia. I am glad to be feeling better but this battle has just moved into another phase. I use my blanket a lot now. We moved the big blue recliner upstairs and brought the little one downstairs. I sleep in the big blue recliner with my blanket alot these days. I just hope I don,t wake up to find seven dwarfs hanging around.