Pump Chemo Complete

 Today's blood work revealed the same results as Monday's - Alkaline Phosphotase was low enough for me to do liver pump chemo. The only difference is that Dr. Kemeny reduced the dose. On November 30th I received 208 mg of Floxuridine. Today I received 52 mg of Floxuridine. The hope is that my liver will respond better to the lower dose and allow for more pump chemo treatments.

The only disappointment is the steroid Decadron (aka Dexamethazone) is included in the cocktail. I have had Decadron in the pump for the last month and I definitely feel it. I always feel a little edgy, I notice myself feeling less patient, and there's a numbness I feel around my teeth. I 'm really hoping that when the pump is refilled in two weeks, that Dr. Kemeny doesn't recommend more Decadron. I'm really over not feeling myself. And I'll do whatever there is to do that will allow for more liver pump infusions.

And yet there is another bonus to the pump chemo which is that I get to wait two more weeks until my next systemic chemo treatment which is a total of three weeks since my last treatment. It's nice to have a little break.

Psyched for Chemo!!!

My liver enzyme counts, specifically Alkaline Phosphotase, have returned to normal levels so I will be receiving liver pump chemotherapy this Wednesday. When my doctor's nurse called me and gave me the good news, I yelled into the phone probably louder than she would have liked. And in the next moment I was teary eyed with joy & relief for the opportunity to receive another direct infusion. It's a strange world when a fella's teary-eyed and cheering because he gets to do chemo!

And in all seriousness, this is why I went with Dr.'s Di'Angelica & Kemeny, because they provide the opportunity to use the Hepatic Arterial Infusion pump which significantly reduces the possibility of a recurrence in the coming five years. I would like it if the time frame for no recurrence was a bit longer than five years, however five years is the window in which doctors work in oncology. Won't it be a wonderful time when 20 years is the reference point or perhaps in this lifetime. And right now this is what we have and it's only getting better.

Getting Through Each Day

It's about 12 hours since my chemotherapy infusion began and I feel 95% nausea-free. Relatively speaking, it's pretty great. Immediately following the infusion I picked the boy up and brought him to an evening Ash Wednesday service. Yesterday he requested we go [BIG SMILE]. I was so glad I could accommodate his request. This is the first Wednesday/Day 1 of an infusion, that I've felt at all like doing anything other than head home. This includes all seventeen infusions I had in 08-09. I'm currently receiving IV Emend and combining it with tablet form Zofran and the results are clearly very good. And earlier this evening, before 7:30 PM, I was 100% nausea free which is tremendous. And as I said in a previous post, I'll be thrilled when I'm provided a 100% effective anti-feel-lousy-and-exhausted-medication. And if I had to choose, I'd take the anti-nausea meds 100x over anything else.

What's also come up is that a lot of folks seem to be under the impression that because my first approach to healing from cancer was Gerson Therapy, that I eat some version that diet or another very restricted healing diet. That's actually not the case. I don't mention this much but the reality is that my priority is to find my way through the circumstances I've been dealing with for the last year. The cancer diagnosis is easy. There's no arguing with it, so there's no point in getting upset about it. Plus, there's no sign of any cancer cells anywhere and I'm in the midst of a highly effective treatment. At least for right now. But what's far more difficult is people. One can get infuriated with people because they have the capacity to change their behavior should they choose to, but when they don't it can be maddening.

Yeah the treatment is tough, but it's these other circumstances I find heart-breaking. That's a big part of what I manage. And I'm clear heart-break and feeling mad are, minimally, not creating healing. And the sooner I let go of the expectation that I can get other people to live with integrity, the sooner I'll be free of of the upset. And for me part of that is to embrace my lack of patience and sometimes anger with others. Resisting such feelings definitely doesn't make things better. And I'm not waiting around for them to disappear. So instead I do what I can to embrace the feelings. It's part of the package until I find the capacity to be another way. I aspire to a great deal, but in the meantime, this is who I am.

And my #1 commitment is being a loving father. So to be 100% present, loving and patient with my boy, as well as minimize the upset I have with other people, and provide myself the space to rest and heal, I work one-on-one with a Life Coach on a weekly basis. I also engage in regular exercise, meditation, prayer, my music, and hypnosis. This "keeps my head above water" - and I simply don't have it in me to take on another thing. I'm totally maxed out with everything I'm dealing with, and part of caring for myself is to allow myself a lot of rest and fun. If I took on a diet transformation, researching how to do it all, doing all the necessary prep work, etc, etc, I wouldn't have to time to be with my boy. And if things don't turn out as I hope, I will have missed the opportunity to be with my child while we are both together on this planet. And if things turn out well, then all is well. I genuinely believe that my spiritual path is what is providing me healing and what has people look at me and tell me how healthy I appear.

What I do is eat very well. Fresh, organic well-balanced food. And lately I have had a craving for fruit far beyond the norm for me. Kiwis (a powerful food for the liver), grapefruit with raw honey - LOVE IT, apples, and oranges. I am devouring the stuff and just can't get enough of it all. I'm also supplementing my diet with a Gerson Therapy Green Juice as well. Green Juice is another excellent food for the liver. So that's the scoop with food. And I look forward to when things are different and I have the capacity to go beyond where I am right now.

Clarification

I feel compelled to mention that in my February 12th post my intention in sharing about the cold sensitivity was to give you an insiders view of what Oxoliplatin can be like. I'm happy to put gloves or a hat or wool socks & my winter boots, and the sensations will go away for the most part. I just thought it was a trip to have such weird side-effects and thought you might find them as peculiar as I do. As far a real problems with side-effects go, I met a fella whose entire body trembles from his chemotherapy side-effects. The guy just wants a break. And he doesn't get one. Me? I just have whacky "pins & needles" and a frozen face now and again. My big hurdle was putting on my neck/face warmer so the boy and I could zoom around the ice rink together.

The Other Crazy Side-Effects

I've been meaning to expand upon the side-effects of the chemotherapy treatment. In addition to the nausea, fatigue, and feeling painfully hungover, there are also some less known and peculiar side-effects. The craziest one is the cold sensitivity I experience, as a result of the Oxaliplatin. Whenever I leave the hospital after the infusion and the weather is cold, my skin is painfully sensitive to the air. Any time the temperature is below freezing, the wind blowing on my face, it feels like I'm walking head on into a freezing rain storm or more specifically, as if I'm been walking into a freezing rain storm for a few minutes and my face begins to get numb; my hands & feet feel like I have piercing "pins and needles," the sides of my eye lids (furthest from my nose) tighten to the point that they're nearly closed, the inside of my nose gets "pins & needles;" and should I inhale through my mouth, my throat feels like I have ice sitting in it.

And as far as being inside, I have a pair of fleece gloves on top of the refrigerator so I can remove what I need from the fridge and freezer without getting "pins and needles" in my fingers or at least without getting it as bad as I would were they not protecting my fingers from direct contact with the cold. When I wash fruit or vegetables, I have to then run hot water over my fingers to end the "pins & needles" sensation from the the cold water I rinse the produce with. And of course I also have to immediately dry my hands after warming them with the hot water or else once they cool off, the dampness cools my hands to the point that they get "pins & needles" again. Juice from fruit running onto my fingers will cause it. Handling tons of greens while making Green Juice, an absolute must, will cause it. And usually when I get out of bed in the morning and walk into the living room to turn up the heat as we begin our day, my fingers feel it just from the cold air. I also can't drink anything cold or even slightly less than room temperature because such things cause my throat to feel as if something is stuck in the back of it.

I have lots of wool socks, a pair of down-filled mittens, a fleece neck warmer I can pull up over my face, and I have those little hand-&-glove warmers in my glove box and coat pockets, should I find myself in the cold with no heat source. You know. Should the car break down in the cold weather, I am not interested in the temporary loss of use of my hands or feet because of my chemo cold sensitivity!

Oddly, my hands also cramp for the first few days following treatment as a result of the Oxaliplatin. After the first few treatments, the cramping was happening quite frequently. I would open a jar of something or play my guitar or be playing with Legos with my boy, and my fingers would just cramp up until I kind of worked them back into a normal position again. My nurses that do my systemic treatments here at Cayuga Medical Center, said they would slow down the infusion from two hours to four hours. I suggested that perhaps they just couldn't get enough of me and were doing whatever it took to keep me there longer. However I could be mistaken...considering that lengthening the infusion made a huge difference and minimized the cramping compared to my previous treatments. Oh well...

On a good note, the sessions I recorded with the brilliant hynotherapist I've been working with have had a deeply positive impact on my state of mind while I experience the worst of the chemo side-effects. As I mentioned in the January 25th post, when the side-effects are at their worst, my mental attitude and sense of hope is at it's worst. So when the chemo already has me "behind the eight-ball" and then I find myself feeling angry or disappointed with another person, I sometimes go down a road where upset leads the way and gratitude for life has vanished. And we all know anger does not heal a thing. And if anything, it's food for disease. So, when I find myself feeling that way, I lay down, put on my headphones, and listen to one of the hypnotherapy sessions. They're amazingly powerful. I let go of my expectations of others and return to peacefulness and gratitude for my life. My coach tells me that her work with burn victims provided her the opportunity to observe how hypnotherapy retrained the mind's of her patients, much as I am doing for myself, and created a quicker return to a positive and hopeful attitude about their health and future. That combined with daily meditation has been a powerful source of wellness for me. I have much to be grateful for.

Treatment #5

On Wednesday February 8th I went in for my fifth systemic chemotherapy treatment. This time the anti-nausea pre-med was intravenous Emend and it was 100% effective. In the past, I have taken Emend in pill form over a 3-day period with a nausea-free effectiveness of about 90%. This time I was 100% nausea free all day Wednesday, Thursday and until 3PM on Friday. The nausea started at 3PM because that's when I was on my way to have the portable chemo pump unhooked from my port. Each time I've gone to get the pump unhooked, I've found myself miserably nauseous.

I have never been 100% nausea free while doing chemotherapy. I had no idea it as even possible. It's great to have a completely effective anti-nausea med. Now if I can just find an effective anti-feeling-poisoned med to deal with the rest of the side-effects I'll be in great shape!

I believe what had me feel nauseous on Friday afternoon was an anticipatory nausea I experience prior to the start of a treatment or prior the removal of the pump on the third day. I was prescribed Ativan to manage it. It reduces the anxiety so the nausea doesn't start. But unfortunately, once I opened the cupboard to take one, I forgot why I was in there (chemo-brain) and never took it. And once the nausea started, it stuck around for a while. However, it was relatively tolerable, so we did some vocal recordings on a song here at the house until about 10 PM when I decided to go to bed.

By 11 PM I started to experience abdominal pain. Inside my abdomen I felt a sharp pain and burning. It was a pain level of about four out of ten. Once it got to a six out of ten, I took a couple anti-acids. They didn't work and the pain increased to an eight out of ten. So in a last ditch effort, I took some Pepto in hopes of "putting the fire out." Well, within a minute I was bent over the toilet bowl while my body rejected every last bit of the stuff. At that point I called my oncologists office and got into communication with Dr. Bael, the doctor on call. He recommended the Emergency Room for bloodwork and pain relief, and my housemate gave me a ride. Within an hour of being at the hospital, I was on a bed receiving intravenous Dilaudid for the abdominal pain. Blood work was done and the only thing that stood out was my very high white blood cell count which was a result of the Neulasta shot.

The pain from the Neulasta has been brutal for the last four treatments. Yet during my latest meeting with Dr, Kemeney, she mentioned that my white blood cell counts have remained high and perhaps I didn't need the Neualasta shot and could instead go with Neuprogen. The nursing staff at CMC explained that Neuprogen was five shots over five days and perhaps I might prefer to simply do a half shot of the Neulasta (three milligrams instead of six). I went for the half shot and so far it's been a night and day difference. No need for narcotic pain killers to deal with the Neulasta. Instead I have just a little facial pain and some light soreness in my arms and thighs. What a relief.

This morning, I was seen by Dr. Bael. Since the bloodwork from the Emergency Room revealed nothing other than a high white blood cell count, and no liver or pancreas issues that could have caused the pain, Dr. Bael suggested the pain may have been spasming, in response to the chemotherapy. So as a precaution, he wrote me a prescription for Percocet should the pain return today or anytime following future chemotherapy treatments.

Other than having to stand in line in the Emergency Room doubled over over in pain, I'm happy about treatment I received. I felt cared for by the staff which makes a huge difference.

Still No Pump Chemo

I went to Sloan Kettering to see Dr. Kemeny on Wednesday. About halfway there we took and wrong turn and took a ride I don't regret along the Hudson River. It was beautiful.

My CT scan came back negative. That was great news. However my bloodwork again revealed the Alkaline Phosphotase enzyme was again too high - not as high as before but still to high - so I was not eligible for a liver pump chemo infusion. I asked Dr. Kemeny what could be done and she said she would be willing to add the steroid Decadron to the saline and Heparin that solution going into the pump in lieu of chemo. She said the steroid often reduces the enzyme counts and the only real side-effect to be concerned about is a lack of sleep. I told her that considering the liver pump is what's providing me the best odds of no recurrence, a little lack of sleep is hardly an issue. I'd tolerate far more than that in order to be eligible for the pump chemo. The pump chemo combined with the systemic chemo raises the odds of no recurrence from 60-70% to 80-90%. I'll do whatever it takes.

Dr. Kemeny also mentioned the CT scan revealed what appeared to be inflammation in my intestine and she asked if I was experiencing abdominal oain, swelling, diarrhea, etc. I told her I have experienced none of the issues she asked about and she said the appearance of inflammation could very well have been a result of the contrast I drank and also had injected intravenously for the CT. I hope so. Symptoms of Colitis was one of the concerns she had. And given the option, I'll pass on that.


Each time I have a trip to NY scheduled one of my regular passing thoughts is that I can go by myself. Then within a few minutes I start laughing at the absurdity of such a thought and I make a call or two to my friends who are already on board to join me for the trip when needed. I am currently way too fatigued from the chemo treatments to drive the four hours each way, should I do it in one day or two. And this leads into my overall need to care for myself. It's amazing how much resistance that occurs in my thinking. From an early age I was impacted by the culture of the USA - to be independent of the help of others. That may not be very apparent considering I've reached out for the support of my friends and community, but the reality is that it has taken me a great deal of personal growth to be able to ask so directly for support. I'd be willing to live in seriously undesirable circumstances, but I won't have it for my little boy. He will always have a good life as long as I'm around to have any say about it.

And amazingly, I was at the Tompkins County Department of Social Services a couple of weeks ago and I was told my disability income was too high to receive much in the way of anything from them. Perhaps I might receive a few dollars for food each month. To which I responded, "So is DSS support essentially for people who are so down and out that there going to be on the street if they don't get help?" The answer, "Essentially, yes." I guess it's good the poorest of the poor have an agency specifically aimed toward their specific needs.

So caring for myself has been very humbling. Asking for support for starters. And also just resting instead of keeping up on my to-do list or even being social. It's taken a lot of letting go of how I believe a man & father should live and instead do what I've got to do to be as healthy as possible. This whole process - surgery, recovery, chemotherapy - it's all feels very demasculinizing. I'm sure I touched on this the first time I was diagnosed. Yet the thought still shows up today. Granted the experience of demasculinization is a cultural creation. It's not real like gravity or mortality, but it can feel very real and had it gone undistinguished by me, it would have the controls regarding my daily decisions. But instead I keep an eye out for it, notice when it's invaded my thinking, and quickly presence myself to the reality that after caring for my boy, caring for myself emotionally and physically as I undergo chemotherapy is of the highest priority. And, succumbing to the desire to not feel emasculinized isn't always a bad thing. It's just not very useful in my case right now.

And gratitude is another powerful place to stand. My father-in-law sometimes reminds me of the huge privilege it is that we live in a country where the needed necessary medical treatments are available to us. It is indeed something to be grateful for.