Category Archives: nutrition

Not Years

Hey its time for an update. you’ll have to forgive my misspellings ad other errors as i have some nasty papercut-like slices across 4 out of 5 fingers on my left (good) hand. so this might need to be a bit brief.

I’m feeling the effects of all this poison now, after for back to back chemo sessions again. Almost had more today but need a 4th week to get more energy back. I’m just not the spritely 45-year-old who could bounce back from it. I’m starting to get sick of this dirty dishwater and it’s starting to show. It’s to the point  where I’m not bouncing back like I used to…

So I’m now on short term disability. I just can’t be counted on to hold down any consistent hours, mornings take a long time to get up and get ready for the day, sometimes i’ll be so pooped and if i didn’t get enough sleep the night before, i’m going back to bed. wake me up for lunch please.

It used to be that I had a full-time job and I manage my cancer on the side; now those roles have reversed. I have to do so much maintenance on myself — especially in the mornings — that by the time I get ready to go to work it’s almost noon. So it’s like I have a part-time job along with my full-time cancer.

2 weeks ago I went to go see my oncologist and we talked about… well, frankly, the usual progression of my specific cancer, what I will heretoafter be calling the ‘endgame’… at one point I straight up asked him, “based on what you’ve seen in other cases and compare them against mine, how long are we talking?“

“Not years.“

I didn’t push the questioning any further than that. Seeing as how I was feeling 2 weeks after chemo I can understand where he’s coming from. There will come a time where I can’t stand the chemo anymore and it makes me question why exactly am i suffering like this? Or the chemo just plain won’t work on my tumors anymore… at that point, I’ll have to make that decision to stop treatment and start trying to heal as best I can on my own and fight this stupid thing with the gloves off and see how far it takes us. Until then I’m looking forward to bringing this question up again to him next Halloween.

In related news, I also got (yet another) CT scan on Monday to gauge progress, which we went over today. I’m copying/pasting this stuff as my fingers are goin south on me

Findings:
Chest:
The thyroid gland is unremarkable. Right chest wall port tip within the right atrium. No axillary adenopathy. Normal caliber thoracic aorta. No pericardial effusion. Coronary artery calcifications. Pulmonary arteries are unremarkable.No intrathoracic adenopathy.No pneumothorax. No pleural effusion. Left basilar volume loss. No focal consolidation or suspicious pulmonary nodule.Abdomen and pelvis:
Redemonstrated areas of heterogeneous low-attenuation throughout the liver, reflecting sequela of prior embolization. The previously described caudate lesion currently measures 1.4 x 0.5 cm series 2 image 105, previously 1.5 x 1.2 cm. The low-attenuation lesion in the left hepatic lobe measures approximately 1.2 x 1.8 cm series 2 image 100, previously 3.3 x 2.7 cm. No new hepatic lesion. Nodular liver contour with splenic and esophageal varices.

Suspected cholecystectomy clips. Mild splenomegaly. The pancreas and adrenal glands are unremarkable.

Symmetric renal parenchymal enhancement. No hydronephrosis or urolithiasis. The bladder is decompressed. Prostatic calcifications noted.

Scattered colonic diverticula without focal inflammatory change. The known colonic mass is not well identified by CT. Normal appendix. Right lower quadrant percutaneous drainage catheter tip terminating within the left lower pelvis.

Large volume ascites. No adenopathy. No free air.

No aggressive osseous lesion. No acute fracture.

Impression:

1. Improved hepatic metastatic disease.
2. Resolved enterocolitis.
3. Cirrhotic liver morphology with findings of portal hypertension, including large volume ascites.

About as good a scan as i could hope for, though the coronary artery calcification is not good — watch heart disease take me before the cancer does. I’ll admit, i’ve finally been following everyone’s suggestion to eat what i want, especially when my arm muscles have turned into chicken wings. I’ve been on a quest to replicate a long-gone favorite of mine from Taco Bell,  the chilito. I might have to make that recipe the guy has there…

Obviously the chemo is still working. Its just the side-effects i can do without. but i have 1 more week before i get more chemo — and after that scan on Monday, i might just get back up on that horse. i will not relent. i am driven.

And thank you for the continued support. the love i feel coming from all directions, it’s overwhelming sometimes… i can sense the energy from you and it keeps me going. I love you all.

Mom and Billy, my Soul Brother #1, thanks for the visit, it was just what i needed.

i need to get up and walk more…

The Dance Begins Again

Got my baseline CT scan yesterday and went over the results with my oncologist today. Basically the effects of not being on chemo since late May has resulted in some tumor growback, as well as swollen lymph nodes. It’s hard to imagine it’s been 5 months since chemo, since over half that time was spent trying to heal from the effects of all the radiation therapy I put myself through over the summer. Unfortunately that 5-month break allowed the tumors an opportunity to grow a little.

This isn’t surprising to me anymore; I’ve come to the realization I may never get rid of this cancer. Generally the best way to be cured of cancer is to cut the cancer out of the body, and if I keep getting shut down over the possibility of being operated on, then obviously an alternate method needs to be discovered. Chemo won’t kill cancer outright, something else needs to eliminate it.

So if I’m not ever going to be operated on, then I’m looking at a chronic case which will constantly need some strength of chemo to keep the tumors at bay. And then it’s a matter of playing for time – until someone discovers a cure, or I run out of insurance to pay for chemo. I’m not being negative, I’m just seeing the reality of the situation for what it is. Of course my attitude continues to be to fight this until it’s gone, I just can’t be disappointed if it doesn’t go away on its own, which is a long shot statistically.

Part of the issue with the radiation therapy I had, was dealing with a sour stomach and the lack of appetite that goes along with it – I entered sort of a negative feedback loop with not being able to eat consistently and I dropped a bunch of weight. I didn’t feel like cooking for several weeks, Christine had to step in and make dinner while I stared numbly from a couch. Got all the way down to 180 lbs, which is a little gaunt for me. I can’t remember the last time I weighed that much – some time in high school probably. So finally my oncologist put me on some medication to stimulate my appetite and told me I should eat anything I wanted in the short term, while I get my weight up. Now, I’m a good 10 lbs heavier and hungry all the time, I need to stop taking that medication before I start going after the kids’ Halloween candy.

Having to deal with this much discomfort while I was trying to recuperate after my Theraspheres insertions sort of put me at a disconnect with myself and others; I’ve not been in the best moods and have been keeping a low profile while I’ve waited and wondered whether this pain is my new normal. I’m happy to say that it isn’t, I feel better than I have since July, and I’m mentally getting back on track. More chemo is looming – I have an infusion scheduled for the 14th – but at least I know how that affects me and how my body reacts to some of it. It’s definitely the lesser of the 2 evils for me.

Thanks to all who keep sending me positive energy, you’re propping me up here. Also many thanks to those who nourished me and my family with dinners while I was indisposed, it meant so much to not have to worry about what to cook. And the apple pies from Cassie, my mother-in-law, could revive me from a coma. Or, if I ate enough, put me into one.

Okay I need to snack again. Onwards and upwards! I’m getting up and brushing myself off, the fight still continues! I love you, thank you for still being here with me. I need to figure out a way to finish off this cancer, without being operated on…

State of dominance

So I’ve had a couple of ‘maintenance appointments’ since my radioembolization finished: another checkup with my primary physician and my annual follow-up colonoscopy. Tests from my physical came back mostly normal with the exception of my alkaline phosphatase levels being abnormally elevated. I’d usually be concerned about the high levels, but then again there IS something wrong with my liver so I’m not that bent out of shape about it.

And my colonoscopy last week went well: no new polyps to remove, and the tumor that started this all has shrunk 20% and is a lot less angry-looking than when we first discovered it. All this shrinkage and without chemo for the last 7 months… not bad. My proctologist has recommended a surgeon to investigate the possibility of removing the stuff in my colon soon; now would be a perfect time to explore this option before I see my oncologist again and potentially have to be put back on chemotherapy. If I can get the tumor in the colon removed, then the source of the cancer will be eliminated and this becomes a battle fought only in my liver.

My doctor recommended I read Radical Remissions and I pulled a lot of insight from it; most notably the concept of changing the environment to affect the disease. The author likens having cancer to having mold in your basement: if a doctor discovers cancer when operating on someone, the first (and usually only) line of defense is to attack the cancer outright and try to eradicate it from the body with chemo or radiation therapy, much like one uses bleach to get rid of mold in a basement. But if the environment hasn’t changed then there’s an outstanding chance that the mold (or cancer) will come back, because the environment is mold- (or cancer-) friendly. So additional work is required to change the environment: as one would use a dehumidifier in a basement to make it less hospitable for mold growth, my task is to adjust my body chemistry so it helps my own immune system fight the cancer from within, and will continue to fight it like other healthy people do.

To that end, I’ve been adding more supplements to my daily diet, and am working towards eating better. Most of you know I cook the majority of the dinners for my family so this part is a little more of a challenge for me, as I’d be putting myself on a culinary island if I strictly stuck to the guidelines suggested (i.e., no meat, no dairy, no pasta or breads, no sweets, etc). I’m not willing to put my 2 teenage children through this, as they require a much different diet than I do. But I’m working on it slowly, making small changes that are less temporary and more apt to be assimilated into my cooking habits. I’m introducing at least one meatless dinner a week, trying to add more tasty recipes as I find them.

One of the 9 factors highlighted in the book discusses increasing positive emotions, which I felt I had nailed but realized I had been shooting a lot of negativity directly at my illness. I’m quickly finding that this activity is not helping me overall – I can’t consider myself a positive person if I’m being negative towards an unwanted part of myself. Plus, it’s exhausting to keep up such negativity when I’m not used to it. So I’m changing my attitude to one of love – not hate – towards my cancer. Letting go while continuing to control and modify my environment, and trusting my own cancer killer cells to do their job. The goal hasn’t changed, just my ideas on how I get there. I’m sure they could change again at some point. I still have a lot of work to do, and if I’m not satisfied with how my next CT scan looks in early January, I know what I need to do to improve things.

Thanks as always for being here with me. I’m addicted to the energy I get through well wishes and prayers, and it keeps me well. Please to enjoy some Stereolab! I love the pace of this song, great to walk to.

When two people have a project
They begin a competition
In which there will be a winner and a loser
State of dominance over one or the other
This dominance is integral
To all human’s ways and actions
The necessity to keep at disposition
An object or being desired by another
Knowing through training that if he wants to keep it
Learning everyday, he will have to dominate

Our brain makes us act
Behave and react
Compulsion that drives us to stay alive
Need to satisfy our fundamental needs
The nervous system enables that drive
Through consumerism, escape and struggle
As well as inhibition
All these mechanisms that preserve balance
Biological well being
Seems that until now we have used our brain
Just to dominate, just to dominate

Knowing through training that if he wants to keep it
Learning everyday, he will have to dominate
When two people have a project
They begin a competition

We’ve to widen the knowledge of
How our brain works to understand
Or nothing will, will ever change
With to what end, to end right now

Give birth without seizing
Act and expect nothing
They flower let them free
Unite with the dust and be.

Chemo and food

chad-n-meSecond round done. Had my father-in-law over to keep me company, thanks Chad!

If you listen to the hospital, there’s not a lot of control with what you feel you can do to alter your treatments – they give you chemo, you try to eat what you can and that’s it. But I’ve seen some articles (thanks Dave) that address the other logical half of this treatment: nutrition. And that’s a significant part that is definitely under our control and is not really addressed when I go in to get the medicine part of this treatment.

I mean, look at what they gave me: a puny sandwich, no lettuce or tomatoes, a bag of chips and any soft drink i wanted (Chad brought in the pickle spear, the only vegetable seen in the place). Where’s the whole fruits or vegetables? I feel like they’re sending the wrong message to patients when they say they just want you to eat what you like in the name of sufficient nourishment. Perhaps they have to because they haven’t done enough studies, or they don’t want to recommend a diet that would be incompatible with more sensitive patients (e.g., lactose-intolerant, gluten-free, etc) in the fear that they’ll get slapped with lawsuits. It’s just a shame more attention isn’t paid to this half of the treatment equation.

I read an article about how denying nourishment worked on reducing cancer in mice, so I did the same — I fasted for about 34 hours before I had breakfast this morning. I had a dull headache all day yesterday and generally felt crappy, as you do when you don’t eat for a day and a half. I fasted partly because that article makes sense to me, but also because it gives me some sort of perceived control over the cancer. And that gives me the most strength of anything, to feel like I can participate in actively determining how my body will react to treatment. Whether it will make a difference remains to be seen. I will say that my CBC / CMP numbers are holding steady (with the exception of my white blood cell count which is expected), and my CEA is on a downward trend.

While I didn’t see any cookies out, this article also gave me pause, as I like a bit of coffee with my sugar. Maybe this is only about breast cancer specifically, but it seems like I should definitely consider cutting sugar out of my diet for now. Another self-imposed restriction is cutting back on drinking homebrew to maybe 3-4 pints a week, and I’ve dropped 10 lbs in the last 2 weeks. So there’s a silver lining in all of this, where I can work on keeping some of these habits when I’m done with surgery and chemo, which should be somewhere in February. Thanks, all of you, for your sustained thoughts, prayers and energy.