Buh-Bye Chemo Port

Isn’t it time to bid that chemo port buh-bye?

It’s just over two years since ending the chemo regimen from the liver cancer metastasis. Today I am alive and thriving!

 

It wasn’t all easy, those two years. It’s amazing because one would think that finishing chemo would mean life can go back to normal, a healthy and productive life, free of disease, medications, doctor appointments, worry and fear, just like that. Well, on the surface I have those things now, more or less. I do see the doctor less, I am in better shape than I’ve been in years, there is a more predictable schedule and fewer emergencies than while treatments were ongoing.

Still, because of the “cancer club membership” I now have, I am married to the medical system. I’m dependent on doctors, on healthcare, and on insurance. Of course I am getting older… so there’s that, too, but before cancer I was an easy patient and pretty smug about it. I liked that I could see my doctor once per year or less! I liked the bod being solid and reliable. Now if I go more than two months without seeing a doctor, I feel insecure and usually have saved up a million concerns to discuss overwhelming the appointment.

That’s life in the fast lane! But I’ll take it. Gratefully.

 

As for having more time to myself:

Yeah, I have that too, but jeez, something happened since cancer: a rather extensive daily routine of taking care of myself! I credit graduation from cancer for starting some really good habits, like:

  • Spending 10 minutes on my teeth every night because my gums have receded so much, I’m just trying to keep my teeth! I have dental cleanings quarterly.
  • I exercise twice a day, and I like that, but I also feel obligated to stay strong to combat bone loss from the radiation and chemo. Incidentally, the osteoporosis diagnosis a year and a half ago (thinning bones) has been downgraded to osteopenia (less critical), I believe from a combination of supplements and exercise. Thank goodness my bones are rebuilding themselves as I was told they may not.
  • I have supplements to take at various times of the day.
  • I make a daily concoction of juices to cleanse my liver of all the supplements residues.
  • Clean my glasses, which recently became necessary.
  • I cook all meals and they are nutrition that Matt and I need specifically.
  • Then paying, scanning, and filing the medical bills for financial fitness as well.

That makes a full day just spent on myself!

 

Longer term:

There are maintenance blood tests, colonoscopies, and scans (oh my!). The results have been mostly routine, but each, more than ever, are followed by a period of nervous introspection. A nagging fear that the test will not come out normal, and I will have to start over again; breaking the news of a whole new diagnosis to my family and community, interviewing doctors, filling out health questionnaires, filling my schedule with doctors, therapies, new uncertainties, waiting for never-ending test results, and worrying about insurance eligibility! My imagination takes over and goes to the worst places. This never happened before my second occurrence of cancer, but darn it if the second occurrence has really changed my view of mortality.

i-have-this-nagging-feeling_LRG

Fighting cancer ages people. Not only the bone deterioration, receding gums, spiraling hormones, it also makes you look older. I think I’ve aged visibly and maybe look 14 years older than I did 3-4 years ago, which puts me in the same era as my husband! While I generally applaud age and the success of achieving a “ripe old age”, I’m mixed about it happening rapidly and unnaturally from medical treatments. Ok, so the new lines in my face are battle scars. They are for the naturally aging people, too, but I’m not used to seeing them on my face when 3-4 years ago I looked much younger. Also, age is a state of mind. True, and I feel older in the sense that I am wiser, I have more boundaries than I used to, and maybe a little more cynical. But the things that I love, I love so much more, have so much more sincere gratitude for kind acts, friendships, noticing the colors and relationships in the world around me.

Although emergencies haven’t entirely stopped, they are fewer and less consequential. I had a surprise root canal a few days ago. That was a first, and there will be more firsts, but at least I know that whatever it is, it will be an easy fix! I believe that given time my anxiety will decrease, I won’t even remember this worrisome era.

 

Finally, yesterday I had my chemo port removed!

It was a rather short, uneventful procedure in-office, rather than in the hospital. I could have chosen the hospital where they would put me under, but it really is a simple procedure in the clinic, cheaper, takes a fraction of the time, and I didn’t have to trouble anyone to drive me.

Power.Port.patient.shoulderPower.Port.diagram

Some people keep their port in long after the disease is gone. I guess ports can stay in indefinitely, and people may go four years, five years, nine years before taking them out. I never intended to keep it in for two years, but I just never had time to get it removed, and one more surgical procedure was just unappealing. My blood cancer level did jump a bit, and for a month I played it really conservative with diet, supplements and rest. That did the trick, because the levels fell again on their own.

I’ve got this. It’s time. I am ready to be free of the port. I no longer need to harbor the symbol that connects me to the disease I beat twice. Onward!

 

Buh-buy chemo port!

COLONOSCOPY – POLYP GARDEN

Fresh from the colonoscopy 2 weeks ago, I received results: two polyps… 

Benign adenomas, precancerous, come back in a year… *Sigh*…

It was disappointing learning of the polyps since it has been only one year since the last colonoscopy and my results were clean then, so I was hoping for a repeat of that. But instead two tiny polyps still sounded alright, I could live with that. They would be biopsied and results would arrive in a few days. So my results today showed the polyps were “benign adenomas”, or precancerous polyps. That is not good, and what the heck does “precancerous polyp” mean anyway?

Polyp Phases

Phases of a polyp

polyp-phases-2

I’m guessing mine was at “severe dysplasia” stage, as it was benign, yet still precancerous.

 

 

 

 

 

 

Everything I’ve read about adenomas is that it will take between 2-10 years for one to develop into cancer. For a polyp to form and become precancerous within one year tells me that my polyps were under unusual conditions to become precancerous so early. This year has been unusually stressful, and unfortunately I have an unusually poor way of handling stress, ie. I hold it in. I convince myself it could be worse, I can handle it. This explains my “polyp garden” colon and why my resistance to growing these little guys is so low. This also explains why for survivors of colon cancer we have to stay on top of our maintenance exams (scans, colonoscopies, blood tests). I need to stay on top of my tests, I need to manage stress better. I’ve been doing the former exceedingly well, yet there’s more progress to be done on the latter.

In May 2016 my oncologist noted on my CT scan results a spot in my liver that he wanted to watch, and told me to have another scan done in three months. No worries, I thought, it’s too soon after chemo treatments, it must be something else. I did not worry. During the summer we started a new business, had Matt’s daughter and her fiancé move in with us, we had a series of financial difficulties and some personal issues come up all at once. I began losing sleep and obsessing over order in my house, an effort to keep some sort of control over a huge period of change. I (all of us) began feeling overwhelmed and out of control. We all worked from the moment we woke to bedtime every day for months straight with no breaks just to keep ahead of bills. I was on top of everything, I felt I was handling it, but was exhausted all the time. It was a miserable, stressful time for me and my family, and I began to worry about my health. I’d had a tickle in my chest for months. Thinking back about what my oncologist said about the spot in my liver, I could not let go of the fear that cancer had come back and settled in my lungs and my liver. I had no money to get the follow-up scan, and decided it would not hurt to put it off for a month or two until we could figure out our finances.

The fear overwhelmed me and I believed I was sick again. I worried for Matt, my parents, my friends, I dreaded telling them I was going to die. I worried about going through all of the diagnosis, treatments, months of uncertainty and sickness again. If this disease could come back so quickly twice, it must want me; I must be doomed. Things got extremely desperate and I could not shake the fear of not knowing. So I scheduled the scan and results came back clear.

I celebrated the good news, as did everyone around me. I had not made my concerns public, but my family knew. And yet the fear came back. The tickle in my lungs was still there, and I began to wonder how much of my chest the CT scan covered? I had not had a blood test in a while, and realized it was time. I was only a week or so off my schedule, so I scheduled the blood test and met with my oncologist. The blood test came back clear, the oncologist hypothesized that the tickle was coming from a new allergy. Again I felt better, but there was still an insecurity in my mind. No spots in my liver, no sign of disease in my blood,… the colonoscopy should turn out healthy too, right? With all the stress over the summer, what would it take for the cancer to come back? Where would it? After the first occurrence of cancer in 2012, it was only 2 1/2 years until the second occurrence in 2014. It has been about that long again, and I was inconsolably worried.

The colon prep this time around was miserable because I had a cold, too. Ugh… no fun. Coming off of the anesthetic the first thing the GI said to me was he found two small polyps. He did not think they would be problematic, but they would be biopsied all the same. The fact that the results came back precancerous is a red flag that I am not doing enough to manage stress.

The moral of the story is, I’m glad that I am being so closely monitored, that I have great health insurance (thank you Obamacare), I’m glad that at this stage the polyps could be removed with no incident. I am safe again, for now, thank goodness. I will continue practicing stress management, continue getting enough rest, exercise, good nutrition, laughter, and

I will continue with my maintenance exams.

polyp_colonoscopy

How polyps are removed, a retractable wire loop severs the neck of the polyp.

polyp_colonoscopy

Little bastard

THE TEMPEST

We all experienced a mix of rain and sun here in Portland, Oregon, but my rain was a tempest of illnesses that hit all at once.

Well, I guess I get my comeuppance for having so many “good days” during this cancer process. Why? Because of the phenomenal weather this year and last, and the “feel good” days, as though I’m a thief making off with gold since the diagnosis of metastatic liver cancer last August.

Because I am immunodeficient following three very successful chemo treatments and resulting low red and white blood counts, it should not be surprising, yet is very discouraging, to have contracted three new illnesses at the same time. Each comes with its own misery, and altogether it overwhelms my usual optimism. I’ve earned pouting rights. So, let’s get to it!

Which came first? The sinus infection or shingles?

They both began around the same time two weeks ago. The sinus infection is very painful in the part right behind my forehead. Because, Dear Reader, you and I know each other pretty well, I will tell you this: The shingles is ghastly. I look like my butt is molding.

Peripheral Neuropathy

Velcro-lined slippers

Velcro-lined slippers

I’ve had neuropathy for a long time now, and is positively making my feet puffy, numb and hypersensitive. It’s like wearing nice, cushy slippers lined with Velcro.

Did you get your flu shot?

Finally, a pretty violent flu took over all else with all classic flu symptoms, but intensified by the other ailments. I don’t get flu shots unless I need ’em. ‘Cause if I don’t my immunodeficient butt get spanked with the flu. There were lots of muscle spasms and pain, twitches, tremors, chills, dizziness, projectile vomiting and foggy brain.

I want to complain so badly (and I have), but really, what can you do?

medication-supplements

Taking the nighttime regimen.
Photograph courtesy Matt

Whine and moan! As soon as you realize you are getting sick, you can’t just halt life and choose a different direction to avoid the illness, you can only sit and wait for the sick train to move in and then submit to it. Medicate? Well, yes, there are remedies, or at least relief meds that will take the misery down a notch or two, such as a flu shot, oh, wait, that didn’t really work for ANYBODY this year. In normal health, I refuse medications and supplements. Boy have I succumbed to that rap! Everyone who gets sick has to go through it, fully.

I am pretty good at taking care of my sick body, even before cancer. I have a knack for it. Because I believe the body’s immunity is really pretty amazing, I believe in supporting it every day. Thus, I’ve studied nutrition and fitness for years out of interest. Not that it gives me any real advantages because even if I follow a pretty strict health protocol, I still have to go through any illness I do get, fully.

The good news: I’m no longer at death’s door. Friday I was more vertical. Today, Saturday, I feel in good humor and know the worst is behind me. The neuropathy is getting better. When I couldn’t keep anything down for three days, I had to stop all meds, including anti-neuropathy supplements for a while. Even ginger beer, a known nausea remedy, failed me. I was malnourished and dehydrated – perfect conditions for an illness to go from zero to sixty in no time flat. I got up to over 103 degree temp, now down to… what? 93 degrees F? Ugh, really? Am I dead? I’m the last to know, always!! HA! Let’s try that again… That’s better. 98.2, more normal.

The sinus infection was really silent, but at its worst I had a headache of shooting pains which refused to submit to all pain relievers I could tolerate taking, for 3 days. I don’t know what migraines are like, I’ve never had one. That’s how I imagine them to feel, but do not want to offend any chronic migraine sufferers. No sleep and debilitating pain with no control. Kind of like that? I don’t know. Can I amputate my head? Please?

Shingles, I’m getting test results back early next week, but treating them now, started as a sore, painful spot on my nether regions, then spread up to my gluteus maximus, now is making it’s way toward my brain!! Not really, but spots are appearing on my back, neck and arm, all on the left side. And the welts are swollen and massively sore because I sit on them!! Can I get a butt transplant?!

boneless_chicken_ranch

I was NOT IN A GOOD MOOD, as my husband will attest! I laid in bed like a boneless chicken. Matt felt so helpless, as did I, but I was just too miserable to care about anything!

I know this is a very self-indulgent post, and I’m sorry for that. I don’t ever complain, so I am taking the stage. I guess I had to celebrate this occasion with a long rant. Since yesterday I am feeling so much better. I’m quite fatigued, and possibly contagious, so I’m going back to my nest for a few more days.

So I will close with a little entertainment: The Eurythmics’ “Here Comes The Rain Again”. It’s such a timeless song, and Annie Lennox is my muse.

Banishing the Tempest! Yay for recuperation!!

COMPLEMENTARY MEDICINE, HEALING HABITS: Week 3

Complementary medicine and other healing habits I get to try…

complimentary-medicine

The healing power of food

It’s been about three weeks since beginning chemo treatments for this liver metastases I’ve got, and nearly two months since diagnosis. The first two treatments were NOT SEXY. I did not tolerate them so well. Even with making extreme efforts to help each treatment go better, I have not seen any improvements.

It’s the nausea I’m most concerned with. The first two days of a treatment are fine, then when the chemo pump comes off is when the nausea sets in. Then I don’t want to eat or drink, which causes the side effects to be even worse. To start, I began with two prescription anti-nausea meds, plus one that was infused along with the chemo. Then I was prescribed another, I bought two herbal anti-nausea tinctures, fresh ginger, ginger tea and candied ginger. Plus I had the medicinal marijuana oil and vaporizer pen. If any of those don’t work, than the others will, right? None of it seems to work on those nausea days, so then I must wait to be productive until the chemo has settled out of my system.

Starting out, I found it extraordinarily difficult to keep a medication list because it was continually going out of date faster than I could print them out, yet it has been helpful. New symptoms, new supplements, new medications, more symptoms, medications to counteract the symptoms, etc, get it? I surrender! You know when you go to a new doctor office, you fill out patient intake paperwork, which includes a medical history, a list of current medications, etc. My medication list was just too long, so I’ve typed and printed a list of my prescription meds, supplements, how and when I take them, what dose, strength and duration. Now this handy list I print and give to the doctor will help determine which medications will conflict with which.

Also, I was getting stuffed full of pills each day, and how am I to know the ones need, which ones are working? My complimentary care oncologist went over the whole list and marked the ones I could leave out of the regimen for now, and ones that will be most helpful. That took the quantity of supplements down to a far more manageable half quantity, thank goodness.

Other side effects have included extreme fatigue, body aches (flu-like), neuropathy affecting finger tips, lips, teeth, constipation, diarrhea.

Holistic treatments to augment chemotherapy:

support_iv_cancerSupport IV therapy – infusion at Dr. Panutich’s office (my complementary care oncologist), and this contains amino acids, minerals, vitamins. It will do two things: agitate the cancer cells so the chemo acts more effectively, and nourish the healthy cells by protecting digestive lining (which tends to get burnt out from the chemo), muscle strength and soreness, dehydration, immune support.

acupuncture_needles_sticking Out from Feet

Acupuncture & Community Acupuncture

Acupuncture – two sessions per week; one with my naturopathic doctor, Dr. Shaver, and one at a community acupuncture session (Group acupuncture? Really?). After the first treatment, I did not notice a difference. After the second and third, however, I felt very relaxed, pain-free, and I do believe that with the chemo side effects, the acupuncture will work – we’ll see!

Medical Cannabis Oil

Medical Cannabis Oil

Medical Cannabis oil – a really, really potent concentrate of the leaf. Just a dabble of this makes my head spin, and I take it at night when I’m going to sleep.

vaporizer-pen

Vaporizer Pen – Medical Cannabis

The Pen – this is like an e-cigarette, except it is filled with marijuana oil, no nicotine. This should provide relief for nausea almost instantly. Again, we’ll see!

Continued exercise – strengthening, stretching, cardio, meditation. All are keeping my spirits and strength up and allowing me to feel accomplished.

Healing Habits:

I’ve been asked whether I follow any special diet, if I’m taking anything special for treatments, and yes, I am. Mostly, I am pretty moderate, but I do avoid alcohol, caffeine, sugar, grains and dairy. I drink some when at a celebration, I can’t get by without some sugar, because it makes me happy. Grains, pasta, etc, I substitute yams. Matt and I harvest from the garden for most of our food. It’s sort-of a non-strict Paleo diet, the goal is to eat nutrient dense foods. Of course everyone has their food fetishes, their “needs”, but this is a good overall lifestyle. Along with the healing food, getting some creative time, some writing, visiting with friends and family, wearing comfy clothes, “getting out”, taking naps, and…

…just a spoon full of sugar helps the medicine go down!

spoonful_of_sugar

GOOD NEWS OR BAD NEWS FIRST?

Which do you want to hear first, the good news or bad news?

Now that I’ve learned definitively that I have a recurrence of cancer in my liver, that I am not “in remission” anymore, that I’m facing a new episode including surgery, chemotherapy, tests, hospitals, nurses, complications, recoveries… setbacks.

“Oh my God – What the FUCK?… I mean… what the FUCK!!?” Chris, my brother-in-law, echoed the disbelief already in Matt’s and my minds when we told him over the phone of the new diagnosis. We saw him and his daughters off to the airport just yesterday, after a weekend of sunshine and great sunset meals and river playing. Everyone one was healthy and fine yesterday. Today is grim business for just us two.

Matt and I have been through this once before. Getting the diagnosis, calling doctors, family, insurance, researching everything the doctors told us for hours and worrying about what’s ahead. The difference is that this time I have WAY better insurance (thank you Obamacare!), being more familiar with the process, we are better at putting the dysfuctional worry aside. Still, at bedtime the worry and unknown inevitably come back in the dark and worms around in our minds for hours.

I always take THE BAD NEWS first:

So the back story is, per doctor’s orders, I maintain quarterly blood tests, coordinating with my oncologist in Santa Monica whom I have worked with for 2 ½ years. I saw him last in January 2014. I also maintain annual colonoscopies and CT (Computed Tomography) scans per my new gastroenterologist’s orders. All have shown good results, and to my knowledge I have been in remission for over two years. Back with the original 2012 diagnosis for colorectal cancer, I had a CT scan reveal two liver cysts which concerned the doctors that they could be metastases from the rectal tumor, yet they could also be innocuous, a normal liver cysts that lots of people have, a reaction to birth control pills or some other chemical, which are unlikely to become threatening. The 2012 PET scan showed that these spots were of no concern.

*Positron Emission Tomography (PET) is a test where a radioactive isotope introduced in the blood stream shows thermal “hot spots” where active cells appear illuminated in the results, whereas CT, or CAT, scans use a large number of 2-D radiographic images to create a 3-D image of the inside of the body.

Last week, during my second annual colonoscopy check-up, I had a precancerous polyp removed from my colon. Nothing unusual or concerning, these are common and easily removed with no further action needed. The CT scan, a few days later, showed two “nodules”, or solid masses, which were new since last year. This result combined with the most recent blood test revealed elevated CEA levels (a cancer marker), caused my GI concern. He ordered a PET scan and recommended an oncologist appointment to discuss the results. Anxiety!

The scan was on Friday afternoon. When Matt and I showed up for the exam, we were surprised to find that it was a full-body scan. Was this a mistake? The spots were on my liver, after all. But it made sense even before it was explained; of course, if the cancer could spread to my liver, then it could also spread to the lungs, the brain, the bones, anywhere. I happily did the PET, then went home thinking, this is all a big joke and they’ll see that it’s nothing! Just the same old cysts, maybe they haven’t looked at this year’s and last year’s scans side by side? I’m healthy and happy in my life now.

Then there was a bleeping holiday weekend and most offices were closed on Friday, and all offices were closed on Monday, and it was hard to get a hold of any doctors or staff to ask questions, even to make appointments. Ok, so I got an appointment with the oncologist for Tuesday, thank goodness. All we wanted to know now was what the PET results were.

liver

The PET showed very clearly hot spots where the two liver nodules were (meaning activity, meaning cancer!!). Do you know how big a liver is? I really had no idea. It’s pretty huge! Anyway, there’s one nodule on the left and one on the right. The one on the left (or my right) is 3x3x4 cm, and the other is 2.5cm.

Holy lordy lord! That sounds really big to me. Considering we are talking one year ago that there was nothing but the cysts, and the CEA level in the blood was not alarming until now, either, these nodules sound really unreasonably large. Listening to what the doctor was telling me, all the worries I’d had during the night over the past weekend were coming back, and as I tried to focus on his words, I was intensely aware of my heart rate and how sharp my awareness was. Especially for Matt, who I knew was sitting next to me sweating outwardly and panicking inwardly.

THE GOOD NEWS IS:

frowny-face-high-blood-sugarThe nodules are compact and “localized” meaning they will be easily removed with surgery, and I will “still have a lot of liver left”, said the doctor. “Oh good!” I thought, although I like my whole liver, ayayay… frowny face.

There are no other occurrences than the two liver nodules.

The cancer has not proliferated throughout the liver, in which case they wouldn’t even attempt surgery, just attack with lots and lots of chemo.

So, I guess for a bad scenario, it could be worse! The recommendation of Dr. Look, the oncologist is to operate immediately to get the cancer out, and then they will know exactly what kind of cancer they are dealing with and will design a chemotherapy for it. This one will likely be systemic rather than targeted, so I’ll be shopping for wigs and warm headwear.

Now, I do have a second opinion with another oncologist scheduled for later this week, so, more to come.

Oh, my poor Matt. When we met I was the perfect picture of health and vitality. I had few needs, was a great friend, partner, lover, playmate, I added value to his life by being his foundation, loving unconditionally and taking care of anything he needed the best way I could. Now I feel like a real bummer! A disappointment. I expected that I would be healthy and strong into old age, take care of my darling husband, my parents, anyone else who needed me, and I’m being taken care of, now, in my 40s. Although I am staying positive, it’s hard not to not go to the dark places.

What the heck is my body doing? This is completely out of the plan! Not that there was a “plan” per se. I feel alienated from my body, like it’s letting me down, mysteriously letting illnesses get in, getting weak. But it’s my body. It’s life. And just when I was getting everything back in sync, seeing a NP, a Naturopathic Physician, who is helping me reestablish an equilibrium with diet and lifestyle, peace of mind, etc. Sometimes, she said during a recent appointment, these diseases are not caused by immediate environment, or just the previous generation or two. These diseases can go back 3-4 generations to the conditions our ancestors experienced and telegraphed through the generations. Also, as was brought to my attention,that the ancient Egyptian remains show evidence of cancer.

Makes sense to me, because how could some of the healthiest people still get terminal illnesses? The answer is, it’s beyond them. This notion, at least, allows me to believe I really didn’t do anything “wrong”, and I can blame my ancestors. Hee hee. Small comfort.

Good news and bad news aside, ONWARD! A new chapter begins.

MEAT FLAP

What do I make of this?

 

I posted some graphic photos at the bottom of this. For anyone who has a sensitive stomach, do not scroll down to see these shots.

 

Enjoying a contented, easy day of post surgery rest and relaxation, I had no stress, Matt had made sure I was comfortable and was now onto the work that he’d put on hold to be with me through surgery day. I was being ever so cautious and gentle with every movement so as not to stress my abdomen.

 

He had volunteered to change my surgical dressings, which were to stay in place for 24 hours post-op. Oh, my angelic husband; he was installing an air conditioning unit, and when it came time I carefully removed the dressings which had soaked up a good amount of fluid from the wound. What I found, I just couldn’t comprehend. I thought, “Did the doctor forget to stitch me up?” There was a surgically clean gash about 2-1/2 inches across my abdomen looking at me like a piece of raw, flayed steak, and underneath that, some kind of matted mass of gauze.

 

Matt dropped what he was doing and rushed over while questions were reeling through my mind and my mouth. I didn’t feel so well, and sat on the bed to allow some nausea and light-headedness to pass. As Matt prepped new dressings, he explained that the doctor said that this would be the only way this sort of wound would heal, “from the inside out”, and not to panic, it would be ok.

 

I lay down on the bed while Matt used some rudimentary tools to pull the gauze from underneath the meat flap, which did not want to let go where it was holding on. Oddly, it did not hurt, yet I was in shock from the sight of the gore.

 

Matt turned on my camera phone and handed it to me and said, “We should film this. Here, take some pictures!” Oh, Matt! I couldn’t think of anything I wanted to do less… yet, I knew he was right, I mean, isn’t this a once-in-a-lifetime event, dealing with a live wound on his wife’s belly? So I obliged, making a pathetic mug for the camera, which didn’t take much effort.

 

After several minutes of gently tugging, the gauze finally pulled free and Matt finished dressing me with the fresh materials.

“I can’t believe they let me do this,”

he mused, referring to the medical staff sending him home with the responsibility of keeping the flesh clean and alive. I couldn’t either. Doesn’t it seem like something a trained professional should be doing given the risk of infection, or flesh necrosis? It seemed like a big responsibility for my husband to take on for me, let alone for me to do on myself??

Baffled, I am!

The hissing in my ears from the shock of the ordeal finally wore off and I napped until dusk.

I felt better when I woke up, but was extra-cautious of my movements now that I knew I had a meat flap to protect!

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Grossed-out

Grossed Out

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franken-bunny

Yeah, kind of like that!

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meat_flap

Meat Flap

pathetic_mugs

Our Very Most Pathetic Mugs

gauze_extraction

Gross Gauze Extraction

STITCH INFECTION: ABDOMINAL SURGERY RECAP

Surgery for the infection underneath my abdominal skin went as well as it could have yesterday.

Abdominal_Infection_SurgeryMatt delivered me to the hospital and stayed with me the entire time (that they would allow him). He was such a good sport, yet I felt badly that he would have to take an entire day away from his obligations for this little medical hic-up, and worry about me for hours on top of it all. Argh! Well, what could be done?

 

After a fast from midnight building up to the procedure, Matt & I made it to the hospital on time at 9:00am for an 11:00 procedure. The surgeon was running an hour and a half behind, so it was quite a long wait, but no worry, I could catch up on all the wonky politician statements in the voters pamphlet, ha!

 

Then the anesthesiologist appeared. Oh good, I thought, we’re getting close. I just wanted to get home. After the hernia repair, back in October 2012, I remember waking up and fighting nausea for hours. That kept me at the hospital until 11:30 at night when my stomach finally settled. I made sure they would mind the anti-nausea medication this time. Ok, it was a deal. Dr. Tseng came in and reiterated the planned procedure. We told him to go take a break and get lunch, we would be happy to wait until he felt ready (he was 1-1/2 hours behind schedule, for some unknown reason, possibly a stressful one!). He laughed assured us he would.

 

Next think I know, I was in the recovery room (funny, the passing of time). The nurse was buzzing around my bedside and I heard Matt’s voice coming around the corner. All went well, and I passed this test. No nausea to speak of. I ate some ice chips, then sipped some water, then added saltines on top of that. I was out of it, but felt good. About an hour and I took two Oxycodone for some creeping soreness, and got dressed, and we left! It was about 4:00pm; a full day.

 

The doctor had found some extra suture material under the smaller of the two pimples on my abdomen, which would have made it impossible to fight off an infection, then removed some of the mesh from under the larger pimple. He found no tracks of infection leading to other areas under the skin, so was confident he excised everything he needed to in order to vanquish the infection. Let’s hope. Now I will be “packing the opening” with gauze to draw out fluid as the infection drains. The nurse recommended instead that I see a healing specialist who will have some alternative methods of healing the wound. I guess packing went out of fashion? Not too fond of it, myself.

 

I felt some wetness on my clothes and the wound had been weeping through the bandaging and all three layers of clothing, already! I think this is good? My body is expelling the infection? I am not to change the dressing for 24 hours, so I packed on a hand towel and pulled up a fitted cotton skirt to aid holding it in place. I looked as white trash as possible with my hot pink tank top, short, fitted skirt and bulging belly bandages. Ha!

 

It was such a beautiful, sunny day, a good day for recovery on the couch! And Matt stopped at the grocery store to buy some salmon and halibut to barbecue. It was peaceful at home. I snoozed for a while. We watched The Social Network, which we enjoyed. Even though we were both tired, we had a lovely date!

 

Fingers crossed, now we wait and see. Only if the infection does not go away or the hernia reappears will I be back in the hospital.

STITCH INFECTION REVISITED

Infected sutures from my prior surgeries are creating a complication today.

My next surgery happens tomorrow morning.

Let’s back up.

The 3 weeks of antibiotics prescribed to me took care of the infection in my hernia area for a few days. Then it came back. GRRR! Well, I had to expect it would happen that way, as it was foreseen by the fates. So, less than a week after the antibiotics ended, a pimple formed where an old one was. Then over time a redness appeared in the hernia scar itself and grew to a large pimple and opened up again. Ok, we’ve got to take care of this. Now.

My hernia surgeon is not on my new insurance plan, so I scheduled consultations with two alternate surgeons to get their opinions. Their opinions were in agreement on the approach to clean out the sutures and mesh from the hernia repair, thank goodness, and I scheduled a procedure for tomorrow! Rest assured, it should be a minor procedure. My surgeon wants to put me under, so he can really get under the skin and make sure he understands the problem and gets rid of all infected material. Ok, I don’t really want to be aware during that. Very likely that he won’t replace the mesh.

The hernia may not come back, but it could. It could come back tomorrow or it could come back any time in the future. Then it can be repaired – again – at that time. But tomorrow it will be an in-and-out procedure. I will come out of OR (the operating room), then once my vitals prove stable I can go home, probably mid-afternoon, then back to business the next day. Ok, I can deal with that.

The surgeon who provided the second opinion cautioned, a full fix on this hernia could take “a while”. Yeah, I kind of figured. It’s quite amazing how complicated these hernias can be to fix. You could have a handful of surgeons review the same situation, and have a handful very different opinions on how to fix it. There are lots of material and technological options for surgeons to use, and there are a lot of body types among patients. Every patient will respond differently to a chosen treatment.

So, it seems to be a moving target.

Wishes of luck will be appreciated! I will update here once I am out.

CARING FOR THE PANCREAS

How to care for the pancreas

pancreas-care-happy

Happy pancreas

Since learning of high blood sugar results from my annual physical, I looked up articles on caring for the pancreas.

The internet says, what pancreases like:

–      Fresh lemon juice first thing in the morning, then throughout the day (acidic fruit, yet the body treats it as alkaline)

–       Lots of fruits and vegetables

–       Lean foods, low fats

–       Beans, brans, fibers, gelatin, pectin, agar

–       Green tea

Dr. Yeh reminded me told me to eat a healthy diet and stay active. The American diet usually means heavy dinners, but this is not always best. Try to spread dinner out to smaller portions over a longer period.

Then, my mother-in-law heard on the news that everyone in America is pre-diabetic (I assume, besides those who are diabetic already). REALLY!? Why don’t you hear about this? And why would I not believe this stat? Even some of the healthiest people I know still include candy in daily diet, sugar drinks, alcohol, refined sugar and carbs. Kids trick-or-treat, have birthday cake, pop, candy with terrible ingredients and are rewarded with doughnuts larger than their heads… no wonder we grow up to be diabetics. frowny-face-high-blood-sugar

And most people aren’t “the healthiest people”, yet they live long, comfortable lives, assuming they don’t die from diabetes or cancer or vehicle accidents… Maybe this news of “high blood sugar” on my annual physical blood test is not so alarming. Maybe I can not panic about it.

So, with that in mind, my revised diet strategy is *less* ice cream, alcohol, sugar at snack time. Less quantity of food per serving with more small snacks. At least to start out, and then move into a more refined diet plan. Then I will live a long, comfortable life, assuming I don’t die from diabetes, cancer or some kind of vehicle accident!scoop-of-ice-cream

The result?

So far, after a week, I feel better! Less gas, less diarrhea and discomfort at night. That’s the biggest difference. I still eat a little too much quantity at dinner (I am quite the cook), yet compared to the previous extravagant meal and dessert routine and glass(es) of wine with accompanying discomfort, I do feel much improved!

Of course, few will argue that food is a culture. It is my culture. Matt & I eat well and we feed people who visit us very well, like *good* food. Anything in moderation, and so that is the key with this new diet plan: moderation.

Pancreas: What say you? I guess I’ll find out at the next annual physical!

PROGRESS REPORT

Remember in school when we got progress reports to show our parents how we are doing?

It’s time for a progress report!

All things considered, I can say that I am doing very well indeed. I wish I were closer to the end of my medical bill horror show, but alas, it won’t be finished by year’s end like I was hoping. Mostly the expected stuff I suppose; nobody wants to kiss off their money charged, but like I’m trying to make clear to the medical billing departments, “You can’t squeeze blood out of a turnip!”

It doesn’t help that the insurance company before the procedure was performed did not disclose to me that, “Oh, your hernia surgeon, medical team and procedure are all covered, *but* the hospital is not!” So, I owe a quarter of the bill on that procedure which *should* have been covered… argh! But I won’t bore you too much with the details.

Besides that…

…with a few minor modifications post-hernia, I am back to my old ways. The ‘modifications’ I am referring to are things like not using the torso for ANYTHING besides standing up straight. Don’t want to undo that new hernia mesh. Also not lifting anything. Sorry Matt, packing I can do, but moving boxes is up to you, Babe.

A follow-up blood test at my oncologist’s office gave a clean report, meaning I am still in remission and starting off on the right post-treatment track.

I had a bit of a horror the other night when I looked at my poor scarred belly, and noticed a new bump. Ohhhhh. That’s not good. Even Matt had to admit that it looked new and a little unusual. This is the paranoia I referred to in this post. Well, since that day, nothing has changed, fortunately. I go on wearing my “belly bra” and hoping that it won’t get worse, or that it was just angry that day and will go away.

plumbing_post_cancer

New Plumbing

Bowel habits are, well, different forever, but I will definitely grow into them. The list of inconveniences in order of ‘annoying’:

– stains in the panties!
– I don’t know whether gas means *just gas* or if something comes with it.
– I have to “go” soon after a meal… 2 or 3 times.
– prickly butt when I’m hiking (for some reason thorough wiping isn’t as effective as it once was). Matt suggests a toilet paper barrier.
– bladder infections: a new phenomenon to me! Arrgh! And dang if it doesn’t happen just before a long road trip, every time so far.

So, in regards to the new plumbing, there is nothing that I can’t live harmoniously with, and there is nothing to say that it won’t get better with time. Still the evidence shows that I have experienced life-long changes this year that the average Joe/Jane does not have, and now I am among an elite group of ‘special’ individuals who have to do laundry more often than average.

The rose-colored short story is: Life is good, and every day is a bonus!

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