Back in the Infusion room, but it was a good day

Today was the first day of my  new round of chemotherapy to try to shrink the  liver tumor that  metastasized from  the original rectal tumor. When  I finished up the  eight  FOLFOX plus Avastin treatments  in September a CT scan showed that the liver tumor had actually shrunk while on that regimen, but it grew while I was   receiving chemoradiation for the rectal tumor in November and December, so the tumor seems to be quite chemo sensitive. The oncologist wanted to get me back on chemo  as soon as possible to shrink it back to a size amenable to ablation. Since the rectal tumor has shrunk to almost nothing and seemed stable, the  colorectal surgeon also saw the liver mets as a major problem, so they decided to delay surgery and go after the liver lesion with chemotherapy again.

Low white blood cell counts had been the major side effect of the  Folfox  treatments, which delayed  a couple of rounds last  spring and finally ended up with my having to take Neupogen shots between treatments to raise the counts. That was not much fun! The Oxaliplatin also causes quite a few nasty side effects, including  neuropathy in your hands and feet, which I got but it wasn’t  a major problem. This time, I’m getting the FOLFOX without the OX- just the fluorouracil (5-FU) and levoleucovorin (Fusilev),  no Oxaliplatin.  But I am getting the bevacizumab (Avastin) along with them.

It was 24°F when we left for the clinic this morning!  The wonderful Mr. G had braved the cold to start the car a little earlier so it was nice and warm inside. We needed to leave during rush hour to get there in time, and were afraid we’d run into traffic congestion, but it didn’t happen and we were actually fifteen minutes early!  I was weighed, had my blood pressure checked, gave a urine sample and had some blood drawn for testing. My blood cells, both red and white, were high enough to begin the treatment, thank goodness! There weren’t many patients in the infusion room and I was able to pick my favorite chair with the most essential amenities: close to an end wall with a plug for my Kindle recharger, and the chair closest to the bathroom. 

I settled in reading a book on my Kindle and got all cozy under my blanket as the infusion nurses hooked up the IV tubing to my port and began infusing. The first IV bags hooked up contain drugs to lessen the effects of the later drugs: dexamethasone, a corticosteroid that is an anti-inflammatory that acts to reduce swelling, prevent allergic reactions, treat nausea and stimulate appetite in certain cancer patients. Then come the anti-nausea drugs, palonosetron hydrochloride and Fosaprepitant dimeglumine (Emend).  Last, they hook up the Fusilev, then the Avastin. When they have dripped out , the nurse  injects a  syringe filled with   5-FU directly into the  port catheter tubing.  This is called a bolus injection and  is a booster for the 5-FU   infused via the portable pump for the next 46 hours. Once the portable pump was hooked up, I was all finished, got the card for my next appointment in  2 weeks and was on my way home, feeling pretty good but became very tired as the chemo fatigue hit. In fact when we got home today there was a package on the porch, but I was too tired to open it.  I headed straight for the bedroom and took a nice long nap. Agatha and Patches joined me on the bed and hogged my covers.

The birds had emptied two of the feeders while we were gone, and  some of the   plants had dried out as the sun heated up the  greenhouse. When I woke up I actually felt perky enough to  refill the  feeders and water some plants. And I checked the package that had arrived.

It was  Kitchen Gadgetry! As you may know, the wonderful Chef’s Catalog closed up shop after 36 years.  Before they   did, I bought a couple of things at terrific prices in their going out of business sale. That’s what was waiting for us on the porch.  One of the items was  a 5.5 inch Zwilling Pro Ultimate prep knife, described thusly by Zwilling:

“This amazing prep knife will become the go-to knife in your kitchen. It excels at a multitude of tasks—peeling and chopping vegetables and fruit, slicing meats and cheeses, butterflying chicken breasts, deveining shrimp and much more. The well-designed blade allows for plenty of knuckle clearance when you’re chopping on a cutting board yet is small enough for in-hand paring tasks, such as peeling and trimming apples and potatoes. Cooks with small hands will appreciate the compact size of this versatile knife.

The user-friendly ZWILLING Pro prep knife was created by renowned Italian designer Matteo Thun and made in Germany by ZWILLING J.A. Henckels, the company that sets the standard for exceptional cutlery worldwide. It features a unique curved bolster that supports the professional grip, with thumb and index finger on the blade, for safe, precise cutting and less fatigue. The redesigned blade has a broader curve in the front to facilitate the rocking motion of Western cutting, with a straight back that’s ideal for Asian chopping. The full length of the blade can be used when cutting.”

What cook with small hands could resist such a wonderful tool?  Not this one!

I also bought a set of utensils, but more about them later.  All in all, it was a pretty good day. And I got more good news- the foundation that helped with my chemo co-pays last year is out of funds for colorectal cancer and couldn’t help again, but the patient financial counselor at the clinic had submitted my info to another foundation and they DO have funds, and approved me for co-pay assistance. What a relief that is!

Costs, Chemo and Beelzebub

Tomorrow I go for my fifth chemo treatment.  I had hoped this would be the next to last treatment, but evidently I misheard when Dr. Vance told me how many sessions were planned- I heard six, she said eight, so we still have four to go. I’m keeping my fingers crossed that the three Neupogen  shots  last week  did their job of stimulating my bone marrow to produce more white cells, I really don’t want another delay.

Today I have been trying to make sense of the billings for all this treatment. Thank goodness I’m on Medicare and  have a supplemental  policy because  we would be bankrupt otherwise, I’m sure. There have been several  news reports and TV segments about the high cost of cancer treatment, but until you actually begin to see the bills, you have no idea!  At least, I didn’t.  And once I did see the bills  I could see how very little sense the whole medical billing process makes.

Take, for instance, my visit to the clinic and infusion center two weeks ago.  I had the usual bloodwork, a visit with the doctor, and then the chemo treatment in the infusion center.  The amount billed to Medicare/the insurance company by the medical providers was $15,130.00.  Of that amount the insurance allowed amount was $3562.95, and the amount paid by Medicare/ the insurance company was $2849.71.  My copay share is $655.09. Fortunately, because our income makes us eligible for some assistance a foundation pays a portion of that copay, greatly reducing our out-of-pocket expenses. The Neupogen shots are billed at $1243.00 each, but only  $498 of that is allowed by the insurance company, they pay $395 and my copay amount is  $95.00, so at three shots every other week,  it is really going to add up and I’m unsure whether the foundation covers a portion of the Neupogen copays.

 What is interesting is the huge discrepancy between the amounts billed and the amounts allowed and paid by insurance. The providers have agreed to the amounts paid, so there will be no additional billing to us to make up the difference. I wonder if those without insurance are also billed at the high amount and are not entitled to the discounts, or whether they can negotiate a lower cost closer to  that amount the insurance companies allow. It boggles my mind that a provider   can bill   over $11,000.00 more than   the allowed amount and then simply write off or absorb the difference or bill that amount to someone without insurance. It’s a very crazy system.  When families are dealing with the stress of a cancer diagnosis and the side effects of the treatment, the last thing they need to worry about is how and if they are going to be able to afford treatment without going bankrupt.  In fact a 2013 study reported by CNN found that “Bankruptcies resulting from unpaid medical bills will affect nearly 2 million people this year—making health care the No. 1 cause of such filings, and outpacing bankruptcies due to credit-card bills or unpaid mortgages, according to new data. And even having health insurance doesn't buffer consumers against financial hardship.” 

 I really intended to be a little more upbeat in my post tonight, but with all the political rhetoric floating around about cutting "entitlements" and social services,  with politicians  using Medicare and Medicaid as political footballs and the legislature of my own state, Alabama,  attempting to  gut Medicaid in order to  make up for massive  deficits brought about in part by their own refusal to deal with or change a ridiculously regressive and inefficient tax structure, my  upbeat and humor buttons are stuck tight and won’t work. Maybe  the oncology nurses will give me an infusion of humor along with  the Bevacizumab and Oxaliplatin tomorrow.   Although, now that I think about it,  the name Bevacizumab  always puts me in mind of Beelzebub and it’s unlikely anything  humorous can come from something with a name like that.  But hope springs, so wish me luck tomorrow. 

Gut Feelings Part Six, The Chemo begins

I was up bright and early on the morning of May 27, arriving at the  oncology department at around 8:30 AM.  I was nervous, anxious and in desperate need of unloading the cup of coffee I’d had earlier, so went in search of a restroom.  I found one down the hall, seated myself in the stall and was nearly scared out of my wits when I heard a great whooshing noise- the stupid toilet was flushing violently with me sitting on it! Quite unnerving! I returned to the waiting room and was telling Mr. G about  the scary experience when I was summoned to the lab, where I was weighed, had my blood pressure and temperature recorded, and then was  asked, “Do you have a port?” Out came syringes, tubing and a can of icy cold stuff they sprayed on the port area before sticking in a needle with tubing attached then using a syringe to withdraw blood.  I turned my head during that part because I’m a wimp. After they taken all the blood they needed (which seemed like a lot to me at the time) they flushed the line with a saline solution, handed me a little plastic cup and told me they needed a “sample.” I wish they had told me that before the experience with the wildly flushing toilet. Thank goodness they directed me to a rest room that had a normal, non-threatening toilet that flushed only when the flush lever was pressed. I returned the tiny sample to the lab, asked for a copy of the blood work results and was told to go down the hall to the treatment room where the doctor would meet with me.

Dr. Vance, the oncologist went over the results of the PET scan and an earlier blood test that showed my CEA (carcinoembryonic antigen) level as 8.7, quite a bit above the normal level as a result of the cancer.  She said we were using a more aggressive form of chemo in an effort to shrink both the rectal and liver tumors.  She was pretty confident that I was a good candidate for either a liver resection or for ablation to get rid of the liver tumor. We discussed the possible side effects from the chemo, one of which is peripheral neuropathy, numbness, tingling and cramping of the hands or feet, often triggered by cold.  Thank goodness it’s summer! After she checked my heart rate and   such, she sent me across the hall to the infusion room.

  There were several people there already, including one very young teen-ager who was apparently there for her first treatment too and an older woman, a baseball cap covering her bald head, who was in a very good mood because this was her final treatment. 

 I picked out a chair and the nurse came and gave me papers to read, describing what drugs I would receive, what side effects to expect, etc. She then stuck a name label on me and began to hook up bags to the line going into the ports.  The first infusions are of corticosteroids and antiemetics to help prevent nausea and allergic reactions to the chemo drugs.  When it was time for the actual drugs to be infused, which in my case are Oxaliplatin, Avastin and Fusilev, the nurse donned a sterile gown in addition to the gloves and hooked up the bags containing the chemo drugs.  Since there is an excellent wifi connection in the clinic I was able to pass the time by reading and watching a video on my Kindle Fire, checking in with facebook, unplugging the pump attached to the IV stand and wheeling it into the rest room.  Evidently, all of the liquid   being pumped into me was overtaxing my walnut sized bladder.   By the time the four hours were up, I was pretty adept at navigating the IV stand past the other infusion patients, around the corner past the nurse’s station and into the rest room.

Finally, the bags were empty and the nurse once again donned her sterile gown and gloves and brought out a portable pump that I am to wear around my waist for the next 46 hours. The pump is inserted into a pocket on a waistband after being hooked up through my port. We were able to run the tubing  under my shirt to avoid  having it catch on something and get pulled out This pump will infuse a drug called   Fluorouracil (5 FU for short) into my vein over the next 46 hours. I was instructed to return to the clinic on Friday morning to have it unhooked.  After some final instructions: stay out of the sun, do not drink or touch anything cold, do not reach into the fridge or freezer without gloves, avoid people with  colds or coughs, etc. I was sent on my way. Here’s a pic of the pump- it reminds me of the jetpack Wonderman wore, but other than that Wonderman and I have little in common!