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!

Not exactly what we'd hoped for

Met with my  medical oncologist and  my radiation oncologist today and  got the results of the CT scan I had on Friday.  Instead of my metastatic liver tumor shrinking, it has grown. The  report states that  everything that showed up on the previous scan is stable except for the  liver tumor.  Which is very disappointing.   It  was 1.5cm when first discovered in May, then after 8 rounds of   aggressive chemo it shrank to 1cm. I finished up the last  FOLFOX plus Avastin treatment on September 30, had a month off to recover, then  began chemoradiation on November 16, finishing up on Dec. 30. So after 28 treatments  of radiation aimed at the rectal tumor, during which I was hooked up to a chemo pump that delivered  5-FU  twenty-four hours a day 5 days a week,  the liver tumor grew like Topsy and is now 3x2.4cm. 

Quite disappointing results, especially since the  5-FU caused nasty side effects like mouth sores and peripheral neuropathy. So  as much as I would like to say that the nasty treatment was worth it given the results, in all honesty I can't.  But now  we just have to move on and figure out what  to do next.  I meet with the colorectal surgeon on Friday to see  if an exam and possible scope of the rectal tumor shows the positive response the CT scan shows, or whether he feels we need to  go ahead with  surgery on the rectal  tumor. After that and after the oncologist and surgeon  decide on a plan, they'll  determine when we  go back to treating the  liver with another blast of chemo in order to shrink it again  before doing an ablation or a resection. The medical oncologist is concerned that we not wait too long since it does seem very chemo-sensitive and   is afraid it will continue to grow  as long as it isn't being treated.    On a  little bit of a positive note,  when the  radiation oncologist read the  scan report, he decided to pull up the actual axial images with the slices from the scan.  He says that the images are not quite as alarming as the   written report  and he  was much more optimistic after seeing them. I'm hoping his optimism is justified. 

Meanwhile, I'm still planning to  start seeds, plan a garden, keep refilling the bird feeders,  go to yoga classes, enjoy bird watching, moon gazing, cooking and finding ways to aggravate poor Mr. G.  In  other words,  do  all the things  that I normally do and still can do as long as I am able to, because, as I mentioned before, life goes on.  Until it doesn't.  So we may as well go on with it and continue the business of living instead of wasting time worrying about dying. 

Gut Feelings, Part 5

 

My port placement was scheduled for May 19 at 6:30 in the morning, about the same time that Brian was scheduled to fly back to Illinois.  Fortunately his brother, Jonathan , was able to drive him to the airport  that morning.  Mr. G and I arrived at the outpatient surgery  clinic in the hospital, filled out some paperwork and waited, along with a roomful of other patients.  A hospital worker came out and   said a prayer (this is a Baptist hospital) and shortly thereafter I was called back to prep for the procedure. After disrobing (isn’t that a lovely word?) I attempted to  don the gown they had provided but had a devil of a time trying to figure out how to get it on- it seemed designed for someone with  more than two arms. With some help from the nurse I finally got in on, along with some lovely little fuzzy lime green socks.  The anesthesiologist came in   to ask questions about my health and the surgical nurse hooked me up to some monitors.  I was finally wheeled across the hall to the operating area where I was transferred onto a narrow table.  The doctor came in to tell me not to worry; they were going to take care of me.  I wasn’t actually worried up until that point. I told him I’d heard mafia bosses say the same thing in movies and it wasn’t a good thing.  The anesthesia nurse began cracking jokes as she   put some tubes up my nose and soon I was out like a light. I woke up in the recovery area, where someone came around with a portable x-ray machine, and  put a metal plate   under me.  I discovered later that this was to make sure that the port catheter  was  placed properly in  the vein.  All went well  and I now have this funny  hard bump on my upper chest.  It reminds me a little of the stories of  alien implants and I envision it one day coming to life and  trying to break through my skin. What is really neat, though, is that from now on, no more needle sticks for blood tests or injections- it will all be done through the port.  Another neat thing was that I was not allowed to drive, lift anything (not even a skillet, the nurse said) or exert myself for a week, so Mr. G had to wait on me hand and foot.  I  played that part for all I could get out of it! Mr. G was  good humored, though.  He bought a package of little plastic minion figures and told me to call them when I needed anything!

Once home, I phoned Dr. Vance’s office to let them know the port was in so they could set me up with the portable pump and coordinate with the radiology dept.. A nurse came on the phone and told me the plan had changed and I would not be getting the radiation therapy after all and would be coming into the clinic for infusions on a different chemo regimen of  several drugs in addition to the 5-FU.  This of course, freaked me out, since they didn’t give me a reason for the change. Dr. Vance phoned me back, apologized for the lack of communication and explained that the PET scan showed that the spot on my liver was indeed cancer – metastasized from the rectal tumor.  Under the circumstances, she and the radiation oncologist had decided that the best course of action would be to try to shrink the tumors with a stronger dose of chemo and forgo the radiation for now.  My first chemo treatment was scheduled for May 27 at 8:45 in the morning. I was told to expect to be there for 4 1/2 hours. I was also told that the copay for each chemo session would be between $600 and $700 dollars.  That came as quite a shock,  but the clinic’s financial adviser told me there was a foundation that covered the  co-pays for eligible patients and that she would put in an application on our behalf, so I kept my fingers crossed.