Category: Cancer Update

10 June 2023

I am really upset. Holy Cross has an app called MyChart. MyChart sends me email notices when there is something that needs my attention: forms to fill out, appointments, test results, etc. Today I received an email that said there was a new questionnaire available. I logged into MyChart and was confronted with 118 new appointments starting Monday the 12th for infusions, Magnesium, Clinic appointments, CBC Differential and a comprehensive metabolic panel. In essence, I’ve been scheduled for 2-3 hour appointments weekly until April 2025.

When I called, their phone system was inoperative and I couldn’t even leave a message for a return call. Later in the morning I managed to get to the voice mail of the hematology/oncology nurse for Dr. Arnaoult. About 2 pm, I got a return phone call from Inger who was subbing for the hematology/oncology nurse. She had no idea what I was talking about nor could she see the same screen at which I was looking.

I do remember Dr. Arnaoult coming by during my first infusion to inform me he was taking steps to keep me hydrated but that was the only thing he said. I’ve only recently come to grips with the idea of a total of 14 infusions of chemotherapy. I did not sign up for 118 other visits to Holy Cross for the next 2 years for treatment.

I can understand they would like to check my electrolytes and magnesium levels after the first infusion and to check if I were staying hydrated. However, why would they need to do this on a weekly basis other than my insurance will cover the treatments?

Here are the charges to Medicare from April 21-May 5, 2023

DATE	CHARGE	CHARGED	MEDICARE APPOV
4/21/2023	Tissue Marker	$69.61	$69.61
	Pathology	$880	$880
	Genetic Analysis	$671	$671
	Additional Genetic Anal.	$1,342	$1,342
	Ultrasound of Breast	$243	$243
	Outpatient Clinic	$358	$358
	Biopsy of Breast	$4,234	$4,234
	Genetic Anal.	$876	$129
	Pathology	$123	$36.86
	Biopsy	$541	$162.03
	New Patient	$448	$139.83
	Ultrasound	$283	$33.97
	Staining tissue	$115	$34.49
	Aspiration small joint	$786	$786
	Outpatient Clinic Visit	$358	$358
	Injection	$14	$14
5/3/2023	X-ray of chest	$41	$10.78
	Insertion of Needle	$15	$15
	Blood Test	$638	$638
	CBC Count	$528	$528
	Urinalysis	$340	$340
	X-ray of chest	$458	$458
5/10/2023	Office Visit, Burgers	$478	$148.82
	Office Visit, Patel	$608	$189.81
	Office Visit, Arnaout	$608	$189.81
	Outpatient Clinic	$358	$358
	Electrocardiogram	$167	$167
	Totals	$15,580.61	$14,736.01

There was no aspiration of a small joint on 4/21/2023 and as you can see, there seem to be some duplicate charges but it could all be down to coding error. Who knows and I certainly don’t want to spend hours on the phone with Medicare straightening out the bills. Even though the Medicare approved amount is official, that’s not what Medicare often pays. Thank goodness my supplemental insurance covers the rest.

I hate to be a doubting Thomas but I really can’t think of why I would need to be monitored for 118 sessions for electrolytes and magnesium. I can understand to do periodic tests of CBC differentials and a full metabolic profile but not to the extent of this plan.

In reality, they may have scheduled these as possible infusions/Magnesium/CBC Diff/Metabolic Profiles but they have now actually scheduled me for them all they way through August of this year. Those are on the books with times of the appointments. It takes at least one hour for the blood test to come back – if they are not backed up.

I’ll go in Monday and do the required procedures and then I intend to raise hell.

12:37 pm

I’m very, very sick today. I didn’t get much sleep because I tossed and turned over the anticipated treatments. Diarrhea set in around 6:30 am and nausea hit me a little later. I was down to three Gatorades for electrolytes and texted John, Joel and Keith to see if anyone could bring me some. They got me two packs of Gatorade so that should last a little while. This is the sickest I’ve been since the first infusion on Monday.

I actually messed the bed one time before I could get to the toilet and had to change the sheets while feeling horrible. My mouth is sore, I’ve got a sore throat, my tongue feels like it is getting sores on it. I have stomach cramps and I’m exhausted. I have pangs around my heart and my joints ache. Oh the glories of chemotherapy.

I also tried to cancel Monday’s appointment but again their phone system didn’t work and when I reached the infusion center (finally) they said I couldn’t leave a message.

I’m discouraged and depressed and sick and pretty much in a foul mood.

6 June 2023

It didn’t take much time for the first side effects to show up. One of the drugs I take has a side effect of diarrhea. Another has constipation. The constipation drug won out.

I’ve only been really constipated once in my life and that was on a canoe trip with grad school friends into the Quetico in Canada. I think I was three days without a bowel movement.

The much more usual case for me is diarrhea. Mom was a firm believer in laxatives and enemas when Archie and I were kids. My first experience with diarrhea was with her obsession that her kids were wormy. Archie and I would annually be required to down two bottles of of citrate of magnesia and try to poop in round paper cups without spillage – it never didn’t spill over. The doctor would then do a fecal smear from the overabundance and check for worm eggs.

Then it was the spring cleansing with castor oil. She would chase us around the house with a tablespoon of the stuff. Finally she got smart and hid it in orange juice. For years, I couldn’t drink oj without thinking of the taste with castor oil in it. Then it became enemas at the least hint of not pooping on demand.

She not only believed in it for her kids but for herself. I swear I would be in the dorm at Ole Miss and diarrhea hit me out of the blue. I would call home and tactfully raise the question if she had taken a laxative. The answer was always yes. I think I had sympathetic diarrhea for years. When she took a laxative, I pooped. In essence, unless more is forthcoming this morning, I’ll be forced to take a laxative. That’ll be the first time since my last colonoscopy 9 years ago.

Tie the constipation to chem fog and slight tremors of the hand this morning and I can say the side effects are affecting.

I noticed the brain fog when I started my breakfast routine and realized I was getting things out of sequence. Yes, I know that’s silly but as I age, I find it comforting to have a routine for breakfast preparation. First, it’s get the French press out of the washer along with my coffee cup. Then add sugar to the cup, a pinch of salt to the press (enhances flavor), grind the coffee and put the kettle on. Then I reach for the bowl for my fruit mix and top with yogurt. Then the health tests: sugar, blood pressure, dissolved oxygen, temperature and ointment for arthritis. This morning I managed to scramble all the routine. Then when I started my morning walk, I forgot my sunglasses, my handkerchief and face mask (I only wear it if I have a prolonged conversation while on the walk) and thumb supports for arthritic thumbs. I did walk 1.3 miles.

The slight hand tremors made me a butterfingers this morning. It’s lessened as the morning has gone on but it’s still there.

Surprisingly, I got enough sleep last night even though I was getting up every four hours for nausea pills. They must work because I had no nausea. For some reason, my alarm went off between the 4 hour periods and brain fog had me take a pill when it wasn’t due. I figured, what the hell? It probably didn’t hurt me. I’m back on schedule now.

When I got back from my walk, Jose was in the drive waiting for me to open the door. He’s putting the skim coat on the drywall as I write this. Little by little, I see a light at the end of the tunnel and Chad has promised no more trains coming through.

On a brighter note, when I was undergoing infusions, an older lady was brought into a cubicle next to mine. I later found out she was undergoing radiation therapy and was having a hard time: nausea, mouth sores, etc. I had brought along some of the King Leo peppermint sticks. After Jimmie and I talked about them, I sent her some and unbeknownst to me, she had sent me some. I took out three sticks: one for me, one for the nurse Pat, and one for the lady. They immediately recognized the sticks with the King Leo writing on the wrapper and they both broke into smiles. They were thrilled with the candy from our childhoods. It seems like Jimmie and I are not the only ones to wax nostalgic. I didn’t know so many people had been exposed to the product.

I head in for my immune booster at 4 pm.

Stay tuned!

5 June 2023

Last night I took the steristrips off. It was good to get rid of them and it relieved a little of the tugging when I turned right or left in the bed. I had some really good dreams. I have one dream in particular that recurs and it did last night. It’s my favorite. I may blog about it one day. It put me in a great frame of mind.

The day started at 4:30 am. I beat the alarm by 30 minutes. I got through my morning routine and Tom showed up at 7:15 for the trip to Holy Cross. He went in with me and then had to wait. It was after 8 am before they took me back into the infusion center for a 7:45 am appointment.

My nurse is Pat and she seems super efficient. That may also be because I hear they are short-handed with staff and she has to be. Pat had trouble with her computer but eventually she got logged on and began the process. She’s good at explaining every step.

First, she cleaned the port and inserted the needle. I read that it’s a good idea to but a lidocaine cream on it to numb it and then put Press and Seal so it’s not rubbed away by your clothing. I did that before I left the house and she complimented me on doing it. I didn’t even feel the needle going in.

She flushed the port with saline to be sure it was clear and functioning, drew blood, put in the order for my drug cocktail, and then proceeded to give me an anti-nausea drug and a steroid (to prevent muscle aches and pains).

Taxotere is the drug that will take so long to administer. It’ll take at least two hours to infuse into me. Even the next time will probably be an hour and a half. They want to check my reaction to that particular drug. She still anticipates it’ll be 6 hours. At the moment, we are waiting on the pharmacy to prepare the drugs.

I found out they administer each drug individually. They started with Perjeta which is a monoclonal antibody. Next will be the second monoclonal, Herceptin. Both are to help your immune system. Perjeta will take an hour, Herceptin an hour and a half.

After those two, it will be Carboplatin and Taxotere. The Carboplatin is another hour and the Taxotere is two hours. Hopefully, the Taxotere will will eventually be done to one hour after several sessions.

12:20 pm
Between the first and second drug, they wait 30 minutes to see if I have a reaction. So far, I’ve finished Perjeta and no reaction. Currently, I’m about half way through the Herceptin. By my calculations, the earliest I’ll get home today is around 4:30 pm. They will watch me very closely with the Taxotere.

Pat says that I should be fine today – feeling good, good energy. The day after I’ll still be OK. By day three, I’ll be a little less OK and by day four, I’ll feel like s**t. Then I’ll level out and back to normal.

To top off the morning, I got a text from Chad that my alarm was going off at the house. I swear I didn’t reset it after I canceled it this morning. I remember walking out of the back door and locking it without the alarm. In any case, I gave him the alarm code to shut it off. Hopefully the police didn’t show up and try to arrest the work crew.

The nurses run from one unit to another addressing beeps on the IV’s. Every one works very hard here. There are several volunteers on the ward that come by every so often and ask if you need anything. They provide warned blankets, a pillow, and bring around snacks. They provide coffee and juices. I brought a coke (Mother used to give me a coke to sip to settle an upset stomach), a Whole Foods sandwich, a Fungi apple cut up, and one of John’s Rice Crispy treats.

Dr. Arnaout (hematology oncology specialist) stopped by and again explained about doing the chemotherapy first. He also said I would certainly have a mastectomy at some point but the oncology team all agreed to try to shrink the tumor first. He said he would see me again for my next session on the 26th.

With all these infusions, I’ve been a frequent visitor to the bathroom!

1:00 pm
They just started the Taxotere. Pat cautioned me to let her know if I feel anything differently than I do now. I think this is the one they are most concerned about and also why they administered the two monoclonal antibodies first.

I explored my surroundings a little and made it out to the atrium. They have two walls of plants.

5:54 pm
I’m home! It was 8 hours of drips into my port. They changed my time for the immune booster injection from 1:15 tomorrow to 4 pm tomorrow. It seems I have to have 24 hours elapse before the booster. I finished the last drip a little after 4 pm. Pat says I check in, they take my vitals and give me the injection and I’m out.

She also said to take Claritin for 5 or 6 days after the injection. Holy Cross apparently did a study on the effects of Claritin with the booster. The booster affects the stem cells in the long bones and boosts the production of white blood cells. That causes your bones to ache. Claritin mitigates the effects of the bone aches.

Since hurricane season started June 1st, it was time to get my palms trimmed. The neighbor across the street has a lawn service where he does lawns and tree trimming and he agreed to do them today for bulk trash pickup on Wednesday. He’s done mine for the last 2 years and he always goes above what I ask him to do. The yard looks great, the trees look great and he only charges $600. He does about $1200 worth or work.

The way I look at it is one treatment down, thirteen to go.

Stay tuned!

30 May 2023

The good news just keeps on coming! I had an appointment with my ophthalmologist today. You know the routine. They have you stare into all these machines to take photographs of your retinas, then you go to the machine from hell that checks your peripheral vision, and then of course the dilations. I was waiting for the D.O. to come in when my newish (Nov 2022) Maui Jim glasses fell apart in my hands. That’s the second time that has happened. The first time it happened was a few weeks after I purchased them, and they are not inexpensive glasses. The clinician said they are really strong glasses and hole up better than most. The clinician thought the lens had broken but the D.O. said no. He repaired them on site so that was just a minor stress point.

The larger stress came when I informed him of my breast cancer diagnosis and mentioned I started chemo on June 5th. He then proceeded to tell me that chemo would probably speed up my cataract development. I’m well on my way to need cataract surgery anyway – a year or two in the future – now it seems like it may occur sooner than that.

When I mentioned I would be on tamoxifen for five years, he said that would very possibly lead to retinopathy. The what-if scenarios include loss of color vision and central vision. If severe, it could lead to blindness. Chemotherapy is targeted at dividing cells which include many cells of the body that need to replenish, like corneal epithelia. Maybe cornea transplants are in the future.

I realize this sounds like gloom and doom but the reality is that most of this will probably never happen.

What is with my credit union? Last week I received a check from my flood insurance company and I wanted to deposit it into my savings account. Since the check was a rather large sum, I didn’t want to rely on the U.S. Postal Service so I drove to the nearest branch of the credit union and stood in line – and stood in line – and stood in line. When I finally reached the teller, the first question was “What is this?” Although the check distinctly stated it was a check for flood damage, he looked at it for a long while and said he would be back.

He then walked into one of the managers’ offices and they conversed for a few minutes. He then returned, processed the check into my savings account and asked me to check the amount on the receipt. I did. It didn’t show the cents. I pointed that out and he said the paper was not adjusted correctly and it cut that part off.

Today I left the ophthalmologist and drove directly to the credit union to deposit a second check from the same company. Exactly the same thing happened. The line, the asking about the check, the consultation with the manager, and the processing of the check. It seems the credit union doesn’t bother with cents and did not include that on my receipt. It wasn’t the misaligned paper in their printer.

I could understand if it was a third party check or some such nonsense but why the problem with a check made out directly to me and going into my savings account? I don’t understand banking, I guess.

I asked my contractor when he would start contracting and he texted me that it would probably be tomorrow. I’ll reserve judgement on that text until tomorrow.

Anyone have any suggestions as to what to take to my first chemo session? It will last around six hours. I’ll take my iPad and charger, ear buds and maybe some crossword puzzles. I can take food and I was thinking sandwiches, bottled water, and cookies. Can anyone suggest anything else?

Stay tuned!

28 May 2023

I cheated by two hours. I was told I could remove the bandage over the port incision after 3 days. It also meant I could take a shower! I have to admit the bath wipes did an excellent job of making me feel clean but it’s hard to beat a shower. I can wash the area with soap and water but must pat dry the area around the incision.

I still have the steristrips attached and I have to leave them on until they fall off on their own accord. There are three or four internal stitches but they dissolve in a couple of weeks. The redness you see is the antiseptic they wipe you down with prior to surgery. Actually, they wiped me down twice. Once and then let it dry and then a second time and let that dry. It didn’t come off in the shower and I suspect it’ll take quite a few more showers to get rid of the stain. By then I”ll probably have been through my first infusion.

The site is still tender and sore but with the bandage off, there’s less pull and push on the area. They say to put another bandage on if it begins to seep but so far, it’s be OK.

Who knew that in short order I would have a breast biopsy and port implant. Things can certainly change quickly in life.

Today was the first day I’ve driven the jeep. I headed to Whole Foods for some weekly grocery shopping. I was not allowed to drive for the first 24 hours but I was still in a brain fog for a few days after and I really didn’t need to go anywhere, anyway, so I stayed home.

Tonight is hamburgers with John, Joel and Keith. I should be able to get them grilled in between rain storms. It’s pretty much rained every day this week and sometimes accompanied by pretty severe lightning.

As of now, I’ve received two checks from my flood insurance. Now all I need is the contractor to show up to do the work. Fingers crossed!

Stay tuned!

27 May 2023

The port implant finally allowed me to get some sleep on my right side last night. It wasn’t exactly a bed of roses but if I positioned myself exactly right, I didn’t feel any tugging or stretching on the area of the port. I still seem to getting plenty of sleep but that will probably start with the chemotherapy so I better get it while I can.

My friends keep checking on me. It’s a good feeling. John, Joel and Keith are coming over tomorrow night. John is buying the burgers, buns, etc. and Joel and Keith are bringing a salad. On Memorial Day, Nancy and Michel are having me over for dinner. Tom is taking me for my first chemotherapy. John will come over and spend the night the night of my first chemo. Everyone is pitching in and trying to help out.

I was warned about one thing. For anyone staying over or visiting, when I use the toilet, I’ll have to flush two times. It’s to prevent someone from coming into contact with the drugs from chemo. There’s a couple of things that stand out about that. First, how drastic are the drugs that they don’t won’t people to come in contact with them on a casual basis? I’ve been told I have to drink copious amounts of water to flush the drugs from my system and they say I’ll be spending a lot of time in the bathroom.

A second more concerning thing is considering the number of people in Broward County undergoing chemotherapy, how much of this stuff is being flushed down the sewer and then treated and either pumped back into the ground or discharged into the ocean? Remember, one way of tracing Covid-19 was testing sewer water of cities.

On a more cheerful note, I felt like doing a light cleaning of the house today and doing laundry. (Saturday is house cleaning day and laundry day). I still have to be careful not to put too much stress on the stitches, but I managed to put clean sheets on the bed and wash two loads of laundry as well as clean – a little bit.

I also finally finished identifying the majority of the plant photos I took on this trip. I took 504 photos and 31 videos while on the trip and, as usual, most of the photos are of plants. It’s not that I don’t like scenery, I just like finding plants better.

I identified 60 plant photos in three areas: Franklin Falls, Twin Falls, and Snoqualmie Falls. Of those 60, 20 were first time finds for me. I keep a spread sheet of all the plants I identify in all the different locations. Although there are numerous plants that are of the same species, I record them if they are in different locations of the country. I’ve recorded 1,924 species since my travels beginning in 2011 from 100 different locations. Add to that 672 species from Tishomingo State Park for my masters thesis and I’ve logged 2,596 species of plants for my lifetime list.

What has made life much easier for me, as I get older and forget most of my taxonomy has been my iPhone. The newer versions allow you to photograph a plant and click on the small “I” icon for information on the photo and it’ll list a plant option if it recognizes the plant. Click that option and it’ll “name” the plant for you. This past trip was the first time I used that option to any extent (thanks for letting me know, Jimmie!) and I found it to be amazingly accurate. There were only about 10 times the entire time that I doubted the name produced by Apple. I suspect that it is Artificial Intelligence in action.

Once I returned home, I broke out my Flora of North America, the online The Plant List, and the online Biota of North America Project to confirm the identifications. Also, don’t discount using the search engine Google and using their “images” option.

I intend, when time permits, to upload photos of the trip and plants of the trip on my website at http://fsearcy.com.

Stay tuned!

26 May 2023

A few days ago, my friend Barbara (Barbara I) texted and asked if I would like some take out from Jalisco’s, a local Mexican food place, the day of my port insertion, and if so, she would drop it off, or if I felt like it, join me for dinner. I texted back that was a great idea and would love to have her join me for dinner.

Between the procedure and the fentanyl, I didn’t remember after the procedure that she was coming over. She must have been psychic because she texted me again around 3 pm on the day of the procedure asking me what I wanted from the restaurant. Thank goodness she did. I looked up the menu online and I mentioned black beans and rice, plantains, and either chicken or pork as an entrée.

Jalisco’s has been in Fort Lauderdale forever. The outside is absolutely nondescript and I don’t think anything has been done to the building or interior prior to my arrival in 1985 nor since that date. The food was always good. It was standard practice to either eat at Jalisco’s first (so you could claim a space in the parking lot) and then go next door to a gay bar and have a beer, dance, etc. It was either that of risk being towed in the back alley and then going to Jalisco’s to rehydrate after all the beer and get a late night meal.

She showed up a little after 5:30 with two large bags of take out. Not only did she get the plantains and black beans and rice, but she got a huge container of chicken soup, their Pollo a la Plancha which is a grilled marinated chicken breast with onions but also their Bistec de Puerco a la Plancha which is their grilled marinated pork with onions. To top it off, she brought an individual serving of flan.

The chicken soup was outstanding. She even brought a special container or rice to add to it. We shared the Pollo a la Plancha (it was enough) along with the plantains. We each had our own serving of black beans and rice. It was delicious and a godsend. She repackaged the soup, rice, black beans and rice and the Bistec de Puerto a la Plancha and that’s my dinner tonight. I was still a little loopy from the anesthesia and I remember having a conversation with her after dinner, but don’t ask me about what.

As I kid, the first sleeping position I remember was on my belly with my head turned right on the pillow and my face to the wall. I shared the bedroom with my brother Archie and don’t believe a word he tells you about the stuffed blue French poodle named Pierre that I slept with. All lies.

When I moved to Fort Lauderdale in 1985, I learned afternoon naps in the summer after my teaching duties were over were a great way to recharge. Forget that my brother and I fought constantly with our mother who made us nap as kids. However, I found that I would drift off to sleep on my back and wake myself snoring. It was about that time I shifted to sleeping on my side.

My preferred position is to sleep on my right side – at least to first doze off. I shift back and forth from right to left and back again all during the night.

When bedtime came, the lidocaine was wearing off and I was worried I wouldn’t get any sleep. That wasn’t the problem. The problem was I couldn’t lie on my right side (the side of the port). I suspect that problem will go away once the port incisions heal but it was uncomfortable enough I had to sleep all night long on my left side.

The consequence was once I got up this morning, my entire life side: hips, ribs, shoulder, all ached. It’s still with me.

The ache from the port incisions abated a little today and I may try the right side tonight to give the left side some relief. Who knew major adjustments to the simplest things would have to be made from a little minor surgery?

Around noon my friend Barbra (Barbra II notice the spelling) texted and said she was bringing over some chicken soup (or as she calls it Jewish penicillin – she’s entitled, she’s Jewish, but then so is Barbara I who also called it Jewish penicillin). She had asked me via email several times if she could drop some off and today she was in Fort Lauderdale for a doctor’s appointment, and it was convenient for her. She brought over a huge container of frozen chicken soup with an additional frozen meal. I’m set for a while. I at least remembered most of the conversation with Barbra. I really do have great friends! Especially is their name is Barbara/Barbra!

Today is the first of three days I cannot bathe or shower or get my incisions wet. Fortunately, I have a solution. Over the years, I’ve learned that 90% of the national parks do not have showers for campers. I’ve learned to take “sponge” baths in the sinks of the men’s bathrooms. That gets old when it’s only cold water and the outside temperature is 20°F.

I eventually came across bath wipes sold by REI. I stocked up on them. I do, however, remember going into one particular REI store and asking for them and getting a blank look from the sales person. I did eventually find them on a shelf and went back to tell the person what they were and where to find them in his own store.

Since then, I order them from Amazon.

These things really work well. And since I haven’t camped in a national park in a while, I have a good stock of them in the house.

Amazon delivered two other things for me today. Ensure and Zensa’s Alert skin care cream with lidocaine. The lidocaine cream was a suggestion from a YouTube video of someone who had a port and was undergoing chemotherapy. Even though it is a port, it’s under the skin and you have to pierce the skin every time for infusions or blood draw and it has to be a very large needle. This one person recommended adding a lidocaine numbing cream to the surface of the skin where the port is located just before going in for your infusion and covering it with with Glad Press’nSeal to keep it from being rubbed off by clothing. When I got the port inserted and was in recovery, either Rosemary or Monique suggested the same thing so I’m going with it.

That process is remarkably like the bandage I have on now.

The RN for medical hematology told me during the chemotherapy consultation to try either Ensure or Boost or some such product. She didn’t specifically say I would lose my appetite after chemo but strongly suggested I lay in a store of the ones with the maximum amount of proteins. This makes since because the drugs attack the surface proteins of cells.

I did not realize there were so many varieties of this supplements. There are some that are for diabetics, some for those people who have gluten allergies, and this particular one was recommended for people undergoing cancer treatments. I could have gone with either Ensure, Boost or several other companies, but I liked the flavors offered with Ensure. I got creamy peach, French vanilla, strawberry, milk chocolate, mocha, and cherry cheesecake.

Part of the suggestion was that food would taste different after chemo and that I needed to eat and it was suggested to find what would taste good to me and stick with it and supplement it with an Ensure-like product. I think I’m ready for my first chemotherapy.

Stay tuned!

24 May 2023

The chemotherapy consultation was interesting in a few ways. The RN pretty much read me the information sheets. I could tell she was exhausted and several times she lost her train of through even though the printed information was in front of her.

The long and short of the consultation is the chemotherapy consent form has two outcomes: “Become free of my cancer with the hope that it will not return.” and “Slow the progression of my cancer, relieve my symptoms and help prevent future problems.” Fortunately for me, the first one was prechecked.

As I mentioned in a previous blog, I’ll be infused with four drugs, called the TCHP cocktail: Taxotere, Carboplatin, Transtuzunab (trade name Herceptin – that’s from where the “H”comes, and Perjeta.

The first two, Taxotere and Carboplatin are the heavy hitters and will have a great physical effect on me. Also, Transtuzunab does have a history of causing heart problems, including heart failure, hence the echocardiogram today.

After the first six sessions with the four drugs, I’ll do eight more with only Trastuzunab and Perjeta, both of which are monoclonal antibodies. The idea is monoclonal antibodies are produced in a lab from a specific type of white blood cell and are used to interact with surface antigens of other cells, viruses, etc. In essence, you make a factory out of white blood cell to manufacture monoclonals. I used to deal with them when in graduate school at the University of Mississippi Medical Center when I would attach fluorescein dye to the surface of catfish white blood cells.

More often than not, the four drugs cause similar side effects from fluid retention with weight gain, swelling of the ankles or abdominal areas, peripheral neuropathy, nausea, diarrhea, mouth sores, hair loss, fatigue and weakness, infection, muscle aches, vomiting, anemia and changes in nails and many others. The lists simply go on and on about the side effects.

All four cause diarrhea but in one case, a side effect on one of the drugs is also constipation. What the left hand gives away, the right hand takes.

Side effects are reported in terms of (1) common in 30% or more of the population and (2) common in less that 30% of the population. Additionally, the side effects are broken down into categories of (1) you should expect these side effects (2) you should notify your doctor when you have time with these side effects and (3) you should go immediately to the emergency room if you experience this.

Taxotere, in particular, has greater than 30% lowering of white blood cells (increases my risk of infection) and low red blood cells (anemia). According to the info sheet, I should have this effect 5-9 days after infusion and should recover in 21 days (just in time for another infusion).

Several of the drugs can cause allergic reactions and all allergenic reactions should send me to the emergency room.

The “falls into to notify your doctor” category for Taxotere is fever of 100.4°F or higher and/or chills, vomiting more than 4-5 times in a 24 hour period, or diarrhea of 4-6 episodes in a 24 hour period. There are a lot more but you get the gist. Oh yeah, I should definitely not try to get pregnant but that’s not gonna happen because I’ll be impotent during treatments.

Several of these drugs affect the liver and kidneys and they will do a blood test before each infusion to see if I’m OK to do the infusion. They’ll also monitor my blood for levels of K⁺and Mg⁺⁺.

For absolutely anything that goes wrong: mouth sores, diarrhea, infections, etc., they have a pill for it. Before each infusion they will give me anti-nausea medications and then after the infusion I’m to take the two prescribed anti-nausea medications every four hours on a rotating basis.

After the consultation I was waiting around for my 1:45 pm appointment for the echocardiogram. I kept getting phone calls during the consultation (I had my phone on vibrate) and when I checked who called, it was Holy Cross. The echocardiogram specialist had a cancellation and wanted to know if I was nearby. Yes, I was sitting outside the main entrance of the hospital. I was called in a little after 1 pm and was finished by my appointment time of 1:45. She kept asking me if I had an echocardiogram before and I kept saying no but when she started the procedure I realized I did have one in 1985.

While teaching at Itawamba Junior College (now Itawamba Community College), I was diagnosed with a prolapsing mitral valve. The main consequence was I had to take penicillin when I had my teeth cleaned. The reason was any bacteria in the mouth could invade the gums when the gums. bled during cleaning.

When I moved to Florida in 1985, I told my physician the diagnosis and he said the only way to confirm a prolapsing mitral valve was to do an echocardiogram. They did and I didn’t – have a prolapsing mitral valve. It was when she started the procedure that I remembered. I guess two echocardiograms in 38 years is not too bad. She mentioned that back in the 80’s that was over-diagnosed (she had been at Holy Cross since the 80’s).

Tomorrow, I go in for the insertion of the port. I asked the Breast Health Navigator if they would put me under with a general anesthetic and she said no, it would be a local. It should take, at most, an hour.

Stay tuned!

12 May 2023

The oncological team really throws a lot your way in one morning’s time.  Both Michel and I were a bit overwhelmed but I’ve had time to cogitate on what was said – and more importantly what was not said.  

The average life expectancy for the American male is 74.2 years according to an August 31, 2022 reporting by the Center for Disease Control (CDC), down from 74.5 and 77.28 in previous years.  I’m 74.  

Based on the stage of cancer (mine is stage 1), age (a negative for me), general health (a plus for me) and the treatment (mine seems to be the most current – for females) the five year survival rate is 82%.  If the cancer is restricted to the breast and hasn’t spread, then the five year survival rate is 95%.  If it has spread to a distant part of the body (through the lymph nodes), the five year survival rate is 19%. For some reason, cancer organizations and government agencies don’t seem to quote 10 year survival rates or greater.

You think you know what things mean until you start to ruminate over terms.  For example, on May 25th, I’ll go in for a chest port (actually more like upper chest near the neck port).  I’ve heard of ports before but didn’t really think about the procedure or how they work. In essence, they allow an easy access to draw blood or provide chemo infusions without having to undergo continuous needle sticks.  Remember, I’ll have infusions every three weeks for six sessions.  Then after a potential mastectomy, then I’ll have a year of additional infusions every three weeks.  I’d look like a pin cushion if they did needle sticks.  Chemo often degrades the veins in the arms and can cause collapse.  A port can be accessed again and again for several years.

The hard part, of course, is in installing the portal.  That’s a surgical procedure and depending on where you have it done, it’s either a local anesthetic at the site of insertion or they put you under.  I’m hoping for the “putting you under.“ You can get a pretty good idea of the procedure from a YouTube video.  I caution you that it’s pretty graphic.

The video above is a local anesthetic.  There’s a good deal of bleeding and apparently, it’s become routine for those doing the procedures.  I hope they are not as lackadaisical as it seems in the video.

One section of the video was interesting to me and recalled some situations with students dissecting specimens in my lab.  At one point in the video, they need to make a pocket under the skin to place the port.  You see the surgeon stick their (gloved) finger into the incision and begin the push and sweep, much like you do when you try to put seasonings under the skin of a chicken you are roasting.

When we would dissect specimens in my biology lab, students were very timid and reticent to be aggressive with their dissections.  Of course, this can lead to disaster in a dissection but there are times you need to be bold.  Students failed to realize how tough some of the tissues are in a specimen and I would have to show them they were not going to destroy tissue by being aggressive.  You can really pull and tear and rip on the human body and it’ll survive quite nicely.  

To understand how to use a port, there’s another YouTube video. 

As I was swimming laps yesterday (I better get that in while I can) it came to me I hadn’t thought about insurance.  You hear horror stories how families go bankrupt from cancer treatments.  

The chemo for me will require a drug cocktail of four very powerful and toxic drugs: Taxotere, Carboplatin, Herceptin and Petuzumab.  Fortunately, my Medicare will cover 75-80% of the costs associated with these drugs.  That leaves me on the hook for the other 15-20%.  One estimate is that for the initial sessions of chemo, the out-of-pocket costs could be $6000.  I have an AARP, United Health Care supplemental plan and I called yesterday to see if they would pick up the other 15-20%.  I was informed that as long as Medicare covered the 80%, they would cover the rest.  The drugs do not fall under the Medicare Part D plan for drugs, thankfully.  

The other big concern was the long term Tamoxifen costs.  I’ll probably be on that pill for 5 years or longer.  The good news is that 60 tablets of 10 mg runs around $18.37 with insurance.  

For years, I told people I would not submit myself to chemotherapy for any cancer.  You hear such horror stories.  Treatments seem to have improved.  Apparently, they give you anti-nausea medication before chemotherapy and provide you with a prescription for nausea after chemo sessions.  They also check you white blood cell count and can give you medication to boost wbc’s.  Otherwise, I would be susceptible to infections – not good in the age of COVID.

I’m willing to get started on chemo and see how it affects me.  I certainly think I can manage the first six sessions over 18 weeks if I don’t have any adverse reactions. I’m more concerned about the additional 17 sessions over a year’s time.  There is so much for me to consider.  Can chemo shrink the tumor?  Will I still need a mastectomy?  Can I cope with chemo and for how long?  You have to ask yourself the question that if you are already at the average life expectancy of the American male, how much you want to put up with for the potential (albeit excellent odds) for five more years of life.  Yes, I know many people have survival rates much longer than five years.  Five years is only the bookmark for cancer treatments.  It boils down to a quality of life issue.  For now, I’ll start the process.  

Stay tuned!