Well, it’s settled. I’m scheduled for surgery on July 13th at 9 am. Again, communication. Dr. Burgers assured me she would know something about the date on Monday and her nurse called Monday morning with the news. My friend Holley suggests Dr. Burgers has so much empathy because she figures she has been through the process herself. That makes sense.
The Miami Herald had an article today about the scarcity of some cancer drugs. The reason is a company in India that manufactures the drugs has shut down after an FDA report of shredded quality control documents and of a worker pouring acid on test results. One of the two drugs was carboplatin, one of the four of which I was infused on June 5th. Makes you wonder what was in the infusion of carboplatin that had the company shredding quality control documents. Wonder if that’s why I am having so much trouble getting over my first infusion?
Speaking of Jim and Holley, they stopped by yesterday to bring me six Japanese rice meals that only need to be microwaved. She says they are so popular that faculty at the college want them when she brings them in for lunch. I tried one last night and almost finished the packet (there’s a lot of food in one packet).
I managed to dodge diarrhea last night and got a good night’s sleep. I even ate a regular breakfast this morning, giving the bananas a break. Coffee actually tastes like coffee and not instant Sanka.
After breakfast, I managed a short walk. I’m still not back to my usual stamina. This morning’s walk was around 0.9 miles. I usually walk a minimum of one mile and typically around 1.5. Not so sure about doing chores today since it’s already 82°F and humid with 100% change of rain scheduled for today.
With Tropical Storm Bret out there, it’s time to start a little preparation. I usually fill the jeep with diesel and get some cash from the bank in case electricity goes out and ATM’s are down. I’m pretty set for most hurricane supplies as that it a constant threat this time of year.
From the National Hurricane Center
It’s amazing how small the National Hurricane Center is. Michel and I toured it in April of 2022.
There’s not a whole lot more to the building than what you see.The heart of the prediction center.
My local credit union is about five miles from my house and it’s a new building. There were four tellers actively working the line and so I got to a teller fairly quickly. Then it stalled. Apparently the sum I wanted to withdraw from savings was above the amount authorized to that teller. She had to get permission and then there was the problem of the cash in the drawer. I’m sure everyone behind me in line was cussing me. This always happens to me at that credit union, even if I’m depositing money into my account. There always seems to be a reason someone has to clear it with someone else. I’d change but they offer free checking and otherwise do a decent job in comparison to banks.
No workers today. I guess they saw the 100% rain forecast. I do wish they could complete the inside work and allow me to get back that part of my life. I would love to get everything out of my living room and off my kitchen table.
It looks like I’m set up for a buffet!
Of course, I should admit the kitchen table collects junk even in the best of circumstances but this is unusual even for me.
I made my first unaccompanied outing today since June 5th. I drove the back roads to a blood draw on Stirling Road in order to avoid I-95. That road is iffy even when you are in peak condition.
Everyone tries to draw from my right arm until they see the surgery scar from my biceps tendon repair. I guess they are concerned some things may have been rearranged in that arm during surgery and immediately go to the left arm.
The problem is the left arm has had more than its share of punctures lately, to the point that I had an IV line in that arm for two days while in the hospital. I can almost hear the vein screaming “Not again!” I always offer up the port but that is always declined. I’m not sure if phlebotomists are not trained in port procedure or they don’t want to chance it. I assume the more the port is used, the more the chance of infection. I do know my left arm vein would like a little reprieve.
After the blood draw, I headed to CVS drive-thru for the Lomotil prescription. No go. The version I’ve been prescribed is liquid and they didn’t have it in stock and hadn’t ordered even though prescribed. Anyway, the lady at the window did order it and then informed me I had two prescriptions for lancets and test strips for my glucose available. I still seem to have two profiles in their system. She asked I wait 15 minutes and they would be ready for pickup.
I waited the 15 and then went back through the drive-thru and was told they didn’t have the lancets (that’s OK, I have a ton of them) but had the test strips. Previously, CVS told me the strips and lancets were no longer covered under Medicare and they charged me. Today, I was told no charge. On any given day you may be told anything at CVS which doesn’t hold the next time you go in.
As I headed back home, I stopped at a McDonalds and got their sausage McMuffin meal with coffee. Great news! The coffee now tastes like coffee! I ate the hash browns and approximately 1/2 of the McMuffin and considered that a victory over bananas, rice, applesauce, toast and tea. I also haven’t had diarrhea in the last 12 hours.
If my taste buds are coming back and my nose is healing and my diarrhea is moderating, maybe I’m finally getting all those damn chemicals out of my system from the first chemo.
Speaking of, I’m still listed for five more infusions. I called to cancel and found the person who is in charge of scheduling is out. I’m awaiting a call back from the person subbing for the person to cancel the infusions. As you might guess, the phone number listed to call for cancellation is the wrong one. Apparently, the new phone system hasn’t been changed on the web sites and apps.
I haven’t received any word from Dr. Burgers about a scheduled surgery but she did say it would probably not be until sometime today. I look forward to getting the surgery out of the way.
Even though yesterday morning almost killed me with the chores, I think that was the best thing I could do. I felt better yesterday afternoon than I have since the process began. I can feel my energy returning even if my stamina has not. I may even try to do a few more chores late this afternoon after it cools off a little. For the first time in a long time I feel emotionally better about the future. I also got a complete night of sleep last night and didn’t have to get out of bed once.
Chad, the contractor, texted and said they probably would not make it by today because of rain chances. They can’t pain outside nor finish the stucco until they get some good weather. That may be in October when rainy season is over.
It’ll be so strange not to have everything in my living room and kitchen cluttered with the contents of the pie safe and steamer trunk. Just think, I may actually have a normal life at some point.
I managed to make it through yesterday with only one episode of diarrhea. The Imodium is finally taking hold (pun intended). Of course, my pharmacy is closed today so I haven’t be able to get the Lomotil as yet. Even if I don’t need it now, I intend to get it because I will be undergoing more chemo one way or another.
This morning I attempted to do my Saturday chores. Friday chores got put on hold until whenever. I was too beat on Saturday to do Saturday chores and after doing them today, I understand why.
It took me a good 15 minutes to strip and make the bed. I had to rest between striping the sheets, rest after putting on the fitted sheet, rest after putting on the flat sheet, rest after putting the quilt on, rest after putting the comforter on and rest after putting pillow cases on.
From there it was putting dirty clothes in the wash – rest. Emptying small trash cans – rest. Replacing liners of trash cans – rest. Removing and shaking out small rugs – rest. Vacuuming the floors – rest and almost pass out. Mopping the floors – rest. Cleaning the bathroom basin and toilet – rest. Put everything back – pass out for two hours in bed.
This is absolutely the bare minimum of my cleaning. I usually do a lot more than that each Saturday and do a real deep clean on the 30th of the month. I have a messy house but at least I think it is usually a clean one. That, of course, went out the window with the construction from the flood.
I really need to do these things. I’ve got to build my strength and endurance for surgery (not yet scheduled). Thankfully, there’ll be a six week period after surgery to heal before I start new chemo.
I’m still on BRATT although I haven’t had any rice yet. I don’t have the energy to cook it and I don’t want to just eat plain rice. Cathy offered stuffed peppers and I know I can’t eat the pepper but maybe the flavored rice would be good.
My nose looks a little better and I managed to shave this morning and didn’t see that the rash looked any worse. I hadn’t showered in a few days and I admit to wasting water and luxuriating in the hot water on my skin.
Well, will wonders never cease? I had my very first night of complete sleep not interrupted with diarrhea! I was, however, prepared. Melinda brought me applesauce and BJ’s brand of Depends (Berkley/Jenson).
The way diarrhea was going, 84 would not be enough!
I got out of bed at 6 am, had some Rice Crispies with bananas and started my day. Stomach pains and nausea then hit and I headed to the toilet. Miracle of miracles, I had my first semi-solid stool moment. (I should have taken a photo – ugh, maybe not.)
I immediately went back to bed and slept until noon. I think it’s critical I catch up on my sleep. I did put some witch hazel on my face with all the rash. Here’s what my face looks like.
It looks as though I’m peeling from sunburn.
I met with the oncology surgeon Dr. Burgers yesterday. Jim was kind enough to take me in and even stop for some shopping before taking me home. I made a decision about the chemo.
After explaining everything to Dr. Burgers, I asked about the option of surgery first and chemo later. She was open to the idea and agreed to hear me out. After some questioning of her, I realized that instead of 14 chemo treatments before surgery, there would only be 6 chemo treatments after surgery and that the treatments would probably entail only two of the four drugs: Taxotere and Perjeta. She also said that since I already had one chemo session, I may only need five chemo treatments.
I would probably have check up appointments 2 weeks after surgery, then one month after surgery, then every six months for around 5 years. After that, probably yearly visits for the foreseeable future. I’m sure I’ll also be on tamoxifen for five years.
She did an ultrasound and the tumor shrunk from 2 cm to 1.6 cm with just one chemo session. I simply told her I didn’t have it in me to do 13 more sessions. She understood and said she was working on a case with Dr. Velez that was the very same as my situation. She also said she understood I did not hit it off with Dr. Arnaout and she thought Dr. Velez was a better fit for me.
Dr. Burgers also mentioned there are more new protocols that are coming out they are looking at and I might fit into one or more of those with even more reduced chemo to only target the HER2 cells.
She likes to schedule surgery 3 weeks out from the last chemo, so that would put me the 26th of June or the 3rd of July, but it all depends on her calendar. I should know the surgery date by Monday.
Kathy also scheduled a meeting with me and Dr. Velez for July 3 at 2 pm to introduce myself and listen to his plan for after surgery chemo. She also brought up BRATT as did my cousin Jimmie: bananas, rice, apple sauce, toast and tea. That helps fight diarrhea.
My big concern was diarrhea and the effects the dehydration has on my kidneys and my heart. We discussed the possibility of Lomotil as a possibility as opposed to Imodium which doesn’t seem to be working even at double doses.
Jim took me to Publix and I got everything except applesauce. I may have some around the house but the stuff has probably expired. I’ll get some of that tomorrow.
Check the applesauce. My neighbor Chris brought over four individual servings and as I mentioned earlier, Melinda brought 3 large containers from BJ’s. Also Cathy, Nicole, Mary Kay, Barbara K, and John all volunteered to bring over some. Cathy volunteered to cook me meals but in reality, I’m sticking with the BRATT diet for now. And sleeping.
Just to show you how good a doctor Dr. Burgers is, she called me at home (not her job) yesterday and explained she had consulted with Dr. Velez (not her job) and had agreed that I could take Imodium every four hours and she wrote a prescription (again not her job) for Lomotil which I could take in conjunction with Imodium, every six hours. Then she explained Dr. Velez would work to get me in sooner than July 3 for a consultation (again, not her job). This woman cares about her patients!
I think today will be eat the BRATT diet and sleep and more sleep. We are in heat warnings and storm warnings today all day.
I got some good news yesterday. The final part of the genetics testing came back (even though their web site and phone system crashed). I was negative for 82 additional gene markers for cancer. Of course, they place caveats everywhere saying it didn’t mean I still couldn’t get those type of cancers but at least, by their determination, I was not predisposed for them.
That was about the only good news. Diarrhea returned with a vengeance. It finally calmed down early this morning around 3 am. I finally got to sleep and have gone 4 hours without any bouts until almost 9 am.
I did manage to get a 5 Guys hamburger for the price of $30 (included a tip for the UberEats driver. He didn’t speak English and kept asking me for the last four digits to complete the order. I assumed he meant SSN and that threw me. Why would a burger place or Uber need to know that. Finally, I understood he meant phone number. I said 8903. Mental fog. Then he thought to try a pin. Didn’t have one. Finally, his wife who spoke English, who was riding with him, came out and we finally sussed out the correct phone number for me. By then the fries were cold and the order wasn’t quite correct but I managed to eat 3/4 of the burger which I count as my first real solid food in a few days.
Kathy at Biennes Oncology called and explained Dr. Burgers (the surgeon) has some time available at 3 pm today. I’m too weak to drive but I plan to get someone to take me and go in with me and provide an extra set of ears. I asked Kathy to discuss with Dr. Burgers whether to readdress the surgery. I just don’t know how my body can possibly take another round of chemo right now (June 26th).
Chad, the contractor texted and said he planned to have someone over today to start the stucco. He’s lining up painters to finish the exterior and interior paint jobs and he seems eager to get my little piddly job finished. I would love to have my house back to normal. It’s probably only for a short time. Pensacola reported 10 inches of rain in a little over an hour. It looks as though these flash flood events are to be a permanent factor in Florida.
It’s mango season in south Florida and I can’t eat any because of the diarrhea. It’s killing me. My neighbor’s tree which hangs over my yard produces the best mangoes I’ve ever eaten. The fruit is quite beautiful and rather large for a mango. I usually save as many as I can and freeze them later for mango sorbet.
However, I just haven’t had the energy and have to watch the iguanas feast on them.
Black Spiny-tail Iguana enjoying breakfast.
Some people can’t eat them. Mangoes belong to the same family of plants(Anacardiaceae) as poison ivy, poison oak and poison sumac. If you are susceptible to those, the leaves, flowers, sap and peel of the fruit can cause anaphylaxis. Fortunately, I can handle them and eat them. Ironically, my neighbor next door, whose tree it is, cannot touch them.
As soon as I know something from my conversation with Dr. Burgers, I’ll be back with an update.
Yesterday, I was leery of driving anywhere so I asked Barb if she would mind running to CVS and picking up a couple of prescriptions for me. She said she would be delighted. Previously, I called CVS and asked about prescriptions from Holy Cross. The pharmacist who answered said two were ready and one was due in later that day. I asked if it would be possible for a friend to pick up and she said “Of course!”
Barb showed up at the house (in the rain) and I gave her my drivers license and credit card and very shortly she returned. (She had tried to text me but I didn’t see or hear the text arrive.) The drive through said that no prescriptions for me were available.
After a second phone call to CVS, the pharmacist said the reason was the person on the window didn’t know I had two entries in their system (neither did I). Barb dutifully returned to CVS and eventually returned with three prescriptions. Apparently the third made it in from wherever.
People are still checking on me by calling, texting, emailing or coming over. It’s really humbling to know I have such good friends.
Last night was also humbling. Diarrhea returned but at least a little more moderately. Since yesterday and including this morning, I’ve had seven episodes and none of those were as bad as the Sunday night before I was taken to the emergency room.
I did manage some Raisin Bran cereal this morning and since my coffee tasted so horrible yesterday, I managed a cup of breakfast tea. Then I went back to bed and actually slept a little more. I just downed a bottle of GatorAde and I’ve found I can drink iced tea fairly easily. My appetite is still very iffy. What’s strange is I’ll think of a food and think “God no!” and then think of another and think, “Yea, I think I can do that.” For some strange reason, I think I could eat a hamburger from 5 Guys. I do the basic: single patty, light mustard, pickle and onion. Why I think that is a possibility, I don’t know.
My sleep patterns are all over the place since I have to wake up and run to the toilet with diarrhea. Hopefully, the dire rear will calm down and I can get more uninterrupted sleep.
I got news today that my second set of genetics tests are complete from Invitae. However, when I log in, the system stalls and I cannot access the tests. I have to admit I’m curious to see if there are any other genetic markers for cancer in my genes. I sent them an email asking for help and am awaiting some reply from the company.
I’m playing a waiting game with Holy Cross Oncology. Kathy is trying to see if she can find me another hematology oncologist who is willing to work with me and also discuss with Dr. Burgers if surgery first is still an option and if so, what are the benefits over chemo first.
South Florida is in the middle of its rainy season and so we can pretty much expect to see afternoon showers every day. We have heat warnings out and I can image anyone with an outside job are not enjoying their summer at the moment.
My new toothpaste is very expensive and very exclusive. My regular toothpaste burned my mouth. The new one is baking soda and enough coconut oil to make a paste. Every time I go to the dentist these days, the final step is to blow a solution of baking soda into and around my gums and teeth.
Ruby, my grandmother, never had a cavity until she was in her late 50’s. She always brushed her teeth with a mixture of baking soda and salt. After a while, I started using it until I realized actual toothpaste was a little nicer to brush with. I’m of the age that fluoride had not been added and as a result I had a ton of cavities as a kid. Dental practices back then were little more evolved that the days of the Wild West and Doc Holliday.
One practice mother took me to did a major block of the nerves by a direct injection of novocaine directly into the hard palate. That was utter misery. Only much later did dentists start blocking specific nerves with their injections.
Speaking of fluoride, when I was in library science school at Florida State University, one of my teachers was the one to research fluoride in toothpaste for the federal government. As you know, there was great controversy over the inclusion of fluoride. It was a communist plot, etc. My professor was the one that researched all the clinical trials and allowed toothpaste companies to refute the nut-case claims on fluoride. Of course, when fluoridation became common place, the incidence of dental caries dropped precipitously .
My dental health improved significantly after my freshman year at Ole Miss. I attribute this to stopping my childhood diet of cokes and potato chips and eating a more balanced diet at the university cafeteria.
When I went into the military, the Coast Guard removed and replaced every filing in my head (and trust me, there were a lot of them). Strangely, they did not remove any wisdom teeth although that was a common practice back then. They didn’t want sailors to be at sea and have impacted wisdom teeth. After leaving the CG, I went to graduate school at Ole Miss and the local dentist informed me I did, indeed, have wisdom teeth and they had become impacted.
I’d heard horror stories (and seen a few in the CG) about wisdom teeth removal but this guy simply used a probe to roll them out. There was little to no bleeding and I never had to take any pain medication. At least that went right and was payback for all the pain I suffered at the hands of dentists as a kid.
I eagerly await the outcomes of this afternoon and night’s diarrhea bouts.
I’m ecstatic today! I had the first solid stool in at least six days! Take your victories where you can get them.
As you know, I’ve been absent on the blog for a few days. I was scheduled to go into the oncology unit for some type of infusion and magnesium treatment on the 12th. I didn’t make it. I waited until 6 am and called Joel and told him there was a change in plans; I wanted to go to the emergency room at Holy Cross. We arrived a little after 7 am.
Dr. Vega pretty much saw me immediately since there was only one other person in the ER when I got there. He asked pertinent questions and two nurses: Victoria and Christina took very good care of me. I listed my symptoms for Dr. Vega which included diarrhea to the point of every five minutes the last few hours. They immediately ordered blood work, a chest x-ray, and an EKG. The EKG came back abnormal with a left axis deviation which means the electrical conduction is not normal. They promptly admitted me to the fifth floor for observation. My troponin level was high and that indicated I might have had a heart attack. Fortunately, a retest later indicated the level had dropped.
Before they took me up, two women associated with the oncology center popped in. They were making rounds and saw my name on the ER list. They were a little astounded that (1) I had no idea as to what the scheduled infusion for that day meant (2) that I had tried to call and cancel and had been cut off or hung up on (3) and that I was upset with the hematology oncologist. I wasn’t very pleasant to them and before you get upset, I did apologize to one and asked her to forward my apology to her colleague two days later.
From there, the results of the blood test indicated some obvious signs of chemotherapy (high white blood cell count, high monocyte count) but also indicated acute kidney injury (probably due to the dehydration from diarrhea) with low sodium and magnesium levels. They began to give me an IV with saline, magnesium, and also zorfran for nausea and Imodium for the diarrhea. I was a sick puppy.
My nurse was Edwin and he took very good care of me. I had a private room with bath. Within 30 minutes, two physicians had been to see me. One was actually an oncologist making rounds from the Biennes Oncology Center.
The rest of that day was spent either being poked, prodded, injected, or in the bathroom with nausea and diarrhea. I had my first ever injection of insulin. I had not brought my medications with me and they would not give me metformin for my diabetes (high levels of metformin can cause diarrhea). My sugar was really wacko. I think it one time jumped to 167. My blood pressure was very low. At one time it was 111 over 57. The systolic was as low as 99 at one time.
They did stool samples (poor nurse) and put a heart monitor on me. Later, one of the oncology representatives mentioned my stool was the talk of the floor for its nastiness.
Since it was Monday, I managed to call Kathy, the Nurse Navigator at the Biennes Oncology Center and explain what happened and that I was definitely not happy. I asked about all the extra infusion dates and eventually she told me I didn’t have to attend any of those if I felt they were not needed – the hematology/oncology department never mentioned this. I explained the difficulty I had contacting the Biennes Oncology Center over the weekend. When ever I called a number, it would tell you “press 1 if… press 2 if…. When I pressed any number, it either hung up on me or kept rattling off numbers and then hanging up. Their all-hour number seemed to not work either. They had just changed to a new phone system and were a little taken aback that I couldn’t reach them.
I also informed her I was not happy with my current hematologist/oncologist and wanted to change. We discussed options and we are still working to see if two of the four on staff will be willing to take my case. I told her under no circumstances did I wish to talk with my current one. I asked her to consult with Dr. Burgers to see if surgery first and chemo second was still an option.
Later Carrie, the Clinical Nurse Manager called and tried to mollify me. She was also stunned about the phone system. I also strongly indicated that I did not want to talk to the hematology oncologist. Can you see where this is heading?
I told both Kathy and Carrie I thought it interesting that after my first chemo on June 5th where they were constantly concerned about my reactions to the drugs that no one thought it necessary to call the patient during the week or weekend to see how they were fairing. Both thought this was something that wasn’t done. I didn’t mention that the oncology surgeon and the one who performed my biopsy, while at a conference, called me and spoke with me for over 30 minutes reporting the results of the biopsy and talking me through issues, all on her time.
Sure enough, while Edwin was putting up a new IV bag and magnesium bag, guess who walks into my room? He was trying to apologize but just could not get the words out. He explained that the infusion scheduled for today was simply to check for dehydration (I had eventually figured that out). I then pointed out that would have been nice to know before their app asked me to fill out a questionnaire and then directed me to scheduled visits where he had assigned me 52 visits and his nurse had added 66 more for a total of 118 – on top of the original 14 chemo infusions. None of this was ever mentioned to me.
His response was he didn’t do that, that was the fault of his staff. I have never met anyone yet in any position of responsibility that will automatically allow staff to do anything without their approval first. He was already in dangerous waters at the time and then he jumped into the deep end. He then asked me if I knew the definition of infusion.
I not so politely informed him I had two masters degrees and 42 hours toward a PhD in microbiology and I certainly did know the definition of infusion. It also has a context associated. Is it an herbal infusion, chemo infusion, and infusion of pride? He asked repeatedly if I would meet with him and I repeatedly told him no, I was not going to ever see him again. I finally had to ask him to leave. I later apologized to Edwin for my behavior and that he had to be exposed to that scene.
What was really strange was that representatives of oncology kept appearing on my floor. In reality, the physician in charge of my case at the hospital didn’t sign me out – it was the oncology representative. It’s like the oncology group hold sway over the entire hospital.
To make a long story longer, the diagnosis was the chemo led to diarrhea which lead to kidney damage, which led to my hospitalization. I’m on prescription Imodium, and prescription anti-nausea drugs, and can maintain my current diet sans fresh fruit and vegetables. I’m still in negotiation with the Biennes Center for a new hemology oncologist. Biennes is checking into their phone system and I have an appointment for the second chemo infusion on June 29th.
I ordered from Publix today (ugh!) but they at least had what I needed. It’s quite a search to find something I will eat. I bought cereal and oatmeal and some frozen protein. The delivery guy got out of his car reeking of weed and even the grocery bags smelled up my house. Maybe that’s what I need for the nausea.
When Joel dropped me home, I immediately took a shower – my first in three days. I noticed that my nose was rough to the touch and then noticed I can add another side effect to chemotherapy.
The rash is on the nose, most of the face and my bald head!
I decided what I needed was some soothing lotion. I grabbed my trusty Nivea bottle and added it then and once later in the night. Later that morning, I realized I had rubbed shower gel all over my face, not body lotion. I corrected my error later that morning.
I went to bed last night at 6:30 pm, got up at 2:30 am, had breakfast, and went back to bed at 3:30 and slept until 8:30. I suspect it’ll take me a couple of days to get my routine back.
A word about Holy Cross. I’ve mentioned before that Holy Cross and Hollywood Memorial on Johnson Street are the best hospitals in the area. Holy Cross’ emergency room is great. My private room was great and the nursing staff were outstanding. At Holy Cross, you are provided a menu of meals and you call down to get your meal. If you don’t call, they call you. They enter your name in the computer and it tells the your assigned diet: low carb, low fiber, vegetarian, etc. If you order something that goes over your assigned number of grams, you order something else that puts you back in line. They bring you the tray almost immediately. That’s service. It’s hospital food but I will say it is a cut above average.
I’ve taken people to ER’s before but only once before for me. Holy Cross’ ER is a level 2 trauma center but I think it could easily make level 1. I suspect they are not interested in becoming a level 1.
Check out was easy. From the time the oncology doctor released me to my being wheeled down was probably 15 minutes. Yuri, my nurse, brought me the paper work and I didn’t have to sign anything. The wheel chair was brought within minutes. Everyone at Holy Cross, including the lowest paid staff would say hello to you, ask how you are doing, and wish you well. That’s how hospitals should be run.
I’ll be honest and say that periodically I tear up around people these days. It’s not about the cancer diagnosis. That doesn’t bother me. What makes me tear up is how everyone has jumped in to help me in every way possible from bringing me food, shopping for me, carrying me to and from appointments, and checking on me daily or weekly. I truly have some great friends. Much of my life I have felt as though no one cared about me. I have been disabused of that notion now.
Speaking of friends, Jim and Holley just returned from their European vacation and when they knew I had been admitted to the hospital, they dropped by (I can imagine they were still jet lagged). They brought gifts.
Pride bar from Iceland!This is one of Holley’s favorites.Jim chided her that her’s didn’t have chocolate so she bought me a chocolate version.One of their stops was Norway and apparently gnomes are big in Norway. This is a pill box.Their last stop before flying back was London. This key ring is a multi-tool: nail clipper and bottle opener. Those crafty Brits.
I, at least, got some sleep last night. I tossed and turned the night before in anger with Holy Cross. I must have slept another 12 hours last night. I thought I had a handle on the diarrhea but I was disabused of that notion soon after I got out of bed. Along with the diarrhea came an outbreak of my hemorrhoids. Life just keeps getting better and better.
I finally broke down and asked someone to take me in to Holy Cross tomorrow. The diarrhea has made me so weak, I’m afraid to drive myself in. Joel immediately volunteered. He was having breakfast with Barbara and she soon asked if I needed anything and would I like some rice and beans fro Jalisco’s. I said yes. I need some kind of solid food. I may not be able to eat it but I need to try.
Chris brought over some saltine crackers. She’ll pick up more tomorrow. Saltines kept me alive in the Coast Guard when we were out to sea under bad weather conditions. It at least gave you something to throw up when you were sea sick.
I have no idea what tomorrow brings – Holy Cross is not very forthcoming. I intend to raise as much hell as possible with the way this situation was handled with the extra scheduling or whatever it is they are doing. I also intend to ask for something for my throat and a new diarrhea medicine since Imodium doesn’t seem to be doing the trick. I’m having trouble swallowing pills with my throat issue.
I don’t feel great this morning but the main thing is I’m so weak. I’ll try to write more later if I feel better, otherwise, I’ll try to post something tomorrow after my “treatment.”
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.
Yesterday was better than the day before. The day before wiped me out and even after 12 hours of sleep, I was pretty lethargic. I really don’t have an appetite but I force myself to eat something and always back it up with an Ensure.
I now know what they mean by joint pain associated with chemotherapy. I went to bed last night around 8:30 pm and around midnight I waked with joint pain in every conceivable joint in my body. It was like someone was stabbing me in the joints. Around 1 am I took a couple of Advils and it mitigated it somewhat and over the night the pain abated. Strangely, when I got up this morning, the pain was gone.
On a brighter note, Eric and Jose showed up yesterday. Eric was making a supply list of what is needed to complete the job and Jose put a primer coat on the drywall in the vestibule. There’s still a lot to do: stucco the outside wall, paint the drywall (I chose the color celery for the vestibule), frame the jamb of the front door, put in baseboard, wash and seal the tile floor, paint the paneling outside the house, clear out the utility room, spray fungicide, and put down either indoor/outdoor carpet or water resistant linoleum. Once they put everything back in the utility room, that will pretty much be it.
It was April 12, 2023 that we had the massive flood in Fort Lauderdale, so if they finish up by the middle or June, three months is not bad for getting everything repaired.
Jimmie and I, on our Sunday FaceTimes, love to reminisce about our childhood. One thing that stuck out to both of us was my Dad making what he called an army tank but what most people call a tractor. I found a video on YouTube on how to do it (I long ago forgot how to do it). I do know that instead of an end of a candle, we used a piece of crayon with the paper removed. You need something that will “grease” the way past the wooden spool and candle wax or the wax of crayons is perfect. The big problem is to find a wooden thread spool these days. I did find one and made one that worked OK. Dad was a master at it.
We were fascinated he could do this with such simple materials and we had a lot of fun “racing” tanks and having them climb over things. When we were kids, there wasn’t a lot of money and you entertained yourself – like build tree houses, blow up crawfish holes, eat Aunt Eddy’s King Leo peppermint sticks, and make toy tanks. Then there was trying to outrun Mrs. McCoys bull in the pasture.
Some of the simplest toys brought the greatest pleasure. At Chadwick’s 5 and dime, you could by a tin click beetle (pained on top to look like a beetle) that underneath had a spring you bent back into some tar. When you placed the beetle on a surface, eventually the tar would give way and the click beetle would flip into the air and hopefully startle someone you were trying to trick. It was only later that I learned there really are things called click beetles and they really do flip in the air to escape predators.
.
Another favorite toy was the gyroscope. This was in the late 50’s and early 60’s and I suppose the space race was going on then. You wound the string around the central column in the gyroscope and you could balance it on a string strung between two supports or balance it on your finger.
Then there was the famous slinky. My cousin Jimmie had one and she had what seemed like a hundred steps from the ground to the second floor of her house. We spent hours letting the slinky “crawl” down the steps.
Her Dad mad walking stilts. There were two sizes: stilts about 1 foot off the ground and another set that seemed 3 feet off the ground (we were kids so they could have been much shorter). To get on the tall ones, you had to prop yourself up on some lower stairs at her house and lean into the arm pieces of the stilts and hope your feet hit the stirrups. As you fell forward you would have to catch your balance or you keep falling forward.
Anyone remember roller skates with a key? Jimmie and her sisters had them and it was always hard to get the key to turn the clamps to your shoes hard enough. You could adjust the length of the skate as well as tighten the clasps to your shoes.
Image from EBay.com
That memory made one of Melody’s songs my favorite, “Brand New Key.” It’s more than slightly dirty if you listen to the lyrics. Every time I played that song I thought of roller skating.
Where I grew up (Morton, Mississippi) a lot of the schools in the outlying areas closed and consolidated with Morton Attendance Center. That left a lot of empty school buildings, auditoriums, and gymnasiums. The gyms were often turned into roller rinks and we would beg either Mom or Aunt Mable to drive us to the rinks for a night of skating.
I’m sure I’ll have more nostalgic rants before too long.
