Yesterday was a nice interlude from all the craziness in my life but it was back to reality today. I’m tired from the trip to Miami (sounds like a journey of several days) and I did experience the dreaded diarrhea a couple of times last night.
Saturdays are my typical days to house clean (it’s hard to do with the construction going on) and wash day. Maybe I should say “house clean at-it.” Wash day hasn’t changed much since I was a kid and helped Grandma Searcy boil clothes in soapy water on an outdoor fire on Saturdays (I have her old wash pot). It still takes me two loads of clothes and I’m not sure what I dislike more – the washing or folding. At least I’m not outside tending a fire with a wash pot. And at least I’m not washing clothes on Sunday – a big sin in the South.
Years ago, before I got the stand alone generator, I anticipated the power going out and not being able to use the washing machine. I invested in a large wash tub and scrub board and clothesline with clothes pins. I still have the tub and scrub board but thankfully have never had to use it. That scrub board would have led to bleeding knuckles. I have used one in the past and it is no fun. If I remember correctly, it was Boy Scout camp and they didn’t have a washer for the staff who stayed over on weekends. I’m not sure I have the strength in my hands any more to scrub and wring out clothes like you would have to with a scrub board. These days, scrub boards are more appropriately musical instruments.
I texted the contractor this morning and asked if he would be able to at least finish the inside of the house before July 13. That’s the day of my surgery and I know after that I will not be able to do much about putting the house back together. I can’t imagine hanging curtains after the operation. He texted me back he thinks he should be through by this Wednesday. It’s tiresome with stuff out of place and having to clean around it. Not that once it’s done I’ll be more inspired to clean. He confessed someone’s house he was working on was having a birthday party and needed the construction finished and that’s why he hadn’t been back to my place. I fully understand. My project is probably peanuts compared to some of the other projects he’s faced with.
Next week I have my six month checkup with my endocrinologist. I’m sure that will go well with my bloodwork all over the place. You know its bad when the nurse calls you before you meet with the doctor to tell you about your bloodwork. After that, it’s the meeting on July 3rd with my new hematologist/oncologist. Let’s hope I don’t have to fire this one too.
I had a good night last night and didn’t have to get up once with diarrhea. Of course, that was probably due to the dosage of Lomotil and Imodium I took and I’ll probably be stopped up all day but that’s preferable to having to go every five minutes. Like I said before, take your victories where you can.
Northwest Exterminating showed up around 9 am and I showed the guy where the termites were discovered in the renovation of the east wall and below the window. The company uses a no-tenting technique where they drill into the wall board and squirt a gel that attracts termites. They take the gel back to the queen and it kills her.
Over the 28 years I’ve lived in the house, I’ve had the house tented for termites twice and it is quite an involved process where all food stuffs have to be removed and things packed in plastic bags. It’s kind of like an colonoscopy – the prep is the worst part. When they do tent, you have to stay somewhere else for two nights.
With this no-tent process, it’s no mess and no move out. I’m not sure how effective it is but it is sufficiently good that if you sell a house and you maintain the treatment, it’s enough for the sell of the house with a termite free certificate.
Next up was checking on my Lomotil prescription with CVS. The liquid form has to be ordered and I thought they ordered it. Apparently, it is still on order. Meanwhile, they have me under two separate profiles. That means I get notified under one profile when a prescription is ready but not the other. It also means that if I go to pick up a drug and they look under the wrong profile, they tell me the drug is not ready. I asked them to merge the profiles and was told no one in the pharmacy knew how to do that. They provided the corporate number.
When I called the corporate and finally got to a person, I was very quickly disabused of the notion that was their job. I was abruptly told that was the problem of the pharmacy and that was what the pharmacy’s help desk number was for. Back to my local CVS. They said it would be sent to their manager and handled.
My endocrinologist office called and wanted to know what the hell was wrong with my blood tests. Actually, the nurse for Dr. Jellinger, Farah, told me Dr. Jellinger thought it was due to chemotherapy (I told him about the cancer at an earlier visit) but she wanted to confirm I was undergoing chemo. I then related the convoluted story of the infusion, the emergency room, the hospitalization, and the diarrhea. She agreed with me 14 days after infusion was not a good sign. The endocrinologist blood draw was on the 19th of June, the infusion on the 5th and my white blood cells should have been closer to normal parameters.
In any case, she wanted to fax a copy of my blood work to the hematologist/oncologist. I explained there was a new one and I had fired the old one. Anyway, I provided the fax number this morning. My white blood cell count was through the roof. Then again, maybe that’s why I’m still fighting diarrhea.
Tomorrow I take my friend Tom to Miami at Jackson Memorial for a consult with a neurologist. One problem with getting old is most of your friends are old and you spend time trading taking people to doctor visits. The good news is we all have good days we can do that for each other.
Yesterday was a good day! As of this writing, no diarrhea (thank you Lomotil)! Not only did I make it to the credit union and filled the jeep up with diesel, I managed to rake leaves on the west side of the house where the mango is shedding so much, sweep the path, clean the pool filter, clean the patio, but also managed to kill weeds that were threatening to overgrow the house from all the rain.
This is a little misleading. Add in iguana poop, seeds of mangoes, half-eaten mangoes and tree branches and you get the idea.At least now I don’t slip on iguana poop and rotten mangoes.
My stamina held up pretty well until the very last. After the weed killing, I jumped in the pool for the first time since the end of May. I’m sure the water temp was in the 90’s from the hot afternoons. Even so, it was a refreshing dip.
Funny thing about cleaning the pool filter. It was exceptionally dirty since I haven’t cleaned it since June 5th. I use a water hose to clean the pleats and today the water pressure was only so-so. At times, usually the mornings, the water pressure is pretty good but sometimes in the afternoon, it is rather weak. I wonder if it has something to do with water usage? It was so weak I walked around to the front to check to see if the construction people had accidentally left the front hose running. It wasn’t that.
I wrote the above yesterday. That tends to be how I do these blogs. I start the day before posting, write a little, let it sit, then come back and review and then add anything new.
What’s new is around 1:30 am the diarrhea came back with a vengeance. I was up and down until around 8:30 am with episodes about every 15 minutes apart. I finally got it tamed with both a Lomotil and an Imodium. I still pretty weak from the episodes. It’s back to bananas, rice, applesauce, toast and tea. I had just gotten started back on a regular diet.
I would say there’s something more going on besides the chemo with my diarrhea but they performed a fecal occult blood test (to check for cancer and bleeding polyps) and also tested for Clostridium difficile (bacterium that can damage the large intestine) and both were negative. I can only lay it at the feet of the chemotherapy. Seems like 18 days is a little long for the symptoms to persist.
I canceled the afternoon’s dental appointment (cleaning). I dreaded the thought of being trapped in a dentist chair with the need to flee the room to find the bathroom. At least my bathroom is only steps away. The one in the dental office is down two long halls. I’d never make it in time.
Holy Cross called again this morning to see how I was doing. I mentioned the diarrhea and also that no one had sent the orders to my primary for me to get an x-ray and EKG. I’ll give it another day or two and then call the surgeon’s office and see what the hold up is. I can’t get them more than a week before surgery, so I have time.
With iffy digestive issues, I’ve decided to lay low for the day and stay in bed, read, and try to get enough nourishment and fluids to prevent dehydration.
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.
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.”
