I had an oncologist appointment today. It didn’t last long. All that was scheduled was some bloodwork and a shot to help increase the production of my red blood cells.
The whole visit only lasted about thirty minutes.
As I was leaving the office, I found myself walking behind two elderly women. It looked to be a mother and daughter. The mother was using a cane and appeared to be having just as much trouble walking as I was.
I wasn’t in a hurry, so I stayed behind them as we made our way to the elevator. The three of us rode down to the first floor and then slowly walked down the corridor past the ER entrance and toward the parking deck payment kiosk.
The daughter scanned her parking ticket and tried to pay the $4 fee with four one-dollar bills.
The machine refused to take her money.
She tried several times, but the kiosk never gave her any option other than paying with a card.
By then, several more people had crowded into the small payment area. I could tell the daughter was becoming frustrated and embarrassed. She looked over at me and motioned for me to go ahead and pay for mine first.
After I paid for my parking, I turned to her and asked if she would hand me her ticket.
I scanned it and paid for their parking.
At first, both the mother and daughter looked confused and uncertain about what I was doing. But when I handed her the receipt, they realized what had happened. The expressions on their faces immediately changed to relief and gratitude. I think they were genuinely worried about how they were going to get out of the parking deck.
Truthfully, I was just going to quietly pay for it and leave without saying another word. But the daughter insisted on paying me back the four dollars.
And honestly, THIS is the person I usually am.
This is how I was raised.
I don’t care what color you are, what political party you belong to, whether you’re young or old, rich or poor — if I see someone struggling and I’m able to help, I’ll do what I can.
I follow a blogger on this platform whose husband and she are both living on Social Security. Between insurance costs and medications, they barely have enough left over for groceries. Recently, she asked if anyone could help.
I don’t get paid until later this week, but as soon as I do, I plan on sending them a little something.
Not because I have plenty.
Not because I’m trying to impress anyone.
But because I know what it feels like to need help.
I enjoy helping people. And to be honest, I especially love helping when people don’t even know where the help came from.
Sometimes the world feels angry, divided, and selfish.
This morning at church, it was all I could do just to sit there and make it through the service. I’m pretty sure I shifted positions more than a kid in a hard wooden pew for the first time. But I made it.
After church, I managed to go to lunch with my girls, which was worth pushing through the discomfort. My son was out of town, so I didn’t get to see him today, which was a little disappointing—but I’ll catch him next time.
After that, it was straight home.
Pain pill. Recliner. Heating pad on high.
(Shocking, I know.)
I did finally hear back from my doctor yesterday, and she gave me the rundown on my back. Turns out, there’s some pretty serious stuff going on in there. Not exactly the kind of “surprise” you’re hoping for. She’s referred me to an orthopedic doctor to talk about pain management injections and figure out what the next steps look like.
Here’s the ironic part—it’s in the same office as my Charcot doctor. At this point, I’m thinking about just asking if they offer a rewards program. Maybe after a certain number of visits, you get a free coffee or something.
Of course, scheduling the appointment isn’t as simple as picking up the phone like a normal human being. Nope. Everything has to be done online now. I had to fill out all my information just so they can call me… to set up an appointment.
So basically, I did all the work… just to wait.
Sometimes technology doesn’t make things easier—it just makes them take longer in a more complicated way. I’d much rather just call, talk to a real person, and get it handled in five minutes instead of playing this back-and-forth waiting game.
As for tomorrow, those plans are officially cancelled. I was supposed to head to the shop and do some woodworking to get ready for my next show, but there’s no way that’s happening. Right now, the only thing I’m building is a deeper relationship with this recliner.
I’m hoping I can at least make it through Tuesday.
I’ve got Bible study in the morning, an appointment with my oncologist in the afternoon, and my last CERT class that night—which includes a written test. Then Saturday is the big drill where we’re supposed to be tested on everything we’ve learned over the past eight weeks… including the physical stuff.
So yeah… no pressure.
At this point, I’m just hoping to feel human again by then.
Until I can get back on my feet, I’ll probably spend some time looking up new woodworking plans. If I can’t build anything right now, I might as well plan what I’m going to build when I can.
Other than Tuesday, it looks like me and this recliner are going to be spending a lot of quality time together until I hear from the orthopedic doctor.
My nephrologist called me the other day to reschedule my appointment. Apparently, the hospital had a flood on the top floor, and their offices were flooded as well. Because when you’re already dealing with kidney issues, why not throw in some surprise indoor rain?
As a result, they had to temporarily move their offices to one of their satellite locations in a nearby city. The day before my appointment, they called again and asked if we could just do a teleconference instead. Same time, same doctor, no driving, and no pants required from the waist down—absolutely.
My lab work had already been done a couple of weeks earlier, and because I like to mentally prepare myself for either good news or emotional damage, I had my results emailed directly to me. Now, I’m not a doctor, and I don’t pretend to understand every number on those reports, but there are a few that I follow very closely.
First up is eGFR, or estimated Glomerular Filtration Rate. This number tells you how well your kidneys are filtering your blood. A normal range is between 90 and 120—numbers I personally haven’t seen in a while and would probably frame if they ever showed up again.
60–89 is Stage 2 kidney disease
45–59 is Stage 3a
30–44 is Stage 3b
15–29 is Stage 4
Below 15 means kidney failure, and dialysis becomes a very real conversation
Then there’s Creatinine, a waste product filtered by the kidneys. In simple terms, the higher the number, the worse things are working. Think of it as your kidneys’ performance review—lower is better.
The last big number I keep an eye on is hemoglobin, the protein responsible for carrying oxygen throughout your body. This one has a direct impact on how much energy I have, which explains why some days I feel like I could conquer the world, and other days I need a nap after tying my shoes. Normal range is 13.2-17.1
So here are the numbers I focus on:
eGFR: 35
Creatinine: 2.09
Hemoglobin: 10.5
Now yes, an eGFR of 35 doesn’t exactly scream “picture of perfect health,” but context is everything. Last year, that number was 14. At that point, my doctor was already talking about my next visit being with a dialysis specialist. That’s not a meeting you look forward to.
So going from 14 to 35? I’ll call that a solid upgrade.
My creatinine also improved significantly—from 4.29 last year down to just over 2. Another small victory, but I’ll gladly stack those wins wherever I can get them.
Hemoglobin, however, continues to do whatever it wants. It fluctuates so much that I regularly need iron infusions. My oncologist thinks it’s related to my kidney function, while my nephrologist believes it’s tied to the chemo drug I’m on. At this point, I feel like the two of them should arm wrestle, and whoever wins gets to be right.
When the call wrapped up, my nephrologist said she was happy with where things are. She even used the word “stable.”
And if you’ve never dealt with chronic illness, “stable” might sound underwhelming. But when you live in this world, stable is a beautiful word.
Stable means no dialysis—for now. Stable means nothing is getting worse. Stable means today is better than last year.
So yeah, I’ll take stable. No complaints. And preferably without any more floods—indoor or otherwise.
It’s hard to believe, but I’m coming up on my 12th anniversary of being diagnosed with CML (Chronic Myeloid Leukemia). My most recent lab work showed my cancer as undetected—which is always good news… with an asterisk. In my case, “undetected” can be a little sneaky. It can be undetected on one visit and pop back out of range on the next. I wish I could tell you why there’s such a swing, but I don’t do anything differently from month to month. Same diet. Same routine. Same bad jokes. The only thing that really changes is what the numbers decide to do.
I will never forget the day I found out. Or the days leading up to it.
I had gone in for a routine six-month checkup when my GP called and asked me to come back in for more lab work because something looked “off.” Then on February 14, 2014—Valentine’s Day—my wife and I were getting ready to meet one of my daughter’s newest boyfriends. He was coming to pick her up for a high school date, and I was in the important stage of fatherhood known as trying to find the right words to mildly terrify a teenage boy.
That’s when my phone rang.
Keep in mind, this was late on a Friday afternoon, when most doctors’ offices are already mentally in their cars. The nurse told me my white blood cell count was extremely high and that they wanted me to see an oncologist.
At that moment, I had never heard the word “oncologist.” I didn’t know what kind of doctor that was.
During the phone call, my wife quietly looked it up and said, “Tim… that’s a cancer doctor.”
Needless to say, my carefully rehearsed intimidation speech for my daughter’s boyfriend completely left the building.
My appointment was scheduled for the following Tuesday at 10 a.m., which made that weekend the longest weekend of my life. A thousand scenarios ran through my head. I didn’t sleep much. I just wanted Tuesday to get there so I could talk to someone who actually knew what was going on.
Tuesday morning arrived with snow and ice. I kept calling the office. No answer. The hospital sat on top of a steep hill, and the road was iced over. No one was going up it, including me.
Later that day, the temperatures rose, someone finally answered, and my appointment was moved to 2 p.m.
I’ll never forget meeting my oncologist. He made a lasting impression. My wife decided that day she didn’t like him from the start.
I had a thousand questions loaded and ready. I opened my mouth to ask the first one. He held up a finger and said, “I’m talking. When I’m done, I’ll answer your questions.”
And just like that, I realized I was not in charge anymore.
He’s an older doctor, and sometimes I worry that one day I’ll walk in and find out he’s retiring. I’ve been with him nearly the whole time—nearly because there was one stretch when he tried to pawn me off on another doctor at another hospital because my numbers wouldn’t behave. But that’s a story for another time.
The time after my diagnosis was one of the darkest periods of my life. I slipped into a depression I had never known before. I truly thought CML was a death sentence. I was afraid to buy anything because I figured it would just have to be sold or given away. There were days I stayed home—not because I was sick, but because I didn’t want anyone to see me fall apart.
And honestly… at that time, I didn’t care.
Through some very serious conversations with my wife, my parents, and my oncologist, I slowly crawled my way out of that hole. It didn’t happen quickly. It didn’t happen neatly. But it happened.
They say laughter is the best medicine, and while my insurance company may disagree, I’ve found it to be pretty true. If you go back and read some of my early posts, you’ll notice they don’t carry the same humor as the ones I write now. There’s a reason for that.
I still have days when the weight hits harder than others. I still have moments of fear, frustration, and fatigue. But I’ve learned that sometimes it’s better to laugh at life’s situations than to let them crush you. Humor didn’t remove cancer from my life—but it did give me a way to live with it.
So here I am, almost twelve years in. Still showing up. Still rolling the dice on lab work. Still grateful for “undetected,” even when it comes with an asterisk. Still learning. Still stumbling. Still here. And still trying to laugh whenever possible… because some days, laughter is the only thing in the room that reminds you you’re still alive.
If you’re reading this and you’re walking through cancer, or any other terminal or life-altering diagnosis, let me tell you something I had to learn the hard way: don’t give up. Don’t give up on tomorrow. Don’t give up on joy. Don’t give up on the people who love you. And don’t give up on yourself.
There will be dark days. There will be scary appointments. There will be lab results that knock the wind out of you. But there will also be days you never thought you’d see. Conversations you didn’t think you’d have. Laughs, you didn’t think you were capable of anymore. Life doesn’t end when a diagnosis begins. It just changes.
Hold on. Ask questions. Lean on the people God has put in your life. Celebrate the good days. Endure the hard ones. And if all you can do on some days is get out of bed and breathe, then that is more than enough for that day.
Almost twelve years ago, I thought my story was coming to an end.
It turns out that it was just the beginning of a very different chapter.
And as long as there’s breath in your lungs, there is still a reason to keep turning the pages.
Happy belated holidays! Wow! It’s been a rollercoaster ride for me and my family. There is no way I can put all that’s been going on in one post. If I did, it would be a very long post and most would not read to the end. So, that being said I’ll probably post several topics in the next few days. I’ll go ahead and briefly tell you what’s been going on though.
Diet Nonexistent. I really tired but these holidays were just too much for my weak will power. I am back on it but and I have lost a few pounds. I got on my treadmill the other day and I think the thing has a weak motor. I know I weigh quite a bit but I don’t think the thing should stop suddenly like that. Maybe I’ll rejoin the gym at the local Baptist church up the street.
Dad’s Kidney Stones Dad called me up before Christmas wanting to know if I could take him to the hospital to have a kidney stone removed. It seems that my mom, which is in her 80’s, had to take her to a clinic in the early morning hours that morning. The doctor there said that he had a stone which was too big to pass on his own. 1.2mm x .08mm. The clinic did not have the resources there to break up the stone. I took him to the hospital and the doctor there said that they normally do not call in the urologist for anything that small. My dad and I looked at each other. I looked it up and 1.2mm is nearly half an inch. I called the doctor out on it and he reassured me that my dad could pass the stone. The day after Christmas, which was about a week later, my sister made an appointment with a urologist and had the stone removed. I won’t go into how they did it but from the sound of it, I wouldn’t want to have it done. I spoke to him yesterday and all is well.
Oncologist Report I haven’t been or heard from my oncologist since last August. A lot of things have been going on with different meds that had me concerned about my numbers. You see, I’m on drugs for some ulcers in my lower stomach. One of the drugs that I’ve been on is Zantac. This drug has been known to lower the effectiveness of my cancer drug as well as cause cancer too. In order for the ulcer med to have minimal effect on my cancer drug, there had to be a six-hour delay before I could take my cancer drug after taking the ulcer drug. Now, the new drug they have me on after taking me off the Zantac, they want me to take it four times a day but still keep the six-hour delay. Can’t be done. So far I have only figured out that I can take it in the morning and once at night before going to bed. This is crazy. Oh, by the way, all my numbers are good.
Ok, that’s it for tonight. There are several more interesting items that I want to talk about so stay tuned.
As a child I used to love to ride roller-coasters. I would ride for hours just to ride different coasters. As I got older I out grew my fascination with coasters because my stomach couldn’t handle going upside down and being bounced around as much. I guess riding a coaster is the best way to describe living with CML. It is for me at least.
The last few months have been just that, a roller coaster. Since I was diagnosed in February of 2014, I’ve been on three different medications. I had to change because either the medicine quit working or it caused fluid around my heart and lungs. In January of 2016 I had both type A and type B flu as well as pneumonia along with fluid around both of my lungs. I was admitted into the hospital where they did all sorts of tests. They eventually removed just over two liters of fluid around my right lung. There was at least that much or more in my left lung but they would not remove it due to risk of infection. It was during this time they took me off the medicine that they thought was creating the fluid.
In March of 2016 I was placed on a different drug and up until August of this year, I haven’t had any side effects of the drug. But, unfortunately due to becoming severely anemic, and after having several tests done, they found that I had a bleeding ulcer. Oh, but it gets worse. The medicine for the ulcer reduces the effectiveness of the CML drug. We were told that it didn’t but it did. During the first several months after taking the ulcer meds, my CML numbers started increasing. After several months of this my oncologist decided that he had done all he could for me and that he was referring me to a bone marrow transplant team. These were to be the darkest days of my life.
About the same time I was diagnosed, another young lady in my community was diagnosed with CML. She didn’t like the side effects the drug was causing so she stopped taking the drug. Her CML escalated and she had to have a bone marrow transplant. I followed her on Facebook through her whole ordeal. She was in the hospital for six long weeks having this procedure. I remembered her ordeal when I was told that I would be having the same thing.
The doctor that I was sent to was not on the transplant team. The hospital he is associated with is one of the best cancer research centers in the US but the doctor had a lot of growing up to do. He was fresh out of college. In fact, I have a son that is not much older that he is. My other oncologist has over thirty years of experience but like I said, this doctor is fresh out of college and from another country to boot. Nothing wrong with that though. What this doctor had in knowledge, he lacked in experience. I saw this doctor about 4 times and it was enough to know that there wasn’t going to be a 5th. He did have a couple of suggestions that I did get out of our visits. He stated that I was not a good candidate for a bone marrow transplant and that I was probably taking way too much medicine. He also mentioned that I was supposed to be taking my cancer meds with food, which at that time I wasn’t.
So, as of today, I’m back with my previous oncologist, my numbers are back where they need to be and most everything is where it needs to be. I am working on getting disability. I have a hearing in January. I’ve had to get a handicap place-card because of gout in my right foot.
So, as you see, my life has been somewhat of a roller coaster. It’s been up, then down then on the up side again. I’ve been reading books and trying to listen to some easy jazz music just to help me relax a bit.
I took my first dosage of Bosulif on Tuesday, April 3rd, and so far I’m not experiencing any fortuitous side effects that I’m aware of. I have called my oncologist to let him know that I have started taking the drug but he has not told me when to come back in for any followup tests. I would imagine that he would want to see me in two to three weeks, at least time to see if the drug is working.
For those that may be interested, I’m going to post the side effects of this med later on in this post but first I’m going to recommend someone else’s blog. BeautyBeyondBones is the blog that you need to go take a look at. She is recovering from Anorexia. Her blog is about her recovery and she has several books about cooking and she has published a book about her journey from Anorexia to Recovery. You should go and check her out.
Side effects of the drug Bosulif.
Important Safety Information and Indication
Do not take BOSULIF® (bosutinib) if you are allergic to bosutinib or any of the ingredients in BOSULIF.
BOSULIF may cause serious side effects, including:
Stomach problems. BOSULIF may cause stomach (abdomen) pain, nausea, diarrhea, or vomiting. Tell your doctor about any stomach problems
Low blood cell counts. BOSULIF may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia) and low white blood cell counts (neutropenia). Your doctor should do blood tests to check your blood cell counts regularly during your treatment with BOSULIF. Call your doctor right away if you have unexpected bleeding or bruising, blood in your urine or stools, fever, or any signs of an infection
Liver problems. BOSULIF may cause liver problems. Your doctor should do blood tests to check your liver function regularly during your treatment with BOSULIF. Call your doctor right away if your skin or the white part of your eyes turns yellow (jaundice) or you have dark “tea color” urine
Your body may hold too much fluid (fluid retention). Fluid may build up in the lining of your lungs, the sac around your heart, or your stomach cavity. Call your doctor right away if you get any of the following symptoms during your treatment with BOSULIF:
– shortness of breath and cough
– chest pain
– swelling in your hands, ankles, or feet
– swelling all over your body
– weight gain
Kidney problems. BOSULIF may cause kidney problems. Your doctor should do tests to check your kidney function when you start treatment with BOSULIF and during your treatment. Call your doctor right away if you get any of the following symptoms during your treatment with BOSULIF:
– you urinate more or less often than normal
– you make a much larger or smaller amount of urine than normal
The most common side effects of BOSULIF include: diarrhea, nausea, low blood cell counts, rash, vomiting, stomach pain, respiratory tract infection, fever, abnormal liver function, tiredness or weakness, cough, and headache
Tell your doctor right away if you get respiratory tract infections, loss of appetite, headache, dizziness, back pain, joint pain, or itching while taking BOSULIF. These may be symptoms of a severe allergic reaction.
Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of BOSULIF. For more information, ask your doctor or pharmacist.
Tell your doctor about the medicines you take, including prescription medicines, non-prescription medicines, vitamins, and herbal supplements. BOSULIF and certain other medicines can affect each other.
Before you take BOSULIF, tell your doctor if you:
have liver problems
have heart problems
have kidney problems
have any other medical conditions
are pregnant or plan to become pregnant. BOSULIF can harm your unborn baby. You should not become pregnant while taking BOSULIF. Tell your doctor right away if you become pregnant while taking BOSULIF
are a woman who may become pregnant. Use effective contraception (birth control) during and for at least 30 days after completing treatmentwith BOSULIF. Talk to your doctor about forms of birth control
are breastfeeding or plan to breastfeed. It is not known if BOSULIF passes into your breast milk or if it can harm your baby. You and your doctor should decide if you will take BOSULIF or breastfeed. You should not do both
Indication
BOSULIF is a prescription medicine used to treat adults who have a type of leukemia called Philadelphia chromosome–positive chronic myelogenous leukemia (Ph+ CML) who no longer benefit from or did not tolerate other treatment.
Good news!! I’m down three pounds this week. I’m trying to keep my carb intake to about 35 but I’m not doing so well. Maybe I’ll do better next week.
My meds still have not arrived. I guess I’ll call my oncologist on Monday if I don’t get it this weekend.
Tomorrow I plan on doing some cleaning up in my backyard. After which I plan on flying my drone. My son is coming home tomorrow sometime so I want to make sure I’m here when he get’s here. Next weekend is Easter weekend and all my kids should be home. I’m really looking forward to that. I can’t believe they’ve grown up on me. Two in college and one living on his own. They sure do grow up fast.
My oncologist called this evening wanting to know if my new meds had come in. They had not. He told me that my BCR-Abl numbers had greatly improved which is very surprising being that I’ve been off my Sprycel for nearly two months. Too bad my body can’t handle the medicine any longer. Once my new meds get here, which should be within a few days, I’ll start taking it. The side effects looks pretty bad, diarrhea, fluid retention in both the heart and lungs, low red blood counts, liver problems and multiple other issues. Bosulif will be the third medication that I will be on. There are only a couple more that is out there that is approved by the FDA. I’m hoping this works with minimal side effects