Here are some quotes from recent posts on the Bladder Cancer Advocacy Network that I find encouraging as I look ahead to my RC (Radical Cystectomy). It will be performed by Dr. Amit Gupta at the University of Iowa Hospitals and Clinics. An RC is the process of having my bladder removed. The doctor is planning on replacing it with a neo bladder…
From jennyssis: “No one in their right mind WANTS to have their bladder removed, but wanting to live takes precedence to what sounds like the most horrific surgery you could imagine. Our imaginations run wild on this, though, and the reality is not as bad as we imagine.”
From mikefro: “I had an RC with neo-bladder procedure in June of last year. I did not want to have my bladder removed, I was afraid of what life would be like afterwards. I am now 9 months post-surgery and am back to doing everything I did before surgery. We made two recent plane trips without any problems. “
From Cliffsider: “The single most important factor in life after RC is the confidence that you have chosen the very most effective plan of care; one that maximizes the likelihood of having a long cancer-free life!”
From seymourf: “My own experience is that I had RC and a neobladder installed 13 weeks ago. My life is pretty much back to normal. I am back to work and I am working out at the gym. My diet is normal. My neobladder gives me around 6 hours of sleep at night.”
From Thosmas0366: “I think there is almost nothing to fear about the surgery compared to the disease.”
And I think this one sums up how I feel:
From jennyssis: “The whole experience is pretty much a “grit your teeth” and go for it so that you can stay alive with your family and friends for a nice long time.”
That means you. Thank you for your support.
My garden is looking exceptionally nice this year. Thank you, Eileen. She’s been weeding regularly and doing all that she can to make my life easier. Plus, this year I was unable to start my plants from seeds. So I bought them from Menard’s and Lowe’s. I felt like I was cheating, but the plants are big so quickly (already ate a small tomato) that I think I’ve set a precedent for coming years. Now the challenge will be to convince Eileen next year that she needs to weed my garden.
Most of you know that I am a writer. Now I have a blog. AND there are dozens of you who have said you will read what I write. Wow! That’s why I promise that I will stick to the topic and I will not post something every hour (even though I’m certain it would be extremely interesting).
The picture included with this post features a plant given to me by Ann, Tim, and Lauren (Ann is Eileen’s sister, Tim is her husband, and Lauren is their daughter, my niece). I was struck by the thought that this amazing plant came into my life solely because I have bladder cancer. I’m certain Buddha or a Zen Master would smile and say that on balance, I am a very lucky person. I would readily agree. Thank you Ann, Tim, and Lauren.
I think oncologists are like chefs because with every patient they need to figure out which recipe to use. And in my case the analogy is true because my oncologist is “preparing” me for surgery.
My first chemotherapy treatment will be July 6th. I am having “dd M-VAC.” DD means dense dose. Normally, M-VAC consists of 4 treatments spread out over 12 weeks. With Dense Dose, the 4 treatments are given over 8 weeks. The DD is more effective. It is given to patients who they believe are physically capable of handling it. (Eileen believes that they classified me that way because I wore new jeans and a new shirt to the consultation – I believe it is because I like to chop wood.)
On July 6th, I will receive the “M” part of the treatment. It should take less than 2 hours. On the 7th, I will receive the “VAC” part. It will take more than 4 hours. On the 8th I get a shot to boost my white blood cell count (takes a few minutes). Eileen and I are attending a class on the 6th before the first treatment to learn what to expect and how to deal with whatever happens. Bon Appétit!
Eileen and I went to the cancer center today (July 6th) and had a class about what to expect with the chemotherapy. While we were there having class, two things brought about a change of plans in my chemotherapy schedule.
One is that (based on the bruising on my arms from needles over the past 10 days) my veins are not an easy target, and sometimes they gush like a garden hose but then quickly lose pressure, forcing the nurse to pierce again in another spot. (This has always happened to me over the years and is not a reflection on the skills of the nurse.) The nurses and I decided that having the first series of chemo directly into a vein, and not into a port, would not be pleasant. (I had already been scheduled to have the port put in on Wednesday.)
Second, I had not had a MUGA test. A MUGA test is the process of taking some blood out of my arm, mixing it with radioactive “stuff” and then injecting it back into my arm. Four 6-minute videos are taken to track the radioactivity through my heart. A MUGA test is mandatory before starting chemo to have a benchmark of heart performance.
All leading to today’s change in plans. Instead of starting the chemo, Eileen and I left the cancer center and went to the hospital where I had my MUGA. Now my first chemo session will be Wednesday, July 15th. This will give my port a week to heal before it is used. Also, rather than take the 4 chemo drugs (MVAC) over two days, we decided to do them all in one day. This does not impact the side effects (like make them worse) – it is strictly a more convenient method. It only means a longer day. So on the 15th I will have many, many hours to blog and tell you all about what I’m feeling (Eileen will be with me to edit).
The book illustrating this post is A Change In Plans by Paul Cook. I recently received a note from his widow Susan Knutsen-Cook reminding me that without Paul here, it’s a sure thing that I’m missing out on all kinds of bladder cancer jokes. It’s true – and there’s no doubt they’d be funny. He always made me laugh. I and everyone in the St. Charles Writers Group truly miss him. (Click on the book cover to learn more about Paul.)
My left-side port features a bright sun, a fun red boat, and gentle waves lapping against a sturdy wood pier. (Thank you, Eileen.)
My right-side port is Barney purple, under my skin, and what I had “installed” yesterday. (I asked if they come in colors other than purple. They don’t.)
Up until a few weeks ago, I didn’t know what an injection port was. I imagined it as a tube with a plug in the end – when I needed to get a shot or something, they’d unplug it. It is in fact a container “device” that is inserted under the skin that taps in to my jugular vein. The device serves as an easy-to-find target for needles. The direct line to my jugular vein assures rapid intake of whatever is being administered.
When Eileen and I went to Swedish American Hospital in Rockford yesterday, I was concerned about the procedure, not knowing what to expect. The 2nd floor cath lab team that worked on me was wonderful. Everything went smoothly and pain free. I’m looking forward to the post-op survey so I can give them a lot of positive feedback.
I am now chemo ready. I am actually looking forward to the 15th when all of those drugs will have the opportunity to do their thing. And while the drugs are going into my right-side port, I’ll be fantasizing about going out to that left-side port.
Today (Tuesday) my port was used for the first time. (It’ll be standard procedure for the oncologist to take a blood sample the day before I get chemo.) I was a tad anxious – I anticipated that a needle in the chest would sting more than in the arm. But I was wrong. Painless. Now I’m less concerned about how things will feel tomorrow. Having a port is a good thing.
As I was leaving the oncologist’s office, the receptionist asked to me to wait so they could give me a present. They then handed me the haircut kit shown in the photo. At first I didn’t understand and I stared at them a moment – then it clicked and I laughed.
They explained that Wahl Clipper is in Sterling, just down the road from Dixon where I’m having the chemo. A previous chemo recipient who worked at Wahl Clipper wanted to do something nice and gave them several of the haircutting kits.
Thank you all for the many kind thoughts you’re sending my way. I’m anticipating all will go well tomorrow.
When he wasn’t looking, I snapped a photo. This robot spent 4 hours today doing everything it could to rescue me from the dangers of cancer. It dripped, pushed and pumped. It beeped. And when I had to go the the bathroom, it followed me in and stood patiently at my side (and didn’t peak).
To reinforce its efforts, the robot beep-beeped for help. And the very best answered the call: Cheryl, Cindy, Brittany, Val, Trista. Together they formed a great team. My time zipped by. Everything went well. No problems while I was with them, and no problems since I’ve been home.
Eileen was there with me. We had a consultation with Dr. Shipp prior to the treatment. We believe we are prepared for just about anything for the next several days.
Eileen and I were home by 4 pm today. We worked outside for a few hours (she weeding and me mowing the pasture) then had dinner. It was a normal evening. And that is the best news I can report.
I left work early yesterday (Thursday) to go to Rockford for a shot of Neulasta. Here’s why…
Cancer is a fast growing cell and chemotherapy targets fast growing cells. Other fast growing cells are hair (bye!) and white blood cells (ouch!). The main reason I am able to get 12 weeks of chemo in 8 weeks is because of Neulasta. It builds my cell count quickly. Without it, it would take those extra weeks to build back up.
I will get a blood test on Tuesday the 21st, and on Tuesday the 28th. If the white blood cells are where they should be, I’ll get my next chemo on the 29th.
(Photo: Eileen and I went to the movies this past weekend with our niece, Lauren. You can figure out who is who.)
The thing that is amazing to me is medical science…
When I went for my consultation with the oncologist on Wednesday (22nd), I didn’t know what to expect. I was prepared for the worst case: my white blood cells might be too low and my body might not be reacting well to the chemo.
In fact, the opposite was true. My blood pressure was perfect and my blood levels were BETTER than pre-chemo measurements. These results mean the Neulasta shot I received the day after chemo gave my body the boost it needed. I’m good to go for round two of chemo on the 29th.
Somewhere out there is a scientist who spent long hours figuring out how to make an injected liquid that would create white blood cells. Thank you.
The photo shows some less dramatic amazing science: We now have a generator. No more missed Super Bowl games because the power is out (plus we can keep warm)!