Quick Report
Today was another good day (I think that’s three in a row). It was also our first airport experience since COVID. Everything went pretty smooth - Delta seemed to have their protocols dialed in. The drive from Minneapolis to Rochester was pretty. However, the drive is where the rear pain increased, making it difficult to get comfortable. Thank goodness it only a short 70 minute drive.
I got up too early this morning and it is getting late so I’m keeping this short tonight.
Hoorays!!!
Today was a good day in many ways. No nausea! Hooray! Pain continues, but was well managed today. Another hooray! I was able to work on more sun printing. A hooray and a yippie! Best of all…I was able to see and visit with some of my work family (Ann, Sue, Brendan and Brandon). A triple hooray and a double yippie!
Tomorrow we head back to Rochester. This time we are going to fly! I’m a little nervous about being in an airport full of people.
Wednesday is a full day of appointments: blood draw, CT scan (to see if the cancer shows up anywhere else), office visit with the radiation oncologist, office visit with the medical oncologist, and then finish the day with another COVID test. At this point nothing is scheduled for Thursday or Friday. Third cycle of chemo starts next Monday and continues through Tuesday and Wednesday, then we fly back home on Thursday.
Milton can sleep anytime and anywhere!
Ups and Downs
So, how did today measure up after having such a good day yesterday? Unfortunately, it was not a better day or even the same as yesterday - but overall it was still a decent day. The nausea returned and stuck around most of the day. The pain in my rear continued to be intense at certain moments. What made it a good day was what I was able to accomplish. We went on four walks throughout the day, I was able to sun print again (and the sun cooperated), and I completed more chores around the house. We leave on Tuesday to return to Rochester, so tomorrow will be a busy day of packing and preparing to be gone again. It’s hard to believe that it is already time to go back!
I like the look of the roots.
Happy Day!
It is great to share that today was a fantastic day! There were still episodes of severe pain, but all in all it was definitely better managed. In all cases today the recovery time was dramatically reduced from previous days. Thank goodness. Nausea continues to be minimal, if at all. I have not taken any anti-nausea meds during the day for several days now. Tonight will be the first night I’m not going to take an anti-nausea before bed.
I completed two good walks today which is more than I’ve done since we got home a week ago. That felt really good. I also did a little sun printing when the sun cooperated. It seemed like every time I took something outside to expose the sun would hide under a cloud.
i can’t wait to see what tomorrow brings!
Another ER Visit
Today started as a great day. No nausea and the pain seemed to be more under control and tolerable. I had good energy and was able to accomplish a few chores. Jean and Eric came down for a visit in the early afternoon [Jon’s brother and his wife, for those who don’t know]. It was so nice to be able to spend time with them.
By mid-afternoon, after a couple bathroom visits, the pain soared to unbearable at times and barely tolerable at other times. Jon grew concerned and sent an email message to the radiology oncologist at Mayo. Within a short amount of time Traci, the Nurse Practitioner in the Radiology Oncology department called to find out more about what was going on. She suggested that I increase my medication dosage to better manage the pain. She also suggested that I contact Dr. Halfdanarson, my Medical Oncologist to let him know what was going on. Before I could even call Dr. Halfdanarson, Traci called back [this time she talked to Jon] to let us know that she had just spoken to Dr. Halfdanarson and that he was expecting our call. This is another example of why I love the Mayo Clinic! Anyway…fast forward…Jon talked to Dr. Halfdanarson’s nurse who conveyed that Dr. Halfdanarson was with a patient but he wanted me to go to the ER to get some tests done. Because of my chemo they are always concerned with potential fevers and because I use Tylenol to aid in pain management Dr. Halfdanarson wanted to make sure the Tylenol was not masking a fever. So off to the ER we went. The ER was packed but we actually got into a room within a very short amount of time. After that, time started to drag. Once the test results came in the ER doctor called Dr. Halfdanarson to review them with him. The good news is that everything is ok. All my counts are low…but they are at the expected lows. We were in the ER from around 6:15 pm until 11:00.
This made for a long day and for the first time in a long time I felt hunger…I had an appetite and wanted something to eat. That’s a big deal when, for a very long time, food has not sounded good.
Tomorrow (which is now today) will be a better day!!!
Fingers Crossed!
Today was a long day, so I am a bit too tired to write much tonight. The pain continues at about the same level, but the frequency dropped off a little today. That makes today a better day than yesterday. Fingers are crossed that we have reached the peak of the bell curve and that each day forward will be better than the day before!
Tonight we had dinner with our good friends Zolton and Mary. It was so nice to sit and chat and share a meal. Sitting for me now means constantly shifting to find a more comfortable position.
Bell Curve
Another day…and I’m hoping we hit the top of the bell curve today - I want to start my decent to less and less pain. Unfortunately today was full of “bad” moments…11 to be exact! Still too soon to see if the new meds are working. It is now too painful to stand in one place for any length of time so I need to be either walking (staying close to home) or l need to be laying down. Kind of sucks right now, but I know it will change soon!
I still managed to get two walks in (one was fairly short). I also had a nice visit with my good friend Sue Caulfield. Cheers to a better tomorrow!
This is my homemade donut cushion. Worked pretty good…sort of.
“Written Warning”
I missed my deadline for my post last night so I had a long talk with myself today and decided that it was not acceptable. I then issued myself a “written warning” to ensure it doesn’t happen again.
Monday afternoon and evening ended up being extra difficult for me. While the nausea is well managed, the rear pain has escalated even more. More of my rear area is blistering because of the radiation. We spoke to the radiology nurse today and she prescribed a burn ointment as well as a stronger pain medication. We just started the new meds tonight so we’ll see tomorrow how well they are working. Fingers are crossed!
Otherwise,, today was a nice day. I was able to get in a couple short walks. I’m looking forward to a brighter tomorrow!
Sunday Report
The doctor said the radiation side effects would get worse before they got better. She didn’t lie! The spasms and the burning were at their worst today - primarily because it seemed more constant than any of the previous days. Today was the first time I had a hard time walking because of the pain. Since she forewarned me, I was prepared for it and didn’t let it get me down. Besides…I’m home - how could I let anything get me down. The pain levels were lower by late afternoon so we were able to get In our evening walk.
In spite of the pain levels it was still a good day. Our friends, Zolton and Mary stopped by for a “safe distance” visit. It was so nice to see them and visit for awhile.
Another tar patch on the Bear Creek trail. What do you see? I see a bird. Jon sees a man in a beanie!
Home Sweet Home
I can’t begin to describe how good it feels to be home! I think I missed it more than I even realized. The drive home (about 7.5 - 8 hours) went smoothly. I drove the first hour and a half or so (until my rear end started hurting from sitting in the same position) and then Jon drove the rest of the way. As a passenger I could shift around all I wanted so the ride wasn’t too bad at all. We made good time and rolled into our driveway at around 5:30.
Herb and Beth made dinner for us, so we socially distanced in the back yard and visited. Good friends and good food make a good welcome home!
More traffic as we enter Chicago.
The truck blocked my original shot, but I like the way it turned out.
Milton now thinks he owns a town in Wisconsin! Izzy thinks he’s a moron.
The Sound of Hope
For generations, the ringing of bells has played a significant role in the history and culture at the Mayo Clinic. The sound symbolizes Mayo’s unique sense of community and dedication to the values of respect, compassion and healing - the sound of hope. Ringing the bell signifies the completion of a patient’s course of treatment and shares the sound of hope with others on the journey.
This morning I rang the bell after completing my 25th radiation treatment. It was a emotional act for me…a definite reminder of hope and all that it brings to my journey.
The balance of our day was spent either walking or packing. The car is already 90% loaded so we can get an early start in the morning. I am looking forward to going home…I miss it!
Fried Chicken Tenders!
Most of today was pretty good. The nausea meds seemed to be doing their job (very little nausea). Energy level was good - I even did a little prep work for going home on Saturday. The pain medication also did it’s job. Although the pain was still there periodically throughout the day, it didn’t exceed a “moderate” level - until after dinner. Then it ratcheted up from the occasional mild spasm to an almost constant burning pain. I think the severity is my fault though. I strayed from my bland low fiber diet and stupidly decided to fry some chicken tenders for dinner (I’m suppose to avoid fried foods). My issues started shortly after dinner and has continued throughout the evening. Lesson learned!
I still hang on to the day’s positive points - in addition to the minimal nausea and minimal pain earlier in the day, I completed my 24th radiation treatment. We were also able to enjoy an afternoon stroll through the local cemetery. I always find reading cemetery monuments interesting…wondering about the history of the person.
Tomorrow morning is my last radiation treatment. They scheduled this last appointment earlier than the rest, so by 8:30 AM CST I will be done with radiation! I’m one step closer!
Main entrance to cemetery.
Long Day
Only one appointment today but it still felt like a long day. It was a good day since I experienced minimal bouts of nausea - most of the day was pretty much nausea free. What a relief and what a difference it makes.
What made it a long day was trying to battle the burning. The burning has progressed to a fairly constant severe irritant rather than just a periodic bathroom thing. The doctor had warned this would happen. I finally took some pain medication this afternoon, which really helped - at least for awhile.. We meet with the radiology oncologist tomorrow so hopefully she’ll have some more suggestions for us.
The best thing about today- I completed radiation treatment #23. Only two left.
I continue to be in awe of the beautiful surroundings during our morning walks.
Turned Out to be a Busy Day
Today started with just two appointments scheduled…an office visit with the radiology oncologist, Dr.Owen and my 22nd radiation treatment. That changed early in the day with the addition of two more appointments.
I received a call back from the medical oncology nurse this morning to talk about my nausea issues. After describing my symptoms and providing her with information about my drug regiment (what I’m actually taking and when), my daily hydration volumes, my appetite and eating habits, and my poo schedule for the past few days, she said she would talk to the doctor and get back to me. She called back within an hour or so with the plan.
Dr Halfdanarson, ordered more blood work to check my levels (the results were posted mid afternoon and most of my levels were good…I seemed to bounce back quicker after this last round of chemo).
He added another anti-nausea drug to my arsenal (it’s a daily dose so I waited to take it at bedtime tonight).
And lastly, I was scheduled for “hydration therapy” for later in the afternoon. I thought, wow….sounds like a little spa time. I should have known better…”hydration therapy” is when the stick an IV in your arm and fill you up with fluids….and then to jazz it up a little the also inject a steroid into the IV. The infusion did perk me up a bit. Jon said he noticed a difference.
I still experienced nausea off and on throughout the day, but it was more at a level 3 than a level 7 or 8. That’s an improvement! I’m hoping the new drug will have it more under control by morning.
The office visit with the radiology oncologist went well. We talked quite a bit about the burning discomfort. She gave me some things to try right away….like switch from toilet paper to baby wipes. She also prescribed a non narcotic pain medication, but I worry about the side effect causing more problems than it fixes. We filled the prescription, but I’ll hold out a little longer before I take any. What I did learn (and maybe I already knew and blocked it out of my mind) was that the last week of radiation was the beginning of the most painful period, and that the burning pain will escalate for about two weeks after radiation ends. I have another appointment on Thursday with the radiology oncologist to talk more about the pain - she wanted to meet again before we left for home.
ONLY 3 RADIATION TREATMENTS LEFT!!!
View from the 8th floor of the Eisenburg building. Beautiful clouds!
Monday…
Today was the first day of the fifth and last week of radiation. Only four more radiation treatments to go. I’m almost there! Thoughts of going home this weekend (hopefully) are giving me that extra push I need right now.
In some ways today was a better day - but I’m not really sure I could explain what made it a better day. Outside it was beautiful, partly sunny, and cool. Only 52 degrees when we left the apartment. My walk was shortened a little because of discomfort (I only did 4 miles), but I’m ok with that. I still felt nauseous most of the day, but did get a few short periods of relief. I plan to talk with the doctor tomorrow to see if more can be done to minimize the nausea. I also plan to ask about the constant burning. Fingers remain crossed that each day will see progress and get a little better.
In the apartment…on our way out for an evening walk.
Somewhat Better!
Today was a better day - but there were still some rough patches. The nausea continued throughout the day, but not as intense as yesterday. It is frustrating because I keep thinking the anti-nausea pills will stop the nausea, but they don’t. I appreciate that the mornings are more tolerable so we are able to get out for nice long walks. It’s the best part of the day…when I feel my calmest. The burning sensation in my behind is the worst. The episodes were fewer today so I was thankful for that. I still hold out that whatever I experience today brings me another step closer to healing…and that’s what I hang on to. Tomorrow starts my last week of radiation…only 5 treatments left. I know I can do it!
This is a tar patch on the trail…looks like the big bad wolf!
Not a Great Day
Today’s post is hard for me to write. This has been my most challenging day. I’ve written about bad moments, but I would describe today as a bad day. It started off good with a nice walk -with just a little nausea. After breakfast I decided to do a little of my cyanotype printing. Once I got everything set up I started to feel more nauseous, but still tried to power through and actually do some printing. I lasted about a hour then packed up everything and went back to our apartment. During this time the burning in my behind started and lasted through the rest of the afternoon. It was painful. Both the nausea and the pain zapped all my energy. Luckily, I have Jon and he tried talking me through what I was feeling. I hated today, but I also know , when I think logically about it, that it is still a day of healing and that I’m still on the right path. I know above all else that I need to stay positive.
I Love Milestones
I can’t believe another week has gone by. As of today I have completed 20 radiation treatments, which means I am now at the 80% mark. Only 5 sessions remaining…easy peasy!!!
i also finished the 2nd cycle of chemotherapy today, so I am now at the 50% mark with chemo. This has been my biggest challenge…primarily the nausea. Today I again experienced bouts of nausea most of the day. It makes me tired, not hungry, and not thirsty. All the things that are important to help with my recovery. Lucky I have Jon here encouraging me to move around, and insisting that I drink plenty of water and eat adequate amounts of food.
Update on the hair front -
Most of the dark hair on my head is gone, leaving just the gray. When all alone the gray reads white. So I now have this head of thin white hair. I can live with this for awhile. It will be interesting to see if this week’s chemotherapy will bring on more changes.
Looking forward to tomorrow to possibly create some more art. I feel the need!
Late Post for Thursday
Sorry folks, I fell asleep last night before I could finish my post. I blame it on the drugs!
Thursday morning I woke up with nausea and it was with me all day (hence the drugs). It’s was not debilitating, but it made for a challenging day…feeling yucky and tired. I also experienced a new side effect tonight - hiccups!!! When googling how to stop them Jon discovered that hiccups are a known side effect of some anti nausea drugs and steroids used with cancer patients. Mine only lasted about 10-15 minutes, but the article says they could last for hours.
The radiation treatment was uneventful. #19 completed (only six left).
It was a short day for chemo, in and out in 2 1/2 half hours. It would have been shorter but they were fussing on the type and dose of anti nausea drugs to infuse prior to the chemo meds.
On a different note… we spent a couple hours talking with a couple (Jean and Ruben) who we met a few days ago. They have an apartment in the same building are from Okemos, Michigan. Ruben is also a patient here with has cancer and has been going through radiation (post surgery). We spent a nice evening getting to know them and their journey, as well as sharing ours.
The photos are views from the window in my Chemo treatment room. Nice views!
Super Busy Day
I woke up with a little nausea today. Not horrible, but just enough to be an irritant. Chemo was scheduled for 7:00 AM so I needed to move fast to get any kind of walk. I was up at 5:00, took a quick shower, ate breakfast and was out the door at 5:45 for a quick 45 minute walk on the trail. Then back to the apartment for 10 minutes to pack up to leave for today’ chemo appointment.
We made it the appointment with about 30 seconds to spare.. Checked in and was called right back. During set up the nurse explained that the doctor’s orders had been modified because of my numbers. The numbers had risen enough for me to have chemo, but not the full amount. Both chemo drugs were reduced by 10% in quantity. The doctor felt it was a better option than to postpone all the chemo by another week. So, even with the smaller quantities I was still tied up for 5 hours with the chemo treatments.
Our next appointment was the rescheduled visit with Dr. Owen, the Radiation Oncologist. We initially met with her Advance Planning nurse (Tracie) to discuss what was going on, what symptoms was I experiencing, and what I should try. Dr. Owen then joined us but almost immediately had to step back out for a page. Not so bad, except I had been drinking lots of water to prep for my radiation treatment that was to follow this appointment. We were already running 20 minutes late for the radiation treatment. I thought I could hold it a little bit longer, but once I started to think about it..I lost. Since we were waiting for the doctor I step out to find a bathroom to see if I could just let a little bit out. I ran into the doctor and nurse in the hall. and the doctor said I should go to my treatment right now. I asked her if she could show the scans to Jon and let him know what was going on with the tumor and lymph nodes. She was fine with that, so the nurse escorted me to the treatment area and I left the doctor “alone” with Jon.
After Jon shared with me afterwards all his questioning of the doctor, I thought that doctor didn’t know what she let herself into when she agreed to talk alone with him. He can be quite the inquisitor. He said she was fine and actually appreciated his line of questioning. This is a Reader’s Digest version of what he learned.
The two lymph nodes with the small tumors are almost undetectable! The main tumor is still getting smaller and it appears to be shrinking in the optimal direction for surgery, if surgery is needed in the future. All still positive.
I have a CT scan of the chest and abdominal area scheduled for August 19. This is to make sure there are no new occurrences of the cancer anywhere else.
It is the doctor’s belief that surgery will not be decided until after the 4th cycle of chemo, tentatively scheduled for mid September.
There was so much more Jon extracted from the doctor. He felt it was a great conversation. They were just finishing the appointment when I finished my treatment.
We originally planned to finish cycle 3 and cycle 4 of my chemo in Kalamazoo. We decided the best plan is to receive ALL my treatments at the Mayo Clinic. If my health allows we plan to return home to home on August 8 and return to Rochester on August, 18, for tests and an office visit with Dr. Halfdanarson (Medical Oncologist) on the 19th. Cycle 3 of chemo is the schedule for the following Monday(24th), Tuesday (25th) and Wednesday.(26th). We have extended the lease on the apartment until the end of September, just to give us a little flexibility.
I’m getting too sleepy to write more and too worried that I’m writing too much at once. Despite of all my ribbing, I am in awe of Jon’s ability to talk intelligently to the medical professionals and actually understand what is being said. I know this also has a huge impact on my quality of care.
I’m not any good at selfies!