Back at Mayo
It was a beautiful drive back to Rochester today. Traffic was pretty heavy the whole way. Where are all of these people going?
Tomorrow is test day….MRI and blood work in the morning, and PET CT scan in the afternoon. No more food until after my last test in the afternoon. We’ll get the results Tuesday morning when we meet with the doctors. I’ve been pretty anxious wanting to get this done so we’ll know what is next. I’m staying positive and keeping my fingers crossed!
HAIR UPDATE - My hair has been white and thin now for several months. This weekend we noticed some new dark hairs on the top of my head. 😁
Getting Anxious
I can’t believe that three weeks ago today I finished my last chemo infusion. I’m feeling pretty darn good…physically. Mentally…well, I’m doing ok. I occasionally feel a little down about the uncertainty of what’s next. It is still almost two weeks until my post-treatment testing to learn about the current status of the cancer. I’m a little anxious, but try not to dwell on it. The surgeon’s office called this week with my surgery date. Even though I know it’s not an absolute, having a date now on the calendar makes it feel more real…like it is more of a possibility. That kind of bummed me out for awhile. If surgery is necessary, it will be on November 5. I’m still hanging on to the hope that the testing in a few weeks will tell us the cancer is so dead (and has not spread) that surgery is not needed. We will continue to stay positive and take it one step at a time.
Milton falls asleep almost as soon as I pick him up.
Frequency
When I started this blog, almost three months ago, I set of goal of writing every day. It became an important part of helping me process what was happening and it gave me a vehicle to share my journey. Now that things are on hold for awhile (until I go back to Mayo for my tests) I think I will back off on the daily writing. I still want to keep the blog going, I will just write less often for awhile. If you subscribed to my blog you will get an email prompt whenever I add a new post.
So here is where things stand today -
My rebound from the last round of chemo has been remarkably quick this time. I feel great. No nausea. Very little metallic taste in my mouth. And best of all, I am off of all anti nausea drugs!
My weight is down. Prior to my treatments I weighed about 175 pounds. During treatments I got as low as 153. As of yesterday, I am back up to 159 pounds. Along with losing weight I lost a lot of muscle. I have started to work out again with light weights. I am hoping to start working (safely) with my trainer and friend Charles in another week or two.
The affects of radiation - pain in the rear!!! Five weeks ago I was experiencing the worst pain I have ever experienced in my life - it was worse than anything I could have imagined. Today, the pain is all but gone. It no longer hurts to stand in place. I also no longer need extra padding on my chairs. While the skin is dried out I am pretty much healed on the outside. My body functions also indicate that I am healing on the inside as well.
My state of mind is good right now. There are still challenging moments, but I am doing ok.
As I move through these next few weeks I will write if something changes, if I get new information, or if I just feel like it. There are no rules that must be followed. I will definitely post on the 19th when we return to Mayo,
Thank you so much for all your support!
Harrison Circle construction site.
“Normal”
Since my diagnosis all I think about is cancer. Since my diagnosis everything in my life revolves around the cancer. I know I can’t totally forget about it, but I need to try to set aside the constant cancer thoughts from time to time. This was my goal for today - set aside the cancer thoughts and do normal things. It ended up that running errands today made me feel a little bit normal. This afternoon we walked to Walgreens to get our flu shots…it made me feel normal.
Dog Tired…
I fell asleep last night before I could write my post. I was exhausted both mentally and physically.
I am rebounding quicker than normal from the last round of chemo - no meds at all needed in the last two days! Let’s hope this is the new trend.
Last night’s sunset down Michigan Avenue.
Not an Uneventful Trip
I’d like to say that our trip home today was uneventful, but it wasn’t.
During the first couple weeks at Mayo this summer I had two incidents were I either lost consciousness or came close to losing consciousness. We learned that I have a condition called Vasovagal, which is a type of Reflex Syncope.
So, what is Vasovagal (Reflex Syncope)?
Reflex Syncope is a brief loss of consciousness due to a neurological induced drop in blood pressure. Vasovagal syncope is typically triggered by seeing blood, seeing or experiencing pain, emotional stress, or prolonged standing. Typically, when I have an episode I experience lightheadedness, nausea, the feeling of being extremely hot or sometimes cold (accompanied by sweating), dizziness and sometimes a spinning sensation. The symptoms usually become more intense over several seconds to several minutes before the loss of consciousness (if it is lost).
Anyway, I had an episode today on the plane just as we were landing in Grand Rapids. It was scary because I didn’t know what to do on the plane and it really scared and freaked out Jon. So what was my trigger today? I think it started with the stress of moving out of our apartment in Rochester and traveling home, but the final trigger was a show I was watching on the plane. I was watching “The Great British Bake Off”. Sounds pretty tame, but in this episode one of the contestants cut themselves, put on a glove and kept working. But then later they revealed the cut was worse than originally thought and they removed the glove on air. That sight was all it took to trigger an episode. I did not lose consciousness (although I thought I was going to), but I did leave the plane fuzzy headed and in a wheelchair. We sat outside our arrival gate for a little while and then I was fine….a little weak feeling, but fine.
This was not the homecoming I wanted.
This aside, it now feels so good to be home! I’m looking forward to an “uneventful” day tomorrow.
P.S. Sorry, no photo today.
What Lies Ahead
Today’s appointments shed more light on the next steps of the plan. I get about a month to recuperate from the last cycle of chemo before the next round of testing begins. When we return to Mayo on October 19th I will have an MRI, a PET CT scan and a sigmoidoscopy (all on the 19th). These will all be used to evaluate the current condition of the original tumor and two affected lymph nodes. The tests will also reveal if there is/are any new “distal” occurrence(s) of the cancer.
There are four possible outcomes from the scans and scope:
#1 The Cancer is “dead” and there is no new occurrence(s) of the cancer.
#2 The Cancer is “dead” and there is a new occurrence of the cancer.
#3 Some of the tumor is still “alive” and there is not a new occurrence of the cancer.
#4 Some of the tumor is “alive” and there is also a new occurrence of the cancer.
Of course, #1 is the best (fingers crossed on this outcome); outcome #3 is OK, but will require a significant surgery with its own risks, and outcomes #2 and #4...well, we just don’t want to see either of these outcomes. Up to this point my scans have been in my favor (no indications of a new occurrence) so there is a chance to see #1.. Both the surgeon and the radiology oncologist brought this up but it is just too early to tell.
It was clear after my two morning appointments that Mayo is about different disciplines of medicine working together to provide their patients positive outcomes (the team approach). The medical, radiology, and surgical teams are collaborating to provide the best possible outcome for me.
So now is the hard part - to wait a month to know if surgery is needed or basically what will happen next. A dear friend shared some comforting words that Jon and I will try to live by as we continue this journey…
Worry doesn’t take away tomorrow’s troubles, only today’s peace.
Fall Colors
Today was another good day - no nausea and no pain…just that darn metallic taste in my mouth.
Started to pack for the trip home on Tuesday. We are vacating the apartment after two and half months. It’s still hard for me to believe it’s been that long. I have two appointments on Monday - a consultation with the GI surgeon and a check up with the radiology oncologist.
Today was a beautiful fall day with lots of color starting to show in the trees.
Outside the Rochester Art Center - like the Chicago “bean”, only smaller…much smaller.
Not Much to Report
Not much to write about tonight…which in some ways is good. Very little nausea - that’s a big yippee! The metallic taste in my mouth is still present, however, without the nausea it is a little more tolerable. I’ve been sucking on a lot of hard lemon-raspberry candies to mask the metallic bitter taste. I don’t think I’ve mentioned the “pain” in awhile, but it is pretty much gone. It’s down to an infrequent mild discomfort. What a relief!
Highlight of the day - another malted from Flapdoodles!
A beautiful moon tonight (if you can move past the pixilation).
Fall is Here!
The only appointment today was to get my Neulasta shot. This is the white blood cell booster. Other than that there’s not much to report. The queasiness and nausea hung on all day. Yuck! Hopefully tomorrow will be better. The silver lining is that this should be the last time I’ll go through this. It just takes a week or two to work through it.
It was cold this morning so we bundled up for our first walk. I’m always cold lately so I wore my long pajamas as long underwear under my sweatpants…it helped. I also wore two long sleeve shirts, a jacket and a lightweight winter coat. Despite needing to bundle up it was still a beautiful walk.
Another Milestone
I reached another milestone today by completing my last cycle of chemo. Hooray! It feels so good to now have both radiation and the chemo behind me. The nausea seems to be more under control than in the past - so far I’m only experiencing a little queasiness. I’m also experiencing a little fatigue from the chemo, but mostly in the afternoons. I’m still able to get my walking miles in thanks to the persistence of my coach.
We have a consultation with the surgeon on Monday, but won’t have a definitive answer on surgery until mid October. Our next visit is now scheduled. We will return to Mayo on October 19 for a PET CT scan which will tell us the status of the primary tumor. This info will be used in the final decision about surgery. We meet with the medical oncologist on October 20. So a month of waiting. But that’s ok, because we’ll be home for that month.
My favorite nurse (Red) gave me a pin for completing all my chemo! I have one from Radiology Oncology too.
More scenery from this morning brisk (47 degree) walk on Bear Creek trail.
Beautiful vegetation!
More beautiful vegetation!
It’s been awhile, but I finally hit 15 miles - after about 10 late night laps around the apartment.
Cycle 4, Day 2
Day two of chemo went well. Nausea was fairly low except when I thought about food. It’s weird - when I think about feel it makes me feel queasy, but when I actually eat it is fine. I also experienced a bad case of hiccups tonight, which we had learned is a possible side effect of chemo. This is only the second time I’ve had them, but they lasted for well over an hour tonight. I fell asleep on the couch and Jon said I was hiccuping in my sleep for awhile. Go figure! Tomorrow is my last chemo day - I’m so excited to finally be done with the treatments and to be closer to learning how well they all worked.
We now have our next visit scheduled. It will be a short one. We are scheduled for the PET CT Scan I mentioned yesterday for October 19, along with the blood tests. We will then meet with the medical oncologist on the 20th to get the results of the tests. This is the biggie! It should let us know if they were able to completely kill the cancer or not. I’m nervous about waiting another month, but I also know the time will fly.
Here’s a little snippet of our downtime in pictures-
More tar art. What do you see? I see a very long necked llama..
A different trail this afternoon - Cascade Creek Trail. It’s starting to look like fall.
A quick pose by a big tree 😁😍🥰😜🤪
This afternoon’s 5 mile path.
Oh no! We saw this in the street on tonight’s walk. I hope it’s not all that’s left of Mr. Bill! Google him if you don’t know who he is. 😁
Long Busy Day
Today was a long and busy day, so there is much to write about. I’ll try not to get too wordy.
We were on the Bear Creek trail by 6:30 for my morning walk and Jon’s run. I felt strong this morning so I made it past the 2.5 mile mark before turning around. The only problem was that I miscalculated time. I had to run part way back in order to have time to make it to my first appointment at 8:40. Keep in mind that “run” for me right now is barely a jog - slightly faster than running in place. Anyway, it felt great to be able to move a little quicker.
First appointment of the day was a blood test (and we made it on time with a coupe minutes to spare). Almost everything was back in normal range and those that weren’t were in expected lower ranges. Kudos to my hard working blood!
Our next appointment was with the medical oncology PA, Rachel. We had a good meeting. She confirmed our suspicion that there is another scan coming. We will need return in mid October for a PET CT scan that will reveal if there is any new cancer occurrence and if the current tumor is "dead". If they were completely successful with radiation and chemo we may get a "pass" on surgery! We won’t know this for sure until after the mid October scan. Regardless of whether there will be surgery or not, there will be monitoring (with various scans) for 5 years. Because my cancer is rare at least the first two years will be on a more aggressive (frequent) schedule. Gaining more understanding of the longer term plan helps take some of the anxiety away.
Chemo was next on the schedule. Yuck! It was pretty uneventful…but long. I had about 60 minutes of all the pre-stuff (saline, steroids, and anti-nausea meds), then 2+ hours for the first chemo drug, and then 60 more minutes for the second chemo drug. The downside is that because they filled me with so much fluid I had to pee every 20-30 minutes, which meant unplugging my IV pole and wheeling it to the bathroom with me. Thus far I’ve made through the day with no nausea.
I’ll finish the post with some photos.
Morning walk on Bear Creek Trail.
Afternoon walk also on Bear Creek Trail.
So now I understand why it’s called a “medicine” cabinet!
I was sitting on the couch tonight and felt all these eyes looking at me. It looks like the angry ghost was getting ready to throw a fireball at us! I’m glad I looked up when I did.
Travel Day
Today was a travel day back to Rochester. Delta does an amazing job doing everything they can to keep you safe. We flew into Minneapolis and then had a little more than an hours drive through beautiful countryside to get to Rochester. I had been dreading the return trip because of how the chemo, and subsequent medications, make me feel. But once we got to our apartment it actually felt kind of good to be here knowing this could be our last extended visit. I guess I’m ready for tomorrow and whatever it brings! I’m ready to get this last cycle of chemo behind me!
This morning’s walk before leaving Kalamazoo.
The crane has been assembled and now looms behind our home!
This is the house across the street from our apartment in Rochester. I think they are into Halloween.
Busy Day
First of all, I’m happy to report that today was another good day. It was a busy day. I got in my four walks (two with Jon and the boys, one with just Jon, and one by myself) - almost hit 13 miles in total. Did a little sun printing but the sun kept going behind the clouds so I gave up pretty quickly. We also started packing for our trip back to Mayo tomorrow. We are only gone 8 days this time. I’m anxious to finish this last cycle of chemo and even more anxious to learn what the ongoing care plan will be.
Sun prints baking in the sun…
Another game of bean bag toss after a delicious paella dinner hosted by Herb and Beth.
Yes, I’m wearing my winter hat in near 70 degree weather - I’m always cold now!
Leftover Goulash…👨🍳
Today was another good day. However, the better I feel the more I dread going back to Mayo next week for more chemo. But on the other hand, I’m also anxious to go back because it will be my LAST cycle of chemo. I’m also a bit nervous about meeting with the surgeon on the 21st. I think from the get go the possibility of surgery scared me more than anything else. My fingers are still crossed that surgery won’t be necessary.
Even though I don’t have much of an appetite I’ve been craving goulash for several days. The funny thing is that I probably haven’t had goulash in more than 30 years - so why now? I made it for dinner last night and then had leftovers for dinner tonight.
Oops…Forgot a Title 😲
Good morning! I fell asleep last night the minute my head hit the pillow and woke up a few hours later with my iPad on my chest. Consequently, I never even started my blog post.
Yesterday was probably my best day yet. No nausea! And only a couple minor episodes of pain. There were a lot of little wins that made it the best day. I reintroduced a couple foods I had cut from my diet and I seemed to tolerate them with minimal affect. That’s a plus in my book! I dinked around in my studio for awhile, which felt good. I also cooked in the afternoon. Standing in place has been problematic but I didn’t experience any of the usual pain while standing and cooking - that’s a huge change for me.
Erecting the crane for Jon’s latest building project.
View from the office window.
Rinse, Repeat
The “good days” continue. Today was a “rinse, repeat” of yesterday - no nausea. Pain level about the same…maybe slightly less.
From a distance I look like a white haired older gentleman. Up close you can see my hair continues to get thinner. I wonder if the next round of chemo will knock the rest of it out, or if what remains is going to hold on for the long haul.
Jon and the boys on our evening walk tonight.
Keeping it Short, Again.
Today continued the “good day” streak. I almost feel normal until I look into a mirror and see this thin white-haired man looking back at me. No nausea today! The periodic pain continues to be a challenge. But I can tell it’s changing….slowly now, but nonetheless changing. Overall I think I feel better each day which in some ways makes me dread my chemo next week - but then I remember it’s my last round of chemo and I’ll reach another milestone.
I played in my studio for awhile today, which felt great. Assembled a shelving rack to pile more stuff on because you can NEVER have too much “stuff” in a studio. 😁
Nonla burgers with Andrew and Jen again today for lunch. I think this is my new favorite burger joint! Is it the food or is it really the company?
P.S. I just noticed that I haven’t been posting any pictures with my posts. I’ll try to correct that going forward.
Fear to Hope
All in all today was another good day. Nausea was pretty subdued - less than a “1” on my scale. Rear pain was more severe today than it has been for several days. Most of the pain is caused by the muscles you use (that you really don’t know you’re using) when going to the bathroom. The (other) rear pain [from just standing] remained minimal today.
I mentioned in a previous post that last Friday was 12 weeks since my diagnosis. Today was 12 weeks since my first appointment at the Mayo Clinic. So much has happened in these past 12 weeks. I’ve experienced the devastation of bad news, a lot of fear, shame and a loss of dignity, and some of the worst pain of my life. But I also experienced the joy of good news, the comfort in the trust I have with my medical team, and HOPE. With Jon’s help I learned how to challenge the feelings of losing my dignity and how to understand there is no shame in how my body was responding to my treatments. No matter what I experienced I was never alone. Good or bad, it is all part of the journey necessary to rid my body of this cancer.