It is a Wednesday, mid July 2023. Today I will drive the 37 miles to pick up my daughter, then drive the 43 miles where our Mother daughter adventure begins.

This approximant amount of miles could get us to the Dane Co airport, where we could board a plane for an adventure in the sky.. A flaw in this plan would be ,my daughter has never had any desire to board a plane and fly anywhere. Ironically she suffers from Chiari Malformation. A condition in which the brain spills down into the spinal cord. She has had decompression surgery, as well as other treatments. For her to fly would be like any of us flying with an extremely bad sinus infection. With the same flavor Autumn Joy lives her life, she has a bumper sticker and a T-Shirt that say “If you think my Boobs are Big, you ought to see my brain” 🙂

Olbrich Gardens in Madison would be another great place for an adventure. We could see all the plants, gorgeous flowers and the butterfly’s. But being my daughter is addicted to her power washer, I am sure she would notice many areas that she would deem in need off a little extra TLC.

Instead our adventure begins as we travel to the fifth floor of the parking ramp, take the elevator to the first floor, walk across the pedestrian crosswalk, people both behind and in front of us, some coming and some going. Inside is a little like a round about, you stay straight after going around a few things. Hear we are our adventure begins, as we walk through the entrance to the UW Carbone Cancer Center.

Our day begins with lab work. This is where they not so gently put an attachment on to the port that was placed 3 months earlier. This port give them access to her veins. Fortunately they can both take blood out and run chemo through this same port. There is a valve in her port that has to be reopened each time by the attachment. I remember from having antibiotic infusions, that this little procedure isn’t pleasant. Thus she has to apply lidocaine to the area 45 minutes prior to lab work. She forgot to bring it (ONCE!).

After the lab work we wait. It takes 1 hour to get the results. One part of these results will tell us whether she is in need of a blood transfusion or not. If she needs blood that will be given after all the chemo runs. She gets immunotherapy for 38 minutes, followed by first chemo which takes 85 minutes to run. She then is hooked up to the 5 F/U chemo which she wears home and it runs about 46 hrs. Running time varies depending on a persons body temperature.

With the stage 4 stomach cancer bleeding from stomach has been an issue. The ER could give transfusions, but were unable to run any tests, which had to be ordered by a primary, without insurance there was no primary. So it was Stage 4 by time it was diagnosed. Now you can get upset and angry (which I did), and she did, but we had both seen people allow this type of anger to totally destroy and control there lives. I am not saying pretend your not angry or hurt. What I am saying is let it be a wayside, a place to stop for rest, with time to regroup. But don’t turn it into a campsite, a place to unpack your bags and live. There are no winners in that case scenario.

The blood work also gives them the information to prepare her chemo in a more balanced patient specific way. The UW chemo is prepared at a special lab across town. Thus adding another hour between labs and actual chemo time. There is a lot of wait time, but they are very good at working the other necessary appointments in those time slots.

This will be a day we meet with the oncologist to discuss the probable relationship between the repeated bouts with chest pain following chemo. Four chemo sessions, four bouts with chest pains.

It was decided that the 4th of July holiday would be safest for her if they skipped chemo. So today is our first day back in 2 weeks since that decision. So it has been 1 month since her last chemotherapy.

Since that last chemo she had CT scans of stomach, abdomen and pelvis. These scan results greatly factors into the discission as to whether to continued chemo. Though the abdomen and pelvis are difficult to get good scans, they appeared to be less cloudy, which reportedly is a good thing. No change in stomach lining, which means nothing got better, but nothing got worse.

After much discussion about these findings, as well as Autumn’s report of some returning stomach pain in the month without the chemo , they left the decision up to Autumn whether to go one more time or not. Though the probabilities are high for the returned chest pain, for her to say No was for her to quit, and that is not in her DNA. This was with the understanding, that if chest pain returned, she was to go to ER and there at that point will be no more discussion, she would be withdrawn from her spot in this stage four cancer, chemo study. Though reportedly this reaction is unusual, she is following the exact symptoms of those that have had react to 5 F/U chemo.

So with this new plan in place we now return to the waiting room, which at 4:30 pm is like a ghost town. It will take an hour to prepare the chemo. Very exciting that her hemoglobin was 9.6. Below 7.6 is transfusion time. 9.6 is an Autumn win! Though normal is more like 12 – 13, her hemoglobin has not been near normal in the nearly 2 years that they have been testing and giving her blood. She usually gets 2 units. She said “At first mom it grossed me out. Then I started naming my donors and it was fun, funny and less gross. The last too on June 28th were Tina and Aaron:) She also says thank you, and prays for them. She said ‘If you have to ever write an obituary I want it to end with a special thanks to each of them. I want each of these names listed.

Soon her Chemo will be running and after that 2.5 more hour we will, we will once again walk across the pedestrian crosswalk, much less people behind, or in front of us, very few coming, mostly evening staff. We take the elevator to the fifth floor of the parking ramp, drive her the 43 miles home, then drive myself the next 37 miles to my home. I was so grateful to see my bed, which I fell into it about 30 minutes after getting home. It was 9:30 and I am exhausted. And yes this is pretty much a chemo day. Depending on starting time. Today was a little later. You figure 7 hours, plus driving time. We do a little laughing, maybe tears, sprinkled with an disagreement or two. These are long, exhausting days but full of very cherished moments.

Habakkuk 3:17-18

EVEN THOUGH the fig trees have no blossoms, and the are no grapes on the vines. Even though the olive crop has failed, and the field lie empty and barren. Even though flocks have died in the field, causing the barns to be empty..

I WILL STILL TRUST IN THE GOODNESS OF MY GOD!