Chemo Round 3. Day 4.
Today was better overall, and I'm hopeful tomorrow will be even better
Today's low. My hair is shedding heavily.
Today's high? Time with Clara.
Chemo Round 3. Day 3.
Today has been pretty awful with nausea and fatigue. I went down to the beach this morning but had to cut my walk short due to tummy issues.
I've been in bed all day. I guess this is what Dr. Robinson meant by the effects of the chemo would be cumulative.
Hopefully tomorrow will be a better day.
In good news today, Inhibin A and B are both slightly down for the first time since starting treatment. Maybe it's working!
Chemo Round 3. Day 2.
Today was fairly uneventful.
I did make it to the beach this morning and walked about 3 miles. Running is getting more difficult, probably due to my low RBC.
I was able to go to Trader Joe's, Harris Teeter, and Whole Foods to get some groceries, and I enjoyed my lunch, despite the nausea.
I did get a rash from the steroids again, so I look like I have a sunburn.
This afternoon I had a post-chemo massage at the Zimmer Cancer Center.
I've rested a lot today, so this has been my view.
Jared and Rachel came over for dinner tonight. That was the highlight of my day.
Chemo Round 3. Day 1. May 18.
Today my lab appointment was at 7 am. I saw Dr. Robinson and Tiffany between 8 and 8:30, and my infusion started about 8:45. My day ended before 7 pm when Crystal removed the final cap.
For the first time, I was able to nap, and I napped hard for about 2.5 hours, stirring only when the cold caps were changed every 25 minutes.
Surprise of the day? I got a private room! It was a luck of the draw thing, and it was wonderful. I am sure that contributed to my ability to nap and relax, despite it all. Thank you, Jesus, for small blessings.
Jared brought lunch and came back to the house with me and Crystal when we finished at Zimmer a little before 2. Vince Rogers came to visit for a couple of hours late this afternoon, so between their visits and the nap, a very long day was made so much more bearable.
I am dealing with substantial nausea today, as well as pronounced food aversions, but overall I’m still feeling strong and hope to go to the beach in the morning.
This was the last cap of the day. It felt so good to take it off!
I saw this today for the first time, and it summarizes my outlook as I continue to “get busy living” between these days I would never have chosen for myself.
Chemo Round 2. Cold Capping.
My next round of chemo is on Monday, if all goes as planned. My hair has stayed healthy through this cycle, but the last few days I have been shedding excessively. The bald places around my ears are prominent, and my hair is thinner overall, but I do not believe anyone would look at me and know that.
This whole air dry, no brushing thing has led to curly waves I never knew I had. Then there are the “I haven’t washed my hair is almost a week” days when my hair is as straight as it’s ever been.
We will see what Round 3 brings.
Chemo. Round 2. Week Three. Monday.
The Lord is faithful to all His promises and loving toward all He has made. Psalm 145:13
I had my scheduled labs and visit with Dr. Robinson this morning. Here's what I learned.
1. Dr. Robinson has been in communication with Dr. Rossi.
2. My ANC is a bit low, but looking at past trends, the Zimmer team believes it will be high enough by next week for me to have chemo on Monday, May 18.
4. The only thing concerning with the blood work was liver function. Last week's results were not an anomaly. I do have impaired liver function, with Alkaline Phosphatase trending up further (335 U/L) since last week while ALT and AST, though elevated, remained consistent.
5. My RBC and WBC are low, but not critically so.
And there's one more thing. I stumbled getting onto the scale this morning, and the nurse saw it. I hadn't really thought about it, but I stumbled twice last week, once when turning to the side and once when looking up. As this became a topic of conversation at the doctor's office this morning, I had to admit I've stumbled quite a few times recently. Why is this? To be safe, Dr. Robinson has ordered an MRI of my head. The MRI has been scheduled for May 28 at 5:45 pm.
I had a telehealth visit with Dr. Rossi this afternoon. It’s been a while since we spoke, and I realized how much I have missed her. Some hightlights of our discussion:
I affirmed to her that the enlarged lymph node noted on the recent CT is getting smaller. She would like to make the same assumption about the rest of the disease we saw on the scan.
She agreed with Dr. Robinson in that it is unlikely the metastasized cancer is compromising my liver function. But the question is: What is having this effect? She will have Dr. Zani take another look at the scan and offer his insight. Further, Taxol is metabolized by the liver, so Dr. Rossi will talk to the clinical pharmacist at Duke to see if she can offer any insight.
Dr. Hillman, Dr. Rossi and Dr. Robinson all agree. As long as we’re seeing response and my body can tolerate chemotherapy, we should continue getting this systemic therapy into my body as it’s the best way to combat widespread metastasis.
If I need further intervention, immunotherapy might be our next option, though it might prove difficult to get it approved by insurance, but we will deal with that when the time comes.
Dr. Rossi wants me to complete a minimum of 6 cycles, and she wants me to be open to the idea of more cycles if we’re seeing success on scans but after 6 cycles there is still cancer.
In other news . . . Dr. Rossi noticed my hair while we were on the call. And yes! My hair is still holding on! Dr. Rossi said, “You’re a case study!”
It’s hard to just let my hair be and not wash it often and not style it at all, but (so far) the tradeoff has been worth it. I am thankful.
The Lord is faithful to all His promises and loving toward all He has made.
Psalm 145:13
Chemo. Round 2. Week 2.
1 Peter 4:10-11
As everyone has received a gift, even so serve one another with it, as good stewards of the manifold grace of God. If anyone speaks, let him speak as the oracles of God. If anyone serves, let him serve with the strength that God supplies, so that God in all things may be glorified through Jesus Christ, to whom be praise and dominion forever and ever. Amen.
Side effects have been minimal this time around, and I was able to spend this week ministering out of state.
I'm so thankful.
Chemo. Round 2. Day 4. Appointment with Dr. Robinson.
I came home to this amazing surprise from some dear friends. The card read in part: “My husband collects shark teeth, and he wanted you to have these. When he looks at them, he sees a creation of God’s that weathered harsh conditions and even though battered, survived. We hope these will be a symbol of God’s goodness, sovereignty, and love for you.”
Backstory. I recently asked Dr. Robinson for a CT scan because I have a lump in my lower abdomen that’s sizeable and has not gone away.
Labs and the CT. I had labs on Monday that indicated impaired liver function. I had the CT on Tuesday, and it indicated multiple sites of disease.
Today’s visit. I want to start out by saying I am so glad I am back in Wilmington for care. Dr. Robinson is pretty awesome, and it is so easy to pop over to Zimmer for appointments like this instead of driving all the way to Durham.
Monday’s lab indicated impaired liver function. Combined with the CT results, I thought Dr. Robinson would point to the cancerous nodules as the cause of that impaired function. Instead, he believes that the liver function impairment might be because of Taxol (one of my chemotherapy drugs), not the cancer. He has been leaning toward changing my chemo drugs anyway because Taxol is so harsh on the body and I have had platelet and ANC issues. If the decision is made to change my chemo regiment, we will likely choose Abraxane instead of Taxol.
He wants me to continue chemo, and he wants me to complete 6 rounds, if possible. The reason he had agreed to the CT at my request was because I have had a lump in my lower abdomen. The CT scan showed that is an enlarged lymph node, not a cancerous nodule, so he was confident that we're not in any great rush with making any changes to treatment at this point.
He wants me to have blood work and see him again May 11 with the goal being to have Round 3 of chemo on May 18.
I am going to Duke the afternoon of May 11 to check in with Dr. Rossi, and Dr. Robinson is aware of that. He also knows I have spoken with Dr. Hillman in San Diego. Dr. Hillman's opinion was to do at least 3 rounds of chemo before making any decisions, so this all tracks.
Dr. Robinson also said he had no problem with me traveling as planned the next two weeks. So, all in all this was a good and reassuring visit, and today he shared that he has other patients with recurrent GCT and has tried a variety of treatments with them. In 2023, that was not the case.
I came home to this amazing surprise from some dear friends. The card read in part: “My husband collects shark teeth, and he wanted you to have these. When he looks at them, he sees a creation of God’s that weathered harsh conditions and even though battered, survived. We hope these will be a symbol of God’s goodness, sovereignty, and love for you.”