The Scan and the Plan

Waiting for my connection in the Atlanta airport last Friday, I checked my email and excitedly opened the message from Oklahoma Cancer Specialists and Research Institute (OCSRI). A link led me to my PET scan results. Put into everyday English, they said no spread of cancer. It is confined to my right breast.

“Yes!” I whispered and set about to give the good news via Facebook. What a wonderful way to start a Kentucky weekend with my brother Bob and his family!

 And a grand weekend it was. But this is a cancer blog, so let’s go on to the next thing: today’s appointment with my surgeon. She is kind, professional, and explained things very well. My mind is still spinning several hours later with new information and what it all will mean for the month of September and beyond.

I have an aggressive invasive cancer, likely triple negative again. It is smaller than two centimeters, which means surgery first and then chemotherapy. I won’t know anything about the chemotherapy regimen until well after the surgery.

To prepare for the September 4^th outpatient surgery, I have a lymphedema education appointment on August 27. (That is just in case I develop lymphedema someday due to the removal of one or more lymph nodes.) I should receive a phone call soon to set the pre-op appointment in which various tests are done.

What follows the mastectomy is not what I expected: weekly appointments for the first month. That is the easy part. The harder part will be being laid up for an entire month. Dr. Flynn summed up the activities to which I should limit myself for optimal healing: rest, eating, and personal hygiene. (But no showers.)

There go my plans to work from home. “Typing?” I asked. “That’s not one of the three,” she answered with a smile. Talk about disappointment! But as I’ve thought about it, I will need lots and lots of rest without the pressure of accomplishing anything. Who knows? By the end of September, I might have the mental energy to do some reading.

Still harder is the thought of not seeing my grandchildren for an entire month. They are young enough and rambunctious enough to make visits unwise. No singing “The Wheels on the Bus” and “Patty Cake” complete with motions for 15-year-old Benjamin, who has Down Syndrome and autism. No pretend play with 11-year-old Joelle and 6-year-old Ava. No big hugs that almost knock me over from 9-year-old Josiah, who has autism. And no dancing with 2 ½ year-old Elijah.  I guess we will visit over FaceTime.

And I’m not thrilled by the idea of limiting my blog updates to rest my right arm and chest muscles. Pray for me during the possible silences. As you can see, the reality of giving up my regular routines is hard to bear.

But I must dwell on the positives, which include meals from Hopestone, our local cancer nonprofit. And light housekeeping from another nonprofit, ElderCare. And rides to medical appointments with various friends and acquaintances. And, best of all, the constant company of the Holy Spirit to comfort and encourage me. I’m quite sure there is plenty to learn in long recoveries.

 

               

Brief Update

 Tomorrow (August 14) I will get a whole-body PET scan at OCSRI, Tulsa.

Today

Today I received my diagnosis: high-grade ductal carcinoma in situ. Let me translate.

High-grade means aggressive/fast growing. Ductal carcinoma means cancer that has formed in the milk ducts. In situ means within the ducts.

Dr. Moussa gave me the starting plan: first, OCSRI will call to set up an appointment for a whole-body PET scan asap to determine if the cancer has metastasized (in other words, spread). If I’m all clear, then the next step is a mastectomy.

I’m somewhat shaken by this definitive diagnosis but also relieved to be back in Dr. Moussa’s care.

The drive to and from Tulsa OCSRI was no problem. I spent it praying and singing and praising God. I needed that time.

And I’m looking forward to a week from today when I’ll be on my way to see my brother Bob and his family in Kentucky for the weekend. 

Timeline

Friday, July 5, 2024

Lump discovered. Tried to schedule a mammogram myself but mentioned the lump, only to learn that I needed a doctor’s referral for a diagnostic mammogram. Appointment with my ARNP. Referral for mammogram sent. Received a scheduling call and found out the referral was incorrect: instead of diagnostic mammogram, it said screening mammogram. Called doctor’s office to ask for another referral.

Long weekend . . .

Monday, July 8, 2024

Received a scheduling call and asked for the soonest appointment possible. Result? 11 a.m. on July 16.

Long week . . .

Tuesday, July 16, 2024

The mammogram technician took multiple views. The radiologist requested an ultrasound. The ultrasound technician had difficulty locating the lump. In consult with radiologist, no one said the “C” word, but he recommended a biopsy and suggested I schedule with breast surgeon. Imaging sent to my primary care to do the referral. I left a note with information at the doctor’s office. Unfortunately, my note led them astray.

               

That week . . . (lost track of days)

A call from doctor’s office that referral was rejected by OCSRI (Oklahoma Cancer Specialists and Research Institute) because they do not perform biopsies. I gave the nurse what was listed online as the breast surgeon’s contact information (in Tulsa).

Call from imaging to schedule me for biopsy locally. Declined, determined to reach the breast surgeon.

Could not find breast surgeon’s office or even phone number despite multiple calls to Ascension St. John’s, Tulsa. Was eventually referred to hospital scheduler and found out that the breast surgeon rarely does biopsies, but he could schedule me for one with someone else at St. John’s in Tulsa. I said, “No thanks,” called the Bartlesville hospital and scheduled. (Why drive the hour to Tulsa when I could have the biopsy locally?) The soonest appointment was July 31^st at 1 p.m.

Gradually realized I had been given incorrect information from radiologist. Temper rose.

 

Wednesday, July 31, 2024

“Lesion” of about one centimeter at the 3 o’clock position very close to chest wall, requiring radiologist to perform biopsy from side instead of top. Learned during pre-biopsy conversation that the last time he had done a breast biopsy was in May. A little rattled, but I put up a good front. Second try was successful, but he forgot to leave the marker, so had to do a third entry. (Fortunately, the local anesthetic worked well.) Radiologist or technician said my doctor’s office would call me when they received the pathology lab report.

Long weekend . . .

Tuesday, August 6, 2024

Called doctor’s office to see if lab report was in. It was, but since my primary care person would not be in until Wednesday, it could not be given to me. (He had to see it first.)

 

Wednesday, August 7, 2024

Stopped by doctor’s office. Pathology report is not yet available to me. Received call in the late afternoon that it was in and I could pick it up in the morning.

 

Thursday, August 8, 2024

Picked up pathology report. Sat in car to read it. It didn’t seem right, only reporting that my estrogen and progesterone receptor classifications were negative. Drove into work and read through it again. Noticed it was titled “Addendum Report Surg.” Realized I must be missing the main report.

Finally did what I should have done (but never thought of) in the first place on July 5: called Tulsa OCSRI to schedule an appointment with my oncologist who treated me for breast cancer eight years ago. Received an appointment for tomorrow morning at 9 am!