Original post 4/16/08
The technician who did the PET scan told me it would take 24 - 48 hours for the radiologist to read the scan, write the results into a report for the oncologist & record it on the hospital system. I was sure I could get the results by Mon., Dec. 17th; so, I called Dr. Patel’s office. They weren’t available. I tried again Tuesday. Still I had no luck.
Both days we had family & friends calling, sending emails & asking us in person if we knew the results yet. We are frustrated & getting very anxious. Wednesday, Ed & I decide to double our efforts; I call Dr. Patel’s office & he calls the Breast Health Center. We wait to see which one of us will get a call back 1st. Ed wins. The nurse tells him the PET scan shows some activity & that Dr. Patel wants me to come to his other office, which is an additional 1/2 drive from our home, the next day. She makes it sound rather casual & minor so that we assume he probably is bringing me in to tell me that he wants to run some other test before next week’s appointment.
Ed has a busy day at the college that includes a couple of important meetings. I tell him that I will be fine to go by myself & insist that he stay & attend the meetings. He isn’t keen on the idea of me going by myself & repeats that he can arrange to take me to the appointment. I insist that he stay at the college. As I think it over, I decide that it will be better to have someone go with me, to take notes. I do have a tendency to forget some details when I have to recount 30 – 60 minutes spent talking with a doctor. If someone else takes some notes, I can reconstruct the conversation pretty well.
(You are wondering how I have written my story & blogs, aren’t you? The appointments are marked on a calendar; we have a notebook with notes from every appointment; & I have emails I’ve sent to family & friends over these several months. These are all great references.)
I call a friend who is a nurse who had offered to go with me to appointments, but she is out of town. My sister, Jennifer, just happen to call to see if I am at home, because she has something she needs to drop off to me. When she arrives, her 2 daughters, Hannah & Lydia, are with her. Lydia meets me first, with a big grin on her face, & she holds out a handful of handmade cards. Her second grade class has made get well cards for me! I nearly cried! It is so awesome! I read each one. They all address me as Aunt Patti, which I think is so sweet. They drew lots of hearts & flowers, both of which I love! I will keep them forever. For many weeks, I show them to everyone who comes to visit. After raving about the cards, I tell Jennifer about my appointment with Dr. Patel the next day. She says she is available to take me.
Thursday morning, I stop at Meadowbrook Christian School, where my nieces attend & Jennifer is volunteering that morning, to pick her up. I tell her that I typed up a list of questions & left room for her to write Dr. Patel’s answers. I have never been to this office before; so, I have done a map quest to locate it. We can’t find a sign for the street we are supposed to turn onto; we make an educated guess & find the office with little trouble. Thanks God!
When we see Dr. Patel, I introduce him to Jennifer. She has the list of questions & her pen all ready to fill in the answers, until he announces the results of the PET scan. At that point, she immediately flips the list of questions over & starts writing on the back, which was blank. His 1st statement is, “The PET scan shows intense activity.” I am thinking, ‘This is not what the nurse told Ed yesterday!’ Dr. Patel explains further that I have stage IV metastatic cancer. I have WHAT? (F.Y.I. 1” = about 2.5cm) There is another 2.3cm of breast tissue that is malignant; 4 more lymph nodes under my left arm are malignant, the largest is 3.2cm; multiple lymph nodes in the mediastimun (area behind & around the breastbone) are malignant; there are small nodules on each lung that are malignant. When this scan was done it was a combination CT/PET scan. The radiologist noted that when comparing it with the CT scan in September to this scan, the malignant lymph nodes & nodules on the lungs have increased in size & new spots have appeared that were not evident in September. Dr. Patel says that most of the lymph nodes are less than 1 cm. I find it interesting that 4 physicians, 2 oncologists & 2 physician’s assistants have physically examined my breasts & arm pits for tumors & never found any. The only one I found was the one that was biopsied, only because it caused shoulder pain. That’s what sent me to the doctor in the first place. I thank God the cancer went to that lymph node to alert me to the fact that something was wrong, & I thank God that I did not ignore the pain!
Now What? My head is reeling! My peace is teetering! I am sending up an S.O.S. prayer. I try to maintain my composure so I can ask questions. Jenn is trying to make sure she is getting notes written down accurately; so, she asks questions to clarify Dr. Patel’s statements & explanations. I can tell that Jenn is also shaken by this unexpected news, & it is making her rather nervous. As Dr. Patel repeats something, it either helps me to get it straight or gives me time to think. There is so much in this PET scan report! I ask if I can have a copy of it. Dr. Patel goes to find a nurse to ask her to make a copy. When he steps out, I grab my head & want to collapse & cry. I am shaking, but I take a BIG, DEEP breath & say aloud, “I can’t let the enemy steal my peace! I can’t let the enemy steal my peace!” Jenn reassures me, “That’s right!” I know she would like to say more but is too overwhelmed by what she has just heard to put her feelings into words. I also state that God has told me at the very beginning that “this is not a death sentence, and I know God doesn’t lie.” I tell Jenn, “I would have been so stupid to come to this appointment alone!” I also tell her that I am glad I have a family member with me for an appointment like this! However, she tells me she doesn’t want to go to any more appointments with me. I can understand her not wanting to go on that kind of appointment, because I would prefer not to go to this kind of appointment again. However, I know she loves me & would do anything I ask her to do. It is very hard when you are blindsided, as we are this day, to react in the way you think you will, in this kind of unexpected situation.
When Dr. Patel returns, I think he ask if I am OK. I want to know, “What does this mean?” There is a fleeting thought of life expectancy, but a stronger plea for ‘what can you do to help me survive?’ which my question does not express very well. He says that he knows he already dropped a ton of bricks on me & does not want to discuss that at this time. His follow-up leads me to believe that he took my question & pleading look to mean, how long will I live, because he says that we will discuss more at our appointment next week. I seem to remember him making some reference to his reason for not discussing life expectancy, because I think I remember telling him that God told me, before I got the results of the first biopsy, that the biopsy is malignant but the cancer is not a death sentence. He affirmed my positive attitude & outlook.
Surgery, which had been tentatively scheduled for January 8th, is off & so is the radiation. Instead, I am to have a MUGA scan done the next week, to be sure my heart is strong enough to handle chemotherapy.
I have done some reading & ask if Dr. Patel recommends a PIC line or mediport, so I will not have to have an IV put in each time I have a chemo treatment. He tells me a PIC line is just asking for trouble. He has already scheduled an appointment for a mediport to be inserted next week, so chemo therapy can begin the 1st week of January.
All of a sudden, things seem to be moving too fast, & Ed isn’t there to say, “OK, let’s go, or hold on; we have some more questions; this is moving too fast.” As much as we have wanted things to move a little faster, this is more than a little scary! I just learned, less than half an hour ago, that my cancer has metastasized & is stage IV. I need time to think, talk this over with Ed, & time to get the 2nd opinion we were seeking.
I ask if I can see the actual PET scan on the computer screen. Dr. Patel goes to set it up for us. While he does this, I tell Jenn about my experience at the VA Christmas Spectacular when God told me, “I am the God that healeth thee from the top of your head to the soles of your feet.” As much as I want her to know this & to find some peace in knowing it, I need to remind myself. It helps bring my focus back onto God, His promise & His ability to help me through tough times; I am able to reconnect with the peace that comes from Him.
We look at the scan. The middle of my chest looks like someone painted black polka dots all over it. (I later learned that the radiologist sees a color version of the scan. Specific colors indicate whether or not a site is malignant. If it is cancerous, the color indicates the intensity of the metabolic activity at each site.) It satisfies my curiosity, but is a little unsettling, at the same time. While we wait for the receptionist to schedule appointments, I ask Jenn if she will call Ed & fill him in on some of the information we learned at this appointment. Of course, he is shocked & says he will be home as soon as his last meeting is over; he asks Jenn to drive me all the way home!
As we leave, I ask Jenn if she would mind taking me to 2 stores to pick up 2 Christmas presents that I cannot find at the mall closer to home. She agrees. Then I ask if we can stop for some lunch; I am starved. She is a little taken back by my side-trip. It helps me to keep things in their proper perspective. My grandson & unborn granddaughter, for whom I am buying the Christmas gifts, are much more important than the pity party I could have for myself that afternoon. Worrying & fretting cannot change the diagnosis, & God is in control of the outcome.
Jenn tells me later that she called Ed, after she dropped me off at the mall door & went to park the car, to make sure he isn’t, in her words, “freaking out,” after he had a little time for the news to sink in. He isn’t; he is just anxious to get home so the 2 of us can talk about the appointment together.
When we get back to MCS, I tell Jenn I can drive home. She tells me she promised Ed she will drive me all the way home. I assured her that I can drive the rest of the way home. She is convinced by my shopping trip & stop for lunch that I am able to do so. She later tells me that she commented to persons, who inquired, upon her return, that I was amazingly calm. I can’t say it is because I am naturally a calm person who can handle devastating news. On the contrary (just ask my family), I am able to handle this because God gives me a “peace that transcends understanding.” I don’t even understand it, but I PRAISE GOD FOR IT!
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