I get this question a lot. Up until recently my answers have centered on the physical sensations and energy levels I "feel" in my body. I was not expecting my emotions to be so incredibly muted during this first stage of my healing process. My new answer to this question is...
"I am feeling hopeful."
I met with the surgeon this past Thursday for suture removal and follow-up. Only 5 minutes before our appointment he had received the pathology report on my tumor and was eager to share some highlights. He said the tumor was a grade 2 (slow growing) and "well-differentiated" (behaves like normal cells). Basically this is good news and means that this tumor had likely been growing for "many" years. More on understanding the terminology here. He also said, with cautious optimism, that he thinks I may not need further treatment at this time. The tumor board meets next Thursday and will make a determination at that time, but this feels very much like an answer to my prayers (and yours) that this would be a "one-and-done" process.
Keeping in mind that Dr. Alseidi's initial report before surgery indicated that it was unlikely he would be able to remove ALL of the tumor, I am still processing the magnitude of this miracle.
Measurement, calculation, numbers . . . are not the substance of my language most of the time, but in terms of understanding magnitude, I find the following helpful...
By the numbers:
7: roughly the number of hours I was under general anesthesia / in surgery
39: the number of staples (27) + sutures (12) that held my abdomen together after surgery - now removed (yay!) and replaced by steri-strips, to remain in place until they fall off.
12: the length of my scar from the surgery incision in inches...stem to stern so to speak (more literally, it starts at the bottom of my sternum and extends down to well below my belly-button)
35-40: "35-40 what?" I asked when he answered the question "Does the report list how much the tumor weighed?" He said he couldn't find it in the report at first glance, but having carried it away on a tray, he estimated that it weighed 35-40 pounds. . . . "WHAT?!?!". Yes, that is what he said - and it feels impossible. I have dropped about 20 lbs. since before the surgery - and according to Dr. Alseidi, patients often gain about 15 lbs. after surgery due fluids during the healing process . . . so I guess this makes sense - and I should prepare for further weight loss as I heal, which is why he encouraged me to push myself a bit on eating a little more. I've only lost one pound this past week, so I suppose my efforts are paying off.
2-3: number of months before I will start feeling normal again (though it could take as long as 9). Basically, I'm in for a long healing process.
30: number of minutes that I can stand or walk before needing to rest. It's nice to be up and doing stuff . . . and don't worry, I am NOT overdoing it. Jason keeps a close eye on me and I have promised to ask for help if I need it. My only official restrictions are no driving and no heavy lifting.
The Road Ahead
I had begun to prepare myself, and even entered in to some degree, a grieving process in terms of my loss of function, accentuated by the uncertainty of what I might learn at my upcoming oncology appointment. Forming a "NOT-to-do" list was affirmed by a post the very same day by Candace McCallister. I highly recommend her reflections on Caregiving and Grief. With this hopeful news from Dr. Alseidi, however, I have felt a shift and a readiness to focus on healing and gratitude and accomplishing reasonable tasks in the coming days, weeks, and months. I am hopeful that I will, slowly but surely, regain my functioning. My remaining kidney is strong. Life without a spleen mostly means that I need to follow a schedule of meningococcal vaccinations and boosters. My gastrointestinal tract was cut in three places, so eating does cause some discomfort but as I heal, eating should become more enjoyable. And I have learned that diaphragmatic pain does radiate into the shoulders. The pressure on my diaphragm from the tumor was likely the cause of some significant pain I was experiencing in my right shoulder and bicep before surgery which is now gone. Now that the diaphragm is healing from some cutting to remove the tumor, it is in my left shoulder where I will feel some sudden sharp pains at times. The tightening of tissue in my abdomen causes new pains on occasion - but all of it is manageable and feels like signs of healing.
I feel incredibly grateful for all the support I have received, from home visits to prepared meals to cards and text messages and phone calls and daily scriptures to keep me encouraged. My father returned home yesterday and Mateo has been here for the weekend. Tomorrow will be our first day on our own, just me and Jason. I'm confident we will be just fine and he is caring for me and all that we have been given here at Waypoint well. I have never felt as strongly as I do now that I can rest in the bold confidence of God's care. Whatever you are facing, be encouraged. God is up to something and will be faithful to complete the work that has begun in you.
I will likely follow-up after I have more specific news from oncology next weekend.
-Dawn Noelle
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