I am so grateful for all of the support, encouragement, prayers, text messages, phone calls, visits, meals...everything. God has richly blessed me and my family with a beautiful tribe of people near and far that we are so lucky to call our friends and family. This experience has been frustrating and stressful, but also humbling and encouraging at the same time.
Wednesday afternoon, April 19th, after paying a small fortune to the hospital and also taking care of my pre-op blood work, I had a near panic attack regarding the surgery itself and what it entailed (the surgical mesh, the recovery, this void in my abdomen, to name a few). I called the doctor's office, in hopes of speaking to a nurse, but got to speak with my surgeon himself! He patiently re-explained to me what his plan was, how the surgical mesh would work, and also assured me that this was the best and only option for what we were dealing with. He is so fabulous, and I am so thankful we were referred to his office.
My surgery was Friday morning, April 21st. Our arrival time got pushed back by an hour, so we didn't have to leave our house as early as we had originally planned. We arrived and waited to be taken into the triage area. My surgeon came out, dressed in a suit and tie, and greeted us in the waiting area. He's just so friendly and calming (and a few might say he is pretty "hunky"...ahem...my grandma). Anyway, a nurse came and took us back to start getting prepped. She took vitals, and then was successful in putting in the IV on the first try, which is apparently rare for me now. She was so pleasant and kind, so that was a nice start to the day.
Our doctor came into the triage area with a med student and told us he would see me in the OR. He told Heath where he could wait and that he would come and find him as soon as the surgery was over. Heath asked if he would pray with us, and much to my surprise, he did :)
Soon, my little curtained-off area became very "busy." The surgical fellow from my initial consultation appointment stopped by, said hello, and then left. Then the anesthesiologist and his nurse stopped by and talked to me about the drugs. I remember from the previous two surgeries that the anesthesiologist had offered me a "happy cocktail" to help me calm down before heading into the surgeries. I gracefully declined them on both occasions because even in my stressed out state, I wanted to be able to remember walking (being pushed on a gurney) into the OR mostly due to sheer fascination. This time, however, as I felt the waves of panic and fear coming over me, I asked him for something to help calm me down. There was a super nice woman there (I can't remember if she was the nurse anesthetist or a nurse who would be in the surgery) who kept telling me it was going to be an easy surgery and that if I hadn't been nervous and anxious, she would have thought something was wrong with me. She said it was totally normal to be having the heart palpitations I had been having and that everything was going to be fine. Thank heavens for encouraging people just at the moment you need them.
I don't remember much after that. They must have slipped me the happy juice shortly thereafter because I don't even remember being wheeled into an OR. Nor do I remember waking up in post-op/recovery. Honestly, my next memory was at the shift change that night...sometime around 7 pm. I have no idea who my nurse was during that afternoon, but I remember meeting Rashni, my nighttime nurse Friday night. She was very sweet, and had a fairly heavy accent, because I do remember not always understanding her. Perhaps that was due to the heavy amount of pain killers?!
I spent the next six days in the hospital. Overall, I had wonderful nurses who were kind and attentive. I had one super awkward and not-so-great male nurse; we just didn't really gel personality-wise, and he spent more time hitting on my friend (offering her ginger ale on the rocks and asking if she would be returning the next day to visit) than paying attention to my case and my pain meds :) We kindly asked the charge nurse for him to be placed on someone else's case the next day.
My surgery left me with an eight inch incision across my upper right abdomen, two JP drains (oh so fun), and an abdominal binder to help hold things together. My surgeon removed a large portion of my abdominal wall...5.5 inches by 3.5 inches and about 2.5 inches in thickness. The tumor itself was the full thickness of the abdominal wall, but thankfully had not adhered to my intestines. His goal was to cut out the tumor and the surrounding tissue so that the likelihood of it returning was low.
As I was waiting to be discharged, my doctor and two of his med students came to my room to discuss a few things, including the pathology report. The
good news is that the tumor was
benign, a fibromatosis/Desmoid tumor as he had suspected from the beginning. The
bad news, however, is that he was unable to get clean margins after all, stating that the tumor was touching my lower ribs. He mentioned that he didn't think it would be advantageous to remove portions of my ribs (thank you), but that there were microscopic fibers of the tumor left behind on not only my ribs, but also at the bottom of the sample he removed. What exactly does this mean? Well, it means that the tumor can still come back. But, to be honest, even if he had obtained clean margins, the nature of these tumors is so sporadic and unpredictable that it could have returned on its own anyway.
That was kind of a "Debbie Downer" moment for me as I was leaving to go home. All of this stress and worry and PHYSICAL PAIN for what seemed like nothing. Enter the bombardment of crazy thoughts about what happens next when it returns, and how will he remove it again if he has already removed so much? Will we have to explore chemotherapy or radiation? What will that be like?! I immediately asked him what we are going to do if it grows back. His response was so laid back. He said that for now, I needed to worry about learning to walk again, and just concentrate on healing and recovering, and that basically we will cross that bridge when we get there. Have I already mentioned how great he is?
So, that is what I have been doing, or trying to do at least. It has been incredibly challenging for me to recover. I am not a sidelines type of person (unless we are dealing with sports, in which case I should ALWAYS be a sidelines type of person). I don't love sitting around waiting for things to be done for me. We have been so blessed by friends and family who have brought meals, come over to help with the kids and also to help with things like vacuuming or hanging things on my walls. Did I mention that I hadn't finished unpacking before the surgery? We have unopened boxes still lying around and things of that nature just staring at me and I can't do anything about it. It is
kind of driving me crazy. My mom has been here since my surgery, basically taking care of the kids and their every need during the day until Heath gets home at night. I have fairly strict lifting restrictions, so holding or carrying Kenton is kind of out of the question. I had a home health nurse visit a few times to check my vitals and the drains, and also a physical therapist, but we decided that until the lifting restrictions are lifted, it is kind of waste of time and resources for now.
I have seen my doctor twice since the surgery, the first time being about ten days post op, and the second visit about three and a half weeks post op. Other than nearly passing out during the removal of the first drain, he said everything else seemed to be healing and moving in the right direction, and that he didn't need to see me for six months unless I needed something or was worried about something. At that time, which falls right before Thanksgiving, he wants an MRI to check my abdomen for any regrowth. Hopefully I won't suspect any more tumor formation between now and then, and we will have a clean MRI in November. My greatest risk right now is a hernia. I have to be so careful not to lift things, which let's be honest, is almost IMPOSSIBLE, especially when there are little ones. Also, sneezing, coughing and laughing too much are THE WORST as far as pain-inducing scenarios :)
I have included a few photos below. Nothing graphic by any means, but I did have my doctor help me understand exactly what was removed by having him draw on a Google image I found of the abdomen. #visuallearner #nerd
 |
| The blood typing bracelet they put on me before my surgery, threatening me hefty charges or surgery cancellation if I tampered with it or removed it! Crazy. |
 |
| A lovely gif we received the morning of the surgery. Nothing like a little comedic relief in the midst of a stressful moment. |
 |
| Lots of encouraging text messages and phone calls the morning of my surgery. Did I already mention that I have the best friends? There are so many more saved on my phone, but for whatever reason, they got a bit messed up when I tried to transfer them here. |
 |
| My favorite visitors in the hospital (no offense to the others) 😍😍 |
 |
| IV specialist was called in to fix my IV on day four, after I convinced my nurse that the IV was burning every time I received my meds. This lady was so great, and also told me that from here on out, I should request the IV A-team every time because I'm such a hard stick. :) I was sold on that suggestion. |
 |
| At home, snuggling my babies on the "good side" as Finley calls it. Kenton knows that I have a boo-boo, and that's about the extent of his understanding of the situation. |
 |
| Because I'm weird, this was one of the things I insisted on accomplishing the night before the surgery. Boy am I glad, too, because I have been staring at it for five weeks now :) At least I have something fun to look at (besides unpacked boxes and things I can't put away because of their weight). |
 |
These were a couple of the images I took to my doctor. The first one kind of illustrates a cross section of the layers in the abdominal wall. He outlined where the tumor was, and then kind of added what would be my bowels/intestines, showing that the tumor thankfully had not adhered to any major organs, and was contained to the abdominal wall.
The second picture shows where the tumor was (the inside circle with the lines in it), and then the portion of my abdomen that he removed (the larger circle). At the top of the outer circle, you see my ribs, where microscopic fibers of the tumor remain. There are also microscopic fibers of the tumor remaining at the bottom of the outer circle. |
 |
Perhaps the biggest thing I have done since coming home from the hospital...I BOUGHT A CAR ONLINE, from the comfort of my trusty recovery recliner :)
|
Thank you so much for all of the care and concern. I'm so grateful for our tribe. Bless you for making it through yet another lengthy blog post. Hopefully the pictures helped :)
