I had Mohs surgery three days ago.

I know how scary this experience can be and I wanted to share my story to help others.

Please read in reverse order as I can't figure out how to post the oldest first.

If you have any questions or comments, you can reach me at coelacanth17@gmail.com.

I'd love to hear from you.

Wishing you the best.

Friday, May 14, 2010

PART 8: The First Check Up

We went back yesterday, two days after the surgery, for them to check on the wounds. I took a regular Tylenol right before going in, to help dull any sensations. The nurse removed my dressings and then carefully cut the stitches from the gauze. I asked her to go slow, and she did. She said it all looked very good. The doctor came in and took a look. He is a kind man, very caring, and made me feel comfortable. He said it all looked good. I looked in the mirror and saw that the stitches were already being absorbed. The patch itself looked white, but he said that was normal and that in a few days it should be pink.

They dressed both wounds again, the nose and the ear, and said to continue to do what I was doing. I go back on Tuesday again. Meanwhile, I can't wet my hair, and I am to change my ear bandage once a day. I am to put saline solution and Vaseline on it. Nothing to do with the nose, just leave it and let it heal.

A word about pain: when I got back from the surgery itself the first day, I took a Tylenol with codeine, to get ahead of any possible pain. This strategy has worked. I took one at night for the first few nights. I really have not felt any pain, not what I was expecting to feel. The nose itches and burns a little every once in a while, and so does the ear, but it's not intolerable. It feels as though I had scraped it, nothing more. The worse part was having them working on your face, but with the exception of the discomfort from the Lidocaine shot (first one only and even that was dulled by the cream I had applied before), there really isn't any severe pain.

I have some pictures that my husband took. It has been wonderful to have him there every step of the way and he took care of me so sweetly. Please let me know if you have any questions I can answer for you, and I'd love to hear about your experience as well. Please leave me a comment, I would love to know if you read this and what you thought.

Thank you for reading about my experience, and I hope I was able to help someone. For me, although I did not realize how serious this condition was until after I read up about it, Mohs is the way to go.

All the best to you.

PART 7: At Home

I got home and was glad that my clothes were easily removable. I put on my pj's and got into bed. I was to sleep with two pillows, to have my head above my heart at all times. I remembered that I had a neck pillow for traveling, and I put that on. It has been so helpful in making me comfortable enough to sleep without having my head accidentally roll over onto the pillow. I cannot sleep on the right side of my face.

I have been drinking lots of water, and taking Vitamin C and Zinc. I have been eating protein. I read somewhere that this was recommended. I didn't feel like eating solid food, as it hurt to open my mouth and anything hard would be jarring. I've tried not to move my face too much, to remain calm and rest. I have my shake in the morning, which I sip through a straw, and for lunch and dinner I have soup and cottage cheese with fruit. It's all I feel like eating. The good thing is, right after the surgery I weighed a pound and a half less, and I've lost a half pound each day, which is a good thing because I had put on a couple of pounds during a recent vacation. I feel better getting back to my normal weight.

PART 6: The Repair

The surgeon came back with a smile and said they had gotten it all and would now close the wound. When they were ready, the nurse came in to get me. We went back into the first operating room. The doctor came in almost immediately and I expressed concern about having the needle in my ear, but he said I wouldn't feel it. At first I thought it was just something he said to all, but the truth is I really didn't. I don't know if I was so full of Lidocaine in the face that I was numb all over, or if it was the Valium. While waiting, I had asked to take another Valium and he approved. His nurse made a template of the wound and then they drew the template on the inside of my ear. The doctor had looked carefully at my face and both ears, and had decided that the best place to take the skin from was the flat inner part of the right ear, same side as the wound on the nose. He said the color and the skin matched perfectly.

They injected the Lidocaine in my nose again, and in my ear. All in all, I must have had about 60 shots of Lidocaine or so. The ear was numb and the doctor went in and scraped off the skin. I could not feel anything, other than the pressure of his hand holding my ear (or the nurse's hand), kind of pulling on the back part to give them room to work. More unsettling, perhaps, was that I could hear every last little scrape. Once he got the tissue, he immediately went to my nose and place it on the wound. He said it fit perfectly.

Then the sewing began. At this time, I felt more activity on my nose than before, as the string would pull when he stitched. My husband said he used a rounded hook type of needle, but I could tell he was comfortable and confident, and he was done pretty quickly. He used dissolving stitches all around the patch. He asked if I wanted to see, and I did. The stitches were black and went all around the wound. Later he stitched some gauze onto the wound to hold it tightly in place. This concept freaked me out a bit. They put lots of tape on it, and they taped up my ear.

I was told not to touch anything, not to get it wet, not to bend over, not to lift anything over ten pounds, to go home and rest. I was given a prescription for antibiotics and one for Tylenol with codeine. I was to return in two days (yesterday) to have them remove the stitched-on gauze and for them to check how the graft was going.

PART 5: The Surgery Continues

After a while, the nurse came back in and said the doctor wanted me back in the operating room. My heart sank. She said that I was apparently still positive. This time I was put in a different operating room. She pumped twenty more shots of Lidocaine in my nose, but I only felt a few, and those weren't too bad.

When the doctor came in, he said there was a diminishing amount of the cancer that went into a curved root-like shape, apparently towards the top instead of the rim of the nostril, which he said was a good thing. He went back in with the instruments, and this time I could tell he was digging deeper. It was unpleasant but not painful. He said that he would check to make sure we had gotten it all this time, but that I would not longer be satisfied with letting the wound heal naturally as now it was a deeper hole. He also said that stitches would pull my nostril up and cause a deformity, which was not acceptable. At this point, he said, the best option was a graft from my ear, which I did not relish as it meant more shots and another wound on my face. I was beginning to have the sensation that my face was disappearing, chunk by chunk, and it was unsettling. I was dismayed and looked over at my husband. Thank goodness he was there all the time.

They took us back into our private waiting room, the exam room. This part was difficult, waiting to see what the outcome would be, hoping they wouldn't have to go back in for more. If I had not done Mohs, I think a larger part of my nose would be gone. I was falling to despair a bit, but did not allow myself to sink. I read some more, drank water and ate my granola bar. By this time it was around noon, and I was worried that our dog had been locked up this long. So my husband went home to let him out for a while and then he came back. Nothing happened while he was gone. I just waited and read.

PART 4: Surgery

The biopsy at the dermatologist's office had been painful because of the needle they use to inject Lidocaine. I was anxious about going through that again. Some people who had the surgery had recommended bringing an ice pack to deaden the area. I remembered that a few years ago, I had cyst removed and I had requested a topical Lidocaine cream to be applied to the area ahead of time. I feel that sometimes surgeons fight this because it's an extra step and it takes time for the cream to work. But my dermatologist recommended that I call the surgeon and request a prescription, and for Valium as well. He wrote the prescriptions for me, and my husband had them filled, and we spoke to his office about my desire to come in early and have these medications take effect. This took some negotiating and some double checking to make sure that there would be no snags.

To have those medications was the best thing ever. We arrived an hour and a half before our scheduled appointment at 8:30 am, and the nurse applied the Lidocaine to my nose. It's a white cream and it is supposed to be covered by a Saran Wrap-type covering for it to take effect. I sat outside in the waiting room, which was almost empty, and since everyone who goes to this surgeon is there for the same thing, no one stared. A few minutes before my appointment, the nurse called me in and took me to their exam room. It had a dentist type chair, quite comfortable, and strong lights. I took the Valium under the nurse's supervision at that time. A few minutes later, we were taken to the operating room. It had a nice poster of trees, and a big window with trees outside. There was another dentist-type chair, but there was more equipment here, big lights that moved and trays with surgical tools.

The personnel make a huge difference. Everyone at this office was upbeat and caring and sensitive. They made sure at all times that I was okay. My husband was with me all the time and allowed to sit next to me and hold my hand. It was cold, and the nurse offered me a blanket, which I held on to the entire time I was there. One of the best things I did was to bring a comfortable cotton hoodie. It saved me from being uncomfortably cold. Part of that was the air conditioning, but another part, I'm sure, was my nerves.

I had dressed comfortably: long yoga pants, comfortable and soft with no tight waistband, a cotton t-shirt with a wide neck for easy removal, and slip ons. I brought my big purse with a snack, a granola bar (that was a great idea, as I later got hungry and headachy and if I hadn't eaten, it would have been worse), my iPhone with the Kindle application so I could read a little here and there (I like to read about people in dire straits, about to lose their lives, running from cannibals and such, to help put things in perspective), and a crossword puzzle book from the New York Times. I also had a book with me but did not open it, as the Kindle was enough. Later on, I got really thirsty, and my husband went and bought me a bottle of water.

The Lidocaine had taken effect and so had the Valium. The doctor came in and asked if I had any questions. I think I did, but don't remember what I asked him. He was kind enough to ask whether I wanted him to tell me what he was doing or not. I did, and he spoke the whole time. He also was encouraging, as it's invasive and not comfortable to have someone working on your face. He and his staff were very sensitive to that, and that helped immensely.

They cleaned the area and placed a drape around my face. I was told to close my eyes to protect them in case they dropped anything. The doctor drew a circle around the area with a blue felt pen and said that this was the area of incision. He gave me a mirror so I could see where he had drawn. Then he injected the Lidocaine and I barely felt it. They injected several times, with decreasing sensation, about twenty times around the area. This part, which many people say is the most painful, was not that bad because of the previous application of the numbing cream. Smart move!

The excision itself did not take long. They asked if I wanted to see, and I did. It was not bleeding a lot, a round red area. Then the nurse dressed my wound and they both said they hoped that was it. Now came the waiting to see if they had gotten it all.

I had previously asked to wait in the exam room if available, instead of the reception area. Something about sitting right next to people and doors opening made me nervous, with such a fresh incision. So my husband and I sat in the exam room and waited for about forty minutes while the doctor analyzed the tissue. I could only hope that they had gotten it all, because at that point, with the wound dressed, there would be no further procedures and the next step would be to allow it to heal naturally, just like the biopsy.

They had taken a lot of pictures, before, during and after, which I had given consent for. The doctor not only has a stellar resume and is one of the few in the area with the experience of ten thousand cases, but he also teaches. Anything to further medical science, especially as simple as letting them take pictures, was okay with me.

PART 3: The Wait

During the wait, I decided to try to remain as calm as possible. I thought of the other times that I had gotten worked up about something, only to realize that I had expended energy and fear for nothing, and was worn out about nothing. I remained positive. I laughed a lot. I also thought about my diet. I ate vegetables and protein, cut down on sugar and baked goods, took vitamins and exercised. Had no alcohol, no aspirin or Excedrin.

I like to make a protein shake in the morning, with high quality chocolate protein powder, a scoop of Isagenix shake, Ionix Supreme and Cleanse for Life (also from Isagenix), flax seeds, a banana, Greek yogurt, fiber, and cinnamon for blood sugar. I take Vitamin D and Resveratrol. I take a multi-vitamin every other day. This makes me feel good, full of energy. For lunch I would have a vegetable soup. I like to roast vegetables (cauliflower, eggplant, sweet potato, for example) and make my own soups. For dinner, perhaps some low fat cottage cheese with fruit.

The wait is never fun, and as the day approached, I felt anxiety creeping in. I pampered myself, using oils and perfumes. I smelled lavender oil whenever I could, and that seemed to help. I tried to go to sleep earlier than usual. I kept busy, reading and going out with friends. The support my friends gave me was wonderful. We went out to dinner and had a good time.

The night before the surgery, I took a long shower. I washed my hair and did not put any products in it. I scrubbed my face and left it clean, no products.

PART 2: The Next Phase

My husband immediately made an appointment with the Mohs surgeon and we went in for a consultation. He took a look at the area and checked my neck for enlarged glands, and my scalp. He was straight forward. There is no way to know how extensive the surgery will be, but Mohs is the way to conserve the most healthy skin.

We made an appointment for the surgery, and it was a month and a half away. Too much time to fret. I became obsessive about reading the internet, looking for anything that could help me, wanting to know what to expect. The surgeon was going to be out of town until a few days before my appointment, but I did ask them to give me the earliest cancellation if they got any. They didn't, but it's a good idea to try.

I googled my surgeon and found mixed comments. There was a dissatisfied patient who claimed that the hole the doctor had left was too big. This has, in my opinion, nothing to do with Mohs and everything to do with the cancer itself. If the cancer has roots beneath the skin, it will require further excision to get it all out. The good news is that Mohs only takes the damaged skin, leaving as much of the healthy skin as possible. And there is no guessing. They look at the tissue and continue to excise until they have all the cancer out. That's why it's the safest way to go, as other techniques are only calculation. I would much rather have someone looking at the tissue and saying: it's all out, no more cancer cells, than guessing about this. You go in with cancer, you come out cancer-free.

I called my dermatologist with a list of questions I had written down from all the reading I had done. She was kind enough to share information with me. She said that she had missed a bottom layer during the biopsy, and that perhaps I only needed one pass. She gave me the dimensions of the area. She spoke about her experience sending patients to this doctor. All in all, she was very reassuring.