One Week Post Op

It's Christmas Eve and Dr. Newman wants to look at the incision and determine if the drain should come out. It has been draining more than it was the last time. I am doubtful it will come out today. It is such a pain to have this thing. More annoying this time is the drain is right at my spine. My incision is close to a foot long and there are a lot of staples. I can feel the drain moving within my back.

As luck would have it, Dr. Newman decided to take out the drain. What a great Christmas gift! I was so relieved and felt the worst was behind us. I was really sore and this was the first trip I made even downstairs, let alone leave the house.

Christmas was low key. We stayed home and enjoyed each other and our family. Scott really stepped it up making everything normal for the kids. I tried to recover as quickly as I could. The kids would go back to school soon and I would be back to the normal hussle and bussle soon enough.

Surgery, Part II

Surgery is scheduled for today. Same players, thankfully. The same sweet little nurse, even the same surgical transport guy. It was a little weird. The only difference is that I didn't have months to get to the point that I wanted surgery. I had a week to prepare and I didn't want to have it! Period! I was more frightened becasue I knew what to expect. I knew it would hurt. I knew I would be laid up for weeks. I knew I would have a drain. I knew I would be stapled back together in gruesome fashion. And I knew they could come back!

Surgery was a few hours. Dr. Newman had reinforcements in the OR this time. He had another surgeon assist and a pathologist in the room with him. They removed 5 tumors, totalling 9.0 X 8.0 X 4.5 cm. "All final margins appear free of tumor." I was off to recovery, Dr. Newman filled Scott in on the surgery. An hour in recovery, I was back in my room.

Not wanting to repeat history, I was terrified to try and walk. I had never passed out before my first surgery and I knew I didn't want to ever again. I cried, I walked and I didn't pass out. I went home a few hours later. The kids were all there to greet me. Grandpa, Grandma and Uncle Scott were with them. We were all getting good at this surgery thing.

CT Results Are In

The results from my latest scan are in and there is no way to sugar coat it. Dr. Newman just comes out with it, they are back and we need to take them out again. We opt for a quick surgery. With Hannah's surgery in the Summer and mine in the Spring, the family deductible is paid in full and we will atleast save money. Hey! We are trying to find all the positive we can in this situation :-) Surgery is scheduled for 12/18/08. We know the drill.

CT Scan Number ???

I go to CDI for yet another CT. Same poor lady is there trying to convince me nothing unusual going on in my body. She is lousy at concealing bad news, by the way. I leave there in pain and pretty sure there is something growing in my body, again!!

Pain and Swelling In My Back

I visit my new primary care doctor (I learned from the first time, that doctor wasn't the right doctor for me) and describe the pain and my history. He ordered all of my reports and examines me. He doesn't feel anything but he would like for me to go see my surgeon. They agree to see me and Dr. Newman doesn't feel anything either. I know that I have been feeling pain over the last few months but I ignore it to some degree. Dr. Newman reluctantly orders another CT scan prefacing it with these types of tumors typically get confused with scar tissue. He is worried they will misread scar tissue for a new mass. After all, he doesn't feel any. Everyone agrees the area is swollen but they don't feel a mass.

Last week only a few staples were healed enough to be removed. The last of them were removed today. I ask Dr. Newman what caused this mass to grow and will it come back. He says, only God knows and maybe. He leaves off, swating my back, this is the funkiest place I have ever seen one of these! Lucky me!

Some Staples Are Removed

Only some of the staples are ready to be removed. A few split open after being removed and Dr. Newman decides we should wait on the rest. Everything is healing well. Come back next week.

First Post-Op Visit

We go to see Dr. Newman to check on the staples and the drain. The drain was such a drag! It sent me into tears a few times. It was the most annoying part of the whole process. It was uncomfortable and I had a reaction to the tape that went across the 8 inch scar with staples, the drain wound and wrapped around my stomach to my belly button. Thankfully, the week mark and very little drainage meant the blasted drain would be removed! It was a great day! Staples would stay, it wasn't healed enough to remove.

The most important news of the visit included the pathology results. We were resolved to hear the words cancer and assured we could get through it. The diagnosis, cellular fibromatosis. What the heck is that? Dr. Newman explained, it is a benign condition that behaves very much like cancer, an aggresive tumor. He would have bet the bank it was cancer but it wasn't. He offered his congratulations, see you in a week.

Surgery Day

Today surgery is scheduled to excise the mass on the iliac crest on the lower left flank. Strangely we have anticipated this moment for so long that we are relieved it is finally here. Dr. Newman has an incredible reputation and everyone at the hospital is fantastic. From the surgical nurse, who is also the nurse that held my hand as I waited to go into the OR several years earlier after having suffered a miscarriage. She, too comforted me with her stories of survival at the hands of Dr. Newman. I was confident I was in the very best hands, anxious to move past this very long chapter. Scott waited for word from the operating room. Dr. Newman successfully removed the tumor and sent it away to pathology. We were disappointed they didn't do this in the operating room but they didn't and they must have had their reasons.

I woke up in the recovery room to the question, "is your blood pressure usually this low?" How was I supposed to comprehend, nevermind answer a question like that after being under for a few hours!? I muttered something I'm sure they didn't understand. I quickly woke up and wanted to see Scott. An hour later I was in my room. I tried to rest but I just wanted to go home. I was told I needed to eat, drink, walk and pee. I was anxious to get this show on the road. I ate and drank just fine. Several hours later, I was ready to walk. As I sat up I was light-headed but it past. I swung my feet over the bed and again, I was light-headed but it passed. I stood up and I passed out! Luckily, I did everything as I was told and she was ready to catch me. She and Scott caught me before I could get hurt. I bought myself more time in bed, at the hospital.

It was late before we got home. The kids were anxious to see for themselves that I was okay. Scott's mom and my dad held the fort until we arrived. Justin wrote the sweetest note, leaving it on my pillow with a chocolate and water at my bedside. He was so worried and probably didn't know what to be worried about other than this wasn't normal!

Surgeon, Dr. Newman

We meet with Dr. Newman to discuss the mass and how to remove it. He, too is certain it is soft tissue sarcoma. He is also certain that we will take it out, do a course of radiation and I will be fine. He even stops himself because he doesn't want to go any further with any discussions until he knows for sure what we are dealing with. He is the first doctor to keep open speculation to a minimum. He could see that we were terrified and he didn't want to add to our stress until he was certain. We were aware of the theories but we would have to wait until they took it out and looked at it. Surgery was scheduled for 4/3/08.

Oncologist

I visit the oncologist for his opinion. He is tripped up by the lymphoma diagnosis and doesn't understand why they haven't begun a treatment plan. He places a call to the doctors involved thus far and moves to his opinion....soft tissue sarcoma. He is pretty sure that it is soft tissue sarcoma. Surgery to remove the tumor is the next course of action followed by radiation and/or chemotherapy. Based on the size the tumor is measuring, the news is not great. It is a size that would dictate, easily stage 4 cancer. We look to the surgeon for his opinion. All the while, the kids obviously can sense that something is wrong but until we know exactly what we are facing, Scott and I choose to keep them out of our discussions.

Still Waiting

A week came and went. I placed a call to the hospital to find out when they expected to know the results. They had sent the biopsies out for additional stainning. What ever that means?!?! It isn't until after a week and a half do we hear anything. The results are inconclusive! They know nothing more today than they did when we started with the pain management doctor. To this point no one has told me what they think this mass is other than I need to get going on treatment. The pain management doctor submits a referral for a consultation with an oncologist. So I make the appointment...

CT Guided Needle Biopsy

I get checked into the hospital for the CT guided needle biopsy. Scott and my dad are with me. They take me alone into the room. The CT scan of the mass allows them to know exactly where to place the needle. After they locate the tumor they numb the area and insert the barrel type needle that stays in during the procedure. The showed me the "gun" and let me hear what it sounds like before they start. It was startling, sounding like a staple gun so I was grateful they didn't surprise me with it while it was cutting me. The technician assisting the doctor is the same technician that did my scan the week before. He was a very kind gentleman who held my hand throughout the procedure. I will always be grateful for his kindness and compassion. He was about the same age as my dad and I felt that he was actually there with me. I was shaking with fear and then the pain came. Initially there was no pain but following the first slice it started to burn. They injected more lidocane but that burned, too. After several slices I refused any more injections because they were just as painful as the slices. They offered no relief. They sent they biopsies to pathology and we waited to hear the results.

Repeat CT Scan With and Without Contrast

I visit the hospital for a repeat CT scan with and without contrast. We learn that they are looking to see if the tumors have spread anywhere else in the body. Scott has spoken with the pain management doctor several times for answers. He conveys to him that he needs to get me somewhere quickly for care, i.e. The City of Hope or UCLA. It is urgent and these facilities were the best that could be offered to someone like me. Scott's mom has a friend over at The City of Hope and together we get registered to see a doctor.

Needle Biopsy is Ordered

A CT guided needle biopsy is ordered based upon the CT results. The hospital where this is to be done first wants to repeat the CT scan. For reasons they only know, I need to repeat everything over again. First I would have to pick up copies and reports of my scans. Like any terrified patient who seeks information, I read the reports. I probably shouldn't have but I didn't know what everyone was so excited about. Why did I need to repeat everything and why did they want to stick a needle into my back? Why, I thought don't they just take this thing out and everything would go back to normal. Lymphoma of the intra-abdominal nodes is why! That was the diagnosis, lymphoma!!

Another CT Scan....WITH Contrast

It turns out they DO scan with contrast on this part of the body. I picked up the gallons of chalky drink and return to be scanned. It was quick and easy and still easy to read this poor woman trying to convince me everything was okay. We both knew it wasn't!

CT Scan

This ball did get rolling and I was set to take a CT scan of my lower back, with and without contrast. When I arrived to have the scan they inform me that they don't do scans with contrast on that area of the body. The CT was uneventlful and I went home to wait the results. I was certain their was a mass/tumor inside this swelling on my back and the technician who did my scan didn't hide it as well as she probably thought she did. The minute she came back into the room, it was written all over her face that I had something to worry about.

Pain Management

I visited the pain management doctor and immediatly he voiced his fears, kidney cancer! I was alone and terrified! I thought, for sure this doctor knows what he is talking about or he wouldn't have uttered those words. Scott jumped in his car and came and got me in Pasadena. This was when the ball truly started rolling for me.

Pain Management Doctor Referral

My primary sends me to a pain management specialist. I sat on the referral for a while because all of my understanding was that this type of doctor would manage the pain but not really fix the cause of the pain. The bump continued to grow and I was learning how to avoid situations that would cause the most pain. All of which included avoiding contact with Scott and the kids. I just couldn't see how that was going to work for very long. A friend of mine convinced me to give it a try because it could help me to get where I needed to be, with the right doctor.