The Lymphadenectomy Results Are In!

Yesterday, my hubby, our son, and I went to the Oncologist yesterday. The good news is that the two axillary nodes (underarm) tested cancer free. However, the epitrochlear​ node (elbow) tested positive for Merkel Cell Carcinoma. I wasn’t surprised, the PETScan and ultrasound taken before  the surgery showed possible involvement in that region.

The Oncologist mentioned two possible treatments, radiation and/or another surgery to remove the rest of the epitrochlear lymph nodes. The Oncologist stated that he, the Oncology surgeon, and a Radiation oncologist will meet up and discuss my best option. In the meantime, he asked me to meet with the Radiation oncologist. My appointment with the Oncology surgeon is in a couple days. I hope that his assistant can get me in to see the Radiation oncologist on the same day.

My current Oncologist specializes in Skin Cancer, but only treats between 6-12 people with Merkel Cell Carcinoma (MCC). This is why I’m going for a second opinion in New Brunswick with an Oncologist that specializes in MCC. While I’m waiting for my second opinion appointment, I will continue meeting with my current team at MD Anderson at Cooper.

To lift my spirits after appointments like this, I try to plan fun stops, before heading home. After this appointment we went to IKEA, my favorite store away from home!

wp-1496500448020.

Healing (Pics and Suggestions)

*”FYI, this post contains graphic pictures of my surgery sites.

As a normal person would imagine, the surgeries left me extremely sore and exhausted. However, I’ve never considered myself normal, so I thought that I’d bounce back as quickly as I had so many times before. 

Even though my plastic surgeon warned me that the skin graft donor site would be extremely pain, I underestimated the pain. 

Right After Surgery
Right After Surgery

Immediately after the surgery, it felt like my skin was seared off. Walking was difficult. Applying any type of pressure to that area felt like abuse.

Medical supplies used to treat this area include:Skin Graft Wound SuppliesSkin Graft Wound Supplies

Day 1 Skin Graft Donor Site
Day 1 Skin Graft Donor Site

*DO NOT LET THE GAUZE GET STUCK ON THE YELLOW PAD. Removing the gauze felt like my meat was being snatched out of my thigh… complete torture!

Day 4 Skin Graft
Day 4 Skin Graft      
                                          Wide excision biopsy w/skin graft pic 4 days after surgery during my 1st post op appointment with Plastic Surgeon. This is when it hit me that I have Cancer.

6 Day of Skin Graft
6 Day of Skin Graft

Medical supplies used to treat this area include:

Suggestions for this surgery: 

Loose shorts and pants, flowy skirts and dresses for comfort. As previously stated,  you don’t want anything tight against that graft site. I wore tights to the surgery because they were comfortable…BIG MISTAKE!! The medical supplies rolled off the skin graft site and my leggings got stuck on the wound. OUCH!!😭

As for the excision site, I suggest wearing short sleeve shirts. After 10 days this wound doesn’t bother me as much. It is still sore if touched, but left alone it is fine.
Negative: I’m a stomach sleeper. Sleeping was very difficult. If you don’t have a bed rest pillow, GET ONE!! You’re more than likely going to sleep sitting up or at least propped up on pillows. This pillow will be very useful.

Positive: After a week of washing up, you can take a shower!🚿😀😃 OMG! That first shower felt like a vacation! 🏖😎

Still awaiting lymph node biopsy results…

Biopsies, Grafting, and Reality

Truth be told, leading up to the surgery I didn’t think it was a big deal. To be honest, I still hadn’t accepted the fact that I had cancer. In my head, it was just another surgery that I needed to have, for another ailment that I had. However,  the night before the surgery,  reality started to sink in. I started freaking out. What if this ailment was worse than scans showed and I ended up needing my arm amputated? What if I didn’t wake up from the anesthesia? Needless to say,  trying to relax and fall asleep were a nightmare. Eventually, exhaustion kicked in and I got a couple of hours of sleep.

Early that morning, my other mom, Louella, my Aunt Bev, hubby and I drove to Cooper Hospital in Camden, New Jersey. Surgery check-in time was at 6 a.m. Surgery was scheduled for 7:30 a.m. We checked in at 5:50. After checking in, we were escorted upstairs to the waiting area. A nurse then came to escort me to my shared room, where I changed into a gown, cap, and footies.
Around 7am my surgeon came in to go over the impending procedures. However, he only mentioned the wide excision and skin graft. I told him that the general oncologist, in which he referred, recommended that the surgeon remove a couple of lymph nodes as well. My surgeon told me that he hadn’t seen any notes from the oncologist, but he will go check my chart. Already anxious, this issue makes me even more anxious​. By the time my surgeon returns to my room, I’m pissed! However, my anger quickly dissolves when he tells me that he located the recommendation and apologizes for the oversight. He tells me that in order to identify the sentinel lymph node, which is a must for the procedure, I would need to be taken to radiology for a lymphoscintigraphy.

The problem was Radiology didn’t open to til 8. My surgeon called the department head to get me in ASAP. Once in Radiology, a nurse injected me with radioactive dye. I sat for approximately 30 minutes, then was scanned. When I returned to my room, I was notified that both my oncology surgeon and plastic surgeon had started other procedures they had scheduled after mine and my surgery time was pushed back to 12:45. 😕 Being the time fanatic I am, I hate wasting people’s time. Immediately I felt awful for my aunt and my other mother. They told me to stop apologizing, that is was fine. But I still felt bad.  My hubby is my rock and he was already planning on caring for me all day so there was no need in worrying about his time being wasted.

Around 12:15 the surgical nurses, physician assistants, and finally surgeons started coming in checking and rechecking my charts, asking me to confirm then reconfirming my information, and mark sites. Before long I was being wheeled away from my family and into surgery. The surgery took 4.5 hours. I awoke around 6pm. I was kept in the recovery a little longer than normal due to my oxygen levels being unstable. However,  once they leveled off, I was reunited with my family. While hubby went to get the car, my aunt and other mom helped me get dressed. Then, they HAD to help me to the bathroom, AND inside the bathroom. 🙁 That’s when the reality of how serious this surgery was set in.
Positives:

1) Having my family there.

~My aunt is like the mother on the movie, “Terms of Endearment.” Every patient needs someone like her in their corner.

~My other mom is very inquisitive. She questioned everything the nurses and doctors said. She wanted to why certain procedures were necessary and how those procedures would affect me overall.

~Hubby was there for me mentally. He knows me better than anyone. He knew we I needed a hug, a kiss, a smile. He’s awesome!

2) Finding out that there is such a device called a vein finder! I’ve always had the worse luck with IV placement. I have small rolling veins. I’ve made it a point to tell everyone from phlebotomists to nurses this and none of them asked me if I would like them to use a vein finder. Instead they would use me as a pin cushion, blowing veins time after time. Not anymore! Now, I will always request a vein finder for IV placement.

3) All of the nursing staff were awesome! They were knowledgeable, smiling, energetic, and helpful. They tended to me and my family as if we were rock stars!

Negatives:

1) Procedure mix up. Had I not spoke up, I would have needed a second procedure for node biopsies.

2) No literature was given on my procedures. Yes the discharge paperwork was given, but that’s it. No pamphlets on treating surgery sites, what to expect from the sites during the healing process, were given to me or my family. Yes, the surgeons spoke with my family about these issues, but let’s be real. When a loved one is sick, has a 4.5 hours long surgery, is in a recovery room, but you’ve yet to see them, would you be able to remember everything said to you?

Merkel Cell Carcinoma (MCC) Count Down to Wide Excision, Skin Graft, and Sentinel Node Biopsy 😕

With it being Mother’s Day and with our 25th Wedding Anniversary approaching, my emotions are on overload. One hour I’m crying, the next I’m laughing. While I’d love to live in the moment, I can’t help but wonder if this is my last Mother’s Day and our last wedding anniversary. Yes, I know GOD is in control. I also know that GOD and GOD alone knows my date of expiration. Amen? AMEN.  Trying to stay positive and pain-free has become my full-time job.

I’m planner by nature, so I’m making plans for both outcomes. If the Cancer has spread to my lymph nodes I will need to do either or a combination of clinical trials/chemo/radiation, so I’m researching personal things recommended during these treatments. I hate shopping! However, I love vacations!! If the Cancer has not spread to my lymph nodes, hubby and I will be taking a much-needed vacation. A little R&R is soooo overdue. I love him so much. He’s truly been my rock… my help mate.

On a more positive note, I’ve been eyeing Alex and Ani bracelets for years now, but never really committed to purchasing any. With the urging of a friend/co-worker, I will use them to hide my skin graft, until I’m comfortable with the scar. Thanks for the idea Sarah Lieto! Thanks for starting my collection hubby. 😙


My daughter and I. I forgot to get a pic of my son and I.


My hubby and I.

My Cancer (Merkel Cell Carcinoma) Update #1

A PET/CT scan assists doctors in staging cancers by revealing the source of the cancer and locating other cancerous areas of the body. My PET/CT scan was completed  on 4/20/17.

Before the scan, patients receives an injection of radioactive glucose to light up metabolic cancer cells.  My known cancer is on my right forearm so it only made sense to do the injection on my left arm. The problem is, almost all of my veins in my left arm are blown. After 2 failed attempts,  the nurse injected my right arm. My scan showed a small hypermetabolic focus in the mid right forearm  (the known location). An additional subcutaneous soft tissue nodule in the distal upper right arm, possibly the epitrochlear lymph node, was noted. It also revealed, a morphologically normal nonenlarged right axillary lymph node that demonstrated mild metabolic activity, which could be due to the radiotracer infiltration or mestastasis. On a positive note no cancer was seen on my organs.

Since the lymph node findings were inconclusive due to the radioactive glucose being injected in my right arm, my oncology surgeon ordered an ultrasound  of my epitrochlear and axillary lymph nodes. 

I had the ultrasound on  4/27/17. 

Surgery is scheduled…

May is Skin Cancer Awareness Month.       Do You Have Skin Cancer? I Do!

On 3/20/17, I had my consultation with a Oncology surgeon (Dr. S). Had I not had the experience of being seen in a Cancer Center for my iron infusions or escorting my mother to a couple of her chemotherapy appointments (may she continue to rest in peace),  I probably would have been overwhelmed by the various faces of cancer. I wasn’t.

Everyone at the Cancer Center was pleasant and accommodating. When the surgeon walked in,  I felt a sense of calmness come over me. He asked me all of the same questions. How long have I had it? Does it hurt? Have I noticed anymore bumps? Any color changes? He checked me for additional bumps. He also felt my lymph nodes for swelling. He then performed two fine needle aspirations to obtain cells for testing.  A week later I was notified that no cells were found in the samples and I needed to have an incisional biopsy to remove a portion of the bump for examination. The incisional biopsy was performed on 4/5/17. My follow-up appointment was scheduled for 4/13/17.

A day before my follow-up  appointment I received an email reminding my of my upcoming appointment. A couple of hours later, I received another email informing me that another appointment had been made for me on 4/19/17 with a different doctor (Dr. M). I called Dr. M’s office and questioned the receptionist about the appointment. I was told that Dr. S’ assistant made the appointment and that I’d have to call Dr. S for an explanation. Before calling Dr. S, I googled Dr. M and learned that he is an Oncologist, specializing in gastrointestinal oncology, clinical trials, novel therapeutics, cancer and genetics. Needless to say, I assumed that I have cancer. I then called Dr. S’ office and spoke with his assistant. I asked why she made me an appointment with Dr. M. She told me that Dr. S requested the appointment be made to hold the spot in case I needed it. 😒😑 Really?!? Yeah right! But, okay. I played along. I was seeing Dr. S the next day anyway.

Mentally prepared to be told I had cancer, hubby and I arrived at the Cancer Center the following day.  However, we weren’t prepared for the type of cancer in which I was diagnosed.

Dr. S told us that I have a rare aggressive skin/soft tissue cancer named “Merkel Cell Carcinoma.” According to the American Cancer Society, approximately 1,500 cases of MCC are diagnosed in the United States per year. Whereas, approximately 87,110 people will develop Melanoma Skin Cancer, the most common of all skin cancers, this year.  MCC is usually diagnosed in white males, over the age of 50, who are exposed to a lot of UV light. The only  criteria I seem to meet is a weakened immune system due to my Autoimmune diseases. Like any other cancer, there’s no cure and it’s generally treated by excisional wide biopsies, chemotherapy, immunotherapy, and radiation. One’s treatment depends on the stage of the MCC.  Since mine is on my forearm,  I need to have a skin graft performed by a plastic surgeon at the same time of the wide excisional biopsy.  He stated that I would first need to have a PET scan to see if there are any other possible tumors.