Back to cancerville
I’ve been avoiding blogging since the breast cancer reconstruction was winding down and it was all over except for the crying. It has been an emotional couple of months while the reality of what I’ve gone through over the last year started to creep in and I was forced to face some of the things I was avoiding like my mortality and the sadness and grief over what I’ve lost and the sense that cancer has changed me in some way and I needed to rediscover myself. But, I was starting to deal with it all and put the pieces back together.
And then cancer hits again.
I had my nipple reconstruction surgery on April 20th. Dr Treece used a skin graft taken from my c-section scar to transfer to the faux boobs to make faux nipples. They are looking okay now but after the surgery I nicknamed them Frankennipples. They were scary. I was calling the surgeons office because I was concerned when they were purple and oozing pus. He said it was fine and that’s what skin grafts do. But the nurse had me text her a picture so they could decide if they needed to treat it. I was at work so I went into the teacher’s lounge bathroom and started snapping pictures of my nipple. I texted them to the nurse. She agreed that they were infected and gave me an antibiotic.
This was probably one of the first signs that something was wrong with my immune system. I was also tired a lot. Very tired and had to fight to stay awake during the day and I’d come home and just lay in bed. I figured it was because I went right back to work after my surgery and even though Dr Treece was proud of the mini-tummy tuck he included free with purchase of nipples it was painful for weeks. I was having a difficult time recovering from this last surgery.
Then I found a lump in my neck. My heart sank and it was a very busy time at work but I made an appointment with my PCP. She declared it a swollen salivary gland but sent me for an ultrasound just in case because of my history. The radiologist said it was a reactive lymph node but wasn’t of concern but a follow up with my breast surgeon was warranted. I got in with Dr. Lilly the next day. He agreed that it was a normal reactive lymph node and scheduled a follow up for 6 weeks out. He did mention that I had a few swollen nodes in my underarm. He told me that this is not how metastatic breast cancer looks and that it could be any kind of infection or a reaction to surgery causing the swelling. He was not concerned. Then, I saw Dr Treece the next day for a surgery follow up and mentioned the nodes. He did an exam also and said that it is common to have swollen nodes like that after going through all the surgeries I’ve been through. He told me not to worry.
After that I felt a second node in my neck and the first node was bigger. I went back to the PCP. I also confessed some of the other symptoms I’ve been having like occasionally blacking out at work and my anemia and fatigue. She ordered a complete blood count test and another ultrasound. Next day she called me and said my white blood cell (WBC) count was very high and she was concerned that there was more cancer somewhere in my body. She changed the ultrasound order to a CT scan of my neck and abdomen. I had high liver enzymes so she was concerned for breast mets to the liver.
We went for the CT scan the next day. That involved drinking 20 ounces of apple flavored contrast and sitting in a machine. We had results sent to all of my doctors. Results of that showed diffuse enlarged lymph nodes throughout my body but no tumors. My liver and spleen appeared enlarged. They did not get pictures of my chest so I went to Riverside for another CT scan on Friday afternoon. Dr. Lilly called me Saturday morning to let me know that there are multiple enlarged lymph nodes in chest but the radiologist and him have ruled out metastatic breast cancer. He then told me that my labs and images are indicative of some kind of leukemia and that I need to go see a medical oncologist.
I begged an early appointment with an oncologist at a big cancer center. They drew my blood and we waited about 20 minutes. The Dr came in and already had the results of those blood tests. Within 30 seconds he tells me that he knows what’s wrong and that I have Chronic Lymphatic Leukemia. It wasn’t a shock since Dr Lilly already told us. But I was confused because chronic disease comes on slowly and builds over time. It is often diagnosed before treatment is even necessary. My blood test results were normal on April 15 th and now they are completely crazy. I told him I thought it was acute. He said, “believe me, you don’t want acute” and said that based on how my cells looked in the microscope he really thinks its chronic. He sent us home with prescriptions for antibiotics for one of my infected nodes, steroids to try to get my spleen to stop freaking out and get my blood counts more normal and an appointment for a bone marrow biopsy to further diagnose and plan treatment.
At home I was still barely able to get out of bed because of fatigue and dizziness and fever but I was hopeful that the meds would start working soon and I would feel better. Two days later the oncologist called me around lunch time and said that he was wrong. That it looks like my leukemia is acute and that I need to go right away to OSU to the James to start treatment. He said that their center was too small and I needed serious treatment.
We went to the ER at OSU.
You know how you usually have to wait forever at the ER to see a doctor? Yeah, not this time. I was in triage for a half hour or so while they tried to get blood from my worn out veins and a crazy busy nurse tried to start an IV. She gave up after 4 very painful attempts and sent me back to see a doctor. The ER doc came in right away and sat down to chat for awhile. I know this is a good thing but the reality of the seriousness hits when docs pay you extra special attention. Since I was having fainting spells he was concerned about an embolism and sent me for an x-ray. He also called the oncologist that sent me to ER and went to talk to his boss. Then two more doctors came in to chat. They said that I was being admitted to the hospital and someone from the James would come down to see me.
The leukemia specialists from the James came to see me and sat down. They explained that we are likely looking at acute leukemia and I would need to be admitted for testing and to begin treatment. They said the first 48 hours are the hardest because of the unknowns and testing they need to do. Jeffrey asked for a ballpark of how many days we would be here because we need to figure out logistical things like work and childcare. We were thinking 48 hours for testing and diagnosis and then a couple days to start treatment. We were told that for my type of cancer treatment is inpatient and a short stay would be 6 weeks.
So, here I am 10th floor James. I have a fabulous view and everyone is so nice. I will continue to document my stay on my next blog post.