So the past several days have been stressful to say the least. After all the good news lately, my last piece of recent testing was my routine annual MRI which was last Friday. Charlotte Radiology called at 5pm that evening and told me they found a 3mm “osseous lytic bone lesion”. It could be benign or cancerous. If it’s cancer, that means it spread from the breast and is breast cancer in the bone, and automatic stage 4 metastasis which means terminal or incurable. That doesn’t mean immediate or any time frame but that’s just what it means. They can treat it but not cure it. It’s in the manubrium portion (upper part) of the sternum (breast bone).
So after a needed break I went Saturday to my best friend Kelly’s house in Raleigh. I felt much better about things after spending the day and night with her. We went to Harmony Farms and got me some cancer and lymphedema supplements, a salt rock, and other goodies. I had a better feeling and attitude about things but was calling the on-call doctors all weekend long. The nurses were calling back but with no answers, just a lot of “I understand why you are so worried but you have to wait until Monday). I was infuriated. One, because they wouldn’t allow the doctors to call me back since it was the weekend and two because why would Charlotte Radiology call me that late in the day to tell me news like that when I couldn’t ask any questions right then. I even tried calling them back and it went to after hours. They do the scans in the morning and read them at 1pm. I called at 4pm and they hadn’t read my scan, so they say. Then they call at 5pm with the results. Thanks. Don’t get me wrong, I wouldn’t want to wait until Monday to get them, but wanted them earlier on Friday so I could make calls and ask questions.
So on another topic for a second, about a month ago, I fell twice. Once playing basketball with Aidan in the house while wearing socks. And again I tripped going down the garage steps and landed my tailbone right on the hard wood step. My primary care physician ordered an x-ray of my tail bone and lower back which came back fine. Then I went to the beach, got lymphedema and ended up in the ER and at the oncologist when I returned to Charlotte. Lymphedema is lymph fluid swelling which I got from a sunburn and can happen to people who have lymph nodes removed because there is no way to flush out the fluid.
My original oncologist, who I loved and trusted 100% had left the office, my second oncologist, the one who ordered the routine MRI 7 months ago in advance, was also not with the practice anymore, so they set me up with a third oncologist. I’ll call her Dr. M. She wasn’t there so I saw another oncologist who was filling in for another oncologist who is on maternity leave. I really liked her but she’s not staying with the practice so I still had to see Dr. M. After the front desk accidentally cancelled an apt I had scheduled with her, I had to wait longer to see her and kept seeing the fill-in oncologist, Dr. F. So I basically have like 5 oncologists now and they aren’t doing well at coordinating my needs.
Dr. F ordered a bone scan for my falls and that came back clear. She also ordered a ton of blood work including tumor markers, CBC (complete blood count), calcium (which could be indicative of bone mets) and other labs. My calcium and LDH (Lactate dehydrogenase, which is some sort of enzyme found in living cells) came back high. I asked them to retest it. They did and it came back fine. I went to my primary care, because I also have now plantar fasciitis (heel pain caused from a ligament that connects your heel bone to your toes). I asked him to retest my calcium and LDH and it came back normal again. So 2 out of 3 I was happy with and reassured.
So all that was good news. But then Friday came, and the MRI results. Since then, I’ve had a CT scan, which also came back clear. All this waiting though and doctors not calling me back timely, I was getting so pissed. And I never heard in person from who is “supposed” to be my oncologist, Dr. M. So I decided to switch.
I looked up Dr. Limentani and found out he’s now overseeing a second opinion clinic in Charlotte and back from his research time spent in Asheville (where he moved when he originally left). He called me immediately after I called their office and left a message. He told me the spot was likely not cancer but gave me a new oncologist since I was so mad at mine. Again who I’ve never once met or talked to. Can you sense my rage?
So I met with the new oncologist today. She’s with Novant and getting scans switched between different hospital affiliations is like an act of congress. I didn’t walk away feeling as good as hearing from the various nurses calling me telling me my scans were coming back clear. She was concerned about the MRI even still. She said she wasn’t as affirmative that it wasn’t bone mets and wants to do a MRI guided needle aspiration biopsy. Another appointment, yay! She also wants to schedule a brain MRI so she has a complete picture and also repeat the MRI, bone scan and CT in 2-3 months. I see her again next week after CMC gets the images over to her. Oh and she also said she didn’t think I needed to be on Lupron, which I went on last week at my now “old” oncologist’s office.
Also had my lymphedema clinic apt today. That went well. Minimal swelling now but still swollen. The swelling was growing a half inch a day until finally my gynecologist of all people finally ordered a prescription for a compression sleeve. So I basically cured that on my own. The oncologist wouldn’t write the prescription but my gynecologist did in a matter of seconds. I was annoyed and mad yet again.
So now, we wait on a few things. One, my new oncologist (Dr. Kessler) who I met with today and liked very much, is going to ask Charlotte Radiology if the lesion is big enough at this point for a biopsy. That would be ideal. If not, we wait and repeat in 3 months to see if it’s grown and go from there, probably with the same round of testing.
I am exhausted, and like when I was first diagnosed, keeping everyone up to date who know what’s going on is exhausting and stressful so I wrote a blog post and will keep updates here instead of 20 individual back and forth texts.
I have a feeling everything will be okay. My best friend and I said cancer wasn’t “my path” anymore and my family and closest friends who I’ve told are praying, hoping and even resting assured for the best. We need to focus on the clear scans and low likelihood that it could something this far out (8 years) and my response to original chemo (however I learned today I didn’t have a complete response and there was a little bit left after chemo), but mets can happen at any time so I won’t be at ease until we have all the answers. Also found out recently that the reason I have annual MRIs unlike some other survivors is because my breast cancer was so close to the muscle. Didn’t know that either until recently.
Future posts should be way shorter but everyone has questions so I am trying to answer them here instead. I can’t keep up with my texts.
Oh wait, some good news…….I am signing up for a breast cancer lunch with Cam Newton and Greg Olsen from the Panthers. Pray I get in and don’t have an apt conflict! Greg is my favorite hottie football player.