By: Leah Taylor
What you are about to read is my experience from September 25, 2018. It could be quite difficult to read for anyone dealing with breast cancer. It is raw and real.
6:15 a.m. I wake up. The bed leaves me stiff but I am grateful for my son and his family and their extra bed. So, I slept reasonably well considering I wasn’t in my own home. I stopped at my son’s after being released from the hospital last night. After a four day stay, it was too late to make it home without it getting dark on the drive home. I can’t drive safely after dark due to treatment related cataracts.
10:30 a.m. I leave my poor stressed rescue dog as I make my way back to the hospital for outpatient hyperbaric treatment. I am ready to be home, but it must wait until after hyperbaric treatment and an appointment with Dr. Savage. Dr. Savage is my wound care physician.
2:00 p.m. I am finished with the hyperbaric treatment and waiting to see Dr. Savage. After last Thursday’s drama, I am a bit jittery. It isn’t because of her as she’s a great doctor. I really appreciate her being involved with my care. I am stressed due to the new information from the hospital stay. As I am waiting, the nurse comes in and removes my bandages and gets me ready for any necessary debridement. Thank you lidocaine!
Note: I was admitted to Harris Methodist after my hyperbaric treatment last Thursday. A home health nurse came to change my bandages around 7:30 a.m. and she noticed a nasty rash across my chest. She told me to report it immediately when I arrive for hyperbaric treatment. I comply. This starts a cascade of actions. Dr. Savage says I need antibiotics and sends me to the Harris E.R. By 10:00 p.m., I am admitted and on the second floor of the Jones Tower. I see a myriad of physicians during my four day stay. I receive a number of IV antibiotics at the order of and infectious disease specialist. Dr. Savage had me set to see Dr. Tiu on the 26th of this month. Due to this new situation, I meet her early. I am impressed with this amazing doctor as well. She comes highly recommended.
My oncologist, Dr. Parra, also comes to see me on Friday. I am surprised to see him walking in my hospital room and tell him so. He says; “Of course I am here.” He tells me that he is going out of town for a conference and introduces me to his colleague that will be seeing me while in the hospital. Apparently, he is called regularly during my stay and kept up to date on all the details. I am comforted by this continuity of care. He has told me in the past that he has privileges in multiple hospitals, but it didn’t register that this situation was serious enough to warrant his involvement. I can be so obtuse sometimes. At least I can laugh at myself.
Over my stay I undergo two CT scans in place of the outpatient one that was to be done in the following week. The scans do not show any abscesses, thankfully. But, they do indicate significant soft tissue progression of disease. This damn cancer is running amok. This isn’t a total surprise. Dr. Parra and I have been discussing the next possible steps in treatment. It also isn’t a surprise when
Dr. Tiu tells me the specimen Dr. Savage removed from my wound last week was tumor. My cancer has shifted into high gear.
I am finally release around 6:00 p.m. on Monday, September 24th, 2018. I am very pointed in telling my nursing team how impressed I am with the care I receive. I make a mental note to be sure to let the admin at Harris know how much I appreciate each member of that team that helped me. They are all very good at their jobs and very compassionate. This makes my stay tolerable in a barely tolerable situation.
Back to Tuesday, September 25, 2018.
2:15 p.m. Dr. Savage walks in and apologizes immediately. She knew I was very reluctant to be admitted and concerned about my dog. Dr. Savage and the RT, Christy, tell me they had discussed picking up my dog. I am humbled and awed by their concern. (When you end up with a psychologically difficult rescue chihuahua, you have to be his protector. I am not a dog person but this little guy has been by my side for a year and a half. He trusts me and has been through the wringer. Thankfully, my son picks him up from my home on Friday evening. My son and daughter-in-law report that his behavior has been very good. This makes me feel better. I have bonded with this little guy and want him to be happy.)
I tell Dr. Savage I am not upset with her for being admitted. (The E.R. physician was very pointed. He said; “Put yourself in my shoes. You have an obviously progressing infection. You are a cancer patient with a compromised immune system. Not admitting you would be irresponsible.” I agree with him.)
The next few minutes in this appointment are difficult. Dr. Savage tells me it is time to pend hyperbaric treatment until the cancer is under control. She tells me the margins aren’t clear on the specimen she removed last week. But, that wasn’t the intention. Her words are gentle but it is still a punch in the gut. I will remain with wound care and see them on a weekly basis. But, all the time invested over the last few months has been for naught. The capper of my appointment is that Dr. Savage is leaving the clinic and going to open another clinic and train other physicians. I will miss the hyperbaric team. I will also miss Dr. Savage. She is an amazing physician.
6:00 p.m. Unbelievable, I can’t get my door to unlock. The recent large amount of rain has caused my door to swell. I am at an emotional breaking point. Today has been excruciatingly difficult day. I am told my cancer is moving with great speed. I may not have good options left. It feels like the universe is singling me out to punish me and mock me at my lowest point. After getting my wits about me, I call a neighbor for assistance. Thankfully, she is able to help me get in my house. I find my blood pressure drop and try to laugh off the stress of this ridiculous situation.
9:30 p.m. After updating a couple of people via text and talking to a close friend, I am finally relaxing and close to sleep. I know the next week or two will require a lot of soul searching. I have been through a lot of treatment. My first triple negative diagnosis in November of 2010 started a cascade of treatments that included me finding out I have a deleterious BRCA I mutation. A second primary diagnosis in January 2015 of hormone receptor positive, HER2 – breast cancer and ensuing double mastectomy find a delayed chemo regimen due to a massive infection. I can’t start treatment until the end of July 2015 for this breast cancer. September
2016 leads to the dreaded “stage IV” diagnosis. I had a rapidly spreading cancer marching across the skin on my chest with visible changes almost daily. I was told then that this situation was dire. Thankfully, and intensive regimen of Carboplatin, Taxol, Herceptin, and Perjeta buy me a stable situation until January of 2018. Since then Dr. Parra and tried Letrozole and Lynparza.
The Lynparza was a swing for the fences that I have dreamed about for a number of years. I had hoped that it would be a gold standard treatment for those of us with these dreaded mutations. It bought me a handful of months of “stable”. No more. I am greedy and wanted it to be a home run. Not just for me, but for my kids and grandkids who have inherited this mess from me. No such luck. This failure feels particularly dark. I had high hopes for a long treatment that would be hopeful for my family members.
As I drift off to sleep I realize, I am not ready to give up yet. I have had very tough treatment that has left me drained, exhausted, and barely functioning. I have had thoughts recently that I might want to consider hospice. But, I find the recent lowering of chemo has given me some strength back. I feel revitalized, and I know I have to keep going. For me, this isn’t just about me, it’s also about my kids and grandkids. It’s about all my family members who have dealt with this dreaded mess, many of which who did not survive. I will continue to ask for treatment with hope that something will work. Please pray for me.
Side note: My breast cancer situation is different than most. Please, if you are a breast cancer patient, do not let my situation lead you to believe all patients go through this. This is a picture of a BRCA I affected patient.
Also, please remember during Pinktober that there are a host of advanced breast cancer patients who dread this month of pink celebration. We live in some odd limbo that isn’t quite the same place everyone else lives. Breast cancer, to us, is the bleak specter of death in the shadows, laughing at us as we challenge it. Please remember us during this difficult month.