The last few weeks have been tough, to say the least.
The great news is, as of July 21, I have completed the TCH chemo protocol for HER2 positive neoplasms. TCH stands for Taxotere, Carboplatin and Herceptin. I discuss these drugs in the Battling Bertha 2 post.
That last round of chemo was a doozy. I ended up with a terrible infection and spent the better part of 2 weeks in bed. I also required IV fluids twice.
I was prescribed the antibiotic Levaquin for the infection. Turns out, they use this drug to treat Anthrax. It’s some powerful stuff. One of the possible side effects is that it may cause you to snap a tendon! The pharmacist passed along this tidbit, not the doctor. I read on the package, not to take the drug with magnesium. Magnesium is in every electrolyte beverage, including Smart Water, which I was drinking because I was dehydrated. This is why you must ALWAYS research any medications you are prescribed!!
I survived the Levaquin with no incidences, the infection is gone, and I am feeling much better!
Pick Another Fortune Cookie
Shane and I met with my oncologist on the 28th and I was blind-sided when he told us I had to have surgery right away.
My follow up PET scan is scheduled for August 11th. In my mind, I thought that the next treatment step would be determined after the results of the PET.
I know that the neoplasm I call Bertha is gone and that the PET scan is only a formality to prove that I am right.
Surgery was not even a slight consideration in my mind because if Bertha is gone, what’s to remove?
Turns out, the boob has to go.
According to the oncologist, I have two choices: a lumpectomy followed 6 to 8 weeks of radiation, or a mastectomy. Opting out of surgery is not an option in his mind.
Shane asks questions about radiation, how it works and its’ side effects. Twelve lasers will be pointed at the site of the former neoplasm, 5 days a week for 6 to 8 weeks. Possible side effects include third degree burns and damage to the esophagus if the lasers are not positioned correctly.
As he was telling us this, all I could process was that my body was fighting a horrible, debilitating infection. I was dehydrated, weak and very unfocused. Here he is pushing me to have surgery right away and all I cared about was getting the infection cleared.
In my fog, I heard him say:
“HER2 positive is very aggressive.”
“Before Herceptin the survival rate of HER2 positive was very low.”
“If it was my wife, this is what I’d want her to do.”
“I will do everything I can to save your life.”
The doctor tells me he is sending me to the best breast surgeon in the greater Houston area. His office assistant tells me the surgeons’ office will call me the following day.
Then, off I go to the infusion room for some IV fluids, where one by one, the nurses come by to reinforce the need for surgery right away.
I waited Tuesday to hear from the surgeon. Since his office did not phone, Wednesday I called my oncologist and discovered the best surgeon in the greater Houston area does not accept my HMO. I felt a sense of relief.
Insurance open enrollment is in September. I figured I could change to the PPO plan and have the surgery in October; give myself some time to process it all. They are going to remove part or all of my breast. The breast that fed my baby as we bonded through her infancy will be gone. This is not an easy thing to process.
August 1, after my weekly lab appointment, Shane and I have lunch at a little Asian bistro near the clinic. At the end of the meal, I open my fortune cookie and written on the little white rectangle inside is: “Pick another fortune cookie.”
Rather profound, eh?
I wasn’t ready to understand this message, but I knew it was important, so I tucked it away in my wallet.
Frustration = a form of self pity
August 4th, we met with the oncologist again. He asks how my appointment with the surgeon went. I tell him the surgeon does not accept my HMO. He tells me he had an hour long consult with that surgeon about me. Then, suggests another surgeon and reiterates I need to see him right away. I tell him about open enrollment and that I could have the surgery i October. He says it can’t wait that long. He is going on vacation and wants me to have the surgery before he gets back. It’s that urgent, in his mind.
All I can think is, I haven’t even had the follow up PET scan. We don’t even know what we are removing!
The three of us walk to the assistant’s desk where the doctor tells her that I need to see the alternate surgeon right away. She tells him she doesn’t believe the alternate accepts my insurance, either. The doctor asks to see the list of in-network surgeons. We scheduled Round 2 of Chemo (Herceptin only, every 3 weeks for one year), plus a follow up appointment with the oncologist, and left expecting to hear back about the surgeon.
The following day, yesterday in fact, I called the office to ask about the surgeon. The doctor has already left on his 2 week vacation and his assistant was not in the office.
My frustration reached a pinnacle. I vented to my Bye, Bye Bertha team in our private Facebook chat in a very incoherent, rambling tirade.
Then, Cynthia Powell, an amazing and inspirational work-at-home-mom, posted “frustration = form of self pity” to her Facebook wall. It was exactly what I needed to read to spur me into action.
I called the seven surgeons on my HMO provider list and asked, “Does the surgeon do mastectomies and lumpectomies?”
My heart sunk with each no. I heard no six times. On call number seven the answer was yes! Of course, this particular surgeon is in the Houston medical center about an hour and a half drive from home. Not convenient, but he accepts my insurance!
I called my oncologists’ assistant and left a voice-mail message with the surgeon’s information and asking for confirmation that the oncologist approves. I will wait to hear back before scheduling an appointment.
What about the fortune cookie?
We each must make our fortune. If we don’t like our fortune, we are allowed to pick another.
I don’t like the idea of surgery. I don’t like this feeling of being rushed into something that I don’t want.
Now, I am not so rushed. I can walk this path slowly, with clarity, and know that at the end of the journey Bertha will be gone forever, leaving me to live a long, happ, productive life with my beautiful daughter and incredibly supportive spouse.
All is well.