Surviving Chemo part 1
Tips for getting thru it
* Editors note* Okay. So for the next couple of installments the posts will be a tad more frequent until summer break? Sorry about the delay.*
So it's almost a year to the day I began chemotherapy for my diagnosis of Triple Negative Breast Cancer. Between receiving, processing, researching, fighting and eventually accepting that I was actually going to undergo chemotherapy, I searched high and low for a Triple Negative Breast Cancer survivor who had not undergone the toxic treatment. The thought of becoming sick, losing control, going bald and dealing with the reality of a breast cancer diagnosis was overwhelming and I did not want to accept it. The thought of chemo was asinine to me and I just needed confirmation from just one survivor, that chemotherapy was not the end all or be all, but sadly I could not find them. So begins my absurd, zany, humbling experience of chemotherapy and how I survived it. It's straight talk, with no chaser and feel free to leave the room now if it's a tad ugly. As always, I had my maddening moments. Let's start with day 1.
The Original Plan:
The original plan was to go with my second choice of Medical Oncologist a.k.a. the Mad Scientist. I had been going back and forth with him (via text) on what type of chemo I was willing to be treated with and the fact that I knew I was supposed to start a pre treatment plan of medications, but had not received guidance from his office. (This simple fact, helped me in the decision that was about to play out).
Tip #1- Prior to starting chemotherapy, have a solid, educational conversation with your doctor, and one of the oncology nurses. If this does not happen, I would not recommend beginning therapy! You need to be educated on what the drug is, the side effects to your body, the preparation entailed (will you need to insert a port, what other medications are involved, can I get these pre meds before I start chemo, do I need to prep my house, family, job and body and most importantly will my insurance cover the cost?)
The morning I woke up after feeling really loopy after taking taking some pre-meds (steroids) to help with the side effects of the chemo. It was a crisp spring partly cloudy day. As luck would have it I had an appointment with my mental health/social worker that morning, before I was scheduled to meet up with the mad scientist. I was not too pleased at all with the lack of communication and was in a southpaw stance, ready to strike, if the situation started to roll down hill.
I arrived at my MSW's office promptly and of course she could read my aura immediately. I felt like a caged lion, pacing the exhibit, ready to strike and she immediately honed in on that energy. The beauty of her keen understanding of how I was doing, sensing my deep guttural dismay and acting upon it was something that would change the course of how I was going to receive my treatment. My MSW undoubtedly knew that it was a time sensitive situation that was developing and we/I would have to act quickly. My MSW urge me to give my insurance company a one last call, before I made my trek to the mad scientist office. This phone call would ultimately change my treatment plan.
Tip #2 - Get a clear, educated, concise understanding from your insurance company on what your plan covers. It's not always about asking the question, it's about asking the right question. The question that I had not asked that would change the course of my treatment plan was: "If I have paid/met my $2,000 out of pocket deductible already for the calendar year, will my chemotherapy treatment as well as treatment by my medical oncologist be covered at 100%. Answer from insurance customer service rep: "Yes, your treatment will be covered at 100%, if you have paid/met your out of pocket deductible for the calendar year, by the time you will begin treatment."
That answer meant that since I had already met the out of pocket deductible I would be able to see my first choice of oncologist, in a different center, without having to incur/be financially responsible for a whopping 40% of a chemotherapy treatment or oncology bill. At that moment, I paused, called my first choice of oncologist, explained the situation and was given the red carpet treatment! Remember, cancer care is a business and insurance companies will not always volunteer information. If I had not asked that question, I would have began my treatment with Mad Scientist at his treatment center. Now don't get me wrong he is extremely talented and had a highly successful and dedicated practice, but for my particular needs, what I required was a "Handler", and my first choice of oncologist knew exactly how to do that!
The New Plan:
So now the choice had been solidified and it's up to me to follow thru. My MSW bid me good luck and sent me on my way to face the dragon. It's now mid morning and there is a flurry of activity at my oncologist office. She asks me specific questions to double check that I have not undergone treatment with Mad Scientist. I verify I'm still a chemo virgin and we move forward.
An oncology nurse greets me and preps me for what's about to happen. Now this is where things get real funny and funky.
Tip #3 - Trust your gut. I was already nervous and dreading the whole chemotherapy experience and still feeling like a caged lion. My gut feeling kept saying delay the treatment until Monday, but my oncologist pushed on, indicating that I was already at the six week mark post op (I had had a lumpectomy in March) and that statistics and standard of care indicated that I should have begun treatment 2 weeks ago (probably the 1st week of April) and the window of opportunity was closing fast. My gut said, a couple of more days will not make any difference in the scheme of things and ultimately I should have listened to my gut.
So after the nurse inserts a needle , and tapes it down securely to my arm, I alert her that I need to move my car off of the parking meter. I proceeded to walk out, get in my car, and kept going. That's right, I went home, IV stuck in arm and all, I went home. You can call me belligerent, you can call me reckless or even crazy, but my body was screaming at high volume not to begin chemotherapy. So, I listened, just for a moment, in the quiet of my home, I listened. The sanctuary of quiet allowed me to think and deal with my fear. I began to gather the supplies I would need, and gave myself time to process what was about to happen. This went on for about 2 to 3 hours. I chilled, ate lunch, did some laundry, watched some TV, you know, all the usual stuff one does when escaping from the hospital. Whew baby. By now my phone was ringing off the hook, first the chemo center, my doctors offices and finally my mother, who had been contacted in an attempt to gain some leverage. The patient was AWOL. Yep.
Finally the realization set in that I would have to make a decision. I recalled the words of a retired doctor, my friend from Miami recruited to offer up an opinion. His words, rang crystal clear as I took one last look in bathroom mirror: "Karen, you will never know if this treatment will work if you don't try". "It's like rolling the dice, you have to get in the game to have a chance to win." "If your not in the game, you have 0 chances, but if you play, you've got a shot".
I settled down, pulled myself together and went back to the chemo center. The late afternoon sunshine filtered thru the windows as the startled receptionist called the oncology nurses to let them know I was back in the building. Yeah, my label as the troublemaker/dasher patient had firmly been established and I did not give a damn. The nurses huddled around and quickly checked my arm. I was escorted into a infusion room and settled into a comfy leather chair. The humming of machines filled my ears and I could see the nurses eying me wearily from outside my room. Warm blankets were placed around me and calm voices attempted to sooth my quiet, but obviously apparent anxiety. Turns out my designated oncology nurse was not on duty (she was off this particular day). I was given a replacement floater nurse who greeted me cheerfully.
The floater nurse was nice enough, verifying my date of birth, checking out my ID bracelet, what I was there for (sweetie, it damn sure wasn't for the lunch!) and what chemo treatment I had agreed upon. Phone calls were made and my very expensive chemo drug arrived shortly afterward. The floater nurse explained what was about to happen and some of the sensations I would most likely feel. I kicked off my shoes and socks and asked for ice (you'll understand in the next post)
Next Up: Surviving Chemo pt 2. What actually happened, what could have been done to prevent it (the infamous burn) & a detailed list of things I needed and did that helped alleviate pain, nausea, how to stay organized with the medication schedule and how I avoidedthe dreaded neuropathy.