You know that feeling when you are clicking along just fine and someone or something pulls the rug out from under your feet? It is a horrible feeling.
That happened to me at 11:00 this morning and it took all day for me to pick my heart back up off the floor and press forward.
Last week my oncologist checked my immune system. The day I saw her my husband drove me to the appointment because I was curled up in a ball very sick with a stomach virus.
When we entered the patient lobby, I put a mask on so I would not expose the other patients to whatever I had. While waiting to see the doctor I nestled against the Hubs and quietly moaned because that stomach bug was too miserable to be completely silent. Tears pooled in my eyes while I tried so hard to think about anything besides how I felt. Other women who had been sick from chemotherapy brought tissues to me. Assuming I was nauseated from chemo, they tried to comfort me with words of “I have been there sweetie, it gets better”. I so appreciated their kindness, I did. But part of me felt more lonely, more isolated by the fact that I knew I was sick because of immunosuppression from daily chemo that I will probably take the rest of my life.
Since my diagnosis in 2007, I have learned so many things about cancer. A couple of those lessons:
- Patients are very kind to one another –> we are all stuck in this together, we hate it and there is a lot of compassion for each other. That incredibly nice and refreshing glimpse at humanity is found in this community.
- Different cancers have different types of treatments. Some people go trough harsh treatment and they are cured. Other people (people like me) have less harsh treatment but we have to stay on chemo forever and we live in a state of immunosuppression from ongoing chemotherapy.
Last week my oncologist ran a panel to test see how low my immune system is. We already knew it was suppressed because a year ago right now I was severely sick with a drug resistant respiratory infection.
Last March she tried to boost my immune system with an IVIG treatment which is the gold standard treatment for immunosuppression. It usually works wonders for people and lets them live normal lives. Unfortunately I had the rare but very serious serum sickness with chemical meningitis response. At that point my oncologist told me that IVIG is not an option for me. I cannot take IGG supplements by mouth either. I am too allergic, it is too risky.
So today at 11:00 I opened an email and saw my labs. I saw that my IgG levels are dramatically lower than they were the last time they were drawn.
My levels Are. So. Far. Below. Normal.
I cried. I reacted strongly out of fear. My to-do list dropped and absolutely nothing got done.
I sat in a puddle of tears and allowed my mind go to that worst place. I sent a flurry of texts to my sister, my parents, my husband seeking comfort.
Some of you will read this and criticize me for reacting in fear. I agree, I should have responded better. However, I am a person with all the feelings and at times I break.
While I was waiting for my oncologist to return my call, I made a cup of Bulletproof Turmeric Latte (because I incorporate antiviral turmeric into almost everything these days).
I sat down on our couch and looked out the window. My husband pulled into our driveway and I exhaled. I thought about how grateful I am for this man who has become my rock. God put such a strong man by my side. The Hubs is always steady, even when waves come crashing down in my healing journey.
A nurse from my oncologist’s office called. She was surprised that I had already seen my lab numbers. She argued that was not possible for me to have seen my numbers. I told her they came in an email on my patient portal. She continued to try and argue about the fact that I should not have seen them yet and I told her that none of that mattered, I just wanted some guidance because I felt scared.
I asked if my immune system is going to continue to fall and she said that they don’t think that it will. She said that the numbers today are similar to my numbers a year ago. She said that they they believe this is my new normal.
She told me that I have a condition called Immunodeficiency and I am going to have to learn to live with it.
She went on to explain that “everyone has something: some people have diabetes, some have”…I don’t remember the other examples she listed…
In honesty, I wondered if she had looked at my medical chart because I personally have learned to live with a lot.
The conversation left me feeling like I needed to speak up for myself and my life experience.
As tears streamed down my cheeks, I interrupted her. My voice cracked with heartbreak when I said “I have become quite courageous in my 45 years”.
I asked her what we need to look for, how do I know if my immune system drops further. She gave me guidelines.
So this is where I must practice what I preach. I must walk by faith, dream big, believe for healing. I must look beyond the numbers.
Last year my oncologist told me that most of her other patients who have the same immune count I have are on at least 1 antibiotic per month. I have not had to take any antibiotics since the infection ended last January (a year ago).
She also told me that summer would be my easiest season and fall would be my hardest season. While I did catch viruses this past fall none of them knocked me down severely.
This past fall I started socializing again. I was cautious and picked small groups and I moved forward. We found that for the first time in years my body is strong enough to get over viruses. I am able to use antiviral, nutrient dense foods and juices to nip colds and bugs in the early stage. In fact, I am healthier than I have been in years.
So as scary as those numbers are I must look beyond the numbers and walk by faith, speak life, eat nutrient dense foods, drink antiviral juices and focus on health.
I am well and I am good. Today’s’ news scared me and set me back for a little while. But it was only numbers. Nothing changed.
I am still healthy. I am moving forward.