Amber is mom to Julia, and she's angry. You can read more from Amber at Little Papi and Punpkin.
I'm angry at cancer right now.
We have been blessed with an obviously God-given peace in these months waiting for Julia's GI surgery. The intense anticipation and urgency we could not shake a few months ago, has been replaced. It was definitely not something we did. The situation has not changed. The need has not changed. The surgery has not changed. And the damage we are causing in the meantime has not changed. I have no other explanation than God.
Last week though it hit me again like a hammer. I was laying Julia down on the floor to begin another round of her laxative regimen. As she looked up at me, she said with tears in her eyes, "I don't want to have more surgery. Not even later. I promise not to cry anymore when we do these medicines, just please no surgery." My heart shattered again. I hate cancer and what it has done to my child's body and life. I hate that I have to talk her into being sedated for the 14th time like it's something normal.
I hate cancer because of the role it pushes moms to fill. In an instant we go from the loving, nurturing, protector to the mom that has to repeatedly lead our child to the fire and force them into the pain. Every cancer family has their own specifics whether it's port access, chemo drugs, sedation meds, sedated scans, bone marrow biopsies, home injections, spinal chemo, painful suppository laxatives and enemas, finger pricks, IVs, chest tubes, NG tubes, and the hellish list goes on.
We have to calmly deliver our child to the pain and push them into it... over and over and over again. Sometimes alone in the privacy of our homes, sometimes in suffocatingly small exam rooms, sometimes on display for all the world to see. Sometimes we are the ones inflicting the pain. Sometimes we are restraining them with all our might while trying to talk with calm, loving words. The irony of the whole scenario is probably most disturbing to the child. And other times we stand helpless in the corner while our hearts lay open on the table with our child. And it never gets easier.
It goes against everything our souls tell us as a mother. Yes, there are therapists to help and techniques to use, but it doesn't stop the pain. The screaming, begging, pleading, tears, and anguish still happen. Knowledge and coping cannot erase that. The dart in the battle are still thrown and pierce a mother's heart in the deepest places. The therapy removes the darts and puts on a bandaid, but the holes remain.
Julia dreads her daily laxatives and suppositories because of the hour of pain she know will follow each round. And now she has a raging diaper rash that is making the process excruciating. We are using an array of creams, blocks, anti-yeast drugs, etc. and things improve only to flare up at the next diaper change. It is just the last straw seeing her in such pain. The scream is just anguish. Even basic water on her skin is too much.
It just makes me so angry.
And to add insult to injury, you have to pay for all of this suffering. We received the statements from Julia's week-long January hospitalization- the week of torture. We paid 5 figures for that event. The next time I see that many numbers in a row it better be a family vacation to someplace tropical! It is crazy that a 4 year old should meet their deductible in the first 6 weeks of the new year and that the maxed out FSA funds will be gone by spring. But that is the world of cancer and we hate it.
I am angry at the relapses. For all the families we love right now who have been dealt the only blow worse than the initial diagnosis. "Your child has relapsed." And for some the confusion continues. The world of medicine is far from black and white, as much as it strives to be. The world of pediatric cancer is often the grayest of them all. Cancer cells play by their own rules. How many times should you subject your child to labs, spinal taps, CT scans, bone marrow aspiration, lung biopsies, and chest tubes only to be told there is no real answer or protocol? Even the most high tech scans do not give definitive answers, just guesses, so you go in for a biopsy, but the pathology is unclear. The doctors are not sure what they are seeing or it shows some evidence there may, possibly be cancer, but hopefully not. "Would you like to go home and wait and see or sign up for 6 more months of poison and torture?" Are these really options? Sadly, this is the reality for so many.
I am so angry at cancer right now.