When I was pregnant with Lil Phillip- I was prepared for stretch marks. Growing a human in 40 weeks- well there is a lot of growth involved. The skin either stretches or doesn't. I had stretch marks- he was 9lbs 5 oz and pretty much all noggin. I just wanted a healthy baby- if stretch marks and weight gain were a part of the package, then so be it- I wasn't a swimsuit model before- no dreams shattered there.
After my brother Bob had surgery for his brain tumor and chemotherapy almost killed him- he was on super high doses of steroids. He gained a huge amount of weight in a short time. He had the wide purple stretchmarks everywhere. What skin hadn't split was so thin it was almost transparent. It was painful to look at. That was the cancer I knew. It was the ugly side of cancer. Before glitter and ribbons and dancing in ORs before surgery. He no longer looked like my brother. For years after, I would hear or see stories of kids with brain tumors- pictures posted - all were the same bloated look. It broke my heart.
Treatment of brain tumors doesn't have to worry about stretch marks. The advancement in the past 2 decades is nothing like that of say- breast cancer. There are many reasons for this. There are many more women with breast cancer than people with brain tumors. Boobs have generally been favored over brains since the beginning of time(its a procreation thing- think caveman- big breasts imply fertility- great swollen organs that nourish offspring) The blood brain barrier prevents many chemos from getting to the tumors(one way our smart brain defenses protect our most vital organ). Whether the reason is we have better technology to detect the tumors sooner or highly skilled surgeons are able to remove even the trickiest of tumors more successfully- the survival now is much better. There is hope. I remember the complete feeling of despair when my dad was diagnosed just 3 years after my brother- I knew how that would end- but I had to keep hope. you have to. The experience with Bob, altered the approach to Dad's tumor. It wasn't any more successful. In fact we learned that radiation makes some tumors really angry.
I have never read Anna Karenina. It was the assigned reading that year in English. I would drive my dad to radiation treatments. I would sit in the waiting room, reading the same paragraph over and over or realize I was just turning pages. I think cliff notes(for you youngins- cliff notes were the wikipedia for books before the internet- kind of like when we were cleaning out my closet and I found a small tripod.- the girls were fascinated by this ancient artifact- WHAT IS IT? oh my dears those were the first selfie sticks. I think about radiation- I think about Anna Karenina- I have tried to read it- The emotional response is too great. Radiation damage is cumulative in the body. So is the damage to those who are constantly cancering.
Often our tumors are rare- we have to research fast and decide fast. There aren't standards or protocols because there just isn't enough data. I was terrified of radiation because of personal experience. Gamma knife radiation worked for me and it didn't for very different reasons. With Li- Fraumeni Syndrome- we have a mutation in the Tp53 tumor suppressor gene. Basically the blueprint for our p53 is messed up and it doesn't stop tumors the way it should. If you are curious about some of the details- there's a good post HERE about p53 mutations. One of the things it's supposed to do is mark "bad" cells so other cells can fix them- if they can't be fixed- they get taken away. Well the radiation killed the tumor cells in the toomahs in my brain- but for the big toomah we named boobie- my body didn't clean up the dead cells and then responded with swelling. In walks the need for steroids- steroids are derivatives of cholesterols that have so many functions in our bodies. The most important ones are sex hormones(estrogen and testosterone- boy and girl stuff) and corticosteroids which regulate blood pressure and inflammation. We learned tons and tons about corticosteroids with Lily monkey- her body doesn't produce enough- hence our need for medication when she's sick. We use hydrocortisone for her. It is a lower- maintenance dose. Other steroid medications like prednisone are used for allergies and inflammation.
While we watched Boobie the brain toomah- I was put on steroids- to help with the swelling in my brain. It's a balance- I wasn't having symptoms, but scans showed swelling. Being on steroids could cause other problems and mask symptoms. Ironically one of the side effects of steroids is weight gain. The worst side effects of dexamethasone(powerful steroid - 4mg tabs are green and appropriately so for hulk-like behavior it induces) can be insomnia, weight gain, horrible mood changes. I shared some of the fun side effects- insomnia( or now what my friend Row labeled it as(Insom nom nom nomia) lack of sleep partnered with the need to eat every waking second. We used to just marvel at lily- called her the carb monster. She would have rage at chemo( massive doses of steroids). I now understand. Some things you have to experience to understand. Lord help the poor soul that woke her up when she finally fell asleep.
So now that Boobie the toomah remains have been evicted, I am trying to wean off steroids. The thing about the adrenal glands(2 wonderful little organs that sit on the kidneys and make steroids) Is that they are smart. If you feed the body steroids- they stop producing them. Why milk the cow if you can get it for free? SO as you go off steroids- you have to taper so the adrenals get the message to wake up it's time to work again. The longer you are on them- the harder this is. I wasn't on very high doses but I feel like I can't taper off the last bit. I had some crazy ankle foot swelling post surgery- it was so bad even Kiera felt bad for me and would help try to rub the swelling out. One of my birthday presents(besides the ever awesome squatty potty- don't judge we didn't do any of the fun you are getting old presents last year due to said toomah) was a pair of plantar fasciitis compression socks.
After surgery- after my first real shower I went to put my hair up in a ponytail, to keep my incision dry and saw them. THEM. The dark purple huge stretchmarks under my arms. Ouch. Flashback to Bob's skin. Tears. Phil- does it hurt- no, surprisingly no- not in the way you'd think. Not for vanity, not physically. But yet another reminder of where we are at. growing too fast. Steroid weight gain is a beast. I tried salads, walking, whatever- still gained weight like 5 pounds while "dieting" weight. Even talked to the kids endocrinologist- not much you can do except get off the steroids. I was trying.
Then chemo, then the flu- all times my body wouldn't make enough steroid and it needed a little help. Finally I got down to zero. Then chemo Monday. Monday night was not my favorite. My emotions were all over the place, every single body part hurt. Even the stretch marks. When things hurt I find and focus on parts that don't hurt. Yep nope- my cuticle- oh wait there were hangnails nevermind. Funny how with neuropathy- you can simultaneously hurt and be numb at the same time. Not excruciating pain. Just enough to prohibit sleep. So there was the insomnia.
Yesterday by orders of good friends(husband included) I stayed on the couch all day. PJ's and all. Around noon I boiled pasta for dinner, that was the extent of my activity. Daytime tv is not very entertaining. I took a min dose of steroid and felt much better within a half an hour. My sister in law called to check on me and see if I wanted visitors- if it requires getting off the couch or putting a bra on- I'm probably not visitor friendly. Phillip brought Lily home from school- you are still on the couch? You must really not be feeling good. Nope.
Now we keep trying and hope my adrenals wake up rested and ready to go. I'll give them time. No one likes an abrupt wake up. As for the stretchmarks- I'm still here and oh how we've grown. Yes there's the 75 pounds extra that need to go. But emotionally and scientifically since we started, like scars- just extra marks on my body road map of the experiences that make me- me now. No they aren't tattoos- but they tell a story just the same. A permanent reminder of my growth.
Messages for the Mallorys
8 years ago