Worries creep in…

When you start a new chemo no matter the kind IV infusion or oral, there is always some anxiety of what the side effects may be. Since I have experienced it all from completely debilitating bed ridden to slight nausea, hand/foot syndrome, hair loss, and rashes and much more. Taking a new drug makes all these ranges of emotions surface even though I try everything to push them down. Reading the list of side effects can become psychosomatic, but you must be prepared to avoid mouth sores in the throat so bad, you go to the ER or hand/foot syndrome so bad that you need a wheelchair. With the first dose, comes the relief that you didn’t have an extreme reaction that requires immediate attention. Now, with oral meds, I must get past day 3 in my mind, since some effects creep up and become one more crisis to deal with. Finally, the last thought is always, “is this working?” In the back of my mind, “what will be next?” Then, I start my calculator, but immediately stop it since it is similar to the moments when you wake up in the middle of the night only to look at the clock to see 4am and calculate the 2 hours more to sleep, but you end up awake for the two hours. Of course, with my finding my groove, I wonder how I will leave my house when I am supposed to be constantly drinking water or my bladder will start eroding due to the toxicity of the drugs. Each time I pee, I have to think, “was it more than 2 hours?” I know that the first blood test will determine how these drugs are affecting my bone marrow since the one drug is specifically used for organ transplants so the body doesn’t reject the new organ. I still drink the chicken broth only to be almost growing feathers. Monday will begin with the attempt to change my appointments to negotiate and communicate with the Hoag cancer center. Always there is a mix up and every attempt to prevent this will surely end up with more confusion. On an interesting note, the concerns I voiced to the lab have resulted in the receipt of a Starbucks gift card for my troubles. Plus, my post on the cancer message board resulted in the receipt of a giant box of Heggy’s chocolates. If you have never eaten Heggy’s, you don’t know how delicious chocolates which are hand dipped, hand wrapped are! Plus, just the smell is enough! Guess you never know what happens when you help people or have your voice heard. When I put my voice out there, it is only for the reason to help others waging this war with their cancer. I know others aren’t lucky to have a rock star fake doc like Jim and most don’t have the energy to voice any concern. It always surprised me how difficult the every day living with cancer is…not the disease itself, but all the work involved. Unfortunately, nothing is easy. Every call usually leads to a dozen more calls. So, now with Monday and not one, but two attempts to leave the house only to return to take more meds, I am not in this groove. I think about people including children who have to take daily meds and wonder how they do it! I am thinking that most daily meds don’t cause you to have some sudden waves of nausea that you think you are having a heart attack. (seriously) Add this to the additional side effects for new drugs and I am in the twilight zone of chemoland. I am wondering why I need goggles and gloves to handle this drug that I am putting in my mouth! Try to quickly swallow a horse size chemo pill knowing that you should have your insides coated with some magic dust before it gets to where it is supposed to go. The one chemo pill (I have to take 2 of these twice a day) are coated with a lovely coating of something and did not require a full body armor to remove out of the container while the other (I have to take 3) are blue powdered awful non coated drug. Maybe this is why these burn holes in your bladder. I did read that it is all the chemical reaction. I cannot even wonder about the days to come since I am just in the unknown zone. I have to focus on reliving the Algebra crisis with Alex (oops, he cannot read his writing) and we have to decipher his hieroglyphic symbols only to determine that he forgot a negative sign. Enjoying listening to tween boys talking about so much silliness that I now have a glimpse into what was going on while I was in my flashback of tween time focusing on my hair and makeup. Bottom line, there are hair crisis with both. It is all normal and all fun. Enjoying cleaning Jim’s office wondering why he keeps all this clutter (oh, I mean why I keep all this clutter). Still looking for the binder of info that I put in such a special place that I am sure it will reappear one day. Laughing with friends, hearing their stories, talking to my family about the week of activities. This is what is all about. Enjoying every minute of every day despite my frequent visits to the “office” (bathroom) and multiple schedules of pill taking. I can do without the overwhelming fatigue that it seems like my head is too heavy for my body, but all the rest is just what I do. You can still make me laugh with your worries and I see you are laughing too when you even mention them without a thought. I go back to what Alex says all the time, “no one can understand what I worry and think about unless you are me.” Perspective…I learn something new everyday and I am thrilled to be able to learn and grow every chance I get. I hope you find your fun. If you stop running and hurrying for a moment, you might just glimpse into a lesson learned and push your worries away.

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