Plot Twist: Waiting…

There is a lot of waiting involved in cancer treatment. A lot. Even when there is some urgency to begin treatment or perform a procedure, there is waiting.

Sometimes it feels like you will wait forever. Maybe they forgot you.

You wait to get an appointment so you can be properly diagnosed. You wait for test results. You wait in the waiting room for the doctor and then again in the exam room. You wait to be admitted to the hospital and then once you are admitted you wait for the treatment to begin. And this does not even begin to talk about all the waiting and just sitting while you are in the hospital getting the treatment for 5 days.

There are many reasons you spend so much time waiting. The diagnostic tests are a limited resource – a few doctors and more importantly limited diagnostic equipment mean that there is often a wait for an appointment because the resource is fully utilized. Once you have the test performed the raw data has to be read, analyzed, and a report written. And even then the results likely require a doctor to explain them to you.  In the waiting room there are a lot of patients with the same problems you are having and some with much worse problems. The doctors, nurses, and lab are working as fast as they can to provide the best care possible to all the patients. There are protocols in the hospital to make sure that the very expensive medications are not wasted (so they will not even begin to prepare these customized treatments until you are there, the orders from your doctor are sent, and then the medications have to be prepared. The protocols are also in place to make sure you get the correct treatments and tests. This adds time consuming checking and rechecking. This is a safety protocol and any extra waiting is for the patient’s best interest.

Just because you understand the reasons for the waiting does not mean it is pleasant. In fact lots of times it is maddening. I want to get all of this over with. I want to stop feeling bad, being sick, having cancer.

And there is another wait. The self imposed wait. I could have started radiation treatment shortly after I completed chemotherapy. That is the doctors preferred course of action. I was and still am really concerned about the long term side effects of radiation. I decided to take an active waiting. We scheduled a PET scan for 8 weeks from the end of my chemotherapy to give my body time to heal from the chemo and reduce any inflammation that might be showing up in the PET scan as cancer. And while I wait I have been to see the proton radiation oncologist. That team of doctors is currently working on providing the insurance company with side by side comparison of proton radiation therapy vs. regular (photon) radiation therapy for my specific case to demonstrate the significantly more expensive proton radiation therapy will be a more effective treatment by better protecting my heart from the radiation. This is in progress.

I just had my one month post chemotherapy visit complete with blood work. I am recovering from the chemotherapy and I didn’t fully realize the toll it took on my body. I am no longer anemic (yay!). My hair has started growing back and is currently a soft very light colored fuzz. I still look bald. My eyebrows and eyelashes finished falling out but haven’t really started growing back yet. The peripheral neuropathy is gone.  It looks like my gums have started receding (I need to see a dentist about this one soon). I am working on rebuilding my muscles. This was surprising. I didn’t realize how much muscle I had lost. I was too fatigued to move much so I didn’t notice the loss of strength. My leg muscles are so sore just from my daily walks.  I will be going to physical therapy to help me rebuild these muscles.

And, just for good measure I will be seeing a cardiologist to make sure my heart is good. (All because I asked when I will be able to stop taking the metoprolol – the beta blocker that has been keeping my heart rate from being so high).

So there is progress recovering from the chemo.

Even though I have accepted the waiting, it still is there to remind me that I am not done with treatment. I am not done with cancer. So I continue to wait.