The Real Toll of Having Cancer.

Unless you have gone through it, I don't think anyone can really understand the complexities of having cancer. Of course people are aware of chemo and radiation but they don't comprehend what those words mean. Yes they know what the simple definitions are, but not what the actual treatment does to a person.

The most common side effect that most people not having had cancer equate with chemotherapy is vomiting. Actually that is much less of a side effect than it used to be. Now even before beginning to administer the chemo they give you an intravenous injection of an anti-nausea medication and, with the wonderful anti-nausea medications on the market such as Zofran I certainly would not put this high on the negative side effects list. Stomatitis which is the development of sores inside the mouth (and which actually occur within the entire digestive tract down to the anus) would have topped my list until last weekend. The mouth sores are so excruciatingly painful that I could open my mouth no more than an inch. Not only were they inside my cheeks but behind my lips in front of my teeth. This made eating anything nearly impossible and my oncologist warned me that he WOULD put my in the hospital if I wasn't at least drinking to stay hydrated. I promptly promised that I would.

Last weekend, I had glanced down at my feet and noticed they were extremely swollen with 3+ pitting edema. This is when you press on the area with your finger and it stays indented with the finger mark. Not good as this indicates the retention of fluid and with chemo, possible blood clots. So off I had to go to the Emergency Room as per my oncologist's orders to rule out any clots. Thankfully no clots were found however the question then became what is causing the edema. I have no prior history of any high blood pressure, kidney problems or heart problems and so the concern was heart damage from the chemotherapy, potentially congestive heart failure.

I had an echocardiogram done today which confirmed that my heart was fine and since the swelling was being controlled with diuretics they will continue to "watch me" to make sure things don't get worse, especially since I have my next course of chemo starting on the 17th. Of course the chemo wipes out your red and white blood cells as well as your platelets. This greatly increases the chances of infection from even the smallest thing since your immune system is basically shot. It also causes anemia which presents with being tired all the time. Exhausted is more like it.

As for the radiation, for my type of cancer (anal) this can cause burns from the front to the back. These burns can be very severe and the pain is intolerable. Your body starts to involuntarily shake because the pain becomes so severe, and pain medications do not totally take that pain away. Going to the bathroom is a nightmare. The urethra can get burned as well and urine passing through it burns like battery acid. Having the urine touch the skin is just as bad, and having a bowel movement, if it's not diarrhea caused by the chemo can feel like you are going to be split in two. The anal fissures which are like papercuts around the anus are very very painful as well and often will bleed.

One would think that you could use Desitin or some other type of cream or ointment, but you cannot have these creams and lotions on the skin during radiation so they must be wiped off. Not sure which is worse, doing without them or having to wipe them off twice a day. Yes, my radiation treatments are twice a day, not once as most people undergo. This is because as my radiation oncologist says "No one goes through Nigro twice!" The Nigro protocol takes its name from the gentleman who developed this protocol for anal cancer and has been in use for over two decades. It involves approximatley 5,400 rads of radiation and chemotherapy with 5-FU and mitomycin. The chemo sensitizes the cells so that the radiation has a high affinity for the cancer cells, unfortunately it also has a higher affinity for other fast growing cells as well such as the lining of your colon, rectum and anus.

The last time I went through this, treatment had to be stopped after 3,000 rads because the pain was simply unbearable. This is a good thing in the sense that not having received the maximum dose then is what has allowed me to receive radiation now. But radiation thins the skin and my skin in that area is already thinned not only from prior radiation but also from the many laser surgeries I have had to treat AIN. The main symptom aside from the radiation burn is the fatigue. When I come home after my morning treatment all I want to do is sleep until I have to go for my afternoon treatment. This however isn't possible because of the other "side effect" - exhorbitant bills!

Instead of sleeping, I'm either on the phone, or having to physically go to the various assistance agencies just to keep the lights on. Oh yes there are numerous agencies and foundations which assist patients with cancer but guess what - not for anal cancer! Your read correctly. They'll help with anything from your medicine co-pays to utility and rent bills but not if your diagnosis is anal cancer. Colorectal sure, which makes no sense to me at all. These foundations which exclude anal cancer include CancerCare, the Patient Advocate Foundation, and the HelpWell Foundation just to name the most notable.

The social workers are supposed to help with this, but frankly, all they do is hand you lists of phone numbers for places to call. Most of the time when you call these numbers, they simply give you more numbers. It is totally exasperating! This is a double whammy for me. In most cases it is the patient who must call because of medical privacy issues. A patient's family member can call, but my daughter is only 17 and is having a hard enough time coping with what she sees me going through each day. She doesn't know what to ask or how to ask, and she certainly is not allowed to substitute for me for those agencies which require the patient's (or the patient's spouse) physical presence. I have no spouse or significant other to do this either and so, I repeat my story (which doesn't help at all emotionally) over and over again to be rejected over and over again.

Because this situation began last July when I found this anal lesion (then in situ), and because I had three surgeries last fall alone (in addition to numerous procedures) the agencies which will help me did so last year and will not help more than once in a 12 month time period. So, until later this year, I'm currently out of luck. Some people might wonder about my book. While the manuscript is currently finished and with the publisher, it's on a bit of a hold right now. This is a self-published book and so I have received no advance royalties or payments which could assist during this current financial crisis. The current state of the economy doesn't help either since there are so many more people than usual applying for assistance with things such as utility bills. My trip to the hospital takes an hour round trip, and the cost for transportation also becomes a major issue especially when I'm having to go twice a day. I doubt anyone knows how difficult it is just to obtain a gas card to help with the travel expense. The receptionist at the radiation facility overheard me talking with the social worker and actually had me follow her to the gas station where she put $20 in our tank.

I am unable to work and am receiving disability. As most know, even without having claimed it (or unemployment) the benefits don't come close to what you earned at your job. It also doesn't help when you have an ex-husband who is self-employed, hasn't had work and therefore cannot pay the child support on a consistent basis. The emotional duress of not knowing these past several months just how much if any of my child support I would be receiving and when has left me hoarding what monies I do have. This has meant compromising the one place possible - the food bill, for fear I'll need another prescription and not have the money. I can't tell you how many nights I've cried myself to sleep, and this isn't helping my immune system!

The co-pay for the oncologist is $50 a visit, so I needed to see him after being in the ER. In addition, I was given new prescriptions, a diuretic to address the edema and potassium resulting from decreased electrolytes from the diuretics. He also had to give me two new pain medication prescriptions so by the time I got finished I had another $110 in unexpected expenses within just three days. These things are impossible to plan for. I certainly didn't anticipate leg/ankle edema resulting in this whole escapade.

When I go for chemo (have had one cycle already with one more to go), it requires four visits to the oncologists office. One to take blood a few days or so before the chemo and yes, it is a $50 co-pay just to walk in the office and have blood drawn. Then there's the day they start the chemo, two days into the treatment when they have to change out the cassette which holds the chemo since the infusion device which you carry around in a fanny pack only holds two days worth, and then of course the day they disconnect you. Five days or so and wham $200. If it was not for my son delaying his mortgage payment to take care of my electric bill for June (due in July) we would have been in the dark. If not for my church paying the July electric bill due this Friday, we'd also have been in the dark. But they cannot continue to do this each month either and next month will be (pardon the pun) a crap shoot.

It is difficult enough handling a diagnosis of invasive cancer and then coping with the side effects of chemo and radiation therapy when you have a significant support system, it is nothing short of overwhelming when you don't.