Let’s Get Physical

In the eight months of blogging about my strange/spiritual journey with osteosarcoma. I have mentioned a few different physical aspects of what the treatment of this disease has been like, but have mostly focused on the emotional, spiritual, and observational side of things.

Today I am in week two of my eighth chemo treatment. After this month, I will have one more round of two weeks of chemo, and will be done! My oncologist, however, is holding out on declaring nine to be my final treatment, and says he may still be ‘game’ for one last treatment of High Dose Methotrexate. Oh joy.

While I don’t think I have given an entirely Pollyanna view of cancer treatment, I have also not given a view of what it has been like physically. I should issue a Debbie Downer alert here, ‘cause it is not all pretty.

Cancer Treatment Head to Toes:

Head – obviously -no hair, no eyelashes, no eyebrows. While a great timesaver when getting ready to go to the medical facility of the day, it was initially tough losing my hair. It doesn’t hurt but it is distressing at first to have your hair stay on your pillow after your head has left it, or on your hands when you touch it - but then it becomes more of a nuisance and housekeeping nightmare. By the time my dear friend Sam came over to my house to shave it all off, I was ready to stop the drama of the process and get it over with. I am used to being bald now. What I am not used to is having no eyebrows. My face looks ghostly without the definition of them.

Brain – Recent studies have confirmed the phenomenon of Chemo Fog. Why it would have ever been considered a phenomenon confounds me. For the colossal amount of chemicals, drugs, and nuclear meds that have been pumped thorough me for these eight months, it is amazing there is only a fog and not a total blackout. The Fog is very real, for example; John and Anna brought home a new car to try out one day. I evidently saw the car, sat in it, commented that I liked it, and now completely do not remember any of it.

Ears – Cisplatin (one of the four chemos I am on) damages your hearing. I have a hearing test every time I get Cisplatin to see how much damage has been done, and whether to lower the dosage. So far, I have lost the ability to hear low tones and have an almost constant high-pitched hum in my ears. None of this is helping my singing career, of course neither was my singing.

Eyes – It turns out eyelashes have a purpose. They keep things from getting in your eyes. You know this for sure when they are missing.

Nose – With no hair in your nose, when you have the slightest tickle, you need a tissue immediately. Those little hairs in your nose not only filter what goes in, but what comes out. Not a big deal, but I am armed with Kleenex at all times now.

Mouth – High Dose Methotrexate (HD MTX) causes wicked, painful, open sores to appear all over the inside of your mouth. Once you have them, you have them for 10-14 days. Which means you have them until you start HD MTX again. And get them again.

Overall Head – one of the first things you know about cancer treatment is that you do not want to get a virus on top of cancer. Therefore, your oncology team will coach you to learn to not touch your face. Just don’t do it – if you must, use a tissue as a barrier on your hand.

Clavicle – just below my right clavicle is my port. This is the device through which all meds flow. It was placed under my skin in October with minor surgery. It has a direct line to my heart on one side and my jugular on the other. The chemos are too toxic to go through arm veins. They would burn through them by the second treatment. Mine is a dual port, so I can get two types of chemo at one time. Lucky me.

Body Temperature – Two of the four chemos I am on cause ‘early onset menopause.’ I am either irrationally hot or inexplicably freezing. Having spoken with a few of my fellow pediatric patients, they also have this going on, even the boys. Go figure. We like to say that I am still hot, it just comes in flashes now.

Whole Body - for at least three out of every four weeks of the month, I am on 24 hours of IV. I have a backpack that goes with me everywhere. The IV keeps the residual chemo moving out, gives me some meds, and works out my arms. Hey- A liter is heavy!

Esophagus - Because I have vomited so much toxic, uh…stuff in the last eight months, I have the esophagus of an old Moonshine-guzzling troll – so I take a prescription like Zantac twice a day so I can eat and digest comfortably.

Heart – One of my chemos – Doxorubicin, can damage my heart. I get an ultrasound and EKG of my heart every time I get this in my chemo mix for the month.

Fingers – My fingernails bend and curve at angles not normally seen in nature. They tell me it’s normal - I think not. I keep them short now to keep the weirdness to a minimum. Also, once a month I get a ‘finger stick.’ Deceitful lab ladies – this ‘finger stick’ is more of a deep, long paper cut they inflict on me with a small razor that ‘bites’ my finger tip. Enough blood flows out to fill a vial. I know I sound whiny here, but that cut hurts for a week! They try to make it all better with silver sparkly disco band-aids. Kind of does help…

Boobs – mercifully the same. When people see a scarf on my head, they immediately think breast cancer, and check out my boobs. Then again, why would they look at me and think ‘rare pediatric primary bone cancer’?

Bladder – Under constant attack. Ifosfomide (another of my chemos) damages the bladder. This little thought of, lowly piece of body mechanics becomes more important to you the more you feel in danger of not having it function properly. So far so good! When I get Ifosfomide (it is infusing right now along with Cisplatin as a matter of fact), I also get an IV med called Mesna. Mesna’s job is to protect my dear, VIP bladder from the onslaught of Ifosfomide. Yay Mesna!

Kidneys – Another unsung hero, they are under siege monthly by HD MTX. My kidney’s job is to remove the HD-MTX from my organs BEFORE I become toxic, but AFTER it has been absorbed by cancer cells. Once maximum ‘safe toxicity’ is reached, I receive a rescue drug (seriously, it is called the rescue drug), called Leukovorin. This drug helps my body release the HD MTX before too much is absorbed my organs. Keep up the good work kidneys!

Other bodily fluids – blood and pee specifically– suffice it to say these are not my own property any longer – surrendered on demand, and studied and reported on with military precision to more people than I care to count. I will perhaps be most relieved post-treatment when I get to keep such things all to myself again.

White Cells – An ongoing battle of white cell count rages within! Post chemo, their numbers are cut down to zero to just above zero. Without these essential cells, a body does not have the ability to fight off any infection. Therefore, our house goes into lockdown – no shoes in the house, everyone must practically bathe in sanitizing gel before initiating physical contact with me. We also move to the Neutropenic diet (AKA the 1970’s diet), where no fresh fruits or vegetables may be consumed due to bacteria living on their skins, no sushi and no meat that has not been over-cooked. Jell-O is (sadly) acceptable.

Stomach – We have started using a drug called Emend that coats my stomach, protecting it from the onslaught of the harshest rounds of chemo. It, along with a few other choice prescription medications, has mercifully helped to slow down nausea. Having said that, nausea is a fairly constant companion that I am always trying to appease.

Leg – The cancer was in my tibia (calf bone). We were told very simply there are two options, Amputation and Limb-Salvage surgery. While this does not sound like a difficult decision, it kind of was. Amputation, thanks to our military, has seen huge advances. A more active life can clearly be had with a prosthetic leg, than with a ‘salvaged’ one. We ultimately decided that we could do Limb-Salvage then Amputation, but not the other way around. Limb-Salvage surgery took 12 ½ hours and two weeks in the hospital. My tibia, knee and ½ of my Fibula (thigh bone) were replaced with titanium, and thanks to the benevolent person who donated their body to science, I also had my tendon replaced with ‘donor tendon.’ To the outside world, my leg looks like it was in a gnarly skiing accident. I am going on 10 months on crutches and or wheelchair reliance, and have lots of physical therapy ahead, but I should be able to walk again by August, God willing!

Feet – A few weeks ago, to my great amazement, my left foot’s toes were able to scrunch my foot forward into my shoe! With a mostly artificial leg, my toes somehow got the message from my chemo-fogged brain to inch forward! This small feat/feet (haha), gave me great hope that I would be able to use my leg again as my leg.

Other- There are long-term affects as well, though not ones you might expect:
~No Buffet Food – ever. This does not break my heart as I am not a big buffet fan anyway. But, it also includes potlucks, which can be awkward to attend with a plate of personal food.

~Antibiotics before any dental appointment – because of my large prosthetic, I must forever take antibiotics before any teeth-cleaning or dental work. Both this and the buffet/potluck rule are because any bacteria that enters my body can attach itself to the prosthetic and cause an infection of the surrounding tissues. This would require ‘Revision Surgery.’ Which is a do-over in surgeon-speak. No thank you!

~Minimal Sun Exposure – Generally NOT a problem in the frozen tundra of Lake Placid, where winter lasts for eight months or so . High doses of chemotherapy given over a long period of time makes skin very sun-sensitive, and prone to exceptionally bad burns and skin damage.

My battle is obvious to anyone– wheelchair/crutches/bald head – one of these is bound to tip someone off that there are difficulties in my life. Most people are very kind to me as a result. It occurs to me that not everyone’s crisis is so obvious. You never know the battles one is fighting, we should be kind to each other, always.

Our friend, told us about a book that shows two potential paths in one’s life – a path of resentment or one of gratitude. Resentment is easier. When you have cancer for no good reason – a rare and random one at that – you feel betrayed by your body. Then you enter this really grueling course of treatment that takes over your life, makes you unimaginably sick and imparts excruciating pain. Resentment of your body, your circumstance, and even God is the easier of the two feelings.

A few weeks ago, I had an ultrasound of my heart at MSKCC in NYC. I was not feeling great, having just finished day five of HD MTX. It was the end of the day, and I was ready to go home. I flopped myself on the table in the darkened room looking more for a nap than a view of my heart. When the Ultrasound Tech began positioning me in supernaturally uncomfortable poses for the best view of my heart, I knew a nap was not in my immediate future. Making the best of it, I watched the screen. When I saw my heart in full, living color working really hard in spite of how I felt, in spite of the chemo that kills cancer and potentially damages said heart, and most of all in spite of knowing I have cancer – and feeling like my body has betrayed me because of that fact, I was in awe. The ultrasound tech in his very thick NYC Brooklyn/Italian accent said, “You have a beautiful heart, ‘aint nothin' wrong with that baby.” I almost cried. I thanked him, thanked God and thanked my body. It has been through a lot, but it keeps fighting. And so do I. With gratitude.