Sucking lemons

Kali and Bella are not impressed with the ER doctor’s compression bandage on my neck. I call it my hijab.

I have sure been having second thoughts lately about publicly revealing so much about what’s going on with my health.  It was  pretty easy to write and blog when my health was improving and things were looking up.  It is much more difficult to be open and honest when life seems to be taking turns in the other direction.

For one thing, I don’t want to have to deal with well intentioned friends and acquaintances second guessing my every decision and choice.  If only I hadn’t had that biopsy I wrote about last week done Thursday, for example.  It’s not like I wasn’t warned or anything.

One trusted consultant informed me that a surgical biopsy might help spread potentially malignant cells.  The surgeon assured me she wasn’t going to be invasive enough to risk that happening.  The ENT specialist told me that without tissue samples, there was no way to positively determine which of more than 30 kinds of lymphatic cancer I might have, and therefore no way of knowing how best to treat it.  To those proposing alternative approaches, such as high-dose intravenous vitamin C, it doesn’t seem to matter as much about what kind of cancer is being treated.  Cancer is cancer, plain and simple.

For me, the patient, it’s all still quite confusing and befuddling.  I’ve spent more than the last two decades trying to understand the mysteries and contradictions of AIDS, and now I discover the learning curve for cancer must surely be as sharp.

The incision behind my ear is much larger than I expected it would be.

So, about that biopsy Thursday.  I was under the impression that the surgeon would make as small an incision as possible and that she would remove only a small piece of flesh for the folks with the microscopes to examine.  I had definitely ruled out giving her permission to remove the entire parotid gland under any circumstances.  I didn’t want to risk damage to the facial nerve on the right side of my face when I haven’t yet completely recovered from the Bell’s palsy damage to that same nerve on the left side.

I haven’t even talked to the ENT specialist since the surgery, but she did talk to Michael.  As best as I can decipher, she told him they didn’t find the benign cysts they expected, and what they did find “didn’t look good”. She apparently told him that they suspected cancer, but Michael hasn’t yet been able to even verbalize that word.

It was during visits with the resident physicians who inspected me the following morning that I learned the surgeon had removed lymph tissue (as opposed to any cystic tissue) that had to be sent elsewhere for a complete lymphoma panel to determine whether I have lymphatic cancer, and if so, what type.  Hodgkins or non-Hodgkins.  If the latter, which of the 35 different sub-types?  Are the presumed cancerous cells B- T- or NK lymphocytes?

Hell, I don’t even know with 100% certainty yet that I have cancer, but all the doctors seem to be presuming I do and I feel obliged to assume the worst and be prepared to do a happy jig if this all proves to be a false alarm.  Despite not having an official diagnosis I am trying to be prepared for that possibility.  I have questions that cannot yet be answered.  Will an oncologist recommend chemo, radiation, surgery or a combination of the above?  Will I be able to find medical providers and doctors that will support me if I want to try natural and alternative treatments first?  How can I afford the IV therapy, which insurance will not cover?  How can I afford not to try?

The first day following the biopsy did not go well.  Two weeks before the surgery I had been given an information sheet about what to expect with any surgery involving the parotid gland, so I knew about the need for a drain tube in the closed incision.  At some point following surgery and while I was still in the hospital, the drain tube became blocked, so instead of collecting in the attached bulb, fluid from the surgical site had been draining into the pillow behind my head.  Because the nurses caring for me would throw out the wet pillows, I was on the third, relatively dry pillow when the residents examined me the next morning. Gorked up on morphine and Vicodin, I didn’t think to tell them the obvious and they assumed the lack of fluid in the collection bulb meant it was safe to remove the drain and send me home.

The fluid continued to drain down my neck as I was leaving the hospital, but I was told to just change the gauze.  Eventually the drain hole healed shut and fluid began to collect under the skin, stretching the recently closed incision.  Several hours later, the side of my face was swelling until I could feel pressure on my throat and ear canal.  We returned to the emergency room of one of the busiest hospitals in the city at 11 pm, on a Friday night, two days before a full moon.  After competing with gunshot victims and vomiting babies, the ER doctor had me scheduled for a CT scan, and I was anticipating additional surgery to replace the drain.

The side of my neck is swelling because the surgical drain was removed too soon.

The on-call ENT was not impressed with his 3 am wakeup call, but he seemed almost nonchalant as he confidently probed the swelling side of my face.  After some searching of the ER exam room he found a large syringe with a small, fine needle and drew out what looked like a couple of ounces of nasty looking brown lymph fluid.  The needle prick was about as uncomfortable as a mosquito bite.  The compression wrap he applied to control further swelling reminded me of a hijab.  The relief was immediate. I was told that I may need to have more fluid drawn off again in a day or two, but there was no reason to risk additional surgery.  Even more relief.

I won’t know the results of the lymphoma panel for 10 days, but I don’t dare wait to take some preventative measures.  It’s too late now to wonder if allowing the doctors to cut me open was a mistake.  If there is cancer, the procedure may have increased the risk of spreading those cells to other areas of my body.

It has taken me more hours and days than I wish to overcome my own doubts and uncertainties about following what I consider to be a daunting course of nutritional therapy to try to stop the cancer… naturally.  I have Jonathan Campbell’s guide Stopping Cancer Naturally at hand now and I will be ordering the recommended supplements to be overnighted before Thanksgiving.

I’m not ruling out any options at this early stage of the game, but I’m also not going to wait to be told what to do next.  After an encouragingly brief period of discouragement and depression, I am finding the will to mount another battle.

Cancer would explain the fatigue I’ve been experiencing most of this summer.  I must confess that I am feeling very weary and I am tired of having to ‘fight’ for any semblance of health.  I hate using words like battle and fight, but I don’t know of better ones to use right now.  After 12 years of dealing with a poz diagnosis, I do not have the same level of enthusiasm as I had when I quit the ARVs more than seven years ago; nor the energy I had when I quit all pharma drugs in 2007.  But I’m not ready to give up living yet either, and I really, really do not want to endure everything that goes along with conventional cancer treatments like chemo and radiation.

I will continue to write and share when and as I feel like it, but I reserve the right to choose to withdraw for a bit of time to myself as well.  I am trying to remember when my life took such a sudden turn from being introverted and withdrawn to becoming such an exhibitionist.