The Stress Doc turns to a guest contributor who poignantly and powerfully shares her struggle to get the medical system in sync with her medical, psychological and spiritual needs. She shares hard-earned wisdom about being your best patient and how, when battling with cancer, the challenges and misconceptions never cease.
"I'm Not Sick...I Just Have Cancer!"
"You don't look Mexican..."
"You don't look sick..."
"You don't look old enough..."
Ever been pigeonholed by a comment, well meaning though it may be, that just makes you wonder WHAT your response should be? Ever been thrown by life into a totally different frame of reference at a very gut-personal level that makes you wonder WHAT your response should be? Ever had both happen at once???
In 1994 I was happy, working hard, enjoying life in a beautiful location, fat, dumb and happy as they say. As my daughter used to say..."__it happens." THEY stopped being nice to me.
I was diagnosed with Non Hodgkins Lymphoma. Back up.
Prior to that, for at least three years, I had noticed unusual symptoms that I reported to my doctor. I had chosen a female doctor because, being female, I thought I would have a better rapport with a lady-doc. I told her that I was feeling different, and explained the symptoms. She made superficial comments about my concerns, in essence, getting her off the hook for examining me more thoroughly - and kinda making me feel that maybe I was being too vigilant. I drifted for three years, having annual physicals, thinking that if I exercised more, ate better, slept better, I might be feeling more rested, and would regain my old vigor. Finally, a weird lump appeared that had no explanation. I went to her and again she felt the lump behind my ear, but paid it no import. She felt my other nodal areas in my neck - she didn't notice anything irregular. I felt uncomfortable, but couldn't get a rise out of her, so went home again, but this time with a distinct feeling of unease. After a few weeks, a distinct tenderness was accompanying the lump behind my ear, and I knew it was larger. After one night of particular discomfort I awoke with blood in my eye. This is it I decided! Something in me, almost unconsciously, was saying GO FOR IT! I called her office and told the receptionist that I was coming in. I was feeling uncomfortable and I demanded an explanation. Of course, she couldn't refuse me, I didn't LET her, and I burned rubber over to the doctor's office. She wasn't in. Another doctor saw me instead. That doctor told me that I did have a lump, and a consult with an ENT was scheduled.
The demeanor of the ENT doctor told me that something was really amiss. I lived in SE Alaska where specialists are not ample, so I was told to go to Seattle immediately for a consult with another specialist. Still feeling vaguely anxious, I plowed ahead for Seattle where a minor surgery removed the lump. I was told it "looked good, looked clean". I went home relieved, and got back to work.
Three weeks later, as I observed the contractors working the final touches on a beautiful wooden floor that was a much needed addition to our home, the phone rang. We had been very accommodating with our contractor, as he was a friend, and his young partner's wife had just died from cancer, leaving two young children. The addition had progressed slowly, but we weren't in a huge rush, and figured it would work out well at any rate.
I answered the phone, and it was a doctor from Seattle. It wasn't my surgeon; it was an assistant. He told me he had some bad news for me. I started shaking so that I had to sit down on the bed and steady my arm with the other hand to keep the phone steady. I KNEW. He told me I had cancer; he told me the type. I asked him to hold while I got a pen, and I wrote down the type of cancer, asked him for the type of cells, and several other things without even being aware of what I was doing. He gave me that information, but that was it.
I asked him again...that's it? WHAT DO I DO NOW?
He couldn't tell me anything more. I'm in a remote location, no Oncology specialists in town, and I'm being called long distance by a stranger to be told I have cancer, and THAT'S IT??? I laughed...like, being a smart-ass-bar-none by instinct, the irony of my situation beginning to dawn - duh...that's it? I'm also home alone except that I suppose I could go downstairs and ask my friend whose wife just died WHAT THE HELL DO I DO NOW???
I finally began to burn rubber mentally... Gave him a small, but swelling piece of my mind. Don't you DARE hang up on me doc, and SPELL your name for me, THEN tell me who I call for some information. He limply told me that he thought I could probably call their cancer clinic for info. Gee, thanks, doc, you've been swell!
Okay... Call work... Tell them you're not going to make it in this afternoon after all, oh, and by the way, you have cancer -- yuh...do that. When my call was answered at work by my friend who was the Human Resources Manager, I somehow felt hysterical, but calm... At the same time... Told her that I had received THE call. Told her I was scared pretty much AS MUCH AS I COULD BE, or words to that effect. No, my husband wasn't around -- he was off giving a seminar at the university...
In retrospect I now realize that this was the beginning of two very important processes in my life. I was beginning to fight, and I was beginning to ask for and receive the help of my family and friends that has sustained me throughout my battles.
From work, the Human Resources Manager located my husband, and cut his seminar short by telling him he had to go home immediately. She and another of my good friends came to my home to stay with me until my husband arrived.
During the interim I called Seattle... Again, strangely calm, and got the cancer referral info I needed. I went downstairs and told my friend that I had received bad news, and he simply held my hand and watched me cry. He knew what I was feeling. He had been so supportive of his partner's family through their grief. I knew he, better than anyone, felt what I was feeling at that moment.
Now began the battle. I had an unseen accomplice. I've always had a pretty supportive belief in my spiritual home, but I finally had to begin putting all my trust in God's lap. I couldn't do this myself. I had to stop being in the front seat and agree to let God lead me through this. That means that I had to stop being proud and acknowledge that I needed all the help I could get. I had to let my family start taking care of me, and I had to start educating my friends and co-workers. After the diagnosis, a period of time passed before I started treatment in Seattle. I have a slow growing cancer, and what if any treatment to get treatment all were decisions still to be made. Co-workers avoided me, or hung around my office asking questions until I felt I never would get work done. So I went on the offensive, and agreed with my boss that an e-mail to the department would work best by giving all the info people wanted. I was kinda the "den-momma" to the department, so my illness triggered a lot of questions. People responded very positively to this method, and I have many times over thanked my boss for being so supportive in so many ways.
I went to Seattle for consults. That process gave me not only the information I needed about cancer, in general, but it gave me a really complete understanding of the fact that when one has a chronic illness: one has to be prepared to go the gamut of medical politics; be prepared for diverse offerings, as palliative, and cure is offered. And certainly, be informed that the medical world in general does not offer support in all quarters.
I fired my home physician and sought another with the referrals from friends and other physicians being my guide. I found that having a female family physician is still important to me, but not all physicians, obviously, are competent. I wanted as my criteria, expertise in their profession, and also a willingness to listen to me as an individual. In Oncology, expressly, I wanted a specialist that was willing to treat my needs as important. The incidence of cancers today is overwhelming, and I am sympathetic to the sheer demands of that profession. I still know from experience, that the specialists that treated me as their most important patient gave me the peace of mind and support that led to my body being better armed to heal itself. I found that I became quite demanding in that regard. I was very outspoken with those physicians that disregarded my emotional need to have trust. I also insisted on their respect for me as a healer. Gone are the times I wordlessly accepted treatment; no more am I tolerant of physicians disregarding my fears, or pain; no more do I accept without question my symptoms, since I know best what's happening in my skin at any time. In this same vein...I do always make sure I thank those that make their best efforts to be humanistic in their approach to healing. I appreciate the efforts made toward me when patient loads are heavy. I feel so much more secure even with frightening treatment when I am being respected at all levels. I seek physicians that are not threatened by my using western and eastern medicine toward optimum health. I openly use counseling when I need it to make me stronger. I encourage my family members to do likewise. I thank God for my hugely supportive spouse.
Last Thanksgiving, just as I thought I could let some of these happenings recede into the more background parts of my mind, I ended up with another major medical emergency. I was dumbfounded initially - absolutely shocked that something very serious could happen again so soon after my last battle, but here it was. Staring me in the face, it was daring me to survive again. What balls! "They" sure aren't being very nice to me, are they? I dreaded handling it. I really did dread having to go through the process. I didn't have much time, or choice in the matter this time. I did have a "headstart" on the process this time, since my head was more well screwed on this time around. I told my doctors that they'd have a lesser time to mess around with medication, since I was a very atypical case. I gave them three months to medicate me, and then knew, and told them, that I'd be off to another place for consult if it didn't work satisfactorily. On the road to spend time with friends at holiday I became very ill and ended up being medi-vac'ed to the nearest large city for treatment. I was told that my original diagnosis was not correct, and that treatment for my condition was possible. This time I didn't blink an eye. I had a high level of confidence in these doctors, since they passed my litmus test answering all my questions with all the big guns available; they were compassionate; they gave me all the time I needed to ask questions, to express my fears, and to just be human; they showed my all the comparisons of treatments available, and all those involved in consulting made themselves available at once to arrive at a decision with my husband and I as part of the healing team. My pastor later told me that God wanted me to be in that place at that particular time so that I could have the appropriate medical help available to heal me, and I think so too. I dreaded surgery, since it was a major one, but I felt really -- calm again. Had no doubt that the onerous process I was to withstand (I had no doubt that I'd make it) would heal me. I knew the process of trusting God, trusting myself to be inquisitive and demanding in my needs, would get me through this round. I'm so much better now. I have so much confidence in my varying healing teams, in myself, in my spiritual home, in my family, in my friends. I'm over my latest big medical crisis. I'm training myself to stay healthy by living a healthy lifestyle. I still have Non Hodgkins Lymphoma. People still say "but you look so well"! I don't bristle anymore. I tell them..."I'm not SICK...I just have cancer". There is a difference.
This lady knows how to... Practice Safe Stress!
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