Treating All Of Me- my breast cancer and more

by Debbie Twomey on March 30, 2017

                                                                                                        

I want the holistic approach to treating my breast cancer. I do not believe treating only part of a person is enough to effectively be healthy. Holistic treatment is an inclusive way of treating illness as a whole person not just the disease.

Ho·lis·tic-characterized by comprehension of the parts of something as intimately interconnected and explicable only by reference to the whole. It is characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the physical symptoms of a disease

 

I am patiently waiting for the lab results from my lumpectomy so I thought I would blog about something I think is very important. Some of us discover we have cancer and proceed from there. We get a second opinion, we might have more lab tests done as well as X-rays and biopsies all designed to help us make a well informed decision about our course of action.

Your doctor offers their suggestions but ultimately it is our decision to make and we better understand as much as possible before we make it. In the Breast Cancer (Treatment Handbook) by Judy C Kneece, she suggests becoming informed but do not overload yourself with so much information that you cannot process it or even decide what might be best.

It lightens the burden if you trust your doctor and feel you are in competent hands. A measure of comfort is good too but some doctors are so professional they do not really establish a personal relationship with their patients. I am not comfortable with that, I am too personable to find relief with someone who is distant and maybe even a bit cold. But others may find that type of care perfect. If I feel my doctor is not listening to me or doesn't even take a moment to know personally who I might be, I am just not a good fit for that doctor and vice versa.

I am a realist. I want to know as much as I can about what I am facing and the many options. I do not like to be treated as if I would not understand or that I am just one of a million women who face disfigurement or even losing their breasts. This is a very personal battle and if I were made to feel as though I were on an assembly line, I would have to look for a new doctor.

I also believe in the holistic approach. I know I have a responsibility to take better care of myself, to eat properly and get as much exercise as I can tolerate right now and to follow doctor’s advice. I have another grave concern though. Yes, I am worried about the cancer and how the treatments will affect me and most of all, did we get it all. But, I am not just dealing with cancer right now; I have a myriad of health issues that play a crucial role in my decisions and treatment plan. And I have noticed that because I have so many different specialists, there is a lack of communication between them right now. I try my best to be sure to include all information relevant to what crisis I am facing but I am also not as on top of things as I used to be as a result of these illnesses. So I always sign the consent forms for each of my doctors to share information about why they are treating me and my diagnosis. I still see such a disparity in what each one is aware of other than what I personally share. I think that should be different.

In treating any disease you are treating the WHOLE person. That means if they have diabetes or COPD these illnesses need to be taken into consideration. We all get asked the same formula questions at each visit, what meds are you taking, are you up on you immunizations, and they do vitals. But I have seen some of the obstacles that I am facing are missing from the treatment plans.

I got a call from my general physician after I requested blood tests. I wanted Diabetes removed from my diagnosis because I knew it had been steroid induced and I had not had to use insulin in 6 months. So I had a complete workup at my request.

Here is what my tests indicated: COPD, Cancer, autoimmune disease, anemia and Rheumatoid Arthritis. So I am thinking well, the tests were pretty thorough and showed my sugar levels were fine as were my liver (I have Fatty Liver Disease) and cholesterol. Great, that is something my treatment plan should include. Except both doctors did not really know about the other and there is where I wonder why. I get a call saying I need to see a hematology oncologist. So I say I can but after my lumpectomy scheduled for that week. And that is when I discovered my doctor had no idea I was diagnosed with cancer. I guess you could say why should she is not the treating physician? But shouldn't she?

Here is where I think there is a huge inconsistency. Yes, I am responsible for the information my doctors’ share but I sign the waivers and give names and numbers for my other doctors because I know I am not just facing cancer right now. But, it is my head that is kind of fuzzy so I am not sure anyone should be depending on me alone, ya know? My treatment includes all aspects of me, my other health issues, my diet and exercise, my support system, my mental abilities, even the home I live in—every part of whatever influences or touches my life. Now do I think each doctor understands this, no I do not. I see many of them treat their specialty and ignore other influences on my health.

One very important one is my insomnia. Many are aware of it, a few have tested and determined how to combat though no remedies have changed this for me. I have mild sleep apnea but it is not really the reason I do not sleep. I have to sleep at an upward angle, almost sitting up because of my Pulmonary Fibrosis and it took me months of experimenting to find just the right position to be comfortable. Another reason for the insomnia is my Rheumatoid Arthritis (RA). I have 9 pillows in my bed, each with a specific function. My legs and ankles cannot touch so I have a big pillow between my legs. I have the back ones that keep me upright and a neck pillow to help with the cervical pain at night. I have a body pillow I hug which just helps relieve some of the pressure on my joints. So you can imagine the routine I go through just to get comfortable for sleep. Then add a breast that is now painful from surgery and it can be almost impossible to get into a comfortable position.

                                                          

The sleep issue has gone on now for over 2 years. There were some nights I never got one minute of sleep and others where 2 hours at one time was heaven. I average about 4 hours of sleep and almost 2 of them are after my little one goes to school. I have tried everything and anything. I just believe I do not get enough oxygen to get deep sleep and of course it is the one point of contention I have had with my insurance company. My pulmonologist suggested an oxygen tank and a year later I am still waiting. When I was in the hospital with pneumonia last year the nurses could not believe how little sleep I actually get and I did have the oxygen but also had quite a bit of hardening in my lungs at the time. I think now it could make a major difference in how much sleep I actually get.

The reason I mention the insomnia is because insomnia is affecting my treatment.  We need sleep to heal, good solid sleep which is what I lack. And the lack of sleep affects me physically in so many ways. I am bone tired between the PF and RA and then so little sleep I am always too tired for much activity, let alone allowing my body to heal properly from surgery. A 15 minute drive to my doctor’s office is finding me with my eyes drooping and me fighting to stay awake on even that short of a drive. I cannot even go visit my youngest granddaughter an hour away because I know I will be too tired to drive home and fighting to keep my eyes open is just an accident waiting to happen.

I believe all components of my health and healing depend on addressing me totally. And that all the doctors involved in your current treatment agenda need to be aware of one another. And to include who I am personally in how they go forward. To that end we need to be our own best advocates and speak up. Your body, your healthy, your recovery, be active in it.

Live Laugh and Love

Debbie                                                 final

 

 

 

{ 2 comments… read them below or add one }

Ellen Barbagallo March 31, 2017 at 2:11 pm

Hey Deb that is a wonderful blog with so much information as to what you have to go through every day.  People do not realize until it happens to them exactly what people go through with certain medical conditions.  Your information will help many people I am sure.  You stay strong, there are many people willing to help you as much as they can.   I love you and will always be here for you❤  Your BFF

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Amy April 1, 2017 at 10:41 am

Hi deb, this was a wonderful read. I hope more people take the time to read this. You are courageous and such a beautiful person. You have done a lot for so many. Always so giving. So I hope people give back by listening to your story, following and sharing. We all have something to learn here. You are always in my thoughts and prayers. 

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