Latest and Greatest

16683822_1420299011335475_2380552863151578494_nAfter the last admission on January 17th, a lot has occurred. Thankfully I get to say, some in my favor. The news is mixed and full of silver linings from my perspective. Dr. Condon is amazing, and I am so grateful to have him caring for me now. He has gotten the pain under control better than it has been in 3 years. Unfortunate the blocks are only lasting a couple of weeks, so repeating them every three weeks seemed right. I had a rather strong reaction to the steroids contained in the blocks. The blocks are a mixture of medications, some long acting, and others short acting, a small dose of steroids increases the length of time the block can work. For me, that meant a heart rate of 155, and a host of other side effects, all manage with Benadryl. I was in constant contact with the nursing staff, every hour on the hour until all were satisfied the reaction was over, and I was not at risk.

With them only working a short time and the risk of the side effects it is time to consider something else. In this case, RFA (Radio Frequency Ablation) It is minimally invasive however it is more extreme than a nerve block. Individual nerve centers that run through the intercostal spaces are targeted, and a probe is inserted into a needle and heated. That heat burns the nerves in a way killing them for about three months, in some cases longer. There are risks, and we can’t do a full ablation on me. Unfortunately with the weaken of my abdominal wall I have a small hernia, the odds of that becoming worse or a more risky issue with my intestines keeping my abdominal wall integrity where it is now, is vital. I never got back any of what I lost from the first surgery.

RFA will help keep my pain levels in check. Unfortunately, it will not assist the tightness of the muscles at all. The muscles are in constant spasm, I have grown accustomed to their discomfort and at times painful. With that, we can only continue to try different medications in hopes of hitting the right combo to get it to loosen up.

It means that I am great at home, for the most part, there are times a simple trip to the bathroom and back gets me short of breath and gets my heart rate up around 120ish. I recover by laying down and waiting it out, and or using the oxygen and medications. Until science catches up with me, there is no cure. There is one surgery that might help but it will cost, so it is on the back burner as they say. Even then it will only help with pain and hope to help with the tightness by reducing the pain. It’s all a gamble; it could work 100%, 50%, or not at all.

Everything the doctors try is uncharted territory. Here I have the head of pain care in the state saying he has never had a patient with muscles this tight. He sees why every day is a stay in bed day, and how any engagement of my core creates elevations in my heart rate and work of breathing. We are at a medical end point of running out of ideas. At least the ideas can be repeated, and that will help.

I can not explain what it is like to be in pain every moment of every day; it is sad to say you get used to it, but you do, however; there are parts no matter what you never get used too, all the needles for one. That gets harder because you know what happens with it, and there is no way to get out of the additional pain. With changes to my diet, adding meditation changes, and modified yoga helps keep my mental sanity in check.

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One significant change, stressors, anything that caused my heart rate to get to high has been cut out of my life, and yes that includes people. There are those that are so toxic they can cause issues, and that is not worth it. That has never been made more clear to me than the last admission and the events of that day which are burned into my memory forever, the worst of which was the unexpected death of a friend and mentor. Nothing is worth risking shortening life or making things worse then they are. Another sick joke I started on my own, I have more medical gear than my grandma, she turned 89 yesterday :-) I”m “Her Jennifer” as she says and proud to be.

I have my new drum circle I love to death and hate missing, still thinking about saying come on over here a night so we can do it more often, and I wonder if there wouldn’t be some who would love it. What is sweet is Matt, my twin soul wants to, and my best friend David likes it too. How cool it is that our home is all in together and we bring it back with us. That has been life changing. They are an amazing group of people, being in their presence alone has a strong warm and calming effect on your physical body and mind. I never knew it could feel that good, but it does. There was a time I would have called that hoaky, and now I see how life-affirming and healing it can be especially in the face of a limited life. Physical limitations don’t stop what can be done; it just changes how you can do it :-)

That might sound sad, but it’s not. Things use to be a lot worse; the pain would land me on the floor, it would take no less than 5 hours to get it to tame down enough for me to breathe. Now we have better pain control; I wish I had the ability to do more. I can say I know what it feels like to get that look from someone as if to say; you don’t look sick. While you use a cane, walker, or maybe the electric scooter at the store. Those are the critics to ignore, and I highly doubt they would last a day in my shoes.

People like me develop pain control skills that are insanely right. My number 4 would probably be a healthy person 8. I have learned to control how pain affects me, most of the time. I admit to having times when it makes me bitchy. Plan and simple, bitchy. However, that simply just is, and no one around me gets upset, they just redirect my thoughts and are there for me. Matt is always on my side; I never have to walk alone.

I also have a small group of about 200 women who are just like me. From around the world, but we all suffer from the after effects of cancer surgery. They got cancer, but the damage left behind to great to continue life as we knew it, before cancer. It has become a joke to say BC or AC, before or after cancer as in the way we calculate time in years; we mark moments in our lives. Points where life is changed not by disease, the patient, or even by choice, it simply is. At best imagine wearing armor or undergarments made completely out of iron. Wrapped around you all the way, just there preventing expansion of your lungs and diaphragm, condensing the space in which our hearts live, pressing down on our stomachs and intestines causing silent GERD, GERD, and other issues like obstructions of the bowels. All painful, all mean additional treatment. It is a domino effect that some cancer patients face. It is hard to walk away when treatment continues month after month, week after week, with no cure yet and no end in sight.

Then there are the most important things to remember. We are still here and so many we have grown to love are not. We lose a lot of friends on this trip, and no death is easy to take. We feel everyone of them. We fight on in their names and hope to see a cure; we offer ourselves up to study sometimes even begging them to please review us. The problem is, there is not enough attention on what is wrong with us, and some studies that are out there only show the same results. That we are undertreated, underdiagnosed, and without much hope for a cure, we can only keep our voices out there hoping someone takes notice and helps. I know of one person who went back to school and is working for their masters to be then able to run a study on post mastectomy syndrome.

You can find more information at hope4pmps.org this site covers one aspect of what is wrong with me, but a significant issue that has taken career after career and quality of life by countless others both male and female breast cancer survivors.

We have no champion, no superstar out there fighting for more research dollars and better care, we are alone in this battle and helpless at times. We as patients who found each other, find ourselves looking out for others to bring them into the group, and give them the sanity we have in the comfort of all the science, data, and people we are connected to that see this and wish they had the cure too.
jetti better

Posted in MY BLOG.

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