Tag Archives: cancer

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Caregiver Syndrome, Part II

December 18 of 2014, we got the official diagnosis of my husband’s Stage IV cancer…not what I wanted for Christmas. In the past 11 months, he has had 118 doctor appointments. He is cancer free at this moment. Just three weeks after he completed 35 radiation treatments and 7 rounds of chemo, he suffered an abdominal aneurysm–and survived. The majority of people who have an aneurysm die. He was fortunate to be airlifted to the hospital, and the vascular surgeon was standing on the landing pad when he got there. He has had the best of care. Although he has lost 40 pounds that he didn’t need to lose, has a bad case of chemo brain fog, and says he has about 65% of the energy he used to have, he is just lucky to be here, and I’m lucky to still have him.

This has been one of the most emotional times of my life. Fear, shock, anger, denial, worry, and every other negative emotion has been my companion for the past year. There have been a lot of highlights, mainly from the outpouring of love, concern, and support we have had from friends and family and even total strangers. I often think of our lives in terms of B.C.–Before Cancer.

I didn’t know there was any such thing as Caregiver Syndrome before I became a caregiver. Even though he is well at this time, I’ve still got the syndrome. I still worry. I cringe when I go to the mailbox because I know I’m going to find another medical bill that I don’t know how we’re going to pay. I’ve spent the past year fighting battle after battle with our insurance company, filing appeals, and begging them not to deny payment for services and to extend continuity of care after they dropped the Carolinas Health Care System from their network. 6 of the 8 doctors that have been involved in Champ’s care were members of that system. It has been a nightmare.

I’m a control freak, and I hate it when something is beyond my control. His health is beyond my control. Our finances, at this moment, are beyond my control. We will go to our grave thousands of dollars in debt from this experience. I have felt like I’m personally out of control. I’ve never been a crying person, and in the past year have probably shed more tears than I’ve shed all together in my entire life.

Some good things have happened, in spite of it all. We made the decision to downsize at THERA-SSAGE–not close the business–and Champ has been able to start doing massage appointments again. He had to retire from carpentry after 45 years, as the physical labor of it is just too much for him. He still sleeps a lot. Some days he goes from the bed to the sofa and back again, and that’s it. That’s okay. Sleep is restorative. I accepted a new job as the Massage Division Director of Soothing Touch, an international family-owned company that manufactures massage and skin care products. They’re based in New Mexico, but I get to work at home, and I am traveling a lot for them. I love the products, which I had been using for about 7 years before joining the company, and I love the people I work with. I curtailed a lot of my teaching activities this year, but I managed to do three book revisions while Champ was sick…many times I took my laptop to the hospital and worked on them while he was receiving his treatment. Where there’s a will, there’s a way. I hired an office manager to run our clinic so I could bow out and focus my attention on the new job. I have been teaching professional ethics for many years, and I was inspired to create a new class on The Ethics of Working with People with Cancer.

I have a new appreciation for cancer patients, and for their caregivers. One of my friends who beat breast cancer a long time ago said to me that she figured out while she was sick that she would much rather be the sick person than the family members who were caring for her.

When you’re a caregiver, you put everything else on the back burner. I know I did. I stopped getting regular massage. I got depressed. I suffered from anxiety. I alternated between stress eating and not eating at all because I was stressed. I either wanted to cover up my head and sleep, or laid awake worrying. It’s been a journey, and it’s not over. Champ will receive PET scans every three months for the next five years. He will have the camera put down his throat every six weeks for another six months. He goes to have his chemo port flushed out every month. He sees the vascular surgeon for regular ultrasounds. He has appointments just to get weighed so they can make sure he is at least maintaining and not losing any more weight. It’s still a little shocking to me to see his changed appearance, but I’ll take him skinny rather than not having him at all.

Every time I hear of another person who has been diagnosed with cancer, I just cringe…for them, and for their loved ones. All you can do is the best you can do. I just keep putting one foot in front of the other and hoping he stays well and continues to get his energy back, and that the brain fog lifts. I still have moments of fear, depression, anger, and the whole gamut, but those are outweighed by the gratitude of still having my husband. If you’re going through this, or have already been through it, you know what I mean. May peace be with you.

To every thing there is a season…

…and a time to every purpose under the heaven: (Ecclesiastes 3:1).

As Autumn approaches (and not a minute too soon for me, personally, North Carolina on those humid 100-degree days is not my favorite thing), I am reflecting back on all that has happened since this time last year. It will be a year ago in September that I got very sick with double pneumonia (just a year after my first bout with it), a urinary tract infection that went systemic into my bloodstream, and a diseased gall bladder. Last November, just as I was recovering from that, my soulmate and husband was diagnosed with Stage IV cancer. Let’s just say it was the winter of my discontent, and my distress, and my depression, and that’s putting it mildly. Spring rolled around and my life was consumed with doctor visits, constant battles with the insurance company, physically taking care of Champ while trying to keep my business running smoothly. Add that to the mundane chores of everyday living, like keeping the housekeeping and the laundry and the grocery shopping all done and the bills paid. While he was recovering from the cancer and the sheer exhaustion from treatments he underwent, he suffered an abdominal aneurysm. I was overwhelmed emotionally and physically and financially and every other way, suffering from fear and anxiety attacks and paranoid if I got so much as a sniffle, because I just couldn’t be sick while Champ was in the condition he was in. I had to cancel several trips, including my annual trip to Ireland to teach, and let go of a lot of things that just paled in importance.

None of us know the day or the hour that catastrophe might strike, and that some life-altering illness or other tragic event will take place. And we don’t know the why. Some believe that everything happens for a reason; some believe things happen without any rhyme or reason. It’s easiest, and human nature, to think that things happen to other people for a reason, but there’s no reason for it to happen to us. Bad things happen to good people, and good things happen to bad people all the time. We have lost several good friends to cancer this year. I see people on my FB pages fighting that battle every day. I feel for them, and their caregivers, too.

Some great things have happened this summer. First and foremost, Champ was pronounced cancer-free. He still has to see the oncologist every three months for the next five years, but he’s getting better every day at the present time. He just eased himself back into doing massage for the first time since last November when he was diagnosed, and he had seven appointments this past week. I accepted a new full-time job with Soothing Touch as their Massage Division Director. That necessitated my hiring someone to run THERA-SSAGE, our chiropractic and massage clinic in Rutherfordton NC, something it was hard for my control-freak self to turn over to someone else, but it seems to be going well. I’m loving my new job and the great people that own and work for this company. I’ll be meeting those I haven’t met yet this week when I make my first trip out to the factory in New Mexico.

My new book is finished and will be released in October. I finished another manuscript, this one for the 3rd edition of the Plain & Simple Guide to Therapeutic Massage & Bodywork Examinations, and the publisher accepted the first draft. It will be out at the beginning of the year. We enjoyed our trip up to Indiana for the World Massage Festival, and also visiting with AMTA folks during weekends I was teaching in Greensboro and down on the NC Coast. I’ll be attending the National Convention in Pittsburgh to represent Soothing Touch. I’m participating in a new CE distance learning project with some other great educators that will be rolling out any day. While I was at the World Massage Festival, I got invited to teach a class in Trinidad next year, so I’m looking forward to that. I also got invited to speak at the 2016 Society for Oncology Massage gathering. Even Champ’s cancer had a few silver linings. We have always appreciated each other, but now we appreciate each other even more. We also appreciate all the kindnesses of family and friends and total strangers who supported us along the way, whether in thought or in deed.

I don’t know what the purpose was in all the stuff that happened to us, but I do know the lesson. and that’s just to hold on with everything you have to the time with loved ones you have, because no amount of money will buy any more of it. And now, for the rest of the verse. Peace & Prosperity to you.

To every thing there is a season, and a time to every purpose under the heaven:

A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

A time to kill, and a time to heal; a time to break down, and a time to build up;

A time to weep, and a time to laugh; a time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

A time to get, and a time to lose; a time to keep, and a time to cast away;

A time to rend, and a time to sew; a time to keep silence, and a time to speak;

A time to love, and a time to hate; a time of war, and a time of peace.

Caregiver Syndrome

My husband was diagnosed with Stage IV cancer a few months ago. Last Friday, he had the last of his 35 radiation treatments. Two days ago, he had the last of 6 chemotherapy treatments.

A few moments ago, I Googled “caregiver syndrome.” I wasn’t sure whether or not that actually existed, but I figured I was suffering from it if it did. It does, and I am. According to CNN, the symptoms are depression, anxiety, anger, and declining health. Let’s throw in exhaustion and fear while we’re at it.  While this condition is also referred to caregiver burnout, it didn’t take me any time at all to get burned out. Except for the exhaustion, it was all there for me as soon as I heard the word “cancer” and my husband’s name in the same breath. Within just a few weeks of starting to navigate the cancer maze, exhaustion did in fact set in, and I haven’t had time to get over it yet. It will be three months before the next PET scan to see if the cancer is really gone.  I don’t think my depression, anxiety, and anger are going to magically disappear in the next day or two.

As for my own declining health, I have been suffering greatly from A Knot in the Pit of My Stomach. I don’t think that’s an actual medical condition, but it’s been real to me, accompanied by chronic diarrhea, and by chronic I mean a dozen times a day, with intermittent bouts of nausea when Fear Takes Over. I diagnosed myself with Irritable Bowel Syndrome, although I tried to jokingly think of it as Scared Shitless Syndrome. There’s nothing like hearing that the love of your life is seriously ill and knowing that he might die.

Yes, it made me depressed, anxious, and angry. I am not the crying type. I have gone years at a time without crying over anything, but in the past few months, I’ve probably shed more tears than I have in the rest of my life all put together. I’ve been angry…angry that Champ had cancer, and angry at the insurance company for jacking us around, and angry that people who are already under stress have to have the added stress of dealing with them.

I’ve been paranoid that he wouldn’t get well. I’ve been paranoid that we wouldn’t have enough money to survive the experience. I’ve been paranoid at little things. For instance, naps. For our whole life together, my husband would often come home from work, sit down in his recliner, and take a nap. It was just his habit. But after he was diagnosed, if I came home and he was taking a nap, in my head I would be going “Oh my god, he’s taking a nap! Is he sick? Is he okay? Is he breathing?” I know it’s ridiculous, but I couldn’t help it.

And in the meantime, the world kept turning. Work had to be done. Business had to go on. Deadlines had to be met. Bills had to be paid. Appointments had to be kept. All together, Champ has had a total of 7 doctors involved in his treatment, which was complicated by his life-long condition of having extremely low platelets. Since his initial diagnosis, he has had a total of 75 doctor visits, and I have accompanied him to all of them except two radiations and one platelet transfusion.

I’ve always believed that helping someone else is a good way to get your mind off your own troubles. I started a Cancer Caregiver support group, for the also-selfish reason of having others who were going through what I was going through to talk to. I also got some anti-anxiety medication, but after reading all the side effects, decided not to take it. We’ve gotten a lot of comfort and support from friends and family, and from FB friends. One friend, who is a long-time cancer survivor herself, called Champ one day and said “I just wanted to call and say this is not all about you. Your wife is going through a lot, too, and you need to understand that. ”

Caregiver syndrome is common among those who are caring for their elderly parents or other family members with dementia and chronic diseases. It’s very easy  for other people to say “You have to take care of yourself. You have to make time for yourself.” That’s all true, but there were weeks when that was a joke, and I know the other caregivers out there know exactly what I mean. Since my husband’s medication was causing him to nap all day, he didn’t sleep at night. He kept me awake at night, and I would be exhausted during the day when I was trying to work. I would literally be ready to go to bed at 7 pm because I was just so tired. On the few occasions when I could squeeze in a massage, I just passed out cold on the table. Playing music is my stress relief, and I had some months of not being able to do that due to nerve damage in my hand. That was depressing to me on top of everything else, and I just wanted to stay in bed and cover up my head, or drink myself into oblivion.

When the sick person has to stop working, their disability insurance may not be any where near the amount of money they were used to making, and while insurance may be covering the sick person’s care, there are still deductibles, out of pocket expenses, over-the-counter drugs, various things that insurance will refuse to pay for that you end  up having to pay yourself, special foods and/or supplements, travel to and from doctor’s appointments, and the like that can be overwhelming. You may think you’re saving for retirement, but if your retirement plan doesn’t contain built-in accommodations for a sick family member that you may have to act as the caregiver for, you can be prepared to see a lot of money circling down the drain. Being a caregiver is not a disability, and neither your own insurance nor unemployment insurance is going to be there to help you. Caregivers frequently either have to miss a lot of work, or give up their jobs altogether, in order to provide care. If you’re self-employed, like I am, and you actively work in your business, you may have to pay someone to take your place, like I  have.

So yes, as a caregiver, you do have to take care of yourself, and that’s hard to do when your focus is on taking care of someone else.

I personally found out that what I needed more than anything was just help with every day things, and I think that’s probably true for everyone. A caregiver will appreciate someone cleaning their house, or doing their laundry, running errands for them, or bringing them a home-cooked meal. Some caregivers might appreciate having someone give their patient a ride to doctor’s appointments. Although people offered to do that, I personally did not want that because I wanted to be there for all of my husband’s appointments. Unless the caregivers you know are independently wealthy, gifts of money, prepaid credit cards, or gift cards to gas stations, local grocery stores, restaurants, or stores are always welcomed. A gift certificate for a massage, or a night away in a hotel–even a local one–is a good gift. Volunteering to stay with the sick person for a few hours, if they need constant attendance, is a good idea.

One complaint that I hear repeatedly from other caregivers is along the lines of  “My sister/brother never helps with my mother.” If one of your siblings is caring for your parent(s) or another sibling, and you haven’t been physically participating in that, then you need to do something else to help, instead of leaving it all on your siblings to deal with. Help them financially, or get off your butt and go spend the weekend doing what they do all the time, or pay for a home health care service to do it, so they can have a break. If you haven’t personally been a caregiver, don’t say “I know how it is.” No, you don’t. You don’t have any idea.

I have been very fortunate that my husband has maintained such a beautiful attitude during this entire ordeal. He took it all like the Champ he is. He has always appreciated me and always shown that, and this experience brought us even closer together. It was just six months ago that he was acting as the caretaker for me, when I was very sick with double pneumonia, a UTI that went systemic, and a gall bladder that needed emergency removal. That’s what we do, we take care of each other.

I expect that I am going to continue to have anxiety until his PET scan comes out clear. And the doctors have said he’ll continue to be regularly checked for the next five years. My depression is situational, and I hope to feel better myself as I see him feeling better and better. I’ll probably remain angry at the insurance company, and have to continue spending my time dealing with them. Based on some of what I’ve had to go through with them, I feel sorry for sick people who don’t have a witch like me in their corner to advocate for them. Our almost-daily doctor appointments are over now, so hopefully I will start feeling less exhausted.

I appreciate all the support, encouragement, cards and letters, gifts, and prayers and well-wishes that we’ve received. It has meant a lot to both of us, and were it not for that support, my caregiver syndrome would probably be a lot worse than it has been. Thank you all. And please, do whatever you can to help the people in your lives who are caregivers, and if you are the caregiver, don’t be afraid to say “I need help.”

 

 

 

Priorities

I’ve been writing about the goings-on in the world of massage since 2007, reporting on what’s going on with regulations, the associations, scams and so forth, along with a healthy dose of my opinion about it. I’ve written somewhere in the vicinity of 300 blogs (my whole blogroll is on Massage Magazine’s website). I’ve slowed down lately. There are always things going on in the massage profession that are news-worthy, and I’m not hanging it up on the blog, but I am taking a little break.

Around the first of December, my husband, Champ, was diagnosed with Stage IV cancer in his tonsils and three lymph nodes on his neck. Our life was changed in the blink of an eye. I now think of it as BC (Before Cancer) and AC (After Cancer). Our life revolves around his treatment. He’s getting radiation 5 days a week (today ends week #3 out of 7 weeks the doctor has planned). Today he’s getting chemo #2 and the doctor has not yet made the final call on how many he’ll be receiving. Maybe as few as 4, or as many as 7. We’ll cross that bridge when we come to it.

Champ has a life-long platelet condition that complicates things. Most people have a platelet count of between 150,000-400,000. His are normally less that 20,000. They have been as low as 3,000. Right now, thanks to a platelet-building drug called Promacta, they’re up to about 40,000. Chemo knocks platelets down, so they’re monitoring his blood a couple of times a week to make sure he can withstand the chemo.

I’ve spent a lot of time on the phone with the insurance company. They want you to have pre-approval to sneeze. They want all referrals to come from the person they think it should come from. They want to get out of paying whenever possible. I’m not taking that lying down, and it’s time-consuming and stressful. Nothing, however, prepares you for the stress of seeing the love of your life sick with a life-threatening disease. I lie awake at night and worry. Then I’m tired during the daytime. I cry. I stress over things that are beyond my control, and I have frequent meltdowns. Our friends and family have rallied around  and the emotional support is invaluable. It has spurred me to start hosting a Cancer Caregiver Support Group at my office, and to start a campaign to provide cancer caregivers with free massage.

Champ is getting the best of care. Janet Powell, Nurse Practitioner; Dr. Patric Ferguson, ENT; Dr. Zvonimir Milas, Surgeon; Dr. Mary Ann Knovich, Director of Blood Disorders at Levine Cancer Institute; Dr. Diego Pavone, Surgeon; Dr. Jeffrey Roberts, Oncology Radiologist, and Dr. Matt Rees, Oncologist/Hematologist, are all involved in his care. The nurses are wonderful. Everyone has moved as quickly as possible to take care of his needs.

So at the moment, my priority is seeing my husband get well. If something earth-shaking happens in massage-land, I usually mention that on my Facebook page, which you’re welcome to follow. We really appreciate all who have sent us messages, cards, called us on the phone, offered us food, financial help, prayers and well-wishes. Thank you all.

A lot of people have asked me if I have set up a gofundme page or something for Champ. I have not, and it isn’t that we don’t need help, but people were kind to us to donate to the silent auction that was held for me and send contributions to us last fall when I was the one who was sick, and I haven’t wanted to take advantage of people’s generosity.

Another thing has hit home to me since Champ has been sick, and that is the amount of stress that caregivers are under. Every morning when I go with Champ to his radiation treatments, I talk with the other caregivers who are in the waiting room. They are all in the same boat I am, trying to navigate the cancer maze, while dealing with fear, uncertainty, and the misery of seeing their loved ones sick. I want to offer them all a free massage, and I can’t. I am usually the receptionist/maid/laundry person at our office, and I have missed a lot of work and had to pay someone to do that while I go with Champ to all his appointments, and needless to say he cannot work right now, either. It has been a strain. So I have had the idea that instead of a gofundme, I would ask people to buy a gift certificate from our business for a cancer caregiver. The profit will help me pay for the people who are covering the office, and we’ll be able to provide some massage for people who need it. If you feel led to contribute to that, you can go to our online gift certificate. In the area that says recipient, put CANCER CAREGIVER and for the email address, put therassage@bellsouth.net. If you’re a local person, please consider giving a gift certificate to any cancer caregiver (or other caregiver) you might personally know. We appreciate the support, and we appreciate the emotional support. Thank you so much. https://thera.boomtime.com/lgift.

To those who are going through the same thing, don’t go through it alone. Join a support group–or start one. I’ve had to let go of some things. The world isn’t going to come to an end if my house isn’t clean, or if I don’t make it to the Chamber of Commerce meeting, or if the paperwork is piled higher than usual at the office. At the end of life, no one is going to wish they had spent more time cleaning or working. We will all wish that we had spent more time with our loved ones. That’s my priority.