Monday, August 29, 2016

A Post For Friends of Sick People

Barbara over at Let Life Happen blogged about visiting breast cancer patients. I feel this is a greatly ignored topic and want to add my two cents on this. For the benefit of all patients, I feel that this is a topic that gets ignored by too many.

First of all, before you visit a sick person, put yourself in their shoes. When are you feeling awful, do you want to entertain someone for hours? Do you want to answer dozens of phone calls asking the same thing? Don't you want to sleep or watch bad TV or sip herbal tea in your bathrobe with fuzzy slippers on your feet? If you are in pain, what is your preferred activity - lying in bed with your tablet or sitting up in a chair talking to people? Please think first before you go visit someone who is ill or even call them.

Second of all, if someone is in the hospital these days, chances are they are not doing very well. I have never gotten a good night's sleep in the hospital (because my blood is best between 3-5 AM when they come to get it and wake me up). I am probably not feeling well and am usually cranky as a result. I am probably in my pajamas (or a lovely Dr. Seymour Butts hospital gown) and not looking my best. Chances are I am in pain as well.

Never just drop by because you 'were in the hospital'. A few years back, a friend 'dropped by' because she had some blood work done at 8 AM on the day after a major surgery. A very bad thing to do. I don't know what she was thinking. Visiting hours didn't even start until 11 AM. I was in a lot of pain and really didn't want to see anyone.

Having a party in someone's hospital room is a really bad idea. A friend had heart surgery in his early-30s. My then-boyfriend and a bunch of other friends were going to visit him at the hospital a day or two after surgery. I refused to go. Why? Because I had been a patient and had surgery and knew I would not want that many visitors for a few hours a couple of days after surgery.

I can't tell you how many times in the hospital, I have seen hospital rooms full of a dozen visitors for several hours and the patient is dozing in bed (probably wishing they would all just leave and let them rest). A hospital room is not a party room.

Once a patient is home, that doesn't mean the door is open for non-stop visitors. They probably want to rest and recover. They might have visiting nurses and PT/OT for a few weeks. If you want to visit, call first. If you don't get them, leave a message and wait for them to get back to you.

Honestly the best bet for visiting someone after surgery or who is ill enough to require hospitalization is to call before any medical misadventures and ask about visiting them afterwards. Do not assume anything. Some people may welcome visitors and some may not. You cannot know unless you ask. Also, you might want to offer to stop and get them some groceries or bring a casserole. Just ask first.

When I am in the hospital, I tell everyone the only ones to visit me in the hospital are my husband and my immediate family. Everyone else can wait until I tell them I am ready.

Finally, if you have been exposed to or are harboring any germs yourself, stay away until you are healthy.

Sunday, August 28, 2016

Good News/Bad News

So the good news is that heart disease is becoming less of a problem for many Americans and the death rate is down. But the bad news is that cancer is beginning to take over as the leading cause of death of Americans. It is already the leading cause of death for Asians and Pacific Islanders.
Well whoop de do. Does that make me any less likely to die of heart disease or cancer? Not really.

Friday, August 26, 2016

Exercise for Memory???? Or Cancer Causes Stress.

A new study (because we all new more studies) says that exercise can boost memory for breast cancer patients. What? I exercise and my memory is shot, getting worse every day. I don't believe it.

The theory is that exercise alleviates stress and benefits women psychologically which improves their memory.

"A surprising finding is memory problems appear to be related to the high stress load cancer survivors experience, and may not be specific to chemotherapy or radiation treatments."

That's surprising? To me this is even more important than figuring out that exercise improves memory. Seriously, I could have told you that a cancer diagnosis causes incredible stress. It just amazes me how many people do not get that part. Obviously they haven't been diagnosed with cancer. 

Wednesday, August 24, 2016

Stop Comparing

When I was diagnosed with breast cancer, I quickly learned every person's cancer is different - even if they have the same diagnosis. (This is why it is so hard to treat.) I learned not to compare myself to anyone else. In every support group, even if we had the same diagnosis, we learned how different all are.

I get this. We are all different. We can't compare our cancers to each other.

But.... why do I keep comparing my rheumatoid arthritis to others? I have to stop comparing myself. My mother has had RA since 1989 and a friend (exact same age as me) has had RA since the early 2000's. Their differences are striking. My mother was diagnosed when they only treated RA when it became symptomatic so she has many of the deformities and issues common among patients treated according to the old standards. But her health is much more stable than mine. My friend has had RA and has very few problems. Until she retired (for non-health reasons), she worked full time including much business travel and long days.

Me? I struggle with fatigue, pain, and more fatigue and more pain. How did I get to be so special? I try not to compare myself with my friend but I do.

As medical diagnoses go, everyone is unique. It doesn't matter if three people have the exact same diagnosis but because of their genetic make up, medical history, and other issues, each is unique. No two are alike (boy am I glad I am not a doctor trying to cure people). And everyone interprets everything different. Some people might be distressed by a little nausea and others may not think it significant.

The lesson that I need to better learn is that I need to stop comparing myself to anyone else's medical stuff. I am unique and so is everyone else. I just need to focus on this life lesson. I think I will stop whining as much if I did. Everyone else will appreciate that part.

Tuesday, August 23, 2016

Has A Cancer Diagnosis Changed How You Think?

I was reading over at KatyDid Cancer that she turned 41. After being diagnosed with breast cancer before 35 she was never sure she would get to 40, or 41. (But now she is thinking 50.)

This made me think. How do I think about how long I will live? And how would I think differently about how long I would live if I had never had cancer?

At 19 (and invincible) I had no thought of how long I would live. Because I was barely an adult and between my freshman and sophomore years of college. And longevity was the last thing on my mind. I just assumed it would be shorter than without cancer.

At 45 I was more responsible and married with a second diagnosis. The thought of how long I would live definitely popped up again. But what was most concerning was how would I have thought differently if I had never had cancer? I have struggled with this one: how had my life been impacted by cancer which was something I never wanted. 

During the intervening years my thought processes had changed of course. But how would I have thought different if I never had cancer? I never really had a chance to be an adult without cancer so I have no idea on what I would have thought.

But since I can not undo the past, I have to settle with my current thoughts. Which doesn't give me any good answers.

Monday, August 22, 2016

I Am Feeling Stressed

I didn't blog yesterday and am a little late today because I hadn't really decided what was going on with me. Finally (call me slow if you want) I decided I am feeling stressed. And I am beginning to figure out why I am so stressed. I have a lot going on. Nothing major medically but just too much stress for me.

Last month, in the spirit of doing something good, I decided to convince my husband we need to adopt a third cat. As soon as I asked about where are the good local shelters someone offered me her two cats that she needed to get rid of (because her son was moving home with his dog who didn't get along with the cats). [Maybe the son shouldn't have been allowed to bring his dog home.... but its not my house so I kept my mouth shut.]

We waited until we got back from vacation and picked them up a week ago Sunday. When we went to pick them up my husband said 'you are making a mistake' but I still thought I was doing something good.

They were two incredibly obese orange tabbies that had been locked into an unfinished room in the basement without windows for 'several weeks'. They were not in good shape. I still thought I was doing something good.

We brought them home and put them into a separate room and I put them on diet food. Except Sunday afternoon we had two cats. Monday we only had two cats for a brief period of time in the afternoon. Tuesday afternoon we had two cats for about 5 minutes. This Sunday morning, after reporting a lost cat to animal control, we then had two cats again at about 4 am. We also had two cats for about 30 seconds at 5 am this morning. One of them (I think its Jake not Ginger), can jump over the baby gate we have keeping them in a separate room. He keeps hiding in the basement (we think).

This morning I found someone had pooped on the laundry room floor and someone else had tossed their cookies on the rug in the finished part of the basement. I decided that's it. They have to go back. We took them conditionally - if WW III broke out in our house, they had to go back. Right now we have four cats who keep hissing and growling at us and each other. I can't take it.

Ginger (or whichever is not lost living in the basement) meows all the time when he is hungry - which is all the time because he is on a diet. He keeps me up. (Who names a boy cat Ginger anyway?) If I close the door to either his room or our room, I can still hear him meow. I don't sleep well because of my pain levels and other health issues anyway. And if one cat is not meowing, another one is, or growling, or hissing at each other and having a 'conversation' that keeps me awake.

I really wanted to do a good thing but I can't do this one. I need to take them back asap. Like this afternoon. I am getting rid of one today around 6pm. I just have to find the other one so I can take them both back.

I do feel guilt. But I also believe that I need to take better care of myself. I felt my stress level go down after I made the decision. I called my husband and he is okay with my decision (and is probably telling me that I was making a mistake in the first place.

I am not in the position to do good deeds until I am in a better place with my place (in a few thousand light years).

Sunday, August 21, 2016

I'm Not Suffering From Anything

I am not suffering from anything. I am living with a bunch of medical ailments, among them insanity.

Suffering sucks. Living is good. Its all about attitude in life. I think if you let yourself only see the downside of life (the half empty), you will miss out on the positive (the half full). So live with what you have and stop letting yourself suffer.

And enjoy your ride with your insanity

Saturday, August 20, 2016

I Wasn't Up To Blogging

Yesterday I was not up to blogging. I meant to blog. But I didn't. I couldn't. I couldn't come up with anything to blog about because I was too tired to think.

I haven't been sleeping well for the past week or so. I have been very tired and not able to nap for some reason. And every morning either I had to get up and go somewhere or I just woke up and couldn't fall back to sleep. Thursday afternoon I was so exhausted. I wanted to nap but couldn't. I also had to take the (EK) to the vet. I just wanted to sleep. Thursday night even thought exhausted I didn't sleep well.

Yesterday morning I also had to go to an appointment with the SSDI doctor as part of my disability application. I was kind of dreading it. I didn't know what I was going to be asked. I didn't really know where it was. I was really tired. But my husband took the day off and drove me. He went out for breakfast while I talked to the doctor.

My appointment actually went pretty well. The doctor, a psychiatrist, wanted to talk to me about my depression and anxiety issues. I was so exhausted so that wasn't that hard to talk about depression. I hope it helps my application.

Once we came home, I got to lie down for a while (and watch bad TV - which is what I call anything that is instantly forgettable). I did talk myself into going to the gym because I didn't go for the last two weeks because we were away and I told myself otherwise I would have to go today to make up for it. However, I didn't get through even half my work out. I was too tired to finish my cardio (when you feel like you are falling asleep while on the stepper, its time to go home.

After I got home, I slept for about 45 minutes. Magic! It was wonderful. I felt so much better. Then I slept pretty well last night. Sleep is a wonderful thing so today I feel almost like a normal person.

Thursday, August 18, 2016

Breast Cancer Retrospective

Before my breast cancer diagnosis, I was aware of breast cancer around me. A co-worker's mother, another co-worker's wife, my parent's neighbor, and more. But it never really touched me because no one I knew personally was diagnosed with breast cancer. It was a disease of older women. I also felt because I had previously had cancer that sometimes people expected me to be more sympathetic to other's cancer diagnoses. I did feel some guilt because of this.

I never expected to be diagnosed with another cancer. I felt I already had my share of cancer with thyroid cancer. I didn't 'deserve' any more. Because I had a benign breast tumor at age 22, I really did have my share of medical crap. However I got to have a mammogram every year from then. How fun is that!

At age 45, my annual mammogram was scheduled for January - just as I was starting a new job. I pushed it back to early May so I wasn't a new employee who immediately needed time off. I mean it was just a mammogram that I had had for years upon years upon years. No big deal. BUT that was the bad one. They called me back for extra scans and then they sent me for an immediate ultrasound which was bad.

I was in denial. My mammogram was May 8. My recall mammogram was May 14. (I was laid off from my job on May 18.) Then I saw the surgeon May 23 and had a needle biopsy on May 29. I was called on May 31 to get the news that I had breast cancer. Until I got that phone call from my surgeon, I was in denial. I could not have another cancer. No way. No how. Not me!

I stayed in denial for a long time. I did join a support group before my second surgery to make sure I had the emotional support I needed. Once I was diagnosed with cancer a second time, I was not going to let cancer suck anymore time out of my life so I started working on the emotional side of me.

I started getting pissed off. I mean cancer had stolen so much out of my 20s and 30s and early 40s that I wasn't going to let it happen again.

I think I finally got into the grief stage early in chemo when my hair was falling out, I had neutropenia, was hospitalized, and I felt like shit. Seriously the days when my hair was falling out, I was stuck in a hospital bed. I was so sad about how bad I felt and how much my life had changed. I was not happy.

I really struggled during chemo when I had to keep going to chemo and again and again. It was really hard. I love food and love to cook but I spent most of my five months of chemo focusing on keeping food in my stomach, living on the BRAT diet, and running out of rooms due to the aromas rising from plates of food. (But did I lose weight? No!) I was depressed then. I was in a second support group for women with breast cancer. It was designed as an 'introduction to breast cancer' for the newly diagnosed. But I still struggled.

Finally chemo ended and I started radiation and found a therapist. We spent a lot of time discussing the changes cancer makes in your life. I did struggle emotionally but I hoped I had enough support. Then my health started to tank. If you thought I had it bad with breast cancer, my life since then has been a never ending list of medical disaster after medical disaster.

Breast cancer continued to loom over my life. Even though I had a non stop list of medical disasters I considered myself to be a breast cancer patient. Why? Because I identified it that way. I didn't put a pink label on myself but I still thought of myself that way. Somewhere along the way I decided I couldn't let breast cancer identify me. I mean I am not a 'pink warrior' or anything like that.

Was I depressed? Yes because every time I took one step forward, I felt like I slid two steps back. Am I still depressed? I think so. I have to cope every day with the fact that not only was I diagnosed with cancer twice, I no longer can work. I need to plan my life around my limitations. The list of things I can't do is huge. Can I meet friends for shopping or a museum? No. How about out to dinner and a movie? No.

But breast cancer doesn't dominate my life I may not still be in the depression stage from it. So post cancer depression? Maybe not. Maybe I am finally getting to the acceptance stage. Its been a long road. Every mammogram raises my scanxiety level. Again. I am not sure that is ever going away. Every doctor appointment which includes a breast exam gives me a twinge.... I accept that I have breast cancer and that it will loom over me for the rest of my life. 

Wednesday, August 17, 2016

I'm Not That Unhealthy

Last year I broke down and asked my rheumatologist if she would sign a handicapped parking placard application for me.  After a long wait (several months) I finally received my placard but it was only good for one year.

I had to reapply this year and did receive a permanent placard that is good for five years and then I will automatically receive another one for the following five years (until I am gone). But, I have no idea what my rheumatologist wrote on the application, the RMV wants my doctor to clarify whether I am healthy enough to drive.

Honestly you didn't think I was unhealthy enough to have a handicapped placard last year and now you think I am that disabled? Seriously?

Tuesday, August 16, 2016

I Keep Being Asked

My therapist and my meds therapist seem to think I should be getting over my depression. They call it 'post-cancer depression'. I feel some confusion there. Am I supposed to be magically better because I haven't had a cancer recurrence? Seriously. I feel not confusion, but more of a disconnect.

I was first told that I had depression when I first went to a therapist (years) after my first cancer diagnosis. I managed to keep my depression in check after a good deal of therapy and more years of being healthy. Then with my second cancer diagnosis, how funny was it that my depression returned? It didn't help that then my health really tanked.... And my depression hasn't gone away.

Maybe if I was healthy again, my depression wouldn't be as much of a factor in my life. I noticed a few weeks ago when I intentionally spent a day at home by myself that I needed to then spent the next few days out doing something with other people.

Another assumption on the part of my therapists. I guess I now have a project to deal with - training my treatment team. A big part of being a patient is managing your treatment team.

This is the same as an employee needing to manage up - train their manager on what to expect from them as an employee. I learned this lesson early in my career. If you want to grow as an employee you need to make sure your manager understands where you are coming from.

I hope by now you can see where this is going. The same as being a patient. When you see your doctor or a medical professional you need to make sure they understand what is happening in your life. Have you undergone any recent testing, have you had any changes in your recent health, etc. Has your life changed at all? How are they supposed to treat you appropriately if they do not stay up to date with what is going on with you?

So now I need to train my therapists so they can follow what I am doing and understand what is going on in my life. And they can stop their assumptions about my depression.

Monday, August 15, 2016

Back To Reality

Groan! We were on vacation for two weeks. Most of the time we were on the ocean. We have been home for a few days already but I allowed myself to stay in vacation mode until this morning. In the past two weeks, I:
  • Have not had a doctor appointment - that changes as of 1045 AM this morning. I have an appointment with my therapist. Later this week I see the periodontist and have a medical exam for my Social Security Disability application. 
  • Gone to the gym - I thought I needed a break. I haven't been sitting on my butt. I have gone and floated around the ocean and made sure I did get some exercise in.
  • Taken care of housework or home repairs or work - Back to repainting the rooms in the house. I will start with one wall of the basement today. It will probably take me several days to finish because I have to rest in between but I really hate the dark navy blue that is on two of the walls down there. I figure it will take me a year to paint at this rate. The cleaning lady is coming on Wednesday so I also have to tidy up so she can clean.
  • Gotten together with any friends. I am meeting one for lunch tomorrow and will probably catch up with a couple others on the phone in the next few days.
But this has been a welcome break. I don't think its a vacation if you keep doing all the things you normally do. Even thought I do not go to work any more, I do need a change of pace from time to time and get away from it all. 

Not having doctor appointments is a nice break. I tried not to think about my medical issues except when I am in so much pain I couldn't do anything. It was a needed mental health break. 

I usually go to the gym three times a week. I have felt a bit flabby from time to time but I also wanted to see how I physically do without going to the gym. A big part of it was to see if I actually had a reduction in pain by not exercising. Or to state it differently, are my regular workouts causing pain or other problems.

I have no schedule for painting the house. I just hate the colors the rooms were painted. I have no expectations that I am a perfect painter but since I can't work any more, I can't justify paying someone to paint. Nor to I expect to rush through this as I am so limited in my physical abilities. But its one thing that I can do to help around the house. 

Not talking to friends is fine. We were with my family and its not like I have a huge social calendar that needs to be juggled. I will catch up with all in the next few weeks. 

An emotional break from a lot of obligations made me relax more. Unfortunately it has to come to an end and I will go to the gym and my therapist this morning to get back in the swing of things. 

Sunday, August 14, 2016

This Isn't Working

I haven't gotten enough sleep for the past several nights. Why? Because I wake up uncomfortable and can't sleep. Maybe its because we slept in a different bed for two weeks at the rental. Or because I haven't been to the gym for two weeks because we were away. Or because I floated around in the ocean most days. All I know is everything hurts. And it sucks.

However, I have a plan:
  • Take a sleeping pill
  • Take a pain pill
  • Find a really boring book to put me to sleep
So now I will take my great strategic plan and implement it and catch up on some Zzzzssss. I hope

Saturday, August 13, 2016

Downside of Cancer Blogging

In the cancer world, particularly the cancer blogging world, you get to know a lot of really sick people. The problem is that every so often cancer takes one of the people you know.

Over the years, I have 'met' lots of people and gotten to know them fairly well. One of them I have admired since I first met her, Jill of Dancing with Cancer, Living with Mets. She was diagnosed with breast cancer in 1999 when she was in her late 30s. It then returned and metastasized. She blogged about her treatment and her travels and other adventures regularly. While she dealt with all kinds of medical problems related to her cancer, she didn't let it stop her.

Unfortunately yesterday cancer took her away from us. She didn't lose her battle. She didn't fight until the end. She lived her life as she wanted. I was such a fan of her. Go read her blog and learn about her.

Friday, August 12, 2016

New Questions To Ponder

Sometimes I think I should stop receiving and reading emails. I got too many this week:

  • Is Your Fibromyalgia Primary or Secondary? Basically from which ailment your fibromyalgia is manifesting it will indicate the correct direction for a more successful treatment protocol.
  • New Guidelines for Adults with Chronic Pain and a History of Cancer - Oh, joy. Just another example of how cancer changes everything... "If a patient reports new onset of pain, clinicians should evaluate and monitor for recurrent disease, second malignancy, or late-onset effects of treatment." How does that sound? Because with cancer, every pain not only could signal RA progression it could also be cancer mets....
  • Cancer Survival is Worse in RA Patients - More joy. And just another example of how cancer changes everything... There are higher mortality rates for many cancers for patients with rheumatoid arthritis.
So now I have so much good news in my life, I am not sure if I should go back to bed or should I just pretend I didn't read any of it? 

This is a good sampling of my life these days. First of all lots of conflicting information. Then lots of information on how one ailment complicates treatments for other ailments. And long term prognoses can just suck.