Living in Chronic Pain? Create Your Own Brief History

Recently I was talking to another CML buddy about my pleural effusion. He has also suffered from pleural effusion as well as many other side effects, which many of us deal with, too. I thought that I was pretty darn good at keeping tabs of my medical issues and records, but when I saw his “Brief History” I was very impressed.

He actually encouraged me to start my own brief history quite some time ago, and I am not really sure why I never got around to it. Now, I have to go back through my “thick” medical records that I DO have, and create a wonderful “Brief History”, like his!

I would encourage each and every one of you to do the same; even if you don’t go back to your diagnosis, you can begin documenting your important data now, as we all will be managing and living with CML, for the rest of our lives.

My friend has kindly allowed me to share his Brief History, with you, as an example.

DX CML 12-23-2008
MDA Protocol: Tasigna-400mg; 2xday-1/09
On Flecainide for AF...still had frequent episodes
Q PCR bone@ MDA…0.17 on 7/09
Acute Pancreatitis-7/5/09
Stopped Tasigna-7/13/09
Q PCRU blood @ Baptist…undetected-7-29-09 !
Started Gleevec-400mg/day-7/31/09
Developed rash ~ 8/19/09
Rash treated with Steroids..improvement
Rash worsens~9/22/09
Stopped Gleevec-9/28/09
Restarted Gleevec @300mg/day-10/8/09
Stopped Gleevec-10/13/09-toxic rash\
AF returned infrequently
Q PCR bone-0.05
Started Sprycel @ 100mg/day-10/20/09
Some AF...increased FLecainde..1, 2x/day
Q PCR bone @ MDA..0.07
Stopped Alcohol…no AF, ½ Flecainide 2x/day
Q PCR Blood @ Baptist…Non Detectible-12-13-10
Q PCR Bone @ MDA..0.01--2-25-11
Q PCR Blood @ Baptist…Undetectible-5-19-11
Reduced Flecainide to 1/2 per day
Pleural and pericardial Effusion: stopped Sprycel-12-6-'11
Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction
Pleural Effusion clear 12-21-11
Started Sprycel 70mg/day..12-23-11
QPR bone @ MDA.. <0 .01...2-16-12="" span="">
Started Sprycel 50mg/day..3-10-12
Chest pains...slightly more PL Eff 4-19-12
Steroid Dose pack to alleviate:.still on 50mgs
Change to 20 mgs/day Sprycel..4-26-12
Chest clear, effusion gone-5-14-12
Q-PCR Blood @ Baptist-Undetectible-6-13-12
Neuropathy moving up legs, some weakness noted--12
Q-PCR Blood @ MDA..<0 .01="" span="">
Q-PCR Bone @ MDA…<0 .01="" span="">
Q-PCR Blood @ Baptist….Undetectible..6-19-13

Hospital Tips!

If you or anyone you know and love should end up in a hospital bed; here are a few tips to help make your stay more comfortable.

First and foremost is when you are in your room, close your door! There are many reasons to keep your door closed both night and day. The most important one is that it is so much quieter; you and your visitors are allowed peace and privacy. You can escape from the hustle and bustle that is going on around you; and at night you can actually get some sleep. The other critical reason for keeping your door closed is that unless you WANT to be a fish in a fish bowl, you will protect yourself, not only from the other patients’ stares as they are doing their laps, but from all of the other patients’ visitors as well, not to mention the plethora of  hospital employees that continually roam the halls.

Let me just tell you what I saw on my daily jaunts around the nurses’ station; there were several very elderly people, some falling out of chairs, others’ lying in their beds with their heads dangling and their moths’ open; almost always alone. It was very depressing and sad. Then there were the screamers, which every time you walked by they would scream out in pain. Yes, I know I screamed when I had my bone marrow biopsy, but my door WAS closed! One of my favorites was the guy that had his bed sitting straight up; he had his shirt off, his covers down and he thought that he was “all that, and then some”, it was hysterical, he would look you straight in the eye and grin when you walked by. Rather, creepy! Sometimes you would witness a patient with a full room of visitors and often you witnessed patients hobbling to the bathroom with their rear ends sticking out of there hospital gowns. So unless you want to become part of the entertainment; I would suggest closing your door. And yes, you can train the hospital staff to close it behind them when they leave; it just takes a few reminders per shift.

Second important tip is to be really nice to the hospital staff. You are at their mercy! This trickles right down the chain of command and gets you two egg croissants when you ask for them. If you are nice to them, they answer your call button on the first buzz.

Third tip would be items of comfort; have someone bring you your own pillow, slippers, socks,  robe and jammies. You will be much more comfortable in your own clothing and resting your head on your own pillow. Ear plugs and an eye mask are essential; Desert Regional Hospital actually gives them to their patients.

Other items of comfort might include Charmin toilet paper, soft Kleenex, Chap Stick and lotion, a hairbrush or comb,  snacks that are available when you are hungry and an electric hot pot that you can either make tea or coffee, or heat up that cold soup from lunch when you are ready to eat it. A notebook and pen are also nice to have so that you can jot down questions when you think of them. A large folder or envelope is helpful in keeping all of the papers that you will be receiving organized.  A bag that holds all of these things and hangs on the side of your bed is great, too.

Medical Expenses of Leukemia: I Need Your Help!

I suppose that since it is National Leukemia and Lymphoma Month, now would be a great time for me to begin freaking out about my medical insurance that resets on January 1^st of every year. Since I have been self-employed, in one form or another for most of my adult life, I have never had the good fortune of being included in the benefits of an employer’s health insurance plan. I have had to purchase my own health insurance, which I have done through Anthem Blue Cross, for the past thirty years. Fortunately, I have had the wither-all and means in which to do so, despite the high rates and low benefits that have been available to me.

I have always figured that some health insurance is better than no health insurance at all, and since I have always been in great health, a catastrophic insurance plan has always been a good choice for me. A catastrophic health insurance plan is literally just that. It does not pay for the small medical instances such as a sore throat, flu of urinary tract infection, but does cover larger instances such as appendectomy’s, or in my case, cancer. The biggest drawback is the extremely high, yearly out of pocket expense. Last year, needless to say, I met that expense in one fell swoop; when I was admitted to the hospital, after being diagnosed with leukemia. Normally, this would not be an issue; I would have been hospitalized, cured and sent home. I would have had to pay one, great big, out of pocket insurance deductible. I would have recovered, picked myself up, dusted myself off and gotten right back to work!

The issue arises from the fact that my type of leukemia is not curable, only manageable, which means, extremely high medical costs that reset on a yearly basis. I will need to come up with a $5000 deductible at the first of every year for the rest of my life. This in addition to the many other out of pocket expenses and extremely high cost of my medication, has kept me up many a night; worrying.

I have been very blessed with random and surprising donations, and am extremely grateful to all of you that have helped me in my fight thus far. I have never been very good at asking for help of any kind, but I am afraid that I have been humbled by leukemia. I have found a few writing gigs, some sewing and cakes that need making, but I am afraid that none of these are yet, profitable enough to keep my head and body for that matter, above ground for long. I have found some really cute bracelets that are cancer/leukemia related and I am going to try and sell them as somewhat of a fund raiser. They range in price from $7.50 to $18.00. If you simply wish to donate, there is a place to do so in my right column. Desperate measures require desperate times. Of course, I am also willing to consider any and all other options or opportunities offered to me.

For those of you that can and do, my humblest thanks. For those of you in the same boat, or even one with more holes in the bottom of it, you have my emotional support and empathy. And to all of you that just read and support me through encouragement and kind words, please know that I am eternally grateful. 

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