Saturday

Philadelphia Positive


Today is the day.

Today is my "anniversary" or "birthday" if you will. Cancerversary?

Today marks one year exactly from the day I was diagnosed with Chronic Myelogenous Leukemia. (CML)

Today is a day to celebrate my one year mark of survival.

Today is also International CML Awareness Day.

Today... 9-22 is significant because it is the chromosomes 9 and 22 which mutate and cause CML. This is called a Philadelphia positive chromosome.

Today is a good day because I'm still here and I'm happy there is a chemo pill I take every day that keeps my Leukemia chronic and not aggressive.

I wish I wasn't alone today. I wish there were others with me. I wish someone could celebrate this special "Life Day" with me.


Friday

It's Only Fat!

Test: CT Chest Abdomen Pelvis With Contrast 
Resulted Date: 9/19/2012 Status: Final Result 



REASON FOR EXAM: Left flank mass, history of CML and right pelvic chondrosarcoma 
After the administration of intravenous and oral contrast, spiral CT of the 
chest, abdomen and pelvis was performed. Delayed images of the abdomen and 
pelvis were also obtained. Axial plane images are reviewed in soft tissue, lung 
and bone windows on computer workstation. 
100 cc Isovue-370 
Dose parameters for this examination:
number of series: 
maximal CTDI 14.3 mGy 
total DLP 1606.9 mGy-cm. 

COMPARISON: 10/05/2011 

FINDINGS: A skin marker was placed over the mass on the left flank. The mass 
corresponds to a 4.2 x 3.9 x 9.6 cm fat density mass with a thin smooth 
capsule. The lumen of the mass is homogeneous fat density. No enhancing 
component is present. Similar mass was present on the previous study dated 
10/05/2011.
Thoracic inlet is normal. No axillary lymphadenopathy.

Mediastinal structures are normal. Densely calcified mass in the right lower 
lobe is stable. The lungs are otherwise clear. No infiltrate or pleural 
effusion.
Air in the left hepatic duct is again noted. There is a small amount of air in 
the common bile duct. Gallbladder is surgically absent. The pancreas, spleen, 
adrenal glands and abdominal aorta are unremarkable. Vascular calcifications 
are noted. 

Small intestine and colon are within normal limits. 
Previously identified surgical changes on the right side of the pelvis are 
again noted. The right pubis and most of the right ischium have been removed 
degenerative changes in the SI joints and lower lumbar spine are noted. No 
lymphadenopathy. No inflammation or ascites. 


Impression:  
1. The left flank mass is most consistent with extra muscular lipoma. 
2. Surgical changes in the pelvis 
3. Old granulomatous disease 


Tuesday

Even Roses Have Bad Days


A visit to the clinic today for a CT scan, with contrast. No food after 1pm. Start drinking contrast fluid at 2:30 about ten ounces every twenty minutes until 4:30. I was supposed to be called in for the scan at that time. By 5pm I started getting sharp stomach pains and made a run for the bathroom down the hall. I made it but not  all the way. Just then a woman came in. (poor thing!) I told her I was sick (surely it was obvious) and could she get my husband from the radiology waiting room. She ran out (smart woman) and didn't return.

I hate losing control like that. Being sick in public is humiliating and de-humanizing. I had to ask for hospital gowns to wear. Momentarily, I thought to go home. That would have been the sensible thing to do. Right? Not! There's no way I would go home after ingesting that contrast stuff and then have to come back to do it all over again!!! No thank you! I stayed there and dealt with the situation. I've been through worse.


Once my sweet man helped me clean up and got the gowns for me, he escorted me back to the radiology dept. I spoke to one of the techs, told her I was ill and she got me in to lie down quickly, covered me with a heated blanket and I was soon feeling much better. And we got on with doing the scan. Unfortunately, I don't have any nice puffy veins left so they have to hunt one down. The tech went and got another person to come and insert the IV on the side of my wrist. He really did a good job of it. Didn't hurt all that much, and I have no bruise!!!! Woo Hoo!

I'm sure the average reader would not care to be looking at this post. But, this is what my blog is about. It includes the thorns and roses of everyday life whilst managing one's health issues. So things are not always going to be pleasant. Life sucks sometimes. But if you hang on long enough you get through it, a little demoralized occasionally, but then you go on from there.

I requested a copy of my scan and recieved it before I left. Oh... why did I have the scan? I have a soft lump in my left flank at waist level. It's about the size of a small boiled egg, and feels like it too.

Thursday

A Little Scare

After the bone marrow biopsy the other day, the nurse placed a large and bulky pressure type bandage upon the spot where the doctor had inserted his instruments.(resembling the picture below).


I didn't mind it at first as my behind
was so numb, I didn't even notice it. That night I slept reasonably comfortable as I had taken pain medicine figuring there would be residual pain when the Novocaine wore off.

I kept the bandage on all day yesterday. But today it was getting annoying. I either hadn't paid attention or no one said anything about when to remove it.

Or... wait... perhaps the instructions of when to move it were on that paper I signed without wearing my glasses! Yes, I do believe that's it. What a trusting patient I am... or perhaps clueless?
scattered-brain
Digital Art by Elizabeth Munroz

I scare myself when I think of how irresponsible that was of me!

Needless to say, the bandage was bothering me. It was quite bulky and the tape was pulling and stretching my skin every time I moved. So, I fussed with it and pulled it off.

Continuing to apply pressure I went to the nearest mirror and turned to look at my behind while I lowered the bandage. No sign of blood! Phew!

I kept looking at it for a minute to see if I was mistaken, but there was no sign. I went back to the part of the gauze that had fallen off in order to take another look at the piece that I thought had looked bloody. Yes, it still had a little glob of something on it. I realized it was probably gooey Betadine ointment and not blood at all.

I relaxed and  removed the rest of the bandage and it's been fine since then.

I realize, in retrospect, I need to be more attentive and sensible about these things and ask for help when I need it. I could have asked someone to read the paper to me that I signed without my glasses. Or better yet, I could have made the effort to dig through my purse and find said glasses.

I also realize that because I took an Ativan before the procedure, (just in case this time would not be so easy) that is why I had the careless attitude.

How cavalier I was in signing those papers. What if there was something serious I missed by not reading them? This circumstance was nothing. But it gave me pause to re-prioritize.

Next time I will ask my sweetheart, who went with me to hold my hand, to help me be more vigilant of my carelessness when I'm drugged like that. I seldom take the Ativan. It is prescribed for the few times that I get anxiety attacks. Admittedly I was a bit anxious before the procedure and that was also a reason I took it. 

Live and Learn!

Wednesday

Leukemia and Burning Man

Today I read an article by Joslyn Hamilton about why she would never go to Burning Man. I wanted to make a comment but, just like many things, one must sign up in order to respond and I got frustrated with the process. So, since I already had my comment created I am posting it here because of it's relationship to my diagnosis. If you would like to read the post I am referring to, you can find it here:

Why I Will Never Go to Burning Man

(And I would be happy if you want the author or commenters to see this post, you can make my life easier by posting a link to here)

Here it what I wrote in response to Joslyn's article (and some of the early commenters) :


All the points brought up are the same reasons I used to say that I wouldn't want to go to Burning Man... and then some. I'm old (67), poverty stricken, and have Leukemia.

I would like to point out, however, that it's clear a person cannot make a judgement on something about which they do not know. Yes, yes... but here I go anyways....

We presume desert is bad, camping is yucky, bathroom facilities are limited, etc. etc. all based upon limited sources of info. Ever since my son first started to go to Burning Man, being the nosy Mom I am, I have investigated and formed many opinions about the event.

It's HOT
It's DUSTY
It's NOISY
It's CROWDED
It's WEIRD (okay, wait... I like weird)
It's DIRTY
People DIE there!

Yup! All of those things, and more.

As the years have gone by and I have learned of the many options, I've come to the conclusion that even for me, Burning Man might be an "experience". What my take on it will be... I don't know.


It's like trying some rare fruit or vegetable for the first time. You don't know until you taste it! Without really investigating beyond the barriers one has created, one cannot know the flavor of the place.

A few things I've learned over the years of my son's "sabbaticals off the grid":

You can take your own bathroom type facilities with you.
You can take your own "hotel" with you... vis a vis RV.
You can take your own cuisine with you.
If you are used to others providing all that stuff for you and you can afford it, bring your staff along and you will have your daily needs met.
You don't have to go hang out in the crowds.
There is plenty of room to be by yourself. They playa is BIG!
There is even plenty of quiet space if you don't wish to be bombarded with music. The playa is BIG!
You don't have to take drugs or barter.
You don't have to convert or have a spiritual experience. The ones who are fanatical about it are just like the fringes of other belief systems in "regular" society.
If you behave yourself and live wisely, your chances of dying there are less than at home. Emergency medical care is available.
Like any vacation experience you will come back with some new impressions in your memory banks.
Your take on it will be based upon your own personal conceptions. You can enjoy yourself or not. It's your choice.

Let me qualify all those statements with the fact that I have never been to Burning Man, so I really don't know exactly what it is like. So, my comments about it are just about as valid as those of  Joslyn Hamilton's. Though, I believe we are both entitled to our beliefs.

My mind is now changed enough that it's on my Bucket List. In fact, it's just about the only thing on my list.

If they had a "Make a Wish" foundation for adults with cancer, I would sign up and go to Burning Man with all the necessary accoutrements to make my stay there enjoyable.

Enjoying myself is a choice I will make when I get there. I can always leave if I want to.

One last thing. Without understanding the cultural history of burning an effigy in a tribal situation, one might not "get" why burning the man is significant.





Tuesday

Second Bone Marrow Biopsy


Bone marrow biopsy went like a charm. Even the novacaine didn't bother me. The Oncologist shoots some of it into the periosteum as well as surrounding tissue. Once I'm numb he goes in with his "drill" to suck out a piece of bone. Another part of the procedure is to suck out some "baby" blood. That which is produced in the marrow before it goes out into the bloodstream.


He got the blood, including a blood clot (don't know if that's important) but it took forever to twist in there and get the bone chunk he wanted. The only thing I felt was a mild shaking of the table. Or was that me? 




I asked my doctor if next time he does this, we can videotape. I see so many youtube videos where people are in terrible pain. I want folks to know there are doctors out there who can do it much more gently, and in my case... painless!


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Note: both photos are from the internet and not my own.