Leukemia's little dance with me

"Leukemia is cancer of the blood cells that starts in the bone marrow." Doctors have been telling me for about 10 months that I might have leukemia. CML was the main suspect. It has been a long year.

It all started with flu like symptoms, leg pain, wheezing, and a low grade fever that lasted months. I asked my Homer Simpson like doctor for an H1N1 test, but he said I wasn't "sick enough". He didn't even examine me. Blood tests were taken and a high white blood cell (WBC) count was found, (leukocytosis). I was sent to an oncologist at Strong hospital, and so leukemia's little dance with me began.

Next came a parade of doctors and exams. Within 10 months I averaged one doctor's visit per month, had 6 series of blood tests, a CAT-Scan, an ultrasound, an endometrial biopsy, a bone marrow biopsy, and a partridge in a pear tree. Why didn't my oncologist tell me from the start that the bone marrow biopsy/aspiration was the only true test to diagnosis leukemia? I would have had it sooner!

About 2 weeks ago I walked into Strong's Wilmot Cancer Center and took a seat close to the door. I never sat that close to the clinics entrance before, but this was D-Day; the day of my bone marrow biopsy results. The day I would FINALLY have a definitive answer as to whether or not I had leukemia. I wanted this appointment to be over with quickly.

Someone wheeled a woman in a wheelchair near the seat next to mine. She stood, walked a few steps and plopped down into it. She was thin, pale, shaking, and was wearing a scarf that didn't fully cover her bald head. I figured that she was having chemotherapy treatments, or had just finished.

Another lady came over and sat down to my right. She had good color in her face, but less than an inch of hair growth on her head. She smiled easily and had a spring in her step. I surmised that she probably had finished chemo treatments with favorable results.

I sat between these two unique ladies wondering if I would be joining their exclusive club that day; a club that my mother had once belonged to. My mother suffered with cancer for 9 years. I'm approximately the same age that my mother was when she died of cancer. This was all too real to me.

Time passed. Both ladies were called before I was. 45 minutes after my scheduled appointment I was finally called into the clinic. I followed the aide inside. A quick right turn, sat in the chair, stuck out my arm for the B.P. cuff, all before she could finish her instructions. I hated that I knew the routine by heart. I was weighted. Yay, another half pound lost! Then I went on to the examination room. The examination room was the same one that I had been in several times before, but it seemed so much smaller now.

I was a bit nervous, but not nearly as much as in the past several days. A relative who sometimes accompanied me couldn't make it that day. I was glad. I wanted to hear the news alone. In the beginning I didn't tell anyone that I might have cancer. Eventually I told a relative who has cancer and could relate. I guess I just didn't want to be pitied or regarded differently. Cancer or not, I am still me.

15 minutes later my oncologist entered the room. She blurted it out. "Your bone marrow biopsy was negative." "No leukemia? I asked. "No leukemia and it looked normal. No disease. You may have had an infection which elevated you WBC count. It has reduced, but still is slightly high. I believe that you have a high normal." she explained.

Fortunately I no longer had to see my oncologist. I said good-bye to my oncologist forever and hoped that I would never see the inside of a cancer clinic again. It seems that leukemia's little dance with me was finally over. I was one of the lucky ones, but I was painfully aware that it could have gone another way. The older I get the more random things like this seem.

You'd think that I'd feel happy, or relieved, but I didn't. I felt angry. Very angry! This all started with flu like symptoms including a wheeze and fever. When I went to my Dr. Homer Simpson during the H1N1 outbreak he refused to test me for it. He said I wasn't "sick enough". He should have at least given me a checkup. Apparently I did have some kind of virus that affected my lungs. Later it showed up on my CAT-Scan as cloudiness in both lungs. The conclusion note said that it was probably an "infection or asthma". It also showed up as a high WBC count. If my doctor had been on the ball, he would have diagnosed it and I would have avoided 10 months of hell. D'OH!

I can't even talk to my counselor about my anger. My counselor has worked with my doctor in the past. Every time I say something negative, he defends my doctor. I canceled my next session. Repressed anger in me tends to turn into depression. What do you do when you're angry or frustrated? How do you let off steam?

Currently I'm dealing with many feelings that I'm trying to sort out. I'm trying to get some prospective on things. I also still feel a connection with leukemia patients that I don't want to quickly disconnect from. I wonder if there is some purpose for this connection. In the next few months I have to follow-up with some doctors concerning medial crap including a few exams. I'm not really concerned. I figure that if the average person my age had all the tests I've had, they would probably find a few things wrong with them too. Hopefully nothing significant will be found.

So that's a synopsis of leukemia's little dance with me. It's been odd, eye opening, heartbreaking, frustrating, all too real at times. But it hasn't been fun.

Again, I want to thank all those who have left me kind comments, sent prayer, good thoughts/vibes. Thanks so very much for caring! I appreciate it!

By the way, a good book on the subject is, "100 Questions and Answers About Leukemia" (second edition) by Edward D. Ball.

Pondering The Pussy

CAT Scan test results are in, and I'm pondering them. The good news is that I'm in no immediate danger. Nothing horrible appeared. The bad new is that they found one or two new things that may, or may not be serious. It's unknown at this time.

Nothing conclusive. No diagnoses. Not one definite answer to date. And they have not ruled out that horrible disease that I could have. It is very frustrating! I have to have more tests, and see 3 doctors now, starting on Thursday.

Are you tired of all this? I sure am! I hope that what I have is curable, or at lest highly manageable. I also hope that they get to the bottom of this soon. Good thoughts/prays are always appreciated.

What's New Pussycat by Tom Jones <-- Click on this

Personal Update - Incompetent Knucklehead!

Incompetent Knucklehead! - I had a telephone interview with my Food Stamp social worker. She said that she had received my paperwork, that it was in order and I would continue to get Food Stamps. That was a month ago. A few days ago I got a letter from her stating that she had never received my paperwork, and that my Food Stamps will be cut off on July 31st. I have a receipt for the paperwork and mailed a copy to her. I hope it sparks her memory. It would be nice to have money for food. Please say it with me... INCOMPETENT KNUCKLEHEAD!

Inspection Time - Every year we have inspection at my apartment complex. I save way too many things. Where did all this junk come from? I'm trashing most of it. Clean, clean, clean. Anyone want to dust?

My Mysterious Disease (The Plot Thickens) - My doctor found a hard spot in my tummy area when he examined me. Last night's Chinese dinner? I wish! The spot is sore and I've been aware of it. My CAT SCAN is scheduled for Wednesday July 28th. Please pray/send good thoughts that it's something very minor and curable!

Cell/Web Telephone is OFF - I didn't renew my Straight Talk phone this month. It updated itself and screwed itself up. At first I couldn't get Face Book, then Twitter. Now I'm using my free government Safe Link phone instead. Hm, I wonder if Pres. Obama is listening in on me? He would hear me calling my social worker an incompetent knucklehead. Because my not so smart phone is off, I won't be online as much. I'll post occasionally on the library computer, but have to use it primarily for job seeking. My counselor also wants me out and about more. Hey, it's summer! A great time for being outside. I'll still try to keep in touch. I don't want to lose you folks so don't forget me.

One Big Cucumber! - Does it look suspicious when a woman buys one big cucumber and nothing else at the supermarket? Um, just wondering. ;)

photo credit

Quick Update - My Aunt and the Bear

I've been busy this past week. My Aunt has passed away. It was complications due to a fall which injured her hip. I have been speaking to relatives on the phone, plus went to her funeral. I'm sure that I will write more about my dear Aunt later on.

I have also been studding the Bear of a disease that I think I have. I asked my doctor why he was so concerned about my blood test, and he finally said that it could be that bear of a disease. I will see the specialist in about a week, and possibly be diagnosed. I hope my self-diagnosis is incorrect. The specialist wouldn't see me if it was nothing. So I know that I have a disease. My counselor is going to give me a dry run of the consultation. I'm am frightened of this whole thing. My mother died at the age of 52 of something similar. I'm am a few years younger. I'm not the most organized person, and need to get my questions in order, so my counselor will help. I will have further tests when I see the specialist. I was going to keep this all quiet from my family until I knew for sure, but it slipped out. A relative will be going with me to the same clinic that treated my mother for 10 years before she died. The same clinic that might be giving me a similar diagnosis. It's all very frightening!

Quick Update - Spring?

SRING IN "ROCHESTER? - The news said that the East coast is getting slammed by severe rainstorms and floods. Not in Rochester. Yes, we are getting a good rainstorm, but nothing out of the ordinary. Flooding in low lands. In fact it seems more like Spring here! We recently enjoyed 7 days of sunshine in a row with temps 48-61. More beautiful weather starts Tuesday. Yippee! If winter isn't over, then this is one heck of a nice respite! MYSTERIOUS DISEASE UPDATE - I have a copy of my CBC, and think I know what it means, thanks to the net. Not good, but no immediate danger expected. I will see the hematologist the first week in April. I expect him to comfirm it. More waiting. Maybe waiting is good because it helps me to come to terms with a bear of a disease. BORING - Sorry that my updates are so boring. I can't wait until the festivals start! They are always fun! I'll get out + about, and tell you some nice things instead of the same old crap. Thanks for sticking around and caring! I really appreciate you folks!

A Bit Blue Today

The hematologist who was suppose to call regarding interpreting my CBC hasn't called yet. It's been about 6 weeks since my CBC was taken. I informed my doctor, (Homer Simpson), Apparently I don't have a very rapid growing disease/infection, or I would be hospitalized by now. Sheesh! I still think it might be that bear of a disease. I've been reading about it. The treatments are painful, and barbaric. Apparently Dr. Josef Mengele, (nazi doctor notorious for his cruel experiments at Auschwitz), dreamed them up. I'm not going to see my shrink this week, I've rescheduled. I don't want to talk about all this latest crap with him, at lest not until I know what's wrong with me. However, part of me dosn't want to be diagnosed. If i have this disease it will change my life, and not in a pleasent way.

Oh, What a Relief!

A snowstorm is not just a snowstorm. So far this winter has been mild, and almost snowstorm free. In general I'm glad for that, but there is something about a good old-fashioned snowstorm like we are having now. Living in Upstate, NY, I've seen them my whole life. Having one is a sign of normalcy, familiarity. It's the order of things around here. Snowstorms bring memories of childhood - sledding, angles in the snow, snow men, with hot cocoa and cookies after. I've been so preoccupied with the possibility of a looming disease that a snowstorm is a nice reminder of normalcy, and pleasant childhood days. So I look out the window and smile as the fluffy, clean, flakes, floating down. Then wrapped up in my warm flannel nightgown, I eat hot soup in my comfortable lazy-boy chair. Later I will have traditional hot cocoa. All is well. Normal. At lest for today. It's a temporary respite from my worried mind... Of course it dosn't hurt that I don't need to drive in this mess! ;)

Quick Update, plus Huge Storm Coming.

Quick, choppy, update on cell instead of using library computer because need food etc before huge storm hits Thus-Sun. TV says maybe worst in 2 yrs! Only 2nd notable storm this season...UPDATE FROM LAST POST-Left message for docs boss (not typical of me), said it's been 3 weeks since odd CBC results, and I won't get interpretation of it for a mo. Ek! Next day my doc called on his day off! He had called a hematologist who will give me a free consultation. Finally! Guess my doc got chewed out by his boss! Now waiting for hematologist to call. Busy studding disease I think I have. I'm tring to prepare emotionally for worst news, and to have some good questions for him. Prayers/good thoughts greatly appreciated!

My Doctor, Homer Simpson

My doctor acted like Homer Simpson today. As you may recall I have been worried about my CBC test results. I have had a high white blood cell count, low grade fever, and some other symptoms for months now. The first CBC test also indicated some possible abnormal cells, but was discarded. So I took another CBC blood test. My doctor was supposed to consult with an hematologist, and let me know about it today. I have been going crazy with worry for the last 3 weeks! I only slept one hour last night.

.

I found out today that my doctor hadn't even looked at the new CBC test! As we sat waiting for it, he asked me about my symptoms, fever, and pains that I have been having. He told me that the fever wasn't all that high, and that my symptoms were due to depression. In other words, all in my head. I reminded him that I have been in depression for years, but never had a fever or other symptoms until recently. In fact I have only seen him once a year until now.

.

The nurse brought in the CBC result that she just got from the lab. Homer, um, my doctor looked over the results and said that my white blood count was still elevated, and possibly some abnormal cells. He said that it was "cause for concern." Well, DAH!!! I already knew that from the last CBC. He was suppose to consult the hematologist, and tell me his findings today. Now I have to wait another month until he does so. Anyone have some Valium? Well, that's a free clinic for you. Slower then molasses. Um, is there a hematologist out there?

.

Related Posts: My Mysterious Illness... AND... Hey Doc., What's My Illness?

Hey Doc.,What's My Illness?

(Written on my cell. Hope it comes out ok.) Yesterday I called concerning my CBC results. The nurse said that one reading was high, and another was to low. She said that she did not know much about it, and couldn't interpret it. Of course I was worried. Today I talked with my doctor who said that my white cell blood count was still a bit high, but not as high. There was one or two possible abnormal cells, and he would have a specialist look at them. But when he called the lab, they had discared my blood. They do that after a certain amount of time. So I have to have the test done again. Boy, I hope if there are any abnormal cells that they show up again! My doctor will give me the results in three weeks when I have my apointment. UG! Does anyone have a valium?

My Mysterious Illness

The following has been condensed for brevities sake...

.

I've had a low grade fever since June. I have never had a fever, unless I've had a bad cold or flu until now. My doctor tested me and found out that my white blood cell count is very high - 18,000. Thursday I had my blood drawn for another test. If this test is positive, it will mean that something is definitely wrong, and I will have an idea as to what the disease is.

.

I got on the web and looked at the possible reasons that I could have an 18,000 WBC with fever. My eyes went to the worst case scenario, (of course), but when I saw it, it made perfect sense.
.

My intuition says that I have the disease, but I hope that I'm wrong. It's a bear of a disease that I couldn't wish on my worst enemy, (if I had one). :) I'm eager to get the blood test results. I want to know exactly what I have ASAP, but what then? By the way, I still don't have medical insurance. I go to a free clinic.

WHO Warns Of Severe Form Of Swine Flu (H1N1)

The following is from the New York Times. Here is the first part -

"Doctors are reporting a severe form of swine flu that goes straight to the lungs, causing severe illness in otherwise healthy young people and requiring expensive hospital treatment, the World Health Organization said Friday.

Some countries are reporting that as many as 15 percent of patients hospitalized with the new H1N1 pandemic virus need intensive care, further straining already overburdened healthcare systems, WHO said in an update on the pandemic.

"During the winter season in the southern hemisphere, several countries have viewed the need for intensive care as the greatest burden on health services," it said.

"Preparedness measures need to anticipate this increased demand on intensive care units, which could be overwhelmed by a sudden surge in the number of severe cases."

Earlier, WHO reported that H1N1 had reached epidemic levels in Japan, signalling an early start to what may be a long influenza season this year, and that it was also worsening in tropical regions.

"Perhaps most significantly, clinicians from around the world are reporting a very severe form of disease, also in young and otherwise healthy people, which is rarely seen during seasonal influenza infections," WHO said.

"In these patients, the virus directly infects the lung, causing severe respiratory failure. Saving these lives depends on highly specialized and demanding care in intensive care units, usually with long and costly stays."

MINORITIES AT RISK

Minority groups and indigenous populations may also have a higher risk of being severely ill with H1N1.

"In some studies, the risk in these groups is four to five times higher than in the general population," WHO said.

"Although the reasons are not fully understood, possible explanations include lower standards of living and poor overall health status, including a high prevalence of conditions such as asthma, diabetes and hypertension.""

Click here to read the rest of this article.

WHO article "Preparing for the second wave: lessons from current outbreaks"

photo credit

Random Ramblings #6

Health Wise

I'm almost over the virus that I had. My sprain is getting better, but taking so darn long. I'm officially out of work. This has caused financial, and depression problems to worsen. I wrote a few blog post drafts concerning the depression, but glad I never posted them. They even scared me. I'm not happy to be alive right now. They say that it is always darkest before the dawn. Well, I hope so, because it's very dark now.

He Was Slapping Her

My asshole of a neighbor had knocked his girlfriend down and was standing over her slapping her. This happened in the hall. I immediately called the police. They arrived in two minutes. By the time the cops arrived they were in her apartment, and questioned them. I could hear the conversation. The dispute was over money, (I think for drugs). My favorite neighbor, and I agreed to call the cops right away if Mr. asshole starts in again. We don't want him getting away with it. (Sorry if my language offends you, but I can't think of a better word for him at this time.)

Rochester Weather - Tornados & Cool

Two tornado's hit the Western N.Y. area not far from Rochester on July 25th. They caused quite a bit of damage in Corfu in Genessee county, and a little in Hilton in Monroe county where they hit. Hundreds of customers lost electricity in those areas. The Darien-Corfu tornado had moderate damage to several buildings and trees and winds ranging from 86-110mph. The path was four miles long and 100 yards wide. The tornado in Hilton caused less damage. It's big news around here since our last tornado in Monroe county (my county) was in 1981.

I've been enjoying wonderfully cool weather lately! We have only had 4 days over 80 degrees (26.6 C) and none in the 90's (32-37 C). We just might break the record for the coldest July in history (since 1871) for Rochester. I just love it! Yes, we have more rain then usual, but it's no big deal. Not much flooding at all.

photo credit

My E.R. Visit

I was injured. No big deal, and the details are boring. Because I don’t have insurance I had to go to E.R. to have ex-rays just to make sure that my bone wasn’t broken. Good news – I don’t have a broken bone! It is just sprain. It is healing nicely, but taking time. I will be 100% again. However, I now have flu symptoms. EK! I hope it’s not H1N1 swine flu. The symptoms are mild so I doubt it’s swine flu, but I might have to be tested. I’m trying to reach the free clinic.

If it is H1N1 I might have to take Tamiflu which might not work because you have to take it soon after first sign of symptoms. My first symptoms were Friday, and my free clinic was closed over the weekend and today. So that is 3 days so far. Darn! I hope it’s just a regular bug. If it is swine flu I will have to stay home 7 days as recommended. I’m not having fun right now.

Well, this all shows the need for universal healthcare, and personal healthcare. I applied for Medicare, or is it Medicaid. I get them mixed up. I'm glad that normally I'm in very good health, and can't wait to get back to my normal state. Although I'm not doing that bad now. Hopefully these are just a few minor glitches.

By the way, George Clooney says "Hi". ;)

UPDATE: Hi All,
Thanks for the good wishes! It's not H1N1, but just a bug. My bone will take longer to heal then I thought. I'm out of work for several weeks. (And my agency called recently.) Crap!

EK! Blog buddy Health Psych has H1N1 Swine Flu!

Unfortunately it is official. My blog buddy Health Psych who at PsychoBabble blog has H1N1 (Swine Flu).

She has been in bed for 12 out of 14 days so far. She says that she has a "raging temperature, muscle aches, headache etc etc" ...The "flu might be milder than expected but it's knocking me around quite a bit."

Please show your support by clicking here and leaving her a message. Please say a prayer (or send good vibes) that she recovers soon.

In my county of Monroe, they have decided not to give us anymore information since they declared it an epidemic here. (No thanks to county executive Maggie Brooks.) We do not know if it is still considered an epidemic. If they still regard it as mild. How many people have been ill, or if anyone has died. It is like a media blackout and I don't like it one bit! I would rather know!

Looks Like I've Been Poisoned

First of all, don't call the paramedics because I'm fine now. It was mild poisoning. LOL! It was not intentional, or I would not be writing this. .

Several days ago I was picking up some trash that was on the lawn. It included a few bottle containers. I brought them into my apartment, and emptied the liquid. Then threw them in the trash. The trash bin is a few feet away from my computer.From there on I had a dull headache and was drowsy.

Yesterday I was out all day, and when I came home I noticed an odd smell coming from my trash can. I pulled out the containers. I didn't do such a good job emptying them because hey still had some liquid in them. One was an antifreeze container. The other was a soda pop container, but had a substance that smelled like antifreeze (engine coolant) in it. Then it hit me. My headache and was drowsiness was gone because I was out all morning and got some fresh air. Apparently the fumes from the antifreeze and other liquid had been poisoning my system, because I had been sitting by the containers often. I immediately removed them, and have felt fine ever since.

Anna Nalick - Breathe (2AM) - Could it be that...

It's not a good day physically (not feeling well), but mentally & emotionally I feel strong. Could it be that we are as strong, (mentally & emotionally), as we believe we are? Could it be that we can accomplish more if we just believe? Could it be that our perceptions of our self's and the world around us matter more then we think? Could it be that having a positive attitude, and trying, and showing up, is the majority of it?

If this post doesn't make sense I will blame it on not feeling well, and lack of sleep, and medication. ;o) But right now I think that I'm on to something. It seems so simple. Could it be that we are the ones who is making life so complicated? Breathe, just breathe...

Have You Heard of Willowbrook?

Geraldo Rivera a hero? Children naked, filthy, neglected, and abused. Robert Kennedy. The state of New York...What do these things have in common? Read "A Willowbrook Legacy" written by my blog buddy Tom of "Sheep and Goats" and find out. Tom has a wonderful post on the subject. While you're there please leave him a comment. You know how we bloggers love comments. ;o)

Heat Wave - Marilyn Monroe & CDC Extreme Heat

Marilyn Monroe sings "Heat Wave" in the movie "There's No Business Like Show Business" (1954)



Rochester, NY has one more day of very hot weather. The prediction is 92 degrees, near record heat.

Here is some information from the CDC on Extreme Heat including heat stroke, and exhaustion. Keep cool!

The Card: A Sign of Dementia?

The following has been altered due to respect, and confidentiality.


A relative sent me a card recently. I will call her Katie. The card was about a special family occasion that takes place every year. This year Katie signed it "Love Granny." The problem is, she is not my Grandmother. She has grandchildren, and might have gotten mixed up, but I think it's more then that. I have noticed a slight decline in her memory for the last few years. Nothing major, but noticeable. Katie is in her late 70's. Her only sibling, (Mag), had dementia and was tested for Alzheimer's disease just before she died. Mag died before the results came back, but it was probably positive. So I'm a bit worried about Katie. I can't call her. She is gone for the summer, and I don't have long distance. At lest some of the family will be with her.

Katie is one of the nicest, sweetest, people you could know. She loves her family, is very caring, generous, loving, very friendly. She is the type of person that you would feel proud to have as a friend. A good, loyal, friend. But time might be taking a toll on her.

As a Nursing Assistant, (CNA.) I know that old age can be cruel. I have seen some people decline physically, and mentally to the point of torture. That's what I would call it. If one human did those things to another, it would be considered torture. I just don't want that to happen to Katie.

Several years ago Katie had a heart condition, and was operated on. If she hadn't had the operation she might have died. But it might have been a relatively quick death. Unfortunately modern science, (medicine), sometimes can be a curse in old age. I hope that when it is her time, that she goes quickly. I hope that she never regrets having that operation.

Please say a prayer for her.