I, too have been fighting HCL, and for all practical purposes, am now statistically deceased. Yes, you do have to fight this. As a matter of sharing my story, I will tell you that back in 1998, I started beginning “not feeling well.” I could not tell why, and had assumed that it was the smog from the city. I lived 21 miles out of town, was professionally-self-employed, and worked out of a home-office; only getting into town once a week to drop off reports and pick up pay checks. (I lifted weights most of the day, as every time I would walk past my home gym, I would hop on for 20 minutes or so. I weighed 155 lbs. and had a 31.5 waist, 50ish. Later, my primary figured out I was burning 4,000 calories a day, and, I WAS NOT USING STEROIDS OR ANY OTHER DRUGS). In 2001, I took time off from work to paint my house, then I moved out into the wilderness, 325 miles from the closest hospital. A rural clinic and dental clinic were 80 miles away.
I felt great! Like a new man! Then, in 2005, I woke up one day and fell straight out of bed. I felt terrible. (Still lifting weights, but had since retired and spent my mornings fishing for breakfast at the local lake, playing in my garden and other stuff to keep myself busy.)
To make my long story short, I drove that 325 miles to the closest hospital, where I was neglected for almost three years (lost my business, my home, and my finances (no diagnosis, yet). Of course they found all kinds of things wrong with me, like a childhood broken bone, multiple lypomas (neoplasms?), severe arthritis, and every other “old person’s” illness/disease they could lay on me.
One day, I even gave my doctor a #10 envelope and asked that it be signed. What was it? “My vacation request!” “What are you crazy, you don’t work here!” “I’ve spent more hours in this clinic then you have!!” Anyway, I was told it was a good joke and time to leave. I said, “I’m not leaving, I want you to call security and have me arrested for trespassing, disturbing the peace, and disorderly conduct!” After a few more words were shared, I said that I wasn’t leaving because I was still sick. I DON’T FEEL GOOD! “THERE IS NOTHING WRONG WITH YOU!” (PS-They used to take 16 to 32 tubes of blood from me, each time I went into the clinic.) I AM SICK! I was told to come back the next day for a Hematology consult (which was on a Thursday).
I showed up for my hemo appointment, which took a 10 second glance at my labs and a “come in at 7am, tomorrow for your hip biopsy; which I did; and, on Monday, I started my 40 hour cladribine drip (the only side-effect was diaharea); then a month later, the same thing with the same chemo (the only side-effect was constipation). Of course there were other side effects, but of no value sharing here.
I had a rash, too. Its called shingles (from chicken pox, when I was a kid). I also had a DVT in my left leg, a pulmonary embolism, two dried blood clots on my brain (yes, they hooked me up looking for the squirters and didn’t find them); several heart attacks (that I stayed home and suffered with). My oncologist praised me for digging my heels in, saying I would not have survived the 2008/2009 flu season, as my counts were all down to zero.
HCL is a condition where your body tells itself to make from the 500m blood cells it produces each day, reds, whites, and plattlets. The problem is, that most of the cells produced with HCL are duds, and they look fuzzy under the microscope (fuzzy look like hairs, so they call it HCL). You need red blood cells to oxygenate your body, whites to fight off infections and plattlets to tell your body to start the healing process, like from a cut (it is the timing of it that counts). To have low counts means, you are coming out of remission. Your body can’t fight wars without the right amount of soldiers.
It is my opinion, that if you had a secondary cancer, but were receiving chemo for the HCL, nobody would know about it, initially, due to your receiving chemo. The HCL, in itself, is “the” cancer, it does not bring on another. You could have more than one cancer, but, the HCL has nothing to do with it. Don’t beat yourself up on this. I have been cancer free since 2011, and have beat the odds regarding recurrence. Which means nothing, because I could come out of remission over-night. These are the facts. Yes, I was sick. Yes, I was very sick. Yes, I was once even in denial. This has brought me the worst feelings in my life, but, I have also had the best feelings, too. All I do is try to move on.
The only real side effect of any consequence, is chronic fatigue syndrum. And, it is hard to beat. If my doctor was able to prescribe medications and dosages that would give me optimal health, they would. But, my doctors don’t work for me, they work for the insurance company. I have nothing to say about it. Their hands are tied and they cannot treat me the way they were trained to treat me. So, I have no quality of life. I have been bedridden and housebound for over 10 years, and all I can do is suck it up.
PS-The neulasta shot you got after chemo was designed to kick start your white blood cells (I self-administered this shot both times 24 hours after I had chemo). If your white blood count does not rise, you cannot fight infection. This is what the shot is for. It puts a poison in your body, to force you to fight it off. If it does not work (meaning you don’t make white blood cells), you will die. I did not write this note to scare anybody. Please educate yourself as there are many places online where you can get information. I pray every night thanks for my life and always ask to help others understand and pull through with this and from all cancers. I will respond as I can to anybody who writes. Everybody needs empathy. I refuse to be pulled into a pity-party! Merry Christmas and Happy New Year! May you all live long, meaningful and happy lives, NO MATTER WHAT!