January 1996
Hi!
My name is Li(sa) Sparks, and I am a 26-year-old graduate student at Kansas State University. I became a resident of Kansas earlier this month so that I can qualify for financial assistance with my medical bills, but my heart still belongs to Georgia.
I am currently finishing a Masters of Science in Student Counseling and Personnel Services (to work with college students), and in the fall I will start a Masters of Arts program in Sociology. As you might fathom from my academic interests, I like to help people, which is one of the major reasons I started a web page.
People need to benefit form my experience so they don't run into the same problems I did. I have a section on choosing the right doctor because of what happened to me.
I started itching in May and it got progressively worse as the summer wore on. I figured I must be allergic to something (and as it turns out we did find an allergy to the bug spray they used in my apartment), and when I returned from a month-long vacation in august I went to the student health center.
I also had a 100 degree fever for three days and a cough. I was told I wasn't sick, that 100 degrees is not a fever (my normal temperature is lower then 98.6), and basically made to feel I was wasting the doctor's time. Yes, I have filed a complaint with the health center since my diagnosis. Not because I want something horrible to happen to the physician, but because someone needs to make sure this doesn't happen again. College students, especially freshmen, are very impressionable and if you tell them they aren't sick a good percentage of them won't go back. This is dangerous.
In any case, after another two weeks of itching 24 hours a day I decided the man was full of it, and went back. I insisted on being assigned to another doctor. This time I wasn't turned away.
We changed all my soaps and deodorants, etc., to make sure that it wasn't an allergy to a fragrance in detergent or something, we used lotions to make sure it wasn't dry skin, we tried drugs to stop the itching, we ran blood tests, and we did a chest x-ray. I was in the health center at least once a week for 3 months. In the midst of all this a lump appeared in my neck the week of my brother's wedding in October.
The lump hurt at first, which was supposed to be a good sign, so I went home for two weeks and returned. At that point it didn't hurt anymore but seemed to be bigger. We gave it another two weeks just to be sure, and then I was sent to a surgeon to determine what it was. Dr. Klingler (a wonderful man) decided to do a CT Scan to determine if it was cat scratch disease (highly unlikely since I hate cats) or Hodgkin's Disease. The CT Scan was inconclusive and we scheduled a biopsy for December 1. I spent a lot of time on the 'net reading up on things, and I knew in my heart it was Hodgkin's before the biopsy. It was a prefect match. Especially since I had started having cold sweats in the day and night sweats.
On the 5th (the first was a Friday) it came back Hodgkin's. The next few weeks were whirlwinds of scans and doctors appointments.
I took incompletes for my semester and spent the next two weeks driving back and forth the hour to Topeka for a gallium scan that took 5 days and for the bone marrow and all that.
It came out stage IIB, with the nodes in my chest and right shoulder affected.
I started chemo on December 20 with the MOPP. It didn't make me sick at all which was great. The hard part for me was the procarbazine food restrictions. No cheese and chocolate over Christmas?!?!?! That was hard. And New Year's too. But it was good to get treatment started. At least then I could plan my life.
I am definitely staying in school since I graduate this May, although it did mean that instead of moving to Texas this summer I'll stay here another two years to maintain my doctor relationship.
Friends flew me to Maryland for a week at New Year's and I think that was good for all of us. I was still on the drugs when I got there, so I walked really slow (my normal, not-sick, pace is really fast so this was the biggest shock to them) and got tired easily, but otherwise I was my usual self. Since they are all taking turns flying out to help me with treatment sessions, it was good for them to see what to expect. By the end of the week I was doing better because I was off the drugs, and that was good for them to see too.
My friend Tom Meixner had leukemia in '94 so he has been great as far as information goes. I can tell him anything and he's already been through it. He tells me that my hair should start falling out any time starting the end of this week.
Joy. I'm not really upset at the prospect because I know it will grow back. I just wish I knew more of exactly when and how so I could plan. Oh well. I now have this fabulous hat and scarf collection! =) See, there are advantages to everything!
I started the ABVD on January 19th. A little more nausea than the MOPP and a little less fatigue. We're doing three rounds each of that and the MOPP, alternating each month. In June we'll do another gallium scan to determine if we go through the summer or not. Either way, one month after we're all done I'm having a party on the Texas beaches!
So, that's my story. I've received excellent
care from everyone I've seen post-august. I trust Drs. Petrik
and Ecklund completely. I'm not looking forward to 6 months of
chemo, but at least it means that I get to see all my friends
as they take turns flying in. I have no doubts how much I'm cared
about.
Now, if I would just start losing the weight they promised rather
than putting it on...! =)
Thanks for listening.
Your friend in cyberspace,
July 1997
Well, here is the short, very abridged version
of what happened next (a lot of which is in better detail on the
'health status' page).
I had almost a full year of chemo, with my last treatment being
October 17, 1996. My veins are now gone, seeing as I had 4 treatments
in my veins before I got a port.
Let me just say this as loudly as I can: GET
A PORT! I promise you that you will not regret it. It makes
treatment soooooo much easier. But then, that is why I have created
a section on ports….
Other than the vein problem all has
gone pretty well. I have had a little bit of depression in the
last few months, but that is not unusual in cancer patients.
Sometimes survival is more difficult than treatment. As Hodgkin's
patients, we are the first large group of cancer patients to survive
more than die. Thus our doctors are learning about survival from
us. I'm glad to be of help! =)
I think that is all for now, please see the recommended links above for more information. Good luck and health to you all!
Last updated July 19, 1997, copyright 1997.