Life With NHL

How I found out
I have cancer


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2nd Rituxan

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Rituxan # 3


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Phantom Menace

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The Clot !

Chemo Man

Hot Wheels

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Clot, Part Deux !

Two Cops

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'Nudder COP

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Tooning Up

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2 Years

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Rituxan Shock

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Going, going...

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PET Detective

Rituxi-CHOP 4

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Ganging Up

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More time in the hospital

          A day later, I was getting blood drawn so that a doctor could assess my condition after the trip. 

          The day after that, the doctor looked at my blood results and examined me and put me back in the hospital again to recuperate from the trip and to get started towards a treatment for my cancer.  

          Through some circumstances, I landed in U of M Hospital.  They began to draw blood and make plans to do more biopsies and get some more bone marrow and all the same types of things that went on in Knoxvilleís Fort Sanders Hospital.  Doctors, interns and nurses all came and went and poked and prodded and drew blood and asked to hear the story from the beginning over and over and over incessantly.

            The morning after I was admitted, the U of M Hospital business office called me in my room to inform me that they didnít take my insurance (CIGNA) and that I was basically on my own financially.  I made the decision to stop everything in itís tracks, get transferred to a facility that DOES take my insurance, and start over one last time.

            I'd gone through weeks of testing, prodding, poking and all that in Knoxville.  My arms and hands were roadmaps of big purple bruises and scores of needle marks from dozens of blood draws, IV's, transfusions and such.  I looked like the worst needle junky in any movie you might have ever seen.  

            Now, U of M wanted to start the whole testing process over, and I just knew that in short order I'd get transferred to another facility because of the insurance thing and that new facility would want to start over yet again.  Everyone likes to have their own test results.  I looked at my arms, thought about the Cat scans, X-rays, and all the rest and said, "No way I'm doing this more times than I have to!"  So I decided to skip the series at U of M and get the hell out of there.  I let my support team know my intentions and they went into action.

            My support team, you ask?  Oh... Yeah...  Real quick...

            By that time, I had assembled my support team.  Actually, they pretty much assembled themselves, taking on the responsibilities they are most familiar and comfortable with.  My support team consists of my family and friends.  My sister Candy has been involved in the Insurance business for many years, so she's all over that.  My sister Trudy has a medical background and has a nose for sniffing out any kind of hidden benefits and money from social work type areas, getting through bureaucratic red tape and getting things accomplished in short order against tough odds.  Mom's there for me emotionally and to help coordinate schedules, get me around, find things I need or just crave.  My step-mom is my other emotional and home support team member, cooking meals, doing laundry, shopping for me and taking care of my general home needs.  My friends give me much needed encouragement.  Together they are a group of people that are absolutely indispensable to me.  The Knoxville doctors were right - I couldn't do this without them.  I have no way to ever thank them enough, and I love them all.

            So, anyway, my support team went into action and I ended up in St. Josephís Hospital later that day, but there was a bit of a snafu.  It seems the doctor at U of M had not intended to let me go as soon as the nurse did.  I ended up in the waiting room of St. Josephís for 3 hours while Candy worked with the 2 hospitals to clear the way to get me admitted.  Meanwhile, I was again wasting away without care till my head literally bobbed on my neck like one of those drunken little spring-headed dogs in the back window of the car in front of you at the stop light.

            The guy working the admissions desk seemed to have had his job all of about 10 minutes and was totally lost beyond being able to look at a piece of paper we didnít have to get a number we didnít have to put into his computer to make the wheels in his world turn and get me into a bed.  No paper, no number, no wheel turning.  The poor guy was at a total loss for what to do about it.  So I waited 3 hours while Candy made phone calls, paged doctors and nurses, made demands and got out bigger sticks to get someoneís attention.

            Finally a nurse came out and, with a few harsh words to the admissions desk, wheeled me to a room at the end of a hall, put a gown on me and put me to bed.  From then on I had nothing but A-#1 treatment from everyone there at St. Josephís. 

            At U of M I felt like a number and a lab experiment for all the wanna-be someday doctors drifting in and out of my room along with the real doctors and nurses, poking, prodding, listening to heart and lungs, sitting me up, lying me down, rolling me over, sticking me with needles, asking me questions I couldnít hope to answer, like why had I been prescribed this particular drug?

            All that changed at St. Josephís and I DO mean noticeably.  I was VERY well taken care of by everyone there and I felt it from start to finish.  They cared about me personally and it showed.

            And they did something about my discomfort and needs too.  For one thing, they got that big belly off me with a drainage hose.  I heard they took 7 liters out.  What a relief that was!  And they worked on getting the balloon legs, feet and toes to start going down with drugs to make me urinate it off more quickly.  With every single day that went by I could feel myself getting stronger and better.  They were turning me around to the positive in no time and it felt great.  My appetite increased to the point where I was not only eating everything they brought me, I was eating anything else I could get someone to bring me from the cafeteria or vending machines, like donuts, strawberry shortcakes, ice cream, chili, salads, anythingÖ I was hungry!

            The next thing they did was wheel me down to a little surgical area and take a couple of lymph nodes from my left groin area.  That was on Friday morning, 11/9/01.  The Oncologist explained that there are many types of NHL and that he needed to find out precisely which one I have so that he could tailor my treatments to it in particular.  He explained that the biopsies would be back on Monday and he'd make a plan for my treatments then.

            He also let me know that the information obtained so far showed that one of the aspects of my particular NHL indicated that I could start treatment that very day, Friday, 11/9/01, so I got my first treatment.  It's called Rituxan.  First they gave me a couple of Tylenol, then a shot of Benedryl through the IV, then they start dripping in the Rituxan just a little at a time and then slowly increase it.  When they increased it though, I suddenly got so sick it was scary.  It went like this: I feel kinda warm all of a sudden... 30 seconds later I'm sweating like I just ran the marathon, I'm gonna upchuck everything I've eaten for the past week, then I pass out.  Just that fast.

            Well, as soon as I started to feel warm, I told mom and she said to hit the nurse button so I did.  The nurse came right in, took me off the Rituxan and hit me with more Benedryl through the IV.  I think I was out for a couple of hours, though the Benedryl kept me pretty groggy the whole time.  They increased the dosage as we went along and even went past the amount that made me sick the first time and I felt no other discomfort at all.  Maybe it was just the initial shock of the first time that my body had to deal with it.  I'm interested to see what happens on Friday when we repeat the treatment.

            On Monday, 11/12/01, the biopsies from the lymph nodes they took came back and the Oncologist told me that he now had a handle on which particular NHL I have.  It's an indolent (slow growing) lymphoma and because it is in stage 4 (in my bone marrow) he believes I've had it for some time now without knowing.  He also has a plan for treatment, and off we go.

            At this point, the doctor's plan is to give me the Rituxan 4 times, once per week, and then move on to chemotherapy to continue the fight.

            The only downer the whole time I was at St. Joseph's was a visit was from a counselor that came to help me deal with the stress of finding out I had cancer.  The poor guy probably has to deal with a lot of people that are really bummed out at the news that they have cancer or some other debilitating disease.  I'm sure some get pretty grim news about their particular circumstances and chances of survival.  It's gotta be a tough job.  I wouldn't want it. 

            He offered me antidepressants, and told me there was no shame in using them.  I declined, as Iím not depressed.  He didnít seem to believe me, and we speculated as he left that he was convinced I was in denial.  We (my support team) had a little laugh about that, and I suggested that he might need the antidepressants himself.  Before he left, I let him know that, while Iím not depressed now, if it comes up later, I will take whatever measures are advised to combat the problem.

            A nurse said she had some videos for me to watch about cancer as well, so we watched one.  It was about 20 minutes long and one of the most depressing things I ever saw.  There were these poor people that were angry, depressed, cried, and a whole range of downer emotions over the fact that they had cancer.  And they wanted me to know that itís normal to feel those things.  All I could think of was that Iím glad I donít.  I let everyone know that I expected during the course of my disease and treatment that I would encounter ups and downs, good days and bad, and so forth.  I consider them part of life.  I will deal with them as I encounter them as best I can and use whatever tools are available and recommended as needed.  When the time comes.  Not yet.

            I declined to watch any more videos unless they were informative videos that could tell me what to expect from a clinical standpoint of the cancer or chemotherapy or something like that.  Tell me about T-cells or B-cells, tell me about treatments, but save the ďlife with cancer is the most terrible thing that could happenĒ speeches for someone else who already believes it.  Iím making other plans to stay as upbeat as possible and live a long life kicking my cancerís ass rather than the other way around.  If it doesnít go that way for me, at least Iíll have given it my very best effort.  Iím not giving up at the outset of the battle.  Iím at least going to make a damn stand against it before I give in to a dopey smile that comes from a handful of happy-pills.

            Anyway, the rest of my stay at St. Josephís was great and they got me stronger by the day and in a week I was back home and walking around the house without using a walker or wheelchair.  That was 11/12/01.

            Next: Home again and feeling better