It's Not So Bad

My first chemo session was last Friday. Keith and I met local friends and family downtown at Mac’s for a last cocktail or two on Thursday evening before I’m off the sauce. I made sure to limit my martinis though since I didn’t want to go into treatment feeling crappy the next day.

My treatment went off without a hitch. I was a bit surprised to find out that my port is under the skin, not under the steri-strips covering my incision. So they basically poke through the skin (no biggie now that I’ve done it) to access the port, then go through the series of drugs and saline flushes. First, they give me an anti-nausea injection, which is what has really changed the face of cancer treatment from twenty years ago. Then they gave me a steroid—I can’t remember right off if that is also for nausea, I’m going to have to look in my binder. Then they gave me my four chemo drugs. Then they flushed me, added some coagulant to avoid bleeding out of my port, and I was done in about 3 hours. Keith and I read magazines and watched The Princess Bride—I was astounded that nurses actually had to ask what movie it was when they came in—isn’t it permanently imprinted in the back of everyone’s mind by now, or is that just me? When I got home I slept a bit, but otherwise I felt okay.

On Saturday I was pleased to feel ok, with just some nausea, but I rested while I could. We went to the cheapo movies to see Surf’s Up (don’t bother!) and came home to cook a lovely Spaghetti Pie that Jenny dropped off earlier. I felt mostly the same on Sunday thinking that I would be ready to work on some of my projects on my list on Monday.

On Monday I felt a bit crummy, but the gals and I went on a wig shopping trip. I kept waiting for the “right” one to happen, but in the end I kept making comparisons to bad wigs/hair in movies: Whoopi Goldberg in a blond wig in Jumpin’ Jack Flash, 9 to 5, Tootsie, Wayne’s World, Hairspray. They were all too wiggy, but she ordered one for me to see next week. Did you know that Raquel Welch only wears wigs? We are going to try another place here in town and consider looking further out if necessary. I think I might be more of a scarf and hat person day to day than I thought. I left with a headache because the only one I remotely liked was too small.

I feel about the same today. Some of the side effects are catching up with me now. I have a lack of appetite, but I have to eat anyway, even though I have a dry mouth. My insides are not right, but nobody needs to hear about that. I am fatigued and I can’t seem to get interested in anything for very long. I think some of that is the emotional part of waiting for more side effects to appear: it’s like I am my own lab project for observation. Once I get through this first cycle I’ll know what to expect to some degree which will help me focus and move through it the next time. Thank goodness I am an educator and have this time to deal with it all before school starts up.

Keith takes care of me and makes sure that I eat something. He is also enjoying Asteroids and Shark Week during this time of caregiving. He is downstairs on the wheel now, so look forward to some beautiful things from the kiln for this Fall sale. He has already promised himself to make coffee mugs for all of the nurses and my doctor—it is already a very long list of wonderful people.

Tomorrow I will take a few things to my desk at Neil Armstrong Elementary to get myself situated, then I have some software training to attend in the afternoon. I am looking forward to getting settled in my new job.

Thanks again for all of the happy thoughts and cards. Our shrine is building on the buffet, and is therefore a pleasant reminder of all of my support every time I wander aimlessly to the kitchen. Soon I will get a blog up and running to make news sharing easier. We are going to Chicago for a quick getaway Sunday to Wednesday, catching a Cubs game while we are there. It will be a nice distraction for both of us.

Health Issues Update

I should have emailed soon after my office visit on Friday, but I got caught up in living all weekend. I hope none of you have been worried by my belated communication.

Basically, I had a very good appointment with the oncologist. Keith was there of course, and Mom drove down just to be there. She has been great support, and an indispensable stenographer—her notes help me piece together anything that was fuzzy after we get home.

My test results went as follows: my abdominal CT was clear and my PET scan showed no activity below the diaphragm; my bone marrow biopsy/test was also clear. This means that the lymphoma has not spread beyond my neck and chest, so it has not gone beyond Stage 2, which is great. At this news, Keith breathed a huge sigh of relief—he must have been holding it in for a week. My baseline tests for heart and lung functions were very good, but will be monitored later in my treatment to see if the drugs have any negative side effects on those organs which would need to be treated/protected.

The strange part of this visit was that Dr. Chitneni said that there were three options for treatment—we had all thought that the chemo plan was the only option, so I was not mentally prepared to make choices. She said that all three options have the same success rate, so my course of action was up to me. Option 1 is to do chemo until my scans are clear. Option 2 is to do less chemo, then do radiation of my neck and chest after the chemo is done. Option 3 is to do just radiation, without chemo at all. We all (including Chitneni) agreed that the combination option (number 2) was not plausible—why choose a path that has two full sets of possible side effects? So we weighed the side effects of radiation (increased chance of damaging the heart/lungs, and increased chance of cancers in that area later: breast, thyroid, lung, fatigue) against chemo (nausea, hair loss, fatigue, minor neuropathy). I am vain. I do not want to lose my hair. Without my hair, even with a wig, it will be hard for me to forget, and I think for others to forget, that I have Cancer. In my mind, if my outsides could look the same, aside from a couple scars and some fatigue, then it would be easier to go about life as usual. In the end I used my brain…why choose a path that has a higher chance of putting me in this place again…I chose the chemo. Apparently that is good, since after I said it Mom and Keith voiced their concern that they were going to have to manhandle me into it, in a very nice way of course.

I will see the surgeon tomorrow about putting my port in. The port is like a valve on an inflatable ball that is sewn into my vein so that when I do treatments they will not have to do an IV every time—it also makes it less chance that the chemicals could damage my tissue. It is likely that I will begin chemo the end of this week.

My treatment will be every other week for at least 6 months. At four months, we will do the scans again to see if it is still there, or if it has been eradicated. If it is gone, we will do the other 2 months for good measure. If it is not gone at four months, we will do 2 more months, then do scans again, then likely 2 more months of chemo.

I feel ready for this now. Thanks again for all of your prayers, well wishes, and offers of helping hands—Keith and I truly appreciate it. I will continue to update you in this fashion—the journaling has been quite cathartic.

I Have Some News

As I was driving home from my first day of summer class at UNI, I felt a lump on the base of my neck; it is really just above the collarbone on the right side. I was able to get in to see my doctor a few days later, which led to x-rays. This moved me on to an Ear, Nose, and Throat guy, who did a needle biopsy of the lump. The results were inconclusive, so I was scheduled for a CT of my neck and chest, as well as an open biopsy surgery later that week. The initial results were also inconclusive, so it was sent on to the University of Iowa Hospitals for further testing. Approximately one month after my first doctor’s visit, I finally had a diagnosis: I have Hodgkins Lymphoma, also known as Hodgkins Disease. Of the lymphomas, this is the good one to have because the oncologist said we can actually talk in terms of curing it, not just treating it.

Aside from the lump on my neck, I feel fine—no other symptoms, so we hope that I am at the earliest stages. Because the CT showed oversized lymphocytes in my neck and chest, I am at least a Stage 2, but more tests will define whether it has progressed more than that. I had a bone marrow biopsy on Friday, which was not as painful as other people have experienced. My darling oncologist does not believe in needless pain, so there was plenty of Lidocaine involved since my bones are so strong from all of my milk drinking and love of cheese. Tomorrow I will have a PET scan and a CT of the abdomen. I see my oncologist on Friday for the results of all of these tests to determine an exact path. At this time it is a definite that I will have chemotherapy every other week for six months; this will likely begin in the next two weeks. I will lose my hair, so there will be a wig shopping trip in the near future. I have been growing it out since last fall, and it just has not been doing what I want anyway, so maybe it will be better when it grows in the next time.

Keith has been the amazing man he always is—and I sure am glad I have never taken that for granted. My mom came down to Davenport for my open biopsy and the first visit with the oncologist, which has put both Keith and me at ease. My dad was also able to stay with us for a night on his way through the Quad Cities, which helped all of us feel a bit more grounded. Our friends gathered around us on the day I was diagnosed, which was very comforting.

Right now, aside from appointments, we are living our regular life. Obviously, we have stopped trying to conceive, although we were told that the chemo I will have will not sterilize me, so that is good. This weekend we spent some time around the campfire with Keith’s brother and his wife and daughter, as well as a nice dinner with his folks. Most of our time was spent repainting the basement stairwell and steps, which looks fantastic. Perhaps I will send my before and after pictures with my next journal entry.

Also, I am busy trying to wrap up my summer class and get my endorsement in order since I accepted a new job in the middle of this hubbub. Many of you know that I took that last year off of teaching to pursue my School Library Media Studies towards an MA. I am near the finish line, and was lucky to find an elementary teacher librarian position open up this summer in North Scott, a rural district on the edge of the Quad Cities in Iowa. I am very excited for this new career path, even if it will have a bit of a rocky start.

I appreciate all of your thoughts and prayers. Even if I am not religious, I am a spiritual being, and Keith is a rusty Catholic, so we welcome your prayers and energy. I’m sure as treatment begins I will need some help with things along the way, but right now we are doing fine. I will try to send updates as we know more.