Animal Housewife

Back when I was first diagnosed with angioimmunoblastic t-cell lymphoma, I did what any of us would do as soon as I had access to a computer. I googled it. I didn’t find much of use, and I certainly didn’t find much that was reassuring. For example, I found this forum and frankly it pissed me off. The discussion affected me negatively; the prognoses always seemed so dire. In fact, that forum is one of the reasons I decided to start blogging about my experience on this site, which I had originally created in order to brag about my pets.

After chemotherapy treatment was over in April, I struggled for about a month with the fear that the cancer would return. I felt like I was left on my own for the first time in months, as I was no longer under the constant care of the doctor and his staff. The slightest itch on my skin or the smallest discomfort anywhere near my neck caused me to panic inside. And the panic was all-consuming. I couldn’t concentrate on anything except for the things I imagined going on inside my body. I felt as if I had no control over my body.

I was reading Robert Penn Warren’s All the King’s Men (1946) and I found a quote that matched exactly how I felt throughout the whole cancer experience:

“… learns that the little stitch in the side is cancer and that he is carrying around inside himself that mysterious, apocalyptic, burgeoning thing which is part of himself but is, at the same time, not part of himself but the enemy….”

When I visited my oncologist in May, a month after my last chemo and a few days after my last CT scan, I expected the visit to be positive. But I left frustrated. I had told my doctor, “When I researched that disease online, people basically said I had about two years to live, once I was diagnosed.” I expected him to scoff but instead he shrugged and said, “I don’t know what to say. It’s a really bad one to have!” It was as if the doctor was afraid to reassure me, even though all signs pointed to remission.

The doctor sent me to another oncologist for a second opinion on whether or not I should do high-dose chemo and a stem cell transplant. He had told me that since I appeared to be in remission, it should just be on the shelf in case of the disease’s return. I told him that I heard that without the procedure, my chances of survival were slim. When I visited the second oncologist and expressed this concern, he actually seemed to agree with me that my chances of staying in remission without the procedure were remote.

I decided against the procedure. I didn’t re-visit that second oncologist. I am healthy and the cancer is in remission and right now I feel that the battle is a mental one – and that battle is all mine.

I returned to my original doctor on July 29^th. He was happy to see me doing well. He said it means so much to him to have healthy patients in his office from time to time. He respected and agreed with my decision against the high-dose chemo and transplant. He said that there was a “more than small” chance that I would be just fine. I don’t understand why he seemed more reassuring that day. Was it because I was glowing with health? Did I have a different attitude that day?

Yoga has changed my life. I’m in the best shape I’ve been in for years, and it has helped me mentally conquer the moments of panic I described above. However, those moments come to me more and more rarely.

My pulse and blood pressure are steadier and lower than they’ve ever been in my adult life. I’ve learned to give up the vanity a bit and focus on health. You know what? Doing that makes me beautiful. People tell me I look great, people tell me I smell great. I smile more and I have a happy look in my eye that I didn’t before. Sometimes I think facing illness makes us learn how to take care of ourselves. I feel like I’ve come out of a long hibernation, one that started long before I was diagnosed, before I ever felt sick. Oh! And my hair is growing back so quickly!

I’ve learned not to let myself get angry over stupid things. I’ve learned not to bother hating people. Anger and hate hurt me more than they hurt anyone else.

I have come across so many nurses and medical techs in the last year that have never even heard of that disease.

I believe that even my trusted and beloved oncologist understands that disease as little as I do.

I say “that disease” instead of “this disease” because it is not here.

The next time someone says that “it’s a bad one”?  My response will be: “I’m badder.”

There is life after angioimmunoblastic t-cell lymphoma.

So – on with living!

A friend of mine posted this on Facebook today and I found it particularly moving.  Looking at it felt like a scary dream.

I have started to go to yoga and I absolutely love it.  The Yoga Center of Minneapolis had a free workshop on cancer wellness and the woman who ran it was so nice and gave off such a lovely, relaxed aura that I decided I wanted to attend her yoga classes regularly.  I go to her classes on Wednesday afternoons and I also attend classes by someone else on Sunday mornings.  I love it.  The muscles in my body are starting to feel different, stronger I guess.  I feel like I’m becoming better friends with my body.

But I really love what yoga has done to my mind. 

I have always been a very anxious person.  I am anxious when I go to sleep at night and I’m anxious when I wake up in the morning.  I’m anxious when I’m walking to catch the bus and I’m anxious when I’m sitting at my desk at work.  When I have to balance my checkbook or pay bills, I become so anxious that I actually start to tremble. 

Yoga is changing this.   I think it’s because I spend so much time inside of my head during yoga.  I knock around up there while I’m stretching my body out and I get relaxed and in touch with myself and I’ve realized that it feels awfully nice.

So why not try to be like that all of the time?

It’s all about the realization of your thoughts.  For example, I am trying not to rush through my actions.  When I am doing the cat boxes or some other chore, I find myself trying to hurry through those things and I get frustrated and anxious.  If I realize that this is just a chore and my life will still be there at the end of it, I can just relax and do the darn chore and not hate it so much.  Why be frustrated and angry while I’m doing the cat boxes?  Instead, why not relax and think happy thoughts while I’m doing them?  After all, it will make doing them so much more enjoyable.

One afternoon, after I had attended my first yoga class, I tripped over something in the back yard and a surge of anger, initiated by frustration, rushed through my mind.  I opened my mouth to curse but I caught myself at what I was doing.  Instead, I took a deep inhalation of breath, held it for a moment, and the exhaled, letting go of the anger while I did so.  I tripped, so what?  Then I continued on with what I was doing.  I was rather new at this and so the whole process was rather dramatic and when I came out of it I saw my husband standing at the other end of the yard, watching me and laughing.  But I found that the more I catch myself feeling angry or anxious and grabbing control of that and changing my mood, the more I am able to do it more naturally and without so much physical emphasis.

Being angry or anxious never solved anything.  Negative thoughts hurt us more than they do the people or things at which they are directed.

I have control over how I feel.  Why feel bad?

I was watching The Real Housewives of NYC a couple of weeks ago and the women were volunteering their time by cooking a dinner at the American Cancer Society.  Apparently, the idea behind that evening was to feed cancer patients a nice meal.  The place appeared to be a store front of some sort with several card tables set up and the kind of kitchen one finds at cooking schools.  One especially noticeable prop was a bald, sick-thin woman who appeared once in awhile in the background, as the Housewives futzed about with the salad and argued over whether or not the Countess’ husband was considered “old” or not.

It really pissed me off.

Why would anyone assume that, because I have cancer, I would want to go to something like this?  It’s not just that these women are despicable.  Any stranger could be behind the meal, and it would still be a meal made by strangers, served at a card table, in a store front.   Honestly, I’d much rather be given a gift card or taken out to a nice restaurant, thank you very much.  Or I’d rather have friends and family come over and make me something nice.  Why would I want to sit at a card table, in a store front, and have strangers serve me some meal?

Now, if I were homeless, I’d be all over this kind of thing.  However, I’m NOT homeless.   I have cancer.  Last I checked, these two situations were quite different.

Ladies?  Thanks anyway.  I’ll eat at home.

Here are the results from the first scan I’ve had since I started chemo.  Basically, my lymph node system looks normal.

a co-worker:  So, has the cancer given you a new outlook on life?

me:  I don’t know.  Do I get to stick around for it?

The fear sits there every moment.  Sometimes it hides behind my normal thoughts and normal actions.  Other times it steps forward unexpectedly with a light step but a powerful effect.  I’ll be at work in the morning, groggy and adjusting to the day like I would any other and it makes itself known in something as small as looking at the clock.  I will check the time and remember glancing at the same wall last season, before I knew, and this is how it presents itself to me:  You Have Cancer. 

My normal reaction to realizing I have a problem is to solve it.  This one I can’t.  I can only go through the medical routine and hope for the best.  I have little or no control over the results, even though whether or not I live or die will be determined.  This is unspeakably horrifying.

Last weekend I brunched with friends at Salut in Edina.  I absolutely loved it.  Look at my short hair!  I had it all cut off as soon as I was diagnosed with cancer.  I donated it to Locks of Love.  As soon as the short hair starts falling out, I’m going to have my husband shave my head completely.

So, ever since I had my first chemotherapy session, I have been absolutely ravenous.  I want to eat and eat and eat.  I took Prednisone for five days after chemo, and that could explain the appetite then, but I’ve been off the steroids now for three days and I still can’t stop thinking about food!  I was watching tv a bit ago and I polished off an entire bag of Funyons!  Good God!  And it’s not like that was the only thing I’d had to eat for awhile.  I had fajitas for dinner and grilled cheese for lunch and a plateful of clementines and ginger cookies for a snack.  Lord, I had powdered sugar donuts and crangrape juice for breakfast!  I lost a lot of weight throughout becoming ill and it seems like no matter how much and what kind of food I consume, I don’t gain any of it back.  Is my body eating up zillions of calories as it processes the chemo drugs and attempts to heal itself?

This fall I came down with an enduring cold and, for the first time in my life, the lymph nodes in my neck were swollen.  I went to the clinic, where the doctor prescribed me amoxicillan.  A few days after I started taking it, I began to itch uncontrollably.  I went back to the clinic, where they told me I might be having an allergic reaction, so I stopped taking the antibiotic.  A few days after that, even though I was no longer taking the drug, the itching grew worse and worse until finally I was completely covered in hives, from head to toe.  I was miserable.  The clinic staff sent me to a dermatologist, who thought I might have mono and prescribed Prednisone for the hives.  I was returned to the clinic, where I tested negative for mono.

It took some time but eventually my skin mostly returned to normal.  However, I noticed that I still had a persistant cold and the lymph nodes in my neck were still swollen.  I was finally able to get into my regular doctor, who prescribed Cefuroxime and told me to contact him if I wasn’t feeling better within a few days.  Not only did I not improve, I began to feel worse, so I returned to the doctor, who diagnosed me with bronchitis and put me on more Prednisone, for the bronchitis and a lingering rash from the initial breakout, and a different, “stronger” antibiotic, Levaquin.

This time, I thought we had conquered whatever was bothering me.   The cold symptoms went away and I could no longer see or feel the lymph nodes in my neck.  However, a couple of days after I took my last drug doses, I was taking a shower and discovered a golf ball sized lymph node in my armpit.  I hurried back to the doctor that very day.  I was given another prescription for Levaquin and sent off to have a chest CT scan, which showed multiple swollen lymph nodes.  It was at this point that my doctor began to suspect lymphoma.  I returned the next day for a full chest/abdominal CT scan, which showed swollen lymph nodes throughout my body, as well as a swollen spleen.  Furthermore, I began having hives again, this time I believed from the Levaquin, so I went off that and back on Prednisone.  A mammogram came back negative.

I was referred to an oncologist, who had me undergo a needle biopsy of a lymph node in the armpit.  It came back negative for b-cell lymphoma but as “reactive.”  So I had a bone marrow biopsy done, which came back negative but “hyperactive.”  I had a full biopsy of the lymph node, which came back negative but “reactive.”  Another CT scan showed that my lymph nodes were more swollen than they were the first time they were analyzed.  Finally, I had one last full lymph node biopsy done and the sample was sent to the Mayo clinic in order for the pathologists to specifically look for t-cell lymphoma.  They found it.

This entire process took three months.  I’m frustrated that it took so long.  On the other hand, I’m glad that my oncologist was as persisitant as he was.  Obviously, time is precious in a battle like this.

I have been diagnosed with angioimmunoblastic t-cell lymphoma.  It is a rare but aggressive form of lymphoma.  I am taking chemotherapy once every three weeks.  The drugs given to me are Vincristine, Adriamycin, and Cytoxan.  I then take 100 mg of Prednisone for 5 days after each treatment.  After three sessions, I will have a CT scan in order to see if the treatment appears to be working.  If it does, I will most likely continue for a total of six months.  It is possible that once this is finished, I will have a stem cell transplant.

I am terrified.  Sometimes I get angry or depressed.  Or both.  But I will do what I can to fight this disease.  I want more than anything, anything in the world, to live through this, to come out on top, to be able to live a happy healthy life for many years when this is over.

After all, I have my four dogs and my six cats.  By the way, they’re going to be helping me every step of the way.

This website was supposed to be about a woman happily (mostly!) living in a house with her husband and too many animals.  Four dogs and six cats, to be specific.  However, these last few months have been overshadowed by my being sick off and on and at the doctor a million times.  Finally, I have now been diagnosed with a type of cancer called angioimmunoblastic t-cell lymphoma.  I underwent my first chemotherapy session yesterday.  I want to start at the beginning of this story and tell it as thoroughly as I can, in case someone else might have the same disease, in case someone’s just simply interested, in case I can help at least one person out who’s scrolling around on the internet and looking and looking for helpful information.  I’ve done it myself, and there isn’t much on the internet about this disease.

It’s New Year’s Eve and my husband is out with a friend.  I’m at home with the animals, wondering if I’m going to start feeling sick.  So far I’ve felt as good or better than I did before I had chemo.   I’m going to curl up with some snacks and watch tv.  I’ll be back with the beginning of my story soon.  Happy New Year, everyone!