Chandelier

Taking chemo is really strange. You feel fine one minute and the next minute you aren't fine. I was only home for 12 hours when my temperature spiked to 104 degrees. Jim took me to the local hospital and later my oncologist requested that I return to my primary hospital.

I call the attached picture my "chandelier". It gives you an idea of all the drugs that are being infused into my body. This has not been fun at all.

Designated Memory

The only way that I can keep up with all the info that the doctors are telling me is to use my "Designated Memory", my sister Julie, who takes great notes. As I mentioned before, my short term memory is lacking, and I'm sorry, what was your name again?

Increase in Numbers, Prayers are to Blame

BTW, the title of this post is to be sung to Elvis' song, "Return to Sender" and "blame" is not the best word to explain the miraculous exponential increase in my lab numbers. My white blood count went from 100 t0 3,000 and my platelets went from 20,000 to 40,000. Both counts are still considerably below normal, but are improving. Also, I've not had a fever for the last 48 hours. Keep up the prayers!

Ice Packs, Pits, and Pneumonia

I'm back in the hospital. The chemo knocked out my immune system and I started running a high fever so they admitted me to find out what's causing it. The nurses around here have a surefire way of bringing a high fever down. They fill soft, cottony-like bags with ICE CUBES and place them under your armpits and on your groin until your fever breaks. Last night in the middle of the night my fever of 104 degrees finally broke. That's the good news, the bad news is that I have pneumonia.

However, I did have an exciting time when the ice cube bag that was placed on my groin to cool the blood to my legs...BROKE! I jumped up out of bed (as well as I could, as I still was attached to Wally.) (Sorry, but Wa-a-a-l-l-ee will have to wait until another post). My sister was laughing hysterically and called the nurse to change the linens.

I hope that my temperature stays down :-).

Tiredness and Memory Problems

One of the side effects of chemo is tiredness. The tiredness has hit me full force and I can hardly get out of bed to go to work.

Also, the loss of short term memory is a problem. I have to write things down, and even then will have problems with short term memory. Also the loss of short term memory is a problem. Did you know that short term memory loss is a side effect of chemo? It is and I'm having some problems. What was your name again?

A Family that Covers

I have really been blessed with a wonderful family that is helping me through the throes of cancer. Two of my sisters flew in from Tennessee and Ohio to come to visit me while I was in the hospital. (This means that their fabulous and understanding husbands are watching 8 kids, 5 cats, 2 dogs... well, you get the picture.) My parents flew in from Springfield, Missouri and my brother and sister in law from Denver have come to visit me also. And my ever-faithful local sister Kim, who is also an RN, has been an ever-present help. It's been a little crazy, but fun to be together again.

My sister Sharon made a quilt for me just for my hospitalization which epitomizes the love that I feel from my family. Their love covers me and comforts me.

Foam In Foam Out

Ten days after Day 1 of the chemotherapy, my white cells will bottom out and I'll be susceptible to all kinds of infections. One of the ways that the hospital controls the germs that live on the sweaty palms of my visitors is for the visitors to "foam in, foam out". It's a procedure where the visitors use an antibiotic foam to wash their hands before and after they visit my room. The procedure keeps me safe from their little germies and them safe from any little germies that I might have.

Inner Child and the Chemo Nurse

While the nurse was explaining the side effects of my next chemo drug, I suddenly grabbed my throat, groaned and pitched over on the bed. The nurse was terrified. My sister, who is an RN, lunged across the bed to catch me. Everyone was in a panic. Then, I start to laugh. This whole cancer thing has brought out my inner child. :-)

Honestly

For those who are wondering how I am handling the chemo, honestly, praise God, I am doing very well considering my body is being invaded by toxic chemicals. The antiemetics (anti-nausea drugs) are doing their work. I was a little queasy after eating some greasy (but yummy) pork sausage with breakfast one morning, but otherwise all is well on the barfing front. I expected to be throwing up on a regular basis, so not doing so is a pleasant surprise.

Cytotoxic

Cytotoxic (sigh-toe-tahk-sik), adjective: toxic to cells. Not only are the chemotherapy drugs cytotoxic in that they kill both the cancer cells and a lot of other cells (like my hair) that were minding their own business, they make me cytotoxic. My bodily fluids must be handled with care. Jim and I did, however, get permission to kiss. (This last sentence was ghost written by Jim). :-)

Here we go...

Well, tomorrow I start my chemotherapy. I know some of what to expect because my husband Jim had Hodgkin's disease, another type of lymphoma. But chemo is different for everyone - different drugs, different reactions, etc. I'm not looking forward to all the barfing, but I know that there are good antinausea drugs available now. So, pray for me as I unwillingly start this experience.

Tests

It's been a long week. On Thursday, January 8, I had what seemed like a zillion tests at the University of Colorado Hospital in Denver. The worst was the bone marrow biopsy where the doctor uses a hand held device that looks somewhat like a a tool that you would use to remove a cork from a wine bottle. Dr. Myint said I had strong bones which meant that he had to press and twist the device even harder to get into the bone to remove the marrow. He said that it was OK to scream.

Once all the test results are back, my doctor will "stage" the cancer and tell me if there is any other involvement of the cancer in other parts of my body besides my brain. I'll keep you posted.

Back to Work

Today I went back to work. The winter quarter started today and we had 40 students in two classes. Interacting with seminary students is one of my favorite parts of my job. Some of the symptoms that brought me to the doctor have lingered and I found it difficult today to concentrate. It was really frustrating because I am usually so organized and efficient.

In the Beginning

It all began the third week in November when I started falling. I had short term memory loss and would get lost driving even on the most routine routes. I would put things away in the wrong places, something totally uncharacteristic of me. I would get confused easily.

I saw my primary care physician who ordered an MRI and set up an appointment with a neurologist. The MRI was on a Monday, December 15, 2008. My doctor called on Tuesday and said that the MRI was abnormal. My neurology appointment was on Wednesday, December 17. The neurologist took one look at the MRI and sent me by ambulance to the University of Colorado Hospital in Denver. I had four lesions/masses on my brain. The neurosurgeons there performed a 4 hour brain biopsy on December 19. I have a pretty 6 inch scar on the back of my head to prove it.















It's only been five weeks from the onset of the symptoms and my entire world has changed. I face 6 rounds of inpatient chemotherapy followed by a stem cell transplant. This is not going to be fun.

Courage

I don't feel very courageous. I'm burrowing my head in the sand and ignoring the reality of my situation. It's easy to do. I've been reading Traveling Mercies by Anne Lamott and I like her quote "...courage is hope that has said its prayers." The thing is I don't feel much like praying. I feel like ignoring my entire situation, and if I ignore my situation, then I don't need to pray.

Jim and I have started reading Celtic Daily Prayer: Prayers and Readings from the Northumbria Community in the mornings and when we go to bed at night. He reads and I listen, closing my eyes to fully concentrate on the words. In the Daily Office: Morning Prayer, there is a canticle that has started to penetrate my resistance.

Christ, as a light
illumine and guide me.
Christ, as a shield
overshadow me.
Christ under me;
Christ over me;
Christ beside me
on my left and my right.
This day be within and without me...

For now, all I can do is listen to the prayers in the Daily Office.

The Wig

I'm going to lose my naturally curly blond hair because of chemotherapy, so Jim and I went shopping today for a wig to cover my up and coming bald head with the 6 inch scar on the back of my scalp from the brain biopsy. We found a nice wig in a classy style that is the same color and length as my own hair, but is straight and not curly. It's very unnerving to look in the mirror at myself with a different hair style knowing that under the wig is the evidence of the insidious cancer that has riddled my brain.

The Diagnosis

On Wednesday, December 31 my husband Jim and I met with my oncologist to receive a definitive diagnosis of my brain biopsy along with a treatment plan. I have Central Nervous System (CNS) Lymphoma, a very rare form of brain cancer. I have an extensive battery of tests next week (PET/CT scan, bone marrow biopsy, echocardiogram, blood work, etc.) to stage the disease. I should start chemo therapy the following week. I'll have a week of chemo and then two weeks off for a total of 6 cycles. What a way to start a new year...