Anniversaries

This past month has been full of anniversaries and, of course, we celebrate the start of a New Year tomorrow. A year ago today we got the formal diagnosis of central nervous system lymphoma, and that anniversary followed the anniversaries of the onset of neurological symptoms, an abnormal MRI, and a brain biopsy. So 2009 began inauspiciously and turned out to be a year we won't be sorry to see in the rear view mirror.

On the other hand, the past year reinforced to us the preciousness of relationships. Jim and I learned that, while we love our comfortable home in the shadow of the mountains, when we just have each other in a hospital room, it's enough. Family members sacrificed again and again to lovingly care for us. And both old and recent friends showed us what friendship really means when times are tough.

One key anniversary a week ago was the date we celebrate as Christmas, when God became a tiny human being so that we can have abundant life, both now in the midst of the ups and downs of this life, and in the eternal life to come. That hope has kept us going.

Finally, a quick update. I'm currently off of all IV meds and growing a little stronger each day as physical and occupational therapists work with me almost daily. My intestinal issues are healing more slowly that I would like, but there's progress there as well. My blood counts are stable if not particularly robust yet so I'm able to get out occasionally for a meal or retail therapy. :-)

So Happy New Year to everyone who has been following my saga! Thanks for your prayers and encouraging comments, and may God bless 2010 for all of us.

Home Sweet Home!

Jim has been keeping up my blog, and yes I am home! I came home with two IV meds that I had to continue. One I am already finished with, the other IV will be finished by the end of the week, and then I'll have more flexibility with out being attached to an IV pole.

We have had great in home nursing help. I have a CNA (Certified Nursing Assistant) coming twice a week to help me with my shower, a physical therapist who comes three times a week, an occupational therapist who comes a few times a week, and an RN that comes on Mondays to draw my blood. I also have regular oncologist appointments every other week.

I was in the hospital so long this time (90+ days), and in bed most of that time, that I've lost my ability to walk, but do OK with a walker. My goal is to walk unassisted and to even climb up and down the stairs by myself.

Being home is wonderful. I get to sleep in my queen-sized bed with my husband, Jim! (Two people don't fit in a hospital bed...we tried that.) I don't have to eat hospital food (Jim is a great cook and our friends have generously made meals for us).

Stem Cell Transplant, Day + 93

We're finally home! Denise was discharged from the hospital on Monday, the 16th, but the doctor wanted us to stay closeby for a week or two. So we stayed at the Fisher House until yesterday when the doctor decided that Denise's labs were so stable that she could go home without much risk. She still has some mobility issues and her GI tract is not back to normal yet but staying in the hospital wouldn't have made those any better. It's good to be back in our own space although it was nice to have a nursing staff, housekeeping, and room service at the hospital.

Stem Cell Transplant, Day+87

Early in the week, it looked like Denise might have been discharged today, but her mobility and GI issues have improved more slowly than we hoped. The doctors are shooting for a release Monday now. I'll let you know when we leave. It looks like initially we will go to a Fisher House a couple of blocks from the hospital for a week or two (I'm already staying there). The Fisher House is a guest house for families of patients who are veterans, much like a Ronald McDonald House if you're familiar with them. This one was previously the Commander's Quarters for the old Fitzsimons Army Medical Center, so it's pretty comfortable. Anyway, please continue to pray for rapid improvement in Denise's mobility and GI tract, and for her confidence.

Stem Cell Transplant, Day + 10 weeks, 2 days

Sorry that it's been a while since the last update, but there's very little new to report. We're still in the hospital and Denise is still being treated for various GI viruses which may be showing some slow improvement. The spinal rituxan brought a quick response to the Epstein-Barr virus that showed up again in her spinal fluid; the spinal fluid sample last Friday was negative, but they will likely give two more injections for good measure. Meanwhile, the longer she's in the hospital (finishing week #11) the more things pop up like muscle spasms and skin problems from inactivity and long periods in bed. No light at the end of the tunnel yet.

Tomorrow I'll out-process from my Air Force civil service job at US Northern Command and effective Sunday, November 1 I'll be an old retired guy.

Jim

Stem Cell Transplant, D+Several Weeks

Jim again. Several of you have asked about Denise so here's an update post. We're still in the hospital five weeks or so after the last post in which I hoped we'd be gone in a week or so. Basically, it just takes a long time for one's GI tract to recover from the harsh chemo Denise received to prep for the transplant. She has very slowly improved with increased capacity for eating normally and reduced diarrhea and abdominal cramping, but that's been an up and down process. Right now, she's having a bit of a setback with a resumption of pain and diarrhea and will have a colonoscopy tomorrow to find out why. On the plus side, her transplant is solid, with strong blood cell counts except for platelets which are still low. This is getting kind of old.

Stem Cell Transplant, Day+15

After some ups and downs the past few days that required another stint in ICU, I think we can cautiously say that Denise is on the road to recovery now. Her counts are good, all the various tubes are out, and she's talking and even smiling again. She's still getting lots of IV meds, principally antibiotics for the infections, but hopefully she'll be able to start back on a liquid diet tomorrow and more robust food soon after. Hopefully, we'll be able to leave the hospital for our apartment within the next week or so.

Stem Cell Transplant, Day+9

Monday night, after I posted the last entry, Denise spiked a high fever (103+) and had so much fluid build up that she could scarcely breathe. Tuesday, they moved her down to ICU where she could get more comprehensive monitoring and multi-specialty treatment. Labs showed enzyme markers for a potentially serious liver disease. Tuesday and Wednesday she was very sick, but there are a lot of indications today that Denise has turned a corner. Her temperature was near normal all day, she was much more alert and communicative, the enzyme (bilirubin) for liver disease dipped a little, and her white cells have risen from 0.0 to 0.8 (800 white cells per cubic millimeter)*. The doctors from all the various specialties that have trooped by ICU are all encouraging and happy with the direction of her treatment. This is not to say that there may not still be some ups and downs ahead or that she's entirely out of danger but we're cautiously optimistic for the first time in several days. Thanks for your thoughts and prayers; keep them up!

Stem Celll Transplant, Day+6

Denise has had a rough go since the transplant. Chemo has put stress on most of her major organs and systems and she's in a lot of pain, especially in her abdomen. The doctors are managing her symptoms, and while she's currently stable, some of her issues could potentially become very serious complications. Please pray for protection and for her immune system to come back on line sooner rather than later.

Stem Cell Transplant, Day+3

Denise is pretty sick as described below, and it could get worse before it gets better. The chemo had a much harsher effect than we expected, especially to her gastrointestinal tract. I won't go into the anatomical details; suffice it to say that she's in a lot of pain and discomfort. Still, the doctors say that what she's experiencing is "normal" albeit on the rougher side of normal. They will continue to treat the symptoms, but don't expect significant improvement until her counts start rebounding, which could be another week or more. Not sure I'll be able to update her blog as regularly but will try to every few days.

Stem Cell Transplant, Day-0 (Both Days)

Jim here again for Denise. Denise received half of her stem cells yesterday about 11:00 a.m. and the other half today about the same time. Everything went very well yesterday until late afternoon when she had some nausea and her esophagus became very irritated as a delayed reaction to the chemo. She was up much of the night with the continuing diarrhea (which turns out to be a nasty gastrointestinal bug that is commonly picked up in hospitals of all places). And she ran a fever for several hours of up to 101.5. Then during the transplant this morning, she appeared to be having a reaction to the preservative for the stem cells, exhibiting some chest pain. They immediately ran an EKG and her heart looks OK but they're watching her closely. So they have her on some pretty strong pain meds and antibiotics, and by this evening she is resting more comfortably. The docs assure us that these are fairly normal responses to the stem cell transplant process but they'll stay on top of them. Meanwhile they will try to keep her as comfortable as possible. Nobody said this would be easy.

Stem Cell Transplant, Day-1 and Counting

Hi folks. This is Jim writing for Denise. This has been a hard day with uncontrollable diarrhea, queasiness, and overwhelming fatigue. Actually, if the diarrhea stopped, I think the rest would be pretty bearable. In spite of all this, Denise is doing much better than most people do. The doctor is very happy with her overall health going into the first day of transplant tomorrow. Please pray that the diarrhea would resolve quickly, that she'd have more energy (although this is normal when your blood counts are nearly wiped out), and above all, that the transplant would go well tomorrow. There are potential dangers to the transplant itself, but of course we pray that God will use the transplant to heal her.

Stem Cell Transplant, Day-2 and Counting

Today has been rough. I've been queasy and found that I have C-diff a bug that lives in my digestive system and gives me diarrhea. I haven't been able to eat much because I've felt so nauseated.

Tonight around midnight, I'll receive my last chemo drug, the one that makes my hair fall out again, along with an anti-nausea medication.

Stem Cell Transplant, Day-3 and Counting

Today, I have no energy and have had diarrhea pretty badly (I know that's indelicate, but there it is). I finish with Busulfan tonight, and tomorrow, the final day of chemo, I'll get Cytoxan. It's probably the harshest of the drugs in this series (they saved the best for last), so keep praying that it goes well. My sister Kim came up for the day to cheer me up and she brought a wonderful letter from my dear friend, Alice. I'm also looking forward to my sister Julie coming to visit on Tuesday. Family and friends continue to be a constant source of strength and love.

Stem Cell Transplant, Day-5 and 4 and Counting

Yesterday and today I received Busulfan, the second of the chemo drugs to prepare me for the stem cell transplant. Although I still haven't had any significant nausea or other discomfort, it really makes me tired and somewhat disoriented. I did manage to put in 1/2 mile on the treadmill this morning. We've been watching the first season of "Lost" in the evenings after dinner. We've never seen the show before so it's been pretty entertaining. We even brought our own microwave popcorn (but gotta watch out for little kernels in the bedding)!

Stem Cell Transplant, Day-6 and Counting

I've had a pretty easy day so far today. and even walked 3/4 mile on the treadmill this morning. Tomorrow, I'll start Buslufan another chemo drug that has a little harsher side effects. So keep me in your prayers.

Stem Cell Transplant, Day - 7 and counting...

Today I felt well enough to walk 3/4 of a mile after breakfast on the treadmill in the solarium, which has a great view (it is on the 11th floor of the hospital). I ate all my meals for the most part. Jim and I watched the first few episodes of the TV series "Lost" this evening from DVD set that our pastor loaned us to pass the time in the hospital. Besides being confined to the hospital, I feel very well.

Stem Cell Transplant, Day-8 and Counting...

Jim and I got up to the hospital in Denver this morning and got settled in the hospital. Then I had the obligatory lab work and chest x-ray followed by a lumbar puncture. (With a conservative estimate, Jim says that I've had 15 lumbar punctures since my treatment began in January.) I got a look at the needle today (I asked to see it). It was 6 inches long!!

I started one of my chemo drugs today, Thiotepa, which is given through a central line in my chest over 1 hour. I'll get the same drug at the same rate for 2 more days. So far, so good.

Thanks for all your prayers on my behalf.

Fear and Trembling

I will be admitted to the hospital for 3-4 week stay for a stem cell transplant on Monday. There I'll have three different types of chemotherapy over 8 days, then a day of rest and then my transplant on August 18. The chemo is harsher than any that I have received so far, so the side effects are expected to be equally as harsh.

For stem cell transplants, there is a descending count down...chemo starts on day 8 and runs through day 0 which will be transplant day (and essentially a new birthday and lease on life). Transplant day is actually day is fairly anticlimactic. Basically, it's like a blood transfusion. Then, the hope is that the stem cells will engraft in my bone marrow within 10-14 days and begin cranking out new cells.

I've been waking up several nights every night since last Monday. I've been very anxious, which I suppose is expected, but I feel that fear even during the day now. I would appreciate your fervent prayers on my behalf.

Vacation Plans Hijacked

We were scheduled to go on vacation to Monterey and northern California to see some of our kids and our grandkids a few weeks ago, but the fever and hospitalization I mentioned in my previous post halted those plans. We rescheduled and will leave tomorrow for a less ambitious trip (4 days instead of 9) so I can get back to complete apheresis (stem cell collection) and start the transplant. My doctor is anxious to get the transplant started as soon as possible.

Catch Those Stem Cells!

The apheresis technician has been able to collect about half of the stem cells that I need for a transplant using an apheresis machine which basically withdraws my blood through a central line in my chest, puts the blood through a centrifuge, and collects stem cells. The remaining blood minus stem cells is returned to me. Two of the days that I was scheduled to have collection (apheresis) of my stem cells my lab results were not high enough to collect. Another day I had a fever and had to go back to the hospital (and stayed for 5 days).

Here is a great article about the transplant process from the National Cancer Institute - www.cancer.gov/cancertopics/factsheet/therapy/bone-marrow-transplant and the lyphomainfo webpage - www.lyphomainfo.net/therapy/transplants/bmt.html

Stem Cell Transplant

I know that it has been almost three weeks since I have written, but I wanted to wait until I had some news about having a stem cell transplant before I wrote again. I've just finished 10 cycles of chemotherapy, and the doctors consider me a good candidate for a stem cell transplant. My chances for a cure with the transplant are 50-50. With chemo alone, my chances are very limited.

The transplant and isolation period afterward will be about 2-3 months long (I can have visitors during that time; I just have to stay in the hospital for the first month and in an apartment within 30 minutes of the hospital for about 2 months.) We'll be able to visit some of our children and grandchildren in California before the transplant though, which I am so thankful for.

P.S. For those of you who are interested, I'm having an autologous transplant--the doctors are using my own stem cells (they will collect the stem cells next week and freeze them until they are needed. After my entire immune system is wiped out with very strong chemo the frozen stem cells will be given back to me.)

Keep me in your prayers.

Short and Silver

My hair is still short, but I went to my hair stylist today to get some advice about how best to grow it out. She trimmed it up, and she'll continue to do that until my hair is the length that I want it. I imagine that will take 6-9 months.

Also, I wanted her to tell me what color my hair is coming in. First of all it's straight and not curly and it's growing in SILVER!

Same-o-same-o

Jim and I returned from the hospital last Sunday evening in time for church (yeah!). Usually I have to stay in the hospital for chemo for one day, and then stay for another 5-7 days to"wash" the IV chemo drug from my system. The idea behind this is that the chemo drug is only supposed to be in my body for a certain numbers of hours. Otherwise it's toxic.

We go back up to Denver for a clinic appointment with my doctor in a few weeks who will tell us what the "plan" ahead will be for the rest of my treatment. There may be more chemo, antiviral meds to kill off the EBV virus and maybe a stem cell transplant. Since January we've been driving up to the University Hospital in Denver, staying a few days for chemo, and then coming back home...same-o-same-o.

Gracie on Vacation

Gracie is our 8 year old Weimaraner. Since we are gone so much in the hospital and not at home much we decided that she needed a "vacation" so that she could be around other people and dogs. She's been at my brother's house in Denver for about 3 months. She has been very happy there with lots of hands to pet her.

AWOL

Sorry that I haven't posted anything for a few weeks. I had chemo for 6 days, and then came home for a few days to rest and then I went back up to the hospital (160 miles round trip) for a support group meeting for people who have lymphoma in the brain like me. I go to the local hospital to get labs drawn 3 mornings a week, and a dressing change on Monday. I have physical therapy twice a week and a nap every afternoon (2-hours). This new schedule has been busier than I expected.

Also, I was kind of bummed about my entire situation. It's difficult to be cheerful when I really can't go anywhere (I'm not allowed to drive yet.) If my white count is really low I have to wear a mask to keep any little germies from invading my body so that I don't get sick.

But, I've been doing alot of reading, mostly Anne Lamott books and an collection of stories by Flannery O'Connor which has been delightful.

Stockholm Syndrome

In order to take my scheduled chemotherapy, my blood counts have to be high enough. I have my labs drawn three days a week to make sure that they stay within the safe zone. Because some of my lab results have been "critically low" I haven't been able to have my scheduled chemo this week or last.

You would think that I'd be happy to stay at home rather than go to the hospital, but I really want to have my chemo stay on schedule. My doctor has to weigh the risks between letting the cancer continue to grow, or wiping out my immune system by giving me chemo therapy when it is too risky. Plus I miss my nurses and doctor.

Some of you may remember when millionaire heiress Patty Hearst was kidnapped by the Symbionese Liberation Army in 1974. After 2 months in captivity she took up their cause and actively robbed a bank. She was convicted and imprisoned.

Showing loyalty by a hostage to their captor is called the "Stockholm Syndrome". Now, I'm not equating my doctors and nurses as my captors, and chemotherapy as their cause, but I truly believe that they are doing the right thing with my care.

Kewpie Doll

I take 3 hour naps every afternoon because I am so tired. And with a nap comes. . . the dreaded, "Bed Head"! My hair is only 3/4 " long and I usually wake up looking like a Kewpie Doll.

Lately I have been wearing my wig less and less, even in public. I compensate by wearing heavier eye make up and large hoop earrings.

Gidddy Up!

My oncologist has ordered both physical and occupational therapy to speed my recovery. In the beginning before my brain biopsy when I didn't know that I had Primary Central Nervous System Lymphoma (driven by the Epstein Barr virus), I would loose my balance and fall routinely. So now I work three times a week with both a physical therapist and an occupational therapist who come to my home.

The physical therapy has been the most difficult for me. I still have problems walking without loosing my balance and I can't squat without falling over. The physical therapist suggested that I get a cane (but I'm determined not to need one). :-)

Neutropenia

I have blood siphoned from my body regularly. A few days ago a lab tech remarked, "It's a wonder that you still have any blood!" Last week my blood counts were too low to have chemotherapy and the chemo had to be postponed a week. This is not a good thing. The cancer is growing without a regular infusion of the chemo drugs.

I was neutropenic (new-tro-pee-nic) last week. My neutrophils were abnormally low. Neutrophils are white blood cells that serve as the major defense of my body against acute bacterial and certain fungal infections. When this happens, I have to take extra precautions. I can't be around any sick people and I have to wear a mask when I leave my room at the hospital or leave my home. I can't eat any fresh fruit or vegetables (unless they have thick skins like melons or bananas and are washed with soap and water), or be around fresh flowers or plants because they might harbor fungi. I can only drink bottled water. The dietary restrictions were the hardest part for me because I love fresh fruit!

Ninety three minus seven

When my doctor would come by for rounds in the hospital, he would ask me to answer arithmetic questions. The one that he usually asked was 93 minus 7. To that answer, I was to minus 7 again, and to that answer, minus 7 again, etc. I thought he was just playing a game with me. For a while there I couldn't get past 93 minus 7. Really, he was checking to see if a certain part of my brain was functioning properly.

Bummer

(FOR WOMEN ONLY, WHO WILL UNDERSTAND MY DISMAY) I am beginning to get discouraged when I walk into my closet. Nothing fits! The chemo therapy has caused me to retain fluid and my ankles and abdomen are swollen. I've gained 10 lbs!

The Samson Effect

Jim has an interesting cause-and-effect theory. He says my improvements began about the same time that my hair started growing back, hence the analogy to Samson in the Bible. You may recall that when Delilah cut off Samson's hair, he lost his superhuman strength, but when it grew back so did his strength. Jim wants me to grow my hair all the way down to my butt. Here's a picture of my new fuzzy head alongside my wonderful sister Julie.

Happy Doctor, Happy Patient

If my doctor could, he would have jumped up and down with the news he was about to give me this morning. His treatment plan for me was working! There was a period of time the end of February and the first part of March that my husband, Jim, and my doctor didn't think that I would survive.

But now my recent MRI shows that the swelling in my brain is down by 90%, my spinal fluid showed that my white blood count, my protein level, and the activity of the Epstein Barr Virus in my spinal cord have decreased. The lesions have decreased by 25%, are paper thin and not likely to be active. However, I still have a large lesion on the top of my brain that controls memory, so my short term memory will be the last thing to recover.

Rip Van Winkle

Two weeks ago I woke up from a long slumber, or at least it felt that way. I felt like Rip Van Winkle where time had passed during his sleep and he woke to a bewildering passage of events. My brain began recording events again and I could retrieve them with some reliability. I guess that's what memory is.

I don't want to equate my metamorphosis with the resurrection of Jesus, but it's at least symbolic that my recent memories resumed around Easter Sunday.

Miss Congeniality

There was a two month period beginning in mid January where I was just totally oblivious to what was going on around me. I was hospitalized all but 15 days, from January 12 to April 14 . I was worried that during that time I had been unkind or hard to get along with. I am happy to report that my family, who had stayed with me during that time, and the nurses that were caring for me, described me as happy, content and kind. My memory was incomplete though and I told stories of where I had lived (but I hadn't lived there) and I described our kids as small children, when in fact they are grown with children of their own.

By mid-March though there was a noticeable improvement in my balance, strength, and coordination. Jim was very encouraged.

We're hospitalized now for round #7 of my chemotherapy. I will probably have a total of 10 cycles.

Thank you

We're home again, this time for about five days before I have to go in for another round of chemo. This experience is getting less and less fun, but I've learned that doctors and nurses need to be thanked, and often. Try it.

My sister Julie is visiting and taking her turn helping me and Jim. My siblings and parents are flying in from all over the country to help us. Blessed be the ties that bind.

Your Adventure, Too

Folks, Denise is unable to continue blogging for now. This is her husband Jim. We're back in the hospital, this time for an extended stay of several weeks. The chemo is not working as effectively as we have hoped, and her medical team is working hard to adjust her treatment. She is relatively comfortable (as comfortable as anyone can be in a hospital where they wake you up to give you a sleeping pill), and cheerful, with many family and loved ones at hand to support her. But we need your hope and prayers as well, so this is your "adventure in hope", too.

Pimple head

I've been wearing my wig exclusively for several days. The band that holds the wig on my stubby bald head is a bit tight and I feel that the top of my head is about to pop like a giant zit. Cancer is not at all romantic. When I don't wear my wig and my head is cold I wear a little soft cotton (ski-like) hat.

Home...for now

We're home from the hospital for a week or so until the next round of chemo starts (when I'll be an inpatient at the hospital again.) While I'm home I'm receiving antiviral chemo. A home health nurse came to the house this morning and taught Jim how to set up my chemo. I wear a backpack with the bag of medication and a pump that sends the chemo into my "PICC line" in my arm for 4 hours twice a day. The nurse also draws labs every day. At least I'm mobile and don't have to be in the hospital to receive my chemo.

As the Stomach Churns

Somehow I expected to be free from any nausea this far in the game since I didn't have any problem during the first week of chemo last time. However, the sick-to-my-stomach feeling has hit me in full force the past two days. The oncologists have some great meds for such occasions, but most put you to sleep as well as stop the nausea. I suppose that's not a bad combination. However, life goes by entirely too quickly in that mode. I've learned through this experience that life, husband, family (and my dog) are extremely precious to me.

You Give Me Fever

"Fever in the morning, fever all through the night . . ." (Peggy Lee, Fever)

This is Jim, providing a little context to the past couple of weeks. Following Denise's first round of chemo from January 12-16 her immune system crashed on Day 10 of the three week cycle. She spiked fevers as high as 104 degrees and spent a week in the hospital in Colorado Springs fighting the fever and waiting for her blood counts to recover. One night at home was interrupted by another fever so she went back into the hospital and was transferred up to Aurora. After another week of various scans and tests, her team of doctors determined she has a systemic virus which they've started treating in addition to the chemo for her CNS lymphoma. The second round of chemo which was supposed to have started February 2 was postponed until the 6th and is now underway. Actually, Denise is feeling much better (hence the resumption of her blog). I feel like the Phantom of the Opera, wandering around hospitals in my pajamas at night, frightening unsuspecting nurses.

Hairballs

I knew it would come to this: hairballs. Hair fell out on my pillow at night leaving bare spots on my scalp and hair in my mouth. I was like a cat coughing up hairballs...(ack, ack, ack...here it comes...gack-k-k-k).

I could run my fingers through my hair and clumps would fall out. I looked like a fluffy dandelion ready to have all of its seeds blown away.

Time to make the strike. The oncology department has a special tool they use for occasions like this...hair clippers!

I had prepared for this moment at least physically by purchasing a wig in advance. However, I wasn't prepared emotionally.

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...