Monday, December 20, 2010

Congratulations, Sis!

Our oldest daughter graduated with her Masters Degree in the Nurse Practitioner program on Saturday. We are very proud of her academic achievements and we are certain that she will provide compassionate, competent care to many patients. First-hand, she has witnessed, the vital role that nurses or nurse practitioners play in healthcare. Our family has witnessed outstanding nursing and we have experienced detrimental, dangeorus nursing. Our daughter pays attention to the needs of her patients' families as well. She has walked in those shoes as a family member of an ill patient for many years with me.

Her Dad wired her mortarboard with LED lights and she stood out in the sea of blue at the commencement exercises. Take a glimpse to see if you can locate our daughter!

Update & Request for Prayer: December 20, 2010

Radiation was canceled again today due to my low blood counts. I received radiation on last Monday and then the two other fractions were canceled last week. It is time for my marrow to recover and produce some cells! My WBC, hemoglobin and platelets are all low. Please pray that bone marrow failure is not the problem. You might recall after the first couple of weeks of radiation in November, I had a similar problem with all of my counts dropping. We requested prayer and they recovered. I am trusting they will recover again since marrow failure would be a very serious development.

Before having labs drawn, I knew my hemoglobin was down in the 8 or 9 range because I can always hear a whooshing of my heart or blood flow in my ears when my hemoglobin is in that range and that happened all night. And I was correct! Between the whooshing and the cough, I only slept an hour all night. The doctor said he had never treated a patient who knows her body like I know mine.

All we can do is to pray and to be patient. Our plan was to have the 600 cGy cumulative dose completed on New Year's Eve, but that is not going to happen. I am looking at mid-January now before completing radiation. Just going three times weekly for the treatment is very tiring. I believe this week is Week 7.

The cough continues. We have received no new answers from the tests ordered last week. The EKG will be repeated on my heart on Wednesday of this week and I will return to radiation on Wednesday. More Neupogen is ordered and if my platelets recover some, I will receive acupuncture on Wednesday.

Thank you for your continued prayers.

Wednesday, December 15, 2010

Looking for My Savior

This holiday season has been poignantly different for me. I have been too ill to enjoy the decorating and shopping and Christmas events that normally fill the calendar. Instead, hours commuting to the cancer center for lab work, radiation, doctors' appointments and tests have filled the calendar to over-flowing. Every year, it is my priority to retain my Christmas focus - Jesus IS the reason for the season - and I have usually succeeded.

This year, it hasn't been holiday hecticness that has distracted me, it has been the pain and suffering and all of the appointments. The fatigue from radiation has rocked me to my core. And today, I stopped amidst appointments at three doctors' offices, and realized I am failing miserably at remembering what all of this Christmas "stuff" is about. God, forgive me.

I am usually ever-listening to locate others in need at Christmas time, so that I can extend His love to them. My suffering and concerns have been looming so large this year, that, sadly, I have really just been thinking about myself. How did I ever allow leukemia to make me so inward looking, to the point where I am missing the blessing of helping others? I began reflecting and meditating on my shortcomings this Christmas season and asking for His help - looking for my Savior to lift my focus to Him and off of me and my challenges - they are all so temporary, as we know.

So tonight, on our drive home after hours in the car, shuffling from appointment to appointment, my husband said he was going to run in the grocery store to pick up something quick for dinner that he could prepare. I sat in the car while he shopped and God decided to drop me an opportunity to reach out to another in the spirit of Christmas. An elderly lady rode a motorized shopping cart out to her car parked across from us. She had several bags of groceries and crutches. I watched her hobble onto her crutches and I realized - God had just given me a way to serve Him. Exhausted, I left the warmth of the car and went to her and unloaded her groceries for her. I don't reflect on this to brag on my menial task, yet I reflect on it because today, God heard my prayers of sadness and repentance for not looking for ways to serve Him in the midst of medical mayhem. And He heard. And He answered. For the remaining ten days until Christmas, I will continue to look for my Savior and for His hurting people whom I can touch in any small way.

Update & Request for Prayer: December 15, 2010

I will play "catch up" on my blog. It has been a medically eventful week (what's new?) so I will review the week's events. This is Week 6 of splenic irradiation for me (I have received 325 cGy of 600 cGy). Currently, each dose (or called a "fraction" in radiation) is 25 cGy. I began at 50 cGy per fraction but my counts could not tolerate that dose, so it was reduced. I had hoped to finish by the end of 2010, however, radiation will continue into January.

I continue to battle the pulmonary problems of coughing, wheezing and shortness of breath. So, I had a CT on Monday and it did not reveal any pneumonia, tumors, leukemic infiltrates in the lungs or fungal masses. That was all good news, however, it leaves us with many questions about what is causing the shortness of breath and cough. PCP (a dangerous form of pneumonia) remains a possibility since indolent PCP often will not reveal itself on CT or x-ray. Today, upon recommendation of my NIH doctor, a PCR test for PCP was ordered. In the morning, I will use a nebulizer with sterile water to collect a sputum sample. We will take that to the hospital and that should give us an idea if PCP is contributing to the cough.

The CT did reveal some new cardiac concerns and degeneration of my spine. I have never had heart concerns, so that was quite a shock. Many of the drugs I have taken can be damaging to the heart. Today, my doctor asked the nurse to perform an EKG. The doctor said today's EKG results are very concerning but her regular nurse was not there and the lady who did the EKG was new to the machine. So, my doctor wants to repeat the EKG early next week when her regular nurse is there before we panic. I truly cannot believe with everything else I am dealing with that now I have a cardiac concern. I knew that I had degenerative changes to my lower spine, but was not aware of the changes in my upper spine. Steroids can be detrimental to bones and I now live on daily steroids due to the failure of my adrenal glands.

Now, onto some better news! I received radiation on Monday, however, my counts were too low and radiation was canceled. Today my WBC is 2 - that is low and most of you know I usually have a high WBC. So the radiation is definitely at work - really working! My hemoglobin was decent and my platelets remain low. The remarkable news is that Monday's CT results revealed that the spleen is shrinking in size and there were no enlarged lymph nodes in my chest (enlarged lymph nodes remain in my neck, abdomen and under my arms).

Most exciting to me is the fact that my lymphocyte percentage today has gone from 99% to 57% (normal being 15%-41%). My ALC (Absolute Lymphocyte Count) has decreased by 96% since beginning radiation! Before long, I will have a normal lymphocyte count and I have never achieved that with any of my past five chemo/immunotherapy adventures! Remember, lymphocytes are the blood cell line that is cancerous - precisely, my leukemia is a cancer of the B-lymphocytes. T-Lymphocytes are included in these lymphocyte counts that are being walloped and I need God to protect as many of the "good" T-Lymphocytes as possible.

A WBC is not without risks to me. I received a Neupogen injection tonight and will tomorrow. With a WBC this low, I am supposed to avoid crowds. However, that will be impossible as our oldest daughter graduates Saturday with her Masters Degree in the Nurse Practitioner program (in a crowd of thousands, so I will be wearing a pretty pink mask!) There is no way I am going to miss that special event!

So please pray for God to protect me from further infections; for my marrow to be able to begin producing cells I need; for my heart concerns not to be serious; and for strength and energy to enjoy our daughter's graduation and reception on Saturday.

Friday, December 10, 2010

Update & Request for Prayer: December 10, 2010

It has been a challenging week. I received radiation on Wednesday, however, the cough and breathing concerns continued to worsen. My sinuses worsened on Wednesday, so I had a sinus endoscope procedure on Thursday.

I awoke during the night very nauseated - the five consecutive radiation treatments have caught up with me again and the nausea and fatigue have returned. Since I was awake, I checked my e-mail and my trusted family doctor had emailed me at 11 PM last night to inform me that gram negative rods were growing out on the cultures from the scope. Gram negative rods are bacteria that can be highly dangerous to the immune compromised patient - some gram negative infections can kill in less than 24 hours. Included in the gram negative rod family is pseudomonas, which can be a life-threatening infection for people like me. I have battled it in the past and it is a formidable foe.

So this morning, my family doctor and infectious disease doctor decided to have me desensitized to another antibiotic - an oral one- to take while we wait on the lab to identify the gram negative bacteria (and we all know how many times the lab fails to provide vital answers to us). If pseudomonas or other bacteria are identified over the weekend that are not sensitive to the arsenal of antibiotics that I am taking, then I will be admitted to ICU for "big gun" IV antibiotics.

I arrived at the cancer center where I had my blood drawn and they installed a heparin lock in my arm so that I could go over to radiation without the IV pole. My counts were too low today, so radiation was canceled. My body probably embraced the break as it fights this infection.

Please pray for this infection to clear without a hospital admission to ICU. Please pray that the nausea and fatigue from the radiation will improve. Please pray that the radiation is beating back my foe, leukemia. Please pray that my breathing and cough will improve.

Monday, December 6, 2010

An Update & Request for Prayer: December 6, 2010

What a day! What a day! I arrived at the cancer center before 8 AM and I was there for over nine hours to receive my IVIG treatment today. I don't know why the infusion lasted so long - usually it "only" takes around 8 hours. Others, who have not had serious reactions to the IVIG, are able to receive it in fewer hours. However, I have reacted negatively to it in the past, so I patiently wait for it to drop, drop, drop into my veins. The treatment is cumbersome, not without risks, and very expensive ($10,000 per month), yet, my infection rate has lessened with the IVIG and my number of hospitalizations has decreased,

I saw the clock approaching 5 PM and knew the radiation center was going to close before I could arrive there for my radiation treatment. Thankfully, the kind staff waited on me and it was going on six o-clock before I finished for the day.

The gram stains from my lungs revealed that there are gram positive cocci growing out. The cough is still deep and annoying. I anticipate some form of action tomorrow - either a CT of my lungs will be ordered, an appointment with the pulmonologist, or a change to IV medications. Since my T-Cells continue to decline (due to the radiation), a serious form of pneumonia, PCP is always a suspect. I am hopeful that a bronchoscopy and/or hospitalization is not in my future. There are too many Christmas "to do's" remaining for me to end up in the slammer.

I was neutropenic again, so more Neupogen injections have been ordered. My counts were low but stable enough for radiation today. As of today, I have received 275 cGy of 600 cGy of radiation that is planned. Slow and steady win the race, right?

Please pray for the complicated concerns that daily threaten my life. I want to see improvement before Christmas! I long to feel better and stronger. Thank you for praying.

Perfect Tree Search

After a surprise eight-inch snow blanketed our property on Saturday,
 we ventured through the woods of a local Christmas tree farm
 to locate the perfect tree for our oldest daughter and son-in-law.
 It was a magical Christmas moment - a chill in the air, snowflakes drifting to earth,
and the crunch of eight inches of snow underfoot.
After much searching, she located her perfect tree.
I thought I'd share some photos of our morning.

Friday, December 3, 2010

Radiation Update: December 3, 2010

I have not been well this week, so I have lagged behind with my blog updates. With radiation and its effects on my blood counts, we were aware that my immune system would take further hits to its already fractured status. An infection in my lungs has taken up residence and has worsened all week. I saw my Infectious Disease doctor yesterday and he made yet another antibiotic change and if this infection worsens much  more, I know I will be admitted to the hospital for IV medications. I have used oxygen off and on all week and this morning I woke up to my chest rattling and whistling. Having heard about the "death rattles", I was a bit concerned to hear such a ruckus emitting when I exhaled.

This morning, I called my radiation oncologist and he ordered cultures, labs and we decided to go ahead with today's radiation treatment. I actually received all three of this week's treatments. It appears that I am tolerating the lower (25 cGy) dose better than the larger dose(50 cGy) I received the first week. My counts have not bottomed out as drastically with the lower dose, however, we are not seeing the improvements in counts either. All of this is such a delicate balancing act - using enough radiation to kill the leukemic lymphocytes without eliminating my vital neutrophils, T-Cells, platelets and red blood cells. As soon as my counts begin to recover, we strike with the radiation again, knowing the recovered counts will again fall.

A CT Scan earlier this week revealed that after four weeks of treatment, my spleen has not shrunk and remains the same in size. That was disappointing, yet, I still contend that it is too early to label this treatment a success or a failure. The lymph nodes in my neck feel smaller, however, the enlarged lymph nodes in my abdomen and around my aorta and heart were unchanged on the CT Scan.

I will receive some Neupogen injections over the weekend and then on Monday, I will receive my all day IVIG treatment at the cancer center followed by radiation. I had hoped to finish radiation before Christmas but that will not happen. I do not foresee an end to radiation until perhaps late January with Christmas Eve and New Year's Eve being sabotaged by radiation treatments.