December 22, 2010 - Update

I had a good night's sleep last night and slept well for a couple of good stretches. They are arranging for my discharge this afternoon. I will have my pain pump and hospital bed at home. I started radiation on Monday and will continue for a week or so. The doctor will evaluate before Tuesday on the effects. My pain level is 2 or 3 out of 10 most times and my appetite is good. They are giving me laxis for the swelling so I"m getting exercise running (very slowly) to the bathroom. My breath sounds are better and my shortness of breath is lessened. I"ll be on home oxygen as needed.
Lindsay is home for the week and my sister, Nora, is here for two weeks. Christmas will be spent at home.
I have received very good care at the hospital. It pays to know good nurses in different areas!! lol My friend Cheryl who continues to teach at PSU, has been a constant advocate and asked her RN students who work as hospital supervisors at night have included me in their routine rounds. What service! Of course, I already have a letter composed to the unit director complementing the best nurses. I am so proud of our profession.
I have had a few visitors while in the hospital but really postponing them until I get home. Thanks to those that came for a short to visit. Merry Christmas to you.

Love,
Ellen

Low Phase

December 9 was the beginning of a low phase. I have been having increased pain my left arm and back and that Thursday it came to a head. My pain was so bad that I went to Girard ER in the early morning for pain control and after a shot, they sent me to cancer center in Pittsburg Mt. Carmel (Via Christi) to Dr. Mathews, my oncologist. I was also very short of breath. After an x-ray and a PET scan, they discovered a tumor in the spinal coulmn which they anticipate is bone metatasis. I have been in Mt. Carmel for pain control for the last four days waiting for records from Barnes Jewish in St. Louis so that the doctor can develop a radiation plan. Radiating the tumor to shrink it should help the pain. My appetite has been very poor but has improved in the last couple of days. My treatment will be at least 10-14 daily sessions, which take only a few minutes. My family has surrounded me with care and my friends extended their offer of help and I will need them soon. I am hoping to be dismissed from the hospital on Monday after my radiation treatment.
Blessings to you.
Love,
Ellen

Done in Love

It's been over a month since I have added anything to my blog. I have used every ounce of energy to keep up the daily routine. Although, lately there has been little routine. I attended my sister "Geneva Convention" the second weekend in November in Comfort, Texas, near San Antonio. We had a great time together in a fabulous setting.
After I had such a bad reaction to the last combination chemo, IV and oral, my physician gave me a break and I haven't had any chemo since the week before Thanksgiving. What is really strange about my reaction is that I have lost my appetite. And if you knew my family history, you'd know that it takes alot to loose one's appetite. I managed to eat a good Thanksgiving dinner, but most food and odors cause me nausea. I haven't thrown up, but the queaziness in the stomach is enough to detour my eating. I do eat about one small meal a day and supplement with liquid shakes, like Ensure. I got very dehydrated the week after Thanksgiving, so took a liter of fluids at the cancer center and promised to drink more. Dehydration sometimes causes nausea, along with a slightly elevated temperature - which I had. So I am drinking more green tea, coke, 7Up, and water.
Only two weeks left of the semester and Marlin is planning to drive me to Topeka both weeks, I don't think I'm ready to drive that far by myself. I have only three lectures and some papers to grade, then turn in grades for the term. Graduation is Dec. 17 with Nurses' Pinning on Saturday the 18th. The senior class has asked me to be Mistress of Ceremonies for Pinning and I am so hoping that I can do this. It is an honor for me that the senior class would think so much as to ask me.
Marlin has been pretty handy around the house and we have Christmas shopping done, wrapped and under the tree. Just a few personal gifts I want to get for special friends and I'll be done shopping. Tosha and Lindsay put up my two Christmas trees Saturday after Thanksgiving - one large one in the living room and my Santa tree in the family room. The fireplace mantel has a simple pine garland with cones and I've put out a few things in the kitchen.
I am happy for the season and expect to maintain positive health. I am experiencing some highs and lows and need your support, love, and prayers for each phase.
I want everything I do to be done in love. I Corinthians 16:14
Blessings to you -
Love,
Ellen

Impossible days

Ixempra was given to me Oct. 29, IV at the cancer center. I started the oral drug -Xeloda - the next day, two pills twice a day with meals. Sunday, Oct. 31, the Ixempra "hit". The best way I can explain is that I had "instant arthritis" in every joint and could hardly move. I had horrible pain. I have been fortunate not to have any nausea or vomiting and that continues, but I am having difficulty with constipation (mostly because the pain drugs I take have this side effect). So I have been eating prunes, drinking more fluids, and taking fiber pills. (please don't send me your cures for this side effect - I have access to them all, remember I am a nurse??) The oncologist changed my pain pills to an even stronger pill, and I take it more frequently. I am still having pain from the hand surgery I had Oct. 4th, so I can be very short tempered, just ask Marlin. I can now relate to people who have stated that some impossible days, they got through them one hour at a time, one minute at a time, one second at a time - thanking God for the blessings in their life.
I did not go to Topeka this week, but worked via computer/internet for a few minutes at a time. Enough to keep up email and responding to students' questions. I am improving each day and I hope to get to Topeka this week. Marlin will have to drive me, cause I don't think I can drive 3 hours by myself. Marlin has been wonderful in caring for me, making sure I took meds on time and keeping me nourished and hydrated.
My routine weekly blood tests showed that my white cell count is very low, and so I should stay away from crowds, wash hands, etc, as this means I am more susceptible to infections.
I will continue to take the oral chemotherapy pills this week and next week, I'll have the week "off" before Thanksgiving. I will begin the "round" again Nov. 19th with the IV drug and two weeks of the pill.
I am thinking that I should include a verse on patience, but I am too impatient to look one up, so "God give me patience and give it to me now!"
I am thankful for each of the blessings provided to me.
Blessings to you -
Love to you -
Ellen

Being a Warrior!

October has been an eventful month. I cancelled going to Berlin, Oct. 12, as I had an "intuition". I grieved not going, I had planned and worked for the trip for months. However, by Wednesday (the day I was to arrive in Berlin), I was running a temperature, sweat though two sets of pajamas overnight and was coughing, coughing, coughing. I had gone to Topeka, since I didn't go to Berlin, so I could get some work done in the office. By Thursday afternoon, I was in bed. I called my doctor and he ordered a Z-pack antibiotics and I picked it up at Walgreens in Topeka. I stayed in and rested, took tylenol for temperature. Friends were great to bring me soup, juice and other comforts during the weekend. By Monday, I was not improving much and became very short of breath, so I called Marlin to come and get me in Topeka. I knew I couldn't drive. He and a friend came after me and I immediately went to the cancer center to see the nurse practitioner, who had an open appointment (after a cancellation) in the late afternoon. A chest x-ray revealed more fluid on the left lung. She changed my antibiotic and gave me a different pain pill for the pins and needles in my hand which in my estimation, was worsening.
Wednesday, I had another lung drain (thoracentesis) at Girard. (The same day the hospital had the "bomb" threat - that's another story, you'll have to ask me later.) This time the surgeon removed 1500 cc - twice as much as 26 days earlier. So -
I had an appointment with Dr. M, oncologist, on Friday morning. After some discussion, we have decided to change drugs. To put it simply, the current drugs were not working and the cancer cells were making a fluid tumor, as there were cancer cells in the fluid. The new drugs will be Ixempra and Xeloda. Ixempra is given IV every three weeks, and the Xeloda is an oral pill that I take daily for two weeks, then off a week. I start the new routine Oct. 29th. I have been so blessed with minimal side effects, I hope it maintains and that these drugs will kick some cancer cell ass!
Got my hair trimmed and dyed light red, so I can omit the wig if I want. Have not been wearing my prosthetic breasts either, because the bra strap was contributing to the arm pain. So I am taking on a WARRIOR appearance to match my warrior spirit. I may look for a breast plate during halloween, so I can really get into the role! LOL
With all I've been through, I am reminded of the blessings I have in my everyday life. My family checks on me regularly, sends me cards and flowers and my Girard friends have brought food and uplifting visits.
I am enjoying the fall weather and the color of the trees and foliage as time marches onto winter.
And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge -- that you may be filled to the measure of all the fullness of God. Ephesians 3:17-20.

Blessings to you -
Love to all,
Ellen

Beautiful day!

This posting will be short, as I am not to be typing so much yet. Friday, Oct. 1 I saw a neurologist about the pain in my arm, felt like electricity from my neck out my left hand. He diagnosed carpel tunnel, so on Monday, Oct. 4, I had surgery. The pain has lessened considerably, I still have numbness in my thumb and index finger. I was fortunate to get treatment rapidly after suffering with this for nearly 2 months! I am feeling good most days, just fight fatigue.
I am traveling next week for 6 days to Berlin Germany - work related, one day to tour and shop. I will have two colleagues traveling with me - trying to figure out how to pack "extra" light. I am blessed with family this weekend, as Lindsay and Aaron are home from Wichita and Grant and Tosha are having a yard party this evening. The weather is beautiful.
God's love paints a rainbow on the canvus of our days.
May He fill your life with beautiful reminders of His love.
Blessings to you,
Love to you -
Ellen

Long Pain and Sorrow Bear

For several weeks I have experienced pain in my left neck, shoulder, arm and hand, with numbness in my thumb, index finger and middle finger. I had complained to my oncologist and he suggested that the lymphedema (swelling) in my left arm might be causing some of the pain, along with carpel tunnel syndrome (since I had recently started school and began typing/computing more). So for these weeks, I have worn compression sleeves and gloves on both hands, worn a support splint on my left hand and eased the pain with ibuprofen and prescribed pain pills. I also used heat and ice packs and got a weekly massage, which seemed to help - at least it improved the lymphedema in my arms. On Friday, Sept. 17, I complained to my oncologist that the pain had worsened and that some days I could not function, the pain was so severe. He ordered a different pain pill and asked me to call him in a few days to report how the new pill was working. On Tuesday, Sept. 21, I called to report there was no improvement and that I wanted some tests done. I worried about a cervical spine bone spur or a slipped disc or that cancer had spread to the bone- something that was causing the numbness and pain. I was also becoming more short of breath and was coughing frequently. I had a PET scan on Thursday, Sept. 23 then saw Dr. M. on Friday morning to get the results. The good news was that the cancer had not spread to my bones, in fact, no significant changes were noted from the last scan in July. The bad news is that the fluid in the pleural space (lung tissue) had significantly enlarged and probably was causing the coughing and shortness of breath. Dr. M. recommended that I get the fluid drained immediately. A surgeon was called and a thoracentisis was done that afternoon at Via Christi in Pittsburg. A thoracentisis is a draining of the pleural space around the lung. It is done by inserting a needle into the back between ribs and drawing the fluid from the pleural space. The skin and muscle is numbed by lidocaine (a local anesthetic) before the needle is inserted. It is uncomfortable - and you are awake for the proceedure. Dr. H. removed 800 milliliters of fluid - about 26 ounces. I could immediately breath better, breathe without coughing and talk without coughing. I spent a short time in the recovery room and went home. I did have quite a bit of pain when I returned home, and I became short of breath, so I went to the ER at Girard for evaluation. The x-ray of my lungs was okay - I was afraid that the left lung had collapsed, which is a complication of thoracentisis. I was given a heafty dose of morphine and dismissed to home.
The pain in my shoulder and neck has lessened - however, my finger continue to be numb and painful. I am to have an MRI scan of my neck and head on Monday morning to seek a reason for the continued pain. I am taking less pain medication now and breathing much easier.
I was so fortunate to have my personal nurse, Kathy, to stay with me and Marlin, to support me during Friday's adventures. Lindsay was home Friday evening and spent the weekend pampering her mom. She and Tosha cleaned house, cooked, did laundry and put up fall decorations in the house. I am so very thankful to have such wonderful daughters! I love them both so much!
Today at church we had a baby dedication service for three families. What a blessing to share in the joy of new life! We sang the hymn "All Creatures of Our God and King" - one verse especially spoke to me -
And all forgiven tender hearts, forgiving others, take your part, sing praises, Alleluia!
You who long pain and sorrow bear, praise God, who knows your every care.
O praise God, O praise God, Alleluia, Alleluia, Alleluia!
Blessings to you -
Love to you!
Ellen

Praising Him for Today/1

Today I woke up pain-free. I have been having pain in my left arm, shoulder and upper back since vacation the end of July. Marlin and I decided to take the Pontiac for the 3,300 mile trip. It was fun to pack light and "live dangerously". Marlin enjoyed driving most of the way - I did drive a few hours. In my packing light mode, I forget to take my compression sleeves for my arms - I know to wear them when flying, but didn't think about the altitude in the mountains. I became sore and swollen (lymphedema) in my arms, very uncomfortable. Upon return home I began working on decreasing the swelling and the discomfort caused by the swelling. So for several weeks, I have worn the compression sleeves daily, decreased salt intake, drank more water, self-massaged the arms and gotten a professional massage weekly. I had chemo yesterday and a massage in the afternoon. After returning from dining out at Ernesto's with Grant, Tosha and Marlin, I took a pain pill and a sleeping pill and went to bed about 10 pm. I woke up feeling the best I have in months!!! Praise God!
Marlin and I took a trip to see National monuments and visit my sis and bro-in-law in Billings, too. We went through S. Dakota to see the Corn Palace in Mitchell, Wall Drug, Stugis (before 440,000 bikers arrived), Mt. Rushmore, Crazy Horse, the Billings, Red Lodge, Yellowstone, the Grand Tetons, Jackson Hole then home.
Depend on the Lord: trust him, and he will take care of you. Psalm 37:5
Blessings to you
Love,
Ellen

Celebrate!

I will praise you. Lord, with all my heart. I will tell all the miracles you have done. I will be happy because of you; God Most High. I will sing praises to your name. Psalm 9: 1-2

I had a PET scan on Tuesday, July 13 - the results are back and are much better than the scan I had in April. The spots around my breast bone (sternum) were smaller and less dense, the spot near my left kidney was not visible, the spot that I could feel in my neck is not visible and I can no longer feel it. PTL! The tumor marker number has decreased substantially - still not "normal" but heading the right direction. I have fluid around the left lung and that has increased a bit, and will continue to be watched closely. Generally, very good news. Please continue your prayers, positive thoughts and energy. I am forever grateful for all the support I receive.
Last week Marlin and I hosted my family reunion - from Thursday evening until Sunday evening, we hosted several meals and enjoyed the company of my family. My only surviving cousin from the Shipman side visited with us on Saturday. It was fun visiting with her remembering our childhoods and catching up family news. On Friday afternoon, my oldest sister, Luanne, hosted a "Girls' Tea Party" in my living room. The photo of the group is posted. We did invite Luanne's youngest grandSON - and he sat at the head of the table keeping all us ladies in check. We enjoyed two types of tea - complete with cream and sugar - and several sweet treats.
Sunday, my siblings and their families hosted a picnic for our extended family on my mother's side - the Stewart Reunion. There were about 64 people attending at Winston Park in Girard. My sister, Nora, from San Antonio stayed a couple of days after the crowds lefton Sunday to help me put the house in order. She and I went to Topeka so she could see my apartment and my office - something she has never been able to do - and then on Wednesday, I took her to the airport in Kansas City. It was a great weekend full of family and laughter.
Marlin and I are now preparing for a 10 day trip to Mt. Rushmore, Montana, Yellowstone and the Grant Tetons. We are taking our convertible to enjoy the scenery up close!
I am truly blessed - and hope you are enjoying the blessings provided to you each and every day. Appreciate those who support you and give them hugs every day. Thank God for your health and the pleasures you can experience during this life.
Blessings to you -
Love to you -
Ellen

God's Mountain

I had a PET scan completed April 13th that revealed some new activity in the mid-chest region and my blood tumor marker had increased. Dr. Mathew saw me the next week to discuss changing the chemotherapy medicines because he believes that the ones I had been taking were not working as well as they were previously - the tumor cells do become resistant to cancer medicines, just like germs become resistant to antibiotic medicines. So now my chemotherapy drugs will be Avastin (been using this) and the new one - Abraxane, or paclitaxel, protein-bound so that it attaches to the cancer cells better and hopefully kills them faster. I take Abraxane weekly on Friday and every third week, I will get both Avastin and Abraxane. So maybe Dr. Mathew is now starting at the first of the alphabet and working down!?? I will not get any weeks off, now, unless I request them, or my blood count is too low. My next PET will probably be in about 3 months.
After the first dose last week, I felt good - good enough to believe I could do major housework - cleaning floors and bathtubs - and Sunday I was so sore I couldn't get out of bed. So much for doing spring cleaning. I was having much pain in my arms and upper back and chest, especially the left side. After mastectomies, I was warned to not stress my arms, because the surgery can impact muscles of the arms and chest. So I am now a firm believer, that yes, indeed, the surgery does affect muscle strength and stamina. I have taken much of the advice about protection of my arms to task - I carry a much smaller purse, I don't carry heavy book bags (work related) - I bought a rolling case for work. I avoid wearing binding clothing or tight braceletes on either arm. My watch now spins around my wrist. Each day I must remember to care for myself.
Today, I am feeling well and uplifted. My family and friends remain supportive, loving and prayerful. I am grateful for my life.
I share with you a verse from a card I recently received in the mail:
There's not a moutain God cannot conquer,
There's not a storm He cannot still,
There's not a heart He cannot touch,
There's not a prayer He does not hear.
May you be encouraged knowing God is near and He Cares for YOU.
Blessings to you -
Love to you -
Ellen

March Blur

Happy Easter! I can hardly believe that March is now only a memory - such a busy month for me and my family. Grant and Tosha married on March 6th and several family members joined them the next week for a honeymoon in LasVegas. Tosha's sister, Tina and husband Josh, along with Lindsay, Aaron, Marlin and me spent 5 days seeing the sights in and around LV. We spent Sunday on a Hoover Dam tour. Most of the time we walked the LV strip to see the free shows - and some of them were impromtu - if you know what I mean. LOL! The water show at the Bellagio was my favorite - spectacular!
I traveled to Belfast, Northern Ireland for a 9 day trip for work, March 22-31. I traveled with a colleague and we had a successful trip. Washburn is planning student and faculty exchanges with three universities in Europe and Queen's in Belfast is one of the participating nursing schools. The weather was unseasonably cool, wet (rained almost every day), and it snowed the last day we were there - delaying flights out. I was really glad to get home.
I took chemo treatment on Thursday, April 1, no foolin', and I was really tired for a couple of days. I'm sure part of it was jet lag, but nevertheless, I was very fatigued and nearly slept all day on Saturday after treatment. I have a PET scan scheduled for April 13 and I am anxious about it. Results will determine if the chemo drugs continue to fight the disease. I am having pain in my left shoulder, which worries me, but the physician doesn't seem too concerned. I'll have another treatment next Friday, April 9, then the scan the following Tuesday.
Only 6 weeks of school left - hard to believe, it goes so fast! I plan to teach an on-line class in June.
And a verse for Easter Sunday -
Most assuredly, I say to you, he who believes in Me has everlasting life. John 6:47.
Blessings to you -
Love to you -
Ellen

Cold weather and a cold

It has been an unusual winter - snow in San Diego, Dallas, South Carolina?? I am growing tired of the cold weather and the snows we've experienced. Last week on Tuesday, I arrived in Topeka to a slight snow with some slick spots which propelled my red Toyota into a parking gate at work - and a little tiny bump on the front of my car caused $2,000 damage! Luckily, it took only a few days to fix and I'm back in the driver's seat again. And my Toyota isn't on the recall list!
My treatment has been stalled. I received treatment three weeks ago (Avastin, Carboplatin & Gemzar) and got along well, however, the next week my blood counts were too low to get treatment. White blood count is particularly affected and this makes me susceptible to infections. So this week, I got a cold, which cancelled treatment today. I've spent most of the day in the recliner cat-napping with my cat, Cookie, on my lap keeping me warm.
I have felt good overall. I continue to travel to Topeka to teach, three to four days a week. I am planning a trip to Belfast in March to make arrangements for faculty and student exchanges with nursing schools in Europe.
Just two weeks until Grant and Tosha get married. Lindsay and Aaron will be here this weekend to help with some preparations. We'll be printing programs and other last minute things. Our family was at Lindsay and Aaron's last weekend for Valentine's weekend. We had fun shopping and eating out - spending time together.
Hope you are keeping warm and enjoying the day.
Blessings to you -
Love,
Ellen

Good News

I am praising God today and thanking everyone for their prayers. The results of the PET scan last week were very encouraging. The scan in October revealed that cancer had spread and the scan from last week showed a marked decrease in number and size of tumors. Some are so small they cannot be seen on a scan (pea-sized cannot be seen). My oncologist believes this chemo routine is working. I know it is chemo - AND the power of prayer that created the miracle. Thank you, Lord, for hearing those prayers!
I did get chemo again today and will again next week. I see the oncologist January 29th to determine the protocol and how many more rounds before the next scan.
I am feeling very good - especially after this news, but I did have very positive thoughts regarding this scan and was less anxious to hear results. I had the peace that passes all understanding.
I will return to Topeka this week for faculty meetings at Washburn. Classes begin next week.
I am enjoying a very fun distraction - wedding planning. My son, Grant, is engaged and will marry Tosha on March 6 in Girard. Tosha will be a wonderful addition to our family and we lover her very much. I am making her veil and the flower girl dress. I am thoroughly enjoying all this!
But let all those rejoice who put their trust in You; let them ever shout for joy, because You defend them; let those also who love Your name be joyful in You. Psalm 5:11
Blessings to you!
Love to you -
Ellen

The Promise of a New Year

I had chemo last week, just the Gemzar. My blood counts were a little low, so the dosage was adjusted lower to help decrease the side effects. I have felt good, some fatigue, and a few minor nosebleeds, but I can function pretty good and keep up with the house, cooking, and doing some shopping!! Grant, Tosha, Marlin and I went to Joplin on New Year's Day for a little shopping trip. Grant and Tosha found some bargains, and I enjoyed being with my family.
I have blood tests tomorrow (Monday, Jan. 4) and a PET scan on Thursday Jan. 7th. The PET scan will help determine if the chemo is working and how many more treatments will be planned. Please keep me in your prayers.
I provided Children's moment in church today - talked about a new year being full of surprises, anticipation and expectations. Although we hope for good things, tough times present themselves and we depend on God for guidance. May all those reading this be richly blessed in the new year.
Depend on the Lord, trust Him, and he will take care of you. Psalm 37:5
Blessings to you -
Love to you -
Ellen