jm's Adventure with Multiple Myeloma

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Saturday, September 28, 2013

Final Audio Remarks by Frank Malkiewicz at Judy's Graveside Service September 28, 2013

Song "On Eagle's Wings" performed by Kitty Cleveland

Audio Remarks by Ali Tipsword at Judy's Graveside Service on September 28, 2013

Audio Remarks by Sherry Webb at Judy's Graveside Service September 28, 2013

Audio Comments by Lesley Szabo at Judy's Graveside Service September 28, 2013

Audio Remarks by Kisha Conroy at Judy's Graveside Service September 28, 2013

Audio Remarks by Jane Koeckeritz at Judy's Graveside Service September 28, 2013

Audio Remarks by Lew Pence at Judy's Graveside Service September 28, 2013

Audio Remarks by Earl Lockie at Judy's Graveside Service September 28, 2013

Audio Remarks by Robbyn Wacker at Judy's Graveside Service September 28, 2013

Song "Zip-A-Dee-Doo-Dah" by James Basket (from 'Song of the South')

Audio Remarks by Jani Malkiewicz at Judy's Graveside Service September 28, 2013

Audio Remarks by Jeff Malkiewicz at Judy's Graveside Service September 28, 2013

Judy's Graveside Service September 28, 2013

About 100 people gathered at Mt. McCaleb Cemetery in Mackay, Idaho for the graveside service of Judy Malkiewicz.  The weather cooperated, the sun shone and the wind died down.  A good day for a funeral.

Judy's photo, a favorite of all, and her hand picked and self-designed headstone.  Judy was creamated and her ashes were in the wooden box.  The beautiful flowers are from friend John Powers (left) and the Lisa, Randy and Erin Mathews (right); the stunning mums were hand delivered by Faye and Bruce Hummel.
 Col. (Ret.) Frank J. Malkiewicz and daughter Jani, just prior to the beginning of the service.
 It was Judy's request that Kemmer attend the service.  She did great and visited with lots of folks.
 Robbyn and Jani and Jeff and his wife Carol Kaye prior to the service.

Robbyn, Jani and their niece Kisha Wacker Conroy.  Kisha flew in the night before from Austin, Texas.

Faye and Bruce Hummel with Kemmer.
 Friends from Colorado (left to right): Faye Hummel, Robbyn Wacker, Bruce Hummel, Jani Malkiewicz, Chuck and Ann Henderson, and Jane and Steve Koeckeritz.
 And you can't take a group photo without "jazz hands", right Jude???  Check out Kemmer!!!
 Colorado friends Patti and Ali who drove in AGAIN from Greality!
Robbyn gives Kemmer a kiss.....such a good dog!!!

Wednesday, September 25, 2013

Judy Malkiewicz 1950-2013

Judy Malkiewicz passed away at her home on September 25, 2013 in her beloved Mackay, Idaho after a 2 1/2 year battle with high risk Multiple Myeloma.  Judith Ann was born December 8, 1950 in Fort Dix, New Jersey to Frank and Marjorie Christine Malkiewicz.

Judy graduated high school in 1969 from H. H. Arnold High School in Wiesbaden, Germany and earned a Bachelor’s of Science in Nursing from the University of Northern Colorado in Greeley, Colorado in 1973.  She was employed as a registered nurse at Children’s Hospital in Denver, Colorado following graduation. In 1975, Judy began her 29-year teaching career at the University of Northern Colorado School of Nursing where she retired as a Professor of Nursing in 2004.  Judy earned her Masters of Nursing in 1975 and PhD in Nursing in 1991 from the University of Colorado. 

The thread that ran through Judy’s entire life was the intensity and dedication she brought to any task at any given time.  During her time at the University of Northern Colorado, she was a dedicated mentor and professor – and Judy challenged and expected much from her students.  Judy helped educate hundreds of nurses, as many would attest when chance meetings would occur in various hospital settings.  Their eyes would light up when they talked about what a wonderful professor she was.  In addition, Judy was regarded by her peers as one of UNC’s top professors of pediatric nursing.   While at UNC, she was awarded the M. Lucile Harrison Award, a prestigious teaching award recognizing her outstanding contributions to nursing education and teaching.  Judy was the first founding member and president of Sigma Theta Tau, Zeta Omicron Chapter at UNC, an international honor society for nursing research and professional development.  Judy loved her job, guiding and mentoring future nurses in the art and science of nursing.

When not at work, she was always exploring, doing and engaging others in some adventure.  Creating Christmas ornaments by the hundreds, making hundreds of handmade greeting cards, training for and running in a marathon, researching her family genealogy - you knew if Judy was involved, she was going to do it 110%.

When Judy retired in 2004 to Mackay, Idaho, hometown of her grandmother and the birthplace of her mother, she became a vital part of the Mackay community where she became immersed in the daily life and brought that same enthusiasm to her new community.  During her time in the Lost River Valley, she was a Mackay Food Bank volunteer, helped edit and publish a book called “The Mackay I Remember” with John Powers, was a former president of South Custer Historical Society, volunteered at Mackay Elementary helping at preschool and recognition assemblies, served as former Secretary of Mackay Women’s Club, volunteered at the annual Custer County Fair, was a member of Mackay’s Lion’s Club, was a member of American Legion Auxiliary and Poppy Coordinator, created and contribute daily to the “MacKay, Idaho 83251 Blog” and initiated putting Mackay’s families laid to rest in the Mount McCaleb Cemetery into “Find a Grave” and organized Mt. McCaleb Cemetery names and identification of veteran grave sites.  She was especially proud of her Mt. McCaleb Cemetery plot map that she created and used to help people locate the graves of their loved ones.

Judy also created a blog about her illness, “jm’s Adventure with Multiple Myeloma,” which was read by thousands of people in the U.S. and around the world.  Her daily updates were graphic, medically thorough, often humorous, and filled with many many photos that allowed her family, friends, health professionals and other’s who suffered from Multiple Myeloma with endless information about this disease.

No remembrance of Judy would be complete without mention of her love of photography.  She documented and recorded the beautiful Lost River Valley as well as friends and family and her journey fighting high risk Multiple Myeloma.  Judy felt strongly that the pictures could document important elements of our life, from the mundane to historical facts of life in rural America or the details of what life is like fighting Multiple Myeloma so others could learn from her experience.  

Judy is survived by her father Frank J. Malkiewicz, her siblings Jeff (Carol) Malkiewicz and Jani (Robbyn Wacker) Malkiewicz, her nephew Nicholas Malkiewicz, her Uncle and Aunt Walter and Hedwig Dynia, numerous cousins and her beloved golden retriever Kemmer.  She was preceded in death by her mother Marjorie Christine Lundberg Malkiewicz and niece Lindsay Katherine Malkiewicz.

Graveside services will be held Saturday, September 28, 2013 at 1 p.m. at the Mt. McCaleb Cemetery in Mackay, Idaho. 

In lieu of flowers, contributions can be made to the one of Judy’s favorite charities, the Mackay Food Bank, c/o Otto Higbee, P.O. Box 133, Mackay, Idaho 83251.

Our Saddest Day - September 25 2013

It is with profound sadness that we, Jeff, Jani, Robbyn and Frank, must report that our sweet Judy has died.  She died at 1:15 am on Wednesday, September 25 2013 in her own room, in her own home, in her beloved Mackay, with Kemmer by her side.  jm's Adventure is over.  Services are pending.

Thursday, September 19, 2013

Relapsed High Risk Myeloma Update September 19 2013

It's a beautiful day here in Mackay, Idaho.  Blue blue sky with just a few whispers of white clouds.  It's the kind of day where Judy and I would have found some kind of adventure.  Maybe a walk on the Mine Hill with the Triever Trio, perhaps a drive in Jonah with the pups, or maybe one of our favorites, the quest for Shay railroad spikes up on the Trestle road.  I will sorely miss those times with mine sister!!!

Memories of this past week are quickly turning into a blur.  Initially Judy was spending day time hours on her sofa and Jeff and I would move her back and forth to her bathroom with a wheelchair with great difficulty.  Moving her about seemed to cause great pain.  A few days ago, when she quit asking for sofa time, she has remained in her hospital bed in her bedroom and using the portable bedside commode with much less movement.  

However, the bowel movement thing has definitely turned ugly.  She has had no bowel movements since last Thursday, so on Tuesday, hospice nurse Mary advised us to give 2 T. of Milk of Magnesia.  On Wednesday, after displaying great abdomen pain, we gave her an additional 2 T. of MofM.  Last night at 9pm, she awoke and said she had to go to the!!!  We got her on the portable commode, however in her confusion she saw this as a chair and not a commode and it took alot of sibling yelling to get her to "let go".  Then while trying to clean her, she could not longer help us hold her up and Jeff could no longer hold her up and she crumpled to the carpeted floor.  We straightened her out and decided we needed help and called Judy's great friends, Wayne and Shirley Olsen.  They came right over and Wayne devised a way to get her on a sheet so that we could lift her back onto her bed.  Needless to say, it worked and Judy fell fast asleep.  This morning it appears that none of her parts are broken, as she was able to help us with a potty break.

After starting with a 50mcg/hh Fentanyl patch and supplementing this with 4-6 hours doses of 2.5 mg of Oxy IR, we added an additional 25mcg/hh Fentanyl patch and now have not needed to add any Oxy.  However she still indicates she is in much pain when we try to move her.  After she is laying down the pain seems to dissipate for which we are indeed thankful.

Judy's cognitive awareness continues to wane.  We have had numerous small exchanges when she asks us "how did this happen to me" or "how did I get this sick"?  I have explained numerous times about the multiple myeloma and her treatments and sometimes she remembers and sometimes not.  She also asks when we are returning to Twin.  All of these questions remain extremely difficult to answer and none seem to resolve her questions.  This morning she asked Jeff, "do you think I am going to die" and he replied, "yes, probably so," trying to explain what's happening to her.  Just hurts your heart to see sadness and tears in her eyes.

Jeff is the sweetest man I know.  He is so tender and loving with Judy.  I love him so and also know how much Judy, my father and I appreciate his love and help through this time.  I could not have done this without him.

Judy is sleeping much of the time now, probably 90 per cent.  She drinks some liquids through a straw, Kellogg's Protein Shake and juice.  She has not had any solid food since Tuesday when she had some cottage cheese.

Thursday, September 12, 2013

Relapsed High Risk Myeloma Update - September 12 2013

Hello everyone, Jani here again.  First off, I would like to thank all of your for kind, loving and generous comments for Judy and our family.  We are so appreciative. 

It's Thursday now, and much and maybe not so much has happened since my last posting.  Faye Hummel, one of Judy's closest friends flew in from Colorado on Monday afternoon and stayed the night, leaving at o'dark thirty Tuesday morning (5am) to return to obligations in Colorado.  It was wonderful having her here, I think Judy was sometimes aware, however, now she does not remember.  We have successfully weaned her off almost all the Oxycontin and Oxycodone and she is now relying on a Fentanyl patch (50 mcg/hh), which is applied every 72 hours, for pain management.  She has some very lucid moments and at other times just wants to know "what has happened to me".  We, including our brother Jeff, have had numerous conversations about what is next.  She will ask when we are going to Twin Falls and I have explained that we no longer will travel there, and then explain to her about her condition.  Last night before going to bed, while sitting on the toilet (we are doing ALOT of sitting on the toilet, but that's another story), she asked again and I told her about her 100% plasma cells in her bone marrow.  She said "I am going to die" and we replied yes, but we were both here with her, to keep her comfortable and out of pain.  Jeff told her that it would be ok to let go and she seemed to listen and process this info the best she can.  This talk brings forth great emotion from Jeff and I and I feel like Judy feels that too.  It's a most difficult conversation, but we will continue to help her understand the best she can.

Judy has had some small meals everyday - french toast in the morning, cottage cheese, fruit cocktail, pudding.  Then yesterday afternoon she announced "I am hungry."  She has a very difficult time finding the correct words for things, so Jeff and I do a lot of guessing.  She kept saying she wanted soup yesterday, but I brought her soup that was not what she wanted.  We finally settled on a chicken sandwich, of which she ate half.

Judy spends her days in her favorite location in her house - her SOFA.  We move her back and forth to the bathroom with a wheelchair.  And then in the evening, we move her to her hospital bed.  This bed is from the Lost River Hospital in Arco.  It's not so modern, but does have an electric lift for the head/foot and some side rails.  It's much easier than her own bed.  We have placed her personal bed next to the hospital bed in her room and I sleep in there with her in case she needs anything.  The 1:30am potty stops are killing us!!!

To be true to the character of Judy's blog, I would be remiss if I did not mention her bowel movements....oh joy.  She went 5 days without one, but there was success when Faye was here.  We had added Senna and Milk of Magnesia and that did the trick.  However now, she has had 2 days of diarrhea, which is hard on all of us, but you do what you must.  Just be thankful, we have added no photos of this....Judy would have!

I have become an expert at checking her glucose and administering her insulin.  This may not seem like much, but for me it's a big thing...I have always had a huge aversion to I am rather proud of myself!

Hospice care includes an aide on Monday and Thursdays and the hospice nurse comes on Tuesdays and Fridays.  They have provided supplies like underwear, pads, wipes, the bed, commode.  In addition, they provided the Fentanyl patches which arrived on Monday morning.

Thanks again for all of your loving support.  I will attempt to post more as I can.
Judy and her fellow Sag (Sagittarius), Faye Hummel.
Brother Jeff and father Frank visit with Judy on the her SOFA, with Zoe and Kemmer nearby.
Judy on her hospital bed in her bedroom.
Judy giving Kemmer a pat - how could I not take this photo!!!

Sunday, September 8, 2013

Relapsed High Risk Myeloma Update - September 8 2013

Hello everyone, this is Jani, the sister, reporting.  I know many of you have been concerned about Judy's missing blogs.  And yes, as you probably have concluded, things have changed. 

Last week Judy was scheduled for the final week of her 3-week cycle of chemo.  We were unable to complete it the week prior because her ANC was too low.  So MSTI scheduled her treatment for 7:20am on Thursday.  We were up at 4 am, and Judy started to complain of more back pain at this time.  We loaded up and were on the road at 5am, but by 6:30am she was EXTREMELY uncomfortable and complaining of pain.  At this time she had been taking 10mg of Oxycontin Controlled Release two times a day.  We would then add an occasional 5mg of Oxycodone Immediate Release and she had at the most taken maybe 3 during a 24 hour period.  So not that many pain meds.  After arriving at MSTI at 7:15am, she was barely able to walk inside.  MSTI nurses immediately did her blood draw and included a cardiac enzyme test.  Then she had a EKG.  Both those tests were normal, but her pain continued.  Judy's Doctor, Dr. P, was not on duty Thursday, so they called Dr. Simonton to assess her.  She was insistent that Judy go to the ER for additional tests.  At first we thought it might be her episodes of pain that move around her chest (very severe but dissipates usually in about 45 minutes).  However her pain now included chest and neck pain so off we went to ER.  After another normal EKG and chest Xray, they attempted a CT scan but she could not tolerate laying flat.  After a few hours, a "Hospitalist" physician came into to talk to us.  He recommended hospitalizing Judy to get her pain under control, which it definitely was  not.  He also did not think it was a clot in her lung (the CT scan would have helped determine this) since her lung function and oxygen levels were good.  He believed that her myeloma had simply proliferated into all of her bones and perhaps she has numerous micro fractures.  He also brought up hospice and the decision whether to continue to pursue treatment - chemo and transfusions.  He told us we could discuss this with the doctor on the floor.  So off we went to the 4th floor of the St. Luke's Hospital in Twin Falls.  Still in great pain, they administered 20mg of Oxycontin Controlled Release and then gave her a 50 micron push of Fentanyl.  After some additional doses of Fentanyl, her pain was under control by late afternoon.  I left her around 10pm and stayed in a motel that we had previously reserved for our chemo stay.  When I returned on Friday, she was still comfortable and we discussed with the doctor, the hospice option along with discontinuing treatment.  Judy chose the hospice path.  At least twice during the day, I would ask her if she understood that we were stopping treatment and that included chemo and transfusions, and she indicated that she understood.  Judy was very groggy at this time, but I believe she did understand the choices she was making.  She also told the doctor that she would like to stay in the hospital for a second night.  Thank goodness for our good friends Shirley and Wayne and our father Frank....they all pitched in and took care of our special Triever friends, Kemmer, Kady and Zoe.

Judy remained relatively comfortable in bed throughout the day.  However in motion or attempt to get out of bed is very painful.  Her pain returned at 5pm on Friday, and I discovered that the nurse had only dispensed the 20mg of Oxy CR and not added any additional Oxy IR, which had been prescribed for every 4 hours.  So after an additional Fentanyl push and Oxy IR, she was feeling more pain long as she didn't move.

Saturday morning after I arrived, she had a shower and we prepared to depart for Mackay.  Judy is unable to walk more than a couple of steps now but I managed to get her into the front seat of Bart in a reclining position and off we went.  We stopped in Arco for another dose of 10mg Oxy IR, and we arrived home about 1:45pm.  I did manage to get her into the house and on the sofa, but I should have had a wheelchair ready....something Shirley had suggested.  She slept most of the afternoon and remained very very groggy.

I had contacted the Lost River Hospice and had our first assessment at 3:15pm Saturday.  Basically, they will provide meds and equipment.  A hospice nurse will come 2-3 times per week along with an aide 2-3 times per week.  Our brother, Jeff arrived from Colorado around 4:30pm and is now staying at Judy's with me. (He usually stays with our 92-year old father at his house.)  

Judy has eaten some small meals and is drinking, however her mobility is a BIG issue.  We do have a wheelchair and hospice will bring a hospital bed and the like sometime on Monday.  Last night, my plan was that she sleep on her sofa.  That was not her plan.  So after a great deal of hollering and tugging and prodding, I got her into her bed.  Remember, Judy weighs about 185 pounds now and with her own inability to move herself, this is QUITE a challenge.  (You are all asking, where was Jeff  - well he had gone to bed and I was kind of in the moment with Judy....remember the hollering part!!!)

She slept pretty well all night and I woke to give her the Oxy IR at 2:30am and 6:30am.  I have reduced this to 5mg in an effort to see if she is a bit more lucid without sacrificing pain control.  It is a balancing act.  I did inquire with the hospice nurse about Fentanyl patches.  This was suggested by our friend Randy, who is an anesthesiologist, and the nurse thought this a good idea which could help Judy's lucidity.  We cannot get any until Monday though.  Right now the 5mg seems to be working along with the 20mg Oxy CR twice a day and she is not quite so out of it.  I have read her your messages and emails and will continue to do so.  Sometimes she gets them and sometimes she just closes her eyes.  She is sleeping now on the sofa and seems comfortable. 

I am so glad Jeff came so quickly.  He and I get along great and he will help in anyway he can, I know.  My life partner, Robbyn will come at a moment's notice, we are still just trying to figure when that is.....big question????   Just a day at time!

Thanks again for all of your comments, texts and emails.  I have shed many a tear while reading them.  Thanks for your love and support.   Jani

Saturday, August 31, 2013

Relapsed High Risk Relapsed Myeloma Update - August 31 2013

Woke this morning feeling pretty well. Waiting for golf to come on tv. I'm made good progress with the genealogy.  All I have left to do is re-write the front end of the Hazel Theora Jensen Anderson  Lundberg story and I think it will be ready to mail to my age appropriate  Linda's. One lives in Idaho, Linda Bingham and one lives in Utah, Linda.

Thursday, August 29, 2013

Relapsed High Risk Myeloma Update Update August 29 2013

My appointment at St. Luke’s Hospital MSTI wasn’t until 12:30 PM today, which is unheard of since my appointments are usual at o’dark thirty in the mornings. Shirley and Wayne Olsen were left to watch and feed the dogs while we were gone.

Tested my blood glucose on the way to Twin Falls and only needed 1 unit of insulin for a snack of a cheese stick and crackers.

Made it to Twin Falls in time to have my hair cut at Great Clips. It will look better tomorrow after a blow-dry hair and a session with the curling iron.

Once I got to St. Luke’s Hospital MSTI, I tested my blood glucose and AGAIN, only needed 1 unit of insulin.

RN Melisa accessed my Bard Power Port and sent my CBC off to the lab. While I  waited for the results, Jani went to the hospital cafeteria and got a hamburger and fries for me and a taco salad for you herself.

Today’s lab results were not happy…..

My CBC was only 2.5 (norms 4.5-11) with an ANC (Absolute Neutrophil Count), of only 0.75 (norms 1.9-8.8). Dr. Padavanija was not in the office today and had left instructions that I could not have my intravenous carfilzomib this afternoon unless my ANC was greater than 1.20 – so, that meant no IV chemo this afternoon, nor tomorrow, Friday, Aug 30 2013.

My Hg was 8.7 (norms 12-15), so, I might be headed for a blood transfusion.

My platelets were good at 19 (norms 140-440).

Dr. Padavanija will be back in her office on Tuesday, Sept 3, 2013. The nurse consulted with Dr. Manning and he said I should have my blood tested at Lost Rivers Medical Center in Arco, Idaho on Tues, Sept 3, 2013 and FAX the results to Dr. Padavanija. I need to hold my oral Pomalyst 2 mg also.

This will delay my scheduled bone marrow biopsy test scheduled on Sept 10, 2013. In fact, this will delay everything!

This is a photo of Jani with her “India apparel on”… at least, that is my guess of her appearance.

Jani went to Walgreens to change out the diabetic supplies to the type my Anthem Blue Cross will cover while I waited in the Infusion Room. Then, Jani went to Walmart to buy Protein Shakes and a belt for me.

We departed Twin Falls around 2:15 and were home in time to feed the dogs!!!!

Tuesday, August 27, 2013

Relapsed High Risk Myeloma - Update August 27 2013

Woke this morning feeling much better. My gait is improved and I can move from the sofa to the sitting position with a lot more ease.
I'm getting used to checking blood glucose  4 times a day and and at bedtime. I have not needed extra Novo insulin (fast acting insulin) more than 2-4 times daily. And at bedtime, I have to take 10 units of Lantus (long lasting) insulin.

Sunday, August 25, 2013

Relapsed High Risk Myeloma - Update August 25 2013

We had a huge rainstorm yesterday,  but we we really needed the moisture. Kemmer was frightened and so was I. So, we put Kemmer in her Thunder Shirt.  The Thunder Shirt really helps but not 100 percent.

Woke with left sided sinus headache and a headache over the bridge of my nose. 

Jani is weed eating the lawn and I'm still on the sofa. My leg pain is killing me and I'm just taking the same amount of pain med at the same time each day.

My gait is OFF and I'm having a hard time with my gait and balance.

Our friends Patti and Ali departed around noon for their return journey to Greality.  Sure was nice of them to come and we had some fun too!!!

Saturday, August 24, 2013

Relapsed High Risk Myeloma - Update August 24 2013

Really had a good day. We got the 4-wheelers and coolers ready or a trip up the Mine HIll at 12:02 PM . We made a bee-line for the Shay Trestle returning down the MIne Hill at 2:30 PM. It had just started to rain lightly. 

Ali and Patti rode together, while Jani rode with Zoe and I rode with Kemmer. 
I almost killed Kemmer and myself near the double tramway...I was watching 2 hunting dogs with their owners when I veered off into the right sided-barrow pit. It was a big jump and almost knocked both Kemmer and I off the 4-wheeler. I'm not proud of the maneuver. 

We continued on to the Shay Trestle road and stopped for a photo op. 

I slept in and and I felt fine. I haven't had a nose bleed and all is well.

Continue to check my blood glucose 4 times a day and bedtime. My blood sugar has been running 223, 274, 272, 231, etc. My nova insulin needs are running between 2-4 units. It is difficult being a diabetic and I'm testing all the time.

Friday, August 23, 2013

Relapsed High Risk Myeloma - Update August 23 2013

BMW 1996, Jani and Patti at Craters of the Moon National Park, Idaho

Our friends Patti and Ali arrived from Colorado, driving their newly acquired 1996 BMW Z3.  They will drive on with us to Mackay.