In God's Hands

Ecouragement Received

Mr. Carl & Myeloma — Posted by cndgsnr @ July 07, 2008 15:48
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How BLESSED I am to have this network of Christians.  How BLESSED Carl is!  Within moments of publishing my last post, I had three encouraging comments to print up for Carl.  We were on our way there and I was delighted to be the deliverer of such love and encouragement!  A great big thanks to all of you who have responded.  Please keep them coming.  I will continue to print them up and share them with him.  Carl is not a very talkative type, but with this "Thank You!", I know that he appreciated my efforts and your words.  He read all of them right away.  Because I wanted everyone to see how God works through all of you/us, I am going to post those comments here.  Some of them have been edited to remove information that spammers might take advantage of.

If you go to www. mm.acor.org, you can read the very inspirational survivor stories written by MM survivors.......It was the first place that gave me hope when my husband was diagnosed in '06.......Also, you can join the MM listserve which has truly been a lifesaver for my husband....

Hello, Carl..I am a cancer patient and just wanted to let you know that I am praying for your healing...the Lord has been so gracious and good to me through my ordeal with 3rd stage ovarian cancer...I have left the battle with Him and He's given me wisdom on how to help myself get stronger through all the surgery and treatments...I did start eating more fruits and vegetables and drink mangosteen juice which has done wonders...after all, He has created it! It gives you back that lost energy and fights the battle from within...I am now free from cancer and am here to help you in any way that I can. I'll pray for you that the Lord will fill your heart with His love and mercy for He is good! If you want to, you can email me anytime...I am here for you...Remember, God loves you! - gloria - Psalm 100:5 "For the Lord is good; His mercy is everlasting, and His Truth endureth to all generations."

I'm sorry to hear of your father-in-laws diagnosis. My husband (59 today!) was diagnosed 7/17/07 - you will remember the date always. He was in stage 4 when diagnosed - only 3 stages with MM, so he was close to death. Today he is in complete remission and doing whatever he wants. I wouldn't have believed it 6 months ago. Still some back pain from the bone deterioration, but not disabling. We have been thru Velcade/dex(chemo) and stem cell transplant. Our support group has 4 MM survivors. One stable after 15 years, 1 never in remission after 8 yrs and doing ok, 1 (4 yrs) going back into remission. DO NOT GIVE UP HOPE. Many people respond very well to treatment. Feel free to email me for more info and what he (your family) has in store. I would be glad to relate what to expect. Best wishes to you all and God bless you. He will guide you to where you need to be - he did us. Monica

Carl, I found out in 2001 that I had MM. I have been on chemo for about three years:First a seroid...then Velcade and now Revlimid. The MM caused kidney failure, but with Revlimid my kidneys have imporved. I have no side effects with Revlimid. I go to the resturant for coffee and to visit then come home and do some thing around home.Jesus gives heaven to look foreward to,but I want to live as full a life as I can while here. With some chemo I found eating a slice of dill pickle with each bite made food like chicken go down better. tiegs.....

I sent another message - it was blocked. I'm trying again. Try to get Carl on Lexapro - he doesn't know he is depressed. My husband didn't either. REALLY helps! Do research for them. Give them as much support as you can. Check out the leukemia & lymphoma society website-WWW.LLS.ORG - 2 financial aid programs well worth applying for. We went thru stem cell transplant process - I'll be glad to tell you about it. His doctor is right-a hobby will get his mind off cancer for short times. Even reading (Bible)is a good hobby. Remember God is in control always. Stay strong. Many are praying for you. monica

I am not a patient or a survivor, but I can and will Pray for you and your family.  Deacon Farley

I didnt see in your posts how old Carl is. I have had Myeloma for over 5 years now and have had 2 stem cell transplants. This is NOT a death sentence. I have been on Dex, Revlimid and Thalidmide off and on over the years and let me tell you that the treatment is not that bad. I decided from day one that I was going to be involved with my treatment and learn all I could about the disease as there are so many treatment decisions to be made during the course of the disease. When I started treatment I felt very much like you have described Carls feelings. My last transplant was last January and was back to work and playing 18 holes of golf twice a week within 30 days. I didnt always feel like it and sometimes I had to kick myself in the morning to get going. I also have a great support system around me and they wouldnt let me get down during those times. I simply viewed it as one of lifes challenges and I was going to win. I really feel that having this disease has been a life changing experience. I am a much better person having had this experience. It has allowed me to put life in proper perspective. Good luck!

I am the caregiver for my wife, she was diagnosed with MM in Sept '06. She has all the problems associated with MM, Anemia, Kidney failure, Pneumonia, Urinary tract infections, bone pain, weight loss, she also has contracted Amyloidosis from the cancer cells produced by MM. She just had a total knee replacement that we belive was partly because of the MM.She has been on sererval differnt treatments, last July '07 she had a stem cell transplant and was in remission for 2 months and the cancer came back. She is now taking Velcade and Dex, doing good with it. She was just recently asked how she kept going with all that had happened to her. She answered by saying she lived each day one at a time and her problems were in the Lord's hands. She wants to live but if it is her time she knows he will take her.Hope this helps some, knowing others are out there going through the same thimg. I would suggest a support group for MM, they help tremdously. God Bless

My 36 year old brother was diagnosed with multiple myeloma last fall. We have met two people who have lived long term with it, one 17 years and one 20 years. Although neither is working, both can enjoy life and are not bedridden. My brother went thru a Stem Cell Transplant in April and is currently doing very well and getting ready to return to work. We should hear in the next couple of weeks if he is in remission. I have a Google alert on multiple myeloma and it is very uplifting to get all the medical breakthroughs that are coming!

May God bless all of you!!


ATTN: Cancer Patients, Cancer Survivors, and their Families

Mr. Carl & Myeloma — Posted by cndgsnr @ July 06, 2008 17:00
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ATTN: Cancer Patients, Cancer Survivors, and their Families:  God has placed it upon my heart to call upon you to come to my aid. My father-in-law was recently diagnosed with Multiple Myeloma. Please read my post titled Oncologist on 7/2/08. I am searching for words to share with him that might help encourage him. I think that if those words came from someone who is fighting or has fought a battle like his that he might be even more encouraged.

If you are not the patient, but perhaps the family member or caregiver of one who has battled cancer, feel free to share your wisdom with us. We seek your wisdom to assist us as we help encourage and support he and my mother-in-law through this journey.

If you have not journeyed a path similar to ours but know someone who has, please direct them to this post.

If God prompts you to come to our aid, please do so via the comments feature of my blog. I would like to print those that I receive for Carl to read.

God never fails me. Through His promptings, I have always been blessed. I look forward to the results that He has in store through this one.


Oncologist on 7/2/08

Mr. Carl & Myeloma — Posted by cndgsnr @ July 06, 2008 07:16
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Concerns that we had going into the visit were:

Carl’s lack of appetite

He has little to no interest in that which he once did.

He does little to nothing - mostly sit in his chair, watch TV, eat very little and sleep.

Over active bowels with diarrhea.

Notes taken during visit with Dr. Brierre:

Carl’s weight = 166 today. On 6/17 it was 171.

The lump on his neck responded well to the steroid = good sign.

Dr. B. asked if the steroids did ok and Carl responded with a yes.

The recent MRI detected cancer in the bone at the neck.

Radiation will have to be done.

Carl was instructed to begin the REVLIMID.

He was also instructed to take a baby aspirin 3x per week.

Carl was given an injection to boost the red blood cell production.

Dr. B. wants to see him weekly.

Carl will see a doctor concerning the radiation in the coming week.

Dr. B. advised Carl to find a hobby. He said that there will be plenty of time on his hands.

Dr. B. assured him, and all of us, that his goal is to keep Carl alive.

Dr. B. suggested that Carl find a way to enjoy life because he plans on giving him more years to do so.

Dr. B. again recommended no impact exercises, but that to “get moving” would be a positive in his battle against Myeloma.

Dr. B. prescribed medication to assist with the lack of appetite.

Dr. B. said that if Carl needs help with his “spirit” that he could do that as well, but to give him a little more time with his own determination.

We have visited with Carl and Hilda on several occasions since that visit with Dr. Brierre.

Carl’s appetite has not improved. He says that nothing has taste.

His spirits appear to be lower.

His bowel movements have not improved much.

His activities have not increased.

He is becoming more pale and more weak with each day.

If we could plug into Carl with our desire for him to live, he would be fighting with all his might. Maybe he is, in his own way. I think on the footprints prayer. We are all being carried through this time.

Dear Lord, let our words, deeds, and thoughts be those of yours which will help Carl to follow the path of YOUR will.


Question for Fellow Bloggers

In His Steps — Posted by cndgsnr @ June 30, 2008 19:52
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What method do you use when you:

  • Are inspired by the writings of another blogger on this site
  • Mention that inspiration in your own blog
  • Notify the blogger(s) who inspired you of your blog message but NOT through the comments on their blog

I sure hope that makes sense to someone.Undecided

What is trackbacks?  Is this what I should use to do the above?  I have read up a little on it, but it seems to be flying way over my head at the moment.

So many of you mention things in your own messages that lift and inspire me.  Thank you and may God bless you for being a vessel of blessings to me.


Update on Carl

Mr. Carl & Myeloma — Posted by cndgsnr @ June 30, 2008 08:37
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In the days following the visit to the oncologist through Sunday, June 29, the following has taken place.

He visited with the Urologist; check up = good. Return in 6mos if no other complications arise.

The insurance has approved the REVLIMID. They will have to pay the applicable co-pay fees. Thank you JESUS!

A 5-6 cm lump developed on his neck.

On 6/25, he visited again with the oncologist which resulted in the following:

The lump on the neck is related to the myeloma. Steroids were prescribed to help reduce it. Regular blood checks were recommended because steroids can elevate the blood sugar. In the return visit in one week, if the lump is still present, a biopsy will be done.

Prior X-rays looked good except for one area in the neck. An MRI was scheduled to check the entire spine.

Because of the kidneys not functioning as they should, the Zometa cannot be prescribed. Zometa was hoping to be given to help maintain bone strength.

The myeloma was described as “fairly advanced” when the oncologist was asked about the stages. Along with these words, the oncologist again assured us that this can be turned around and put into remission.

It has been advised that people who are ill not mix with Carl. We should be very careful not to share contagious illnesses with him due to the reduced immune system with the chemo and the myeloma.

Carl received a call from his work supervisor. Appropriate steps are being taken in that regard, though I am not certain of the details.

We visited with my in-laws yesterday. The lump on Carl’s neck has reduced dramatically in size. Thank you, JESUS.

I beg your continued prayer for all of us. The storm is tossing us about quite a bit. Knowing that we are being supported through prayer helps us to keep in mind that Jesus calms the storm.

 


To the Oncologist

Mr. Carl & Myeloma — Posted by cndgsnr @ June 18, 2008 10:19
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Our trip began early. Due to special instructions given by Dr. Brierre’s office, Scott and I had a few errands to run prior to joining my in-laws for the appointment. One of those instructions was to avoid using strongly scented deodorants, colognes, or perfumes. Being a teen boy, he refused to wear my “for women”, but lightly scented, deodorant. We also needed cash from the ATM. With a few minutes to spare, we headed to church to spend that time in prayer. I lit a candle while doing so. Quiet, alone time in church is so peaceful!

Then, it was off to the oncologist’s office. Parking for his patients is in a tower. Level one - full. Level two - full. Around and around we go hunting carefully for a parking spot. Finally, at the top level - on the roof - we find one.

As we exited the vehicle, we called Angela’s cell phone (PRAISE GOD for those little gadgets!). She tells us that they were able to find a spot to park at level three. We head down in he elevator to meet them. During our restroom break, Scott realized he had forgotten the car’s headlights on. He hurried back up to turn them off. As he did this, we were allowed a few moments to breathe. When he returned, we entered the elevator and headed to level two which is where the office is located.

Upon entering, the usual procedures of paper work and such were done and soon after completing that, Carl’s name was called. We could not help but laugh at the length of the line as we - myself, Scott, Angela, and Hilda followed close behind him. During a VERY brief wait in the patient room, we made a quick calculation of Carl’s current weight and amount lost. Prior to all of this, his weight was somewhere near 198 pounds. On this day, the scale read 171 pounds - fully clothed, pockets filled, and shoes on.

The physician’s assistant entered - last name Buller. He explained that Dr. Brierre would be in shortly, but that he would “start the ball rolling”.

While with Mr./Dr. Buller, I noted the following:

The reason that Dr. Vincent ordered a colonoscopy was due to his blood work showing some anemia. That anemia may well have been caused by the Myeloma.

This type of cancer effects the bones and marrow.

The mental confusion which was present upon bringing Carl to the hospital, was most likely caused by the elevated levels of calcium.

He complimented the care that Carl received. He said the doctors in charge did a good job with the testing that had already been done.

More minor blood tests would be ordered.

X-rays of the bones would be ordered.

He said that the treatment options available today for Myeloma are far better than they were ten years ago. Within the last five years, those options have been improved.

With those better options of treatment, patients are living longer and better lives.

The outlook for Carl is far better today than it would have been ten years ago.

Lots of help is available today for patients with Myeloma.

Chemotherapy - of some sort - will be prescribed. The type will depend on the blood tests and x-ray results.

This disease is NOT hereditary.

This disease is close to that of lymphoma.

Carl’s medical history was noted.

Steroids are often used in treating cancers. Cautions will be taken if prescribed to Carl due to his diabetes.

At that point, Dr. Brierre entered. I noted the following:

He questioned about Carl’s career and work places.

He questioned about insurance and prescription policies.

He said that this will be treated with chemo to treat the blood.

New drugs are available - He mentioned REVLIMID.

It is promising.

It is taken orally.

Cost is approximately $7000/month.

He expressed that he felt the ideal chemo for Carl would be those taken orally.

Those do, still, have some possible side effects including nerve damage, blood clots, lower blood counts, need for blood transfusions

They offer the patient the opportunity to continue to live a more normal life.

He ordered more, specific, blood tests (drawn in office) and metastatic skeletal survey - June 18 in Crowley. These are being done to help him characterize and stage the Myeloma.

He wants to see Carl and review those results. That appt. is for Wed, June 25th .

The chemo by mouth is dispensed differently than medications prescribed; pharmacies do not dispense them, they are sent directly to the patient. Lots of paperwork is involved with this. They will begin that paperwork. It may take approx. two weeks before he begins that treatment.

He ordered an IV drip (Zometa was mentioned) to be done monthly - beginning June 25. This drip will be that of medications normally prescribed to patients with Osteoporosis. This will help to keep the bones stronger and healthier. This will be administered in the Crowley location and takes approximately one-half hour.

Diet - It was advised that Carl maintain the current diet prescribed for the kidney and blood pressure, but to that, he added, “If you want to eat; EAT. If you want to drink a beer, drink one.”

Exercise - Walking was recommended. Activities of heavy impact were discouraged.

The blood was drawn.

The appointment ended.

They went their way and we went ours. Scott is enrolled in Summer CCD - a must for his upcoming confirmation. We left Lafayette at 12:30PM. His class begins at 1PM. God must have been holding the clock in His hands. Timing was perfect.

Parts of the journey ahead remain unknown. The words used are scary. The encouraging information given by the doctors are comforting. I do not know how to “feel” regarding all of this information. I am wise. I am strong in faith. Still, it makes me want to say, “NO! I don’t want it! ITs not fair! This can’t be! Someone made a mistake!” These are my thoughts. I think of Carl. I wonder what his thoughts are. He rarely expresses them. If asked, his answers are brief. Hilda said his sleep was not sound last night.

Our hands are folded in prayer. Our minds digest the information. Our hearts regurgitate that information in the form of tears. Silent tears - in our alone time. Remain positive! Keep looking up - for THAT is where God is, with arms reaching down, watching carefully over all of us.

The journey may not be an easy one; The journey is one in which we will not travel alone………preaching to myself here…………

Today is Mike’s birthday. He is 45. He was quiet this morning.

Keep those prayers going. They ARE helping!

 


To the Urologist

Mr. Carl & Myeloma — Posted by cndgsnr @ June 16, 2008 10:35
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Carl went to the urologist this morning. Catheter was removed. Barring no more problems, return in one week for a checkup.

IF there are any bladder or urinary complications, get to hospital for a catheter to be reinserted.

From the urologist, they went to lab for prescribed routine blood work; that routine is 2-3x per week.

The sugar levels have begun to be challenging. The doctor noticed some elevated levels. He is now having to check that 3x per day and take prescribed medications.

Tomorrow: Morning appt. with Dr. Brierre (oncologist).

We had a great Father's Day.  He and Hilda prepared the coon-ass microwave with a turkey and a pork loin.  Mike, myself, and Scott attended our normal Sunday Mass.  After that, we headed to their house.  Mike finished up the cooking.  It was a quiet day with just us and them.  Other family members trickled in during the afternoon.  It was a lovely day and one that Carl and Hilda seemed to be enjoying.

Your prayers are appreciated.  The journey is just beginning.


Results are In

Mr. Carl & Myeloma — Posted by cndgsnr @ June 13, 2008 07:06
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On Thursday, June 12, 2008, Mike took the day off of work to be with his parents as the doctor shared with them the results of tests taken during his 10 day hospital stay. I joined them. I brought along my notebook. These are the notes I took as the results were given and discussed.

Multiple Myeloma

Bone Marrow Disorder

Not as bad as leukemia

Treatable

Controllable

Chemotherapy is used in treatment to treat the cells. With treatment, the short circuit in the cell production can be corrected. Success in treatment will depend upon his body’s response to the medications.

This has been detected very early. Approximately three weeks ago, pre-op blood work showed no signs of this.

Next steps:

Monday, see urologist to remove catheter and discuss maintaining healthy bladder/urine flow to prevent backing up into kidneys.

Next week, see Dr. Brierre; oncologist.

Maintain strength and health with vitamins, proper diet, and exercise such as walking.

Continue Flagyl for diarrhea caused by a “bug”. After meds are finished, collect stool for culture.

The results are not as grim as expected. With positive response to meds and treatments, there is a 75% chance that he can live much longer. Because this has been detected so very early on, chances of treating and controlling this are on his side.

Your continued support through prayer would be greatly appreciated. The journey ahead is filled with scary terms and uncertainties.


For Nellie Knowledge

In His Steps — Posted by cndgsnr @ June 11, 2008 05:48
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Hello, Nellie.  I chose, randomly, to read your blog today.  I wanted to leave a comment, but it seems that that feature is not enabled.

What I wanted to say was - DITTO here!  My husband and I have often spoke of the same topic with broken hearts filled with prayer.  It even seems that the weather reports are more scarier than they were in the past - so much more WARNINGS than in the past.  Is it just me? 

We see our son growing up in times much different than that which we grew up in.  We see so much that has been compromised in the area of basic morals and respect for self and others.  Concern for him is greater than concern for us.

Again - DITTO here!

I have not read all of the posts within your blog, but I plan to return to do just that.  Keep tapping at those keys on your keyboard.  I look forward to reading those posts already published as well as those to come those to come.

Blessings to ya!


Update on my Father in Law

Mr. Carl & Myeloma — Posted by cndgsnr @ June 10, 2008 08:25
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Today is day 10 in the hospital.  Many, many tests have been done.  All of them normal, or nearly normal.  Bone marrow was taken yesterday to test for Multiple Myeloma.  The family physician feels rather strongly that this is what the final diagnosis will be, but the results of the marrow tests are not yet in.  His kidneys are not functioning at 100%; somewhere near 20% function is what they say.  There is a possibility that he could be discharged today.  This morning he is being prepped for an "all over body scan".  That is the way that my mother-in-law explained it. 

The journey ahead is filled with uncertainty.  The final test results will determine that.  They are expected within the next couple of days.

My eyes and ears know its real.  As I read the words I type, it makes no sense.  My soul says wait until the final period is written in that diagnosis.  So many things have happened in the past two months.  Some of which indicate that the enlarged prostate causing urine obstruction for many, many years may well be the cause of the poor kidney function.  Elevated calcium levels caused the concern and mention of myeloma. 

Praying.

Waiting.

Hoping.

Praying.

 


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