Playing Catch-Up!

 I have not posted in almost a year. It went by really fast!! I want to do a little update for those of you who may not see much of us and wonder how Ronnie is doing. He had rather me tell you because he generally does not like talking about his illness.If asked, he will tell most people he is doing well. Most days he has little energy and if he does not have a few good days in a week, he tends to get a bit  depressed. It is very difficult to make plans to go places now because when the time comes he may not be up to going. We started to Texas a few months back. We made it to Mississippi and had to turn around and come back home. Gout jumped on his foot and he was in some pain. That is okay, we enjoyed the ride out even if the ride back was not a lot of fun!

  His blood work has been really good since his recovery from the stem cell transplant for the Multiple Myeloma. Due to the fact we lost the Cobra coverage last October, he has not had many of the tests needed because they are super expensive. The monthly labs he had to have costs between 500 - 800 a month! We will be making payments to the lab for quite a while. Thankfully the drug companies provided his chemo drugs and his monthly infusion. If they had not been kind enough to do that, I don't know how we would have made it! Those drugs costs like 8k a month! God has provided for us when we could not see a way! We have not had to have any fund raisers. Also thankfully the Lymphoma Leukemia Society will help us pay the premiums on the insurance that begins this month. You must have coverage before they can help you so this will be a huge blessing.

  He has to have quite a few tests that will be happening soon. Please pray that the results of the bone marrow, skeletal study and the 24 hour urine will come back good.

    I thank all of you for your thoughts and prayers! God is good , all the time!

 

Beginning the Process!!

    It is a rainy night in Georgia as I write this! I am so thankful for the rain!! We are in Augusta tonight in a motel.  We got here today just a few minutes before his appointment. Somehow we left a bit late so we did not have time for lunch. We had planned  to eat at that great Mennonite restaurant in Wrens but did not have time! I have never been to a clinic or office that has a snack bar but his new  facility does! We shared a snack of grapes, cheese and crackers, my fav!!

The doctor  went over the results of his bone marrow and other tests today. The GREAT news is that he only has like 5% cancer cells compared to 85 to 90 % when he was newly diagnosed!! I burst into tears at hearing this news! I shocked  myself because I did not even see it coming!!  He said this early remission is a very good sign that he will do well after the transplant!! However he also cautioned us that the diabetes, pace maker/defib and hypertension puts him in the elevated risk group during recovery but does not disqualify him from having the stem cell. So we are on the fast track to getting this thing completed !

    We go back tomorrow to see the doctor who will place the port, then later he has pre-op at the hospital.Then home for the weekend! We will leave again on Monday (Memorial day )afternoon and early Tuesday he will have the line or port placed for the stem cell collection. They will show me how to flush the line and we go back the following Friday to get it checked. At that visit they will also show me how to give his neupogen injections but he takes insulin so that should not be a big deal. These shots will be to stimulate the stem cells.  The doctor told us a possible side effect was bone pain...Oh NO, he already has so much bone pain most days!

  Ronnie  had some questions for the doctor today. He ask about the 5 pound weight limit and if the bone pain would go away afterward. The doctor told him that he did not want him to anticipate he would be like he was before cancer. He told him he may get back to 65% . He may never be lifting a lot over the 5 and the bone pain might always be present to some degree. The cancer has damaged his bones and at his age it is difficult to rebuild bone.Not impossible just difficult! Ronnie's retina doctor also told him some years ago that all he could do was damage control , his vision would not improve and most likely his truck driving days were over. God proved him wrong! The doctor was amazed at the next check -up. God can do it again!!

   
  

   He will get two shots a day and then on the following Monday, if his counts are high enough they will do the collection. It will be a six hour process! They explained that with most people ,it is a two day process. Once they get enough stem cells all that is left is to be admitted!! He will go in the middle of June and have the chemo one day, have a one day rest, and then receive the stem cells the next.There was really not a lot new that we had not been told, but actually experiencing it may be a bit different. I DO fully expect Ronnie to do very well though!! He has not yet had a surgery or whatever that he did not exceed all expectations for him! I give our God all the credit for that and for our journey thus far!

     The one thing we did not know, was that after his release from the hospital he can not go around crowds for two months!! No church, malls, movies etc... He was not too happy on hearing this news! He then asked the nurse if he can eat out! She told him she was sorry to tell him no! In other words he can not breathe the same circulated air that would be in a crowd of people.No hand shaking, close contact etc. Food warmers in restaurants may not be at the right temperature not to mention cleanliness and prep.  Guess I will be cooking more!! He can not have fresh fruits or uncooked produce during this time either. Education, education... I kept up with Leah Brinson's treatment and though his cancer is not the same, I  remembered some of these things also applied to her...funny how we sometimes don't get stuff until we are in the same shoes!! The good news is that he can have visitors at home, just not the kissing and hugging and sick variety!! I don't really anticipate a crowd!!  If he can see all the grand kids,that will get him through!

      Hope you all have a happy and  safe Memorial day! I will keep you posted on what is happening. Thank you as always for your thoughts and prayers for us! We are so blessed with wonderful family, friends and most of all a great big God!!!

Moving On with the STEM CELL transplant!!

Hey Friends and family   ( sounds like a wireless phone ad!!)

 

   We got THE call this morning, the insurance has approved his stem cell transplant and apparently he passed the physical test so we are relived about that too!  We go next Thursday on May 26 at 1 pm to go over test results, sign yet more paperwork and they will give us the "calendar of events" for the stem cell. The RN has to confirm with the hospital BUT she will  get him back one of these days, Tues, Wed or Thurs. after Memorial day (the next week) to do the outpatient surgery to put his line in for the harvest  for getting the baby stem cells out) . Then we will have to be back that same Friday so they can give him his injections to take home to stimulate the stem cell growth. They will give him one in the office and we will do the other two at home.  Then the following Monday  , he will go back and they will begin the first harvest of stem cells. We will also have to go back a second day so we will probably stay over nights  until he gets those completed..(out patient). They will admit him when they get enough of the stem cells harvested and I don't think they exactly know how many times it will take?? It varies by patient I believe is what they told us. So at any rate, we are about to jump off in to this deep water so please continue to keep us in your prayers!! He will be in patient for at least 3 weeks once he is admitted. He does not like to be confined to the house much less by hospital walls!! All of this for a man who has always had  "white line" fever!!! He always enjoyed his work so this is very difficult for him in many ways!!

 

  We still have other doctors appointments here  to keep so we stay on the run it seems! Never a dull moment around here!

 

 I am so thankful Ronnie's pain has been better since last Saturday!! I could not see him going into this in the bone pain he was continuing to have !  He is outside enjoying this beautiful day right now!!   Thanks again for all of your thoughts and prayers. We love all of you!!    Gail and Ronnie 

 

   God is Good ALL the Time!!!

 Hello everyone!

  I am feeling bad tonight about the loss of lives yesterday when the tornadoes came through the southeast! It just goes to show, we never know when our time here on this earth will be up! It is a reminder of how precious life is! I wondered about the 10 year old girl who adoptive parents were killed. God has a purpose in all things but on this side it is hard to understand. I know it is way above our ability to do so! May God comfort those who lost their loved ones and their homes.

    We are embarking on a new phase in this journey. Medical science is amazing ! God has given doctors the ability to do many things that were not available in years past. We went to Augusta this past Monday. Our sweet friends, Judy and Eddie Brown went and Eddie drove for us. What a blessing they are! We met with the doctor at the MCG Cancer Center. He and his nurse were very kind and explained the stem cell transplant procedure. This was an education to me, I had heard of them but never had a clue as to what the process was! They answered all our questions and never seemed in a hurry! The doctor explained that since Ronnie was in "good remission" , he wants to move ahead as quickly as possible with the transplant! He also told us that many years ago, patients only lived 3 to 6 months because there were no known treatments! How thankful we are to live in this time that lives can be extended! With the trials going on, maybe there will be a cure soon!

   We will be going back to Augusta next Thursday. They will draw a lot of blood vials, do all the necessary tests, ekg, lung function etc. They do many tests because you must be healthy enough to withstand the rigor of the mega dose of chemo as well as be able to hold up to having your immune system temporarily destroyed. Please say a prayer Ronnie will pass! God has brought him this far so I have no worry that he will pass! This will be an all day thing with another bone marrow test being done last. Ronnie was glad to hear , he will be given a bit of anesteshia this time unlike the one he had in the office before! When he is deemed healthy enough for the transplant they will bring us back in a few days for the next part!

    When we go back they will put a port in his shoulder area for the stem cells to be harvested. He will then go home and come back on the fourth day after taking an injection each day to boost his production of the stem cells. Once the stem cells have increased in number they will begin the harvest! This will take place over two days. We will get a motel and he will go back the second day for the next harvest. I did not think to ask if they can get enough during these two days??  After they have harvested an adequate amount of stem cells and if all goes as planned , he will be admitted to the hospital. I asked a lot of questions but apparently not enough because I still have some questions! It seems it will take several more weeks  to get to the hospitalization. We will be doing a lot of traveling and staying in Augusta for a couple of nights each week between now and then.

   The unit he will be in  has only six beds. They stressed he will get the best care. The RN stated that when he calls for a nurse , one will be there right away! No waiting for these patients!  One nurse will not have ten patients to take care of. I think they only have a couple of these patients each and for very good reason I am sure!

Once he is admitted, he  will get a huge dose of chemo and then sometime later  the new stem cells will be returned to his body. His immune system will be nil and that is what they want. The new stem cells will have new ground to grow in, I suppose! One person can stay with him but visitors will be limited to one and then only 15 minutes.He ask if children can visit but that was a negative! That will be hard to not see the babies ! The good thing is most of our grandchildren are not children anymore! He  can have no physical contact but visitors can come stand by his bed to talk with him.He can not have any fresh fruit or flowers..but can have outside food if it is cooked fresh..hmm , that might be hard to get!! They told us what to expect as far as hair loss, nausea , weakness etc. The doctor did say patients who do the best are the ones who are determined to get better! Ronnie has a lot of health issues and is one determined and  hard headed individual...so I expect him to ace this thing completely!! Ok, family can I hear an amen???

Ronnie loved the fact the doctor said most patients don't stay in the hospital now but three weeks! That is better than the 4 to 6 his oncologist here had him prepared for! After 10 days at Fairview, he said he was not too sure he could stay that long!! He is actually ready for this next step. The doctor told him it would help the unmerciful pain he has been experiencing. The doctor here increased his pain med dose today. He is taking a higher does than ever. He was not happy about that but then what do you do when the pain become greater than everything else going on in your life? 

  We thank all of you for your prayers, thoughts, and calls. We rest in knowing that you all will be praying for us in the upcoming days and weeks! Thank you for your patience in my rambling explanation! We love all of you and can never thank you enough for your prayers on our behalf!! In HIS love and care, we rest!!! 

   
  

 I have not posted in a while. We have been busy with life. Yes, there is life after a cancer diagnosis! It is spring, the dogwoods and azaleas are in full bloom. New life springs forth and so also with our family! We welcomed a new generation to our family this past Monday with the birth of our great grandson Conner. God blessed our tiny little grand daughter and her hubby with a nine pound baby! She herself is a miracle! A few years ago she and her hubby (then finance) were in a wreck. She broke 5 vertebrae in her back,lost a lot of blood and  later had to have a spinal fusion. The doctors told us that it was a miracle she was living and especially so that she was not paralyzed. We know who brought that miracle about! She had so many prayers going up for her. We worried when she became pregnant. We worried about her tiny petite size and the spinal fusion she would need a C section..we need not have! God brought her and the baby through just fine. Her epidural did not take due to the fusion but she handled it the way she handled the pain from the wreck...like a trooper! She is one amazing little girl..no, she is a full fledged woman now!!!

   There has not been a lot of things to change lately with Ronnie. We are in the routine of chemo , ordering the Revlamid ,taking the 10 steroid pills every Monday,getting the Zometa treatments every three weeks and counting out pills like we own a pharmacy! I say we, but I count them out and he takes them.I do his meds two weeks at a time! He has been able to cut back some on the mgs. of morphine.He seldom has to take pain med for the break through pain. He had to do another 24 hour urine test last week. We don't have the results back but pray that the test results will show he is beating back the cancer!

  He can feel really well for a couple of hours and then be completely exhausted for the next six. In a normal day he has to rest a lot. He has not missed but one Sunday worship service and he was at the hospital that Sunday! Sunday mornings are about all he has the energy to do and he sometimes is groggy from the pain meds but he loves being there. I have learned I can no longer commit to any event! He may feel great one hour and like mud the next! It is a trademark of this illness. Had he not been diabetic, perhaps we could have caught it much sooner!We assumed the tiredness was from his diabetes.Don't put off visiting your doctor. He was making regular visits to the diabetic center but neglected to see his regular physician!

  His immune system is compromised so he is at risk for any virus that is around. To date he has been blessed in that aspect! No flu , cold or virus since his diagnosis! His  blood work has been remarkably well ! The numbers still show him to be sick but they have not been low enough that he has had to skip treatment or take blood. What a blessing this is! His doctor tells us that his numbers are consistent with him feeling better. He thinks it shows his body is beating the cancer down! Pray that he will be meet the physical qualifications for the bone marrow transplant. We could be going very soon to Augusta for the consultation. It will be a 4 to 6 week hospital stay and tough in a lot of ways but with your prayers and God's help we will get through it with flying colors!

   Until Ronnie's diagnosis I did not know much about this MM as we call it. (Multiple Myeloma)  Now I know this disease recently took the life of a fine Christian educator in our city, a lady who was the first woman to run as VP of our country and then today, saw an author on tv who shared he has it! I also learned a lady I know from years ago was diagnosed just today with it! My heart hurts for her and her family. I went back tonight and re-read some of my first blogs and cried just reliving the pain of those early weeks. The unknown , the fear and most of all coming to grips with the fact I could lose my life mate from complications of this disease! God equipped us with the ability to live our lives with out worrying we will die any minute. The fact is we are ALL going to die! This is just a reminder of the fact none of us are going to be here forever. Given the way things in this world are, I don't want to..but we all want to be with our families here as long as we can. It is just a reminder of what a precious gift God gave us with life and family to share it with! God is good , ALL the time!

  

Good Days, Grands , and the Road Ahead!

  We have had a wonderful week! Ronnie has been off chemo for the past 10 days and the Revlimid for a week. We have been outside on a few of these beautiful spring like days! Ronnie has felt better this week than he has in a long while!  We managed  (with the help of our grandson Lane)  to get up a lot of leaves since Saturday. I am talking layers of leaves that have been on the ground since the fall. Maybe now the grass will show when it begins to green up!

    Ronnie went back for chemo and saw the doctor this morning. Dr. Aggarwal said he is doing well. The simple fact he is feeling better means the cancer must be retreating! He will do another 24 hr urine test after this round of chemo is completed. This test will show the progress of his treatment. He will then have just one more cycle of chemo before sending him to Augusta for a consultation for the stem cell transplant! That is if the urine test comes back and shows him in remission!! We ask for your continued prayers that will happen!

  The doctor again reminded him the bone marrow transplant (stem cell)  will not be a cure but can prolong his life. He said the average time for M.M. patients used to be around three years but now it is more common to see people live eight years! His over all health will have to meet certain criteria because the treatment is very harsh on the body!

Ronnie has always struggled with his blood sugar. He has a problem now with it bottoming out. When this happens he wants to eat everything in sight. The first of every week it is really high because of the steroids he takes on Monday. He goes from highs to lows!  I think we need to go to nutrition classes to learn how to better handle this. When I mentioned it to the PA there, she scoffed off the idea since he has been a diabetic for so many years..but if you can not maintain near normal levels , then I don't see how it could hurt! Many things have changed since the eighties when he went through those classes! We are hoping they can reduce his insulin also. The AC1 will tell the story !

    He sees the doctor next week at the diabetes clinic so I hope she will take his cancer treatment into consideration with his diabetes treatment.  I want him to be as healthy as possible especially with the bone marrow transplant drawing close!  Diet and gentle exercise!  The doctor told him walking is good but not to lift anything heavier than 5 lbs and cautioned him his bones are weak and can be broken easily. Walking will strengthen them of course but having the energy with the chemo and other drugs will make it tough! He is off his cane now, I am happy to report. He still has a limp that comes from a compression fracture in his back.

   He is tired today, back in the recliner/chemo cycle ! He gets the bone treatment Monday if his kidney function test he had today comes back ok. He has a right to be tired for another reason.  We will probably be GREAT-grandparents with in a month! Our oldest grand daughter Ashley is due the first of April but according to what the doctor told her today, it may not be that long! We have are looking forward to this new segment of our life! Back in the fall there was so much uncertainty when we were told he had cancer, he was really afraid he might not make it to see this little one! We have a grand baby learning to walk and a great-one almost here! Thank you Lord!

   We passed the sign on a church on 257 coming home today. It said, "every day is a gift , so open it with prayer".. that is so true and such good advice! I know many of you saw  the cross, our little grandson Ty made for me!  He went in and got his papa to hammer one "big" nail in and he did the rest! Ronnie said he had no idea what he was doing!  I was on the phone going through the long ritual of ordering his medicine. I had to tell Ty I would come out when I finished to see what he had made for me. How sweet and special are such times! I know as parents we often did not take the time to appreciate the things our own kids "made" for us! That is what is great about being grandparents!!  Having this illness sure has changed his perspective on life as well as my own! It is always easier to see the bad instead of the good in all things... now we try to see the good and we know God will take care of the rest!!

A Great Day!

   Ronnie is on his chemo break until next Thursday!! We went Monday and he does not go back until Thursday of next week! His plaetlets and other blood work was still good , praise God! We had lunch yesterday  with our Monday night crowd. It was so much fun to laugh and carry on like we always do!! What some crazy fun people to be with! We kidded him because he got in this conversation with a couple he met in KFC ! No, he didn't know them but now he does!! He learned they had recently moved here . He surmised maybe they were missing friends they left back in Florida. Maybe they can join us next time!!

   We also had a new door installed this week in our master bath to make it easier for him to make those frequent nightly trips! When you take two water pills a day they become that way!! A friend of ours installed a door at the other end of our bathroom meaning all he has to do it walk a few steps to get there! Also should he ever have to use the walker again , it will go through this door! It looks now as if it has always been there! He did a great job and didn't charge nearly what he should have to do it!

  He is very tired tonight but we had a long but enjoyable day! We had some banking business to take care of in Milledgville . It was good to see some people we have met up that way that we now consider friends! God has worked so many things out in our life, it is unreal!

  We went to Macon after that to visit a friend who has had a lengthy hospital stay. We eat at Logans and brought one plate home! Love it when you can make two meals from one! We checked out some lap tops at Best Buy. With the long hospital stay looming , we have to have access to our banking accounts etc. Kelly swears all I want to do is be able to keep up with Facebook. True but I am lost without my computer when it comes to everything!

  We had a pretty busy day and he was fading fast well before we got through. We had talked about a mini beach trip and visiting our niece down that way but after today, he decided we needed to postpone it until his next chemo break! When he feels better for a while, it is easy to forget he is sick! It just felt so good today to not think about the "monster" ! When we get him in remission and past the transplant, I pray we will have many more times like today!

   We so appreciate everyone's prayers and thoughts! Just as the days are warming up and the sun is shining through, it seems so in our life! The clouds are parting and the sun is coming through! We can feel the warmth of love from family , friends and most of all from a God that loves us!!