These past three months have been tough to say the least! I am not Okay but trust I am in God's hands and I guess that is better than Okay isn't it?
Aunt Norma Stanford, her daughter, my dear cousin Janet, Aunt Joanie Coover, and last of all, Brother Regher passed from this life to the next. The hardest of these losses was Janet. She was taken so young and so quickly - just days following her mother's death. Janet's cancer was detected the week of Aunt Norma's funeral. The other dear souls had lived long and well. It seemed a tender thing for them to move from this life to the next. Somehow with Janet it is different. There was no time to prepare or get that last hug. Still I know that we are in the hands of a loving God. I pray for her children. I trust.
Adding to the difficulty of these months has been my own physical struggle. We finally have
some answers . . .
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It all began with the opportunity to drive to Arizona for a 12th birthday celebration for our grandson Noah and his ordination to the Aaronic Priesthood. It is great to live in a day and time of travel possibilities that allow such precious sharing of the most important times in our family - even if it is in Arizona in July! Whew!!
Noah was his normal Noah-self and an absolute delight to be with. The time with his five brothers and sisters, his mom and dad and the Anderson crew was simply wonderful! The picture was taken on our way to a grandparents, mom and dad and Noah tasty fish dinner at Kings Seafood Restaurant. Don't you love the hair-in-the air look? Do you think it is a genetic youthful predisposition Carey?
At any rate on the morning of July 16th after a peaceful night's rest, I awoke with swelling in my legs and feet. Things began to progress throughout the day with an evening visit to an Urgent Care facility, followed by an emergency room visit and numerous lab tests that comprised most of the night. Nothing particular was found except for a possible high read on proteins in the urine. It was nothing significant though and the doctor thought it was probably nothing. He sent me home with diuretics and the council to follow up with my family doctor in Idaho Falls.
We headed back for Idaho taking the route through western Arizona so we could stop and see my brother David who lives in Lake Havasu. We arrived in Lake Havasu in time to share lunch and some laughter with David, Sharon and Sharon's mother before we continued on our way home. After an uncomfortable night in Cedar City, we hit the road hoping to arrive in time to see our family doctor for a 4:00 p.m. visit. We just made it. Dr. Bennett assured me that he thought I had just had a bit too much salt. He told me to cut back on salt intake and continue with diuretics. I really did not think salt was the problem but I guess that for some people it is and this was the logical starting point.
A week later, things had progressed and I was definitely not getting better. It is important to note that other than the fatigue which I have been battling for a couple of years, consistent weight gain, and the swelling of my legs and feet, I felt just fine. Actually the exhaustion factor was increasing and I found myself often berating myself for being lazy and unable to get much accomplished. Those of you who know me know that I am a goer and a doer. I have always had high energy and a love for having things in order. I love to be with people and in general just living life fully and richly. I felt I was slowly being swallowed up in weakness.
I called the doctor's office to find he was gone for the week. I made an appointment to see his associate. (As a side note, Claigh and I have consistently prayed for divine guidance for ourselves as well as the doctors who were treating me. This prayer has been repeatedly answered.) At the end of my appointment, I mentioned the low level of protein in my urine that had been noted in my hospital visit in Arizona. The doctor almost as an afterthought determined it might be wise to do a 24 hour urine collection to see if there was anything there. This was the beginning of an at times overwhelming process. It was found that my kidneys were not processing proteins normally and indeed the levels of protein in my urine were over 8000. That is very bad!
My family doctor returned, made an emergency appointment for me at the kidney institute. That first visit was a bit unreal. The possibilities seemed far beyond what I could believe. I asked why I wasn't feeling sick. The doctor told me that kidney disease is called the silent killer for a reason. It kind of sneaks up on you. He also said I was very fortunate because most people do not catch these problems so early on in the process. Following more extensive blood work that gave no clear indication of what the problem was, I was scheduled for a kidney biopsy.
My biopsy was done October 1st, the tissue sent to a lab in Arkansas, and the report to the doctor by the 5th. What an amazing time we live in! Dr. Haderlie called to start me on another medication and give me the direction for more blood work to be done a week later, just prior to my next appointment with him. In the meantime, I had begun to deteriorate even more with bouts of extreme muscle weakness and overwhelming fatigue. I was losing hair by the handfuls.
My decreasing health made me more and more unreliable. A week ago, I had to come to terms with the fact that I could not continue to let others down with my last minute "pull-outs." This was a real low for me. I had to give up my work as election day registrar and even more painful, I had to take a leave of absence from my Wednesday morning shift at the temple. We had bought Claigh's ticket to Virginia in December for Alyssa's wedding reception in the hopes that I would improve and be able to attend. It became apparent that I couldn't plan on it. (I am so grateful for the many kind and generous women who are helping her and for Steven's family. I am also grateful they will be married in the Draper Temple just 3 1/2 hours away. I am thankful for the family celebration following the wedding. When this was all planned, we knew nothing of what was happening within my body - just another tender mercy from the Lord.)
Sunday, October 17th, our home-teachers (elders from our church) came to give both Claigh and I blessings. These two men are dear friends. God's love is reflected in the goodness of his faithful.
On Monday, October 18th Claigh and I headed for my appointment with Dr. Haderlie. I was confident things would be quickly and easily resolved - perhaps a diet change, some medication and a little time and all would be well. Claigh quietly had a different view. We planned to make the rush-hour movie following the appointment as a beginning of next day birthday fun. We never made it to the movie.
In brief:
I have Membranous Glomerulonephritis and Nephratic Syndrome.
Some proteins are provided to the body through the food we eat. Some are created in the liver. In my case, nothing is working right in either regard. My liver is aware and over working trying to compensate and is now added to the list of things to monitor. My kidneys are currently operating at 100% capacity
but instead of appropriately sending proteins into my blood, the proteins are slipping through and being dumped. "Protein excretion into the urine (proteinuria) is accompanied by low levels of important proteins, such as albumin, in the blood, increased levels of fats (lipids) in the blood, a tendency for increased blood clotting, and a greater susceptibility to infection. The decreased level of albumin in the blood leads to edema and to the retention of excess sodium." I have been feeling "wasted" due to the lack of protein in the blood
and the high levels of acid in the blood.
With one week on the medication, my protein levels did not go down but increased to 13000. Dr. Haderlie says this puts me into the "High Risk Group." He said that many doctors would immediately start me on high dose chemo-therapy but he felt we have a little time to see if we can get things under control. (This is because other "markers" are still in good ranges.) The end of this effort will be in March. If we are not able to rein things in, I will then begin Chemo-therapy.
Due to the overwork of my liver and other related factors, My Cholesterol is at 407 mg/dl with LDL at 272.4. (HDL is 99.) The doctor says this also puts me at high risk for stroke or heart-attack.
My immune system is compromised. Dr. Haderlie said I need to be wise and stay away from crowed theaters on a Friday night, sick children etc. I will get my flu shot this week for the first time ever. - The fun never ceases!
It is not known if this is a primary disease or secondary. Dr. Haderlie said I need to work with my family doctor to immediately do my cancer screenings regardless of the last time I had them done. Undetected cancer is the likely culprit in most cases. Diabetes can also bring this about but all tests seem to indicate that I do not have diabetes. The other possibility as stated earlier is that this is a primary disease. If so, there is a 5%-30% chance that within five years it will just resolve itself, leaving my kidneys in good shape. I VOTE FOR THAT! I did have to wonder at the 5-30 range. - What on earth does that mean?
I also currently have a danger of developing blood clots with the greatest concern being a clot to the kidney which would immediately kill the kidney or to the lungs. As a matter of fact, I had to leave the Doctor's office at 5:30 p.m. and head for the hospital to have ultra-sounds of both legs due to the uneven swelling. My technician was one of the rugby players from the Highland High Team featured in the film "Forever Strong." How about that! The interesting conversation made up for the 2 1/2 hour wait, the loss of a movie night, and the overwhelming diagnosis. (Not really but it did help ease things a bit.) Claigh and I got home around 9:00 p.m., I took my meds adding the two new prescriptions and I fell exhausted into bed.
Claigh had a full work schedule in Driggs (2 hours away) the next day which was to be my 58th birthday. Trips to Driggs are long days for him which is tough when he isn't well rested, and I wasn't looking forward to being alone. I felt sucker-punched with the reality of the challenge ahead finally sinking in a bit. I slept on the couch downstairs as I have to get up throughout the night and I worry about interrupting Claigh's sleep. About midnight I heard Claigh walking around upstairs and worried that he was still up.
The next morning at 6:30 a.m., I heard Claigh come down the stairs and sit in the big chair beside the couch. I turned to say good morning and low and behold, he had grown beautiful blond hair! I was shocked to see Carey sitting there grinning ear to ear. Claigh has pulled of some big time surprises in my life but this had to be one of the best ever! After our morning prayer, Claigh left for Driggs and Carey prepared me a delicious Frittata. She actually created the frittata with 5 eggs laid by her family chickens the morning before. Yummmmm!! (Did any of you ever see Carey as the mom of six with a dog and chickens? Very fun. . .)
My dear friend Jean knocked at the door at 8:30 a.m. with a hug and some tasty dinner for later. At around 10:00, Ashlee drove up minus kids to spend the day! Surprise number two and absolutely fantastic. Two dear friends from church showed up at 11:00 - hugs and laughter.
Carey, Ashlee and I enjoyed lunch at Carinos Italian Restaurant - more laughs and memories. We ran a few errands and headed back home so I could rest for a couple of hours and Carey and Ashlee could run an errand for Cameron.
Alyssa and Steven had their engagement pictures taken last weekend and sent them via email. Of course, the three of us enjoyed some time going through them. Ashlee kept us laughing with her "great" ideas for the wedding reception. We will have a fun family time as we gather to celebrate. It is so good to see young love ready to commit to God and one faithful other. Steven makes son-in-law #5 and we are thrilled!
Early in the afternoon, in Arizona, Sara had her ultra-sound and found that after three delightful sons, she and Jared will be blessed with a little girl. That makes grandchild #20!! The day just kept getting better.
We ate a tasty supper of Carinos' left-overs followed by the white chocolate cheesecake I had made - more laughter and good conversation. Carey presented me with a fun charm necklace to match one for her and one for Jensen. Ashlee and I have been canning buddies this summer. She surprised me with a canning book we had both been admiring. My friend Bonnie stopped by to say Happy Birthday, Claigh made it home (with the new Condalisa Rice auto-biography I have been wanting to read.) around 9:00 p.m., Ashlee headed for her home, and Claigh, Carey and I settled down to watch the movie Cameron gave me for my birthday
(Temple Grandin) I fell asleep after the first few minutes but finished it this morning after I saw Claigh off on his way to the temple and Carey on her way to SLC airport.
The story of Temple is very inspirational. Thank-you Cameron. It was just what I needed. The most touching part of the story to me is when Temple seems to accept her reality as her mother reassures her. I felt something very personal in that moment.
Many of you posted birthday wishes for me online. This added to the blessing of strength, peace and the love of God I felt through what could have been a very rough day. I am deeply and profoundly grateful. A special thanks to Claigh, Todd and Steve for their thoughtful efforts in giving me a day with two of my five beautiful daughters. And as for Jean & Gary, Bonnie, Sylvia, Erica, Hilarie, Pam & Steve, Sunny, Deanna, Paula, Adeana, Bob & Jackie, Amy and Nicole - Good friends are truly one of the best blessings of life. Also, thanks to all of you who have prayed for us and added your faith to ours.
A final note: Yesterday was not only great for having my girls here but also for the fact that already with the new medications, I have increased stamina. This continues today or I would never have completed this post.
Forward and Onward!
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