A Sadness . . .

I received my formal release from the temple this week. This is a bit hard to take but the reality is that with every thing considered, it was very difficult to be reliable on such a stringent and demanding schedule. The biggest challenge for me emotionally is the loss of activity. I am still able to attend the temple every week with some of my Relief Society Sisters.

My stake music calling is such a blessing for me. I have many good hours to work at my snail pace and with this calling I can go to it when I have strength and energy. When needed, I can be sure to set things up to protect the energy needed. This week and last of course have been exceptions to that with the downturn and start of the new treatments but Dr. Haderlie has assured me I will feel pretty good during the chemo months and there are things I can do to manage the challenges of the steroid months. I have hope.

The Fire Saga, Impact on a Loving Spouse and Miracles . . .

Prior to Steriod/Chemo treatments:

What a deal! When I was on Lipitor, I was suffering from some poor thinking and weakened muscles. It took a bit to realize it was the Lipitor that was causing it. I was heating coconut oil to make some Navajo Taco Fry Bread. (It shouldn't have been that difficult to be safe!)

1st mistake: I left the lid on the pan.

2nd mistake: I walked away and forgot it.

3rd mistake: when I came back to the kitchen and saw the steam pouring out from under the lid, I removed the lid!

I know better!!

The flames were shooting 4 - 5 feet into the air and were in the way of the cup board where I keep the baking soda. Claigh was napping on the couch in the front room. I yelled for him and he ran in, picking up the pan and heading for the door. He had only stockings on his feet. When he got to the door, he had to unlock it with one hand, holding the pan with the other. He tipped the pan slightly spilling some of the hot grease on the living room carpet and redirecting the flames so that the inside of his index finger was badly burned. I was shuffling behind him (very weak and insecure legs) with the baking soda. He got the pan outside. Shortly afterward I caught up with the soda. Our hood/microwave took a beating and there was some slight damage to the cupboard above it.

We feel very blessed that Claigh did not burn his feet or legs. We feel very blessed that we did not set the whole house on fire! We feel very blessed that Claigh's finger has healed nicely with the help of the doctor and friends.

Lessons learned: Do not make Fry Bread when you are not able to be on top of your game mentally. Do not have the baking soda in a cupboard that could be blocked by flames. Have a fire extinguisher under the sink ready to go.

The added stress of my illness has taken a toll on Claigh. He has had a battle with his second case of shingles. His first shingles experience was over 25 years ago in Missouri.

What a painful and debilitating attack! Thankfully Claigh was early to recognize the symptoms and was into the doctor for an immediate anti-viral. This weakened the severity of the attack although he did miss a full week of work. Perhaps this provided a very needed rest from work but I am not confident the pain involved is worth it at all.

Have I ever mentioned how I love the temple? When in the temple with a friend, on Claigh's worst week, a simple thought entered my mind. It was brief and quick but thankfully the quiet and peace of the moment let me hear clearly.

A few days earlier, friends had recommended that we add oil of lavender to the regime of treatments for Claigh's burn. His finger was well on the way to healing but he needed some help regaining suppleness to the skin. Lavender oil is calming and so why not? (The price of lavender oil is not so calming.) The progress of the heal quickened noticeably.

Back to the temple, "Claigh needs to use the lavender oil on his shingles." That was it. Quick. Unrelated to anything else that was happening. But clear.

Claigh's pain from the shingles was just really working up to a fury at that time. He had just received a powerful medication for nerve end pain that was taking a toll on his functionality. When I came home and told him I felt we needed to use the oil on his shingles, he immediately felt it was a right idea.

Honestly - the answer to prayers is an amazing testament that we are loved by a perfect Father. Claigh had only taken one of the vamped up pain medications. The lavender oil soothed and managed the rest. He was back to work the following Monday.

Through it all, we are blessed!

Forward . . .

I'm with you Harry on the natural health solutions but in this case I am very thankful for the miracles of modern medicine. This is an auto-immune disorder and is very dangerous. My Dr. and I have tried less intensive solutions but things have progressively worsened in spite of our best efforts. Now is the time to really hit hard. I have hope that I will fall into the 30% who have complete remission. The bad news - my protein loss and cholesterol are way over the critical levels. (high risk protein loss is 8 grams - I am over 16 grams, my cholesterol is over 550 and climbing with 444 of that LDL. My triglycerides are 116 as well - Whew!) The good news, Dr. Haderlie says I am so healthy in all other respects that it is very unusual for someone with such a serious disorder. This is due to my taking such good care of myself physically over the years.

My thinking is clearer now that I am off of the two Statins that caused me trouble and led to the fire incident. Claigh's burn has healed nicely and he has overcome the worst of the shingles he was battling. I have to start a new statin next week in hopes of getting the cholesterol under control a bit. Non-flushing Niacin didn't do a thing for me. As I said the liver challenges are not related to diet but are a direct result of the immune system attack on my kidneys. We are hopeful I can tolerate this statin without muscle loss and mental confusion.

I had a great afternoon yesterday followed by a very difficult night and tough morning this morning. I struggled with a severe headache and bright-eyed sleeplessness. Tonight I will take a sleep aid - for me that is huge as I have an aversion to medicating myself but it is necessary if I want to keep my sanity.

The nurses at the infusion lab are wonderful. I am so thankful. It was recommended that I try Pepsi or Coke for the caffeine to combat headaches. OUCH! I have decided that instead of that I will do caffeinated Green Tea. Green Tea is great for kidneys and I have been using decaf for a while. By going this route, I will get the caffeine but not have the sugar/carbonation hit I would from the sodas. I could hardly raise my head with the pain this morning. I pray for inspiration as to the best solutions with the fewest side effects. My stomach has already been feeling the stress of the medications.

Carol was kind to get me to and from the hospital. That was a smart choice. I really wasn't fit for driving. What would I do without such good souls who are so willing to help out.

This afternoon is better again. I have managed the laundry and ironing. (Claigh's 7 white shirts a week habit over the years keeps me busy :D) It feels so good to get some things done. It does something positive for my psyche when I can work a bit. Claigh will do the grocery shopping on his way home from work tonight. Another friend is bringing dinner. I really appreciate this as it gives Claigh something tasty at the end of a very busy work days.

I missed you Alyssa and hope you get over your bug soon. I am still hoping to be strong enough Saturday to share the Julie Beck address with you.

Progress?

Thanks for the yummy chicken and baked potato Jean and Gary! Just right!! It was so kind and very appreciated. Thanks for the flowers JoAnn and Terry. You are two of the dearest souls! AND an especially heartfelt thanks for all of your prayers and concern. I am so blessed and grateful.

I had mixed things up a bit. There was just too much information to keep it all straight. The infusion today was a steroid, Solumedrol. This will continue with 1000 mg IV daily for each of the initial three days. I will then start on high dose Prednisone by mouth for thirty days followed by thirty days of a chemo treatment, Cytoxan followed by thirty days of Prednisone etc. This will continue for six months with hopes that I will see results by then. The longest they can take this treatment is one year. I have a 30% chance of by body throwing off this assault against my kidneys.

Following the treatment at the hospital, I still felt lousy but good enough to pick up prescriptions and the very needed Peppermints at the drug store. I also got crab SUBWAY. This afternoon was a bit rough as I experienced extreme fatigue. The metalic taste in my mouth from the treatment is AWFUL! I had hoped it would go away but alas it seems it will be a part of my life for the next few days. Thank-goodness for Reed's Extra Ginger Ginger Beer and Cherry Ginger-Ale. Doublemint Gun seems to distract me for a while too.

While the last four days were quite rough and this morning started out very tough, when I came out of my deep sleep again at 4:00 this afternoon, I felt better than I have for a week. I still have a slight headache and the nasty taste but I have strength in my legs again and clear thinking. My right ankle is normal and the left one smaller than it has been in months. That IV carried a powerful punch. It makes me hopeful. I am sorry for rambling - so much to process.

My friend Carol Stewart will get me to and from the hospital the next two days. Thanks for your generous and kind willingness to help me Carol. I did well today, but with all of the new medications starting today, the warnings are that I should give some time to see my reactions before I drive. I believe in responding to cautions. I don't want to be undone on the road even if it is just a short 5 minute drive.

Love to you all, Mom/Wendy

Tough News For Me This Week . . .

This past week has been a bit overwhelming for me. I knew what was coming but held out hope that it wouldn't be.

The day after I had my labs done, the doctor's office staff called me with alarm. My cholesterol was 550 (444 of that LDL.) I had a very severe reaction to the Statin I was on and had to be taken off of it. I have reacted badly to the second Statin as well. We are going to try a third as Dr. Haderlie is afraid I will suffer heart damage on top of all the kidney and liver trouble I am in. If this Statin doesn't work we will have to try something less effective in managing the cholesterol. The cholesterol is a direct result of the kidney challenges I am having - not at all related to diet.

Also, my protein loss remains very high. While I have felt better as a result of the medication, there is no improvement - only decline in my ability to process protein and provide what is needed to my blood.

This morning Dr. Haderlie told me we are out of easy options and it was time to pull out the heavy artillery. While we had hoped to give the efforts we were making until the end of March, it is critical that the time table be moved up. (I am so sorry Sara.) I left the office with many cautions and warnings and seven prescriptions. I will be on a schedule rotating between a month of Chemo Therapy and a month of very heavy steroid treatments. We had hoped to avoid this as these treatments bring some pretty heavy risks and yet to do nothing would be worse.

The Chemo I will have is not the same as the one used for say Lung Cancer. I will probably actually feel pretty good the months I am on Chemo. I will not loose my hair. If I did not tell you, you would not even know I was having Chemo. Dr. Haderile said the big risk is that it will shut down my immune system. (My problem is that my immune system is attacking my kidneys and if left unchecked, it will kill them.) We want to stop this attack while I still have good kidneys to save. He also stressed that while I am in this treatment program, I will have to be extra cautious staying away from any one with the slightest cold or infection. He said he knew this would impact the contact I would be able to have with grandchildren but it would be important that we all take things very seriously. Church attendance will be Okay but again I will need to be extra careful and trust others to be mindful as well.

The high doses of steroids are going to be a big challenge. The harshest of the steroids are the ones that have proven successful in battling this illness. I will have a ravenous appetite and could be challenged with more weight gain. He said if I am mindful of this, I can monitor my eating by watching the calories. The natural feeling of "being full" will not help because the steroids interfere with that signal. Even with the care I take with my eating, I will get very puffy.

Dr. Haderlie had so much to say, I am really overwhelmed. On these other side affects, I can't remember which are caused by the Chemo and which are caused by the steroids:

1. I will be at a higher risk for developing diabetes. This is a shock as heredity already puts me at a very high risk. I "think" this is related to the steroids. On the months I take the steroids, I should be extra careful diet wise as far as sugars go. I will have to clarify with the doctor if it is the steroid months or the chemo months that this applies.

2. The treatments put me at a higher risk of developing cancer.

3. My bones are going to take a hit. I will need to be on double the recommended doses of Vitamin D and Calcium to try and counteract the impact of the treatments.

4. The lining of my stomach will take a hit. I now have a prescription for an acid medication to counteract that.

5. I could suffer with insomnia. I have a prescription for sleep medication if that becomes an issue.

Because of all of the risks involved, I will now have the blood & urine tests and see the doctor every three weeks instead of six. Dr. Haderlie also gave me his cell phone number so that I could reach him at all times. I can't say enough how confident I feel in his care and ability to give me the best chance I can have.

Dr. Haderlie is hopeful we will see some positive results in six months. At that time we will re-evaluate. The longest we can utilize this treatment plan is one year. Because of the risk factors, shorter is better.

I don't know why this is my life at this point but I do trust in my Father in Heaven's love. I feel so blessed to know and understand The Plan of Salvation. I am confident that there is great purpose in this life and trust that I am clay in the hands of the potter. The sadness I have felt the last couple of days as I have come to terms with what was coming will not get me down! I am in the process of taking a deep breath and allowing myself to be comforted by the power and warmth of the Holy Ghost. Those of you who know me best know that for me control is a very big deal. I think it is an especial challenge for those whose childhoods are out of control. I have to let go and trust God in a way almost as great as I have had to do as a mother and that is big.

I am also very aware that there are many whose struggles are much greater than mine. This is life! We each have our share of blessings and challenges that is for sure.

Please keep Claigh in your prayers as well. I am very aware of the challenge this is for him. We had other plans for our lives at this time. Our hopes for missions after retirement are still there but who knows the way things will go.

There are things I can't control but I am determined to do all that I can to regain full health God willing. I look back over my life and marvel at His hand in my life all along the way. Forward and onward!