January Update

I always have to look back at my last post to see where I left off. When I last wrote I mentioned that Steve was just diagnosed with shingles. Little did we know how bad shingles could get. I mean BAD, REALLY BAD. The blisters were very painful, but it wasn't until Steve started experiencing pain "attacks" that he had finally come to a point that he didn't think he could continue living with that type of pain.
The pain attacks would cause him to scream and cry out, desperately looking for relief. They could last for up to 8 excruciating minutes, several times a day (or night). He described it as if someone was holding a blow torch to his head, neck and ear. We were both tested through this experience. After several doctor appointments and one ER visit Steve was finally given some pain medicine that helped him to handle the attacks, leaving him with more of a burning sensation throughout the day.

Soon after getting relief from the shingles, the edema came back in both of his legs. This time we are not sure why. He started the diuretics and I hope we will see some results soon. For the time being he needs to stay off of his feet as much as possible (have you ever tried to keep a toddler down) that's what it's like with him!

I forgot to share with everyone the newest family member to join us here at our abode!
Her name is Cindy and she is quite adorable! Although I think our dog BB is bit obsessed with her!
This was my present to Steve for his birthday……..I know, why a hamster. What else do you give a man who has everything? (He is a big softy and actually loves the little thing)

Cindy

BB Meeting Cindy

Oh I forgot to mention how the cancer treatment is going…..well the preliminary tests results we have show the lower dose may be working! Praise the Lord.

Please continue to pray for Jim, Peanut, Maricella, Natalie, Julie, Doris, Jim and Cheryl!

Blessings to all!

Deanna

Merry Christmas

Hello All,

First I want to wish everyone a very Merry Christmas and pray your Christmas is full of the Lord's peace, mercy and grace. We are thankful for another year together and another year of serving the Lord!

Steve just celebrated a very important birthday….#70!! The Lord provided great weather (thank you to those who prayed the rain would stay away) and used my limited hosting skills and abilities to put together a party in which my adorable husband was greatly blessed. Thank you to our friends and family who were able to come and celebrate the life of my hubby!!

Zoom in on his shirt!

Last time I wrote about the challenges Steve was having and how the oncologist wanted him to see a pulmonologist to rule out any lung issues. Well he did and has has….no lung issues. After talking things over we asked if Steve could still take the pomalidomide but at a lower dose, maybe the side effects would be lessened and he would still get the benefits of the chemo. He was approved and started the lower does on 12/4. We are still waiting for Steve's M-spike results from last month. We expect it to be higher since he missed 2 weeks of treatment…but we had to do what we did and feel the increase will be minimal.

Oh and the latest in the life of a chronically ill person…..Steve now has shingles! Yep…shingles. The rash and blisters are on the right side of his neck, hairline, ear, cheek and collarbone area. The pain was terrible yesterday….but today was much better. He is on 3 new medications! Hopefully he will have a mild case, will heal quickly and not have any chronic pain issues afterward.

Many, many blessings to you and your loved ones. As always please keep the following in your prayers…they too are under going health problems. Julie, Tana, Natalie, Jim, Cheryl, Cheryl, Doris, and Maricella.

Love to all,

Mr & Mrs. L.

Latest Update

Hello All……Since my last post things have been a bit rough. Once the edema went away, Steve began experiencing some scary symptoms.

While we were in Tahoe he had what we would describe as angina attacks. When we got back home his symptoms changed to fevers, low oxygen levels, night sweats, shortness of breath. We felt it was his heart and so we first the doctors and then to the ER. They ran all kinds of test to rule out any heart or arterial problems, as well as more lung tests and they could not find any cause. So they chalked it up to a viral infection.

But…once he resumed taking his pomalidomide the fevers, low oxygen (81-82), shortness of breath and night sweats resumed. This led is to believe the pomalidomide is the reason…I even found a study on the Internet supporting our theory.

So I had Steve stop the pomalidomide on Friday night, 3 days a go……Since then his oxygen has improved, then have been no fevers, his stamina has improved and no more night sweats.

We believe it it time to change treatments but the doctor wants to send him to a pulmonologist first to rule out another cause. Which  is fine…..but Steve will stay off the pomalidomide until we know otherwise. Please pray for wisdom for the doctor and that if there is any new health issue that the doctors will find it. Most importantly we need guidance on what the next treatment should be.

Thank for your prayers and please continue to pray for Julie, Cheryl, Griselda, Natalie, Maricella, Doris, Jim and Tana.

Love Always…

Mrs. L

Papa & Rebekah

Rebekah Two Months

Here is our dear little Rebekah at 2 months!

Happy Labor Day!

Steve has been doing pretty good over all. After a year now (can't believe it) of being on the clinical trial we have seen a cyclical response with his medications….goes like this...

Friday Nights: He takes the steroid, dexamethasone. Sleeps about 6 hrs without cramps, with cramps maybe 4.

Saturday: High levels of energy, very talkative, distracted easily, and mood can turn on a dime. Not the time to make jokes that would easily be funny on say Thursday or Friday! Sleeps about 4 hours.

Sunday: Feels great early in the morning, but by 11am he is fatigued and not feeling his best.

Monday: Very dizzy throughout the day, bouts of fatigue, but he presses on. Sleeps about 5 to 6 hours.

Tuesday: Same as Monday.

Wednesday: Same as Monday but energy increases a bit.

Thursday and Friday: The 2 best days of the week. He feels pretty good and gets more rest. He's back to his "old" self.

For the past 2 weeks he has been experiencing severe edema in his right foot and ankle and moderately in his left foot and ankle. He saw his doctor on Thursday about this and had an EKG, Chest X-ray, Urinalysis, Vials of blood taken for a myriad of different tests. We are hoping to find out the cause of the edema.

He started experiencing swelling right after his bout with pneumonia back in March. But never this bad.

His M-Spike went from 1.2 in June to 1.3 in July and down to 1.1 for August. Not the greatest results but his disease is stable and that's not a bad place to be.


In July we welcomed our third grandchild, Rebekah!! And we had the pleasure of Gabriel and Abigale staying with us for a week!

Please keep praying for Steve and those I listed below. And if you would add my son Daniel to your list. On September 21st he begins 16 weeks of training at the Academy to become a Corrections Officer with the state of California. It will be very arduous for him and hard on his wife and kids, who will see less of him during this time.

Thanks so much and God Bless you richly!

Julie, Natalie, Jim, Doris, Maricella, Wint, Cheryl, & Tana



Love Deanna

AKA Mrs. L

Been A While

Hello All,

Life has been very busy. Many family gatherings, work, home repairs and projects. I didn't realize how long it was since I last posted. So sorry if you have been checking, only to see the same post over and over!
Steve has remained stable since May. The last three m-spikes were: 1.3, 1.3 and 1.2 (the 1.2 is June's and a nice surprise). So the only thing of concern that I can really report is the frequent swelling Steve has in his right ankle and foot and his proclivity to get finger infections. The swelling didn't start occurring until after the pneumonia and the infections seem to happen so easily, any opening in the skin gives the germs an opportunity to grow. He gets so much pleasure working in his garage shop on various projects that I fear he will continue to be at risk for cuts and burns. So please pray for both the swelling and infections to be minimal.

There are others who are in great need of prayer….so please include them to.

Julie, Tana, Cheryl, Wint, Doris, John, Vi, Maricella and Natalie

As always God's blessing on you and yours!

A very grateful,

Mrs. L

I Was Ready To Move On

It took a while to get the lab results for March. I actually received them while Steve was out of town. I didn't tell him the results until he came back…..his number went up. He was at 1.3 and then it went up to 1.6. he was convinced it was because he missed 4 doses while he was in the hospital. I believed the treatment was no longer working.

So when we went to see the doctor on April 23rd, I was ready to discuss next treatment options.
The nurse knew how I felt and told me she would call us with the lab results, as soon as they came in. If they were bad I wanted to begin the next step ASAP, and not wait until our usual monthly appointment.

Well, my husband received a call on Wednesday, the m-spike went down to 1.3, again! He got what he wanted, well what we both wanted. I'm just discouraged that we have been above 1.0 the whole time and the lowest was only 1.1 way back in December.

I know I'm just feeling overwhelmed from the many life changes that have occurred lately, and just eager for some really, really, really good news. I need the Lord's help in being content, and remembering we are so blessed in so many ways.

I looked up the average life expectancy for men and women 115 years ago (1900) according to the statistics we would both be dead by now!