Scleral lenses work! Infusion on hold.

The good news first - Doug can see much much better with the scleral lenses! This is an answer to prayer. He has to get used to wearing them before we know if he can drive. And he has to get used to putting them in and taking them out. So far it is tricky; there is a little suction cup thingie to use for insertion after filling the cup of the lens with a sterile solution. He has to hold his head horizontally so the fluid stays in the cup. Getting them out was difficult the first time. It's a learning curve for sure. But we are thrilled that they work - the optometrist was excited too; he wasn't sure they would work.

The bad news: the chemo infusion was not given today. Doug's white blood cells are too low. Normal WBC (white blood count) range is from 4.5 to 10. Doug's was 2.0.
The white cells that fight infection are the neutrophils. Doug's ANC (absolute neutrophil count) was .9 - normal range is 1.8 to 8.3.  So Doug does not have normal infection fighting ability right now. He is officially neutropenic. Not what you want to hear during flu season!

The oncologist wants to wait and see if a week off treatment will bring the counts back up without using Neupogen.
We are hoping that a week off treatment will perk Doug up, especially the fatigue. He is also losing  his appetite some.

This is all part of the roller coaster on a trip in Cancerland.

Love to all.

Today's verse:
"Give all your worries and cares to God, for He cares about you."
1Peter 5:7

Infusion #3, Exciting news for eyes

My caregiver stress has lessened somewhat. I'm sleeping better - that is a huge help. I've been able to spend some time with friends, and of course the best - keeping my eyes on Jesus. That's not always easy; I have to make that choice every day.

We went to our local optometrist Wednesday. He is a smart guy. He knew Doug's low vision wasn't due entirely to the glaucoma. He figured there was a problem either with the back of the eyes, or the front. He decided to try something we had never heard of - scleral lens. He fitted one on Doug's left eye ( a complex process) and had Doug try to read the eye chart. For the past couple of months Doug has not been able to read any of the letters. With the sample scleral lens he was able to read a few lines! Wow, that is exciting! The optometrist spent a lot of time fitting and measuring and taking 'pictures' on his high tech equipment. He is ordering custom lens for each eye. When they get here, Doug will have to learn how to work with them. One article I read said they are sort of a prosthetic for the eye; they float over the eye surface, without touching. They create a smooth corneal surface on eyes that have scarring. To learn more, go to the website sclerallens.org

Today was infusion #3. The drug protocol allows for increasing the rate of the drip on the third treatment if no problems have occurred on the second. This means 'only' six hours in the clinic - the infusion was completed by 2:00. We were pretty happy with that as it shaves two hours off the time. This should be fairly consistent from here on.
Doug is experiencing several side effects from the drugs. Fatigue continues; he just has no energy for anything. He's having some GI problems - I won't go into detail but you can imagine. Sleeping is not good. The doc is jugging some of the meds to try to get him more comfortable. Not the treatment drugs, the pills that are supposed to alleviate some of the side effects. We are thankful for the many excellent medical people who are caring for Doug.

Quote for today:
"When I trust deeply that today God is truly with me and holds me safe in a divine embrace, guiding every one of my steps, I can let go of my anxious need to know how tomorrow will look, or what will happen next month or next year. I can be fully where I am and pay attention to the many signs of God's love within and around me."     Henri Nouwen

Caregiver Stress

The second infusion on Thursday went well - no reaction. We got to the infusion center at 8:00 a.m. and left at 4:00 - much faster this time.  No driving in the dark!
The infusion nurses take such good care of their patients. Heated recliners (with massage) help a lot when one is sitting for such long times. Caregivers don't have recliners but I had a comfy glider; the rocking action is nice. Patients can eat during the infusions; Doug got breakfast - he didn't know what he wanted so the nurse brought him a tray of hashbrowns, scrambled eggs and bacon. Portions were huge! He will ask for smaller amounts next time.

When the massage therapist gave Doug his foot massage, she noticed a rash on his feet - because of his impaired immunity, he has athlete's foot! The oncology NP looked at it and prescribed a cream. We have an appointment to see the foot/ankle Dr on Monday. Don't want that to get out of control.

So next week we have three medical appointments: foot doc on Monday, optometrist on Wednesday, infusion on Thursday.

I'm thankful that Doug is able to tolerate the treatment so far, and for his good attitude. He is very patient with my driving and never complains. He is a man of faith.

I am experiencing some caregiver stress. It's hard to relax, sometimes hard to sleep and sometimes I get irritable and have low energy. I think most caregivers experience this over the long haul.
 I have been reading the Psalms and talking to God, and writing in my prayer journal. We can be honest with Him, and "vent". I know God is always with me; I have to ask Him every day to guide me. And He does! I think it is during hard times that we grow closer to God. I experience stress when I 'forget' to turn it all over to the Lord and trust Him unconditionally.
Talking to treasured friends and playing with the pups is a big help too. And going to see my nurse practitioner.
I thank God that He enables me to be a caregiver.

Love to all.

Verse for today:
You light a lamp for me. The Lord, my God, lights up my darkness. 
Psalm 18:28

First Dara infusion

Doug had the diode laser surgery on his left eye on 1-29-19. The procedure went well but it will be some time before we know results. After surgery, the eye pressure, and thus vision, can fluctuate for several weeks. So he still is not driving and we don't know if he will ever be able to see well enough to drive. 

on 1-31-19 Doug had his first daratumumab infusion at HRRMC. Dara is a targeted therapy. a monoclonal antibody directed against CD38, a molecule present on myeloma cells. He also takes Revlimid pills after the infusion, and dexamethasone tablets the day after. 

It was a marathon day. We pulled into the parking lot at 8:00 am and drove out at 7:00 pm.  

Several things have to happen before the infusion can start. First the nurse accesses the port using sterile technique. Then blood is drawn and sent to the in-hospital lab for testing. Sometimes the blood values drop low enough to temporarily halt treatment.  When results come back and the oncologist approves, the order to proceed is sent to the lab so they can prepare the solution. Also after the oncologist approves,  the pre-infusion meds are given, to lessen side effects. Doug got benadryl, dexamethasone and tylenol in his IV. The benadryl made him nice and relaxed and somewhat drowsy. One hour has to elapse after the pre-meds before the infusion can begin. So the first two hours were spent getting ready. 

Doug did have a reaction to the Dara, which happens to 50% of patients during the first infusion. They get a sort of allergic reaction that causes the upper airway to swell; if not treated quickly the airway can close down. 

Doug's nurse was watching him pretty closely without being overbearing. 

She told Doug what to watch for, so when he felt a little sore throat, he told her. She immediately stopped the dara infusion (temporarily), started some rescue drugs (solumedrol and pepcid) into the IV and called for the doctor and a respiratory therapist who came and gave him a bronchodilator (albuterol) with an inhaler. He had to breathe into a bag for five minutes. Because the nurse caught it quickly, there was no sense of panic, just teamwork and efficiency. Doug stayed calm. This happened about two hours into the infusion. 

Once all that was done and he was ok, the infusion was resumed at a slower rate.

A very long day! But at least we were home 30 minutes after leaving the hospital. I did have to drive in the dark - I just went slowly and prayed. We both were very tired. 

He will get the infusions once a week for two months, then every other week for another two months, then once a month, and continue once a month. He will continue on this drug unless he can't tolerate it, or until it no longer works. 

The infusion center here is amazing for a regional hospital. We know a few of the nurses from past infusions. They are all excellent; compassionate, cheerful and competent. We are confident in the care Doug is getting, and so thankful to receive this level of care close to home. 

Now hopefully a few days of rest. Neither of us is sleeping very well. 

Today's verse:

Fix your thoughts on what is true and honorable and right. Think about things that are pure and lovely and admirable. Think about things that are excellent and worthy of praise. 

Philippians 4:8