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

Eye Surgery Coming Up

On the 24th we saw the glaucoma specialist. Doug's right eye pressure is good (he's had many procedures on that eye and already has lost some vision). The left eye needs something done because the pressure is rising. The specialist said we have a few options, but some would require frequent trips back to Colorado Springs for follow up. That won't be workable for us, since Doug's infusion is coming up and we don't know how that will affect him. So we decided on diode laser eye surgery next Tuesday. It is called "cyclophotocoagulation". A laser is used to destroy part of the ciliary body which produces the aqueous fluid that increases eye pressure and damages the optic nerve.
It is usually only done after other more conservative surgeries have failed. And they have. It is also only used if the vision is already very poor. That is true also. The procedure will not reverse any loss of vision that has already occurred. The goal is to stop or slow down further loss of vision. Of course we can pray for a miracle that his vision will improve!
The good part is that our local optometrist can do the follow up.

Our schedule is full. Eye surgery on Tuesday January 29. The next day is a rest day. Thursday January 31, Doug will have his first infusion of the new cancer drug daratumumab (Dara for short). The first infusion is given very slowly so the nurses can monitor closely for side effects. We are told to expect 8 hours time. At least this will happen at the hospital 30 minutes from home.

A lot is going on quickly but time is of the essence. Yesterday, January 25, Doug had the surgery to put in the port for the infusion. He has a few days to rest up before Tuesday!
Our faith is keeping us strong. God is holding us up. Otherwise we would not be still standing!

Love to all.

Verse for the day:
"Do not be afraid, for I am with you. 
Do not be discouraged, for I am your God. 
I will strengthen you and help you. 
I will hold you up with my victorious right hand."
Isaiah 41:10

Home, New Oncologist

Doug finished his last radiation treatment last Wednesday and we came home - it is so good to be home!  We are so glad we beat the big storm.
Our two dogs had such good care from wonderful friends - they are even more spoiled than usual.

The next day, Thursday, Doug got in to see our local optometrist to get his eye pressures checked. His vision had deteriorated so quickly that we thought the pressures might have skyrocketed. The pressure was up in both eyes, but not dramatically. The optometrist said "Don't drive". Doug has not been driving at all since January 2nd. We have an appointment with the glaucoma specialist in Colorado Springs on January 24. He might want/need to do some kind of procedure; we will see.

Thursday we met Dr. O, the local oncologist 30 minutes away. We really liked her. The myeloma specialist in Denver, Dr. M, knows her and says she's good. He will continue to make decisions and the two will work together. Not having to drive to Denver so much is a huge help.

 The new treatment will be a combination of daratumumab/revlimid/dexamethasone, given by infusion. We just got a call today that our insurance has approved it. Doug will get a port put in next Friday January 25. I looked it up on YouTube; if you're not squeamish, look up "Power Port". It shows video of the surgery. Having the port is safer than injecting a needle into the skin so many times with the possibility of damaging the veins.

We explained to the oncologist that Doug's vision is  a big problem, and that the eye surgeon might need to do something. She agreed that the infusions can wait a short time, until after any eye procedure is done.

Doug is tired and has had to increase the dose of his sleep aid.

We are trying to get some chores done the next few days. A lovely neighbor shoveled our driveway today. Just one of the ways we are blessed.

Love to all.

Today's verse:
"You will keep in perfect peace all who trust in You, all whose thoughts are fixed on You. Trust in the Lord always, for the Lord God is the eternal Rock."   Isaiah 26:3-4

Plasmacytomas shrinking

We are home for the weekend. The everyday things we take for granted seem like luxuries - like sleeping in our own beds and having the dogs curl up beside us for naps. I am reminded that we need to be thankful for little things as well as the big ones.

Our drive home yesterday was slow; roads were snow-packed. The weather reports said I-70 was icy in spots; we decided to come home on Hwy 24 which is a mountain road with hairpin turns but often better than I-70 which is so busy and frequently shut down because of wrecks. Visibility was immediately better on 24; the short bit we went on I-70 was so slushy and heavily traveled that we had to run the window washer almost constantly. All was well until we came up behind a semi truck that was going 15 mph. Unusual to see big trucks on Hwy 24. At least he was able to keep going uphill. For a long while there was no opportunity to pass because of all the curves. Finally I got a chance to pass. Our Subaru handled the snow pack very well. I had to use my winter driving skills and go slow but that's ok. I didn't feel scared - I knew God was protecting us.

Our good friends brought the dogs home yesterday, and they also brought us supper! Hamburgers fresh off the grill; what a treat! Friends like this are part of God's abundant provision, and we are so thankful.

Today we got the road grime washed off the car and can see what color it is. I'm doing a lot of laundry (ability to do laundry at home is another little thing to appreciate). We are also kicking back and just relaxing.

Three more radiation treatments next week. The radiation oncologist can see the plasmacytomas (you can just call them lumps) are beginning to shrink. Very good news!

Love to all.

Verse for the day:
"Great is His faithfulness; His mercies begin afresh each day."  Lamentations 3:23