Passed Out, stopped Lisinopril

We had some drama in the early hours of November 28. I awoke to a noise, and found Doug on the floor! He had passed out in the hallway. By the time I got to him he was awake but couldn't get up. While trying to get up, with my help, he passed out again! He wasn't responsive for a short while - scared me. I called 911 but by the time the squad got to us, Doug seemed okay. I had left him on the floor until they arrived. The squad took him to the ER to get checked out. The ER doc thought it may have been a TIA or dehydration. Doug got a tetanus shot for a small forehead abrasion; fortunately there were no other injuries, thank God.
A few days later our NP ordered an ultrasound of Doug's carotid arteries just to be sure he has adequate blood flow; that turned out normal.

Today we had an appointment with Doug's nephrologist/internal medicine guy, Dr. K.  Doug's membranous glomerulonephritis (kidney disease) is in remission!
Doug's blood pressure has been on the low side for quite some time. No one worried about it as he was not dizzy - until recently. Dr. K says if Doug is passing out, his blood pressure is too low! So he stopped the lisinopril. He also feels Doug is still dehydrated, although he really has been drinking more water. Dr. K also stressed that Doug needs to exercise as much as possible. I'm so glad that a good friend gave us her elliptical machine a few months ago. That's a huge blessing especially in the winter.

Doug is on metformin for his secondary diabetes, plus he is counting carbs. I have discovered that a lot of low carb recipes are high fat! We're not doing that. We're doing common sense eating, limiting starchy foods, and no sugary stuff. And Doug tests his glucose twice a day.

God bless you all. 

Secondary Diabetes

Doug now officially has "secondary diabetes", which means it is from a drug he is taking. In this case, prednisone, part of his myeloma treatment. He has been started on metformin and is using a glucometer to test his blood daily. Adjustments might be necessary once we see if the metformin controls it.
And his right eye - the one that had surgery for glaucoma - has high intra ocular pressure again. The eye surgeon says Doug is still in the post-op phase and it is possible for the pressure to jump around.

Finding out that Doug is now diabetic, and getting a glucometer after a run-around with medicare, has been a bit stressful. We will adjust.

Happy Thanksgiving to all!

Light Chains Dropping!

Report from the latest myeloma panel came back - Lambda light chains are down from 269 last month to 38 now. Wonderful! This is still a bit high, but means the current PCP treatment is effective. Praise the Lord!

On the glucose front, the A1C lab report is 7.8 Too high. Normal range is 4.5 to 6.0
We are still waiting to get the glucometer. The order from the doc was coded incorrectly. Unfortunately, codes are everything in the medical world, where orders are concerned. So we wait.


"To one who has faith, no explanation is necessary. 
To one without faith, no explanation is possible. "      Thomas Aquinas

High Glucose

Doug's right eye is healing from the surgery, just a slight black eye now. We found out the device is an "Ahmed valve". And we found a video of the surgery on Youtube! It was interesting to watch and we think it explains why Doug had a lot of eye pain afterward. How could it not hurt? Doug has had two follow up visits and both docs said it looks good but still has a lot of healing to go. However neither was the surgeon. Doug goes again to our local optometrist next week for a check and finally we see the surgeon ophthalmologist December 10 when he travels to Salida. Meanwhile the eye drops continue - five different kinds counting both eyes.

Yesterday we went to Denver to see the myeloma specialist. Doug is tolerating the PCP treatment well. We won't find out the effectiveness until the myeloma panel results come back. His blood counts are within normal limits except the glucose is a very high 199. Dr. M thinks it could be the beginning of prednisone induced diabetes. He is referring Doug to our local nurse practitioner for monitoring and treatment if necessary. Just another evil to combat. We are glad there is treatment!

We had good travel weather both ways, and Doug felt up to driving. We keep counting our blessings.

Love to all.

On PCP for two weeks, glaucoma eye surgery

Doug started his Pomalyst, cytoxan, prednisone treatment two weeks ago. No side effects to speak of, other than fatigue. We know that some side effects are cumulative and don't show up right away. This seems too good to be true, that he can take the pills at home - no travel, no side effects. Love it! Just hope it is effective in lowering the light chains.

Doug had glaucoma surgery on his right eye four days ago. He had had shunts in both eyes done two years ago, but those shunts plugged up and stopped working. Pressure rose to the point of causing damage to the optic nerve in the right eye. So a glaucoma specialist suggested having a different kind of shunt this time. Only one eye at a time. The last shunt placements went so easily, and we didn't expect this time to be much different. The surgeon used a nerve block in the eye, to make sure there was no involuntary eye movement. No nerve block two years ago. When Doug was wheeled back in the room post surgery, the nurse told us that Doug would have a black eye. Sure enough, he has quite a shiner. No one expected a lot of pain - but when the nerve block wore off several hours later, Doug was in a LOT of pain. Tylenol didn't do anything. We had stronger pain meds on hand, so finally got the pain under control.
When I reached the optical office by phone, the nurse had several questions, and in the end, she said Doug must have had a corneal abrasion. (Scratch on the eyeball surface.) She said that doesn't happen often. I had that 40 years ago and I remember the pain very well.
So although his eye looks awful, he feels okay now, and can see out of that eye. Just was a lot of drama for a while. Now Doug is making up stories of how he got such a big black eye.

Will Start PCP treatment

We made the trip to Denver to see the myeloma specialist.
He just got back from a myeloma meeting in Rome Italy. Myeloma specialists from all over the world meet every two years to discuss this disease and learn from each other. We're so fortunate our Dr. M goes to these meetings. He is so well informed about the latest treatments. There is a new monoclonal antibody called Dara that will be approved by the FDA by the end of the year. We would have to come to Denver very frequently in order for Doug to receive it, because the local oncologist is not familiar with it. So that's not a good option for us.

The chemo vacation is over. Doug's light chains continue to rise so he needs to be on treatment. Dr. M gave us two good options:
1. Carfilzomib (Kyprolis), Revlimid and Dex.
  The combo is known as CRD. This treatment would be given by IV two days a week and would require that Doug get a port. Possible side effects include heart and kidney problems and lung damage.

2. Pomalidomide (Pomalyst), cytoxan and prednisone.
  This combo is known as PCP and is all oral, so Doug can take it at home. The pred is not as strong as the dreaded dex, so he wouldn't have the insomnia and "wired" feeling as with dex. This particular treatment is used for patients 70 and older. Doug isn't quite 70 but he's close.
Possible side effects include fatigue, weakness, low blood counts, gastrointestinal effects, shortness of breath. We'll continue to go to Denver every month for monitoring, and Doug will get blood tests done locally every week at first.

We thought it was a no-brainer. PCP is less toxic and is all pills. Dr. M says it is a good choice for Doug. Doug will start this as soon as the insurance hurdles are complete.

Dr. M dropped the Zometa back to every three months now. Doug is glad of that.

We've been getting out to enjoy the fall color and the beautiful weather. We've done several geocaches which we really enjoy.

Both Doug and I feel so blessed. The availability of good treatments, our excellent specialist, insurance and grants for the expensive drugs, our faith in God, supportive wonderful friends. God is good!

Love to all.

Lambda Light Chains Go Up Again

Last week we had the monthly myeloma specialist visit in Denver. He said he is happy because Doug is feeling good. So at this time he does not want to start Doug on chemo. Sounds good to us!

Today we got the results of the special myeloma panel blood work. The Lambda light chains are up again (from 77.88 last month to 130.02 this month) and the Kappa is down again. The ratio is .07 now. Not good, but as I keep saying, we expect to see this - it's inevitable. At some point treatment will need to be restarted, but for now we will keep enjoying this "chemo vacation".

We have done a few geocaches, and today we walked a path by the river. A friend gifted us with a used elliptical machine, which Doug is able to do; he needs the exercise. We are both using it. I was going to say 'enjoying' it, but that's a stretch, at least while we get used to it.

Doug is getting acupuncture for his peripheral neuropathy. He's had several treatments, and although he can't tell any difference, I think his gait is better. No telling if the acupuncture is working, or if elapsed time is helping. Either way, life is good. Praise God!

Love to all.

 “The man who has forgotten to be thankful has fallen asleep in life.”   Robert Louis Stevenson

Kappa/Lambda Ratio Low; Early Relapse?

We got the results of the latest myeloma panel. Up to now, both the Lambda and Kappa light chains have been rising - but the ratio has been within normal limits. Now the Lambda is rising and Kappa is dropping, so the ratio is low. The specialist has been watching, and he said as long as both go up, it could mean recovery of immune system. If Lambda goes up more than Kappa, it could mean a relapse.

And now the myeloma panel shows a slight M-spike. This is the first time we've seen an M-spike since the myeloma mutated to light chain deposition disease back in 2011. Interesting, but may not be anything to be concerned about.

We have faith in the specialist and we know he has a plan, so we are not worried, just alert for changes.  Knowing there are new drugs available is reassuring.
We also have faith and trust in God, and we know HE has a plan!

Both Doug and I have been expecting another relapse at some point, that's the nature of the beast. Sometimes the myeloma sleeps, but it always awakens eventually.
Meanwhile, Doug feels good and we are grateful.

Love to all.

"Peace isn’t the absence of the dark. Peace is the assurance of God’s presence in the midst of the dark." Ann Voskamp 

IgG now, was IgA

The regular monthly trip to Denver today. We had an 8:30 a.m. appointment so left at 5:30. It was already almost light out, thankfully.
Lab results are mostly okay, with just a few borderline but nothing alarming. We won't get the myeloma panel results for 5 to 7 days.
Interestingly, Doug's myeloma has changed from IgA Lambda to IgG. The specialist isn't sure what this means, either a lab error or the myeloma is changing. But he doesn't think it has any significance as to treatment in the future.
Doug is still on chemo vacation. He's not having clinical problems (aside from the neuropathy) so the specialist doesn't want to initiate any new drugs yet.

Doug didn't get the Zometa infusion this time, since it had been only three weeks since the last one. He'll get it next month. That saved an hour of infusion time.

So it was a good visit. Afterward we stopped for a late breakfast - in the hospital cafeteria of all places. They have really good hash browns and sausage. Eggs are passable. And we didn't have to move the car.

We are counting our blessings and praising the Lord!

Love to all.

Light Chains Still Rising; no chemo yet

Doug had his  monthly Denver myeloma specialist visit last week. The cancer numbers - Lambda light chains in Doug's case - are starting to rise a bit faster. But the Kappa light chains are also rising, so the Kappa/Lambda ratio is within normal limits for now. As long as the ratio is okay, Dr. M doesn't want to start the new chemo yet. Sounds good to us!

The peripheral neuropathy in his feet is still present, but Doug is able to cope with it. Dr. M says we have the option of trying Cymbalta, but we decided against it for now. Better not to add another drug to his system unless he really needs it.

Summer is in full swing here, with the usual influx of summer people. Traffic is busy by our small town standards, and our only grocery store is swamped. Best not to complain too much since the tourists spend a lot and that helps our tax base.

We have started geocaching again after several years of Doug not being able to do it. Fun way to get outside and be more active.

Love to all.

Cold/cough; Eye Infection

We had to cancel our trip to Nebraska again. Last month we cancelled due to Doug getting the flu.
This time he developed a cold with cough and a slight fever. And green mucus in both eyes.

We called our local clinic but couldn't get in yesterday. Today is Saturday and the clinic is closed. We had two choices - go to Salida to the ER, or drive up to Leadville to the urgent care clinic. We opted for Leadville. Doug was seen by a young PA who was very good. He took an excellent history and did a brief physical. He prescribed an antibiotic eye ointment and said to do warm compresses on the eyes every four hours. The cold is most likely a viral infection. He refilled a codeine cough syrup that has worked for Doug in the past, and considering Doug's compromised immune system, prescribed an antibiotic to prevent further secondary infection. We were very happy with the level of care at this clinic.

Doug's blood pressure is low at 101/67 but he's not dizzy. We're going to keep checking the BP.

We are counting our blessings, especially that all this came on before we left home on our trip. So much better to be home when not feeling well!

Love to all.

Off Gabapentin; Kidneys doing good

Doug has weaned off the gabapentin, with the doc's approval. The increased dose wasn't helping the peripheral neuropathy, and it was making him very drowsy. So he decided to quit it since we have an upcoming trip to Nebraska.

Doug has finished his physical therapy; it has helped him. His gait is still off, but better than before, and his balance is quite a bit better.

Yesterday we went to the nephrologist in Salida. He says Doug's kidneys are doing pretty good now. Just lay off the salt! He never tells anyone "no salt" since he knows they won't do it, but reduce salt. The doc is putting Doug on a small dose of Lisninopril. It's a blood pressure drug; Doug's BP is already on the low side, but the kidney specialist says Lisinopril helps protect kidneys from the myeloma protein. So as long as Doug's pressure doesn't drop too low he wants him on it.

We have an appointment with the myeloma specialist June 19. For now, we are doing well, and enjoying the warmer weather. We started up geocaching again - haven't done that for some time. Doug can't do climbing or actual hiking, but there are quite a few easy caches to find. Fun way to get outside.

Blessings to all.

Light Chains Rising

The latest myeloma panel shows Doug's Lambda light chains are rising - doubling from last month. This what is used as his cancer marker. Obviously this is not good, but right now the light chain level is not alarming. Just a sign the cancer cells are awake, maybe starting to rumble a bit. We already know he will need to restart treatment at some point, maybe in the near future.

The new dosing of gabapentin - 600 mg three times a day - is making Doug tire even more easily, and sometimes a bit dizzy, but its too soon to tell if it will help the neuropathy. Naps are a good thing. Otherwise, he is feeling pretty good.

More Gabapentin

Doug has recovered from the flu and is gaining strength every day. He is back to Physical Therapy and the dreaded exercises. We even went out to lunch the other day - something we haven't done for a while. We tried a new lunch place in town and really enjoyed it.

Yesterday we went to Denver for the monthly oncology check. This time we saw the specialist's nurse practioner because the specialist was on a bicycling vacation in Italy. He always comes back refreshed and "pumped up", pardon the pun. The NP is very good; we have seen her before. Since Doug still has the peripheral neuropathy in his feet, she suggested increasing the Gabapentin dose. Currently he takes 600 mg twice a day. He will now be taking 600 mg three times a day. If he can tolerate it, that is. Gabapentin can cause dizziness and mental fog.
While in the clinic, Doug got his infusion of Zometa.

Still on chemo vacation, as long as the cancer numbers are not rising too high, and he continues to have PN.

Praise the Lord for his provision!

Love to all.

Flu

Doug is on day five of having the flu. It started late on Saturday - it seems a lot of illnesses start on the weekend. Luckily, a few months ago, at the height of the flu season, our PCP wrote prescriptions for Tamiflu for both of us. We didn't need it then, so the pharmacy kept those scripts on file. Early Sunday morning, I was able to fill Doug's prescription for Tamiflu and get him started on that. I think that helped a lot. Doug has had fevers, chills, sweats - just feeling crummy and not wanting to eat. Yesterday we were able to get an appointment at our local clinic. Our wonderful nurse practitioner added an antibiotic just to make sure all bases are covered as far as him getting a secondary infection.

Doug's physical therapy has been slow to show results. Now, of course, he is weakened by the flu so he will have to really work to regain strength. But he will.

We had to cancel a trip to Nebraska. We were planning to go see Doug's mom who is 102 years old. She is doing well considering her age.
I'm thankful he got sick before we left. Always better to be home when we are not well.

"May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ." 2 Thessalonians 3:5

Need Physical Therapy; still on chemo vacation

Monday we went to Denver for the monthly myeloma specialist appointment. Doug's basic labs are okay. We should get the myeloma panel results in about a week. He decided to keep Doug on the chemo "vacation" for now.

The peripheral neuropathy still bothers Doug's feet, and he hasn't been walking much. Dr. M said to go ahead and increase the Gabapentin from 300mg BID (twice a day) to 600mg BID. Amitriptyline remains at 50 mg.
Dr. M wants Doug to exercise more. He observed Doug getting up on the exam table, and said Doug is not using his leg muscles properly. He wants Doug to go to physical therapy, for strength and balance. I think that is an excellent idea. We have a very good physical therapist right in town. I went to her last year when I tore ligaments in my ankle, and my balance improved a lot.

The fatigue is still present. I was hoping that would lessen since he's been on chemo vacation. Hopefully, the physical therapy will get him to a place where he is able to walk more and have more energy. Our weather is warming up; if we can get out and walk on some of the easy trails I think it would boost Doug's spirits. Sitting around in the house isn't good.

We had good travel both ways. I'm glad Doug still likes to drive and is able to.

We thank God for our many blessings.

Sleeping better!

Good news and not so good news.

The really good news is that Doug is sleeping much better. The combination of gabapentin and amitriptyline is working for the neuropathy. We have also added vitamins B6 and B12, on the theory of 'it can't hurt'. His toes and bottoms of feet are still numb, but as long as he can sleep the numbness is tolerable. And he walks like a duck but who cares?
We saw the foot and ankle specialist today; he sees PN in some of his patients. He tested Doug's feet and toes with a slightly stiff nylon needle-like thingy. Doug couldn't feel it. He cautioned Doug not to go barefoot because he could step on something and not even know it. He said he sometimes sees improvement in PN after a whole year.

The results of the latest myeloma panel blood test came today. Comparing it to the last two months, we see a slow but steady rise in the cancer numbers (Lambda light chains). Of course this is not good. But the numbers are not at the alarming stage yet, and hopefully won't be for quite a while. It would be great if the oncologist would keep chemo on hold for the next few months. At least there is a plan on what drug to use next.

So we are doing just fine for now. It's important to enjoy the present and not worry too much about the future.

Love to all.

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”    

Matt 6:34  The Message

Chemo still on hold; PN still a problem

Last week our oncologist had phoned in a new prescription for the neuropathy since Lyrica didn't work. He wanted Doug to try Remeron (generic mirtazapine) 7.5 mg. Well that didn't work either. We are learning that sleep deprivation causes a host of problems! And Doug has developed short term memory loss on top of everything else.

Yesterday we drove to Denver for the monthly oncology appointment. Dr M, our myeloma specialist, was dismayed to hear the Remeron had not worked. He said to discontinue it. He said PN can take months to resolve. He said there are many remedies but everyone reacts differently - "different strokes for different folks". Now he wants Doug to start amytriptyline at 50 mg (at 25 mg it didn't work), and if necessary go to 75 mg, then up to a maximum of 100 mg. In addition, gabapentin 300 mg twice a day to start. That dose can be raised too.

The specialist gave us this list of OTC things to also try, in this order. He says try one, then add the next if necessary.
1. Vitamin B6 100 - 150 mg
2. Vitamin B12
3. alpha lipoid acid
4. glutamine
 Capsaicin cream (short acting but can help some)

He said acupuncture helps some people.
Cymbalta would be the next prescription if amytriptyline/gabapentin doesn't work.

I told Dr. M about Doug's short term memory loss, and he said that is probably due to Doug taking too much lorazepam. Doug says he will back off of that.

So we spent quite a bit of time talking about neuropathy before we even got around to discussing the myeloma! Dr. M wants to hold off on chemo if possible until Doug's neuropathy is under control and he is able to sleep better. He will watch the blood tests closely for myeloma numbers. When he does restart Doug on treatment, the drug will not be Velcade! He said he wants to do carfilzomib (Kyprolis) next.
Doug will keep getting the Zometa infusion every month, to strengthen his bones.

We felt this was a good visit. We are thankful to have such a good myeloma specialist who spends as much time with us as needed to make sure we understand.

I have a new iPhone app called Supernote; I tried it to record our conversation with Dr. M and it worked great! I always take notes but this will be a good way to make sure we get all the information down.

Love to all.

Lyrica not working for PN

Doug is tapering off the Lyrica - it has not helped with the neuropathy in his feet. We gave it a try, but we think it would have had some effect by now, so we consulted with the oncologist and he said to be sure to taper off it, not stop suddenly. Lyrica is not on the formulary for Doug's Plan D pharmacy, so our co-pay was several hundred dollars. Oh well, it was worth a try.

Doug is still having trouble sleeping at night. He says his feet ache so much, not just numbness. During the day he is able to tolerate the aching. He has been taking Vicodin at night the last two weeks to relieve the pain. At first he said it was helping, now not so much. Lorezapam used to keep him sleeping; now he is up to 2 mg and often wakes and takes more, but nothing really works well. The medical marijuana hasn't been a success either. He does nap a lot during the day, so he is getting sleep. I'm thankful for that.
I have noticed the last few days that Doug is starting to shuffle his feet when walking. He wasn't aware of that. Since I pointed that out to him, he is making an effort to pick up his feet.

We are having neighbors over for lunch tomorrow. We have wonderful friends and neighbors who are helpful. They show up to shovel our driveway when it snows, among other things. So we are looking forward to enjoying their company for lunch.

As this cancer fight wages slowly on, it would be easy to become discouraged. But when we stop to count our blessings, we realize how very much we are blessed. Our church is awesome, a place where people are the hands and feet of Jesus. Church is not a building, it is US.
Our faith upholds us; we know this world is NOT all there is. Because we accept Jesus as our Savior, we are assured of a place in heaven. In the midst of trouble, we can have His perfect Peace.

Love to all.

"Life is a gift, albeit unassembled. It comes in pieces, and sometimes it falls to pieces. Part A doesn't always fit with part B. The struggle is too great for the strength. Inevitably, something seems to be missing. The pieces of life don't fit. When they don't, take your problem to Jesus."    Max Lucado

Feeling Better

Doug is feeling better the last few days. He has his appetite back and is gaining some weight. He still tires easily but has more energy than the last few weeks. We have gone out to lunch and to church together, and have visited with friends, which is reason to celebrate. He still has the PN, especially in the right foot. He is now taking Lyrica to combat the PN. Too soon to know how effective it will be. At least the PN is milder than some have it. No shooting pains, but numbness in feet. Sleep is still a problem, but he is napping less during the day, so we hope for better sleep soon.

The myeloma panel that was done on January 30 shows rising light chains, probably due to being off velcade, but the light chains are still in the normal range, so that's great.

Today we went to Salida for Doug's eye exam, to get things in order so he can have cataract surgery. The ophthalmologist says Doug's glaucoma is worse, so he wants Doug to see a glaucoma specialist before the surgery. The plan is to insert some kind of shunt at the same time as the cataract surgery. Both the ophthalmologist and the glaucoma specialist travel from Pueblo once a month. We are very glad we don't have to travel to Denver for that!

We seem to spend a lot of time going to doctor appointments. So do lots of people as we all age and many have various ailments and diseases. We are thankful for good medical care and the ability to get where we need to go.

Love to all.

"May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ." 2 Thessalonians 3:5

Off All Chemo for One Month

Yesterday we went to Denver to see the myeloma specialist.
Doug has lost 17 pounds over two months, and his blood pressure was a bit low, probably due to dehydration.
Because of the side effects - fatigue, weight loss, peripheral neuropathy, and sleep problems, and generally feeling poorly, the specialist decided to temporarily halt all three chemo drugs for a month. He said "The CyBorD (drug combo) is working great, but it is  kicking your butt."

We have an appointment March 5; then the specialist will reevaluate Doug. He wants to keep Doug on treatment throughout 2015. The Lambda light chains are down, but he feels it is too soon to stop treatment. Once the PN has resolved and treatment can continue, his first choice would be to re-start Doug on the same drugs, at the same dose, but to change the frequency from every week to every other week. He hopes that would be well tolerated. The second choice would be to change drugs, possibly to pomalidomide.

Elusive sleep is a big problem. The specialist wants Doug to try amitriptyline at night. It was originally an anti-depressant but is used off label to treat some cases of nerve pain. During the day, Doug is able to tolerate the PN in his feet and notices primarily the numbness. His brain is distracted by daytime activities. At night the brain focuses on the PN, to the point where Doug says the blankets feel too heavy and his feet ache. Doug took his first amitriptyline last night and said it did not help at all. I think it might take a while, and the specialist said the dose might need to be increased. The doc said it is okay for Doug to take lorazepam (Ativan) for sleep but not the same night as amitriptyline.

We so appreciate Dr. M, the Denver myeloma specialist. He is caring, uses a lot of humor, and he is brilliant. He always has a plan and is encouraging. He goes to a lot of medical conferences to keep up with the latest findings. He says myeloma physicians are now dealing with more side effects as patients are living longer on newer drugs. He is very aware of the quality of life aspect.

The drive to and from Denver went well. I drove more distance than usual. My problem with highway driving is fighting to stay awake and alert on less busy stretches of road. I took a caffeine pill this time. I don't like coffee, and soda drinks cause extra potty stops (and there are not that many places to stop!), so the caffeine pill really helped me. I was able to drive two hours and not get sleepy. That is a huge improvement. So I drove the open highway, and Doug drove in the high traffic areas of Denver.

We are both looking forward to a month off the chemo drugs. Hopefully Doug will see a gradual improvement. Today we are both tired and resting up.

Love to all.

Fatigue finally lessening; PN still present

Doug has been off Velcade for 22 days and he still has the peripheral neuropathy in his feet. The whole month of January the fatigue has been steadily increasing. He has been sleeping when he can, and has done very little. Occasionally he musters up the energy to walk around the block.  He's glad we have Netflix so he can watch movies. On the days when he has felt up to it, he made me two shelves in his workshop, working a little at a time.

Yesterday was a turning point - the first day he felt a bit less fatigue! We went to Walmart; he went in to pick out a few things then returned to the car to wait while I did the shopping. That doesn't sound like much but it is progress. And he stayed awake most of the day. Today has been even better, and his appetite is picking up. 

The PN in Doug's feet remains. Numb toes and aching pain all over his feet. During the day he can distract himself but at night it really bothers him. He says the blanket is too heavy on his feet. The nurse practitioner at the Denver office started Doug on Lyrica for the PN on January 26, three days ago. It is a gradually escalating dose starting at 50 mg daily, up to a maximum dose of 100 mg TID (three times a day). Too early to say if it is working. 

The medical marijuana has been a disappointment so far. Since there has been no scientific research done, we had to experiment to find a dose that works without making him dizzy. Doug says he thinks the edible helps him get to sleep but only for a couple hours. Does not make him feel any better. His doc does not want him smoking it. I don't want the smell in the house either. Medical marijuana is available in many forms - oils, edibles, salves, etc. Doug tried the salve on his feet but says it did not help. Not sure if he used enough. 

The Colorado Board of Health has approved more than $8 million in grants to fund eight studies on medical marijuana. The research will be done at the University of Colorado Anschutz Medical campus and will examine the use of medical marijuana in treating pediatric epilepsy, post-traumatic stress disorder, Parkinson's disease and other conditions. I'm really happy to see some research being done. Some day in the future, maybe not in our lifetime, medical marijuana will evolve into valuable treatments. I'm not in favor of recreational marijuana however. Some of the edibles look just like candy, potentially dangerous to children. 

Tomorrow we go to Denver to see the myeloma specialist. We are hoping he will say Doug is in remission! We trust in the Lord always. 

"One of the main ways we move from abstract knowledge about God to a personal encounter with him as a living reality is through the furnace of affliction."     Tim Keller

Peripheral Neuropathy; Stop Velcade

Doug's  back pain comes and goes and is not the main concern. It must be arthritis.  It seems extra-strength tylenol helps.

The last few weeks have been difficult. Doug has increasing fatigue and is sleeping poorly. He is eating less than usual due to the GI unrest and has lost a few pounds.

Over the last two weeks, he has developed peripheral neuropathy in his feet. At first his toes just felt numb, then it gradually progressed to pain. Sometimes pain in his legs. So I emailed the nurse navigator in Denver. She checked with the oncologist and he said to stop velcade for now, until we see him January 30. Doug is to continue taking cytoxan and dexamethasone.

Doug is very tired of all this and is worn down. I am getting tired too. We both are very glad to stop the velcade. Doug is at the end of cycle 5. We think the end is in sight; sure hope so! His blood counts are down quite a bit but still within the limits for CyBorD. We know many people have worse side effects.

So far we have escaped the flu. We are so thankful for that, as our town has been hit hard.

Love to all.

The faithful love of the Lord never ends! His mercies never cease. Great is His faithfulness; His mercies begin afresh each morning. 
Lamentations 3:22-23