Rough Night

Last night was really rough. At 6 pm Doug said his pain level was a 10. He took his first dose of Oxycontin, the newly prescribed pain med.

He laid down at 9 pm - by 10 pm he was feeling very uncomfortable - clammy, dizzy, feeling "disconnected", slight nausea, anxiety, did not feel he could lie flat. I propped him up on pillows and he dozed on and off but neither of us got much sleep. At 4 am he said to me "Call the squad" -- I checked him and decided that was coming from the anxiety - I did not call the squad, but reassured him he would be okay and he was feeling side effects, nothing more. At 8 am when the oncology dept opened, we went over to have his blood pressure checked and talked to the nurse. His BP was okay by then and he was feeling much better. Susan, the nurse, reafirmed that what he was experiencing was side effects, but she was surprised that one dose did that. She said he should go back to just taking the oxycodone for now.
Tomorrow is the day Dr. Hardenbergh will see Doug. Susan said they would come up with some other pain med to try. They really want him on some form of long-acting pain med and I agree. I've been nagging at him to take his pain med on a regular schedule before the pain gets too bad but he still waits too long. Stubborn men!

Doug is dozing now. I am waiting for Susan to call me back, as Doug wants something for nausea so he can eat.

I'm really tired and close to tears but holding together. I know God is good and He will provide.

Jack's Place

My clever friend Barb suggested that we could post photos by inserting the camera SD card directly into the slot on the computer. (Remember that we forgot to bring the cable that connects camera to computer.) So now I can show you some photos of where we are staying.

Jack's Place is right across the parking lot from Shaw Cancer Center in Edwards CO. Jack's has 12 private patient rooms and several communal shared spaces. Jack's has a "pay-as-you-are-able" philosophy -- suggested fee is $25 a day (for rooms that would cost around $300 a day in this area), but no one is ever turned away.

Each room has a private bathroom, tv/dvd player, small table and two chairs and a small refrigerator for drinks.

Here is the dining and sitting area. There are several tables. Eating in rooms is not allowed.

This is the kitchen we all share. We pick a section of one of two fridges to store our food; there is freezer space too. On the opposite wall are 12 cupboards - one for each room, to store other food items. We have two microwaves, two dishwashers, coffee maker, plus gas stove and oven. Dishes, pots and pans are supplied. We all clean up after ourselves.

Here is the downstairs game room with big screen tv and fireplace.

This is our library - lots of good books as well as audiobooks. I am currently reading a book I found here: The Art of Racing in the Rain by Garth Stein. Wonderful book! The library also has a computer and printer that we can use.

The sunroom faces southwest - a nice spot to sit in the morning. There is an outside patio through french doors from the sunroom.

I didn't get a picture of the laundry room that has two washers and four dryers.

If we can't be home, Jack's Place is a fine place to be. But we would much rather be home.

New Pain Med

This afternoon the pharmacy called - all the insurance requirements have been met and they could fill the prescription for Oxycontin. So we went and picked it up at 3:30. Even with the insurance kicking in, it was $80 for our co-pay. It is Oxycontin 20 mg. Sure hope it works. Mornings are the best time for Doug; after laying quietly in bed he doesn't have much pain. At 6:00 pm Doug said his pain level was a 10 out of 10. The Oxycontin is a time-release tablet, so he only has to take it every 12 hours. He has also started on Miralax since the pain meds have a constipating effect.

Doug has been doing all the driving since we got here. He loves driving and doesn't like to be in the passenger seat. But this new pain med could make him too drowsy to drive - I'd better get familiar with these roads. We are very close to I-70 (its right outside our window) but we've been using Hwy 6 to get to Avon from Edwards. There are almost no normal intersections here; it's all roundabouts. It can be confusing to find the right road.

Late this afternoon one of the Pet Partner teams showed up in the commons area. Korsack is an Italian Greyhound and her partner is Jeanne. Korsack curled up in Doug's lap after making the rounds to meet everyone. Dogs have such a peaceful calming influence.

Gratitudes and Pet Partners

It is a sunny morning here in Edwards CO. Doug had his second radiation treatment this morning, and this time the therapists invited me back to watch. This was a special perk because I am a retired radiation therapist. Their machine and computer system is exactly like what I used to work with. I almost felt like I was back at work. The patient area is welcoming and nicely decorated - including three large lovely bronze sculptures, no doubt donated.

Jack's Place, our temporary residence, has a visiting therapy dog program. The dogs are registered with the Delta Society Pet Partners. I had a wonderful Rottweiler, Leonard, who was also a DS Pet Partner! I know the dedication and extensive training and testing these teams undergo. Leonard and I worked mostly with kids - he was a wonderful Reading Dog. We volunteered at our local library back in Nebraska; Leonard was the first dog in the Paws for Books program. Leonard loved everyone. Sadly he died in 2008 but there are many happy memories.

We got to meet one of the Pet Parner teams here. Gracie is a JRT who is happy and friendly. Doug has requested another visit from Gracie and her mom.

I got to thinking this morning how blessed I am. Following are some gratitudes, in no particular order:

A husband who prays
I am a beloved child of God

So many people who keep us in their prayers

My husband who never complains even when he is in pain
Jack’s Place where we can stay during radiation treatment

Our son who is an excellent father to our grandchildren
Our wonderful daughter in law
My loving sister and brother in law
Our trusty little car
Living in Buena Vista CO
Our church family
Good neighbors
I am retired so I don’t have to split my time between work and Doug
The caring people at the boarding kennel
The Lord who keeps me strong
Five healthy grandkids
Dogs and their unconditional love
My Bible
Bible studies
Thrift stores

Clean clothes

Opportunities to help others
Books

I'm sure I could go on and on, but these will do for now.

Love to all.

First Radiation Treatment

We went out this morning to pick up a few things we had not brought with us. We drove around Edwards and Avon to familiarize ourselves with the area. Doug waited in the car while I shopped.

The oncology nurse, Sue, called in the early afternoon to say that Dr. Hardenbergh had written a new prescription for pain meds and gave us a time to pick it up at the dept. and talk to her. She said she didn't think they had things ready for Doug's treatment yet. We came back to our room to relax and an hour later we got a call -- Doug would get his first treatment at 5:15. Good! We appreciate Dr. H. getting the ball rolling and not waiting until tomorrow. Two people had to stay overtime but they are professionals and it comes with the territory. Good people.

After the treatment it was dark out, but we wanted to fill the script. So off we went to City Market pharmacy. We didn't get it filled. The script was for Oxycontin, a high strength time-release form of Oxycodone. The pharmacist said the insurance company requires pre-approval for this drug. The physician needs to send forms to the insurance and even then there is a possibility they could deny it. Of course we could pay for it out of pocket -- to the tune of $260. For now Doug will continue with the Oxycodone and he can double up on it if he needs to. And the nurse convinced him to take it on a regular schedule - and not to wait until he hurts. (I had already told him that -- grrgh.)

We have met several other people who are staying here at Jack's Place. One guy is almost finished with his course of treatment - after five weeks. I'm glad we won't need to stay that long. Looks like Doug's last treatment will be Monday the 21st.

Thanks for all the helpful comments, encouragements and prayers! God is good. We are blessed.

Do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10

Radiation Therapy

Today has been busy. We left home at 7:30 to take Chester to the boarding kennel. Mike, one of the owners, was there and he remembered us from the previous time we had to leave Chester and Piper for two months, when Doug went through the transplant. Mike said that since we were leaving Chester for medical reasons again, he would only charge us $10 a day. And he said we shouldn't worry about how long we needed to be gone; although they were booked solid over Thanksgiving, they would put Chester up front in the office if need be. This is an answer to prayer right there. This is WagnTails kennel in Salida -- Mike and Patty Bondurant are wonderful people.

We had good driving conditions to Shaw Cancer Center. We got here in plenty of time to get checked in to our 'home away from home', Jack's Place. It is just across a parking lot from the cancer center. We have a nice hotel-like room. Jack's has a community kitchen and dining area. Everyone brings their own food - we have a cupboard just for us and use of a refrigerator. I have taken photos, but we forgot to bring the cable that connects the camera to the computer!

At 1:15, we had the consult with Dr. Patricia Hardenbergh, the radiation oncologist. She showed us the CT scan from Oct. 31; we could see quite a few "holes" in Doug's left hip and pelvis. No wonder he hurts! She is going to radiate the whole left side and part of the femur. Doug will have ten treatments.
If there is any good side to MM, it is the sensitivity to radiation. The downside is - radiation to this disease is only palliative -- used to control pain and stop further bone erosion in the treated area, not to achieve a cure. MM affects the whole body and radiation is a local treatment. Whole body radiation would be lethal. Radiation therapy can cure cancers that are localized.

I am a retired radiation therapist -- I used to give radiation treatments. Now I am on the other side.

Dr. H. also showed us the plain x-ray of Doug's pelvis taken Oct 19. The radiologist who read that film reported it as negative - meaning nothing found. However, when Dr. H. showed us, she pointed out several suspicious areas. Even Doug and I could see. Doctors almost never criticize each other, but Dr. H. did admit that it was "under-read".  That is troubling; how many other things have been missed by that radiologist? If he (or she) had been more competent, Doug might have been spared the additional week of pain, but the end result would still be the same. It makes me mad, but Doug says he won't let it upset him.

After the consult, we came back 'home' to rest, then back to the radiation dept.  for simulation. This the time of mapping out the area on Doug's body; done with a CT scanner. This information is then entered into the treatment planning computer by the dosimetrist to explore the various ways the radiation beam can be configured to minimize hitting organs in the area. Then the doc - the radiation oncologist - looks at the plans and chooses which one to use.
Radiation oncology is really a team effort -- the secretary, the nurse, radiation therapists who position the patient and operate the treatment machine, dosimetrist who does the treatment planning, and the radiation oncologist (physician). Plus the radiation physicist who calibrates the  machines.
A large part of Doug's pelvis is involved, so some bowel will get radiated. It shouldn't cause him any major side effects; maybe a little diarrhea, or if lucky, maybe not.

I asked Dr. Hardenbergh about the "Light Chain Disease" label. She said "it is still multiple myeloma." She said it could be considered a 'mutation', since the usual marker for myeloma still comes back as 'no evidence of myeloma'.  I looked back at my old notebooks and back in April 2010, at the one year post transplant visit --  Dr. Jeff Matous, the transplant doc (and our hero), reported "Light chain looks good". I recorded the Lamba light chain as 11 at that time with the comment 'excellent'.
I looked back at the most recent lab report of 10-6-11. The light chain is on page four, not highlighted, and was 47.3! I then looked back at the lab report of 7-5-11, and it lists the lambda light chain as 41.3. There was obviously an upward trend. Why was this not noticed? This pisses me off. I plan to ask some questions when we see the medical oncologist - not to accuse so much as to maybe help someone in the future.
Doug has such a marvelous attitude so I need to control myself. But if the light chain rise had been noticed earlier, we could have started back on chemo sooner.

Tomorrow we hope to get the first radiation treatment, if the team gets everything ready by then. We are both exhausted. Because of all the walking to and from today, I got a wheelchair for Doug. The fact that he actually rode in it tells you how much he hurts, even with the pain meds.

We are bouyed up by all the prayers being said for us.

Love to all.

Heading for Radiation

We did not go to the orthopedic consult. Dr. Myers called to tell us that he had spoken with Dr. Hunter. Hunter looked at the CT scan and said there was nothing he needed to do -- that Doug should go directly for Radiation Therapy. So early Monday morning, we will take Chester to the boarding kennel and head to the Shaw Cancer Center.