Day +14 -Some Results

It was still dark when we arrived. We had never noticed the lights on the sign before.

This morning we had a 7 am MRI so we hopped up and quickly dressed. Deb had a craving for some Chic-fil-a strips for her breakfast so we whipped in and got her 4 strips. She ate 2 and we put the box in our carry bags. Deb had an MRI of the sternum area where her persistent myeloma lesions are. After the MRI we headed up the fourth floor myeloma clinic to draw labs and see what was ahead for the day. You can't just poke holes in your bones and flesh without meeting certain healthy criteria.

 It wasn't long before our bone marrow appointment time was approaching and we had to make our way over to the Outpatient Clinic to find a full waiting room of patients and caregivers.
Because a surgical procedure is performed, paperwork and notification of possible downsides is given to patients before they are allowed to take painkillers.  We soon found our seats and joined in the chit-chat. There were so many patients today Deb had to wait well over an hour before she was called back. Since most of the patients take some pain killers, usually at least a Fentanyl lollipop. see http://en.wikipedia.org/wiki/Fentanyl   This article says 'Fentanyl is approximately 100 times more potent than morphine'. After being with Deb for 16 of these awful procedures I can assure you she feels great pain each time! In fact, the room full of people was discussing the pain involved. Our room was all repeat tests but if a first time patient had overheard the conversation, they would have run out!

An interesting topic was how many caregivers accompanied their patients. One other person besides me went in to comfort their patients. The discussion evolved around the pain and gross details. You will be spared! Even I have limits on my reporting ;)

As sometimes happens, a prisoner needed a procedure and was led in in handcuffs by 2 guards. It was so sad to see him already in a bad situation now going worse for him.

One gent had worked all night, come home to pick up his wife and bring her in. She had difficulties because she had entered the procedure with no painkillers by choice. She thought she could 'tough it out.' Well, she couldn't! So it took a long time to complete her test. Her husband was waiting with us and fighting sleep. He had not had anything to eat all night so we offered him the only thing we had with us...those 2 leftover chicken strips! He was extremely grateful. When his wife finally completed her procedure she was sent off for another procedure which would end just in time for him to return to work...with no more food or sleep! We have it so good!

Deb's turn finally came and we were led back to the small cramped room, about 10 feet square, with three techs we had used before and liked, computers, an elevating bed, and lots of medical supplies. I always slide my chair up close to Deb so I can stroke her head or foot depending on which side the procedure is being performed on. They try to alternate sides. The procedure is preformed in the small dimple of one's lower rear waist. They are very careful to find and mark the sweet spot.

Soon Deb was given pain killer shots, sliced, and the T-handle tool began boring into Deb's pelvic bone. The three techs, one of whom was an RN, were somewhat concerned about the medical doctor's order for the test. It was unusual and they had requested a supervisor to call for clarification before they got too far along. They called three different persons in the myeloma clinic and finally all three agreed that although unusual, they would get the specified samples. After about 20 minutes the procedure was completed, Deb was bandaged with a large pressure bandage, and she was allowed to begin getting dressed and helped off the table. A knock came at the door and the supervisor entered, visibly upset. He said that another order had come in requiring a completely new bone marrow procedure. The samples just drawn were for an additional test. He apologized profusely and told Deb she could refuse if she wanted to. After a call to our APN confirming that the supervisor was correct, Deb consented to do a second bone marrow immediately. They were beside themselves over this but tenderly started over. Of course, with the crowded room full of patients this pushed back their day considerably.

Finally, the second procedure was completed, Deb was re-bandaged, and dressed. The staff was still upset at what they had to do to Deb. She thanked them and encouraged them. It would be hard to work every day doing something to people that hurts so much and to be cursed at, etc, but we are grateful that the staff is willing to do it anyway.

To ensure that the bleeding is stopped, after each bone marrow, the patient has to sit in a straight-back chair with a rolled towel between the chair and their wound in order to apply pressure and stop bleeding.

Susann updates Deb with the latest lab results

After our time was up, I helped Deb back over to the myeloma clinic for more labs and a unit of blood. Her earlier labs had indicated that her blood needed reinforcing for Friday's planned infusion of stem cells-Deb's third. We are all for that! Soon Deb was resettled into our private treatment room and care began again. As soon as the labs were drawn Susann, Dr van Rhee's lab director came downstairs and picked them up. She gave us a very favorable report as to how the killer cells were doing inside Deb's body.

Sharon tenderly cares for Deb

Since Deb was having such a wonderful day, I left and went to her favorite nearby kitchen and brought back some soup and bread for her which she enjoyed immensely. When our day in clinic was finally over we headed back to the condo and Deb settled into bed to sleep off beaucoup drugs. Finally, about supper time she got up for a while. I went to my favorite cafeteria-Franke's- and had supper for myself and brought back some veggies for Deb.

I love hot food and also take advantage of little trips like that to relax and clear my mind of the day's responsibilities. I was sitting there listening to the quiet melodious music and watching the hungry hoard of mostly senior citizens coming for their often one good meal of the day and being grateful for the ministry of food the cafeteria folks have.  A very old couple was next to me and began discussing the quality of food. The old gent made a statement that almost sent me to the floor. He told the Mrs, that he especially enjoyed eating there because they had none of that canned music so he could eat his meal in quietness.  Same place, different takes on it!

After I brought Deb's food back to her we were watching some news and the phone rang. It was APN Kristen with the latest report on labs. The MRI showed the breastbone area lesion and soft tissue had shrunk since the baseline MRI of Sept. Kristen also reported that Susann had determined that the Natural Killer cells were very active! We are so delighted!

Deb said, 'let's pray!' She thanked the Lord for the good news !

We are so grateful for all the faithful angels who serve us every day actively and behind the scenes. For every doctor or nurse, there is a host of invisible administrators, lab techs, finance, janitors, cooks, computer techs, supply clerks, etc all serving just as faithfully, but out of sight. We thank each one and pray blessings on you!

While in  the bathroom tonight, Deb fell to the floor after tripping on a throw rug. It went in the trash immediately and Deb seems OK. We have infusers and I just changed out 2 and flushed the lines.  It's about 9 pm and Deb has a slight fever. Two Tylenol and a notation on our bedside record.I  had to change the bandage where the skin biopsy was also.

Tomorrow? Morning labs, then the third infusion of stem cells.

Exciting days!

Blessings!

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Several days ago some classmates came by for a visit and we had to turn you aside due to the APN's arrival. Sorry we missed you! Come back soon!

White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9