Tuesday, January 31, 2012

First Appt with Dr. Asad

We met Dr. Asad on Friday and he was quite a small man, a little shorter than me (in high heeled black cowboy boots) and looked like he was in his thirties.  He said that he had gone to a Multiple Myeloma conference the night before and talked to the presenter from California.  He asked him who his youngest MM patient was and told them he "had them beat" with Tanner.  He said that they were interested in his case and would be available for assistance in the future if needed.

He assured us that Tanner's lab work indicated no active Multiple Myeloma at all and I told him that was good to hear but I also explained to him that when Tanner was first diagnosed in 2009, Dr. Daniels at Cook's Hematology told me that if they were just looking at Tanner's lab work, there was nothing there to indicate cancer at all - and that the PA in Arkansas told me that they didn't track Tanner solely by labwork - that they also needed to track the lesions (which is why they had to fight with the insurance company about the need for MRI's and PET Scans so often). Dr. Asad said that he would check with Dr. Berryman in Dallas and see what he recommended but that he felt sure if anything in Tanner's case was changing, it would show up in his blood work that's being taken every week.

He did mention that Tanner's platelet count has been coming down for the last three weeks and that if it continues on a downward spiral, they would need to change his treatment by either lowering the dosage of Velcade and Revlimid - or possibly doing chemo every two weeks instead of every week.  Tanner told him he liked the idea of going to treatment every two weeks.

Think about it, Tanner has been having chemo since August, 2009!  For six months he had it daily (except for a couple of two week breaks) and then every week for the last two years.  How long can you pump poison into someone's body and they not have a reaction? He's done unbelievably well - which is why the doctors say the don't know how long he will be on chemo... Being so young, he's in "uncharted territory".

He started a "job" selling air purification systems and did his first presentation with me so that he could practice. I guess I was a little "negative" when he first told me about it because I told him that it was going to be almost impossible to make such a job work out... that many people try and fail at these sorts of things.  I had to call him later and tell him that I was sorry for not being more positive, and that I just knew it was something I, personally, could never do because of my shyness and fear of speaking in front of others.

He came over Saturday afternoon and did the presentation and he was pretty rough - but I was so proud of him. He's almost fearless. He'll get out there and try anything - and he sold a system over the weekend!!  If nothing else, it will be a good learning experience for him and will be a job he can list on his resume.

I had a rough time this last weekend.  Sometimes I can't control how emotional I become and Saturday I was a basket case.  I texted Trevor and Tanner and let them know, and then I just turned off my phones and shut down my computer - and "unplugged" for a while.  I slept on the couch and watched the Food Network and read and was just on my own and out of touch for a while.  I needed some ALONE time with no beeps or rings... some time to think and reflect - and rest.

Today was a better day, and that's a good thing.  I'm tired, deep down to my soul, and ready for better days.

We do not live an equal life, but one of contrasts and patchwork; now a little joy, then a sorrow, now a sin, then a generous or brave action...Ralph Waldo Emerson

Tuesday, January 24, 2012

Mr. Walker

I took Tanner to Texas Oncology last Friday for his 12:30 p.m. appointment for labs and chemo and the receptionist told him that they had him down for a 2:00 p.m. appointment.  I told her, "No, huh uh. Not this time, his appointment is at 12:30" and explained that I had the appointment card myself. This is the second week in a row that we've gotten there and they've told Tanner that his appointment was at a different time than he was told. She asked me if I had the appointment card to prove what time we were told and I ended up calling work and having one of the ladies take a picture of the card. The receptionist took it back to triage and they went ahead and took Tanner back for his chemo.  We ended up being there for about 1-1/2 hours.  I guess we'll keep the appointment cards with us when we go to the appointments since they seem to have a hard time keeping track of the actual times.

Other than the issues over the appointment times for his first two visits, he seems to like going to the new Oncology Center.  They came to the doors and called out for "Mr. Walker" and Tanner went back by himself.  When he came out he was laughing and said that they called "Mr. Walker" back behind the curtains and him and an older man both went.  He told the older man he could have the chair and when the nurse came in she asked the old man where he wanted his shot and the guy started pulling his pants down.  Tanner told her he wanted his in the stomach and she said "Wait a minute. You two aren't together?" Come to find out they were both Robert Walker and were both having chemo on the same day. Tanner said he was glad that the man had on his "tighty-whities". LOL!

He stepped on and broke the screen of his cell phone last week so we've been out of touch for most of the weekend.  Sunday is the first day that I can ever remember that we haven't communicated with each other at all.  He came over last night to get his replacement phone and he and Cearra both seem to be really happy. She's loving cosmotology school - Tanner's loving her - and not living at home (it seems). He was telling me that he got a job with Cearra's sister and that it's selling some kind of air cleaner and humidity systems in people's houses. I was trying to tell him how nearly impossible those types of jobs are but he was going on and on about how they pay you a salary even if you don't sell anything. I figure, if nothing else, it will be a good learning experience for him - and maybe something he can put on a resume later.  Most times, they just have to learn on their own.  At least he's outgoing and not as introverted as his mother. I would have never even considered such a job in a million years.

Monday he's scheduled for his bone survey and we are both anxious to see the results since he hasn't had one perfomed since he was first diagnosed in August, 2009.  At that time he had hundreds of lesions all throughout his body. His whole skeletal frame lit up nearly all black. It will be interesting to see how he looks after 2-1/2 years of chemo.  Hopefully, it will look much clearer than the original scans taken when they first discovered the cancer.

Myself, I'm hanging in there.  It's an adjustment being on my own.  Some days I'm okay, and some days I'm not. Some days I realize the benefits - and some days I struggle deciding which way my future needs to head...

Time doesn't always heal; it just breathes and swallows memories like the seasons change - sending showers; beating flowers into the mud. And nothing is forever in this place. Nothing but the way my heart fits into your hands; the held breath of hope.

Wednesday, January 18, 2012

A Journey

The beginning
A Day of Tests - With Dad and Janet
With Dr. Barlogie - A Hero

Ready to Start
Chemo and Collection



Long Days
Even More Chemo

Deep Thoughts

Stem Cell Transplant

So Sick

A Better Day with Granny


Returning to "Normal"

Make A Wish

Monday, January 16, 2012

A Close Call

Friday was Tanner’s first visit with Dr. Asad at Texas Oncology and he told me the appointment was at 3 p.m.  We arrived and the receptionist told us his appointment was actually at 1 p.m. and that Dr. Asad had already left for the day. Tanner said he could have sworn they told him 3 and that was what he had written down.
Fortunately, the receptionist talked to Brian, the PA, and they had already obtained his chemo medications and decided to go ahead and see him.

The PA is a very nice, (very tall), man who sat and talked with us for quite a while. Of course, they expressed their amazement about the fact that Tanner has Multiple Myeloma at such a young age and Brian also told us that he was surprised that he was still on “full strength” chemo after two years.  He said that most patients are on a “reduced maintenance dose” but that Tanner is still taking full strength Velcade and Revlimid.

Tanner told him that he was, “like an experiment” and Brian responded that yes, he was in fact “truly an experiment” and that at there are no written protocols or standard of treatment for someone his age with Multiple Myeloma.  He expressed curiosity about how long “they” planned on keeping Tanner on maintenance, and we told him Dr. Berryman told us that since Tanner was “tolerating chemo so well” the plans for continued treatments are “indefinite” at this time. 

Brian also asked when the last time Tanner had undergone a skeletal survey - and looking through the records, only found the one taken in 2009 when he was first diagnosed.  He recommended that  another survey be taken in the near future.  Tanner and I both will be anxious to see the difference in this full body x-ray versus the one taken in 2009 where they first found the “innumerable” lesions in the bones all throughout Tanner’s body.

The appointment flowed well and it was so quiet - and we were in and out within two hours!  If the weekly visits continue like the first one did, Tanner will appreciate the difference in being seen in an adult practice versus the children’s practice (which, more times than not, was usually quite loud and chaotic with all the children).

So, all in all, we were both impressed with Texas Oncology and look forward to actually meeting Dr. Asad.  Next week’s appointment is on Friday and will be for just labwork and chemo and then the next Friday, (1/27/2012) he will finally see Dr. Asad.

Yesterday evening we had some “family time” and I took the boys and Cearra out to eat and to the movies to see Sherlock Holmes.  It was a nice evening and the boys (and Cearra) all seemed very happy.

Before I went to bed last night I saw on Facebook that my Aunt Tincey in Arkansas was in a bad auto accident but came through with only cuts and bruises.  I called up there and talked to her daughter, Julie, and was told that my aunt was on the way to Paris to see her brother and had made it as far as Texarkana when another car cut her off.    Aunt Tincey was doing near 70 and when she slammed on the brakes and swerved, she lost control of her SUV and it flipped two or three times before it came to a stop and the vehicle was totaled.

Julie said when they made it to the hospital, the doctor told them that Aunt Tincey could go on home if she desired but that she “would hurt in places where she didn’t know she could hurt”.

I kept thinking about her when I was trying to go to sleep last night and this feeling of fear came over me.  Aunt Tincey called me a few days ago and left a message and I had been too “busy” to call her back.  Then in the blink of an eye, we could have lost her.  I thought about how she must have felt in those moments when her SUV was flipping over and I became so afraid of how close we came to losing her yesterday.  She was SO good to me and Tanner those six months we lived in Arkansas, but even more than that, she's played such a vital role in my whole life. I love her so much... Sleep was a long time coming…

You never know what each day is going to bring and we (I) all get so bogged down in the negatives.  That needs to stop.  We have to stop and appreciate what we have every day.  We have to let those that we love know how much they mean to us.  We need to stop waiting. What if we don’t have tomorrow?

Monday, January 9, 2012

All's Calm

All seems to be calm on the homefront (knock on wood).

Tanner came into work with me on Friday and Monday (and came to my house on Saturday and Sunday) helping us out with putting inserts in - and labels on - our company newsletters.  Today he's had to stay all day so he's gotten a taste of what it's like to work a full day.

I've heard him sigh fairly loudly and few times, and stand to stretch his back, so I know he's probably pretty worn out.  There's something about processing the newsletters that's really hard on your back.

I went in there earlier and he asked me if we had the heat on and said that he was sweating - but felt cold.  I felt of his forehead and he was really warm and clammy and he says that he's nauseated and won't eat his lunch.  I know there's a stomach virus going around so I'm hoping that he's not about to get sick.

Things seem to be going well with him living with Cearra and her mom.  I've seen him every day this weekend and they both seem really happy and content.  Cearra has started Ogle School and told me that she performed her first haircut the other day and that her teacher told her she did really well.  She says that she loves it there! 

Tanner asked me what I thought of him going down there and talking to them about attending classes himself.  He said he's always been good at cutting hair - and often helps Cearra with coloring her hair.  I told him that I had no problem with him attending beauty school at all but that my biggest concern was that most salons don't have insurance and that's why I've tried to steer him towards industries that (usually) provide some benefits (like computer technology).

At this point, any school that he can settle on will be okay with me.  He's going to be 20 in April and needs to get serious about what kind of career he wants to pursue.

He and Cearra went to look at wedding chapels the other day so I'm beginning to believe this engagement might not be as long as I thought it was going to be.  They've had each other's names tattooed on their bodies (Something I told them they would regret one of these days) so I guess they might as well go ahead and get married...   As I said, they seem very happy together at this point.

I had my four year old granddaughter, Kayleigh, over to stay with me this past weekend and it went so well!  She hasn't stayed with me since she was about a year old (she lives in Brownwood with her mom) so I wasn't sure how well it would go.  We had a lot of fun!!  We went for several walks, went to play with her 4 year old cousin Eva, went to the park, and played in the children's playgound at Chic-Fil-A (where Kayleigh was kicked in the face and ended up with a bloody nose).

It was a good, fairly stress free, weekend.... One that I needed.

This coming Friday Tanner goes to see the new doctor at Texas Oncology.  I'm looking forward to meeting Dr. Asad and see what he has to say about Tanner's treatment - though in reality I don't think anything is going to change except the location since he's going to be taking direction from Dr. Berryman in Dallas - just like Dr. Albritton did for the last couple of years.

I guess if Tanner is serious about getting married, he should be going to an adult Oncologist instead of a children's practice!

We are not the same persons this year as last; nor are those we love. It is a happy chance that we, changing, continue to love a changed person... William Sumerset Maugham

Tuesday, January 3, 2012

Settling Into A New Year

Well here we are at the beginning of a fresh new year.  So many possibilities for decisions and directions...

Tanner is still living with Cearra's family and I spent some time with him last Thursday when i took him to his last appointment at Cook's Oncology.  I asked him how things were going and he paused, looked at me, and said that he didn't want to say that things were "better".  I asked, "You mean things are easier?"  His response was "Yes."

I know what he meant.  He doesn't have to answer to me anymore.  At least not to the point that he was having to answer while living in my home.  We've spoken or texted every day since he's left because I have to hear from each of my boys on a daily basis.  I just have to know that they are ok.  But what I've found as the days have passed is that I'm starting to relax too.  It's beginning to become "easier" for me as time goes by. 

I don't have to deal with so many young people coming and going from my home at all hours.  I don't have to wake up during the night and go searching through the house to see if he's home - and then lie awake listening for him to return.  I can sit in the living room and watch a movie and don't have to hide out in my bedroom.  I've found that, while I still worry about him, it's not a constant presence in my life.  Now I understand what my mom meant when she told me, "Sometimes it's easier not knowing."  As long as I hear from both boys at least once a day, I find that I'm doing ok.  I've told him that I am still always, always there for him when it comes to his health, appointments, and school.

We met with Dr. Albritton on Thursday and said our goodbyes and he had his last chemo treatment in their clinic.  Tanner will be seen by a Dr. Dean Asad at Texas Oncology in the Fort Worth Medical District starting this week - and will remain under the supervision of Dr. Berryman over in Dallas.

I was talking with a friend the other day and he was asking about Tanner's relationship with Cearra and I told him they are just completely crazy about each other - and while I worry about them being so much in love at such a young age, Tanner needs to be allowed the room to experience these feelings.  We don't know what his future is going to hold and I want him to have as many positive life experiences as he can. 

Dr. Albritton had her final talk with Tanner and told him how she understand that many young adults with cancer try to live life to the fullest.  She explained that they seem to often have a "what do I have to lose" attitude and that she wants him to try and always stop and think of consequences. She told him to remember there are many high adrenalin activities he can participate in that can add excitement to his life - and are still "good decisions".  That's one of the things I will miss the most about Dr. A, she has dedicated her practice to the young adults who are so often overlooked. She came to the waiting room and sat and talked with me for a while and told me that she thought Tanner was okay living away from home and that I needed to focus on getting myself strong because, as she said, "With Multiple Myeloma, he's going to need you one of these days, and then he's going to need you again."  Both of us need to live our lives to the fullest for as long as we can. 

I'm thinking of going ahead and putting my house on the market.  It's a three bedroom on a half acre lot and I really don't want to have to keep maintaining a large yard - and even the upkeep on a house can become overwhelming.  I think it's time to let go and move into a small apartment. I just need to do a few things to the house before I can list it for sale.

Friday afternoon when I came home from work, my front door was unlocked, Tanner's bedroom door was open, and the hall light was on.  My thinking was that he had come home during the day and picked up some more of his things.  I looked around and didn't notice anything out of place so I locked up and went to run my errands.  I checked in with Tanner to remind him that he always needs to lock the front door and he told me he hadn't been to my house.  I called Trevor and he too told me he hadn't been by (and he doesn't have a key).  I thought that surely I didn't go off for work that morning and left my door unlocked and the lights on and bedroom door open.  When I got back to the house I looked around and noticed that half the movies on the rack by the front door were gone. 

The only thing I can think is that someone that Tanner knows knew where he used to hide his key and possibly had a spare key made. None of the windows were broken and there was no sign of forced entry so, needless to say, I became concerned about who out there might have a key to my home.  I've slept on the couch through the weekend so I could hear if anyone should try to come through the door and last night one of my cousins came over and changed the locks.

I think it's time to move on.  Like I said, it's a new year with lots of decisions and directions...

Contemplation often makes life miserable. We should act more, think less, and stop watching ourselves live... Chamfort