Monday, May 28, 2012

Struggling A Little

So... Tanner has been struggling for a few weeks now...

We went out to eat Saturday evening with Granny Jane and Pop Jerry and he could only get down a few bites of his food - and he ended up in tears.  Granny could hardly stand it and was asking him what was wrong... feeling to see if he had fever... asking if he's been eating... and you could tell she just wanted to "fix" what was wrong with him. The thing is, there's nothing we can all really do but support and love him, try to take care of him to the best of our ability, and pursue some help from the doctors.  He finally admitted to her that he is "worried"...

I can only imagine what it's like to be twenty years old and have Multiple Myeloma... To have bones that ache on a daily basis. To have the specter of dealing with this for the rest of his life.

I can't help but feel that a large part of what is happening to Tanner (back pain, arm and leg muscle spasms, and nausea) are side effects of the chemo treatment that he's been receiving for three years now.  When he was in Arkansas, Dr. Barlogie would give him "chemo breaks" every once in a while - whether it was a few days or, occasionally, a couple of weeks.  Since he's been under the supervision of Texas Oncology (and not MIRT), he hasn't had any kind of break in well over a year now...

I reached out to him yesterday to see if he was feeling any better and he told me "not really"... His body hurts, he's nauseous, and he's worried...  Today he texted me that his collarbone is feeling "weird" and he wanted to know when his next appointment with Dr. Gilbert (the Orthopedic Surgeon who put the rod in this left tibia and his right hip) is and I told him that it's tomorrow afternoon. He said, "Good, I have some questions for him".  In addition to that appointment, he sees Dr. Dean at the Fort Worth Texas Oncology this coming Friday - and then Dr. Berryman in Dallas the next Wednesday.  We both have some questions for all of these doctors.

After going out Saturday evening and sitting across the table from him and observing as he tried to get down a few bites of food - and then watching as he finally just sat there next to his Granny and cried... my heart just aches.

Like Granny, I want to "fix" him... to take the hurt... the worry... away...

I came home and crawled into bed and the thoughts just swirled around and around in my head... and sleep was almost non-existent... 

The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him...Pablo Casals

Wednesday, May 23, 2012

Side Effects

I kept trying to contact Tanner yesterday and finally ended up texting Cearra's mom last night and asked what was up.  Tanner knows that I need to hear from him by afternoon each day or the mom panic starts to set in (this is a side effect of not only the cancer - but years of raising young boys).

She replied that he'd been sick in bed most of the day and she would have him contact me.  He texted that he was vomiting stomach acid and had spent the majority of the day in bed. We went back and forth about taking his nausea medicine and then he said that he's experiencing muscle spasms in his arms and legs now.

I'm beginning to believe that the majority of Tanner's pains are a side effect of the chemo medications that he's been on for three years now.  I Googled velcade today and muscle spasms, back pain, and pain in the extremeties are common side effects (not to mention the nausea).

Tanner has chemo this Friday, an appointment with the Orthopedic Surgeon who did the surgeries on his legs next Tuesday, an appointment with Dr. Asad Dean (the Fort Worth Oncologist) Friday June 1st, and then his monthly appointment with Dr. Berryman in Dallas on Wednesday June 6th. 

Hopefully, between all these physicians, someone will have some suggestions about how to get his discomfort under control.

Up to this point, no one has responded to any of my messages...  Discouraging, to say the least.  So, my plans are to have this addressed by next week.  I'm actually really looking forward to seeing Dr. Gilbert on Tuesday (even though he's all the way on the other side of Dallas and that drive is NO fun). I'm hoping he can give us some insight about Tanner's back.

I'm afraid all these years of chemo are beginning to catch up with Tanner's body.

Last night, I was going through the closet moving stuff around preparing a space to put some shelves in there and ended up sitting on the floor going through the boy's photo albums.  I was looking at their sweet faces and considering all the twists and turns our lives have taken.  I looked at the innocent smile on Tanner's face on so many of the photos and couldn't help but think none of us had any idea what life had in store..

If we can get Tanner's pain and discomfort addressed, things seem to be going well for everyone right now.  He's still very much in love with Cearra - and she with him, Trevor seems to be finding some mental peace, and my life is going well.  I've been able to just settle down for the last couple of months and live in the happiness of the moments... to put aside worry of the future... of the "what if's" and just live for now. I've gained a level of contentment I haven't felt in a long time. I'll face tomorrow... tomorrow... Today is good.

I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - HOPE always triumphs over experience - laughter is the cure for grief - and love is stronger than death... Robert Fulghum

Friday, May 18, 2012

Treatment Evolution

I still haven't heard back from any of the doctors... so still no pain management... I actually think I'm going to reach out to Dr. Albritton (from Cook Childrens) today and ask her if she has any suggestions.  She told me to let her know if there was ever anything she could do for us. Hopefully she knows of some back doctors who take Medicaid here in the Fort Worth area.

Tanner is hanging in there and, other than the back spasms, seems to be doing well... Still very much in love with Cearra and just living life.

I receive the MMRF newsletter and thought I would share a couple of the abstracts from the one I received this past week:

Novel therapeutics in multiple myeloma:
Most myeloma patients still experience recurrent relapse and eventually become resistant and/or intolerant of effective agents such as corticosteroids, alkylating agents, immune modulators (lenalidomide and thalidomide) or proteasome inhibitors such as bortezomib. Once this happens average survivals are less than one year. Progress has been made for such patients, however, with the demonstration of clinical benefit of novel proteasome inhibitors (carfilzomib) and immune modulators (pomalidomide). Pomalidomide when used with dexamethasone has activity in 30-60% of patients depending on disease stage. Carfilzomib is an irreversible proteasome inhibitor with favorable toxicity profile (minimal neuropathy) and response rates of 17-54% depending on the disease stage treated. Novel targets are also being explored. Histone deacetylase inhibitors such as vorinostat and panobinostat are in phase II testing although results from a randomized trial combining vorinostat with bortezomib were disappointing. Other small molecules or monoclonal antibodies with novel targets such as kinase inhibitors(AKT, CDK5) and cell surface receptors (e.g. elotuzumab) are undergoing active investigation.

Every time we go and see Dr. Berryman in Dallas, he talks to us about how MM is a "relapsing" cancer and that he doesn't know how long they are going to keep Tanner on "maintenance" treatment.  He explains that as long as he is tolerating treatment so well, they see no reason to stop chemo any time in the near future and he goes on to explain that new medications are going to be available by the end of the year - which will be beneficial if Tan ever becomes resistant to the maintenance he's been on for the last 2-1/2 years.

Multiple myeloma: treatment evolution:
Melphalan-prednisone (MP) was introduced for the treatment of MM in late 1960s. In the subsequent 30 years, the treatment improvements remained stagnant, since more complex chemotherapy combinations, such as vincristine, doxorubicin, and dexamethasone (VAD), or with the addition of BCNU (VBAD) or melphalan and cyclophosphamide (VCMP), only led to small increases in the overall response rate but without differences in survival, as assessed in a large meta-analysis that included over 6000 patients. The next step forward was the use of high-dose melphalan followed by stem cell support (autologous stem cell transplant - ASCT) for young myeloma patients, which resulted in a significant improvement in disease free survival and overall survival. However, for elderly patients MP remained as the standard of care. From year 2000, a revolution in the treatment armamentarium of MM has emerged with the availability of new agents with singular mechanism of action such as thalidomide and lenalidomide (Revlimid®), both immunomodulatory drugs and the proteasome inhibitor bortezomib (Velcade®).

The high dose melphalan followed by stem cell transplant with subsequent thalidomide - Revlimid treatment discussed in the abstract above is the treatment that Tanner received in Arkansas...the treatment that his insurance company denied coverage for stating that it was "not standard".  Thank goodness Dr. Barlogie proceeded with care for Tanner with this cutting edge treatment - even knowing that payment was being denied. He never hesitated and never delayed in his care of Tanner no matter what the insurance company said. He had to have known that there was very little chance they would ever be able to collect the hundreds of thousands of dollars in bills that were being built up... even if I make payments the rest of my life... but he never ever hesitated...

He is truly one of mine and Tanner's heroes...

Love knows no limit to its endurance, no end to its trust, no fading of its hope, it can outlast anything. Love still stands when all else has fallen...

Thursday, May 10, 2012

Pain Management

Do you have any idea how hard it is to know your child is hurting and you can't ease that pain? I want to just take it away... take it all away... and I can't.  I can't do anything but call doctors and try to push them to get him in with a pain specialist.  All I can do is research on the internet and try to find someone to help him...

Dr. Berryman referred us to a Back and Spine Orthopedic Surgeon in Dallas (who works specifically with cancer patients) whom I've called several times this past week.  I finally got through to someone yesterday, only to learn that they don't accept Medicaid patients.  She said the only Oncology Orthopedic surgeon she knows of in Dallas is Dr. Gilbert (and his partner in the practice).  I explained to her that Dr. Gilbert is the doctor who performed the surgeries on Tanner's legs, but that Dr. Berryman said he wanted Tanner to see someone who deals specifically with back issues.  She just kept apologizing.

I emailed Dr. Berryman and his assistant, Courtney, yesterday to let them know what's going on - and in the meantime I've started searching the web trying to just find someone over here in Fort Worth.  I started thinking about Dr. Maymie Richie-Gillespie (who diagnosed Tanner three years ago) and it came to me that she's a Musculoskeletal Specialist who deals with cancer patients all the time - and she works with young people (through Cook Children's Oncology Department).  I called her adult practice yesterday and asked if they accept Medicaid patients and the receptionst told me that she did only through her JPS office.

I've called that office and left a message on their answering machine explaining that Dr. Richie-Gillespie is the one who diagnosed Tanner three years ago and that he now has a compression fracture in his back and that we need to see if we could get him an appointment.

Today, I've received a text from Tanner telling me, "My backs hurting quite more today for some reason. It's just a lot spasms".

If you have a child, then I'm sure you realize how that makes me feel.  It doesn't matter that he's 20 years old... He's my baby and he's hurting and I can't "fix" it... So, I called the JPS office again and left another message. I told her "You know how us mothers are. My son is hurting and I need to find someone who can help him."  Now I just wait for someone to answer me.

Three years ago, when he first broke his leg (and the tumor was discovered in his tibia), it took three weeks to get into Dr. Richie-Gillespie's office.  I can only imagine how long it will take to get him into their JPS office.

I know that Tanner has cancer.  I know that he's going to have to deal with that fact - and the pain - for the rest of his life.  I just want this addressed.  I want them to do everything they can to give him as much relief as is possible.

I love Dr. Berryman.  When we are in his office, you can tell he really cares.  He will sit and talk with us and he takes Tanner seriously and he wants to give him the care he needs.  When we were there over a month ago and talked about Tanner's pain problems, he told us he's going to look for a Pain Management Specialist - and was going to try and find someone who works with young people.  Then after Tanner had the MRI and we went to find out the results (and learned of the compression fracture), I asked him if he had looked for a pain specialist for Tanner and he looked sheepish and said "no".

I know these doctors are busy.  You sit in the waiting room and see dozens upon dozens of cancer patients sitting all around you and you realize that Tanner is just one of many... but he's my son... and I see his pain... and I don't want him ignored.

I texted one of my cousins yesterday and told him I was fighting depression, and I didn't know why.  I asked how can I be fine one day and fight despair the next?  There's no reason for me to be feeling depressed... everything is fine in my own personal life... I guess it was just a bad day.

It's ok... this is our life... I just want my son to be as comfortable as possible.  I'm sure we'll get an appointment with someone and they'll be able to help Tanner, and it will all be okay.  I'm just a mother.

The greatest happiness of life is the conviciton that we are loved; loved for ourselves, or rather, loved in spite of ourselves... Victor Hugo

Friday, May 4, 2012

Compression Fracture

I took Tanner to see Dr. Berryman in Dallas on Wednesday and we got the results of his MRI. 

He has a compression fracture of one of his vertebrae with 10% height loss. 
Dr. Berryman said that he’s sure it’s contributing to Tanner’s pain, but that he doesn’t think surgical correction will be necessary.  He also said that because the pain Tanner feels in his back isn’t limited to strictly the spine area, he doesn’t think the pain is caused entirely by the fracture.

He’s recommended that Tanner see another Orthopedic Surgeon, Devish Ramnath, in Dallas to get his opinion for treatment – and thinks that, possibly, some nerve stimulation, back exercises, and physical therapy could be beneficial.  I’ve left a message for Dr. Ramnath and, hopefully, we will be able to get Tanner in to see him in the near future.

We went today to Dr. Asad Dean’s office and his PA, Mark Davis, was asking about the MRI.   He seems to feel that the majority of the pain Tanner is experiencing in his back is most likely caused by all the chemo medications and explained that Velcade causes muscle damage (which Tan has been on for almost three years now).

Tanner has shown so much patience through all these years of treatment, but you can tell, sometimes, that this persistent pain is wearing on him – as are all of these treatments – and he starts to lose some of that patience. 

I texted my boss this morning to tell him we were running late at the doctor’s office, and he replied that we have “been on this journey for such a long time”.  My response was that this was what Tanner was going to have to deal with for the rest of his life.  Thankfully, all of this treatment has kept him in remission for 2-1/2 years… but eventually, all of these drugs start to catch up with your body.  None of this has been easy…

On a personal note, I started yoga a month ago and have been meeting my friend, Donna, in Burleson on Monday and Wednesday evenings.  It has been wonderful!  My body and mind feel so much better!! 

The stress builds and builds and manifests itself in my muscles and after an hour of yoga, I can feel the difference in the tension in my body.  I’m learning to relax and stretch all areas of my body… and also my mind. 

These last few years I’ve allowed myself to stress and become absolutely miserable over things I have NO CONTROL of…  I’m learning to let go and live in the moment… and I’ve had good moments this week.  That’s a start…

He who has a why can endure any how…
Friedrich Nietzsche