Remiss

I've been remiss in keeping up with the blog.  I apologize...  I've been so extremely busy at work that by the time I get home, the last thing I've felt like doing is sitting down in front of the computer again.

We visited with Dr. Nathan Gilbert this past week and Tanner has decided to go ahead with surgery on his right hip. 

This has been his decision.  He's the one who approached his Fort Worth doctors - and then also Dr. Berryman in Dallas - and asked to see someone about the lesion in his right femur.

The pain has been worsening and, from what I understand, it's almost like a toothache.  That deep throbbing pain that is ever present.  He can learn to live with it, but it's always there, and it wears on him day in and day out.

Then there's also the worry that he's been dealing with... the "what if the bone snaps"...  "what if I make a sudden pivot on my foot and the hip bone just gives out"... "how long would I be disabled if the hip breaks"...??

As he told Dr. Berryman and Dr. Gilbert, it's been two years since his left tibia broke and it's only now healing; how long would it take for the femur to heal if it were to break?  How long would he be disabled?  How badly would it hurt?  Could he be crippled for the rest of his life? 

Both doctors told him that they agree with him.  He's only 19 and will want to live as active a life as he can; he shouldn't have to live with the constant worry of his hip breaking...

When we went to see Dr. Gilbert, I thought he would talk about all the different options and we could just see what possibilities would be available.  The next thing I knew, surgery was scheduled for this coming Thursday.

Of course, I'm his mom, so now the worry has set in...  What if they shatter the bone?  Multiple Myeloma bones are not like regular bones - what if something goes wrong?  Then there's the fact that he's on Zometa (a bone strengthener) that hardens the bones...  Dr. Gilbert has done this procedure on other Multiple Myeloma patients and it's not that I disagree with the idea of surgery, it's just that I'm "mom" and I worry.

Tanner tells me this is his decision - and I guess it's time I start letting go and letting him start to take control.  This is his life and he's going to have to live that life with cancer every day for as long as he lives...  I have to start stepping back and let him take the lead...

How did this happen?  How did we come to this... to a place in our lives where I have to step back and let my son deal with decisions regarding his own cancer treatment?  I've been "fine" all day... why do I feel like crying tonight?

You know me by now; tomorrow will be a better day... A day spent with my grandson and then a barbecue with friends!

"People are afraid of themselves, of their own reality; their feelings most of all. People talk about how great love is, but that's bull.... Love hurts. Feelings are disturbing. People are taught that pain is evil and dangerous. How can they deal with love if they're afraid to feel? Pain is meant to wake us up. People try to hide their pain. But they're wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It's all in how you carry it. That's what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you're letting society destroy your reality. You should stand up for your right to feel your pain.”..Jim Morrison

Dr. Robert Berryman

Can you say "loooong day"?

I'm thinking I'm too tired to go into very many details tonight but I guess we'll see how this goes...

We arrived at the Sammons Cancer Center at Baylor in Dallas at 2:30 today and finally arrived back home about 7:30 tonight.  Another tiring day...

But... Tanner and I both really liked Dr. Berryman.  He apologized profusely for our having to wait so long (over 2 hours) and Tanner and I both told him that was ok; we have learned the art of patience the last couple of years.

We talked at length about the treatment Tanner had received in Arkansas and about the maintenance chemo he's still undergoing.  He said that he wouldn't change anything about the program Tanner's on at this point and said that he would be glad to take the case - and work with Little Rock...  I told him we would have to see how Dr. Barlogie feels about that since he told us he expects us to live in Arkansas by the time the next re-staging tests are scheduled in August (so that all the testing can be done at UAMS from now on).

Come to find out Dr. Berryman has met Dr. B - and has actually "followed" him in clinic at MIRT (so he knows how "passionate" Dr. Barlogie is).

He also went on and explained to us that his mother had died of Multiple Myeloma - which inspired his passion to fight this disease - and that he took her to Arkansas for an evaluation many years ago.

Tanner explained to him about the pain he's feeling in his right hip and Dr. Berryman said he has a couple of Orthopedic Oncologist Surgeons that he will call tonight and explain about Tanner's case and would like for us to come back next week to consult with them and get some of their ideas and possible recommendations.

He said that Tanner is a young man with "a lot of living in front of him" and he shouldn't have to be worried about having his hip break if there is something that can be done to prevent it from happening.



He also want's us to bring Trevor, my other son, with us to the appointment next week so that they can run a blood test and see if he would be a stem cell donor candidate.

 He explained to Tanner and I that he's already had the best, most aggressive treatment that a person could have.  He needs to be prepared for what to do if, in the future, he should relapse - and that that might be the option of a donor stem cell transplant instead of an autologous transplant...  He explained that it's his job to always be looking to the future and planning for the "what if's". Tanner told him he's trying to do the same thing himself.

Suffice it to say, Tanner and I both were impressed with this doctor and look forward to hearing what the Orthopedic Oncologists might have to say next week.

I'll give more details soon, but right now I think I've had all I can stand for one day...  Good night all...

A Long Day

Today was chemo day and we were there for three hours when they finally came over to us and told us that they had "forgotten" to sign the orders for Tanner's medications and hadn't even ordered the chemo yet so, needless to say, it was a really long day...

Tanner seems to be doing fairly well except that he's having more pain in his right hip where the largest lesion is located (and he told me today also in one of his shoulders). 

He want's to talk to an Orthopedic Surgeon about the hip because he's afraid the femur is going to break.  When we asked Dr. Nicholas last year about the lesion in the right femur, he told us "we'll fix it if it breaks"...  Tanner's thoughts are that if there's some sort of surgery they can do to help strengthen the bone to stop it from breaking, he would rather go ahead and have surgery rather than to deal with the pain and trauma of waiting for it to break.

My thinking is this might be just the beginning of having to deal with the discomfort and pain of Multiple Myeloma.

Dr. Albritton wanted us to schedule Tanner to start some phyisical therapy (to see if it can help with some of the pain) but I told the nurse I don't want anyone stretching and doing any therapy on him until we ask a MM Specialist for their opinion. 

My fear is that someone not familiar with the fragility of MM bones might cause Tanner more harm than good.

Tomorrow we have an appointment to see Dr. Robert Berryman over in Dallas at 3 p.m..  We completed the new patient packet tonight and it said to be prepared to be there for 3-4 hours so tomorrow will most likely be another long day.

Since I'm thinking I'm going to get up and go to the office early tomorrow to get some of my work done before I have to leave for the appointment, I think I'll call it an early night tonight....

I'll let you know how tomorrow goes.

Maintenance Chemo - Again

Last week Tanner started his maintenance chemo - again.  This time seems to be a little harder on him than before since he's throwing up and and having "dry heaves" again... I'm not sure why the nausea is worse now than during this previous whole year of maintenance chemo - unless it has something to do with the fact that he hasn't had any treatment at all since January and his body has to get acclimated to all these drugs again....

I had a long conversation with Dr. Allbritton last week and to say she was a little "concerned" regarding our recent visit to Arkansas for the results of Tanner's restaging tests is putting it mildly.

She agrees that pursuing the possibility of local treatment is something that we need to explore and we have obtained referrals to a couple of different doctors in Dallas.  I am in the process of scheduling Tanner for a "2nd opinion" appointment as soon as we can get him into one of their offices.

Dr. Robert Berryman is a highly recommended Oncologist at the Blood & Marrow Clinic in the Sammons Cancer Center through Baylor Hospital.  He is affiliated with the Multiple Myeloma Research Foundation and participates in several of their clinical trials.

Dr. Larry Anderson from UT Southwestern Medical Center is another Oncologist who came highly recommended as a Multiple Myeloma specialist.

I'm hoping to get Tanner in to see one or both of these physicians in the near future so that I can get a "feel" for them and their treatment recommendations.

I've thought long and hard about all of this...  Believe me, the concept of changing doctors is stressful (to put it mildly) but I feel that I have to truly look at all aspects of Tanner's medical care - and that has to include our ability to maintain "life", (i.e., food, shelter, and support) while he is undergoing treatment.

Sometimes people tell me they don't see how I keep functioning the way I do...  How I "handle everything so well"...  I tell them I have to "keep going " every day...  But I'm struggling right now...  Somtimes this being a single mother with sons is almost more than I can bear...  I haven't lived up to the potential of motherhood the way I always dreamed I would...  Sometimes it's hard to handle all of "this" alone...

There's a wall in front of me, I can see it, and I think I'm about to hit it...