Taking Care of Business

I know I just posted yesterday... It's like all or nothing with me when it comes to the blog...

Tanner woke up this morning with his left foot swollen and red.  I've called the doctor's office and left a message and sent an email.  I'm hoping it's just a reaction from the dye used in the bone scan yesterday but the swelling and redness is all centralized in the left foot, so I just don't know.  I told him to take some Benadryl and keep the foot propped up...

He's with his Granny Jane for a few days and she's helping him "take care of business".  She's good at that sort of thing and from the number of calls and texts I've gotten from Tanner today, I think they are getting things taken care of!

They are supposed to go and visit some schools and check into some grants - so here we go, getting ready for him to move on to the next phase of his life.

Our friend, Shirley, (another patient from Little Rock) gave me the Facebook information for a man in his fifties here in Fort Worth who is another MM survivor (who has a blog).  He works at Fort Worth Harley Davidson and I sent him a "Friend Request" a couple of weeks ago and he accepted.  Tanner wanted me to email his information to granny's house so that he can reach out to him and possibly meet him... Maybe he can mentor Tanner to some degree and help him get focused on the positive side of life with MM...

We went to church again this past Sunday and, this time, Tanner attended the "Journeys" service with the other college age kids.  When the regular service let out, I went out in the vestibule and Tanner was already waiting for me (the college service is a couple of blocks down the road from McKinney Church) and he said he walked down to the church with some of the other kids after their classes ended.  He also said that he wants to go back and continue with the Jouneys classes on a regular basis so that he can get to know some of the other young people.

I, myself, have looked into some volunteer opportunities here in Fort Worth and Tanner saw the paperwork on the kitchen table and said that he wants to do some volunteering with me - so maybe we are ready to move on to whatever life has next in store for us.

We're moving on with our lives... Wish us luck!

When I stand before thee at the day's end, thou shalt see my scars and know that I had my wounds and also my healing...  Rabindranith Tagore

Bone Scan

I'm sitting in the waiting room at Baylor Dallas while Tanner is having a full body bone scan.

He came home from Montana full of wonderful stories of activities, new friends, dreams - and a sore left tibia. This is the area where the cancer was first discovered in June 2009 when the bone snapped in two and has been so slow to heal.

He did so many things... zip lining, hiking, climbing ropes, basketball in the pool... I think he over exerted the leg (though the right leg that just had the rod inserted has done great) and a knot came up and has been causing him some discomfort.

We went to the Orthopedic Surgeon's office on Friday and when they pressed on the area of swelling, he cried out in pain.  They did x-rays and the nurse practitioner said there is a definite crack through the bone and she doesn't know if it's new damage or just the initial crack that still hasn't healed all the way.

She said the best thing to do would be to have a bone scan performed so they can check it out - and when we went to the schedulers office, we were surprised to see that they scheduled a full body scan instead of just the leg.

Tanner had a little bit of an emotional break down at the doctor's office and ended up in tears.  It's been a while since he's broken down and I'm thinking maybe it had something to do with the fact that he was exhausted from surgery on the right femur followed by the trip to Montana.

He handles his health issues so well.. I'm surprised he doesn't have these emotional melt downs more often.  I told him that I can hardly imagine how hard all of this is for him to handle and that all I could tell him is that I too, as his mom, have difficulties comprehending why this happened and that if I ever lose him, I will want to follow him.  That's just how a mother's love works...  Anyway... we ended up having a heart to heart in the doctor's office on Friday and today here we are, once again, at the hospital.

We are supposed to get the results on Thursday, but I've since remembered that he has chemo scheduled on Thursday so I'm going to have to do some rearranging..  He is actually hoping they will just go ahead and put in a rod in this bone too.  He said it's been two years and he's tired of worrying about it breaking - and that when we go to Hawaii for his Make A Wish trip in August, he doesn't want to end up in the hospital...

I think it's because he has his mind set on para-sailing....

Camp Make A Dream

I'm sorry I haven't been updating the blog.  I've been in "withdrawn" mode lately...

Tanner is doing well and has been at Camp Make A Dream outside of Missoula Montana since last Wednesday.  He's been texting and sending photos every day and it sounds like he's having the time of his life.

I know that he's feeling the sadness of his time at camp drawing to a close (they come back home this Wednesday) but he says that he's made lifelong friends.  Everyone attending camp are all near his age and - each and every one of them has cancer.

I can't wait to get all the details when he gets home but I can tell you he hasn't let the cancer, the weak broken left tibia, or the recently placed rod in his right femur slow him down.  He's been hiking, horseback riding, zip lining, and walking the tightropes 40 feet off the ground.  They've had cookie bake offs, put on skits, and had some long discussions about issues that they all have to face when dealing with the impact cancer has on their lives.

He said they all wrote a message to someone who means a lot to them and hung the messages in the air.  At the end of the week they will burn the messages so that they become "final".  He told me he wrote a message to his cousin Kelson - who passed away with cancer shortly before Tanner was diagnosed.

He was able to meet his cousin Beth and her mother, Barbara, in Missoula this past Saturday and they spent some time together shopping and just hanging out.  Tanner said they had a great time and I am so very grateful they were able to work their schedule out to spend some time with him while he was up there.

He texted me Sunday night and told me it was so beautiful up there and he wished I was there to experience it with him.  I texted him back that he might be ready to move up there now.  He replied that it would be a big change, but that we needed some big changes in our lives.

I hope with all my heart this trip was a life changing event for him.  He has so much potential and I love him so very very much. 

Life can turn in an instant.  You could walk into an appointment one day and life as you know it can change in a heartbeat...

It's time to let go of the baggage and live this life with all the happiness, love, and hope we can grasp...

Successful Surgery

Surgery was done Thursday morning and the doctor said that the rod was placed without difficulties and that there was no sign of active cancer in the large lesion in his femur!! 

Just hearing the words made me realize how much I was worried that the lesion might still be active - and Tanner's granny and dad (who went back to see him first after surgery) said that he started crying when they told him that the biopsy showed no active cancer... so he too must have also been more worried than I realized... than he let anyone see.

He was hurting quite a bit so he and I both were concerned about how much it was going to hurt the first time he got out of bed, but it went much better than either one of us expected.  In fact, he tells me that it helps with the pain when he moves around fairly regularly. 

We got to the hospital Thursday morning about 6:45 a.m. and then arrived back home Friday around 4:30 in the evening and I have to admit, I can't remember the last time I felt that tired.  There's something about sitting in the hospital that's just exhausting - and those pull out chairs aren't the most comfortable beds in the world (much less the fact that someone was in the room at least every two hours).

I think Tanner and I both slept the sleep of exhaustion last night.

Baylor Dallas was a new environment for Tanner and I both.  They haven't had the last year and a half history of treating his Multiple Myeloma and I watched them all when they would ask him what was wrong...  The looks that would cross their faces...  The questions and concern that appeared in the resident's eyes after he asked if Tanner had been checked to see if he had lesions in the skull and was told that yes he does have some there - and all over his body; that in fact he had innumerable lesions throughout his whole body.

I know there are so many people, so may children, dealing with cancer (and other horrendous diseases) throughout the world - but this is my child and I absolutely abhor that this has happened to him.  On the other hand, I've come to admire him so much over the last two years.  I've watched him deal with the shock, sickness, and worry and I've watched him push it all aside and go on with his life.  I've watched him learn how to laugh, love and live with cancer ever present in his world every single day...

Sitting alone, again, in a hospital room with my son lead to some more soul searching on my part.   I need to find the joy in my days... that joy that I've lost...  I need to do it now because, really, none of us know what tomorrow's going to bring.

Many of us spend our whole lives running from feeling with the mistaken belief that you cannot bear the pain. But you have already borne the pain. What you have not done is feel all you are beyond the pain.

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.