Wednesday, May 23, 2012

Surgery Date

Steve got a call from the PA with the surgery department today.  The earliest date they can get him in for surgery is June 5th.  He will go in for a consult with the entire team on June 4th.  We don't have times for the consult or the surgery yet.  The PA said that they are going to be doing the surgery through the abdomen.  We were kind of hoping for a laproscopic surgery, but it doesn't look like that will be an option.  The laproscopic surgery has a recovery time of 2-4 weeks (1 day in the hospital) while the abdominal surgery has a recovery time of 4-6 weeks (3-5 days in the hospital).  Oh well, we will take what they think is best for Steve!  (P.S. Cheris, we are still going to Reba someway/somehow!!  I told Steve he can hang in the room if need be!)

'Hope' by Stephanie Bowen - Melanoma Survivor 

Tuesday, May 22, 2012

Surgery Update

Yesterday, Steve's doctor, Dr. Kim was scheduled to meet with the surgery team and a few other melanoma doctors to decide if removing the adrenal tumor from Steve would be an option.  This is something I have personally been wanting since the day we found out it was there!  Unfortunately, Stage IV melanoma patients are generally refused surgery.  Usually the cancer is so aggressive that having surgery is a bigger risk versus reward.  So, we have always been told it was not an option.  After Steve's last CAT scans showed that the melanoma has not spread a bit and has had a small bit of shrinkage, Dr. Kim agreed that surgery may be an option for Steve.  So, I called this morning and was able to talk to Urvi, Dr. Kims PA.  (Dr. Kim is out of the office on Tuesday's).  She said that the team met yesterday and they all agreed that it would be ok to move forward with surgery!  We do not know much more than that at this time.  Urvi said that someone would be contacting us soon to schedule a consultation and then we will go from there.  I am thinking we will get that call sometime this week and Steve could be having surgery as early as next week!  Once the adrenal tumor is gone,  Steve will only have melanoma present in his right clavicular lymph node, a very small spot on his lung, and a few small nodules in his abdominal cavity.  While this may seem like a lot (any cancer is too much!!), it is actually very minimal for a stage IV melanoma patient.  After the adrenal gland tumor is gone, he will start a new treatment (not sure which one yet) to try and get rid of the remaining melanomas and/or shrink them (most importantly prevent the melanoma from spreading!!).

I will update as soon as I know about the surgery!  Thank you to everyone for your continued support!

Thank you to 'Texas Hills Insurance Agency' - My mom is a commercial insurance underwriter and 'Texas Hills Insurance Agency' is one of her assigned agencies.  The agency participated and raised money for 'Relay for Life' and did so in honor of Steve.  This is the photo they sent my mom.  Thank you!!!

Monday, May 14, 2012

Result Day

So, today we got the results of Steve's CAT scan and MRI.  I have secretly been VERY worried about the MRI as Steve has been having headaches for about 10 days now.  Melanoma spreading to the brain is very common.  I am happy to report that the MRI was clear!  No melanoma in the brain!  Yay!  In regards to the CAT scan.  It was pretty much exactly what we expected to see.  There were NO new growths!  But, the CAT scan did not show much shrinkage of the tumors that he already has.  Some people may read this and take this as bad news, but it isn't actually all that bad.  Of course, who wouldn't want the CAT scan to suddenly show no tumors?  But realistically, we knew that was not really going to be the case.  A-I can still feel the tumor on the lymph node (although it has shrank drastically since December), and B-They have told us many times that the tumor on the adrenal gland shows necrosis (dead cells).  Necrosis may sound good, it's dying cancer cells right?  Well, it can be a sign that the treatment is working, or it can be a sign that the tumor is so big that it is suffocating itself.  So, parts of the tumor are still alive and parts of it are dead.  There is really no way for us to know without doing surgery and/or another biopsy.  So, what's next??

Steve has been doing biochemo which consists of 3 chemos and 2 immunotherapies.  The maximum they will do of this treatment is 6 rounds.  Steve has completed 4 rounds.  Not every person's body can tolerate the full 6 rounds.  That seems to be the case with Steve.  Even though they dropped one of the chemos from his last round of biochemo, his counts were still critically low after this last treatment.  His levels have still not completely returned to normal (although they should be back to normal by the end of the week).  So, Dr. Kim would like to stop the biochemo.  Bittersweet.....It has prevented the melanoma from spreading, but it also causes Steve so much pain, fatigue, etc. When you have stage 4 melanoma, surgery is usually NOT an option.  The reason being, they are afraid that they are giving you unnecessary risks.  Every surgery poses a risk in any situation, then on top of that, the cancer could spread during recovery.  Why would you risk the cancer spreading if it appears to be stable?  Well, generally most people with Stage 4 cancer have a lot more tumors already.  Although Steve is stage 4, he only has a few tumors, the largest being the adrenal mass.  I suggested to the nurse and the PA when talking with them before Dr. Kim come in that we stop the biochemo, do surgery to remove the adrenal mass, and then continue with some sort of treatment.  Both the nurse and PA kinda shot this down since it is not standard practice in Stage 4 treatment.  However, when Dr. Kim came in, he mentioned it before I even had a chance to!  He is going to have a meeting with the surgery and melanoma team on Monday and they will decide if they want to do surgery.  Since the melanoma is so under control (or appears to be) and Steve still has the biochemo drugs in his system, if the surgery team agrees to do the surgery, he will have surgery to remove the adrenal mass as early as next week, or the following week.  If they do not agree to do surgery, he will probably start a clinical trial, or Zelboraf which is a drug that only people with the BRAF mutation can take (Steve has this mutation). Read more about Zelboraf here: ttp://   If he does have surgery, this is likely the drug he will start as early as 2-3 days after surgery.  The good news is none of the new drugs that he will take are chemos.  They are all immunotherapies.  Immunotherapy drugs do not mess with your hemoglobin, platelets, white blood cell counts, etc.  So, those days are behind us for now!!  Steve's hemoglobin is still low.  The doctor wants Steve to have a redraw on Wednesday and see if the hemoglobin comes back up on it's own.  If not, he will most likely have a whole blood transfusion on Thursday.

So, at this point we just sit and wait a bit.  Steve's numbers will likely climb back up on their own this week. Then we will find out late Monday or early Tuesday if the surgery/melanoma team have decided to go forward with the surgery or not.  If not, we have a follow up in 4 weeks with Dr. Kim and will discuss with him which drug that Steve will move forward with.  Regardless, our life for now should "semi" get back to normal soon.  Steve should start feeling good and not feeling so fatigued and sick all of the time.  His white blood cell counts should stay up, so we should be able to get out and about more, maybe take the kids on a vacation or two this summer, hang out with our friends more, etc. No more week long stays in the hospital (with the exception of possible surgery and some of the clinical trials).  The other drugs that he may take Yervoy is an outpatient 1 day treatment every 3 weeks, and Zelboraf is a need for hospital stays!

Thanks again for everyone's prayers, well wishes, positive thoughts, calls, texts, messages, cards, etc, etc, etc.  We appreciate each and every one of you for investing yourself into this journey with us!

Sunday, May 13, 2012

Happy Mother's Day! (CAT scan, MRI day)

So, today Steve and I had to get up at 6:30 (that's never fun!).  We got Ashlynn ready and took her to moms house. (Sadie spent the night with her cousin.) I also brought mom her mother's day presents and dropped off Ashlynn and Sadie's stuff and we were on the road by 8:10.  My mom is keeping the girls overnight since Steve has an appointment at 8:15 tomorrow morning.  We went ahead and got a hotel room close to the hospital so we wouldn't have to wake up at 5am tomorrow and then battle rush hour traffic.

Today, we had to be at MD Anderson at 8:45 for Steve to get started.  First he had an MRI.  The MRI ran really smoothly and we got out of there pretty early.  We were hoping since we made it to the CAT scan appointment early that we may get out early.  But no, instead, we got there at 11:00, his appointment was at 11:30 and he didn't go back until a little after 1:00.  As always, while sitting in the lobby we met several people.  One guy we met, was about Steve's age, and there with his parents. (Here is his Facebook page He lives in Dallas, but his parents live in northern Louisiana close to where Steve is from.  So, we got to chit chatting and turns out this guy has melanoma too.  He found a "mole" that he wanted to get checked out in 2010.  The dermatologist did a biopsy and it came back as stage 2 melanoma.  He is now at stage 3b.  He has had several large lesions removed from his body and has had to have skin grafts to repair those areas.  Several treatments he has had have not worked.  The latest treatment he did was "Yervoy". Yervoy was just approved by the FDA in March of 2011.  Yervoy has been the only treatment that has "worked" for him so far.  He has not had any issues with his tumors in 6 months.  He is not cancer free, but the tumors are not spreading aggressively like that had been.  His mother showed me photos of his tumors prior to removal.  They were baseball size or bigger, blackened, dead skin areas.  Similar to this,r:1,s:0,i:75&tx=150&ty=63  It turns out, he and Steve share the same doctor (Dr. Kevin Kim).  It's always nice to meet and talk to other people that are going through the same thing, especially melanoma specifically.  It's nice to hear how well Yervoy is working for this guy.  Although these drugs are hit and miss from person to person, it's great that they are making advancement in the melanoma world.  There are still several  promising clinical trials in late stages and I sure hope for even further advancements in melanoma.  I will be doing the AIM for a Cure walk in Houston in September and you guys can help Sadie and I raise money to help this "hope" become a REALITY!

Steve trying to fake a smile.  He was not happy to have an 1 1/2 hour wait for the CAT scan!  He wanted to get it done and over with!

Me, sitting in the recliner.  If it wasn't FREEEEEZING in there, I probably would have fallen asleep in the comfy recliner!

Steve and I got to the hotel around 3:30 or 4:00.  Steve was not feeling well.  I think he had a reaction to the dye this time around.  He has been really cold since we left the hospital.  Really cold as in we have the HEATER on 79 in the room.  He started feeling a bit better, but not enough to go out for dinner. (I wasn't feeling going out for dinner either!!)  So, we ordered room service.  We had a schmorgesborg!  (Don't we always??)  We had chicken wings, shrimp quesadillas, cesar salad, and a crab cake dinner.  The crab cakes were sooooo good.  Now we are just hanging in the room watching TV.  Hopefully Steve won't have any trouble sleeping and we will get some rest.  We have to be up early tomorrow to get the CAT scan/MRI results.  I will update sometime tomorrow and let everyone know how it goes.

Our yummy dinner. 

Happy Mother's Day to all of the Mother's out there!  I miss my 2 monkeys today!  We are going to have our own "Mother's Day" tomorrow :)

Friday, May 11, 2012

It's a no hospital kinda day......

Steve had his lab work done this morning.  His white blood cells were 1.8, so he still has to stay away from people.  His platelets were 20 (they transfuse under 20, so he barely made it). His hemoglobin was 7.9, and they transfuse under 8.  However, since it was so close the doctor recommended that Steve NOT get blood unless he was feeling excessively fatigued or was having shortness of breath.  Steve absolutely, positively did NOT want to go back to the hospital today, so he was fine skipping the blood transfusion.  He doesn't have shortness of breath not extreme fatigue.  So, I thought we would be spending the day at the hospital but we didn't have to after all (yay!).  So, now we wait and go Sunday and spend the day getting blood work, CAT scans, MRI's, and possibly transfusions depending on the lab work results.  Then we will back to see Dr. Kim bright and early (8:15) on Monday morning to get the results.  I will update when we get the results.

Wednesday, May 9, 2012

Another long day....

I was finally able to take a moment and go see a dermatologist for myself.  I had a complete exam.  I went to UTMB Dermatology in Bay Colony and saw Dr. Erica Kelly.  She was GREAT!  I would highly recommend her!  She looked me over and said all of my spots/freckles/moles looked fine.  I have 2 darker spots on either side of my back that she wants to keep an eye on for any changes, only because they are darker than my other spots/freckles/moles.  But she was not too concerned about them.  I don't have to go back for 12 months.  I was in and out in less than an hour.  You know, I would have never even thought about skin cancer screening before Steve's diagnosis.  Now, I think why would I not get checked every year?  I get a mammogram every year!! TRUST me that is far more invasive, painful, and takes much longer.      If you are reading this, please schedule a dermatology appointment and please go once a year.  It is inexpensive (you can also find many free screenings) and takes less than an hour.  This could save your life!!

Steve had to go again this morning to have his blood drawn for labs.  The results were about as we had expected.  His platelet count was 9 (was 4 on Monday, but this is still extremely low, especially considering he had the platelet transfusion on Monday), hemoglobin 8.3 (up from 8.2 on Monday and they only transfuse blood when you are below 8), and white blood cell count 1.7 (down from 2. something on Monday).  Our regular nurse, Delores was out of the office again today.  I really hate when she is out, because we have to deal with other nurses who are swamped with their own patients and don't personally really know what's going on with Steve.  When the "fill in" nurse called me back to give me the numbers, she said that Steve needed to have a platelet transfusion again today.  Since she called me around 11:30 she had plenty of time to get it requested at the Bay Area location which makes it so much easier on us.  I had not heard back from anyone by 1:30, so I called back.  This time the "fill in" nurse told me that the Bay Area location does not do same day transfusions and they would schedule it for tomorrow.  I got a little upset and asked to speak with the head nurse.  With Steve's platelet count at a 9, we really can't gamble with waiting until tomorrow.  So, the head nurse got on the phone, agreed with me and got us set up at the Main Campus for 3:30.  I called the school and had them send Sadie a note to ride the daycare bus, called the daycare and asked them to add Sadie to the pick up list, and called mom (our continuous life saver) and asked her to pick up the kids from daycare.  We left about 2:15 and we got to MD Anderson at 3:15.  At around 3:45 I asked the check in person how far behind they were running.  She let me know they were running about an hour behind.  We finally got called back at about 5:00.  When we got to the infusion room, the nurse asked if we knew why the doctor did not order pre meds.  When you get platelets you are usually given Tylenol and Benadryl before getting the platelets.  There is a high risk for some sort of reaction and/or fever with platelets, that is why these are given.....but these have to be ON the orders.  So, then the transfusion nurse had to page the doctor and wait for orders for Benadryl and Tylenol to get added.  They finally got the orders, got the pre meds in and Steve was started on the platelets around 6:00.  The platelets take anywhere from 30-60 minutes depending on how many units he gets.  He did get a full 6 units today, so it took about an hour.  After sitting there for over 20 minutes after his drip was complete, I went to search for someone to come unhook him.  We did not end up leaving the hospital until 7:30ish.  By the time we got the kids and got home it was about 8:45.  Considering we left the house @ 2:15 and got home @ 8:45, the whole platelet process ended up turning into a 6 1/2 hour ordeal.....sigh.  But whatever, Steve has platelets and is good for another couple of days.  He will get blood work again on Friday.  I pretty much confirmed that Steve will NOT be starting his next round on Monday like he should have.  He will still however have his scans on Sunday and we will get the results and see the doctor the following day.

Waiting on the 8th floor outdoor deck/garden to be called for the platelet transfusion.

More of the gardens. 

Nice view from the 8th floor deck.  It was a beautiful day with nice breezes. 

Steve, not too happy today :(

Not sure if you will be able to read this, but it was kind of interesting.  Apparently they have "quality control" for the blood products.  Steve's bag of platelets was randomly drawn for quality control.  The letter basically explains to the nurse to keep the bag when it is unhooked, put in a biohazard bag and call quality control to come pick it up.  I just thought this was interesting. 

Steve is starting to get a little more depressed every day.  The toll the medicines are taking on his body are making him miserable.  We will discuss all of this with the doctor on Monday.  Maybe the treatment has worked well enough after 4 treatments to go ahead and stop treatments for a while and do surgery to remove the adrenal tumor?  We will see.  We will get all of our options and go from there.

Tuesday, May 8, 2012

Got Platelets?

Hello everyone!  Steve has been home for 10 days now.  This 10 days has probably been the best post treatment days since he started in terms of how Steve feels.  We came home on Sunday.  Usually Steve stays in bed for several days once we get home.  This time around, he has been up and out of bed most of every day.  He still takes naps here and there, but overall, it has actually been a fairly "normal" last 10 days.  Steve had his blood drawn last Thursday and his numbers were great!  His white blood cells were 6 (normal is 4-11), his hemoglobin (responsible for his energy) was 9.7 which is the highest his has been in a very long time and his platelets were 26 which is low, but to be expected and not low enough for a platelet transfusion.  We had a great next few days.  Friday we took the kiddos to eat at Cici's, Saturday we went to a crawfish boil at my moms house, and Sunday Steve's Uncle Tim and Aunt Robin came in from Bossier City, LA to visit for a couple of hours.

Finally got to wear my Fleurty Girl shirt!

Then comes Monday.  Monday was Steve's next scheduled blood draw.  I told him before he left that he would need a transfusion that day.  He wasn't feeling quite as good as he had been, and he was paler than he had been.  But overall, he still wasn't feeling "bad".  He had his blood drawn @ 10:00am.  We had an early lunch at Mamacita's (his favorite!!).  Again, other than a little fatigue, he was feeling pretty decent.  Steve works from home, and worked the rest of the day once we got home.  I called the Melanoma department @ 12:00 to get the lab results but didn't get a live person.  I left a message and went on with my day.  When I left to pick up Sadie from school @3:00 I realized I hadn't heard back from the nurse, Delores.  I called and got Delores on the phone.  She pulled up Steve's lab results and said "Oh no!!  He needs a transfusion TODAY!"  His platelet count was 4!!  The low range of "normal" is 150 - 450.  A transfusion is needed for anything under 20. 4 is critically low.  At 4 you risk internal bleeding, blood pooling under the skin, uncontrolled nose bleeds, etc.  Steve has had 2 transfusions already, but his levels were NO WHERE near this low.  So, needless to say we were VERY nervous.  By the time everything was set up, we were scheduled to be at MD Anderson Main Campus at 8:00 pm.  He got 4 units of platelets.  Dr. Kim ordered 6, but since there is such a shortage of platelets he only got the 4 units. (Platelet donations are only good for TWO days!!! So just think how many platelet donations are needed per day to keep up with the demand!!)  We got out of there around 10:00 and picked up the kiddos from my mom (who is the best!!) and got home around 11:30.  It was a long crazy day, that is FOR SURE!

Pretending he didn't want his picture taken.

Finally gave me a semi-smile.

Us goofing off while waiting for his platelets. 

I was taking the picture, so he kept doing silly stuff when I would snap the pic!  I just wanted a serious "CHEESE!!!!" picture!

I said "Let's get a smoochy picture" - and of course this is what I get.  

Steve will go back tomorrow for another lab draw.  I have a real good feeling he will need another platelet transfusion AND also a whole blood transfusion.  His hemoglobin was 8.2 on Monday, but they will not transfuse until you are under 8.  Well, I have a feeling that will be tomorrow.

For everyone that asks how Steve is feeling.  He is actually feeling ok.  You really have no "side effects" when you have low platelets.  He worked again today and we just had an overall "normal" day.  You really wouldn't "know" Steve has cancer unless of course you know....haha.  He really has enough energy to make it through all of the normal day to day activities, we go have lunch, he rides with me to pick up Sadie from school sometimes, he helps Sadie with homework, he eats normally, he helps clean up after dinner, he watches TV, he laughs, he plays with Ashlynn, he plays computer games on his computer, etc, etc, etc.   Unfortunately, the treatment just causes his numbers to drop.  Like I always remind him.  The cancer is not causing this, the drugs are causing this.  Once the drugs are finished, these side effects will go away too.  We are thinking the doctor may give him an extra week off again in order to let his body have an extra week to get where it needs to be.  It will just depend on how his labs go tomorrow and Friday.  Steve is scheduled for CAT scans on Sunday, the 13th to see how well treatment is working.  We should get the results on Monday, the 14th.

Thank you for everyone's prayers, well wishes, texts, messages, cards, etc.  And thanks again for everyone who donated to the AIM for a Cure Melanoma walk.  Me, Sadie and my nephew Lee walked the 5k on Saturday.  Between the 3 of us, we raised over $3,000!!!