A curveball of sorts
Today started off pretty uneventful which for us is not too shabby. We got up, headed downstairs to the free breakfast our hotel offers, went back to our room and got ready for what would be a long first day at NIH. Gary had labwork at phlebotomy that took what seemed like 45 minutes to do. Then we headed up to clinic and waited another 45 minutes when Gary had to head downstairs for his CT scan of his chest to rule out a fugal infection. He came back upstairs within half an hour and then we waited another 45 minutes to get called back. Oh yeah as we were walking to our room Gary’s legs gave way again, just like the plane ordeal! That was fun, at least a doc was there with us.
Then he talked to the fellow and he left the room after about 20 minutes with us and went to get the team. I know I didn’t expect to hear what came out of the doctor’s mouth and I’m pretty sure Gary didn’t expect it either. The doctor basically gave Gary an out. He told him that usually after round 4 most patients are in remission and he didn’t seem too hopeful that rounds #5 or 6 would make that happen. Gary didn’t have to think long and hard on the choice he was given. He did what I would have done and that is to keep fighting the fight. He went into this knowing it was 6 rounds and here we are for round #6 so as long as he’s healthy enough to do it then why not give it a chance? Plus if he had decided to stop then he’d have to live with that guilt for the rest of his life, that “what if”. I know I couldn’t live with that hanging over my head day in and day out if I were in his shoes.
So he’s at the NIH getting another blood transfusion, yup he needs MORE blood, and he’ll officially start round #6 early tomorrow morning. We don’t know what lies ahead after this. All we know is that he’ll come back up to DC for tests in 3 weeks, but that’s it.
Never in my life have I felt more afraid. The anxiety of the unknown has been so overwhelming the closer we came to this final round. And I know its not going to get any easier any time soon. So much for having our lives go back to some bit of a normal after all of this.
All I want is for some better news, is that too much to ask for? Am I being too greedy to hope that he’d be cancer free in both his spinal fluid AND blood? All I do know is that I will cherish each day like it is my last. Not his last, my last. Cancer is an ugly ugly disease and I hope that one day a cure is created so that so many others don’t have to go through the pain and heartache that our family has had to go through.
Here we go round 6! Here we go!
I’m writing this blog entry from the NIH airport shuttle while we are stuck in rush hour traffic. Let’s just say this is not pretty at all! Almost rivals Miami *gasp*
We are here for what will be round 6, aka the last round! No airport experience yet as been uneventful really. This time everything was great. Plane was on time. We were on boarding zone 1 since we had enough A+ points with Air Tran to upgrade us to business class, which is quite nice (just not at regular price)
They called our zone and we got to the lady that scans your pass. When Gary got to the doorway his legs gave out due to a headrush. He tends to get those now anytime he gets up to fast. He went down fast and I had to scream for a wheelchair. They took him down to the plane and thanks to being in business class he only had to walk 2 rows to our seat. They checked on him a few times before we took off pobably for liability reasons. But it was a nice gesture.
Thankfully he’s feeling ok now. Our flight actually landed so early we had to wait on the Tarmac for our gate to open up. Now that’s a nice change!
Tomorrow is dreaded clinic where we will be asking some of those heavy questions like “what happens next if this round doesn’t wipe out the lymphoma from his blood?”
Not sure either of us want to hear the answer to that, but at this point it is very much a possibility and/or reality.
One never ending day
It’s been awhile since I’ve wanted a day to be over already because it was so just god awful bad. Today was one of those days. Where do I start? Oh yeah last night, Mikey was super cranky because he’s got his last 2 molars cutting through. Let’s just say he’s totally not himself. He wasn’t given any pain meds before bed and I thought for sure he’d wake up in the middle of the night crying. Nope he wasn’t the one to wake me up, it was Gary.
Around 2am Gary woke up with EXCRUCIATING pain in his knees. He described it as a razor like pain, or like getting shot in your knees. However you’d like to describe it, it did not look like fun at all. I called up the nurse at the NIH and she told me to give him oxycodone. We have to be careful with what pain meds he takes right now because he’s neutropenic. But that is one pill we both have and is safe for him to take.
So I gave him 2 pills (the max is 3). Half an hour later the pain was just getting worse and worse. In the past when we’ve gone to the hospital Gary was able to walk but when he told me he wanted to go but couldn’t walk I knew our choices of hospitals would be REALLY limited. Like a good wife, I picked up the phone and called 911 at 2:30. Within 5 minutes we had the paramedics in our house with a stretcher to take Gary out since he absolutely could not walk because the pain was THAT bad.
He got to the hospital and I followed in my car. We were there from about 3am until just before 7am. They gave him demerol which helped his pain immediately. They also did an ultrasound of both legs to make sure he had no clots, and thankfully both legs came up clean. The last time we were in the ultrasound room at a hospital was when I was getting my last ultrasound at 8 months pregnant. Let’s just say its totally different when its your husband laying down.
So the reason for the pain? We aren’t sure, but we *think* its caused by the neupogen shots he has to do daily to help generate his white blood cells. It’s known to cause joint pains in your big joints like your hips and knees. Gary has NEVER reacted like this but I guess never say never right?
Oh so yeah about it never ending….we went home and tried to catch up on our missed sleep. I got up and went to work and Gary texted me telling me he heard back on “THE” results for his spinal fluid and his blood at the NIH. We were hoping the longer the better. Shoot you’d think having more than a week on the blood would give us GREAT news right?
WRONG! Dead wrong! His blood still shows positive for lymphoma. We have no clue if this is working. They couldn’t tell us if they have seen any improvement in his blood. Which royally sucks!
But hey we did get some good news. His spinal fluid is finally cancer free!!!! Take that lymphoma!!!!!
His ommaya treatments are not over. He has 2 more treatments that are 2 weeks apart and then he’ll have 3 treatments once a month. His last treatment will be at the end of January.
So stay tuned, I’m sure I’ll have quite the update next Thursday after we talk to his doc. I’m NOT looking forward to that talk because I just don’t know what lies in store for us.
The reason why I’ll continue to give….
You might remember that back in July I felt this overwhelming need to do something. I wasn’t sure what it was, but it had to be something GOOD. Well we just so happened to have been at the NIH where Gary was undergoing his brain surgery for his Ommaya and I happened upon a booth right in front of the caferteria for the blood bank. There I learned that my blood type, A -, is not as common as I had thought. At that moment I knew what I had to do. I gave blood!
None of that really hit home until Gary needed blood himself. To think that someone just like me sat in a chair for about 15 minutes to give their blood to help Gary! Well I told Gary that I was going to make this a regular thing because quite honestly, why not! I’ll just make more of it. Giving blood these days is relatively safe and if I can save someone else’s life that’s really the least I can do. You apparently can only donate every 2 months and my 2 month mark has already passed, but I’ve already decided that I will once again give blood next week to commemorate the END of 6 cycles of chemotherapy.
I want to make this a regular thing for as long as I can give it. And more so because this past weekend Gary needed another blood transfusion. It was 3 units of blood, which means that it came from 3 different people (more than likely). Who knows what would have happened to him had he not gotten that blood! I’m extremely thankful to the 3 individuals that gave up their blood and sat in that chair, and probably was a tad lightheaded afterwards, all to help save a person that they do not know. And for this, I will continue to give my blood. It’s the least I can do to say thanks to those individuals and help others that need it the most.
We’ll be done in 3 weeks!
Yup you heard that right, in exactly 3 weeks Gary will be finishing up chemo. Last Thursday they drew blood to test for lymphoma. It should take about a week to hear back on that, actually we are hoping it takes longer than a week because in this case no news IS good news. The longer it takes the more likely they are having a difficult time finding lymphoma, which is exactly what we want at this point.
I’m sitting here right now as he gets his tap of his CSF and gets his depocyt injection. Hopefully this tap (which of course we want to take as long as possible to come back) will also show that its clear of lymphoma and is no longer suspicious.
Gary finishes his last two drugs today and then we hop on a plane home early tomorrow morning for 2 full weeks! It’s crazy to think that we are really close to being done with this crap. Ok I don’t think we’ll ever really be done with it but it’ll be nice to not have to be traveling every two weeks and for him to have to deal with 5 full days of chemo every 3 weeks.
Oh and good news, not sure if I posted about this but Gary managed to gain 5 lbs since his last trip! That’s awesome progress!!!!
Bye Bye Round Numero 4
As we get ready to take off for yet another trip to DC for what will be round #5 I figured I’d come online and post an update on how this visit home went. I’d also like to post some things that might be helpful to others going through this that we have figured out in the past 4 rounds, this was brought on by a recent comment to one of my previous posts.
Well this trip home has gone a lot better than the past 3 trips home. No visit to the hospital *knock on wood that it doesn’t happen tonight of all night*!!! No fevers!!!! A pretty damn good appetite! We did learn that with his depocyt injection into his ommaya he NEEDS to take a pill called dexamethasone for 5 days or else you are very likely to have headaches, nausea, a slight fever, neck pain, back pain, hmmmm am I missing something? Yeah so Gary had ALL of those side effects. Why? Because no one reminded us to refill his prescription which there were refills on! So major booboo on our part!!!
You might remember that marijuana-like drug that Gary was prescribed to help his appetite. Well the name of that drug is called Dronabinol and also goes by the name of Marinol. Gary only tried those pills a few times while we were still up in DC this last trip but he hasn’t really needed it since because he has had an appetite. I guess all it really takes is having a few doctors get all up in your face telling you that you NEED to either gain or maintain your weight and that you can eat all of the crap you want NOW when you want it 
Some things that he has discovered that he actually enjoys eating/drinking…..Carnation instant breakfast with whole milk and 2 scoops of vanilla ice cream, it makes one fabulous shake according to him. Ok maybe not fabulous, but its pretty good. Another shake mix that he has tried that have something like 600 calories once you mix it with whole milk is called Scandi Shakes. He particularly likes the vanilla flavored shake mixes also mixed with milk and ice cream.
Some of you might remember me and definitely Gary writing about him needing applesauce with his prednisone. Well the reason for this is because he’s taking 200mg of prednisone for the 5 days he is on EPOCH. That’s a HUGE dose compared to what others take. The pills are huge and super chalky as they go down. One of his nurses from his first round actually recommended trying the applesauce to help and it does help most of the time. All he does is jam a pill into the applesauce and he quickly swallows the pill and applesauce before his taste buds can actually detect the prednisone. It works if he’s fast enough and gets enough applesauce to coat it.
Another thing I’d like to share with others is a website his social worker turned me onto since I don’t really have much time go to a support group in person. It’s called The Wellness Community and they have online chat support groups depending on what you are looking for support with. I’ve only been able to participate with 1 group since they happen to meet on Wednesday nights and that corresponds with our travel days. But so far its been a GREAT help.
Alright that’s my update for now, I’m sure I’ll update a time or two while we are up in DC. May round #5 go as breezy as this past one!
A recent widow and single mom doing my best to survive on my own.
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