Consultation at MD Anderson

I should have known better than to schedule the first trip here on a Monday.

We got to the appointments on time and were able to find the Lymphoma center just fine.  The waiting room was HUGE and packed already - wall to wall - standing room only.   As we checked in we found out there was a "bit of a delay" because the computers were down.

After waiting over 3 hours we finally did see the doctor.  Here's what he had to say:

The follicular lymphoma has turned into the aggressive Diffuse Large B Cell Lymphoma (DLBCL). Since Tex has gone through chemo twice -  first go-round he had the CVP treatment, which is one standard treatment they use, and this last time with the modified R-CHOP - the other standard treatment, it wouldn't really do any good to repeat either one.  If we had to, we could repeat the CVP... but there's a chance it wouldn't work, especially since we're now dealing more with the DLBCL, than the follicular lymphoma.

There are currently 3 clinical trials going on, two of which are showing great promise.  (Ok, so that eliminates one already).  So he is sending out emails to these 2 and will see which comes back.  That will mean
1.  the treatment will be free since it's part of a clinical trial.
2.  We'll have to make the drive to Houston, at least once or twice a month, for the foreseeable future.

We're still waiting for a few ducks to get into a row.  There was an issue with the insurance -- which I talked to and it's OK until I get back to my records at home, so that small fire is still smoldering, but won't turn into a greater alarm fire.  Another issue is the request for the last PET scan they tried to pawn off on us, but the request has to come from them, so waiting to hear back that they received that information.  The next issue is when we go back -- they didn't tell us exactly when our next appointment was -- it'll either be Wednesday or Thursday -- but we're supposed to have it on an online patient portal, and it's not there. So... we'll have to get that figured out tomorrow. It may be they are waiting to see when the scan information gets in.

The one thing we do know -- we have Tuesday as a rest and recover day.  There are a couple museums we want to see, but for the most part, we just want an easy, restful day.  

Scan Results

We got the scan results on December 2nd.  It wasn't what we wanted to hear.

The scan looked about the same as the one done at the half way point.  Except one area in his abdomen looked a little worse.

The answer on what type of B Cell lymphoma we are dealing with in addition to the follicular lymphoma, went unanswered, mainly because they haven't checked.  They don't KNOW what type of B cell, other than an "aggressive lymphoma".

The options given  were to be seen at MD Anderson in Houston, and see a specialist.  This was beyond the realm of ability for our general oncologist to handle. He has repeatedly said this is a difficult case.

2nd and 3rd options were to do maintanence chemo, for an undetermined amount of time, but the chances of any change was slim.

4th option was to do nothing, which wasn't an option.

So, as of now, we are set up to see a Lymphoma Specialist at MD Anderson on the 15th.  It's a week later than the doc wanted, but it's the soonest we could get in.   There's no guarantee the insurance paperwork will be done by then, we'll have to keep an eye on that and make sure things are pushed through.

 From what I've been told, we'll be there for about a week or so.  No more than 7 days, so at least we'll be back home in time for Christmas.

The game plan right now, is a battery of tests, which may include another bone marrow test.  That will be needed if he is eligible for a stem cell transplant.  I believe that is the direction this is all headed.

So, we're back in the wait and see mode. Waiting for paperwork from the insurance to make sure we can keep the appointment, and then wait and see what the test results show.

The waiting game.....

I know I missed an update -- been trying to gather my thoughts together on what to write and how to write it.  And the more I gather, the more they scatter!!


We're in the hold-your-breath-and-wait-and-see  stage.   All his scheduled chemotherapies are done now.  The doc said no matter what the results of his next PET scan, he can not have any more of at least one of the particular drugs- it will cause too much heart damage. The scan is set for Monday the 24th, and we'll get the results on December 2nd.


Head is still reeling from some information the doc just dropped on us... and I'm trying to reconcile to myself - does it really matter that we didn't get this information before?  And I'm coming up with Yes, yes it does.

He let us know, that in addition to the follicular lymphoma -- the one we were familiar with and Tex had gone rounds with before,  there was an additional kind of lymphoma.   A more aggressive monster.  Now I know the doc had said this was a super aggressive cancer, and we needed to treat it aggressively.  And then told us the game plan of the R-CHOP (modified for his allergy) treatments, and how many and how long and what to expect.....and then we'd look into the options of stem cell transplants, since that would be his "Best option for a cure". 

So... now instead of fighting just one, we found out there was a B Cell lymphoma - but no other information other than that.  From my research I've found that follicular lymphoma can lead to diffuse large B cell lymphoma - which is aggressive and often fatal within 12 months if not treated. But again -- no confirmation from the oncologist on if this is the type of B Cell lymphoma he was talking about.  Do they consider it metastasized if one lymphoma leads to another? I don't know -- and all these questions were written down and handed to him - and ignored so far.

The second bombshell came when he said depending on the response from BOTH types of lymphoma would determine not only what kind of stem cell transplant could be done, but even IF it could be done.   Woah.. wait... what?   This was the game plan all along - from the first consultation there was never an IF.. it was a WHEN.  The only IF was IF we chose that route as being too risky.  And honestly, I was too much shock and fear to coherently form any questions at the time.  So I wrote these down too, and gave them to his nurse.  I want to .. no we NEED to know what changed.  What happened to "Best chance for a cure" and the doctor's damn-near excitement at this being a great option for him.  Now we're hearing if one lymphoma (don't ask me which one because I was still processing that there were now two!) responds better to the treatment, then they can use his own stem cells- and that is less risk since he won't have someone elses immune system introduced (This is best case).  If the other one responded better and one was left, then they would have to go for a donor, and that's when things get uber-risky. And this is all dependent on if he was even a viable candidate for transplant anyway.  We have "if"  balanced on "maybe"  balanced on "other dependent factors"...  And the only thing I know is this is the type of situation I just have to LET GO and LET GOD handle it.  He has guided us this far, he's not gonna let us down now.


Don't get me wrong -- I don't want him to have to have a near fatal blast of chemo, I don't want him to be in the hospital for God only knows how long and I don't want him to have to go through that, and the complications can be numerous and dangerous. I didn't want him to have to go through ANY of this crap.  But, I also DO want him to be around for a long long long time and I DO want him to be healthy.  If this gives the chance for him to NEVER have to sit in an infusion room again... It's worth looking into at least.

So, in a nutshell that's where we sit.  Lots of questions, not any kind of answers and effectively being ignored until our next appointment.

On the flip side though, Tex has responded well to his last treatment.  He's feeling pretty good, has got more energy lately, and we are all looking forward to having a full house of family and friends for Thanksgiving.  We do have oh-so much to be thankful for this year.  And it marks the one year anniversary of mom and my move out to Texas!

We all wish everyone a blessed Thanksgiving and peaceful, fun and safe times with family and friends!

Rounding the corner.....

It's been nearly 2 weeks from the last chemo treatment, and we're entering into what is normally his "good week" of the month.

I had been silently patting our backs that we had made it through his chemo without any big complications or trips to the ER.... until last Saturday. 
 
Tex had got bit or stung by something out in the yard, and it ended up getting infected.  Having happened when his immune system was at it's lowest point, he just couldn't fight off the venom or bacteria.  So his feel good week isn't so much a feel good week this time around.   After a  (surprisingly quick) trip to the ER and he came out with two antibiotics, a pretty drawing on his leg marking the infection boundary, and home care instructions.  He had started complaining about the bite the night before, and it was looking a bit infected, after the usual home care routines didn't help, and he started running a fever of 100.3º,  it was time to take it to the next step.

The ER physician considered admitting him, but decided to go the oral antibiotic route first, and see how he responds. It's looking a little bit better, his fever is mostly gone- just an occasional spike, but the infection is deep, and hurts.  We still need to keep an eye on him and see that it continues to respond to the antibiotics.  There is a chance if it doesn't clear up by the 28th, his last treatment will have to be postponed.  But we won't know until we get to the oncologist and see what his blood counts are and have the doctor look at it.

In the meantime, he's supposed to stay down with the leg elevated, and take it easy.  With how crappy he's feeling, that's not too hard to convince him to do.

The final stretch

When Chappy Tex got the news back in June that his lymphoma came back and had to go through chemo again, they set him up for 6 sessions.   This past week we had session 4.  We've made it past halfway mark. 

He had a PET scan last week.  The results are on par with the treatment.  They read the scan by the brightness (a contrast dye lights up the cancer cells) and number of locations of the cancer.  It was at about half as bright and half as many locations.  So it is working!!

We have sessions 5 and 6 next month (every 3 weeks).  Then another PET scan.  Then a consultation for the stem cell transplant, to see if that is an option. That will require some travel, and an overnight stay near the cancer treatment center.  If our insurance covers the consultation and transplant.   And a whole lot of praying in between.

The effects of the chemo are cumulative.  The side effects seem to be getting stronger with each session.  The food fight is lessening though.. he eats when he can, and he's not losing weight, so it's good enough.   Would I like to see him eat more nutritiously?  Of course.   But I'm gonna pick and choose my battles, and as long as he is eating SOMETHING, I'm happy.  There is nothing normal about meal times here now.  We eat when we can, and try to have a family meal in the evening.  Sometimes he'll be able to sit with us and eat, other times, he can't.  One thing that I've learned is to try not to take it personally if he doesn't eat what I fix.  Sometimes what smells divine to me while it cooks, can turn his stomach.  His taste buds are still affected as well.  Seems that vinegary, or spicy foods are the best flavors for him to tolerate right now.  Brothy soups are his "go to". Easy on his mouth and stomach, and very little cooking odor.

We've learned to embrace the week or so before his treatments, since he is feeling better.  He's able to sleep somewhat normal by then, and has a bit of his energy back. 

 Can't help but feel gratitude this morning.  Hope.   We can see the light at the end of the tunnel.  It's not over, and it very well may be that the greatest challenges lay ahead.  The transplant process is not easy for the recipient, and definitely not without risks.  And there's nothing saying a donor match will be available right away.  But with just one more month of the initial treatments - He'll be feeling better by the time the Holidays come around.

And the hits just keep on comin'....

Nothing can ever go easy.  I think it's an actual law of physics at this point.  Just as we're getting settled into the routine, something has to come along and mess with it.

This round of chemo went a little differently.  They are having a hard time getting one of the drugs on time.  So they started on the other 3 first, and then while we were there, they got the shipment they needed.  Thankfully.   But something about the change in order has made it a little harder on Tommy this time, nausea and fatigue is worse.

Wednesday, on our way in to get is Nulasta shot, we got rear ended.  It wasn't a bad wreck by any means, but it was one hell of a jolt. Especially since we were at a complete stop at a red light.   Tommy ended up getting a ride to the hospital from the local EMS -  the seat belt compressed against his port -  he was in agony.  And we needed to make sure the port and the vein didn't suffer any damage.  The X rays came back clear, thank God, no damage, no internal bleeding.   But it's still a whole new world of pain.

Both of us are still pretty dang sore though.  He's got the double whammy of the pain from the shot and the soreness and stiffness from the hit.  Thankful the guy that hit us has insurance -- more thankful that it's the same carrier I have - hoping that makes it easy enough.  

He's back at the doctor today with sore back, neck and headache. I know I'll have to make some time somewhere to go in, the twinges in my back aren't getting any better and the Alleve isn't working as good as it did the first couple days.  Now just to find the time to do that...

Another Round for the Birthday Boy!

Let's have another round for the birthday boy!

Used to be we'd say that for the weekend at a local dive bar..  not quite the same.  The 25th is Tommy's birthday - we'll be celebrating it with lab work and gearing up for chemo on Tuesday. (We are having a family celebration on the weekend too.. so there will be some fun).

I've been in terrible head space to write anything lately, but figured it was time for me to give it another go anyway.  Last treatment was postponed by a couple of days, doc said it was because of difficulty getting one of the drugs.  I think it was fate (and partly sneaky doctor).

There was a young kid -- 22 -- there for his first session, with worried Momma.  As the day wore on I finally had a chance to talk to worried Momma, and Tommy had a chance to talk to The Kid.  Come to find out, same type of cancer, same treatments, and we should be on the same schedule as them, I heard they were slated to come back next week as well.  It was good to have the fellowship with worried Momma, I hope I was able to ease some of her concerns and give her some advice that helped after his first treatment.

Doc came in late in the day and said he had hoped we'd have a chance to talk to one another - of course he couldn't tell either one of us what was going on with the other, but was hoping...  I had to laugh at that.  

This will be the third treatment out of the initial six that are planned -  half way through!  But it's starting to show on him now.  He's having a hard time sleeping and getting comfortable, but I did notice the lumps in his abdomen are gone to barely noticeable now, so it's working! The food fight is continuing but lessening; he's getting at least one good meal in a day and snacking through the night.  While he's lost a little bit of weight, his clothes are still fitting.  He's agreed that taking one of the nausea meds helps if he takes it before a meal. Smells are setting him off at times, we've learned that fish for dinner might sound good, but the smell is a no-no.  The mouth sores are still an issue, which makes soft food a must while they heal.  Soups are good,  even if it is 100+ outside here. At least I can pack a lot of veggies and nutrition into a soup.  I think he's had a touch of a chest cold the last week or so.  A slight fever at times is normal, so hard to say what is from the cough and what is from the chemo.  But he's not really felt like venturing out of the house as much as he was for awhile.  I suppose at least that keeps the exposure to the germs to a minimum.

Depression.  That has been the going word around the house for the last few weeks.  For him, for me, for my mom.  I know it's common --there's a lot of fear and anger with cancer.  But it's still not something to be taken lightly.  Add in the unsettled patterns for sleep and eating and generalized chaos that comes, it can get quite overwhelming at times. Best I know to do is  JUST.KEEP.DOING.  I won't lie -  there were about 3 days I did nothing but lay in bed and cry.  I realized, that wasn't helping me, and that certainly wasn't helping him.  That being said... there might be some that can't "snap themselves" out of the depression  -- I'm still depressed, I'm just forcing myself to, at the very least, go through the motions of the day.   If YOU or someone you know is facing depression-- no matter that cause, there are several groups that can help. 

For families of those with cancer, there are support groups available. American Cancer Society has several.  If your depression is not cancer related the Anxiety and Depression Association of America has support groups by TYPE of anxiety or depression.

That being said.... if you are EVER thinking of just ending it all. First of... please don't.  Consider what your loved ones will go through first. (If you're saying I have no loved ones, Bullshit, I love you, even if I don't *know* you, you are loved).  Second please call the suicide prevention lifeline
1-800-273-8255.  Depression is NOT weakness - it is a physical, chemical imbalance in the brain.  It is an illness just as much as a cold, or flu, or cancer.