Finally an update

It's been way too long. Life has been way too crazy.  Here's what we last found out.

He's responding to treatments - there is a reduction in the size of the tumors in the lymphnodes, based on the CT scan done to date.  He has another one scheduled the first week of December.

December 14th will be the last treatment in the study at MD Anderson, and his last infusion of the ublituximab - that being said, he will continue on the trial medication afterward- 

The Dr. at MD Anderson says he expects to see remission some time around April.  He'll have a PET scan done sometime around then. 

All the treatments and drugs he's been on has caused some other side effects.  He's dealing with hormonal imbalances now, and trying to get the doctors and insurance to understand that it is affecting his quality of life in all aspects has proven difficult.  He isn't sleeping well, and that is a direct result of the hormones being out of whack.  It's the little nuances that cancer and treatments affect that are proving to be the difficult parts to handle and treat.

With the medications, and lack of sleep his cognitive abilities continue to be an issue.  We were released from the neurology section of MD Anderson with them saying there wasn't anything they could do about it.  Wasn't expecting a team of that caliber to basically say "suck it up buttercup" without anything more being offered.  Disappointed yet again.

However a lot to be thankful for this year -  the treatments are working.   His results have been included in many different presentations to the worldwide onocological stage.  Now to just get through the next one and get a handle on the different side effects.

Happy Thanksgiving and Merry Christmas!

The Battle Continues

It's been over a year now since we first started the testing routine again, and found out that Tex's lymphoma had returned.

Shortly after 4th of July he had started chemo up again.  It's been a year.  A really, really long year. Too many blood draws, and tests, and scans, and port being accessed, and hospitalizations. Battles with reactions to bug bites, and months of bronchitis and pneumonia, and reactions to medications....

In my purse, I have the CD of the latest CT scan.

... and can't do anything about getting the results until he goes back to MD Anderson on Monday.

He's gone through 6 months of aggressive chemotherapy which stopped working about half way through. And now 6 months of trial immunotherapies; which has shown improvement on the last scan 3 months ago.

 So now we're back to waiting.  His treatment routine changes up after this infusion on the 29th, He won't have another infusion until September. So we'll really get to see if the daily pills are working, or if the infusion is doing all the work.

One thing we found out, which was not explained to us at the start, this is a life long medication to keep the cancer cells in check.  The only way he would stop taking this, is if they do decide to do the stem cell transplant.  Which is still on the table, once he reaches remission.

There's a billion scenarios running through my head.  .... when he reaches remission.  Maybe he has.  He feels better for the most part.  There's still days, sometimes several in a row, that he stays down.  He's still anemic, we know that much from the blood work.  What if he hasn't?  Has this treatment stopped working too? What do we do then? I know there are more trial options...what if his insurance starts saying no....

And then, once I've worked myself into a tizzy with all the what ifs.... and now whats..... I remember.  Just for now.  Just for right now, this is where we are.  We've battled a year and if we have to, we'll battle another year.  And another, and as many as it takes to kick this cancer's ass.

Catching up...

It's been a whirlwind since we started the trial.  I can't say my opinion of MD Anderson has improved much.  After two conversations with the lady that handles the insurance approvals and referrals there, and hearing how much work it is processing our paperwork... I went off on her.  She's been a little more responsive since, but not much.  The trips to Houston have become almost routine. We keep our suitcase packed with what we'll need for the trip, have bought our own little coffee pot and bring decent coffee with us.  Packing up the car, unpacking when we get there- it's all on autopilot now -- even have a favorite diner to stop at for a bite on the way.

Tex is doing well on the study.  We've had to fight every step of the way though.  He had an unexpected -- and opposite -- reaction to the infusions than anyone else on the study.   He didn't have any kind of anaphylactic shock that we were worried about with it having the mouse DNA, but his blood pressure did spike to dangerous levels.  And trying to get them to understand this is NOT OK to just let happen and deal with the fallout then.. but to be proactive and prepare for it has been an uphill battle.  Even at this point going into the end of the 2nd cycle, they have not completed the notes so the nurses know what to deal with, and it's always an issue trying to get him into a room where he can be properly monitored.  Now at this point, they anxiety of having to deal with them is enough to increase his (and my) blood pressure!  They did finally adjust the infusion rate and the last two infusions went better, there was still a spike but not to the point he needed intervention.

Overall, the biggest toll seems to be on his cognitive abilities.  We did see a neurologist.  He's having a hard time with "chemo-brain" and coming up with the words to communicate his thoughts.  Says sometimes they are just there.. but they can't come out of his mouth, or don't come out right - other times the word is just gone completely.  This could be partly from the medications he is taking for the pain - and she thought maybe some sleep deprivation, too; so we're going to be working on a better way to keep a schedule, some light chores to do, and see if that helps with the sleep patterns.

We did get GOOD news on the CT scan that was done - the lymph nodes in his chest/abdomen are shrinking!  His blood work continues to look good, and we'll continue on the trial.  The schedule is easier now, infusion only once every 2 months, and continue on his daily chemo pills. We'll still need to go to Houston once a month to renew medications and do blood work, but overall an easier schedule that will hopefully let him build his strength back up again.

With the exception of getting bronchitis, he does seem to be feeling better overall.  The food battle continues.  He'll still go days without eating but the doctors say as long as he keeps hydrated it's ok.  He seems happy to have lost about 10 lbs, I'm less than enthused about it.  His doc at MD Anderson also wasn't pleased.  The goal now is to keep him from losing anymore weight, he'll need everything he has for the stem cell transplant.

There's no word yet on when that will be; have to get him into remission first.  Doc at MD Anderson says they usually see that between 6 and 9 months; we're in month 4 now. By God's grace he'll be in remission by the holidays this year!










 

Into the swing of things

It's been awhile since I've updated.... been busy dealing with MD Anderson and their screwy way of doing things, if they can make it the most difficult way possible, they will -- and then try to one up themselves.

After months and months of run around with insurance and getting all the ducks in a row, Tex did start on the study drugs last week.    We've committed to weekly visits to Houston for the next year-ish. 

He is 3 weeks on infusion and one week off.  Plus a daily trial  chemo pill that he takes at home.  So far, he seems to be tolerating them well.   He has had a couple of really down days, but can't say that it has been any worse than when he wasn't getting any treatment.  It's still early so we'll be playing the waiting game for awhile -  part of the down side to doing the studies -- you get to have the side effects and then let them know what's happened.

These drugs have already been tested, and there is substantial information about them in scholarly papers and from what has already been found there are very minimal side effects.  I am cautiously hopeful that this will continue to be a gentler treatment and take care of the cancer once and for all.

Time to get the bags packed and ready for another journey to Houston.  His 2nd infusion is tomorrow morning.

Keep praying! 

Follow Up at MD Anderson and the Holly Daze

We finally did get the debacle at MD Anderson straightened out.  And they were falling all over themselves with apologies.  That's fine and good, but it still meant another trip there.

We drove down on Monday, and had a day of tests and doctor appointments.  Received some good news too!


They had performed their own tests on the sample taken for biopsy in June.  The results from that in conjuction with the PET scan done in November indicate there is NO DLBCL, contrary to what we had been told for the last few months!

That's fantastic news. 

There still is the follicular lymphoma which has become unresponsive to current treatments, however there are several studies and trials happening that the doctor has submitted the information to.

After the new year we will go back and find out what treatment plan he has come up with and which study we will participate in.

In the meantime, he said he doesn't believer Tex to be in any immediate danger.  He'll feel like crap (and he does), but as soon as we hear back from the studies, we'll head back to MD Anderson for testing and start on the treatments.

We had a fantastic Holiday at our house.  Tex and I got engaged on Christmas Eve!  We are both so excited and happy.  A house full of nieces, kids and grandkids made for a very jolly holiday.

We'll update with wedding planning as it comes about - we're not in any rush, and want to see what this next round of treatments has in store for us!

Wishing you all health and happiness in the New Year!

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.

THE RED DEVIL

THE RED DEVIL

I hate cliches and except in movies, I have never heard any Fire Fighter use the the term. Well in Chemo it has some lovely side effects. When the nurse mentioned it I had to laugh inside as I sat there wearing a FD t-shirt...(ask FF Girl, I only wear FD shirts). I have heard Jobs, Workers, 10-75s and a few other names for fires, but what the hell is this Red Devil? The name of the drug is Adriamycin that is bright red in color and is delivered into the port in my chest by this horse size syringe that has to be administered slowly as not to cause heart damage. As she was prepping this, she covered me with a large pad. Inquiring minds want to know, so I asked why? Her response "If this gets on your skin it will burn". Wait...what? You are putting this into the main line to my heart and it is ok? I have been in a few fires that scared the crap out of me but this blew my mind. Well the side effects (which the first nurse failed to mention) include your urine turning bright red. Wellllll..this is one guy that sees bright red urine and gets worried. Thank God we had the notes on the meds I get and we read the side effects. Hopefully this gives you some insight into the RED DEVIL. As always..Never Give up, Never Give In  and Never Forget.....Da Chappy

Food Fight

I come from a "foodie family".  Food is love - Mom always had a good breakfast ready for us kids before school, and a warm dinner for the family in the evening.


Tommy's family on his mom's side is Italian -- if they are feeding you, they are loving you.

For those that don't have these backgrounds or a passion for cooking and creating it is hard to understand that feeling of satisfaction and completion when you present your loved ones with a good nourishing meal, and how a part of your heart goes into it.

One of the side effects of the chemotherapy is altering the way food tastes.  For a former chef like Tommy, that could be likened to maiming the hand of a master pianist.  The loss is terrible.  Some lose the ability to taste at all, others the taste is metallic, or things just don't "taste right".  It's an itch you just can't scratch when craving comfort foods and favorites.

Tommy's sense of taste has started to become altered. Metal utensils leave a metallic taste in his mouth, so we've now switched to all plastic ware. (Bonus.... fewer dishes to wash!)  The down side... I had to endure a series of  "does this taste like it's gone bad/stale" episodes.  That was a lose/lose situation there, and I have now adopted a "when in doubt, throw it out" stance. 

However, this brings the problem of getting enough nutrition in him.  Along with the not feeling good, and nausea, the food just doesn't taste right.  So there is a disappointment in the expectations and cravings that just can't be met right now.  Additionally, there are the mouth sores to deal with.  The chemo doesn't just attack the bad cancer cells; it also goes after the good cells too, and usually the lining of the mouth, esophagus and stomach take the first rounds of hits. 

Now I am NOT a nutritionist,  and won't even start with the claim that if you eat the right foods, in the right orders with the stars aligned the right way you will cure your cancer without treatment.  In my opinion, that's just foolish, dangerous and deadly. And don't even get me started on the dangerous- to- manufacture hemp oil magic elixir without some concrete, scientifically proven results.

 HOWEVER, the body needs more nutrition and more proteins to fight off the cancer, and heal against the unwanted effects of the chemo.  My goal is to be able to help him maintain a certain amount of nutrients, minimize the weight loss, and keep him feeling as strong as he can during treatment.  Food is fuel, and this fight takes a lot of fueling.

Speaking of fights.. our days usually go like this.

Me: "Have you eaten"
Him:  "No"  or "I'm not hungry"
Me:  "I didn't ask if you were hungry, you're going to eat anyway".

At which point he either gives in, or I give up for a few hours and we repeat the process. Smoothies, as long as they aren't too acidic, have been a great way to get good nutrition and calories in him when he has no appetite.  I also found a protein powder at a health food store  I can sneak into the  smoothie without him noticing.  (Shh, honey don't read that part). 

The problem remains that what tastes good to the unaltered palate,  might not work for the one affected by the chemo. Since flavors have been dulled to him, he usually piles on jalapenos and hot sauce. (We now buy each by the vat.)

There has been a good book I've found recipes that sound (and what we have tried are) tasty, and are broken down in a way you can tell if it is good for a nauseated day, or a sore mouth day, if they need more or less fiber, things that are high protein, and nutrient dense.  The book  The Cancer Fighting Kitchen has been a go-to for me for ideas, even if I don't have all the ingredients on hand, I can still switch things around enough that it tastes good to all of us.
 
I was told even if he didn't feel like eating - one or two bites of something - anything- every few hours is a good thing right now.  It can be applesauce, pudding, a part of a sandwich, what ever he will just take 2 bites out of.  And that is enough for now. 


~~FF's girl 

Here we go.... again

Remission - the word you really want to hear.   But there always seems to be the elephant in the room during remission - constantly on the look out for any signs or symptoms that it could be coming back.  Which is what happened.  After 2 years of remission - Tommy started showing some symptoms.   Night sweats, bleeding easily, and getting fatigued really easily.  That was the trifecta - time to get checked out. 

After endless appointments and tests, CT Scans, Pet Scans, blown out veins from blood draws,  hospital stay, a lymph node removal for biopsy --  we finally got the verdict.    Stage 4, grade 3 lymphoma... it was back.. and at the same point it was last time around.  After 2 years in remission, it was back full force.  I had thought we had caught it early -- I had thought we were being so vigilant...  Then there came all the words... chemo, hair loss, transplant doctors....  that's the point I got stuck.. more on that in a minute.

So we start another round of chemotherapy. That's not being said flippantly.   This is a more aggressive treatment this time around.  Thankfully, one of the chemo drugs used last time as part of a trial, is now FDA approved, and that is one of 4 that is in this go around. Plus the god-forsaken Nuelasta shot. 

More aggressive is going to mean more side effects. Having already been surprised by one -- would be nice if the doctors or nurses tell you things like "Your pee is going to be blood red for a day... don't panic."    He's already completed the first round of chemo, and it was broken into 2 visits -- this is done to reduce the possible reactions.  From here on out it will be one visit every 3 weeks, plus a return trip the next day for the Nuelasta shot.   For at least the next 6 months.

After that we need to discuss the options for the stem cell transplant.  On one hand, amazing what they can do for treatment now a days.  He will effectively take on the immune system of the donor.  We're hoping his brother is a match, but there is a 1 in 4 chance he will be.  If he doesn't match, then we go to the donor bank.   This is, the doctor said, the best shot at a cure.  We can get him back into remission without this, but this is a CURE.  However, it doesn't come with out some pretty serious risks.    There's many prayers to be made between now and then, and please, send prayers to us for guidance on the right path!

There was some good news!   He had to have a heart scan done to make sure his heart could handle one of the drugs.  There was a nearly 50% improvement in his heart function from the last time!  Guess there might be something to that eating healthy and being active stuff the doctors preach after all!  Hoping him starting from a healthier place this time around will help in the long run. 

More to come.  Next appointments are in the beginning of August.   We should start seeing hair loss sometime next week.  (I'm vainly hoping it will spare the legendary mustache!)  Don't matter in the long run... as long as I get to give him kisses, mustache or not, it'll be OK.


~~  FF'sGirl ~~

You Never Forget

We all wish we had not seen some of the thing we did; whether you were on a Paid or Volly Department .   I also had the "pleasure" of seeing an infusion room more than I wanted.  Two years cancer free and today, while accompanying a family member to a doctor's appointment, I saw my first infusion room since that time. 

Wow.

Same recliners, same looking I.V. poles.  I was OK for a bit, then they started to hang the I.V. bags and that was it.  All the memories of being in that room  flooded back.  I saw what I saw so many times before; folks getting hooked up.  Then I realized what was different.. what was bothering me.?

I wasn't in there.

I wasn't talking to the other patients.  I was not giving words of encouragement.  I failed as a FF/EMT/Chappy.  I let those people down.  I should have gone and talked to them.  Reassured them that you can win against whatever disease you are fighting. 

When I got home, I needed to think this out and ask myself a few questions.

Out to the "Man Cave" -- surrounded by fire trucks, tools, books, and patches. (I love to look at them since they belong to some friends and past departments I was in).

I was in my comfort zone.  I looked around and my eyes focused on the "Flag of Honor" - right to the name I've looked at so many times before.  Paul A Tegtmeier.  Fellow FF, mentor and friend to both myself and my mother.  Then I thought ..... thought hard.

What would Paul have told me?  Sitting outside in the country, listening ot the birds, looking at nature... my garden & flowers.  It's all very comforting and the perfect place to just sit and think.

"Do what you do best.  Be there for people.  You have seen the victims at MVAs, the cardios and the infusion rooms.  Get in there and do your job."

One other thing I keep in my cave is a set of rosary beads that belonged to my Pops.  I prayed the Rosary and asked the Lord for forgiveness for not doing my job.  I sat for awhile and then I felt it.  Rain on my face.  Rain, the giver of life that washes away everything so it is clean and fresh.

Lord, thank you for opening my eyes to what I need to do.  First I need to reconnect with those that I talked to in the past.   I have most of your phone numbers- but lost a few when my cell phone crashed, but please email me (tomharkins63@yahoo.com) with your number.

Second, I need to follow my own advice.  "Never give up, never given in and never forget!!"

For my friends, FD, PD, EMS and LEOs- my the Lord hold you close and protect you.  Please remember those that are hurting both mentally and physically and grant them serenity and peace.

Best Regards -
   Chappy Tex (Tommy)

Opening Prayer for Texas Firewalkers 9/11 Memorial Stairclimb

September 8, 2013

Welcome everyone -- so wonderful to have such a great turn out for the Texas FireWalkers memorial stair climb. For those that do not know me, My name is Tom Harkins, I was a Volly in NY and here in  Texas. I have now dedicated my life to the Chaplaincy with the Texas Firewalkers,I am here for you. And a big thank you to Pee Wee for giving me this opportunity.

We gather today to honor those gave their lives so that others may live on September 11, 2001, and this year we also carry ,February 18, 2013 in Bryan, Tx,  April 17, 2013 in West, TX, May 31 in Houston, and June 30th in Yarnell AZ in our hearts.

In Romans 5:3, it reads:  

    rejoice in sufferings, knowing that suffering produces endurance, and endurance, character, and character, hope. And hope does not disappoint, because the love of God  has been poured out in our hearts through the Holy Spirit who was given to us.

   

I believe this passage sums up today to a Tee. Let us today rejoice in our sufferings.  Let us carry in our hearts the courage, and character of those we honor, and in doing so, let us feel the hope of the future.   

This is not a race , but a time of reflection on those lost.  A time to honor bravery and sacrifice.  A time to lift up and carry and hold close the friends and families of those that have given their all.  A time to share a message of endurance, and character and most importantly hope for the loved ones of the fallen.

Capt.Patrick Brown FDNY 3 Truck once  said "When the public needs help they call us, when we need help all we have is each other".  And while the path of grief is a personal one, we are proof here today the Brotherhood is still alive. That no matter how near or far, we are but one family, and we all do grieve the losses of our brothers and sisters.  

We thank the Lord for giving us these amazing men and women, and ask for continued blessings for their families, so they know they are not walking through this grief alone.I leave you wit the prayer of Fr Mychal Judge “  Lord take me where you want me to go, let me meet who you want me to meet, tell me what you want me to say, and keep me out of your way”

Let us pray:

Heavenly Father, thank you for allowing us to all be here today to give tribute to those we have lost on September 11, 2001 in New York, and all the other LODD’S across our great country.   

We ask that you bless the bodies of those about to climb and be with them every step of the physical, mental and emotional journey on which they are about to embark.

We ask that you continue to surround the families and friends of those that have entered your eternal kingdom with your unwavering love and comfort, and let their hearts be lighter for the shared sorrow we endure.

Please stay with and help lead the way for those that are fighting disease and cancer, and bless their families with the support, courage and love that will guide them through the fight. I know, Lord, that when the hours seem the darkest, your light shines the brightest, and we pray they will find strength in your light.

And I ask that you stay with all of us today, as we go forth from here. Bless us Oh Lord, and let us carry your love and strength through today, and into all of our tomorrows.

In Jesus name we pray,

Amen

© 2013 FirefighterBattlesCancer.blogspot.com, Tom Harkins, Gina Arnold

No part of this publication in part or in whole may be used without the express written permission of the authors/owners.

Missing you my neglected friends!

It has been WAY too long since we've posted an update here -- and I can't apologize enough! Tommy is in his 2nd year of remission and we continue to pray the cancer is gone for good. We're both back at work full time (and then some) now. 

Tommy has also continued his studies and is working on becoming a (non-denominational) Chaplain. I'm so very proud of him and his work to give back all the support and love he received during his cancer treatments. He has found this is a good platform, not only to spread the good word, but also to share experiences, and help the Brothers cope in especially difficult times.

 We're making plans for another milestone... His 50th birthday. Where better for the Chappie than Sin City? Wish us luck!

 Sept 8, Tommy will be leading the prayer for the Central Texas 9/11 Memorial Stair climb in Austin. The Memorial will also be honoring those lost in the West, TX explosion earlier this year. Our hearts and prayers continue to go out to the family and friends of those lost, as well as the community of West as a whole. More information on the Texas FireWalker's Page .  Tommy's son will be participating in the stair climb this year as well.   We encourage you all to come out and show your support.

Our hearts were broken at the news of the 19 firefighter deaths in Prescott, AZ at the Yarnell Fire.  An unbelievable tragedy, and send our deepest sympathies to the families, friends and communities of those lost.

As of this writing, there have already been 63 LODD's  this year in the fire service across the United States. It has been a terribly tragic year for the fire service.  Hoping the rest of the year is safer, and we don't see any more increase in that number.

Hold your loved ones close.

Video- Firefighter Cancer Support Network 2013

Hope....

“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” – Orison Swett Marden

Tommy had his six month and things are continuing to look good, lymph nodes smaller, white blood cell counts in the low normal range.  He is still in remission!  Praying the good news continues!

Couple events that have happened recently got me to thinking about hope.  One is Tommy’s dr. telling him that while he’s in remission now, recurrence from this particular cancer, as with any, is possible.  Which, we know, but it was something about it that just struck an ominous chord with me; it felt very defeating – like a rug pulled out from underneath us.  And while the doctor tried to be reassuring, noting all the new and different treatments out there, it still left the question of not if, but when.  It took away a good portion of the hope that life will become normalized sooner or later.  That nuclear scans and the endless poking and prodding will eventually be a thing of the past, let alone the hours in the infusion chair.  Hope that the bone pain, nausea and other side effects from chemo will never have to be considered again seems to unlikely.

Psychologically, this has done a number on both of us. Physically, the ongoing stress of work and then getting knocked upside the head with this news has made Tommy literally sick. The only answers I can give him, is the fear is normal, the wondering if it’s coming back is normal.  But even in remission, especially with the low white blood cells to fight off the infections, you are going to get colds and stomach flu’s.  While vigilance for the signs is important, it is also necessary to keep perspective.

Right now, instead of focusing on the “when” and the “ifs” a perspective change and looking at the positive will go a long, long way.   The good news is he’s in remission. 

And we can start moving forward with our tomorrows that we are dreaming about, and all the positives that is being mapped out in our lives.

Hope is very powerful-- sometimes it is all a person has. We will still cling to the hope we have – that the cancer is gone, and it will stay gone.  

“Let your hopes, not your hurts, shape your future.” – Robert H. Schuller