December 9, 2017

February 13, 2018 in Lymphoma

I’m catching up, in a way. Another post that I’m copying from elsewhere:

All is well in our household. Hard to believe it’s been four years. I took the day off yesterday, as I do every year, and did some baking. I also got started on a couple Christmas gift projects.

I recently completed my office/library project.

The husband now has Jeff’s reloading room mostly to himself and is grateful for the space. I still have my sewing machine in there but there’s nowhere else to put it at the moment.

The kids are doing well, though Travis is currently fighting a cold. The girls are almost done with the fall semester at community college. Kristen is doing well at her job.

We’re fortunate to have our loved ones around us, food on the table, and a roof over our heads. This year has been rough for many. Hell, the little scuffles that broke out with the mere idea of a gas shortage after the hurricane (we’re in North Texas) made me remember that desperation can bring out the worst in people. Again, we’re fortunate we have our heads on straight!

Love to all!

Random Post

February 13, 2018 in Lymphoma

This is from September 2017 that I posted elsewhere:

Conversation in the hot tub this evening:
Me: Travis, do you have a girlfriend?
Travis: Well, I dunno
Me (totally knocked off guard because EVERY answer until now has been an immediate ‘no’): What do you mean you don’t know? What’s her name? Where does she live? Do you sit together? Do you hold hands? Does she say you’re her boyfriend? Is she funny? Is she nice?…..
Travis: Umm… Her name is Grace? She’s in my house? Umm…
Me: Wait. Travis, is she a friend who happens to be a girl?
Travis: Yeah, yeah.
Me: (WHEW!) Okay, bud. That’s good.

This mom is sooo not ready!

Houston or bust

September 16, 2013 in Lymphoma

We made it, with a little time to spare. This place, the whole campus, is absolutely HUGE!! Good thing I watched the directions video on MD Anderson’s website 🙂  In addition to MD Anderson, there is Texas Women’s University, St. Luke’s Hospital, Texas Children’s Hospital, Shriner’s Hospital for Children, a bunch of Baylor buildings, and the list goes on and on. I think it would be wise for us to take advantage of the complimentary shuttle from the hotel – I don’t dare try to figure out the parking.

Our schedule changed just a little bit. Jeff is scheduled for an EKG and chest x-ray on Wednesday, bone marrow biopsy (thankfully under sedation) and CT scan on Thursday, and another appointment with Dr. Hagemeister on Friday. (We get to go play at the beach tomorrow.) All this is to evaluate him for a clinical trial – MLN8237 Plus Romidepsin. Dr. Oommen believes there should be no reason he wouldn’t qualify for the trial, unless maybe Jeff has had a chemo drug which would exclude him. So, that’s the plan so far for the week.  We’ll see what Dr. Hagemeister says on Friday to see what happens next.

We checked in at home this evening and all is well. Grandma takes good care of those spoiled kids! We have also threatened the kids that they better be on their best behavior and help Grandma, or ELSE.

Oh, when I was online last night, I found out that September 15th is World Lymphoma Awareness Day http://en.wikipedia.org/wiki/World_Lymphoma_Awareness_Day. Read up and Know Your Nodes 🙂

Thank you all for the prayers and good wishes you’re sending. Back atcha! We feel so fortunate to have the incredible support system we have. Our friends, neighbors, family, doctors, bosses are invaluable.

Thank you.

April 19, 2013 in Lymphoma

It’s me Jeff.

I’m home and doing well. I can’t thank everybody enough for the love and support. It really warmed my heart.

It takes a lot to scare me and I’ll admit, I was scared to death. Driven to tears, emotional, and pretty upset. I was in a tremendous amount of pain the first few days, confused, and worried to death.

Everybody that saw me, talked to me, texted me did wonders. It’s incredible how I was able to gather all the love and support and fight back the fears.

I now feel safe, and in the end happy. Like I was wrapped in a warm blanket and held tight. All the doctors were so key in helping me understand I can beat this and will come out O.k. I feel very fortunate to work for TPCCC. I have seen another side of the doctors that I knew existed, but never saw first hand. To care that much and keep giving is a human trait I admire, look up to, and will always respect. Patient after patient they do this and they had so much for me when It was my turn. Thank you all. It’s an honor to know you all in another way.

My friends were key to making me feel loved and not alone.

I’m a much happier and better person because of this and y’all. I’ve found beauty in everybody and everything looks brighter and sweeter. I feel so safe, so comfortable, and so loved. The caring and prayers are so appreciated. Y’all really came through. I can’t thank you enough.

I’m tired and sore, and I feel really fat, and I know the Chemo sickness is coming, but I know I am not alone and that means so much. I don’t have to be alone in this and that means everything.

Again, thank you and I love all of you.

 

Jeff

Home again

April 19, 2013 in Lymphoma

We’re home! Thank you again to everyone who visited. Jeff knows he’s loved and it means everything to see familiar faces (and to show off and brag about the size of his tumor)! We’re already scheduled for lab work for the next two weeks and will see Dr. Oommen on May 1st. We’ll get the PET scan scheduled for next week.

Jeff is really stressed about how “fluffy” he is already with taking the Prednisone. I thought I was going to have to hurt him! I told him his weight will fluctuate just a bit over the coming months. There will be plenty of opportunity for weight loss. The goal is killing cancer, not losing weight right now.

We now need to watch for fever, stay away from crowds and sick people, and control nausea.

Visitors today: Dr. Burk, Dr. Gleason, Dr. Reddy.

One down!

April 18, 2013 in Lymphoma

First dose of chemo is done and Jeff did well! He had no nausea or ill effects, thanks to the pre-medication. They start the drugs – cyclophosphamide, hydroxydoxorubicin, and oncovin – one at a time. The hydroxydoxorubicin (aka red devil) is added last. That’s the doozy drug. Actually turns your pee red. He was told that though he feels okay now, he’ll feel the full effects and may get knocked on his butt in eight to ten days.

The next dose will be in three weeks. Two weeks after that he’ll get a CT to check for tumor shrinkage. If there is response, he’ll continue on this course of treatment. We’re looking at six to eight rounds, followed by radiation.

Jeff will be getting a juicer and we’ll be dreaming up all kinds of lovely concoctions to get rid of toxins and help his body recover from chemo.

This was a thankfully uneventful day 🙂

Visitors today: Dr. McDonald, Dr. Burk, Dr. Gleason, Dr. Suri, Carla Peveto, Robin Hall, Sondra Simpson

Graciously Receiving

April 17, 2013 in Lymphoma

Flowers from Office 1

Flowers from Office 1

You might have heard a doctor or two say that sleep is important to good health. If you ever want to test the theory, try to sleep in a hospital after getting Prednisone. It’s downright impossible. Jeff is still learning that he needs to listen to his nurses and just take the sleeping pill! He got very little sleep, if any, last night. When I got to his room this morning he was gone – taken for an echocardiogram to check his heart function (results show it’s good, but we all know he has a good heart). I suppose that also serves as a baseline so they have something to which they can compare once chemo starts. Some of the drugs can affect the heart. When he got back, he ate some lunch, got his scheduled dose of oxy-contin and finally got to sleep for a while.

Jeff mused that he is a fixer, but this is something he can’t fix. He must let the doctors fix him and “graciously receive” the help and love he needs and deserves. Everyone around him is so caring. The nurses on the floor just love him. I told my good friend, Misty, that they have no choice but to love him.

Melinda, Ginny, Prima, Jeff, Shelly (hiding), Mickie, Marissa, Laura

Melinda, Ginny, Prima, Jeff, Shelly (hiding), Mickie, Marissa, Laura

We got to talk to a very nice gentleman who has gone through an almost identical experience and is still going strong. I think we could have talked for hours. He is just very calming and real. He said he is actually a bit compulsive and would track the volume of his tumor. He could graph the tumor shrinkage, but at one point it stopped shrinking. He expected it to shrink to nothing but they found that what was left was a bundle of scar tissue. He has a “local guy” and an “Anderson guy” and went beyond the protocol a bit, getting extra chemotherapy. He said he lost weight but indulged in Braum’s shakes morning, noon and night 🙂 That got a thumbs-up from Jeff. We were just very grateful to get to spend some time with him.

Dr. Oommen stopped in this evening and said he is waiting on a gene study from the initial biopsy; those results should be available in another week. Of the B-cell subtype possibilities, there are Burkitt’s, double-hit, and diffuse large B-cell lymphoma. (I thought we had already established DLBCL, but we haven’t yet.) He said the cells are not staining like Burkitt’s but his KI score is 90-95% – in the Burkitt’s range. Dr. Oommen is proceeding with R-CHOP, the standard treatment for DLBCL, and if his kidneys are handling what is being thrown at them, Jeff may be able to go home Friday or Saturday. If he doesn’t respond well after another round, as judged by tumor shrinkage on CT scanning, he may change therapy to R-EPOCH. If the gene study shows Burkitt’s, the chemotherapy regimen becomes much more aggressive.

Visitors today: Dr. Gleason, Dr. McDonald, Dr. Burk, Carla and Haley Peveto, Nicky Crow, Pam McGlaun, Adam Alecknavage, Erica Mashburn, Ginny Durante, Melinda Rodriguez, Marissa Ramirez, Shelly Steinhilber, Mickie Mask, Laura Hernandez, Prima Reichert, Tammy Petermeier, Tricia Sharp, Kaye and Kim Hutchison, Teresa Bingham.

Some late-night reading:
http://www.cancer.net/cancer-types/lymphoma-non-hodgkin/subtypes
http://chemoregimen.com/Lymphoma-c-44-55.html#Aggressive

Deep breath…

April 16, 2013 in Lymphoma

Going in to surgery

Loopy Jeff going to surgery

Jeff had a really good night’s sleep. He was up roaming the halls when I got to the hospital this morning. On the agenda today was a bone marrow biopsy and the port-a-cath placement. Dr. Oommen says he has Diffuse Large B-Cell Lymphoma (DLBCL), but there are subtypes. Further examination is being done of the biopsy material from last Friday to determine the subtype which will further direct his chemotherapy.

Interestingly, they did the bone marrow biopsy in his room. Jeff lay on his side facing me, while the doctor poked and pushed on the back side of his right hip. This is a very painful procedure – for the patient and for the poor sap holding the patient’s hand. Yes, there was pre-medication to help him relax, and local anesthesia, but it doesn’t get to the bone itself. Jeff could swear the doctor had his feet braced on the wall in order to push/drill into his bone. There were a few times Jeff’s eyes widened like he was about to explode, but he was a trooper. (Deeeep breaths) A wise doctor (Dr. Burk) advised that IF it needs to be done again we should give the pre-meds a good chance to take effect before the doctor starts the procedure. Noted! Those meds made Jeff sleep for quite a while after the procedure was done.

Flowers from Sondra

Flowers from Sondra

Next on the agenda was the port-a-cath. Jeff was still pretty loopy from the pre-meds when they came to get him for the surgery. They have a pretty neat surgery organization. I was given Jeff’s surgical case number and shown the monitors in the surgery waiting room. They list each surgical case (by number) – kind of like flights at the airport or the Dominos pizza tracker. The surgery tracker tells you the stage of the case, like “in pre-op”, “case started”, “closing”, etc. At one point I was waiting for Jeff’s case number to cycle to the screen when Dr. Birbari popped up beside me to tell me he was done. All went smoothly and he has a new accessory.

Power port - nothing low-tech for this guy!

Power port – nothing low-tech for this guy!

Jeff was THIRSTY and hungry so he got fed and chatted with visitors. On talking with him on the phone tonight, he said Dr. Oommen is starting Rituxan tonight. This is the first of the chemotherapy “cocktail”. He said we should know the subtype by Friday and should know the bone marrow biopsy results by Thursday or Friday. The “real” chemotherapy will probably not start until all those results are back, and then another 7 days or so in the hospital 🙁

Visitors today: Kristi Fugate, Dzu Dao, Brenda Pender, Sondra Simpson, Dr. Watenpaugh, Dr. Suri, Dr. Burk, Dr. Gleason, Dr. McDonald

http://www.powerportadvantage.com/clinicians.html

Run with it

April 15, 2013 in Lymphoma

Walking pin cushion

Walking pin cushion

Blow-out

Blow-out

The docs confirmed that it is lymphoma. The final results as to which type of lymphoma are not in yet. Regardless, we’re off and running – he got a CT scan of the chest and neck which is clear – no tumor there. The PET scan was declined by the hospital so we’ll have to get that done after he is discharged. Bone marrow biopsy will be done and chemotherapy port will be placed tomorrow. The first round of chemo will be done in the hospital, but MAYBE he’ll get to go home by the end of the week. (Fingers crossed.)

He pooped today! I told him he needs the t-shirt 🙂 At least that is not causing him discomfort now. His fever went up to 103.7 at one point. Dr. Oommen and others say fever is not uncommon with lymphoma and not to be too alarmed. He got another unit of blood today. His hemoglobin was 8.2 this morning but 7.8 later.

If only Jeff could get some sleep. I have a good feeling tonight will be the night he finally does.

Visitors today: Dr. Steven Davis, Dr. Tim Schroeder, Carla Peveto, Darren Trainer, June Pollard, Ayesha Ratliff, Dr. John Burk, Dr. Kuppinger

Still Waiting

April 14, 2013 in Lymphoma

Flowers from Jeanine Rougier - most aromatic flowers I have ever smelled! Unfortunately, I didn't get a pic of them when they were fresh but they're still fragrant.

Flowers from Jeanine Rougier – most aromatic flowers I have ever smelled! Unfortunately, I didn’t get a pic of them when they were fresh but they’re still fragrant.

Another rough night, but Jeff got a couple hours of sleep. He’s still having lots of back pain, little belly pain. Hemoglobin is up to 7.5; getting another unit of blood today.

Denise came by to visit and brought goodies. She gave Jeff a much-needed hair cut. He wants to be presentable for his big news tomorrow.

He is afraid to eat until his bowels move and the pain meds are just helping to stall things. Dr. Aitelli ordered some longer acting pain meds – oxy-contin, and “liquid dynamite”.

We were encouraged by Dr. Cheryl McDonald who said that if the preliminary pathology result shows lymphoma, that is what we are dealing with. It won’t be a question of whether it is sarcoma or lymphoma, because the cells are so different. We are just waiting to see what kind of lymphoma it is and then put a plan in place. He will probably get a port for chemotherapy soon. I’m guessing a PET scan is also in the future. Again, answers will come tomorrow.

Visitors today: Denise Boyd, Dr. Luat Nguyen and Jeanine Rougier, James Cobb, Dr. Cunningham, Dr. Cheryl McDonald, Dr. Suri, Dr. Watenpaugh, Dr. Seiden, Dr. Stuart McDonald