Wednesday, August 11, 2010

Sixth Cycle Is Finished.

(My favorite Hawaiian flower, plumeria. They smell like Heaven).

I'm home. I'm so glad to be here! They are wonderful to me at the hospital, but it's true that there is no place like home. I was there 3 days, but it feels like I've been gone for a week.

Josh and his family were just pulling into the driveway when I got home, so I got to see all of them. I talked to Kelly, who took care of my dogs, the cat, her Gran and my house while I was gone. Ron and both of my sisters called me this evening, and Josh just came back and brought me some barbecued chicken he grilled. They are all so sweet, and life is good. :o)

I've been moved from the cancer side of things to the bone marrow transplant unit at Wilford Hall, with a new set of doctors, a different clinic, and some different nurses and techs. The regular chemotherapy regimen is finished, but there will be more chemo with the stem cell transplant. Please keep praying for me. I'm more stressed about the transplant stuff than I was about the first six rounds of chemo. Thanks!

They did a lot while I was in the hospital this time. I got the central line implanted in my chest on Monday. It's BIG! They did what they called "tunneling," which means it's kind of backed up to my neck under the skin. Looks weird. Then there are two "nozzles" coming out on the left side of my upper chest. It's on the same side as my PICC line. I have 4 lines they can use for various things. I feel like a Cyborg. They will use the central line to harvest my stem cells. They said the reason it has to be so large is so that none of the cells will be damaged going through the line. There is some redness today around the central line, so they have me on antibiotics in case of infection. It's a bit itchy, too.

They started chemo Monday afternoon. It was 4 cycles of Ara-C, 1 of Rituxan and some kind of steroid that I've forgotten the name of. They finished the 4th cycle of Ara-C this morning from about midnight to 4 AM. I slept through the last cycle. :o)

The dentist came to visit me to take a look at my broken molar. He decided that it could wait until after my entire treatment is finished. I'm glad to hear that.

I had a breathing test at the pulmonary clinic. I have huge lung capacity for an old lady--the guy who did the test was very impressed. :o) I credit that to never having smoked. I have good, healthy lungs.

I had an EKG, a chest X-Ray, and a mammogram. They were not able to get me in for the MUGA scan and told me to call Nuclear Medicine at BAMC. I did, but they can't do it until August 19, and that's a day after I'm supposed to start the stem cell harvest. That won't do, so I'll have to get my doctor to call them and get me in sooner. Bother.

I have to go back on Friday for labs, a dressing change and so that they can look at my central line to be sure there is no infection. I'll see one of the transplant docs then, too.

I'll start the Neupogen shots (2X a day) tomorrow and will continue them through the stem cell harvest period. There are other meds I take from days 5 through the 15th to keep me from getting side effects from the chemo (I get those after every chemo treatment). Plus the antibiotic for the central line, nausea meds as needed, and eye drops to protect my eyes. It's a lot to remember, along with my usual diabetes and thyroid meds!

I didn't see the social worker or clinical coordinator, but I don't think they are important (don't tell them I said that). I talked to one of them today for a few minutes, and she said we could get together any time during the stem cell transplant procedure.

I'll go in on August 17 for Rituxan therapy (another chemo). Then the next day I'll start the stem cell harvest procedure. It takes 4 hours, and can take from one to three days, depending on how many stem cells they can recover. I'm not looking forward to this procedure. They said my family can be with me for it. Ron will still be out of town, but Kelly and Josh are going to be with me. They said we can watch movies, have snacks, etc. They try to make it sound like fun, but I've read what can happen and it's kind of scary. I don't ever believe them any more when they tell me something is quick and easy. It never is.

I still don't have a date for the deep chemo that will be done in the hospital for 6 days. The doctor will tell me, probably next week.

It seems like things are happening really quickly now. I'm excited that my treatment will soon be over, anxious about the procedures, and hopeful that all of this will have excellent results.

If this treatment cures me of mantle cell lymphoma, I will consider it a miracle. The transplant doctors said that mantle cell almost always comes back because some of the cells are slow growing and cannot be targeted by the chemo. Mantle cell is one of the rare forms of lymphoma. Only about 6% of lymphoma patients have it, and only about 2% of those are women; men usually get it. So I am a rare lymphoma patient with little chance of a complete cure. Most mantle cell patients have a recurrence of the disease within 5 years or so.

But my doctors tell me that I have had an excellent response, that I'm doing really well, and they are hopeful. I am even more hopeful, because I know the power of faith and prayer. I have had so many wonderful people praying for me, I have used my Lourdes water, I've said Novenas to many saints, and Jesus is right here with me, holding me close no matter what happens.

Thank you again for your thoughts, love and prayers. I can't begin to express what it means to me.

Sorry, I know some of this is repetition. I guess I'm trying to get it all straight in my head. ;o)


aine said...

We are so glad that you are home!

Angela M. said...

Kalona, my brave friend - I am off to pray a Rosary and the Divine Mercy chaplet for you. Thanks for updating us - be assured of continued prayers and I will be offering up my Holy Communions for you for the next few months.

God bless you and I am sending BIG hugs!
Angie xo word verification is 'bug lab' ! - makes me think of something Reece might like!

Anonymous said...

Hi! I'm so thankful for your blog - wow, things are happening fast now - I'm right there with praying for you and all those taking care of you. Sister Hugs and all my love, Sandi

Kalona said...

aine, thank you! Please tell my little prayer warrior how much her prayers are helping me. And of course, your's too. Thank you!

Angela, I hardly know how to thank you for all your prayers and intentions for me--you've been so faithful. Thank you from the bottom of my heart for everything, including the hugs! That's so cute that you thought of Reece when you saw your word verification. You're right, "bug lab" is something he would like. :o)

Sandi, I never doubt your constant prayers for one second. I love you so much. It was good talking to you yesterday evening!

Sarah Oldham said...

Yes, you are being so brave! Every time I go to Mass, I will offer it up for your intentions! I will continue to say the chaplet for you (as well as another of my friends who has a happy concern, but she's afraid) each day.
Love and hugs and loads of ALOHA,
Sarah and family

Kori said...

So happy you are home! We love you!

Kalona said...

Thank you Sarah, for offering your Masses for me, and for the Chaplets! I appreciate it so much.

Kori, I love you, too. Give our Jonah a big hug for me! Hope your pregnancy is going well. You and baby are in my prayers.

Adrienne said...

All my Masses will be offered up for you. I feel so bad for complaining about little things when you are going through this.

And don't forget the cyber death rays coming your way. Bzzzzzzzzzzz, bzzzzzzzzzzzzz...

Kalona said...

Adrienne, with so many Masses being offered for me, and all those cyber death rays, I am bound to get well. Thank you! :o)

Jennifer Mulkey said...

Will be offering Masses here for you also. You are going through things now that I had no experience with. What we do have in common still, is that I know that any day my cancer could return. There is no guarantee. But I've had the most wonderful three years. I've had three years to watch my grandchildren grow. Three years to experience the deaths of favorite aunts and uncles and to be there for my mom through all of that. Three years to show my mom how much I love her. Three years to show Tom how much he means to me, and to help him through his heart attack, to be there for him like he was there for me.

So yes, the cancer could come back. But I've had three wonderful years.

We learn to celebrate the little victories, the little anniversaries. One week, one month, six months, 8 months, one year. And they are all precious. You will never again wake up without saying thank you when your eyes open, we all do. You won't sweat the small stuff anymore, because after cancer, it's mostly all small stuff ;) You will throw caution to the wind and eat those things that might put on an extra 1/8 pound, lol, yes, the pound cake might be waiting, we all do that too :) Cancer teaches us to really live in the present again. It's something we lose as adults, kids do it all the time.

Anyway, I'm rambling, lol. You know you are in our prayers, and they are ongoing until you tell us otherwise :)

God Bless, and try to get some sleep.


Kalona said...

Jennifer, thank you for saying exactly what I need to hear this morning! I wish I could give you a big hug. I'm looking forward to celebrating all those special moments, being with my family, and living life to the fullest, just like you! Thank you sweet friend.