Monday, November 26, 2012

Wind to my Sails....

I made it through my first R-ICE chemo.  It quickly brought back some old memories (chemo brain, steroid buzz, internal shakes, etc) and was nice enough to introduce some new ones (attack of the bladder).  I ended up taking some strong antibiotics and fortunately that helped right away.

I am feeling better and better every day.  I have a lot of fatigue, but am able to do more and more each day.  This week should be a pretty good week for me, and then I start back over on Friday for round 2. 

So...the best part.  The last few days I've had my family here in Salt Lake.  It was so fun to see them and to cuddle with them and just be with them.  I had a really hard time with the fact that I am here and they are there...because I'm their mother and I need to be with them.  I had some hard moments last week before they were here, where I would look in the mirror and I felt like there was emptiness behind my eyes.  Like the very essence of who I am was missing.  It really hurt my heart because I just associated it with me not being the wife and mother I want/need to be, and without those things I felt empty.

I had an opportunity to spend an evening out to dinner with my husband and I told him how I felt, an he gave me the best advice.  He told me to not fill myself up with the actual acts of "being a mom", (carpooling, school lunches, snack making, book reading), but to fill myself up with actually "being their Mother".  And all the sudden I got it!  I can be here and get done what I need to to get better, and I can still BE the mother they need.  He gave the example of my mom, and how normally she wouldn't need to carpool me around, or make all my meals, or entertain me (well..she is doing that right now), but normally she would not need to.  But she is still my mother.  It's something bigger--better.  Connected at the heart. 

I had a good opportunity to have my moms friend come over and give me a blessing with Larry.  In that blessing he said I would be able to fulfill all my duties as a wife and mother from afar during this process.  And you know what....I believe him.  It was the motivation I needed, and put a wind to my sails.  Now I'm ready to take on the next step...and keep moving forward! 

Thanks so, so much for all your continued thoughts & prayers!  Love, Jen

Wednesday, November 14, 2012

Ready or NOT....

So I had my consult appt yesterday at Huntsman in Salt Lake.  It was nice to be able to talk face to face with my transplant doctor.  He explained the procedure, and what to expect. 
  The transplant clinic is connected to the Oncology clinic (Dr. Glenn's office), so he went over to see if Dr. Glenn could come and talk with me about the preparation needed prior to transplant.  Dr. Glenn is an amazing doctor.  She is a lymphoma specialist, and really knows a lot about the disease.  She is an in-charge kind of person, and seems to always have answers for my questions.  I feel like I got a lot of good info at the consult appt. 
  What I really wanted to get was a time fame (ie:how long am I going to be away from my family).  She gave me the best case scenario, and it's what I plan on doing!  She said the first things I would need to do is a PET scan, Bone marrow biopsy, and have a port placed.  Then I would start a round of R-ICE chemo (which will be one day outpatient for the R(ituxin), and then one overnight hospital stay for the ICE).  And then I would have one week off, and then repeat.  After those 2 sessions of chemo I would have a re staging PET scan  (3 1/2 weeks in).  And if the cancer was completely gone I would move right to transplant.  But if the cancer had responded, but not completely gone I would have one more R-ICE treatment.
   Once I'm done with R-ICE, I will have transplant workups done: heart function tests, pulmonary tests, etc.  And once I check in-patient for the transplant I will start 5 days of intense chemo to completely wipe out my immune system (those days are considered -5, 4, 3,2, 1)  and then on day ZERO I get my harvested stem cells transplanted.  Day Zero is considered your new birthday, because you have a brand new immune system.  It has even wiped out my immunizations I received as a baby, so I get a new little yellow card and start those shots all over. Yay.
   So then from day zero to day 15 I will be inpatient waiting for the stem cells to graft, or turn into bone marrow (white blood cells).  At this point, if my counts are coming up on their own I could possibly be released from the hospital, but need to still stay in Salt Lake.  Then for 2 more weeks I will continue to go back up to Huntsman for follow up care.  And then after that 2 weeks if things are progressing smoothly, I may be released to go back to Grand Junction and have Dr. V start follow up care. 
   This is a lot of info, and it seems pretty fast and furious.  And it's hard for me to accept this emotionally because I was only prepared to come for the day.  Another thing that is really difficult is to know how great I've felt the last 2 years, and still feel, knowing what lies ahead.  But I have so much support offered to me here in Salt Lake as well as at home in Fruita, that I'm trying to just push forward and work on getting back to feeling super healthy. 
  I have received so many phone calls, texts and emails full of love and support, and I am so very appreciative of that.  I'm going to work on replying soon!  But I do thank you all for your concern and prayers. 
   I was following a little of Robin Roberts (from Good Morning America) progress on her bone marrow transplant.  I saw this video today and  I'm really going to try to implement this in my care/recovery.  She said :

"Your thoughts. Thoughts are so powerful. You've got to change the way you think in order to change the way you feel."

Click here to watch video

So tomorrow I start.  I will have my bone marrow biopsy and PET scan tomorrow.  And then Friday I will have my port placement surgery.  And then Saturday will be my first day of chemo.  Thank you again for all of your prayers.  I will continue to update as much as possible!  -Jen

Saturday, November 10, 2012

Being Patient...

So, I was originally scheduled to start chemo last Friday.  But then, I got a call from the patient coordinator from the Huntsman Transplant Clinic.  She wants me to come down for a consult this week.  I am going to fly to Salt Lake Monday afternoon, have my consult Tuesday, and then fly home Tuesday night.  It will be nice to meet with them face to face and talk about the details of what is to come.  I'm guessing I will start treatment shortly after I get back. I'm trying to be patient. Part of me wants to hurry up and get started, so I can hurry up and get done! But part of me is thankful for this delay   :/   I will update after my consult. 

Monday, November 5, 2012

You never know where life will lead you .....

Well, I thought by not updating this blog, I was in the clear.  But as we all know, sometimes life just takes you places you never expected to go.  You can either roll with it, or jump back in the driver's seat and take control.  I, of course, am going to try to take control.  Although I understand some things are totally out of my control.  But for now...I'm just going to get on with it and do what I need to do.'s why I'm updating.  For the past 2 years I have felt so good.  Lots of energy, no sickness..all my scans continued to stay clear.  I had a regularly scheduled CT scan last week and it showed some small lumps close to the outside edge of my skin (not regular lymph nodes).  So at first my docs thought it was not the lymphoma back, but I had a biopsy just to make sure.  It turned out that it was lymphoma cells, although it was an odd way to relapse.

After collecting some info, I was told I would need to start a pretty intense couple of cycles of chemo here in Grand Junction, and then if the cancer responds to that, I will transfer to Huntsman Cancer Center for a bone marrow transplant.  It's going to be a long few months upcoming.  But I have a lot of support, and again I know that this is something I will not go through alone, and for that I am so thankful!