Monday, December 24, 2012
Merry Christmas Eve. It's been snowing here all day, and normally I love a white Christmas, but this year it's keeping my family from driving up to see me. I have today and tomorrow left where I can go out in the family lobby to see my kids, so I'm hoping tomorrow the roads will clear up and I can spend some time with them before transplant day. I do have to say how happy I am that they have been able to come up and see me these last few days. It has helped me a ton emotionally just to be around them.
Yesterday there was a family Christmas party in the lobby, so the kids all came up. They had face painting, crafts, food, a live band. They all had fun. My nurse let me unhook from my chemo pole for the party because I was in the middle of treatment, and when Hope saw me she said.."Oh, mommy..where's your stroller that's helping you get better? I was going to push it for you". So dang cute. I try really hard not to use the word "sick" around my kids. I always tell them I'm here getting better. I think it makes it a little easier on them to think of that way..and that's exactly what I'm doing.
Today has been a quiet day, for the most part. We did have a group come up and sing Christmas carols in the hall, and then they left a gift. I have actually had quite a few gifts brought in , mostly from families who have been here before during this time of year and want to send a little something to lift those up going through something similar. It is so kind, and I can't wait to do something like that in the future.
I do have my sweet husband Larry here with me today. He keeps me company, and listens to all my complaints. The last day and a half were sort of sick days, I slept most of the day. But today I feel pretty good. So we have been up, going on walks. Problem is--I'm only allowed to walk around the 4th floor. Half of the 4th floor is a small circle in between 2 double locking doors (BMT UNIT), and the other half is just an in-patient floor with the family waiting room in between. So far, I'm allowed to roam around all of the 4th floor..so long as I wear my super heavy duty green mask. It's to keep all the germs out of my system (or paint fumes..I'm not sure). Anyway, I'm on a bit of a short leash (thanks to my "stroller"), but today I just felt like I needed to walk FAST. I'm so tired of sitting around, and I really want to keep up my strength. So Larry and I were power sprinting down the BMT hall today. Not sure what the other patients thought when they saw us power walking by :)
Well, I have to say so far this has gone better than I could have expected. The doctors and nurses keep telling me that 2 -3 days after transplant is when it starts to get bad. My immune system is completely being knocked out these last few days, and the effects of that will hit me next week. But honestly, I'm going to try to continue to get through it as strong as possible so I can get out of here as quick as I can. I know I've said this before...but it is so strange allowing yourself to become so sick, when the cancer itself never made me sick. In fact, the last year I've felt better than ever! And now in one day I will be preparing for a transplant that if I don't get, I would not survive from all the chemo this week. On one hand I'm amazed at the technology, and on the other hand I'm astonished that this is my life (health). But the very second I start to complain (to myself or out loud) I just remind myself that others out there go through things much more difficult than I am. I know everyone has been listening to all the events of the tragedy in Connecticut, and here in Utah there has been a lot of news about a little girl, Emilie, that's family was originally from Ogden, Utah. And I know the grief and pain those families are going through is something I could never endure. But this is where I feel like we have one thing in common. We all have to lean on Christ for support through our trials. He knows what we can endure, and he will help us through them no matter how hard they seem. He KNOWS first hand what we're going through. I have gained a stronger testimony of what the atonement really is. And for that, I am so thankful.
I just saw my blog has hit just over 22,000 views. And while I started this for 2 main reasons (to document my journey and to update friends and family) I hope that there have been a few people that have come across this blog and found some strength if there going through something similar. I know I've been able to read others blogs and find that little bit of encouragement that can be desperately needed.
I hope you all have a very Merry Christmas! Love, Jen
PS: On the title of this blog post: I went with my mom to see Kurt Bestor in concert last week. It was amazing Christmas music. One of his special guests was Alex Sharpe from Celtic Women. She sang the song "Have Yourself a Merry Little Christmas", and as soon as she sang the line... "Next year all our troubles will be out of sight" I had tears come to my eyes. I've never paid much attention to this line..but this year it's a little line from a Christmas song that brought me lots of HOPE!
(Here's a link to a version of this song by a group I love -Coldplay) Merry Christmas, Friends!
Friday, December 21, 2012
So, i checked inpatient yesterday at 11:00. I got to my room and was really happy to see it was a city view room. I love my city!! I had lots of nurses, doctors, financial coordinators and social workers visit. My nurse came in around 2:00 to accesa my port and noticed it was a little hard to find a way to access it. (( I actually had a bad experience when i had my port put in, which has been the only bad experience i've had at Huntsman)).
So..about yesterday and my port: one thing i love about my port is that i can put numbing cream on before i leave home and then when i get accessed it's totally numb and i can't feel the needle poke at all. But yesterday, by the time they came in to access my numbing cream had worn off. So they accessed one side of my port and did fine. But were unable to get the other side to access. It ended up being 4 needle pokes which is right into your upper chest. Ouch. But one thing i've learned through all this cancer stuff is that physical pain can be very temporary. And even though i would not necessarily choose it, i can endure it.
So..about the port...i've had one before, so i kind of knew what to expect. And this time i felt the nurses and doctors where very rushed, my conscious sedation did not work, so i was awake and felt a good part of the procedure. I was not happy and talked to them about it. And now, a month later, my port is not working right and they may have to replace it today. I will be talking to them and possibly documenting it for the hospital. I have no intention of pointing fingers or getting someone in trouble, but i do feel like it could be a good teaching opportunity for them and possibly keep from someone else going through that. I have become a strong advocate on my behalf. And by that i mean, i feel it is my responsibility to include myself in any decisions in my care. Mostly i agree, and sometimes i don't and i let that be known in a way we can work together as a team. I do feel super happy to be here at Huntsman. I think it's an amazing place to be. And i really need to just say how much i appreciate good doctors....but I LOVE NURSES! :)
When i checked inpatient i knew i would be able to see Lauren because she's over 14, but i thought it would be at least 3weeks or more before i could see Josh and Hope. But yesterday, my awesome doctor told me i could go out in the waiting room and see them up until transplant day. So last night they all came up and had a pizza party with me. It made me so,so happy to be able to.spend a little time with them!!
Another wonderful thing happened last night...my cousin Derrick and Aunt Eileen & Uncle Steve came up and decorated my room. It's so christmassy and cute. I will post some pics.
Well, so far so good. 3 chemo treatments in two days, and i'm feeling ok. I continue to have so much support. I'm so thankful!!
So..i'm posting this from my cell phone, so please excuse any typos :)
The following pics are..
1. My bathroom door is festive
2. Christmas banner that my mom surprised me with pics Sophie Dog, Josh....
3. Holiday banner
4. My Christmas tree...gorgeous!
5. You've heard of Barry Gibb? This is "Beary Wigg" :)
6. My whiteboard. Can you tell which part Larry wrote?
7.more pics on my banner of my little bug- Hope, Lauren& my mom.
Friday, December 14, 2012
|Shhhhh....it's a Wig! ( that's for you K & L )|
This is my Holly, Jolly wig holder. It works perfectly! It has been a little hard to feel holly and jolly, even though this is usually my favorite time of year. My stem cell transplant has been scheduled for Christmas Eve. And as "un-festive" as that sounds, actually it's a great day to have my new "birthday". I haven't really been good at updating, and I think it's because I've still been in a bit of shock, and not accepting this is happening (even though it HAS been happening). But I do want to keep track of everything, because I want to have in writing what this process is like. I also love having a place where friends and family can stay updated, and this seems to be the best way to do that.
So.....here's where I'm at. I finished the 2 rounds of R-ice chemo to try to get the cancer to be mostly gone before transplant (the less cancer you have going in to transplant-the better the odds are of it staying gone). After my last round of R-ice I was able to fly home for a week. It was so, so nice to be home and be with my family-but it was hard too. I didn't feel really well because I had just had a chemo treatment. I was mostly tired. So I wanted to jump in and do the things I love to do as a "home management/ carpool specialist", but my body would not let me. Rude!!
While I was home, I was able to check in with some friends, get some appointments done for the kids, and get some appointments done for me.
I flew back to Salt Lake on Tuesday, and then Wednesday I started what's called the BMT workup to get ready for the transplant. Really what it is, is a bunch of tests to make sure you're healthy before your insurance will approve covering the cost of the transplant. It makes sense, it just ended up being a lot of tests. They were:
Echo cardiogram / EKG test (healthy heart)
Pulmonary function test (healthy lungs)
Mammogram ( healthy..well..you know)
PET scan (to see if the cancer responded to R-ice)
Labs & Urinalysis
So speaking of the labs....I showed up in the lab thinking I was there for A blood draw. When I sat down at looked at the tray this is what I saw.......
So then Yesterday I had an appointment with Dr. Glenn and she said the PET scan showed almost all of my cancer is gone YAY!! She said there was a minuscule amount left in my abdomen, but the chemo I will get before transplant will get rid of what's left. So she said I was OK to start the transplant. If I had to be glad about one thing through all this, it would be that my body is fighting and responding and this process is continuing to move along with no serious complications. That is really a blessing.
NOW.... I'm done with medical for a few days. Lar and the kids are driving down on Sunday night and that will be our Christmas Eve. Santa got the memo, and knows to deliver our gifts Sunday night (what a great guy) so our Christmas Day will be Monday. Then Tuesday, tentatively if my insurance has sent approval, I will check in-patient at Huntsman Cancer Hospital for one month.
This process sometimes feels like a long, dark tunnel. And even though I don't love the tunnel, at least I feel I can see the light at the end of it. I KNOW the reason I am able to get through this emotionally and physically is 100% due to support I receive. I have wonderful friends that have stepped in and work with Larry to keep everything afloat back home, and they know words could never express my thanks for that. I have amazing support from my family here in Utah that have been to every appointment, every treatment and continue to take care of me. And I have so, so many others who have helped in other ways, or offered prayers. All of this combined has allowed me to focus on what I need to to get better. When you take on one anothers burdens...this is what it looks like. And what it means to someone it beyond what words can express.
Good Thought: My daughter. Lauren, just texted me to tell me was accepted into her school Student Senate for a second semester. She was also sent a letter from the National Junior Honors Society asking her to apply, and found out today she was accepted. YAY! I'm so proud of my kids and how diligent they are. And also how resilient they are. They continue to do their best and stay on track, and I am so proud of them. Knowing how blessed I am to be their mom is what makes me want to try harder and get better so I can go back to being there for them in every way!! Here's to hoping the next month flies by!!! :)
Monday, November 26, 2012
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
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
Monday, November 5, 2012
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.
So...here'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!