Sunday, September 29, 2013

Safely Home

Chelsea was the only person I know who could drink an Icee at seven a.m. in the morning; she instigated a love of fall that led to the creation of a holiday- All Things Pumpkin- celebrated every October. At 25 years old, she accomplished more than most people do in a lifetime. Mine was only one of hundreds-thousands even- of lives that Chelsea impacted in life, and her impact will be felt for months, years, lifetimes to come. My heart beats in sorrow, filled with grief at the loss of such a beautiful life. The loss of a vibrant personality whose laugh could fill the corners of every room. The loss of countless unfinished conversations that won't resume. The loss of a sense of humor that had you laughing to the point of crying. The loss of time, teaching, pouring into the lives of her students, friends, family, and everyone she came in contact with. The loss of a life given over to the work of the Lord- in Indiana, in India, in Mexico. The loss of a daughter, a sister, a granddaughter, a friend. And yet, even as my heart beats in sorrow, I know that as our memories of Chelsea are shared and remembered, she will continue to live on through our lives and stories. Chelsea has found her way safely home- she is safe in the arms of the Lord. Though I see the blessing in this fact, the pain is still sharply felt. Through my prayers I've asked why and wondered at the timing- and to no avail. But still I seek comfort in the fact that Chelsea no longer feels the pain and cares of this world. We will mourn and grieve our loss, but as Chelsea desired, we will also celebrate her life even as she now celebrates in heaven. So share your stories. Share your memories. Laugh together. Share your tears. Celebrate Chelsea. And by all means, continue to seek The Lord because He has and will use Chelsea's life for His glory.

Thursday, August 29, 2013

Scan Results

Well we got the results from my scan and they definitely weren't what I was anticipating or wanting. The cancer has spread to basically everywhere. At this point there are no treatment options, and the doctor does not think it will be too long with as aggressive it is. Although this is definitely not what I expecting, I am trusting that the Lord will carry us through this because even in these times of uncertainty, I know without a doubt that my God is still good!

Thursday, August 15, 2013

Post Vacations & Chemo

Although I wish I had tons of information to give you all, I don't so this post is going to be short and sweet! :) I had a blast on both my vacations and didn't have to use the wheelchair once! Woot Woot! I had some problems with pain in New York, but I also did a lot of walking and steps so it was to be expected! (Don't tell my doctor!) Gulf Shores was great and super relaxing! I did develop a cold and something that made my eyes make all these goobers. It was worries! I did feel extra tired and had to take some breaks but I made it.

Friday (8/9) I did another round of chemo and it was no wonder my body looked like someone was beating me and I had been extra tired. My counts were pretty bad, but we continued with chemo anyways. I felt pretty awful this past weekend and after talking to my doctor/nurse I needed a blood transfusion. I don't know if I've ever been so worn out or tired. Tuesday I received 2 units of blood and am now feeling a lot better.

I go back to the doctor Aug. 22 and am expecting to scan that next week (at least that is my hope). Initially the plan was two treatments and then scan so I'm assuming it is the same. Of course things change all the time so who knows. When I get a date, I'll let you all know!

In other news, I'm having a birthday party because I'm going to be 25 years old (1/4 of a century!!)! It's on September 20 and more details will be coming, but everyone is invited! Feel free to mark it on your calendars!

Monday, July 22, 2013

Long Overdue.... Oops

I apologize already for not updating you all sooner, but do you know how hard it is to be motivated to write a blog update when there is a pool to be in, books to be read, naps to be had, shopping to be done, vacations to plan, etc. So sue me. Blog update got pushed down the totem pole, but here it is! :)

The past few weeks have been a journey of new experiences for me because until now I really haven't had many symptoms of my cancer. However, now it has decided to make its presence known. Apparently it was not satisfied with just hanging out and living in my body. My right leg has since gone tingly and I've lost some of my mobility of it. It had gotten pretty bad to the point that I was having to lift it manually to do anything (get in the car, get in bed, etc.). Fortunately, I met with the radiologist on July 11 and got the ball rolling with radiation the next day. Since then, I have been doing treatment each day and will finish this Wednesday (7/24). Because of some extreme pain in my legs last Tuesday, my oncologist moved my chemo to the next day (meaning I did my first round of this new outpatient chemo Wednesday (7/17)). Nothing like last minute chemo! worked out really well in terms of timing because I was actually supposed to do it today and it wouldn't have been as convenient.

I'm not sure what my cancer is doing or how it is responding to the radiation or chemo, but I do know how my body is doing! I feel like my legs are way better! The numbness is still there, but I feel like the mobility is better. Between the radiation, chemo, and my inability to sleep at night, I don't know what side effects are from what. I know that I have been extra tired, but nothing that isn't manageable. I also can't say that I felt 100% after the chemo, but because I know how bad it can be, I didn't think this round was bad at all. Bring it on, chemo! You've got nothing on me!  Because it's better to be safe than sorry, I have a new addition to my family too! I have a wheelchair! It does not have a name yet, but I'm working on knowing what it would like to be called. If you would like to learn how to do wheelies and/or take it on an obstacle course, you may come over anytime you'd like! It was also a good idea to get it because I'm headed on vacation this week! WOOO HOOO!!!!

So here's the calendar of events. Thursday afternoon I'm picking up one of my friends at the airport & spending the day/night in Indy. Friday morning (7/26) we are picking up another friend and are headed to NYC! We'll get home Tuesday (7/30) night and I'm planning on spending Wednesday doing laundry and repacking because my family is leaving Wednesday (7/31) evening for Gulf Shores, AL. We will get home Thursday (8/8) night and I will do my second round of chemo Friday (8/9). Whew! Needless to say I am busy for the next few weeks, but I am sooooo excited!

I don't know what is exactly next after that second round of chemo or how long we'll wait to scan or any of the details, but when I know, I'll let you know too! Until then...enjoy life and I'll enjoy vacation! :)

Wednesday, July 3, 2013

Not the Best News Ever, but I'm Going on Vacation

This summer has been a whirlwind of ups and downs, doctors appointments and hospitalizations, and plans of action for my treatment. Things are always changing, but I think we have a plan. It's not the best news; however, it means I get to go on both the vacations I wanted to go on!! WOO HOO!

Here's the updated information I have. I saw the stem cell transplant doctor yesterday with the intention of planning my next transplant, but that didn't happen. Because my last transplant was in March, I can't have another for 12 months (even though I pretty much convinced him I could handle it in 9 months- January). The other problem is that stem cell transplants are successful when the cancer is on the retreat. Currently my cancer is on the attack. Both masses need to be between 1-2 cm and an SUV # of 2-3. Right now my chest mass is a little bigger than that with an SUV 4.1 and the one in my back is in that size range, but it has an SUV of 17.6. That second mass is the issue. It is too active for a stem cell transplant to work on it. Part of that is because with the allogeneic transplant (donor cells), the goal is not for the chemo to fight the cancer, but for the other person's immune system to fight it. The chemo is to suppress my immune system so it doesn't fight the donor's cells.

With all this comes the question...what do we do now? The current plan is to start radiation next Thursday (7/11) to continue to fight the inflammation and keep me out of pain which I will appreciate. Also, in order to hopefully get the cancer on the retreat I am doing another type of outpatient chemo. I will do my first round on 7/19 and then my second round on 8/9. After that I will rescan. There is a 1 in 5 chance that it helps, and if that is the case I will probably do 2 more rounds. If at any point both masses gets to be in the range that Dr. Farag will accept, I will start the stem cell transplant process. There is then a 1 in 4 chance that that works, so for you non math people that means I have a 1 in 20 chance (5%) of survival. The good news is that that 5% doesn't apply when the Lord is on your side! I'm continuing to trust that the Lord has this in His hands! Whatever the future may hold, I know some things for sure- God is still God no matter what doctors say, God still works miracles, God is still good, and God is doing incredible things in the lives of those around me through this battle. For all of those truths and promises, I will still continue to praise Him through everything that comes my way!

On a less serious note, I am headed to NYC with two of my best friends July 26-30 and to Gulf Shores, AL with my family from July 31- Aug 8. Bring on the vacations! I love vacations!!! :)

Tuesday, June 18, 2013

Whirlwind of a Week

Well, this week has been a blur. The last 2.5-3 weeks now I've been having hip/knee/thigh pain. I didn't think too much of it, but it definitely was progressively getting worse. I couldn't get comfortable or sleep, and Friday I couldn't even hardly walk. It was bad. Fortunately (and unfortunately) for me, my doctor knows me enough to know if I call in it is probably important because I don't complain much. He ended up calling me Friday and having me come to the hospital. He had told me that we wouldn't be able to do the biopsy Monday until we had an MRI first. When I went to the hospital I figured I would get an MRI, some pain meds, and be on my way. But oh is that Dr. Carr a tricky one! He knew if he had told me he planned to admit me I would never come, so what's he do?!? Springs it on me when I get there. Oh the mass is growing into your nerve roots that come out of your spinal column and you could lose feeling in your foot by Sunday....and surprise...You're being admitted. Well played Dr. Carr, but not appreciated. Needless to say I missed my sister's birthday dinner and her grad party the next day. No worries...Mom got her present out of my car and gave it to her without me signing the card or anything, so she got the goods anyways.

The good news is/was that they were definitely able to control my pain and make me a lot more comfortable. Bad news is they are using steroids to get the swelling of the mass away from the nerves so my face looks as round as a pumpkin. Awesome. If you've ever been in the hospital you know that no one knows what's going on and it's a hot mess disaster 99.4% of the time. This weekend was no different. Every doctor had a different idea and a different plan. Great. I started radiation Saturday to shrink the mass away from the nerves, but then that got canceled on Sunday....see my point? They said Saturday that if I stayed inpatient I could still get the biopsy on Monday, but since I had been pulled from the schedule I had to stay impatient. Monday came around and guess what?!? No biopsy. The radiologist still didn't feel comfortable putting a needle in there (which I guess I appreciate), but it would have been nice to know Saturday instead of Monday.

Needless to say I am not in pain which is good, but no closer to any answers. Tomorrow (Wed) I go back in for a surgical biopsy. While they're in there they are going to take enough for the biopsy and genetic testing that my Indy doctor wants, but they're also going to take more so that the pain and weakness in my leg is not so bad. Apparently you can't have radiation for 2 weeks after a surgery, so they need to get enough of the mass out that it doesn't cause me problems for at least that long. Another unfortunate situation is that this biopsy means another night or two in the hospital. Of course I'm aiming for only one as usual, and hope to be out by Thursday evening.

By the time this journey is over I'm going to look like a beaten up crazy person! Just this weekend I got 3 new tats from the radiation and now tomorrow I'm getting a new battle scar from the surgery. Bonus! Its like a two for one deal. Get a biopsy and receive a free scar. Thanks Lutheran for being so generous! :)

Til the next episode of Adventures in Chelsea's World....Keep on Keepin' On

Tuesday, June 11, 2013

Not Exactly the News We Wanted

Last Tuesday (6/4) I had my PET scan to see if the Stem Cell Transplant worked. On Friday I was told that although the initial mass had shrunk some and gone down in activity, there was now another mass in my abdomen that is very active. My doctor in Fort Wayne didn't make any final decisions but informed me that he thinks the only option will be a clinical trial. I was scheduled to see my doctor in Indy Monday (yesterday), so Dr. Carr (Ft. Wayne) wanted to talk to him before we did anything. Yesterday I got more in depth information about the next steps. Dr. Azar said chemo, radiation, and clinical trials wouldn't work because essentially we have tried everything like that and it hasn't worked. He said I have two options -  I can choose to do no treatment and I would have 3-9 months or I can choose to do another Stem Cell Transplant. This SCT would be from a donor and would be more dangerous. There is a 25% chance that I would die in the transplant, 50% chance that I do the transplant and still die from the cancer, and a 25% chance it heals the cancer and I'm good to go. I'm not sure what I'm thinking yet to be honest. The SCT is a pretty rough process. It would be at least a month in the hospital initially and then multiple trips in the hospital for a year. My doctor has never seen a patient do one of these and not be readmitted at least once or twice for infections or graft v. host disease. No matter what I decide, the next step is a MRI and biopsy to confirm the new mass is lymphoma. Dr. Carr is supposed to call me today and let me know when those will be.

Obviously prayers are super welcomed! I know some of you have been praying for me since the beginning of this battle, and I appreciate it so much. Please continue those prayers!