Hi! Here I am at Day+160! I’ve been busy, happily getting adjusted back to my “normal” life.
I’ve still been dealing with stomach issues. After learning that I acquired a new cinnamon allergy, new gluten intolerance, possible soy and yeast intolerance, add that to my good ‘ol IBS on overdrive, it’s been kinda difficult to find a diet that won’t upset my stomach. FODMAP diet + lactose-free + gluten-free + soy-free + yeast free + no almonds, strawberries or cinnamon = AIR…I can eat AIR. So, if I look thinner it’s because I’m no longer on steroids…also because I CAN’T EAT! I’ve been adding “the foods” (nothing that brings joy) into my diet a little bit at a time and sometimes I can tolerate them no big deal. Other times “the foods” are horribly wicked evilness disguised as something that tastes really really good and then they destroy my entire day…or two. Doctors are still trying to figure out what it is. It’s a process, we’ll figure it out. My other issues so far have been minor and are the result of being on steroids for a looooong time, and basically putting my body through a nuclear blast. I just need time.[...]
Hello! Again-it’s been a loooong time since I’ve posted an update-I’m so sorry! It’s been 77 days since my transplant and 85 days since I was admitted into the hospital at Mayo Clinic Jacksonville. My Titi Norma and I have been living in our Jax apartment and I’ve gone from seeing the doctor 3/week to 2/week to now only once per week! I had an overnight stay in the hospital for tests to determine the cause of my stomach issues. All the tests were clear except for inflammation that we’re trying to treat with diet and by stopping some medications. My bloodwork has been steadily improving and my happiest moment to-date has been going home for 4 days to be with my family for Thanksgiving. Even though I couldn’t see everyone that weekend, it was a blessing just to be home. I’m much stronger these days. I’m able to walk at a normal pace for a mile or so without stopping. I haven’t used my wheelchair in weeks! I still wear a mask in public but that’s just to be extra safe since it’s flu season. I don’t care if I get some stares-at least I am well and able to be out![...]
Hello! It’s been a while since I updated this! I’ve been living in our temporary apartment in Jax now for a couple weeks and I’ve been working on getting stronger everyday. David went back home to start working again and my wonderful Titi Norma has been doing a fantastic job of taking care of me! I have bloodwork and see the doctor Mondays, Wednesdays, and Fridays. My numbers/ cells are not normal yet but getting there. They go up and down as normal. No sign of graft vs host disease-thank You Lord! The best news so far is that they found no lymphoma in my bone marrow! Now we wait for the results of the chimera (sp?) test. That will tell us how much of my cells are my sister’s vs mine. We want it to be 100% Raquel in there! So praying for that good news. I’m being forced, I mean, I’m being motivated daily to walk at least a half mile a day 😆. I’m so weak that it’s not easy. We go to the shopping center here that’s outside and I can walk with my mask on and window shop. I know I’m getting stronger each day. Last week I couldn’t dress myself or bathe without crashing on the bed afterwards. Now I can dress myself without help! Yes, the transplant was a big deal but the aftermath is the REAL battle. Day by day. Overall I’m feeling good! Wish I was stronger but doc says to be patient. Now for some unknown blasted reason I developed mouth sores (again) that make it very difficult to eat so I’m on a liquid diet again. Even yogurt hurts. 😔 Just when my tastebuds started to work again! I’m soooo hungry for real food!😢😢 I lost like 6lbs in 2days! As soon as the sores go away I’ll probably add back 10lbs from all the food I’m gonna eat that I’ve been dreaming about!! You don’t even know how badly I want a greasy burger and fries!😩 [...]
Hi to all! Nothing can bring me down today because today I was discharged from the hospital!!!! I said, through tears on Sunday, that I will be leaving Tuesday and God's will made it so! Had an interesting time getting the catheter out of my jugular. It’s been in so long that scar tissue formed around it. Took quite a bit of force but the doc numbed me up pretty well and with a firm tug and some snipping it popped out. 😳🤢 We got packed up and said our goodbyes. My favorite moment today was when David and I walked in to the apartment we have rented for a few months and he dropped the bags and gave me a big kiss! Our first kiss in 29 days! I am thankful. I am blessed.[...]
Hello! This has been one of the toughest weeks of my journey. I am still dealing with stomach issues and pain from mucositis. Even with the mouth-numbing mouthwashes and preparation h. It’s been torcherous. Today I had a breakdown. The doctors came in and asked how I was doing and I let it all spew out in tears. Thankfully I have amazing doctors and he said “ok, it’s time for a little fresh air!” David rolled me out in a wheelchair with a jacket, gloves, glasses, and mask on into the fresh air. Thank God! I came back refreshed and ready to move on. So now my goals are to get off the feeding tube, eat at least 3 meals and frankly just keep it together. I can’t leave until the diarrhea is also under control, but so far today has been better for that as well! [...]
Hi Everybody it’s David.
Carla’s hit her roughest patch so far these past couple days. Her GI symptoms from the C Diff are back and to make things worse this time around she’s now got Mucositis. To save you the Google search, Mucositis is “the painful inflammation and ulceration of the mucous membranes lining the digestive tract”. This is one of the nastier of the possible side effects from chemo and one that we really didn’t want to have to deal with. As our nurse coordinator Paul described it to us pre-admission, Mucositis effects everything from the “rooter to the tooter”. She’s got a perfect storm of side effects going on with the C Diff and Mucositis to go along with the treatment protocols for each. Since she has the bacterial infection in her gut, she can’t take Imodium to stop the diarrhea. She also has to take an oral dose of Vancomycin 4 times a day for the C Diff but with Mucositis, she describes the pain in her mouth as a chemical burn from her lips to her throat. Today has been the toughest day for me as her husband and caregiver to watch her suffer through the pain. Carla’s as tough as they come, but she’s been brought to tears each trip to the bathroom. Her doses of Vancomycin are even worse. She takes about 2 ounces of liquid that burns every part of her mouth and throat and she knows she has to keep it down or she’ll have to do it again. She’s resisted the pain meds this entire time because of the nausea it brings, but tonight she’s finally relenting and will take something with her midnight dose. The doc’s think they have one that might work without the side effects. Either way, this might be a trade off she can’t avoid. Tonight’s nurse was shocked that she hasn’t taken anything yet for it. Usually patients are on a steady morphine drip when they have Mucositis as bad as this. Please pray for Carla that the pain meds work and that there aren’t any additional side effects to add to her current misery. The healing will really happen as soon as her new cells arrive, which could be as early as tomorrow. Once she has some white blood cells the mouth sores will start to heal.[...]
Hi everyone! Well the last 4 days have been good but I’ve been very weak. Sleeping most of the day or just in bed feeling icky. My counts have almost hit rock bottom. I currently have 0 white blood cells, 0 neutrophils, 7.2 red blood cells, and I had 5 platelets! 😱 They draw my blood every night at midnight and last night I needed a platelet infusion so now I have 41! It’s really hard to sleep during this “low count time” because once you get to midnight when they do blood draws, they wait for results, then they give you pre-meds half hour before the infusion you need, then the nurse has to stay with you and check your vitals before, during the infusion and after. So from about 3-5:00 am I’m basically wide awake. The transfusion helped me have some more energy today but still not normal. Tonight my hemoglobin will probably drop below 7 and I’ll get a red blood cell transfusion. Did you know...? When you have an allogenic stem cell transplant your blood type could change to that of your donor? They recheck your blood type every time to make sure they know what blood type you need for infusion because it could change at any time! Blood type changes people! That’s just craziness. 😆 Luckily my sister and I have the SAME blood type! So she really REALLY is my perfect match! Another new thing today has been...my hair. I’ve posted pics of my crazy hair that I have enjoyed having back from being really short. Enjoyed the curls! But today it has finally started to drop. I have clumps of hair coming out and that is fine by me! I’ve enjoyed it while I’ve had it, which has been longer than most people that had as much chemo as me. I’ve tons-o-time to accept my short hair and I’m ready for this next stage in the battle. So I’ll let it be for a few days to see how much stays, then bzzzzzzz it’s gone! The nurses have clippers ready! I even have an awesome cleaning tech that makes wigs and she’s so sweet she says she’d come in and show me. 🤗 I’ve been truly blessed with the ease of this journey. I just feel so thankful and blessed. You might not understand how significant it was that my SISTER was a 100% match. I didn’t realize it at first. I just thought-yay that means it will be better for me, but didn’t realize how. Now I see it. I see it in the suffering of the others here that did non-related match donor transplant. I say it to every doctor, the suffering I endured when I was sick and pre-chemo was far worse than anything I’ve felt here so far. It is amazing. People here are dealing with liver and/or kidney failure and extreme pain. That much of a difference. So I want everyone to know that MY SISTER IS MY HERO AND HAS SAVED MY LIFE! Without her being a match I would be so much sicker right now. I know the road is not over yet but this is a good sign and we are optimistic that I will have minimal rejection issues. I have a request, I’d like everyone please to add Taylor to your prayers. He is a twenty-something yr old that had his transplant before mine. Non-related donor. He has had a really hard time with the rejection drugs and has been very sick. Scary sick. We see his dad when I do my walk-around and the worry and stress on his face is heart wrenching. Yet, he still says hi to us every time and says he’s praying for ME! I need my prayer army on this! Please pray Taylor gets better quickly and beats this thing.Thank you, also, for your prayers because above all else it’s been God that has been with me through all of this. He has made me well. Now, once they declare me healed, I will use whatever experience this battle has taught me and my family to further His will. He must have something big planned for us! What family goes through 2 transplants 2yrs apart? Honestly. Just months ago they gave me 14 months to live without a transplant. I had the option that so many don’t have, transplant for full remission. I’m here! I did it! We got this and I will not let this 2nd chance at life go by unappreciated. Phew-I’m feeling super pumped and ready to do this! Nineteen days in and Day +10 done ✅! [...]
Hi everyone! So the last few days have been pretty bleh. I have an infection in my gut, common but nonetheless-no bueno. Once they started me on antibiotics I started to feel better, but it’s still a 💩 issue. Maybe wondering what my days are like? Well, every day I wake up feeling pretty good and have energy. But by mid morning I’m feeling pretty cruddy so I take like a 2-3hr nap-then I feel ok again! I've started getting neupogen shots in the afternoon, which make me feel like I have a mild flu so then I’m kinda cruddy again. So, I take another nap and I’m ok again! 😬 yep! That’s about it. My day revolves around each symptom and medication side effect. 😐 But I must say, that I do feel a little better each day! And the staff keeps commenting on how well I’m doing soooo I’ll take that as a good sign! My goal is to be done with this place at around Day+14. I won’t be home then, but at least I can leave the hospital! Man, I just realized I’ve been here for 15 DAYS!!! 😱😱 Welp. That’s ok! I’m feeling more like I’m in a routine. Not that I can EVER get used to this place, but I’m more familiar now with the way things work. And let me say-Mayo is TOP NOTCH. They’re staff of doctors, nurses, techs, EVERYONE is like the best I’ve ever had. I just keep thanking God that I am here. What a blessing to have them in our state! What a blessing to live in this country, in this state, at this point in time. I feel blessed. On that good note- Good night everyone! 😘😘. [...]
Hello! Today is Day+3! I started today feeling really well! David and I did our “laps” around the nurse’s station and I had tons-o-energy! We finally got to see the helicopter land in the back yard. My scoreboard shows everything is going as planned. Then...chemo happened. Dang you chemo. I just need to do 2 measley days of chemo today and tomorrow and then I can be done with it for GOOD! So I started my infusion at 1:00 and it hit me like a brick. Aches, chills, stomach issues. Same ol familiar misery. I took a nice long nap and now I’m feeling a bit better. Ugh. Once I finish the chemo tomorrow I just might break out into song. The T-shirt I’m wearing might be the tune. 😆 I’m soooo close to being myself again, I can feel it. So after tomorrow it’s “SO LOOOONG CHEMO!!” Don’t let the door hit you in the...🤫! [...]