Below are all of the posts from 2016/2017 on my old site archived into this one post. They are now in chronological order for easier reading/navigation.
Back Pain Again
Recently had an MRI for my new back pain. Mostly intense leg pain in the thigh, knee, and shin, but a little in the low back and hip too. Doesn’t sound like there is any new growth to worry about according to the report. My lumbar spine sure seems messed up though. 4 herniated discs and some other junk according to the report. Sounds like a lot of pressure on the femoral nerves. Seems like these issues may be more routine in treatment though. Appointment tomorrow with the surgeon that fixed my back last time to see what he thinks.
This has kind of crept up since early this year and gotten worse. I tried being more active outdoors and joining a gym, plus switched to a raised desk at work so I can stand half the day, but nothing has seemed to help so far. I’m hoping to get by with physical therapy and maybe some injections, but we’ll see what the doctors suggest. I have been taking tons of ibuprofen and don’t want to cause any issues by doing that much longer. More recently the ibuprofen can take hours to kick in, so I’m in pain for a good while. I may need something faster or stronger. I can hardly focus at work and I am very irritable when this pain is present. If I don’t take more before bed, the pain will wake me in the early am and I won’t get back to sleep for hours. I described my leg pain today as a gunshot wound without the mess and blood loss.
Years sitting behind a desk and years of computer gaming before that, plus years of bad posture and being overweight, and my more recent back surgery and hospitalization in 2014 have all been a recipe for this situation. I’m just ready to feel normal again so I can focus and enjoy life. I feel terrible for people who must perpetually live like this. I can hardly stand a few months. At least I’ve got good insurance and great doctors to help me through it.
Well my back isn’t as bad as I thought. Doctor said the radiologist was just being aggressive in his report to cover every little thing. He is leaning towards the pain being a side effect of the radiation. I am being set up with an appointment with a pain management doctor to see what course of action to take.
Got a call from the neurosurgeon office again today letting me know he wants a better MRI. The first one didn’t have great images so he set up a better one at the hospital location so he can see better to rule out any other issues 100%. The first one was an open MRI at an imaging center, but the hospital site has the real deal full tube. Still have to set up an appointment with the pain management doctor as well.
So Saturday my leg pain got extra severe, and would not respond to ibuprofen. Went to the after hours for a quick check and got muscle relaxers. Those didn’t work either. Decided it was time to go to emergency, about 6pm. Took awhile to get all checked in and into a room there after explaining everything to numerous people. Had some blood work drawn and got some x-rays. Also finally got something that gave me relief for the first time, Dilaudid. Stronger than morphine and kicks in fast, I was suddenly high as a kite but no pain. After waiting for the lab results the doctors decided to admit me around midnight. They saw that my platelets were very low as well and trying to figure out why. Met with more nurses and doctors and they scheduled an MRI for Sunday to see what they could find. Been switching between Norco and morphine to keep the pain away during all of this. Had my MRI today and also met with more doctors who wanted an ultrasound of my abdomen. The pain is slightly more managed now, though I’m still not a fully functional person. They are going to review everything Monday morning to try and figure this out. Will also meet with another doctor on Monday. They need to figure this out so they can fix it and so I can know how long I will be down. I busted out my cane from my last recovery, and using it for extra precaution. My legs aren’t particularly weak but the pain and spasms hinder performance in basic getting around. I have fatigue and lightheadedness when standing for a few minutes as well. Right now I’m just waiting on a diagnosis so we can proceed.
8-1 Update Mid Day
Suspecting a recurrence of cancer, but no official word yet. Few more tests and such. Pain is much more manageable now with the norcos, though the goal is to stop the source of the pain. I am on neutropenic precaution for diet now as well. May be transferring back to USC Norris where I spent my time in 2014. Mentioned something about a drug that may be a good option to treat this too.
Evening Update Quickie
Still waiting on the transfer and or blood marrow biopsy. Just trying to take it easy and wait it out while decisions are made. Started neurontin tonight which is supposed to help with nerve based pain.
Pain is under control pretty well now with the neurontin and norcos. Still awaiting the transfer to USC Norris. No other updates yet.
8-2 Update 2
Just waiting on USC to make the decision now of whether I get transferred to them or if I go home and proceed further as outpatient(with possible inpatient down the line) also one blood test is still pending that takes a few days to complete. My pain seems to be managed pretty well but I’m still a little trembly getting around with the cane. Stay tuned for further updates.
8-2 Night Update
I will be transferring to Norris by end of tomorrow. Hope to get the final tests to figure the rest of this situation out. Also should be able to figure out how long I may need to be on leave from work. And then can figure out if I need to file any claims to disability or supplemental insurance. I’m looking forward to getting a timeline laid out for this and getting back to normal days again.
Still waiting for an open bed at USC Norris. They are going to go ahead and do the biopsy here at PIH tomorrow to make some progress while they wait. I’m sure insurance doesn’t like someone just chilling in a hospital room with no real procedures happening. Still managing pain fine and the results of the last blood test they were waiting on were negative so that is a good sign too. My phone has had crappy service today but finally got the wifi working a little bit on my tablet. Walked the halls a bit today to get some exercise and not go stir crazy and to check out the views through the other windows.
Had bone marrow biopsy today, piece of cake. Will follow up with results on Monday. Going home this evening and will rest over weekend. Still have a bit of fatigue and lightheadedness from the lowered blood counts. Also need to avoid crowds and areas that may have sick people. The next few appointments will determine what is next. Have prescriptions for the meds that are working for me at the moment. Any further treatment will most likely be at USC Norris with my primary oncology team. Though Whittier PIH has been amazing! It is a good feeling knowing that great care is close by and easy to access!
Good to be home for a full day once again. Still have fatigue so been resting and taking things easy. But got some paperwork sorted through and started getting together forms for insurance and disability. Tomorrow I can remove the dressing from my biopsy site and take a shower again. Had some pain in my rear/hip area from that procedure but my meds made quick work of it. Waiting for Monday to hear the results and to know what comes next. On the 17th is my next appointment at USC so will also see what my doctor over there thinks. She is on vacation next week so couldn’t move it up earlier, but if anything serious comes up I can call her NP who always gets back to me in no time. This whole situation has been made so much easier having amazing caregivers, great insurance, and support from family, friends, and my work.
8-8-16 Update – A Diagnosis has Arrived
Went to my appointments today, first one was just to update my local primary with my status. Second one was to find out the results of my bone marrow biopsy. The leukemia is back. Biopsy results showed that I only have about 10% good marrow producing blood. Makes sense why my counts were so low now. Going to have some transfusions tomorrow and then start to figure out the course of treatment going forward. Luckily this time I didn’t lose use of my legs and don’t have to learn to walk again. Got my disability paperwork started so I won’t have to worry about that later. Extra supplemental plans were a good investment. Overall feeling pretty good other than the fatigue, ready to get things started and be on my way back to normal again. Will be tough but I won’t let it get to me, I can stay positive pretty easily. Worrying doesn’t fix anything, so it’s useless and I won’t waste energy on it. I’m in good care with the teams at both hospitals. Thank you all for the support, prayers, and good vibes!
8-9 Mini Update
Getting some platelets right now. Going well. Will be going home afterwards and should have a bit less fatigue.
Will be admitted to USC Norris this evening to get my treatment plan laid out and started. Went to PIH earlier today to pick up some paperwork and a copy of my latest MRI. Pathology slides weren’t ready for release so those will need to be picked up tomorrow and brought to Norris. Fatigue has been up and down today but got in some walking at the hospital. Got a few more steps taken for disability and insurance procedures too. My bag is packed and ready to go for my stay at the hospital. Tablet, chargers, a new book, clean undies and some other fun things as well as some info for further paperwork filing. Got a good chunk of shows and movies added to Netflix to watch too. Sucks having to go through it all again but I’ll get to see a bunch of familiar faces down there from before and probably some new ones too. Stay tuned y’all!
Sorry for missing yesterday, been busy and got tired. Yesterday spoke with doctors a little, had chest x-ray, mom delivered slides from PIH from bone marrow biopsy, had a muga scan which is for the heart with nuclear medicine, plus started some other meds and steroids. Also met with a neurosurgeon to have an evaluation to see about potential surgery or radiation for a small lesion. So far not seeming to need that as of yet.
Today talked to doctors about the chemo plan which is a very effective proprietary treatment that USC developed that is perfect for this scenario. Mostly similar drugs as last time so I know what to expect except for the last one that is the proprietary component I believe. Should start cytarabine tonight, day one, 4 small doses every 12 hours, get a push of vincristine tomorrow day two, then again on day 8, methotrexate on day 15, and the last one I forgot the name of on day 16 which should be the 28th of August, or 29th if they don’t get this started soon.
Shortly after that had the picc line installed right near where it was last time for familiarity and ease of use followed by chest x-ray to verify position. With that good to go, I got the IV removed from my hand so I was able to take a shower efficiently, or somewhat efficiently. They have new policy for picc line that they use a full arm glove instead of the old aqua guards and extra tape. This is much nicer on the arm, but for me it was impossible to use the hand in the glove properly, and your forearm doesn’t get washed. I asked if I could bring in my own developed method from two years ago and they said yes so I’ll be doing that. Saran wrap and electrical tape, it is flawless. They also have a new policy after you dry off from your shower you have to use these CHG wipes on your legs, arms, belly, chest, and back that is similar to getting scrubbed in for surgery. They are heated too. Feel real clean afterwards though. After my shower I needed a little break to regain some energy so I just chilled for about 30 mins on the bed checking social media and texting with some friends.
Then a team arrived with no prior announcement. Surprise bone marrow biopsy! Lol I guess PIH Whittier didn’t run as many tests as they would like to check all loose ends so it had to be done. Not bad, just some weird feelings and pressure, and hearing them grind through your pelvis haha. Got some morphine before that to break in the picc line. Whooooo that kicked in fast, plus a bunch of lidocaine locally. Had to rest with pressure on the spot for 30-45 mins afterwards to help prevent bruising. So right back to social media and texting. Also earlier today spoke with the new social worker for the young adults for a bit to go over life in general. Let her know I’m positive as can be and all is well at home and financially thanks to insurances. Got hooked up on some extra pillows when they made my bed today too. Had a most excellent shrimp cocktail with dinner that would rival some nice restaurants. Nice jumbo shrimp, perfectly deveined, and the meat came out of the tail shell without a trace. Just got my nightly meds as well as premeds for chemo. Antibiotics, antiviral, antifungal, anti nausea, anti gout, steroids, and my neurontin that seems to have completely eliminated my leg pain. 10 pills, a push, a drip, and in a bit a couple eyedrops. And since I’m hooked up to fluids in addition to the upcoming chemo I’ll be in non stop pee mode for the next few days. Gotta do it to flush out the toxicity of the drugs while treating the disease, so I will deal with it 🙂
They have new upgraded technologies in the rooms now too. They got the scanner guns and barcode wristbands to make drug charting faster and more accurate and pops up notifications if there is a conflict or otherwise. Also new IV pumps that are super high tech and modular so you can have 4 lines running on one pump. This means if I have to pee in the night I only have to unplug one cord to move the pole. The pumps have a whole computer system in them with all the drugs and doses programmed in so it knows exactly what it’s regimen is and syncs between all modules. The one thing is that the alarms on these are super loud, but my nurse turned the volume to the lowest and it is still plenty to wake me without scaring the crap out of me. Also the TV has an upgraded interface and new on demand movies, but still a low quality feed of less than great channel selection. PIH still has them beat on the TV channel selection and feed quality, plus they have the nicer Samsung TVs over there too. I’ve got my phone and tablet with Netflix and YouTube though so I don’t really need much TV anyways. Plus I brought a book to read and I’ve got plenty of podcasts to catch up on.
That’s all I have for today’s update, but it was a big one. Which reminds me, I pooped twice today and yesterday too! Goodnight!
Last dose of this chemo drug is almost done and I am still feeling good. I feel like I am tolerating everything even better than two years ago. Since I have been more active and eating healthier my body has less inflammation and more energy overall plus I have lost weight over the past year as well. Also I am not recovering from a major surgery or paralysis so that helps too. Not sure what my discharge date or plan is just yet but will update as I hear. Keeping active to stay strong and fight fatigue, plus stave off any complications like DVT or atrophy by getting in my laps around the floor. Just a quick post to let you know I’m doing great all things considered.
8-15 Quick Update
Feeling sore and achy today, I figured it would kick in soon. Getting an MRI today too over at Keck so I get to go for a super short ambulance ride haha. Also will be getting a spinal chemo tomorrow. Will probably be here for a solid month for this course of treatment.
8-16 Quick Update
A little achy today again, but once the steroids kick in I’ll feel alright. Got a unit of blood and platelets last night and that helped my energy level as well. Probably get another unit of platelets before the spinal chemo today too. Everyone here has been great!
Another recovery day today, another unit of red blood cells and getting some more insurance paperwork taken care of. My buddy Richard stopped by for a chat since he works in the next building over as the hospital photographer. Always a fun catch up. After this blood finishes I should be energized for a few laps around the halls and then get all showered up. Been making further tweaks to the menu to get more veggies and things I want in my meals as well though I keep forgetting to ask if they have avocados. The dietary team has been great as has everyone here. Still getting the achy mornings but once the coffee and steroids kick in I feel much better. Started to watch Stranger Things on Netflix last night, kind of creepy sci-fi x-files like show, but pretty interesting. Thanks for the recommendation.
Just another recovery day. Not much to report. Mom brought clean clothes and mail to go through. More paperwork fun of course lol. I got a massage today and they may be back next week too, so I told them to come on by! Very relaxing after stiffening up a bit from all this rest. Been getting a decent amount of laps in around the halls, but can only do so much with my lowered energy from current blood levels. Quick visit from the chaplain again as well as the social worker. I found out I can get avocados from the kitchen so I am excited about that too! Everyone here continues to be amazing to me and truly makes something so terrible as easy as possible. Getting my picc line dressing changed again later to spruce it up so it doesn’t look so bad from some dried blood on it. Will help prevent infection and aid in monitoring the insertion site as well. Hoping my counts improve and energy comes back so I can get in even more activity. Stool softeners been keeping me regular enough but I don’t dare dance with the laxatives hahaha
8-19 Quick Update
Breakfast was great today, I’m really getting the hang of these menu custom requests. Energy levels are pretty low today but will be getting some platelets which should help with that. Also due for a small dose of vincristine today, then a week of recovery time to let the counts come back up before the next big drugs. Will do some laps when my energy picks back up a bit.
Had a fever yesterday so was a bit out of it. Lots of rest and fluids and extra antibiotics. And ice chips, lots of ice chips. Got some platelets again today and started to feel a bit of energy coming back. Mom and Cindy visited today and brought fresh clothes and things. Not too eventful but I did manage to walk the halls a little tonight with my lowered energy. Getting some extra fluids again cause blood pressure a little low. Still hanging in there. Trying to decide what to watch next on Netflix.
Way more energy today! Got some blood and platelets at 3am and they really energized me today. Got in lots of laps around the halls and will prob do some more after dinner. Mostly uneventful day but got a quick visit from physical therapy and occupational therapy to see how I am doing. Still eating healthy and feeling good. Pooping fine too! Lots of veggies and stool softeners to thank for that. Blood pressure is balancing out again as well as pulse. Been catching up on It’s Always Sunny on Netflix. The only things I really watch on the TV are Price is Right, Jeopardy, and Wheel of Fortune. They don’t have my channels here, so Netflix has been great! Thanks again photo editors!
Feeling pretty good today, got blood and platelets last night and I’m back on the steroids. Got the next chemo underway too. One more tomorrow and then a last little one end of next week. Then just need my counts to stabilize and I can go home again.
Almost done with all insurance paperwork, Allstate requested one more document, and state farm I will probably finish up in person when I go home. Been watching the construction crew build some more scaffolding across the way over the past couple days. They made it to the top and today are covering it with sheeting. I can hear them working all night and it adds a nice ambient sound. Wish I could open the window a crack to hear more though. The food has been OK but it gets repetitive and I am craving some Mexican food and barbecue!
Had a nice visit from Chris and the Fishers last night. Hung out for a bit and had some fun. Got some blood this morning that energized me up again. Got in some good walking the halls today. Had my chemo around noon and still no side effects, feeling good. Mom visited and brought clean clothes and my assortment of hair clippers. Buzzed my hair, shaved my beard, and trimmed the nose hairs! Feeling fresh and cool now. I haven’t done any of that in over a month. Drinking plenty of water to keep my system clean as I can and still eating healthy options with as many veggies as I can and good proteins. Still can’t wait to go home and cook for myself though. I need more flavor lol. Estimated around ten days to bottom out and recover before I go home!
8-30 Quick Update
Still feeling good, just waiting for counts to come up. Getting in my exercise and nutrition. Not much to report. Tolerating everything as good as can be. Thank you all for the support!
A little tired today, but getting some blood to help with that. Still waiting for counts to come up, should be going home estimated within a week. Got some platelets yesterday and had a nice visit with my buddy Kenny. Not on fluids anymore so I’ve had more untethered freedom and less peeing in the night so sleep has been good the past couple nights. Found out I can order tacos so I’m gonna have a treat tomorrow. My main doctor is on rounds now too so it’s a bonus being able to communicate with her daily.
9-6 Quick Update
Had a few rough days, but things are starting to look better. Hopefully be going home soon.
9-15 Update, Home!
Finally home! Such a good feeling! Still plenty of recovery and more treatment to go, but I’m home for a couple weeks to relax and feel comfortable.
Been at home for a good while now other than appointments and blood transfusions. My doctor referred me to City of Hope for my next treatment. So I’ve had a bunch of tests and procedures to get me prepped for that. It is a clinical trial but has the best potential for remission for my situation. Have a few appointments this week as well. Wednesday they will harvest some cells from my blood to be treated in the lab for later infusion in a few weeks. May have some chemo in that period to prepare for the infusion. Feeling good currently but still a ways to go. Once this treatment is complete we can move forward with a bone marrow transplant for the best lasting remission. This new hospital is really nice but much bigger so still getting used to the layout. Everyone has been very helpful too. Not sure when I’ll be admitted yet but I’m curious to see the rooms and what TV channels they have haha.
10-14 Quick Update
Had my cells collected on wednesday for the lab to modify. Will be about 3 weeks til they are ready to infuse back into me. In the meantime, having a small bit of chemo starting monday to hold off the disease. Should be all outpatient so I will get to enjoy a few more weeks at home before the main infusion of my modified cells. Currently just trying to figure out the best methods for sleeping and showering with my hickman line, and waiting for the incision on my neck to heal fully. Overall feeling good though! Just minor discomfort where the line passes over my collarbone.
Sorry it’s been awhile since my last update. Not much has happened lately. Weekly checkup and quick chemo tomorrow. Maybe find out a date that I will be admitted for my CAR T-Cell infusion. Been doing good at home, very minor bits of fatigue and stuff from the chemo, but nothing stopping me from doing anything in my normal routine. Neck incision almost finished healing too. Have come up with a decent method for showering as well, keeping my line dry. Got to visit with my grandpa this week and go to lunch while he was in town. Also found out one of these bottles of pills on my desk cost $5500, but my insurance covered it all. I am very thankful to have such great insurance through my work!
Got some more dates and info from my doctor today at my appointment. I have a PET scan this Friday. Next week on Wednesday the 16th I will have another bone marrow biopsy and another lumbar puncture(sounds like I’ll be sore that day). One week later on Wednesday the 23rd is when I will be admitted to get things started for my treatment. Will have lymphodepletion chemo to bring my immune system down so the infused cells can do their job. Monday the 28th I will receive my CAR T-Cells that will destroy my cancer for good! Haven’t heard anything further on a transplant yet. It may not even be necessary after this treatment, though it was in the original plan and they have initiated the search.
Once I am in, I will be in the hospital for probably the rest of the year for monitoring, at least 28 days, although this should be less taxing on my system than traditional chemo would have been. I have been reading more about this and talking to lots of people about it and this seems to be the future of cancer treatment, and will change many people’s lives for centuries to come. I was hesitant at first about a clinical trial, but the more I have learned about it and having seen results of it in others with my same disease, I am almost excited in a way to get this infusion and contribute to the study. I am actually very lucky to fit the exact criteria to be eligible for this study and for it to be available at the right time and have it at a local facility. That is what I am thankful for this thanksgiving!
For now I will enjoy my time at home before going in for awhile, though the staff and facility has been great so far.
Tomorrow is the day I go inpatient at City of Hope for my treatment. Gotta get my bag packed tonight for my stay. Gonna miss being home, but ready to get this over with once and for all! I will try to update here more often while I am staying there. I haven’t been inpatient there yet so I’m sure I’ll have something new to talk about.
I’m here! Room is nice size but not the greatest comfort. Bathroom is tight with the IV tower I’m tethered to. TV has good channels but displays weird. Food is room service style, order what you want when you want it. No set meal times. First day of chemo is almost done and not feeling anything yet. Will have more tomorrow night and Friday. The t-cells are still set for Monday but might transfer to another unit for that infusion.
Two nights of chemo down and no side effects! Still feeling great! One odd thing is that they don’t disconnect you from the IV for your shower here. Just have the tubes hanging out the door. I feel like all the steam can’t be good for the electronics. Not sure what day I’ll be transferred, but I will be in a different unit for Monday’s infusion. I’ve been sleeping great surprisingly! I think this hospital has the best tasting food out of all the ones I’ve been in so far. Had a pretty decent Thanksgiving lunch yesterday and mom and dad got to have some at the cafeteria too at no charge. We watched the Cowboys game in my room then went for a little walk. My room is right down the hall from Starbucks too.
Got a last minute visit from a new friend Nicole, who has been through all of this and then some. She was planning to visit me already, but she was stranded at LAX on her way home yesterday so made the most of the situation and came to chat and support me. Was a very informative and inspiring visit and will be looking forward to future visits and events that we discussed. It is nice having someone to discuss things with who also understands it all from experience and is the same age. Her blog can be found here: https://nicolegularte.wordpress.com/author/nicolegularte/
Had a quick visit from physical therapy today to assess me and she was really nice and knew some of my previous doctors from USC. She said she was born three weeks before me too. It is nice having people around your same age helping with your care, it just feels more relatable and fun. Waiting for parents to get here today so we can go walk around the campus and check out the Japanese garden and koi pond.
Tomorrow is the big day! Getting my CAR T-cells infused! Praying for a fast recovery and no crazy side effects. Fever is guaranteed, as that means it is working. Will probably be resting a bunch this next week. Thanks to all for the continued prayers and support!
My cells are inside me! No side effects yet. Fever should kick in within a week. Then just have to ride it out. Will keep updating as I am able.
Day+3 – Temp is teetering around 38. Feeling a tiny bit feverish and chilly. The time has come. CAR T-cells are charging into battle!
Well I think I made it through the rough parts of the treatment! Day+1 and+2 had no side effects. Day+3 started the fevers and lowered blood pressure that continued til early day+7. Fevers got up to 104. Today is day+8 and I have kept a normal temperature and blood pressure since last night. I still have some fatigue and neuropathy from the chemotherapy though. Got a unit of blood today to keep my hemoglobin up too. Also learned today I may go home early next week!
Not much to report. Still no fevers and feeling great. Getting in a ton of walking and got a unit of platelets today so they will be high enough for the bone marrow biopsy on Monday. Should be going home pretty quick after that.
Put in another 2 miles around the hospital floor today, pulling along the IV tower and going through 128 doors, building up that strength again. Should be home in a couple days.
Came home tuesday and feels good to be home. Had a follow up appointment today. Preliminary test results are looking good. More detailed results still to come. Next tests are week after Christmas for a more official result. Couple labs and follow ups next week to keep an eye on things. White cells and platelets still low but hemoglobin going up nicely. Just have to rest and recover a bit more. Need to avoid groups/crowds and eating out til those counts come back up. Enjoying being home though!
12-20 Quick Update
Still home and doing good. Got a unit of platelets yesterday and it helped with the fatigue a bit. Just need that blood to keep recovering! Pet scan and next wave of tests coming soon, then should be done with procedures for awhile.
Will be at hospital all day tomorrow for bone marrow biopsy and lumbar puncture, plus labs and doc visit. Hoping it all goes well! Hope to have results later in week.
12-27 Quick Update
PET scan results were good! Had bone marrow biopsy today but lumbar puncture moved to Thursday due to a lost blood tube that turned into a fiasco of delays and scheduling haha. Will have next visit with doctor on Jan 9th and praying and hoping for great news!
1-9-2017 CANCER FREE!
I am once again officially 100% cancer free!
Still have some blood issues to resolve and may still need transplant for that but the disease is no longer in me anywhere!
1-16 Update: Low Counts and New Mattress
Numbers still low. Not going up. Biopsy on Friday to see if they can find anything out. Also will check labs again that day and will have any transfusions I may need. Got platelets today. Most likely will have transplant to fix my marrow. Will be at least 4 weeks away. And will be in for at least a month or so with close monitoring for another 2 months.
Other than that I am feeling great and got my first sleep on my new mattress last night. Loving it so far! Old one was 16.5 years old so it was time to go! New one is from Sleep Innovations and bought it on Amazon(they have everything). Really nice memory foam and not too pricy! I did a lot of research to find a great value option.
1-23 Quick Update
Nothing new to report. Next appointment is Thursday. Feeling good 🙂
Not much happening at the moment. Have labs Thursday and follow up with doctor. Hoping to get a date and timeline possibly for my transplant and recovery. Feeling good at the moment and trying to enjoy it while I can. Just a little neuropathy in my feet still and a little swelling in ankles, nothing else too off. Had an infusion of IVIG last week cause my immunoglobulin G was low which is cells that contain antibodies. Long and uneventful.
3-2 Update Tentative Inpatient Dates
Had some training and pre-tests for the upcoming allo stem cell transplant that works exactly like a blood transfusion. I will go inpatient again tentatively on the 13th with day zero landing on the 22nd. The days before day zero is the conditioning period which includes radiation and chemo to wipe out my current immune system, and premeds to help hold off any adverse effects. Day zero will be the day I get my new immune system, but it will take around a year for it to build up and function fully in my system. Will need to get my childhood vaccines again after a year as well. I will be inpatient for roughly a month or so then have a couple more months of close monitoring from home with two follow ups per week til around day 100. Supposed to avoid alcohol/drugs for a year or so, and avoid sunlight and crowds as much as possible too. Will probably have long term fatigue as well during this time. After a year though I am hoping I should be back to good health for a very long time. Will be posting more once the process begins as my mood permits. Have a ct scan on saturday and a bone marrow biopsy next wednesday as well as part of the pre-testing.
3-13 Quick Update
Being admitted today. Had my labs and appointments this morning then got some food at the cafeteria. Afterwards, took a walk through the gardens and fed the koi. Now just waiting for a room to open up. It is 90 outside so enjoying the ac in the lobby.
So far doing great! Past week had all my radiations and chemo and premeds for the transplant. Still able to eat and walk around and feel no pain or issues. My taste buds are dulled but if that’s the worst thing I’ll take it! Transplant will be tomorrow, the cells are coming from donor in Europe. The process is just like a blood transfusion. The facility and staff here are great once again, no complaints other than I miss my new mattress at home and being home of course lol
Feel like crap. Mouth and throat sores make it hard to chew and swallow anything. Bad diarrhea gave me intense hemorrhoids that hurt really bad and make it hard to pee as well. I’m getting morphine every two hours to hold off most of the pain, but the discomfort is still there. And of course the fatigue to top it all off. I’m staying positive though and reminding myself that it is temporary and will soon pass. If the kids downstairs can get through this then I have no excuse.
Feeling much better and should be going home in a few days. Still a bit of fatigue but that will get better with time. Can chew and swallow fine and taste is coming back. Butt pain is much more tolerable now and should be back to normal soon. Still a little diarrhea too. Blood counts are creeping back up to better levels and they are removing some of the iv meds. Can’t wait to be home again!
I am home! Happy Easter! Time for some real rest and recovery!
Still doing good overall and love being home. Still have some fatigue and have to eat snacks all day more so than meals otherwise I get bloated. Stomach and bowels still adjusting but good overall. Small rash on my elbows and wrists but got some itch cream from doctor for it, but may need steroids if it doesn’t improve. Also started having some joint pain in my hands. Have a bone marrow biopsy on Monday to see how things are going.
Had my bone marrow biopsy on Monday and got the results on Thursday. All clear and 99% new donor cells! Also the rash on my arms is just about gone and hasn’t itched all week. Slowly starting to incorporate more foods back into my diet and my bowels are agreeing with that just fine! Things are going about as good as they can right now for my healing process.
5-4-17 Quick Update
All counts looking good still and no adverse effects or issues. Staying on the healing course! Day +44 post transplant. Almost halfway to the 100 day milestone!
A little over 100 days since transplant! still doing good. Just had biopsy to see how things are going, will find out monday. Hoping to get the line removed from my chest soon, so I can take a REAL shower and be able to go to the gym and not worry about sweating off my dressing. Need to focus on regaining strength and energy. Will have to take it easy at first since I am still healing internally.