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kate

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kate last won the day on July 28

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  1. Hey everyone. I apologize it has been so very long since I have made an update. For the most part this year was filled with not a lot of change. That can be both good and bad. Good that I have remained in remission, but bad that I have not progressed to where I should be. After months of deliberation and trying every alternative route we could, we are left with no choice but a bone marrow transplant. The cancer cells did too much unrepairable damage to my bone marrow that it just cannot recover and produce enough healthy cells. I have been very blessed that an anonymous donor appears to be a match and is willing to donate to save my life. I have been a registered bone marrow donor for years so it is strange to think that all this time I had been waiting to be someone else’s superhero and now I have my own. All of this has been very challenging to say the least. Anyone who knows me knows that I am beyond blessed with an amazing support circle of family and friends that have made this journey much easier. If there is anyone reading this that knows of someone with cancer or any life threatening disease, be that support system for them. It challenges me to never let the worries or what if’s take over when I have all these people rooting for me. I had a lumbar puncture again last week. Dennis finally got to come to the hospital with me again and was suprised to see how they all know me. I’m not sure if that’s cool or not but they are all great so I’ll take it. Tomorrow I go for another bone marrow biopsy and to get a schedule for the transplant. I’m now on a few weeks left of home time before I go in. The admit date right now is scheduled for august 13 as long as everything goes to plan. For these last 2 1/2 weeks I will be soaking up all the family time I can before I am gone for 4-6 weeks. To save this post from being a novel, I just want to say thank you. Thank you to everyone who has stood in my corner and cheered me on. The prayers, well wishes, check in texts and phone calls mean the world. I would be lying if I said I wasn’t scared but I’m only afraid of being away from my family for the next 1-2 months. I know without a doubt that I have not made it this far for this to be the end of my story. It’s only the next chapter. All my love and gratitude ~Kate
  2. kate

    Week 24

    I know I’m not the greatest at writing but I warned of that before. I apologize to everyone for the delays in updates. I will work on getting better at posting. the last couple weeks in reality there hasn’t been much to post. My platelets dropped too low to start my next round of chemo but not low enough that I need a transfusion. Although that would normally sound good, it means I’ve been in a holding pattern waiting for the next step. I’ve been going for weekly labs hoping that numbers will come up. We’ve started some vitamin supplements which have helped all my other numbers rise, but unfortunately I just have to wait for my body to produce more platelets. Yesterday my dr decided to give me 10 days before my next appointment and check my labs again. If they are not up at that point, we will have to schedule another bone marrow biopsy to make sure the cancer cells aren’t reproducing again. i would be lying if I didn’t say all this scares the crap out of me. I try my best to keep my brave face on and stay strong like I know everyone wants me to be. The reality is though, on nights like tonight when everyone is asleep and I’m laying here awake all I can think about is how scared I am. I’m scared mostly of disappointing my husband with my fight. He has been such a rock for me that I know I couldn’t do this without him, all I want is to give him the same effort he gives me everyday. aside from all that nonsense life has just been chaotic. We’ve had a lot of random expenses come up but every time we feel defeated something comes out of left field to help us out. I have to believe if we weren’t meant to be the victors of this battle that we wouldn’t have these blessings popping up. i will continue to try and be better at updating this. For now, all of your continued prayers, well wishes, thoughts or whatever works for you is more than appreciated
  3. kate

    Week 19

    So Tuesday changed a lot of this weeks game plan. Since my mouth sores were getting so bad and I had lost a significant amount of weight since my last visit, Dr. Yang held the methotrexate to allow for a little bit of healing in my mouth. He also prescribed a medicated mouthwash to use 15-30 min before eating to try and eat more substantial meals. Since we didn’t do the methotrexate, I had to have the pegasparagus instead of coming back on Wednesday. I also had to get a unit of platelets since my platelets had dropped so much. Dr said I basically am not tolerating the full dose of methotrexate which isn’t a huge issue, some people can’t tolerate it. It just means that the treatment has to be adjusted. The plan is to continue with it next week but at a lower dose to see if I respond better. I also had to have an appointment scheduled for Friday for a lab check to see if my platelets have come up. Depending on what it is, I anticipate I may have another appointment added on next week before my treatment on Thursday. Hopefully not though. Even though I’m over halfway through this aggressive treatment phase, it sure feels like its kicking my butt more. Since I haven’t been eating a lot, I’m very weak and can’t stand or walk long. When leaving the hospital on Tuesday I lost my footing and fell in the hallway. If Dennis was allowed to be with me I know he would have caught me. Instead I fought the floor and the floor definitely won. I’m very bruised and banged up. But I’ve made it this far without falling once so I’ll take that as a win. Here’s to hoping tomorrow’s bloodwork shows better results. Bloodwork Results Potassium: 3.0 Bilirubin(Liver Function): 1.39 White Blood Cells (WBC 4.0-10.0): 1.7 Hemoglobin (HGB 11.5-16.0): 8.8 Platelets (PLT 150-500): 7 Transfusions Platelets: YES Chemo Pegasparagus via drip (avg infusion): YES
  4. kate

    Week 18

    Tough week. Discovered that the methotrexate that they started me on gave me mouth sores. It’s a common chemo side effect that I’ve avoided thus far so that’s the positive. The week was really tough for being my week off of chemo. Very sick feeling and because of the mouth sores very difficult to eat anything. A lot of weight lost during the week cuz I just couldn’t eat. Dennis got me yogurt and popsicles which helped keep me going but hearing your stomach growl and not able to do much about it is not a fun feeling.
  5. kate

    Week 17

    Today’s is treatment day. Apparently Friday’s are busy days to be down here...the waiting room was full and I had to wait quite a bit longer than normal. They used my port for the first time. I was more nervous than usual about it hurting...probably cuz their approaching my chest to stab me with a needle. But it turned out to just feel like a strong pinch and then it was done. I can live with that. Dr Yang prescribed me a new med I have to pick up for the neuropathy. It’s supposed to help with the pain but he said it can make me feel groggy. Lovely. I’ll pick it up on my way home and try it tonight. Hopefully it helps. I’ve dealt with it in my hands but the feet I can’t handle. He also suggested I start taking Prilosec every morning to help with the acid reflux. Since I’m at the point of soup making me feel sick it’s worth a shot. We held the vincristine today because of my neuropathy. Bloodwork Results Potassium: 3.7 Bilirubin(Liver Function): 1.71 White Blood Cells (WBC 4.0-10.0): 4.7!!! Hemoglobin (HGB 11.5-16.0): 10.8 Platelets (PLT 150-500): 67 Transfusions Blood: NO Platelets: NO Procedures Lumbar Puncture: NO BoneMarrow Biopsy: NO Chemo Daunorubicin via Syring (avg 5min infusion): NO Vincristine via IV drip (avg 5min infusion): NO Pegasparagus via drip (avg infusion): NO Cyclosphomine: NO Cytarabine: NO Rituxan via IV drip (avg 1.5 hour infusion): YES Methotrexate: YES
  6. kate

    Week 16

    I don’t know where to start. I’ve had a challenging past week. I had a port put in and then got an infection and had to be hospitalized for a few days. It would be easy to look at these things at setbacks but Dennis and I continue to look for nothing but positivity. Since being released I have felt better and had a little more energy than I previously had. About 2 weeks ago I had a very big test done. We’ve been anxiously anticipating the results. Today I received those. The test was done to look at my cells at a micro level to determine the cancer cell ratio and how I was progressing. I am beyond happy to report that the results came back with no cancer found at the millionth cell level. My dr, who hesitates to say to be excited because he doesn’t want to give false hope, told me I should be celebrating the news. He was visibly happy as am I. This means that I still need to continue to finish our current chemo plan but my chance of survival has significantly increased and my chance of it returning has significantly decreased. It’s been a challenging few months for me. I have always believed myself to be a fighter and be strong enough to endure any challenge presented but this one has been a test of that. The odds have been against me in the sense that leukemia doesn’t have as high of a curability rate and my form of leukemia is very aggressive at that. We have continued to believe and pray that this is just a chapter in my story but I’d be lying if I didn’t say there have been difficult days. I can’t say thank you enough for everyone’s support and prayers...this is definitely not a battle I am fighting alone. Please know that today is a day of celebration because your prayers and ours are being answered. Thank you for making me believe in #k8strong and never giving up
  7. kate

    Week 15

    Well leaving today was a no go. Fever is under control but they think I have a skin infection from the port placement. That means I spent another day in the hospital alone on antibiotics. Dennis was sweet enough to drive back down here and bring me some stuff since I wasn’t planning on being admitted yesterday. Fingers crossed I can get out of here tomorrow. i had to get another blood transfusion today but other than that it’s been mostly antibiotics and painkillers.
  8. This week is somewhat of a reprieve for me. I only had to go in on Monday. Luckily my hemoglobin and platelets were finally high enough I don’t have to go back for more count checks this week. As much as I love Karmanos and what they’ve done for me, it’s a nice break. With that said it doesn’t always mean I feel the greatest. Today is one of those days. I’ve felt very lightheaded when I stand. I made eggs this morning sitting in a chair. I find ways around it. Almost a week later and I’m still being spoiled with birthday surprises. Today in the mail I received a card and Blarney Stone from someone in Ireland. Even though this may not be how I wanted to celebrate my birthday this year, I have never felt more loved and cared for.
  9. So here we are at the end of another week. Today’s segment of “how much can we inject in her” was brought to you by 1 unit of blood and 1 unit of platelets. Although my platelet count is way lower than it should be, its higher than it has been so progress is being made. I woke up today feeling slightly nauseous and didn’t sleep well. The nausea seems to be subsiding (maybe my body just wanted the blood first) and my lack of sleep was due to a dog that is petrified of storms. At first I thought it was cute that she hated them as much as me....now not so much. Yesterday was my birthday under quarantine. I am still floored with the outpouring of love and support that I received. I am definitely feeling very blessed despite what the circumstances may look like. My husband never stops amazing me at the lengths he will go to make sure that I know I am loved. Let me tell you guys, its not in the flowers or chocolates or fancy dinners...real love is when they see you in your darkest hour and still know exactly how to make you smile by just being themselves. So this is it for this week. Monday you’ll get a new post to begin the new week and we continue on this cycle. For now, I am going to enjoy the weekend with my family and take comfort in what we have....each other. Bloodwork Results White Blood Cells (WBC 4.0-10.0): .6 Hemoglobin (HGB 11.5-16.0): 6.9 Platelets (PLT 150-500): 10 (double digits baby!!) Transfusions Blood: YES Platelets: YES
  10. With this pandemic, one major change has been that Dennis can’t be with me at these appointments. It’s definitely challenging for both of us. I struggle to remember everything they are throwing at me and he cant keep up on the blog like he wants to. The goal of this blog was to help others that may be going through something similar and struggling to find stories of the process. I know I couldn’t find much to tell me what to expect. The major thing that I am constantly reminded of is no two peoples cancer journey is the same. Whether its the type of cancer you are fighting or even how your body is handling it. Don’t compare yourself to someone else...that can lead down a frustrating path. So here we are. Me trying to help my amazing husband out by doing my best to update this as I can. He has been my rock and continues to do so much for me on a daily basis, the least I can do is try and write some words. ***Obligatory warning*** I suck at writing. You’ll probably easily notice the difference in my posts and his. I probably would have done better in English in school if it weren’t for the writing part. So sorry folks, you get what you get Monday I saw Dr Yang. My blood counts have been lower than expected but he’s not overly concerned at this point, just cautious. It means however that I have to keep having these lab checks done and getting transfusions. Some days I feel like their just testing the boundaries of how much they can inject in me at once. But its all for the greater good so I continue to endure. I have another lab check today with the results below and Friday. I will have another chemo and lab check on Monday the 18th and then as of now that will finish this phase of chemo for a couple weeks. On the 26th, I will have a port placed and my picc line removed. It’s a fairly simple outpatient procedure and I’m looking forward to not having this in my arm anymore but I’d be lying if I didn’t say I was nervous about Dennis not being there when I wake up. Karmanos has been amazing though and I know I am in the best hands with the staff here. After the port placement I’ll get wheeled upstairs for Dr. Yang to do another bone marrow biopsy. My tolerance level for those and the lumbar punctures is reaching a disturbing level. The only nerves I have about the upcoming biopsy is the additional testing they are doing with the marrow. They are going to run a test called an MRD test which basically looks at the marrow at a micro level to view the cancer cells. We of course are hopeful and believing in positive results but I think that test result is what I am the most nervous I’ve been about. The anticipation certainly doesn’t help either. As long as all those results are good I’ll move on to the next phase of chemo. We don’t have a start date for that yet cuz its all pending these results. Dr. Yang again confirmed that as of now I will not be able to return to work until the end of September or beginning of October when I finish this “aggressive” round of chemo. Unfortunately that means I’m still a couple months away from having some type of normalcy return. Until then I will continue to try to update this blog as much as possible. Some days I have more energy than others but I will do my best. Plus there’s the part of hating writing and top that with my disgust of talking about myself. We’ll see how it goes. Thank you as always to everyone who reads this blog....your prayers and support for our family is what continues to push us to believe in the positive. Bloodwork Results White Blood Cells (WBC 4.0-10.0): .6 Hemoglobin (HGB 11.5-16.0): 7.3 Platelets (PLT 150-500): 3 Transfusions Blood: NO Platelets: YES
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