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 Today is Day -2 of stem cell transplant. For 6 days before I get my new stem cells they give me high doses of chemo to kill anything (and everything). This should kill all the remnant spots of my lymphoma. However, it also kills my blood counts. That is why they give me good stem cells after.  So for the past 4 days I have been hooked up to a machine getting different kinds of chemo. My particular cocktail has the acronym BEAM.  Day -6 was a drug called Carmustine (BICNU). It was the easiest. It was a one time thing and lasted only a couple of hours. Then I was free to roam the unit or just hang out in my room.  Days -5, -4, -3, and -2 are for Etoposide and cytarabine. I get them every 12 hours. The Etoposide lasts for 2 hours and the cytarabine lasts for 1 hour. I do them at the same time, so it's really just 2 hours of my life twice a day. The challenge is that is it as 10. Morning 10-12 is fine, but night time 10-12 is hard to get a normal sleep. But then again, ...

 On February 15 and 16 I entered the oncology outpatient clinic at UCSF to harvest stem cells. The process was not near as bad as my mind had made it out. Isn't that typical for me? On Sunday, February 12 I gave myself shots to develop stem cells in my body. I did this by myself. I was oddly proud of my own power to do this thing my brain made so hard! I did those shots each night through the 16th.  On the afternoon of the 15th I also went to get the catheter in my neck. Again, I was so freaked out, but it was smooth. They allowed me to walk into the operating table. I got up on the bed and they did an ultrasound on my left and right side to determine the best placement. Given I already have a single port in my right chest they went to the left side. I laid on my right and they numbed me with lidocaine. Basically the same as at the dentist office. Next thing I know they are pushing and say "great, it's done". Seriously? That was it? Crazy! That night was super hard to...

 

 It's been a long time since I blogged. It has been seven months of ups and downs, encouraging news and then dashing news. I did manage to take some pictures of my hair growth, but I will post that in a different blog post.  For now, let's get caught up. In January 2022 I was told "it's classic lymphoma, that's the easiest to get rid of. You'll be done by the end of summer." So I followed the plan. I did the chemo. I followed up in July with a PET Scan. And nope... not gone. Vastly reduced, but not gone. So another biopsy was scheduled. The needle biopsy again showed nothing conclusive (I will never do that again) so I was referred to have a surgical biopsy done. This one showed there was enough to not delay in more treatments. But what treatment to do? This became something my local, Santa Cruz, oncology couldn't do.  So in September I was referred to both Stanford University and University of San Francisco (UCSF). Both teams looked at my PET Scans, b...

I have to stop for a moment and acknowledge the best of the best. I married this man almost 27 years ago. I was cute, healthy and energetic. We have been though kids, job loss, friendship disappointments and everything imaginable. The one thing I never wanted him to go through was me being weak, unproductive and unable to keep up with him. That has come. My cancer has stripped away a lot from me. But it also has taken it's toll on him. He has had to do more cleaning, cooking, pet care, child care, all the while working a full time job and keeping our bills paid. Add onto that he is trying to stay positive and encouraging for me. He is amazing! I am sad he has to go through this, but I wouldn't want to go through this with anyone else. My husband is the best of the best. I love him so much. And I like him too.  Thanks, Rick! Hopefully this will be the last few months of horrible and we can enjoy several more decades of fun! 

 The past month or so my hair has not just continued to thin, but completely fall out. I was holding on to as much as I could, but I continued to look more like Gollum from Lord of the Rings. Finally last night I had enough of it. It was depressing. So I decided to just take it all off. Rick helped me and we shaved my head.  Now I am wondering why I didn't do it earlier. Yes, I miss my hair and can't wait for it to grow back. But I feel less witchy (or a sickly hobbit type) and more feminine.  I have a blood test and PET scan scheduled for next week. If they find my white count up and no cancer in my body I am allowed to go back to my life (shopping, restaurants and more importantly, church)!! I have my prayer warriors praying!  

 This week I celebrated my 27th wedding anniversary with my amazing husband. He is always great at taking me on trips or buying me gifts that are just perfect for me. However, this year is so different. 2022 has sucked. I am on chemo and dealing with depression and anxiety. So when he asked what I wanted for my anniversary gift all I could say was "nothing you can give me". Here's my top 10 wish list (in no particular order): 1. To be able to eat at a restaurant. 2. To have a nice glass of wine and feel normal. 3. To plan a vacation this summer. 4. To sit in the sun and no be burned after 5 minutes. 5. To be able to go to church. 6. To go shopping (grocery, clothes, whatever). 7. To be able to sleep normally and not need so many naps. 8. To have hair.  9. To feel pretty instead of like Gollum the Hobbit.  10. To exercise, hike, swim, walk the beach... move without pain and exhaustion.  I have realized that I don't need more things. I am ready to purge and get rid of ...

Chemo makes many changes in your body. The two hardest emotionally are the skin changes and hair loss.  They tell you about the hair loss, but nothing can really prepare you for it. I was especially taken by surprise because I had SO MUCH hair to start with. I expected it to thin a little, but my hair is gone, gone. Which brings me to the questions: 1. Do I shave it off now or wait longer? and 2. What is it going to look like when it comes back?                  The thing I wasn't told about is the skin changes. My skin is flaky and sensitive. The color of my skin is changing. I look older. I have never been good at skin care or makeup. I feel ill-equipped. And I feel like I am an embarrassment to my husband and kids. Vain? Absolutely! I like looking young. I want to look like me again. I am curious what will happen when I am off chemo. Will I ever look normal again? 

 I have two more chemo treatments. It is something my dear husband keeps reminding me. Whats hard? Everything. Yes, I know I am very blessed to have the treatments only lasting 2 months (8 treatments total), but every treatment is harder. I am more exhausted, more emotional, in more pain and more lonely than I have ever been in my life. The thought of one more whole month overwhelming and anxiety driven!  The other day someone asked me how I am doing. Before this diagnosis I would have just said "I'm fine. How are you?". Now I am aware that I don't have time for fake. I answered honestly, "This sucks. But I'm alive!".  Yes, I am almost done, but it is still not easy!  I have the blessing of a summer break. A real summer break. I am able to relax, sleep and recover. It's great. Unfortunately that too brings on mixed feelings. It is fantastic to have time to recover and I don't have to worry about deadlines and meetings. However, I don't have d...

  With each round of chemo I get more and more tired. I was getting concerned that maybe the PET Scan was not accurate. But my nurse explained that chemo is like the battery on the phone. When the phone is brand new it holds a charge for a long time and with each day it holds a little less and less.  With chemo I was able to bounce back and feel normal faster at the beginning. Now that I am on 3.1 (which means #5 visit) I have less bounce back. I have had so many naps the past few weeks. I am fighting headaches more. All of this has caused me to have more anxiousness in my heat.  But I am done with 3.1. I only have 3 more to complete! The next few weeks will be hard, but I will make it. And then I can resupply my battery without the depleting of chemo! 

  I have found a new motto that I am loving! I have made some friends who have also been dealing with cancer. Their cancer is different from mine, but it's still hard. I have also been reading social media more (not much els to do when you're home bound) and am seeing hurting people. They are hurting. I am not worse off than anyone else. I am just different. I am learning compassion through this trial. I hope I can show that to everyone!

 A few weeks ago I got another PET Scan. The results were better than they thought it would be.  The doctor said there were three possible outcomes.  Most improbable (and the one I was hoping for): total healing and no more chemo!  What he hoped: most of the cancer is done and there is only 2 more months of chemo for the remnant. But only 2 more months instead of 4 more! What could be, but least likely: Nothing changed and we need to rethink the level of chemo.  The results? What he hoped! There is very little sign of cancer; just enough to know that we can kill it DEAD with 2 more months. So Chemo 3.1, 3.2, 4.1 and 4.2 are scheduled through to the end of June. I'll have another PET scan in July. And the hope is for a fully clean bill of health by August 1. 

 Each day I lose more and more hair. The more hair I lose the more self conscious I get. My family has reminded me that the thickness of my hair has been a blessing. My hair is super thin, but many women have this normally.   The length of the hair made for quite a mess in my house. The vacuum cleaner took over an hour to detangle my long hair from it. I pulled out long strands from my shower drain that was causing the slow draining water. Since I am not allowed to be around people due to my low white blood count I decided to cut my hair on my own.  Gotta love Youtube tutorials!                                              Unfortunately I have lost a lot more hair since that haircut. I am contemplating cutting again and going much shorter this time. Meanwhile I am wearing a lot of hats. Here's hoping my hair thickens back up after chemo is...

 My fourth visit to the chemo clinic is complete. I got to have a return nurse, Nicole. She is awesome. She is empathetic, and yet so pushes for me to keep working and exercising. Keep moving and staying healthy is the main goal! All the nurses here are awesome, each has their special way of connecting. I am very blessed to be with this group of nurses in my Santa Cruz area!  There is some god news coming up. My white blood count stayed high two sessions in a row, so I won't need that booster shot this week! The shot itself is a shot, not fun but not horrible. However about 5 days later my bones hurt horribly and it's very hard to move peacefully. So I am glad I don't have to have that this session.  I am also at the 1/3 mark. I get to have the PET scan this week. This PET scan will show if there is improvement or not (praying for improvement). It will inform the doctor as to if he needs to keep the chemo-cocktail as is, drop one (he thinks this is most likely) or drop a ...

 OK. So, I already wrote a pot of how bad 2022 really has been. But believe it or not, it's gotten worse. Much worse. On Thursday Rick took advantage of me being at the doctors and not on a meeting in the kitchen area to do the dishes. He's pretty awesome that way! He loaded the dishwasher, washed down the sink and counters and headed back to his "office" to do work.  I came home from my appointment and saw water in the driveway. It was odd because it seemed to be coming from under the house. I walked into the kitchen to find about an inch of standing water. I opened the dishwasher to get it to stop and found the water was coming from a hose under the sink.  "No big deal," thought. "I''l just shut off the valve to that hose." Well, as I went to turn the valve and burned my hand with the hot water the whole valve broke off and now I had a hose flowing at full blast with burning hot water.  At this point I am screaming for Rick to come help m...

 A few different feelings and  revelations have come to mind this session of chemo.  One is that I was ridiculously happy when my blood test showed that my white blood count was high enough to do chemo. Think about it. I got blood taken and they tell me I am healthy enough to allow them to put poison in my body. I know that is so weird, but honestly, I am just so happy that I can get things over with. The sooner I do the treatments the sooner we can stop and my life can begin again. Another really odd revelation I have had is that I miss people. I've been the odd ball in my Mosely family. I really like my alone time. I do not prefer hugs and touching and being around a ton of people. At least not to have to talk to (lots of people at Disney is fine if I don't have to talk to them or interact with them!). But I am finding that I am getting a little stir crazy being with just me and my family. I want to go to the beach with my friends. I want to drive over the hill and see ...

 I think I have said before that I realize I am prideful. I love my hair. I especially have liked it for the past year and a half. It is long and colorful. I know how to wear it curly, wavy and straight now. I've grown into this hair. The one thing I hoped was since they didn't expect the chemo to last more than a few months that maybe I could keep my hair. Unfortunately, that doesn't seem to be the case.  Today I went to take a shower. I combed out my hair and there was a large pile of hair on the counter and floor. That would be bad enough, but then after the shower I found a large pile at the bottom of the tub.  Sadly, when I was combing out my wet hair and another large pile came out. As I sit here typing I rubbed my head and more is falling out. I don't have any big patches of bald spots on my head. That's a good thing, but I am starting to think about what I am going to do when it's all gone. I don't really want to do a wig. The only time I have ever d...

 On March 25th I had Chemo 1.2. The port was more painful, but I forgot the numbing agent until only 45 minutes before. I should do it 90 minutes before. So now I know!  This time I have Nurse Catherine. She is a Disney fan. In fact she is a Magic Key Holder. So we got to have a few great conversations about my happy place. Sad part is I realized I only talk about Disney, my children, and my job. I am not deep! hahaha  This time I had a fast and easy time with each of the medicines. I got out a half hour early and was pretty happy. To kill the time I read my book. I checked my work emails several times and emailed with my partner and some parents and then watched some Hulu.  I did have another weird reaction. Luckily this one happened while I was in the parking lot waiting for Rick. My shoulder (not the port side) had a sharp pain and it traveled down my arm and several of my fingers and thumb went numb. I went right back into the office and asked to see a nurse. The...

 The week I was supposed to get Chemo 1.2 I got my regular blood test and they found that my white blood count was low. This delayed the chemo by a week and I had to have 3 rather painful shots. To say this was a happy moment was NOT happening. I was so angry. I had scheduled out the next 4 months and this messed up my plans.  I am learning that I am not ok with last minute changes. I always thought of myself as a go with the flow person. But this disease is opening my eyes to a lot of my flaws. I like to be in control of my schedule. I like to be the one people can count on. I like to be able to show confidence and competence. But I feel like I am showing weakness and inability. I hate that.  I have kept my illness from many people. Of the ones I have told I have only 2 or 3 who really know what I am feeling. I am very private and self sufficient. This disease has forced me to rethink my stance. It is very challenging to become vulnerable like this. I don't know how to d...

Each round of chemo consists of 2 sessions. So Friday, March 4 was session one of the first round. It was the first time I had my port used. I had no idea what I was walking in for. The lessons were great, but there is still so much unknown about the process.  I had a great main nurse. His name was Ray. He was funny, gentle and patient as I asked questions. However, he wasn't the only nurse. These nurses here are such a strong team. They hear the beeps from the IV or see that you have a question and they come even if you are not their patient. It was such a different experience from when I was in the hospital (nothing against hospital nurses, but I felt I waited for help longer than I'd like because only your own nurse can come). Many of the oncology nurses had had these sweatshirts. It is very Santa Cruz and says Nurses Are Swell. These nurses swell for sure!!! The port was amazing. I was really questioning if I had made the right decision, but let me tell you this was the BES...