An Update on my Health

An Update on my Health

https://www.youcaring.com/fundraiser-widget.aspx?frid=682888

Hello everyone! I’ve had a lot going on recently with my health, so it’s time to give you guys an update!

On Monday, October 17th I went into KU Medical Center to have my 10th bone marrow biopsy. I have to be sedated for these biopsies because they truly are one of the most painful things I’ve ever experienced. Paul and I drove up there because I need a driver when I have these procedures. I’d have to say that of all the biopsies I’ve done so far, this was the quickest of them all. I’m telling you, I don’t think this thing even took them 5 minutes. When the nurse told me they were done I almost couldn’t believe it. It’s usually a two part procedure, first part is getting a sample of the marrow, and the second part is coring into my bone to get a sample of the actual bone. I thought for sure they meant only the first part was done, but NOPE, the entire thing was finished. They joked around saying that this was a difference from having a nurse practitioner doing it instead of a doctor.

That Thursday I went up for my regular appointment and told me the results were cancer free and everything looked perfect. Always a great thing to hear.

Probably a few days before my biopsy, I took a shower and as I was drying off Paul told me I had something on my boob. Upon further investigation, it was a strange bump. Not much bigger than a bug bite but it certainly didn’t feel like a bug bit. I made Paul outline it for me, just to see if it grew or anything, so I could let the doctors know what was going on. I showed it to the doctors that Thursday that I got the bone marrow results. They were extremely concerned. I always hate when I hear the word “worrisome” come out of my doctors mouth because that is never a good sign.

Apparently he is friends with a dermatologist and texted him to see if this was something he could look at or because of the area would I need to see a plastic surgeon. He said he could see me and texted my doctor to have me come in the next day at 12:50. I had my friend Amber with me who had a doctors appointment of her own that was important. So I drove us home and planned on driving back up there by myself the next day.

Of course with my luck, nothing ever seems easy. I managed to miss my alarm that morning and woke up just a little before 11 am. Definitely not enough time to get myself up to Kansas City which is a two and a half hour drive. So I finally got the number of the doctor’s nurse and left a message for her to call me back. I didn’t want to make the drive up there for them to tell me that I can’t be seen. Finally, around 12 pm I got a call back from the nurse who told me to just make the drive up there. as long as I could get there before 4. Since it was only 12, that was no problem at all.

I get there and I’m told they’re going to do a biopsy of the spot. He numbed me up with lidocaine and actually ended up taking the entire bump off which wasn’t much larger than a dime. He said he was going to send it off to the lab and they would give me a call or let my oncologist at the clinic know the results. I also found out I have Rosacea on my face, which explains why my entire life my face has always been so red like I’m embarrassed all the time, and you don’t even want to know how red my face gets when I am actually embarrassed lol.

So the only instruction I really got about the spot was to put Vaseline on it. Friday, Saturday, Sunday it looked perfectly fine. Monday it started getting red and infected. I tried to call the clinic who told me to get in touch with the dermatologist. I called the number that the clinic gave me, which sent me to a voice mail and I left a message. I never heard anything back from them, but Thursday was my regularly scheduled appointment anyway.

Thursday, October 27th I found out that the bump on my breast was cancerous and from my leukemia. He said sometimes the immune system has the ability to keep your bones clear of cancer, but might not be able to handle the cancer on your skin.

From here we had a few different options. I could go do some chemo treatments called Dacogen. It’s supposed to be a mild chemo, doesn’t make you very sick but last time I did Dacogen I ended up neutropenic and was up in Kansas City for over three weeks. But the good part is that I can do Dacogen here in town so I won’t need to spend so much time in Kansas City. As much as I love my doctors in Kansas City, it does get tiring sometimes traveling up here. They also would look to get some additional white blood cells from my mother when she comes to visit me at the end of November for Thanksgiving.

My second option would possibly be getting another transplant. Since I don’t have a donor on the registry I would have to do a half match with my sister. So that means another month in the hospital followed by three months living in Kansas City. My mother would need to fly down and live with me to be my caretaker which I’m sure she absolutely wouldn’t mind doing but I hate that I take away months of a time from her life.

He was leaning more towards the dacogen side, but either way I was going to need a port. I asked if I could have a power port installed so that I could keep it in for longer than a PICC line or a trifusion since these random tumors keep occurring when everything is going great for me and he thought that was a good idea. They scheduled that for me November 3rd. In the mornings the doctors all meet together and talk about their patients. My doctor needed to present my case to the other BMT doctors and see what they thought I should do for treatment. Whatever the general consensus was, will be the treatment I would do. The next day I actually did hear from him and he said he wanted to do a completely different route.

Immumotherapy is kind of a new cancer treatment that seems to have promising results for people who have relapsed after a BMT and who also have issues with tumors. He actually brought this option up to me in July to try but because I didn’t have an active case of Leukemia at the time my insurance wouldn’t pay for it. Now that they’ve found another tumor he will be writing a letter to my insurance to have them pay for this new treatment. It’s not FDA approved yet so the drug will come right from the manufacturer. So with the insurance approval and the shipping from the manufacturer it might take a few weeks for me to actually start this treatment. He cancelled my port installation because he said it won’t be necessary with this new route he’s chosen. I’ll receive the medicine by IV every three weeks for 4 doses, then potentially every 12 weeks up to 60 weeks if it prove itself effective.

Honestly, I was really happy to hear this news. I know it’s experimental but if the side effects aren’t as bad as chemo and I can stay home, I’ll be very happy. It just sucks being sick all the time and away from my boyfriend and my puppers. They said that this could make my GVHD (graft vs host disease) flare up and since I’m already dealing with such bad joint pain that is managed well by palliative care I figure it shouldn’t  too bad. It certainly beats throwing up all the time, not eating, and having diarrhea.

I’m going up there Thursday. He believes he’ll have more information for me then with whats going on with my insurance. My friend Tiffany will also be flying in this Thursday. She orginally planned to be with my through my port installation but the plan changed after she booked her ticket. That’s okay though because I’m really looking forward to her visit and I’m glad she’ll be there as I’m getting more information and learning about this new treatment.

Ipilimumab for Patients with Relapse after Allogeneic Transplantation

This is the journal article my doctor read that inspired him to go ahead with this treatment. It’s definitely a hard read but if you wanted to learn more about this treatment, this is a good place to start.

Also, at the top of this post I’ve included the link to my YouCaring page, since I no longer have the gofundme account. Please take the time to check it out. I’m going to try to be diligent in updating it for anyone who donates or shares it.

Really there’s no amount that is too big or small and I get 100 percent of the proceeds. If you are unable to donate, if you could please take a second to share the link with your friends and family I most certainty would appreciate it!

Stay Tuned!

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My Aunt Barbie

My Aunt Barbie

Well, I’ve had an interesting couple of weeks to say the least.

September 21st I had planned to travel to Metropolis to visit my aunt. The day before I was leaving she called me to tell me she really needed me there. She sounded fine, so I didn’t think much of it. I took my time getting there, little did I know, It was almost the end for her.

That night I got there and visited with her, she woke right up and talked to me for an hour or so, they said she had been sleeping most of the day. We talked a bit and after she fell asleep I went back to our hotel for the night. Around 6 am I received the call that she had passed.

My aunt Barbie, I would definitely consider her my best friend. After my bone marrow transplant she made a facebook account and we were able to reconnect. We talked almost every day. She was one of the few people I felt like I could be completely honest with, because through her own trials, she understood my pain. Every day since then, there’s not a day that goes by that I don’t miss her or think about her. I so desperately wish I could tell her what’s going on with me right now. I wish I could tell her how much I miss her, how my days feel empty without her. She always called me her soul sister, I was her niece after her own heart. She even told me that the night before she passed. I don’t know why God decides to take some people so young, and I don’t suspect I will ever know. She was only 54. Much older than I, but surely not old enough to be so sick.

The days after were difficult. I drove home that Thursday and Daniel and I decided since we couldn’t afford a proper funeral that we would have a memorial service in the park. I set everything in motion on facebook and her friends truly came through for her. It was very beautiful to see how many people truly loved and cared for my aunt. Many people brought food for us all to share, another person brought their laptop to be able to play the song she wanted. Dust in the Wind by Kansas. I got up and shared some memories of her, and about 7 or 8 people did the same. We probably had about 40 to 50 people there. It was really beautiful and I can only imagine if she was able to look down and watch us that day how happy it must have made her heart.

 

http://www.aikinsfarmer-millerfh.com/obituaries/Barbara-Mcduffee/

Music

Music

In the last year since I’ve gotten sick, I’m finding that some music really just hits me hard. 

Love songs, songs about fighting and being strong. They hit me like a ton of bricks. I feel like the older I get the more emotional I become. Or maybe just through this I’ve gained the ability to feel and experience life more fully. 

I find myself not even be able to sing the words anymore, because they bring tears to my eyes. Songs about love just remind me how much I love Paul and how much he truly loves me. He makes every day more meaningful and even after all the scars I have all over my body he still tells me every day how beautiful I am. I am truly blessed. I found myself singing that Paramore song “Still into You” while we were playing Rockband, and I had to stop. I had to stop because it was making me tear up, and it would be very embarrassing to admit to my friend that I was crying just because I loved Paul so much. I can’t listen and sing along to the “Fight Song” by Rachel Platten because it just reminds me so much of what a fight this has all been. I had to fight long and hard to live. To just live like an “almost” normal 26 year old. 

I guess I won’t ever feel normal again. I will always have the physical and emotional scars of my journey in this life. I’ve even crying writing this. Sometimes I feel like it’s hard to cope with the sadness and happiness that I’ve experienced in the last year and a half. I feel like even though my physical pain is (almost) over, my emotional pain worsens. 

You learn so much going through cancer, but that leaves you empty when everything is over. They don’t prepare you for how different your life will be after cancer. There’s all these plans for “curing” and treatment but theres no plan for when it’s all over. I’m not sure how they’ll be able to prepare you though, and I’m not sure I’d want to hear about the emotional pain I’d go through after this while going through the physical pain of treatment. 

I might be able to go back to work soon. But I’m not quite sure I can emotionally and physically handle it at this point. The extra money would be great but moving on is hard. My joints still hurt every day. I have to take medication to help me function like somewhat normal human being. I always imagined when I was young, the older I got, the easier life would be. I’ve been so proven wrong by this. My heart aches for boys and girls that also have to go through similar experiences as me. It’s painful. Life has so many beautiful moments, but so many hard and painful moments too. I guess sometimes though, that’s what you really need to appreciate how fragile and beautiful our lives are. 

For anyone who gotten this far reading, please don’t worry about me. I’m still just trying to figure this all out and figuring out how to feel. I’m not sad, I’m just trying to cope and sometimes I just don’t know how. I feel like this helps though, it helps me at least get my feelings out and makes it easier to process. I think I’m going to email my therapist and show her my blog, I enjoy our sessions but maybe this would help make them even more meaningful.

I think I need to vent…

I was just talking to an old friend today about when I first got sick. I feel like I still have so much emotional damage still, even with the help of my therapist. We haven’t even broke the crust of my damage.

Everything happened so fast in the beginning. I didn’t even have time to process what was happening to me. It truly was one of the scariest feelings of my life. I often think back to a conversation with my dad when I first started truly started feeling the effects of my chemo. I told him I was tired, I didn’t want to do this anymore and he just looked me in the face and said “Mel, you’ll die. you’re going to die” Sometimes when you’re going to die you don’t actually feel like you’re going to die. Sometimes you just feel like you’ll always exist and that’s not really the case. I think back to all the people back then who kept me strong and kept me going. Mom, Dad, and Paul are the most obvious, but so many people reached out to me at a time when I really needed them the most. I needed their strength and many of my friends were happy to give it. I have people still reach out to me and their strength continues to keep me going.

I feel like so many positive things have happened to me since I got sick and I really can say my mom and I’s relationship really is what changed the most. I thought I was going to die having to live with her again and really it was the best thing that ever happened to us. Everyday I miss her so much and I know Paul does too. Many not living with us, but it would be so nice if we were closer but I can say I have any plans to move back to New Jersey anytime soon. Paul has such a good job and we have this beautiful house here, I just don’t think our quality of life would be the same of we were there. I can only hope that maybe one day my family will come to me. Even if it’s it a couple hours away. I’d take it.

A lot of my days I’m home alone and it’s pretty lonely. I have Yuna that helps me so much but she’s not the same as having a person here with me. But if I did have a person with me all the time I probably would want to be by myself. The good thing about having my mom here is we were together but seperate. She was here, but we didn’t have to constantly interact like I would need to if I had friends over. I feel like I’ve really become super anti-social lately. I just really don’t have an interest in interaction right now for some reason. My therapist says I need to fight that as much as I can. It’s not good to be anti-social. We need to draw from the strength of our friends and family. We need to have friends we can talk to and support us and our relationship doesn’t revolve around cancer. I think I have a lot of friends that are like that and would do that for me but I’m the problem, not them.

I watched a lot of episodes of Catfish today. Watching that show makes me so thankful that neither Paul or I was Catfishing each other. For those of you that do not know, Paul and I met on an online video game in 2007. So we’ve known each other for 9 years. I couldn’t imagine being with anyone else. Paul is truly the perfect person for me. My only wish is that we could have been together soon, but I believe that everything works it’s way out for a reason and maybe we wouldn’t be where we are now if I moved down here sooner. Cancer changed a lot in our relationship, I guess it really solidified things for him. Yo u know the moment I got sick he had to figure out if he was gonna be in or not. In this type of situation it’s not like you can be half in. It’s all or nothing.

I could probably write more but I think I’m done for the night. Stay tuned.

Pokemon Pokeball Crochet Pattern

Pokemon Pokeball Crochet Pattern

Today I’m going to share with you my pattern for my pokeballs. I’m going to write out the pattern and hopefully the next time I make one, I plan on taking pictures of the process. I do not work in the round like some people might when making something like this. I think it looks more seamless that way, but that’s just my option.

Materials Needed:

  • Worst Weight Yarn in White, Black, and Red. (I just used Red Heart Super Saver)
  • A few ounces of Polyfil
  • Size 4.0 crochet hook
  • Yarn needle

 

First I start with making the button.

Starting with white Yarn.

Start with a magic circle. ch 1, 7 sc in the round, FO leaving a long tail. I usually just cut off the tail from the magic circle because typically it’s able to hold it’s own.

With Black Yarn:

Start with the magic circle. ch 1, 7 sc in the circle, sl st to ch 1

Ch 1, 2 sc in each sc, slst to ch 1, FO leaving a long tail.

 

Sew white circle on to the black circle and sit aside.

 

Now for the ball!

 

Starting with the red yarn.

Round 1: Start with the magic circle, ch 1, 6 sc in the circle, sl st into ch 1. (6)

Round 2: ch 1, 2 sc in each sc, sl st into ch 1 (12)

Round 3: ch 1, *sc in next sc, 2 sc in next sc* around, sl st into ch 1 (18)

Round 4: ch 1, *sc in next 2 sc, 2 sc in next sc* around sl st into ch 1 (24)

Round 5: ch 1, *sc in next 3 sc, 2 sc in next sc* around sl st into ch 1 (30)

Round 6: ch 1, *sc in next 4 sc, 2 sc in next sc* around, sl st into ch 1 (36)

Round 7: ch 1, *sc in next 5 sc, 2 sc in next sc* around, sl st into ch 1 (42)

Round 8: ch 1, sc in each st around, sl st into ch 1 (42)

Round 9: ch 1, sc in each st around, sl st into ch 1, FO (42)

 

Change to black yarn

Round 10 and 11: ch 1, sc in each st around, sl st into ch 1, FO (42)

 

Change to white yarn

Round 12 and 13: ch 1, sc in each st around, sl st into ch 1 (42)

Round 14: ch 1, *sc in next 5 sc, dec in next 2 st* around, sl st into ch 1 (36)

Round 15: ch 1, *sc in next 4 sc, dec in next 2 st* around, sl st into ch 1 (30)

 

This is when I sew in the button, usually right on the seam.

 

Round 16: ch 1, *sc in next 3 sc, dec in next 2 st* around, sl st into ch 1 (24)

Round 17: ch 1, *sc in next 2 sc, dec in next 2 st* around, sl st into ch 1 (18)

Round 18: ch 1, *sc in next st, dec in next 2 st* around, sl st into ch 1 (12)

 

This is where I begin stuffing my pokeball. I like to make my pokeballs pretty firm but it’s up to you how firm or soft you’d like your pokeball to be.

 

Round 19: ch 1, *dec in next 2 st* around, sl st into ch 1, FO leaving a long tail (6)

 

I use the tail to sew the top of the pokeball closed.

 

Now if you don’t want to make your own pokeball, I actually have a listing on Etsy that you can own your own without going through all the work of making one!

 

https://www.etsy.com/listing/467797465/

 

September is Blood Cancer Awareness Month

September is Blood Cancer Awareness Month

I’m sure I don’t have to tell you the importance of this to me. 🙂

There is one thing I’d have to share with you all though.

Have you heard of the website http://www.bethematch.org ?

My Leukemia caused me to need a bone marrow transplant, but they could not find a donor for me. There are plenty of people out in the world in the exact same situation as me but maybe they don’t have a family member that is able to be there donor.

I’d beg everyone to please take a look through the information on this site and consider signing up to be a bone marrow donor. You might never get chosen, but you also might have the opportunity to save someones life. Sometimes a bone marrow transplant is the only thing that can help keep their cancer at bay and cure them.

Paul recently signed up to join the registry. All it takes is a short questionnaire, then they mail you a swab kit. You swab your cheek and mail it back. Within a few weeks you’re listed on the national registry, so what are you waiting for??! Go sign up!

Let me tell you ’bout my Best Friend 

Let me tell you ’bout my Best Friend 

My best four legged friend. 

I had been wanting a dog sooooooo bad. When I first moved in with Paul a little over two and a half years ago, he was renting our house and no dogs were allowed. Paul told me how he wasn’t really a dog person, so I let my dream go for a while. 

When we built our house, I was determined to adopt, but of course. As anyone reading this blog already knows, I got sick. Actually, the day I went into the hospital was the day they broke ground on our house. Paul moved in on July 31st but I was still finishing up my 100 days until August 31st. 

Since I had a poor immune system and needed to be on neutropenic restrictions for the duration of my 100 days, a dog was out of the question. The doctors told me I would need to wait a year from transplant to get a pup.  

I was on steroids for my graft vs host disease (GVHD) but they had been tapering me down and I was at a very low dose. In March I decided to ask my doctor when it would be okay for me to get a dog and he said I could! I was ecstatic. Paul wanted a puppy so we could train him/her and give them their own original name. Of course, the day I came home I was searching petfinder to find my puppy. We decided we wanted to get some kind of lab. 

A few days later my friend Amber and I decided to go to the Joplin Humane Society. Paul said only looking! No buying! 

I found a puppy named Happy (I think at least) online that I wanted to check out. She was a lab mix with fairly long hair. Super cute, but she found a happy home with another family the day we were there. They didn’t seem to have many puppies, so my inpatient self was going to need to wait. 

I noticed a cage of little black dogs but there wasn’t anything written on their cage. I asked the lady about them and she told me they were pit bull mixed that were about 11 weeks old. Because I’ve been sick I tried to pick the least energetic one. Her name was Renee. She was so cute and playful. I texted Paul a few pictures and begged him to let me bring her home. One of the staff told me she was recused from a hoarder situation and they tried to hide her and her brothers and sisters in the attic to keep them from being taken away. 

I told Paul the hoarding story and he said and I quote, “that’s awful. Take that puppy home.”

Look at that face. How could you not want to take her home?! 

She wasn’t big on photos back then. But I finally got my puppy! We decided Renee wasn’t a good fit for her and rename her Yuna, or as I like to call her Yuna Bug. 

She’s been my number one companion ever since that day. She naps with me, comforts me when I feel sick, follows me around the house, she even tries to showers and baths with me. Though sometimes she drives me a little crazy. I wouldn’t want it any other way. Today she actually slept in her crate for an hour or so this morning and it was so out of the normal that she wasn’t sitting next to me I thought something was wrong with her. She brings joys to my sad days and is ever so patient with me on my bad days. She keeps me company when Paul’s at work and keeps me active when I think I’d rather just lay in bed all day. She just brings me such joy. 

Her puppy stage was difficult. I had a hard time keeping up with her but my girl is a fast learner. House training her only took two or three weeks. She minimally had issues with her crate (but mostly Paul let’s her sleep on the bed with us, one of his rules he’d swear he’d never do). 

Wanna know a secret? ………. 
Paul is totally a lover. He loves her just as much as me. Every day when she greets him all excited and happy after his hard day at work, I know she brightens his day.

Now my little Yuna is 7 months old. When we first adopted her she was 11 pounds, now she’s a whopping 41 pounds. 

Shes made lots of friends along the way. 


Though there’s been times we’ve had to spend a part for months at a time, Yuna doesn’t mind, she still loves me all the same. We all have flaws, even Yuna has an obsession with my yarn, jumping into mud puddles, ripping the stuffing out of all her toys, chewing a huge bone in the middle of the night, hogging the bed, bejng crazy when she gets a glimpse of someone who might possibly pet her (seruously, it’s like her drug), shredding up paper, getting stuck on everything imaginable when she’s outside on her chain but I still love her. 

She has a special place in my heart.