Another bend in the road...

Well, the thing about cancer is that it is unpredictable. If it were straightforward and clear, there would be a cure, and everything would be much more simple. My FIL had an old colleague look at John's biopsy slides and she reported that there is the presence of other cells that are not present in Hodgkin's disease. Basically, the way that Hodgkin's disease is identified is by the presence of certain cells called Reed-Sternberg cells. Upon initial inspection, these cells were present, but there are these other cells (cd20) that are also present. So, the bottom line is that his diagnosis is not as simple as it first presented itself to be. You can imagine my disbelief in finding this out. All my previous worries began to flow back like the flood gates had been opened. I felt like we were finally reaching a place where John could begin treatment and on the road to recovery, and now they were telling us he had something different.

They have diagnosed him with a so called "Greyzone Lymphoma." Basically, he has the classic symptoms of Hodgkin's, but he also has the presence of these cd20 cells,which are present in b-cell lymphoma. Since this is a rare form of lymphoma, treatment is tricky.

We are lucky in many ways though. The chemo that treats Hodgkin's has not shown to be effective on this greyzone lymphoma. Had John started treatment without knowing this, he could have potentially gone through the whole cycle of chemo without it working, and perhaps having to undergo all the diagnostic tests again. In addition, my FIL found a study at NIH that looks particularly at treatment for this type of lymphoma. We spent most of today with the researchers, talking with them about the treatment and study.

Tomorrow will be another long day. We'll be heading over to NIH in the morning, where John will have additional blood work, x-rays, CT, and then have a blood transfusion (he's very anemic and this will help with his fatigue). Friday he will meet with the doctors and begin chemotherapy.

The treatment is pretty rigorous and there are many different steps in a cycle. He will undergo 6 cycles, which are each about 21 days long. One stage requires him to return to the hospital every 24 hours for each dose, and another requires him to give himself shots and have his blood drawn every other day. I hope that once we get through on cycle we will get the hang of things, and it will become part of our daily routine. It's complicated and overwhelming, but I really feel that we are so blessed to find such a successful study.

I have no idea what the future holds right now. John has to figure out what will happen with work and if he will have to take a leave of absence. If he does, I may have to work part time to supplement his income. The doctors say that people generally feel pretty good and respond well to this treatment and continue to work. The only problem is the visits to the hospital and John has very few sick days left. I know that things will work out and that we will be provided for. The unknown is always scary, but I have to have faith that things will be okay. We're hoping that John will start feeling better after his first treatment, and the doctors are hopeful that he will.

I'll be sure to let you know how things are going. Thanks for all the support you guys have been providing! I really cannot say enough about the kindess, prayers, and support that I have received in these last few weeks.

I know a girl (or many)

that is obsessed with fabric. Over the weekend, I "shopped" for fabric. And by shopped, I mean, I went to every site known to man and filled my cart up with fabrics I've been dying to have. I only ended up buying these fabrics from an etsy seller. I cannot wait to get them! But there's so many good ones out there and I wish upon all wishes that I could have every single one of them. Being in my current situation, I've decided that spending a whole lot of money on fabric might be a little excessive. I only bought the DS fat quarters because I deserved it damnit.

Yesterday I went to put the clothes in the dryer, only to find out that the washing machine won't drain the water. This is the second time it happened in 3 weeks. We had a company come out and fix it the first time and it was covered under our home warranty, but we still had to pay a $100 deductible. It worked for a while, but decided that it would stop yesterday, in the middle of the wash cycle, full of towels. Just my luck. So I squeezed out as much water as I could and put all the towels in the dryer (which luckily still works). However, the towels were too soaked and heavy for the dryer and the dryer proceeded to shake like crazy. The genius in me came up with the great idea to hang a clothes line. By this time I'm a hot sweaty mess and swearing like a sailor. I drag all the towels outside and as I hang the last towel up, the line breaks, leaving me with wet soapy towels encrusted with fallen, dried leaves. Eventually they made their way onto our fence, where they are sitting, and will still be until someone comes to rescue them (and it won't be me!). So after this fiasco, I decided I needed some fabric. Nothing like some fabric shopping therapy to soothe the soul.

Anyway, I was wondering if anyone wanted to do a personal swap. I'm just about out of all my 30's repro fabric squares that I got from another swap. I've been using them to make my headbands, and I'd love to have some more. I don't need huge pieces, actually the 5" squares worked out well. So if anyone has some and would like to do a swap, just send me an e-mail to katiebhandbags@gmail.com . I'd be willing to send you some of my thrifty fabric finds, or a headband, or pretty much anything I make. Or if you have some extra of this fabric, or some other Joel Dewberry laying around, I'd love that too.

I really feel fabric crazy right now. I just can't justify buying so much when I already have a lot. Ok, so if anyone's interested, just shoot me an e-mail!

Hooray!

All your thoughts and prayers must have worked. The cancer did not spread to the bone marrow! I cannot tell you how relieved I feel knowing that. They said the results would not be back for 4 days, but apparently my FIL has some major power of persuasion.

Today we had a visit from a home health nurse. She showed me how to flush John's PICC line for chemo. That was an interesting experience. I never thought I'd be doing something like that. It's simple and easy enough, but strange nonetheless. I guess you could start calling me McDreamy.

John had to have another biopsy surgery yesterday. The sample that they retrieved the first time was too fibrous and it was hard to get a good read on it. Luckily he didn't have to stay overnight and was able to rest comfortably at home. He's tired, but feeling well. I'm tired because I kept waking up to check on him. Everytime he'd cough or move, I'd say "are you ok??" He'd respond, "I'm fine, just go back to sleep." Of course, easier said than done, and now I'm really feeling it. I would have taken a nap if I hadn't been so consumed with trying to clean up for the nurse. I didn't want her to think we were complete slobs. I wonder what she did think of our house anyway. It is a huge mess. One that I'm willing to live with for the time being.

Anyway, all is well for now. We'll probably meet with the doctor next week to discuss chemo options. He'll probably have the option to either do a less intense treatment for longer, or a shorter one that is more frequent. I have no idea how that will work out.

I'm glad to be past all the initial tests. They think that it is probably Hodgkin's disease, but we'll know for sure (hopefully) in a couple of days. Once the chemo starts it'll probably be a whole new journey.

I wanted to say thanks again for all your kind words. They really have helped me get through the initial shock of it all! I'll probably return for some regular crafting posts this week. I'm finally starting to feel like I'm not running around like a chicken with my head cut off!

Yet another headband

My mom came for a quick visit this weekend. I was definitely glad to have the extra help around the house and I was able to relax a little. I also fit in some quick and made about 25 more headbands. Hopefully I'll start making something else soon so you don't get sick of these. There's a few more in the etsy shop, and I'm keeping a few for my show in November. John stills wants me to do the show, but I think it'll depend on how his treatments go. There's no telling how he'll be feeling, so I'm not sure I'll be able to do it or not. Anywho, nothing really new to report. We have a long day tomorrow with the bone marrow biopsy, meeting with the doctor, and an echo cardiogram. Pheewww. Wish us luck!

Thank You!

I am overwhelmed at the kindness of bloggers. Those whom I "know" and those unknown to me. I appreciate every kind word, prayer, and support that all of you provided. I was amazed to visit other blogs and see my name mentioned. I truly am overwhelmed by the response and I cannot thank you enough. Reading your comments has really eased my mind.

John had his biopsy on Friday afternoon. He spent the night at the hospital and was released Saturday. He's recovering well and is just tired and a little sore. He went into work this morning and came home for a quick nap at lunchtime. I think it is really hard for him to not be as active as he is used to being.

He will have his bone marrow biopsy on Wednesday and also probably start treatment. We should have the results of Friday's biopsy either today or tomorrow. I just pray that the cancer has not spread to the bone marrow because that would open a whole other can of worms.

I really want to thank all of you again. Your encouragement and sympathy have been awesome! I'll update when I can, probably sometime after Wednesday.

nightmare

I've been thinking about this post all night, and I don't even know where to begin. Yesterday, we got some of the worst news possible. I feel like I'm in a dream, and watching my life from outside my body. John has been diagnosed with stage 2B Lymphoma.

John's symptoms started a few months ago. He had a persistent cough for about 2 months, and John attributed it to some sort of bronchitis. After it continued, I nagged him to go to the doctors, but it was upon the insistence of his parents that he finally went to see the doctor's. This was on Saturday. He also had a chest x-ray which ended up showing a mass in his chest. John's father is a doctor, and was able to pull a lot of strings to have John seen ASAP. Yesterday we spent the entire day at the hospital, meeting with the doctor, and John having a PET/CT scan performed. Luckily his mother was able to watch Isaiah so that I could be with John the entire day. It still really feels like a dream.

So now I'm not sure what the future with hold. On Friday John will have a biopsy to confirm the doctor's diagnosis which will dictate which type of treatment he will need. He will also have a bone marrow biopsy next week to make sure that the lymphoma is not in there. Most likely, John will start radiation treatment late next week.

Right now I am feeling so many emotions. I am encouraged by all the support we have, all the new technology and advances in medicine. I'm having my good moments, and I'm having my bad moments. I feel stressed to think about what will happen financially. John was working 2 jobs so that I could stay home with Isaiah. I'm not certain what will happen with this situation. It depends on how John handles the treatments. If he does not do well with them and is unable to work, then we'll have to look into disability and other programs. If need be, I will have to go back to work. I feel lucky that we're going through this with people that will help us if we need it. I can't imagine families that have to go through this with nothing. I feel blessed to have Isaiah because I know that he gives us purpose and a major reason to fight this. I'm trying not to get too ahead in my worrying, because we're really not sure what type of lymphoma, what kind of treatment he needs, etc. I'm just trying to take things one day at a time.

So, for now, I'm here. I'll probably be sewing and keeping up with my etsy shop to keep my mind of things. I'll check in from time to time, but just not as regularly.

I also wanted to mention all of John's symptoms. If you or anyone else you know has these, please get checked out. Persistent cough, excessive itching, a sizable weight loss, and night sweats. John thought that these things were irritating, but livable. He doesn't feel sick or tired, and otherwise looks like a healthy person. Looks can be deceiving.

Quilt in Progress

I'm taking another trip to NY on Friday for a few days. Isaiah and I are flying up with a friend of mine from home who lives down here. My oldest friend's (I've know her since I was 2!) daughter is turning 1 year old on Saturday. Since I didn't already have enough going on, I thought that the little birthday girl needed a small quilt. I spent much of Saturday and Sunday working on this. I originally had 9 blocks, but decided that was way too big and only ended up using 4. So, I'll have enough to do another small quilt, or make 5 doll quilts. We'll see how that goes.
This is only the quilt top, and I still have to quilt and bind it before I head out on Friday. (Sorry the pictures aren't so great). I'm having trouble deciding how I should quilt it. Any suggestions? It probably has to be something simple as I don't have a walking foot. I was thinking about maybe hand tying it, but I'm not sure how that will come out. Ugh, I have no idea why I start these projects with such little time left! I know it the end it'll be worth it because it's a handmade gift made with lots of love.

Hope you all have a lovely start to your week. I'll be waiting around all day for the washing machine repair man to show up. Until then, I'll be sitting under piles of dirty laundry. I think a Starbucks trip might be necessary....

more headbands

My posts may get a little boring as I am doing nothing but sewing headbands. Here are a few more that I completed during Isaiah's nap. Pinks, yellows, and reds. Now if only I had some orange fabric. Seems I'm lacking those in my stash. Anyway, a few of you asked how they're secured and the answer is there is a piece of elastic on the ends. Here's a pic for those that are curious. So that's it. Oh, and there's a few available on etsy.

linen love

patchwork + linen = love obsession

I've been admiring the works of other that use linen for a while. It seems to be a popular choice. But, the linen at my Joann's is $14/yard, more than I am usually willing to pay for fabric. Thank goodness for labor day weekend sales and coupons, because after my 40% off, I walked away with 2 yards of dreamy linen for $17. I've been sewing and in love ever since.

I thought headbands would be a safe first project because you don't need to use a lot of fabric. Now I can't stop sewing these. I figured these would be good smaller items for the craft fair, and since I'm loving them so much, they might also appear on etsy. We'll see how long this obsession lasts. ( I already have about 6 more waiting to be sewn downstairs!)

thank yous

Since yesterday was a major cleaning day, not much crafting was accomplished. But I'm hoping since our house is semi-spotless now, I'll have a more free mind for cleaning. I've been meaning to do a thank you post for a while now. Before I left for Florida I was lucky enough to win 3 or 4 various giveaways, including a free yard of fabric from Sew, Mama, Sew. Of course I picked some Denyse Schmidt Katie Jump Rope and now I'm yearning for some more.

The very talented Brianna sent me a package full of goodies. Several of her gorgeous pendants, a tote and matching tissue holder, and a cute jar filled to the brim with various trims and ribbons. If you don't know Brianna, go check her out as she makes some beautiful pendants and is starting to show off her new sewing projects as well. Thank you Brianna!

I also won a giveaway from the equally talented Mary. She was cleaning out her craft closet and needed to clutter someone else's (jk Mary ;)). She sent two huge pieces of fabric, which I love, some patterns, and scrapbook items. I'm thinking Isaiah may get some curtains out of the ball fabric, seeing as he still doesn't have anything on his windows a year after we've been in our house.Finally, the lovely Kirsten sent me these already assembled 9 patch blocks as a thank you for the package I sent her. I was so excited to get these after I saw her 2 day quilt. Eventually I'll have a 2 day quilt of my own. I was quite the lucky gal. Thank you Brianna, Mary, and Kirsten!