Monday, July 25, 2016

…..and Dirty Socks

Things were going pretty well after my first dose of chemo. After my first panic attack ER trip, I did end up in the ER again with a possible blood clot in my leg. I had called the VNA nurse on a saturday morning, and after listening to my symptoms, she (regretfully) sent me into the ER. Of course, being a Saturday, they were packed - one woman who fell, one guy who had gone over the handlebars of his bike, an older woman who didn't really know why she was there at all. For the fact that I came in with a possible clot, it took them forever to get my ultrasound done. The tech was great - we had a nice chat and she quickly reassured me that she wasn't seeing any clots. She did, however, suggest that I mention cellulitis to the doctor and see if they thought it could be that. With the confirmation of no clot, the doctor looked at my leg again and decided that I did indeed have edema induced cellulitis, and put me on a 10 day run of Keflex antibiotics. It definitely cleared it up, and I was back to "normal" in a couple days. 

After that, I had a good run. Things seemed to be going well - tumors shrinking, infection going away - and I was looking forward to spending two days with my parents in the Berkshires. Just a few days before leaving, my body decided to start in with the joint pain side effect of this drug. Excruciating, arthritis-like pain in every single joint. Getting out of bed has been hardest. Once I move around a bit they ease some, but stairs are rough, and I don't have enough energy to constantly be up and moving, so there are always times when I'm back to being stiff and in pain. We did make it to the Berkshires, and we had fun, even if I had to be in a wheelchair or use a walker and a cane the whole time. I think my favorite part was the puppet show of "the three little pigs" that was so amazing that it entertained both the kids AND the adults completely for a full half hour! They seriously need to advertise more to adults as it was just as fun for us as it was for all the 2-8 year olds that were there to watch. 

For a few days I was off of any pills and meds (with the exception of my nightly cannabis oil. Did I ever tell you what it tastes like? Dirty socks - yup, not so appetizing. But not so bad if you just swallow it and keep it off your tongue). It was a nice feeling. And, it turns out, I'll be this way for a while. I love that I don't have a thousand pills to take to manage the side effects from this drug. Makes it "easier" to handle for me mentally. 

On the way home from the Berkshires, I broke out with a rash on my knees. The nurse practitioner (Jessica - super nice!) looked and agreed with me that she didn't think it was another case of cellulitis, but rather heat rash or some other rash from being exposed to something my skin didn't like. It started on just my knees, but did spread out and cover most of my legs and arms and cheeks over the next few days. They looked at it when I went in for chemo on Friday, and everyone talked and we all decided that it was most likely a reaction to sun exposure (or sunscreen/sun exposure), which I'm supposed to avoid while on this drug. I thought I had done a good job covering up with sunscreen and pants, but it wasn't enough. At least it didn't keep me from getting my chemo, though. I was a bit worried about that when I went into clinic on Friday.

This weekend has proven to be quite the smack down for us here in the Fitzgerald house. Friday, my chemo went well, and I was out of there in under 2 hours. The steroid made me a little nuts, as usual, but I was able to get a little rest and had a great chat with my Aunt Susan. Later that night, Mike had his own emergency. He was stung by some ground wasps while mowing the side lawn, and ended up having a major allergic reaction. He was taken by ambulance to the ER that night, and was sent home on prednizone, benadryl and with an epipen prescription. I went to my neighbor's house and we got to chat and catch up. It was like a little girls night in for us, while she was "babysitting" me and making sure I didn't have any reactions. We picked up mike at about 11:30, and we headed to bed. The next morning Mike got into doing some other things and forgot to take his meds. A panic of feeling the same symptoms start up again (even though no hives were breaking out this time) while we were at CVS picking up his prescriptions sent him back (by ambulance) to the ER. This time they just watched him as he had by then taken his steroid and benadryl, but they were glad he went in. He is now required to carry an epipen with him always as the reactions will be worse and worse each time he gets stung. 

With all this going on, Saturday was Lochlan's 3rd birthday! I can't believe he's three. It seems like the time is just flying by, and that I'm missing out on some of the good stuff. He is turning into a little boy, no longer a baby or a toddler, and its making me miss Saoirse even more. We didn't get to see her grow up to be a little girl, and I think in my head I'm just not ready for him to surpass her in that way. Mike and I made a cake (a train cake to be specific) for Lochlan's birthday. He loved it, and after dinner with family, running out of a wind storm in the yard and all sorts of excitement, cake and presents, I was completely exhausted and had to go to bed. Of course, I spiked a fever and had to call in, but with all that happened over the weekend (and the fact that I was having no other symptoms of infection), my doctor was fine with me taking some tylenol and sleeping it off. I was fine the next morning (except for being tired and having joint pain still), and tried to get more rest. 

It's hard to rest when all you want to do is be normal. I think this has been the hardest part for me. I want to be more useful and helpful, but I just can't. I think maybe that's why some people think we are doing so well over here. I'm looking better, and mentally am feeling better, but the reality is that physically my body just can't cope. I still have to rest a lot, and still have pain that is interrupting my being "normal" and "functional." It's hard to allow people to do everything for you all the time, and it gets harder to keep asking for help. I feel like I should be progressing faster, and even though I've been told that I'm making good progress and that things will take time, I just wish that I could be more like myself and less like a cancer patient. But I guess that - for now at least - I'm going to have to get used to being a cancer patient again. You would think that I would be used to it by now, but its a hard thing to let yourself be. 

Again, thank you to all of you who have reached out to us with help and support. It means so much to us. If you have some time to come hang out with me, or come play with Lochlan, we always need the help. Thank you!

Sunday, July 10, 2016

Bitter Pills

Things were very tough when I got home from the hospital I was carrying over 15 pounds of water weight (*we now know it was more than 30 pounds!), and it was extremely difficult to move or sit or lay down. I was so uncomfortable - and therefor super cranky and emotional. I couldn't do anything for myself. I needed help to just get up out of a chair, to lift my leg onto the footrest, even just to wipe a stepped-on-rock off my feet! Relying on others to do everything for me was extremely difficult for this "strong willed" independent 31 year old. 

A panic attack over my water retention and ascites sent me to the ER on Sunday (after coming home on Friday) in a panic that I should have been given an albumin infusion while in the hospital. PTSD was rampant in my brain of Saoirse never coming home after her last admission. You see, I was living exactly her last hospital stay - third spacing fluid, so uncomfortable and full it kept her from functioning; squished liver; trouble breathing with fluid in the lungs - She was sent to the ICU and she never came out. I didn't want that to happen to me, and in my head, that's where I was headed. The reality for me, however, was much much different. The ER drew labs and the doctor put a call in to my oncologist to discuss things. Turns out my labs were so much better than just the two days before, that nothing was needed to be done, and I was reassured that my body was actually moving in the right direction to healing itself. This reassurance allowed me to relax a bit and helped me be more "comfortable" being home. 

Over the next few days the fluid slowly started to recede just enough that I could eat a little bit more food at the time. On Thursday, June 30 I went in for my first dose of Brentuximab. It was a strange to be back in the same place again. My usual nurse was ready and waiting for me. It was a busy day at the Addison infusion center, and almost every chair was filled. The drug itself is only a half hour infusion, but on the first day there is always a lot to do to prep for a new medicine - and this was a new medicine for the clinic as well. I was there for about 3 hours total. Not so bad, considering my first ABVD treatment I was there for 8 hours! The only pre-med for this infusion is Dexamethazone - a steroid to help curb infusion reactions. The nurse warned me that the pills were very bitter, and they definitely were. I appreciated the warning (and the crackers to get rid of the taste!). Once she got my IV in and connected, she hooked up the Brent. It goes in pretty easily - not at all painful like some of the drugs from before (yay for not needing to get a port put in). She watched me afterwards and gave me some fluids just to make sure I didn't have an immediate reaction that would need attention. I sat with my coloring, and felt pretty normal and comfortable. Then it was time to go home. 

After getting home, and getting settled, I was feeling pretty great. I decided to watch the movie version of Rent, and was belting out show tunes for two hours (thanks to the help of Mr. Steroid that I had taken). The highest risk of reactions from Brent is the 24 hours after infusion, so Mike was obsessively taking my temperature in order to make sure I didn't spike a fever. This led to a hilarious incidence of my temperature actually DROPPING and causing me to have to make a call into the on-call doctor at the clinic. I dropped below 95 degrees (according to one thermometer), but I felt fine otherwise. The on-call doctor said it wasn't a concern, so I was able to go to sleep and not have to keep checking. Of course it was normal the next day (and every day after that) no problem, but it was a rather funny reason for having to be on "fever watch." 

Each day after chemo my swelling seemed to be going down. By fourth of July I was feeling comfortable enough that I could sit up and go to a family cook out. I still needed help to get around and in and out of the car and things like that, but I was feeling like it wasn't as painful as it had been. It was nice to get out of the house and see other people! I lasted about 3 hours and two plates of food in the heat, and then we headed home. It was a relaxing day. The next three nights I was up every couple of hours peeing out tons of fluid. Each day there was a significant difference in the swelling and my comfort. I was able to sit up for more of the day each day, and was able to finally have my legs back to normal by Wednesday when I had to go to my doctor's appointment. And, oh yah, the tumor on my back was visibly shrinking! It actually hurts when it shrinks, but the pain is totally worth it in the end. She was very happy with my progress, but was concerned about my high heart rate. An EKG showed nothing to worry about immediately, but she was glad that VNA was coming out the next day to check on things again. (More on this in another post.) Down to 106 pounds though, but with the fluid gone, my appetite was coming back full force and I have been eating non-stop ever since.

So far this drug has been a blessing. It has caused some additional things to worry about and think about, but it is acting as it should in my body, and has helped immensely already. Keep your fingers crossed that it will continue to work just as well in future doses, and that I can be done with this all by the end of the summer! Here's hoping!

As always, thank you again for all of your support, and if you want to help, or know someone who wants to help out, please take a look at our Needs page and contact me if you have any questions or just want to chat. It's quite boring here after all. 

Saturday, July 2, 2016

It's raining, It's Pouring…..

A Terrible Tragedy:
On May 23rd we got word that Mike's mom had gone into a coma. We got ready to send him to Chicago the next morning so that he could be there. She had done well overnight and it was decided that Mike would not leave in such a hurry, and that he would go later to see her. He wanted to get Lochlan and I set up with some concrete help before he left. She came out of the coma, and was doing cardiac rehab near her home in Illinois. Well, life gets crazy, and before we knew it it was June 10th and we got the call that she was again not well. I booked Mike for the next morning, and he was on his way. Sadly, on the morning of June 11th, Mike's mother passed away. She had been battling congestive heart failure for over ten years, and her heart just couldn't keep up any longer. 

Having battled cancer herself 3 or 4 times during her life, she was not a stranger to cancer. She nursed many family members with different cancers (mostly breast cancers) back to health or comfortably to death. She was a tried and true caretaker who spent her life caring for others when they needed it the most. But she had lived it. She had survived it. And she had never let it slow her down. She was a true warrior who came back from the brink more times than anyone should ever have to do. I admire her for that. 

You see, Mike has spent his whole life as a cancer caretaker. His mother's first diagnosis came at his ripe-old-age of 6. Being the oldest, he remembers caring for her over the years. He remembers the treatments and the ups and downs. He remembers it coming back 30 years later after a 1% chance of return. He speaks of her resilience and her confidence and her unwillingness to back down against the fight. She epitomizes the war on cancer - a never ending siege that comes and goes, but is not given into or compromised with. She was a truly amazing woman - one a wish that I had gotten the chance to spend more time with. 


A Terrible Emergency:
Mike's trip to Illinois ran right into a business trip to Atlanta so he went straight there. He was home a week after he left. 

Not 24 hours after Mike got home, I spiked a high fever. I was taken to the ER and admitted to the hospital for a week. My diagnosis - Pneumonia - but I was also in need of blood and severely malnourished. I received two units of blood, three different IV antibiotics, and a host of tests - including a bronchoscopy and full CT scan, and lots of food. 

The month of May and half of June became the "Experiment" (as one of my practitioners calls it). No different than when conventional treatments are tried and fail, the combination that I tried did not work for my body. The combination of the Ketogenic diet (which I had been feeling pretty confident about) and the high dose cannabis oil (which pretty much had me sedated for most of the days) didn't have the predicted effect. Instead, the heavy sedation and full feeling I got from the high fat diet left me unable to eat enough food to keep my body healthy. The reality is that I just waited too long to try and put multiple high intensity therapies together. I let my complacency toward my cancer get the better of me, and I let my "strong willed" attitude blind me to the changes just a bit too long. 

It took a good fever to kick me in the ass and wake me up to the fact that my current - stressful, bereaved cancer parent, entrepreneurial, mother-to-a-toddler, PTSD, financially unstable (read BROKE) - life was not conducive to my "I'm fine" attitude toward my disease. The constant stress finally caught up, and my body finally gave me a warning. 

I had my first ever true panic attack in the hospital. This is the first time I have been hospitalized for my cancer (only other times were for kidney stones and having babies), and it was a reality that I was not ready to face. I kept having them, pretty much every day, the whole time I was there. You see, Saoirse died following a series of extremely similar symptoms (with very different causes). And while I was reassured over and over again that this was a very different situation (hers was tumor related and mine was mostly infection/nourishment related), the image in my head was still the same - I was going to swell, have trouble breathing, move up to the ICU, and never come home. And while I know that Mike and my parents and family were experiencing the same trauma watching from the outside, living it from the inside has been a terrible nightmare. My one and only goal was to get OUT of the hospital. 

After nearly a week in the hospital, and all bacteria cultures coming back negative, I came home that Friday afternoon with a plan. (I did go back to the ER Sunday morning after a mini panic attack about still being swollen, but all that they did was labs that reassured me that I was getting better, and sent me home.) It was time to finally say enough is enough to this cancer and take back control. I was ready to take control on my terms, in my own way. I was ready to ADD convention therapy into the picture. I made a plan with my oncologist to start Brentuximab Vedotin one week from going home. 

As all of you know this was my "back-up" drug. Now, Murphy's law says that if you have a back-up, you won't need it, but life doesn't always follow that rule. Very quickly I was able to put in place my plan of action for this additional treatment (kudos to the amazing teams that work with my oncologist and deal with my very demanding self). 

I AM NOT GIVING UP MY ALTERNATIVES!!! I will still be going to Tong Ren, using cannabis oil (at a much lower dose - and with full knowledge/encouragement of my oncology and nursing team - its great side effect management anyway), and, while I won't be doing full on Keto for the moment, a whole foods - no sugar- lower carb diet. 

With my current status of swollen and at high risk, I need constant eyes on me and care. I cannot dress myself, wash myself, get my own food, or get up down and around myself. I cannot be alone with Lochlan, and I cannot care for him - which means he needs care too. Mike has taken on a full time caretaker roll as well as full time business roll, which means he really hasn't been working much. This has led to extreme financial stress for us personally. We are very careful to keep CareAline going so that we can continue to help all the patients we can with our products, so we allow our personal finances to slip rather than the business'. 

A Terrible Situation:
Currently we are in a survival mode situation. We are close to drowning financially. Not only are we behind on our mortgage and utilities, but putting the right kind of food on the table is getting increasingly difficult. We are facing the fact that we have no idea where or how we are going to catch up. It's seeming more and more hopeless that we can figure out a way to get financial assistance from programs or the state in time to make a difference.  I am working on assistance applications, however those take time (and sadly many take me having to physically be able to go to an office and apply) and it will be a while before it all kicks in. Being a self employed family makes paperwork extremely complicated, and often times makes it so that we can't figure out how to make the applications work. Any support - financial or otherwise - is more than appreciated, and I know that some day we will be able to give back as much or more than the amazing support we have and will receive. 

We also have immediate needs at home. Until I can get situated with a state paid for caretaker, we have to have two EXTRA people here at all times. One for me and one for Lochlan. I need constant care, and so does he, and Mike NEEDS to be able to work at least some hours so that CareAline stays afloat. For those who can't be a caretaker, we also could use some meals that we can put in the freezer or the random errand or household item done. For those that have already reached out and helped, I am truly grateful and please know it is not overlooked and not taken for granted. I am linking to a page on here that has our specific needs that you can look over for insight. 

(Needs) - (Meal Train Link to sign up for meal delivery)

Thank You!
I just want to say thank you for everything. I know that many have been at odds with my decisions, but that is not what I am focusing on. I am focusing on the now - the reality that is today, and going through things one day at a time. I will post an update on how the drug is going and that type of things in a day or two. But for now, THANK YOU, and happy fourth!