First of all I better get this jealousy issue out of the way. I'm generally not a jealous person. I'm genuinely happy when good things happen to people, if they get a new home, if they have a great job, or go on a fun trip - whatever it may be. There is no reason to waste time being jealous...I have my own blessings and things about my life I can be happy about. I looked up the definition of jealousy and it said "the state or feeling of being jealous." Well that was super helpful :) Jealous means: feeling or showing envy of someone or their achievements and advantages. It has often been referred to as "the green-eyed monster." Well, this green-eyed monster has risen it's ugly head...that is the only explanation of what has been going on with my lungs. So, I have explained that over time my pleural effusion on the right side has increased in volume and the frequency of needing to be drained. I finally had a PleurX drain put in so I can drain it at home when I need to - which is twice a week. I'm still draining about a 1000cc's, or a liter weekly. The left side has been stable since all this nonsense started - I think it was drained once or twice in the 10 months I've been dealing with pleural effusions. Well - I think the left side has become jealous of all the attention the right side has received. That's really the only thing I can think of. Recently the fluid has been increasing by a lot and now I'm getting it drained every 2 weeks. Dr. Litton has let me know that we are probably going to have to put a permanent drain in the left side as well. This is disappointing because it means the chemo isn't working in this part of my body.
A week and a half ago they drained 750cc of more pomegranate juice. The problem with the left side is that I'm not tolerating much fluid accumulation and then I have excruciating pain after the fluid is drained. A few weeks ago when I had it drained for the first time in several months I ended up in the Emergency Room several hours after the procedure because I was in so much pain I couldn't breathe. At first they thought it was a collapsed lung, luckily it wasn't. Next they thought I had thrown a clot to my lung, but scans showed no clot, which was wonderful. My platelets were low so they thought possibly I was bleeding into the pleural space - but it wasn't that either. They were giving me IV dilaudid without only a little relief. We still don't know why I have so much pain post procedure. Dr. Litton thinks it might just be my lung has a hard time re-expanding after the fluid is drained. So the same thing happened again a week and a half ago...about 6pm the pain started again but it was worse this time I couldn't take a deep breath, cough, sneeze, yawn without almost literally passing out from pain. All these lung problems make me realize how much normal breathing is nothing to take for granted. It also has made the green-eyed monster more prevalent - I find myself watching people run, hike, swim, just do normal every day things so effortlessly. I long for those days - I love to hike, or even just go on walks...but walking is becoming ever so difficult if I want to breathe at the same time. That dang wheelchair just keeps calling my name sooner than I would like. I feel like it is so trivial to be jealous of people who can be active...I need to get over this feeling. I sometimes wonder if maybe instead of jealousy it is just feelings of sadness and loss as I become unable to do things I used to like to do. I have been very thankful for Smith's getting their clicklist program up and running. It's so nice to order all my groceries online and just pull up and they load them in my car. That saves me so much energy - I love it! Now, if they would just come home with me and put it away, I'd be in heaven. I will admit, I'm still a really good driver - I don't get out of breath unless I'm in traffic and have to yell at stupid drivers. Haha :) I am also very thankful for oxygen - the feeling of not getting enough of it is terrifying. Unless you have been oxygen deprived you have no idea what that feels like - I never did until now and I can't live without it. As far as treatment goes, nothing else has changed lately except my chemo doses have to keep being lowered. My bone marrow has a hard time recovering after chemo, especially my platelets. I've also had to get blood transfusion about every 3 weeks. I've also had to delay several doses because my counts are low.
This morning I woke up - I was a little out of breath but after showering I knew something wasn't quite right. I was more out of breath and dizzy during my shower...after I drained my right lung. This is the usual color of my drainage:
.....And this is what it was this morning:
Needless to say I had to call the MD on call - even though I knew what he was going to say. I talked to Dr. Frame who I don't know, but he was super nice. I was hoping Dr. Litton was going to be on call. :( So we headed to the ED since it was Saturday. I was sure my platelets were going to be 5. Luckily they were 35, but my hematocrit was low so I bought myself a blood transfusion and was admitted to the floor. So right now I'm just waiting for orders to be written and blood to be given. My chemo sure has been hard on my bone marrow...I see Dr. Litton next week - I wonder if he will change things up. I was blessed to have my mom come with me to keep me company and some friends stopped by. I was supposed to attend a wedding that morning of my good friends Trent and Bridget. They were kind and thoughtful enough to stop by to see me after their wedding...so amazing and it was so good to see them and how happy they were. I was also lucky enough to see my good friends LeEtta and Dawn, they were on the way home from the wedding. I love my friends and am so blessed to have so many wonderful people in my life!
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| The happy couple Trent and Bridget...little love birds. :) |
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| Dawn and LeEtta...love them! |
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| So very NOT thrilled to be spending my Saturday in the hospital. |
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| So very thankful for people who are selfless enough to donate their blood. I couldn't get by without it. |
I introduced her to Ruth's Diner...I can't believe I have never taken her there before. We could have just eaten the biscuits and been happy but of course everything is good there! My mouth is watering just looking at them now. Yum!!
We also had a french toast eating contest on Saturday morning at Kneaders. As you can tell we tend to love our carbs...especially bready type of carbs. I haven't loved bread as much as I used to due to chemo for some reason so I didn't come close to winning this challenge.
Luckily with this chemo I can still taste things...some things don't taste good anymore and things can taste different but I have found a few treasures that you may want to try...I'm a giver/sharer...what can I say. I have been loving soup lately so I tried this lasagna soup from Cutler's and now I'm obsessed with it! I can't figure out what day they serve it so I find myself going through the drive through a lot. Stop tempting me Cutler's...I need more lasagna soup!!
Who doesn't love chocolate covered chocolate doughnuts from Dunford?? Well - they are delicious to me. So...of course when I saw Arctic Circle had a Dunford doughnut shake, we absolutely had to try it. It was DELICIOUS!!
My cute sister sent me these amazing chocolate covered strawberries for Valentine's Day. Now I know she really loves me. These berries were as good as they say they are on the commercials.
Now if you haven't tried a frozen hot chocolate from Dairy Queen...you are missing out. They are very rich so I don't have them very often but when we do get them....mmmmmmmm they are yummy!
I have some new men in my life. I love them so much - don't think I could have gotten through the holidays with out them. They make me so happy. Meet the most important men to me right now:
Oh Trader Joe's...you always have the best treats. Too bad they are only available at Christmastime. I crave these almost every day. I'm sure it's because the ginger helps me not be nauseated...yeah, that's it.
I was able to go to AZ for a few days for a cancer conference at Mayo Clinic. I was hoping there was some new magical breakthrough that I could implement in my treatment...alas, there was nothing magical that I could be excited about. I was so excited to get to the sunshine of AZ but it rained the whole time. I was a little disappointed in this trip except for seeing my family and having my favorite tacos at Aho Al's. If you know of anyone that has good tacos please let me know because I want these tacos every single day. See my tacos on that little plate...they are unbelievably delicious.
On another note...I haven't sewed a single stitch in about a year. I was starting to get a little worried because I love to sew and quilt. I haven't had the desire to get my machine out - it just seemed too overwhelming and too difficult to find all my stuff and get everything set up. Plus it's all in the basement and I haven't been doing well lately with stairs and breathing. So...funny enough, this is how I get up and down the stairs:
Haha...this has been installed in my grandparent's house for years. It may remind you of a scene from the movie "Gremlins." I don't know why I didn't think of it sooner. I know you are all a little jealous of my stairs chair. If you want a ride - feel free to stop by. You will be super entertained. My goodness...who knew it would ever be so difficult to go up and down the stairs. Some days I feel like such a loser.
So, now that there was not any excuses for going downstairs I started finding my fabric and getting things set up again. So far I have finished 2 baby blankets that have been sitting around forever waiting to be finished.
#2 finished
...And the back of #2
It felt good to get going on something I love to do again. I have lots of quilts to do - I need to not be sitting here in the hospital wasting my sewing time....grrr.
Well, this post has taken me about 5 days to write - I'm pretty slow at everything these days. I had surgery today(Tuesday 2/28) to place a drain in my left lung. My platelets were only 33 so I got 2 units prior to the procedure. This was actually the first time in the 4 years I've been treated that I have needed a platelet transfusion. I guess I'm still experiencing firsts with all of this. I was glad my sister was there with me - things are better when she is there. I was there at 0700 and the procedure was supposed to be at 0900 but with all the delays waiting and getting the platelets I finally went for the drain placement around 1240 and we were on our way home by 3pm. It was a long day. I have to give props to the Interventional Radiology department at St. Marks. They have taken such good care of me and have been so professional and so good at what they do. I'm all drugged up right now so my pain is under control but I'm not looking forward to when it wears off - it is so painful having a big tube tunneled under your skin and inserted in between your ribs into the pleural space where it constantly rubs against your lung. We do have some good treats and lots of movies to watch while things heal...I'm hoping that this will be my last surgery/procedure.
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| Pre-surgery selfie |
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| So bored sitting, waiting, watching... |
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| Finally hanging platelets after waiting 3 hours for them! Also this is my favorite nurse Serena. |
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| They were so slow going in we had to put the pole up as high as it would go to try to get it to go faster. |
So I guess this brings us up to date for now. We are all still trying to remain as positive as possible and always hoping. Hoping for a better day tomorrow, hoping for pain to be under control, hoping there is a cure just around the corner....hoping. Without hope, what do you have?
Be brave, my heart. Have courage, my soul.
Tiffany
