We also decided to have my right lung drained again. This, after I realized by doing my super sleuth investigating that the report that was used as a comparison recently to determine if the fluid was at a level requiring draining, was actually the report from a week PRIOR to the last time it was drained, so YES, I was way over due for a Thoracentesis procedure. This time around, I gave them SIX POUNDS of fluid...1300 mg of fluid... it's amazing to see the scales drop the following day of such a procedure... NOT the way I recommend losing weight fast! Very painful in the long run. I have been in bed for the most part since the procedure which now was performed nine days ago. Mainly due to exhaustion from the new chemotherapy I am on and bone pain from new mets discovered in my right shoulder that become exasperated by my continued coughing.
Between the fluid drained from my lung and the blood I had drawn for my doctor appointment where we determined to do the drain and change chemos, the doctors and engineers will be testing the fluids for DNA mutations to further help them to select my treatment options down the road should this new course (Doxil) not be the right mix for me. I am excited at this opportunity, as it will be helping them to create a treatment SPECIFIC to MY NEEDS for the cancer growing in MY BODY. Of course, I cannot find the paperwork that explains this testing further or gives it a name, but when I do, I will include it here should anyone else wish to look into this on your end.
I had insisted on meeting with a Pulmonary specialist and a Gastroenterology specialist to be able to ascertain just WHY the cough would not go away from my previous Thoracentesis at the end of April, when we returned home from vacation. I also requested a consult with Hematology to verify that the blood thinner I was switched to when I could not tolerate the injections of Lovenox any longer, is the right dosage and medication for me. Having had all this prescribed by my oncologist, whom specializes in Breast Cancer and it's affect on the bone, I wanted to hear from the specialists that handle these particular issues. My doctor was happy to oblige me. Here is the results of those appointments:
First, I met Dr. Naylor whom specializes in Gastro issues. Between viewing my most recent scans we had recently performed and discussing my issues with him, he decided to order a test called Esophagram to confirm that the worst of the cough was GERD, the reason behind my inability to keep food down, as I was coughing so hard after a meal I'd literally cough up my food (or beverage) causing me to lose an average of #2 per week during the months of June and July. It was truly an awful time. In addition to that, was the fact that I keep throwing up / coughing up whatever I would eat. He also prescribed Linzess for me, as it helps to break through the Opioid Constipation that many of us with Cancer or Chronic illness end up with. I've been taking my daily Miralax and stool softeners up to 4 a day, but with not being able to get enough fluids, those were not helping me. I can still use them, but this Linzess will work harder for me. I just need to work on those fluids...and I can EAT my fluids in the form of fresh fruits, and it's working!! YAY! I can poop again! It was determined I need to avoid dairy products, greasy food, spicy food, anything acidic, ...basically - anything we prefer to eat, I had to avoid it. I could enjoy a leafy green salad, just without any type of dressing as they're all either vinegar based, or Mayo or Buttermilk based. ARGH!
SO--This test. Esophagram, consisted of me having to sip barium while they took xrays of my esophagus during this process, then swallow a capsule which also was xrayed, then chug the rest of the barium on film. Next, the fun part... small cup like a jello shot would be in filled w/ little crystals that are similar to Pop Rocks. Put in your mouth and swallow with same amount of water, oh... and try not to belch. HAHAHA YEAH RIGHT! They were flipping serious! THEN, I was instructed to roll on the table three times. (in a baggy ass gown mind you with bad hips). That was to mix up the crap now inside of me. I felt like a 5th grade science experiment about to BLOW! Then they took more photos and I was done. SMH Anyway, got that done and over with like a champ. Radiologist was present during the test and confided in me that yes, I have GERD and the good part, there is no sign of a blockage in swallowing (that was the purpose of THIS test, to rule out something like a hiatal hernia) God, I hope to never have to do that again!
In the beginning of this nightmare, I met with Danielle Karsies. She is one of the Cancer Center Nutritionist Dietitians. She gave me some great tips on what to eat and what to avoid for GERD. Keeping in mind, I could not afford to keep losing weight, as being on Chemo makes one sick already and without the added weight, we can wither away easily so we need some of our fat cells to help us get by on the days we have no appetite. At this point, I was approaching 150# and stand 5'5.5". At the time of my visit with her, I was blessed to be able to do so without being charged thanks to a generous GRANT providing their services to those of us in Palliative Care, as typically; Medicare does NOT cover nutritionist / dietician services. I am hoping for all of us in Palliative Care / Symptom Management at UofM that this grant was able to be extended. With her advice, we were ready to finally go grocery shopping to stock the fridge and pantry with to healthy choices I should be able to eat without having to suffer as I had been doing - from out of nowhere, for the past couple of months.
In addition to buying the Lactose Free milk, Almond Milk and fresh fruits and leafy greens, I began trying different things such as Keifer. Keifer is a liquid form of yogurt that is a probiotic and lactose free. I found mine at Aldi's, they have Raspberry or Pomegranate flavored Kefir, and it was half the price of that at Meijer! I could mix a little w/ the Lactose free fat free milk in my cereal and give it a bit of a boost in flavor, and add the probiotic bonus... it was not bad. On it's own, it's a bit too tart, so I also made lots of smoothies, which I've never been able to keep the volume to only one Bullet cup, so the Black & Decker blender and I became besties again. Here is the recipe I used for my newest non dairy, probiotic fruity treat!
A good mix of one each (Pitted or seeds removed): Pear, Plum, Peach or Nectarine, handful of Blueberries, 3-4 hulled Strawberries, fresh cherries, a scoop or two of Coconut Milk Vanilla Bean Frozen Dairy product (Dairy free ice cream) about a cup of plain Dannon Yogurt, and a shot of Knusden Pomegranate & Cranberry Juice to 1/2 Cup of Pomegranate Kefir and a handful of ice cubes. Added to that, a Tbsp of Turmeric Powder (ok'd by my hematologist as I am now on Xarelto instead of Lovenox injections for blood thinner). I also added 1/2 package of French Vanilla instant pudding mix to help thicken this mixture. OMG deliciousness!! I made a smoothie then filled all of my Tupperware ICE TUPS for a frozen treat later. I had so much left I even froze a small container like ice cream to re-blend at a later date! Even Hubby decided he liked these more than his Popsicle brand he'd been buying for himself. He's been told he needs to lose at LEAST 20#. Looks like I'll need to make more of these yummy treats for us both...
Tonight, I Plan to make a Mango, Papaya smoothie using what is left of the Raspberry flavor Kefir. I have some Welch's Pineapple Apple Orange Welch's Essentials juice I'll add to that one. I'll mix that with some Plain Dannon Yogurt as well, gonna have to see what flavor puddings I have, or maybe I'll add Jello instead... wonder what flavor would be best with this one?
So, back to reality; I've been here in bed, or on the recliner - basically stuck indoors not having the UMPH to go anywhere. I get headaches from the sun due to the mets on my skull, hats hurt it and I'm now covered in a rash from what we believe to be the Chemo. I sent photos to my Oncologist and they seemed to concur this is the typical rash that comes with this new (to me) Chemo, which by the way is called DOXIL for short. You can learn more about this chemo by clicking on the name, it will take you to their website. I am so thankful for my husband Mike. Though it gets irritating sometimes having him so close and 'in my business" (I've always been a very independent woman) I really do appreciate his devotion to me and learning to cook to suit my needs (he's a grill master but that does not help my case any). There is no way on earth I could be doing any of this on my own.
I miss my grandchildren the most. They've had an extra busy summer apparently and have not had time to come visit or help out their grandma or give their grandpa a break from his caregiver duties. School is about to start again for the fall, and it's been since JUNE that we've seen them. Breaks my heart not seeing them! Not like they have much to do here right now, but they're old enough to be able to just hang out and help me arrange photos for their scrapbooks, and get things for me if I need them, or call 911 or their Papa Mike if something should happen God Forbid.
Mike and I did manage to get our front patio set up to sit and enjoy. He often takes Marcy Kat out on her harness in the morning while i'ts cooler out so they can both relax and enjoy. He's had coffee w/our neighbor Mike many mornings as I lay in bed too tired to join them. Some mornings I can manage to join them for a bit, but not too long. HE has been under treatment for Pancreatic Cancer and just received word from his recent scans that he does NOT need to go for Chemo at this time! So Happy for him!! God Is Great!
Our Marcy Kat has been becoming more attentive toward me as I've been in bed also. She would come running in when I'd have a coughing spell, Mew Meow MEOW??? as to as if I was ok, sit on the edge of the bed and once I was ok, she'd walk up to me and let me pet her a moment, give a head butt and go back to her "security station" at the living room window where she stands guard at night making sure no other animals come through her yard. Silly girl.
For now, my goal is to get feeling stronger and get back to doing things outside of this house. We have a very special date coming up Oct 14 2017 with the Yankee Air Museum and the Rosie the Riveters, we'll be gathering at EMU's Rynearson Stadium to take BACK our Guinness World Record, we're shooting for 5,000 in attendance this time. Due to the ongoing construction at Willow Run, between the Bomber Plant renovation for the Yankee Air Museum and the Autonomous Vehicle Testing Grounds being constructed on the property, there is no room at the Hangar's for our Guinness Event this fall, so Eastern Michigan University, in conjunction with Ypsilanti Township has worked it out for us to utilize their indoor facility at their Convocation Center instead YOU can learn more on this event and how you too can participate at http://yankeeairmuseum.org/rosie-world-record/ The fun part this year, we will also be including BOYS and MEN as long as they're properly dressed! As you may recall, I've been involved in this Rosie Record thing since it began in 2013. THIS WEEKEND celebrates Womens Empowerment week, which we have Rosie to thank for a good part of that right !! We CELEBRATE Rosies' of every race, religion, nationality and gender... and look forward to having YOU join us on Oct 14 in Ypsilanti MI. Plan a week long vacation, our colors are just starting to change about that time and there are plenty of things to do in Ypsilanti / Belleville MI!
ON that note, I'll close this blog - time to find hubby and figure out dinner. I got brave this morning and had him make me Bacon(which I've not been able to eat in months) "dippy eggs", and dry wheat toast. Oh man was it good! I'll be thrilled when I can once again enjoy ordering me a Bomber Breakfast at our favorite Ypsilanti diner, @The Bomber Restaurant Where the food is always as awesome as the service, and the walls are filled with memorabilia of our Rosies and the boys they were working so hard to bring home to their precious Willow Run! And the NEVER ENDING cup of coffee... oh my how I miss that coffee!!!! With this GERD I've had to avoid going to the Bomber, I'd be in some serious pain if I tried to eat there right now (or most place for that matter that I really enjoy)... the servings are definitely generous and so good you don't WANT to share them!
Until my next post, God Bless you all! Also, remember to check out my store here on the webpage ... we've made it possible for EVERY PURCHASE you make to provide 30% of your purchase toward @METAVIVOR.org to help them help US by turning that money into research grants for METASTATIC DISEASE. You can shop for Christmas Gifts now and part of that sale will benefit the MBC Research being done to find us a CURE..
******************IT'S A WIN/WIN!*****************
Also, if you would like to help Mike and Teri stay afloat with fuel and vehicle expenses to prevent them from any complications getting to and from the many doctor appointments, you can always make donations directly to US at our personal paypal site: *we do suggest you mark your donation as SENDING MONEY to a Friend to avoid any surcharges from being deducted from your donation, those will go directly to PayPal and neither of US (you or TLC) will benefit from that. The site is: https://www.paypal.me/TLCwageWARonMBC