Phase II- Day +6

November 27, 2018 Day +6

     If I can count and Day+1 was on November 27. . .boy, a lot has happened, but I am wearing some "Smart Cooke" socks from my friend, Leah and feel pretty powerful!!  It is only 4:30am, and I am waiting to be taken down to a CT for the spine, then a Spine MRI, then an optic opthomologist, a speech consultant. I had a late night visit by a neurologist on the team, who approved tests for everything!! ' They are trying to figure out is this is some crazy infection that has gotten out of hand or if this is transplant related. I just want it all to get better..

     I'll try and update later. My parents a flying in a bit later!!

     So, my parents arrived safely and early! They came like Christmas through the hospital doors as the nurses just gave us a moment!! I took a little while to unpack what was great for Inpatient and what was better for Outpatient.

     Medically, I feel calmer. Things have only progressed in the right direction. Two doctors from the  the Neurologist office came over with five junior firm members came over. It was just like in Legally Blonde when they are picking Summer Interns. These kids were the best of the best!  But more importantly to me , they all spoke MS. They knew how it worked, what I had been through, what this nightmare of symptoms brought to mind.

     Finally I asked, so even thought none of you could have been around for the study 10 years ago, do you recall how the patients that had fevers during Neutropenic periods fared, compared to those who did not? Of course the youngest hand shot up! Yes, I knew that was my Evan who stayed up all night and read the reports and check the clinical trials file.   "Yes 'Maam," he said,  "They hit their lowest MS points ever. . .but they recovered!!" note: This is where, if I knew how, it'd be fun . to include the cutest movie clip with Reece Witherspoon and Luke Wilson.

      So, I thankfully, prayerfully, and humbly feel that is where I  am at: I will recover from this too. There could be a little viral mix going on to so I'm having another MRI tonight. . . but feeling back on the path.

Problem Day 3

November 24, 2018 .

The hospital gave me a self-regulated morphine drip and I think I deleted my entire blog. I wanted to be a liitle ahead of the game and try blogspot (Cariing Bridge kind of made me nervous).. Yikes!  stay tuned.  I am alive though, on DAY 3, with a horrible case of mucositus.

Phase III Day -1

This'll be quick because I am tired. Day -2  was the worst so far, with non-stop vomiting and fevers. Luckily, I woke up just nauseas. With the Mephalan that they gave me yesterday, started something called mucositus. It is a painful condition starting in the mouth. So far, it feels like my mouth and throat are filling up with mucous and it feels like heartburn trying to swallow. Ughh!

Tomorrow is the big day so I am looking forward to that: Transplant. Apparently it only takes about 30 minutes, but it is meaningful in that they refer to it as your Stem Cell Birthday.

Thank you for all your thoughts and prayers and good wishes!

Phase III Day -3

     So, I actually got some sleep and woke up feeling much more positive! Odd thing was, the numbers did not match how I felt. My blood pressure was something like 68/49, which I really thought meant I died. And my red blood cell count had gone too low. And, I had shortness of breath.  So, in between morning chemo, they gave me something to elevate my blood pressure, a chest x-ray and a bag of RBCs.

     I was actually, inappropriately excited to get my chest x-ray because it meant leaving the 8th floor! It was not nearly as exciting as I had anticipated. They made me wear a mask that was so tight my glasses fogged up and they took me up and down a back freight elevator. I thought I was going to see out windows and lobby shops and a lot more excitement. . . I even brought my phone in the hopes of posting a good picture or two!

     They are dripping in the chemo a little earlier tonight because I will also be getting r-ATG later. This is to really ensure that there are no more rogue T-cells that made it through chemo. The infusion of r-ATG can take 8 hours so they said it will be a busy (possibly uncomfortable) night!

     The other great thing today was the start of the new Netflix series, "Dogs".  This is not to be watched without a huge box of tissues, but so far Ep1 and Ep2 were amazing! One was about service dogs and the other was about trying to rescue a refugee's Husky out of Syria. 

Phase III Day -4

November 17, 2018

     So. . . this is going to be a lot harder than I thought.  I was admitted to the hospital feeling pretty good and excited, but as the chemo builds and it shuts my immune system down, I just feel crummy.  All of the doctors and nurses just kind of smile and nod, knowing that it is going to get way worse! I feel like a bit of a wimp already.

    I shouldn't have any complaints because this is an amazing opportunity. . . hopefully, I can get some rest and feel better tomorrow!

Phase III Day -6

November 15, 2018

     After a night of total insomnia from the steroids in the first days pre-meds, my day started pretty early with a round of chemo from 8-10am, another from 10am-12pm. They gave me lots of anti-nausea premeds and everything went well. I am having another cycle right now from 8pm-10 and 10-midnight. This will be the schedule for the next couple of days. (This is the E and the A in the BEAM+Atg protocol.)

    To be thankful for the small things,  every day I will be unplugged and disconnected from the IV pole 30 minutes.  It gives me just enough time to take a nice shower and have the bandages all cleaned up.

    They doctors recommend walking the halls as much as possible. Apparently, the more the patient keeps moving the quicker they recover and get out. This floor is so small though. It is the shape of a triangle, and they encourage a loop (10 laps = mile), but they are doing construction on a couple of points so you can't even loop.  It is so boring just going up and down a hallway, dragging an IV pole... which brings me to the PJ situation.

    I packed some cozy clothes, but kind of thought I could rely on hospital drawstring pants sometimes, even if only to avoid having to ask someone to do laundry. Well, the only pajamas they have at the hospital are size 2XL. . .seriously, for a floor of chemo patients who are rapidly losing weight?  I also packed wrong because I brought shirts to cover the tubes in my chest, not thinking it through that once I was Inpatient, the tubes will be sticking out, connected to the chemo pole.  So, time to shop!

    Christy came to the rescue again!! First she dropped in with a bag full of gourmet goodies for me to stash in my nightstand! Then, while she was here, we went on the Gap website  and found some  pajama bottoms and button down shirts, appropriate to roam the halls with tubes connected to the pole.  She was heading to the mall anyway, but went into the Gap and picked me up bags of stuff! I told her like three things and she texted, "Oh, I found a lot! I'll be by tomorrow to show you!" So, now she is a personal shopper, as well.

    While this last dose goes in tonight, they are going to give me some sleeping pills! Lets hope they work tonight!

Phase III At the University of Washington Medical Center

 November 14, 2018

     I checked into the UWMC early this morning. My friend, Christy, came with me and we had quite the laugh at Admissions. There was a sheet to list your belongings or check the boxes with what you are bringing (phone, wallet,etc) . . . Christy says, "Oh, no, did you forgot your hairdryer!"  Ha! Ha! Hair is long gone. The poor guy behind the desk didn't know what to do with us.

    I have a very nice room on the 8th floor with pretty views of South Lake Union where it channels into Lake Washington.  The nurse said that I may see the UW crew team row through there in the early mornings. When I go out my door, the nurses sit right there and their window is of Husky Stadium and Lake Washington.

    So, in Transplant terms, today is Day -7. The counting is all based on Day 0, which will be Transplant Day (aka Stem Cell Birthday). They started me with lots of fluids and premeds and I am just now getting the first regime of chemo dripped in. I will have chemo from Day -7 to Day-2. Rest on Day-1 and Transplant on Day 0.

    The doctor said that the chemo often has more of a build-up effect and a lot of people feel okay for the first couple of days, and then it hits hard. But, as I am typing, the nurse just put a couple of green bags next to me "just in case"! 

    Oh well, for me I'm just happy to get things started. The sooner I start, the sooner it'll be over and I can work on recovery and a new immune system! This whole process has been absolutely amazing. I have never been a science person, but am I ever thankful that there are people in this field.

Thank you again for all the thoughts and prayers!

Breaks over. . .back to Seattle in the Morning!

Monday, November 12, 2018

   After a very teary day, I am finally calming down, packed, and ready to go back to Seattle. Sophia surprised us and flew home Saturday morning, but she had to leave this morning and I just fell apart.  It really hit me that I had to go back up for the Big Phase III and it is going to be hard. I fly up by myself in the morning and have final appointments at the SCCA.  Then, my friend Christy will help get me all checked into UW Medical Center on Wednesday. I'll be there anywhere from three to five weeks. Yikes!

      But, I had a great time at home for a week, visiting with friends and family, drinking a lot of tea, putting some weight back on and sleeping in my own cozy bed! I thought I would have more energy and be out and about, but I was really tired. And, bald doesn't seem so cute anymore!

Resting up for Phase III . . .nice to be home!

November 5, 2018

    Well, we made it home safely! I was a little wired on Saturday, but have now officially crashed.  Just realizing all the tests, procedures, infusions, growth injections, effort building cells, harvesting cells, . . .my body is tired.  And, I am still on a boatload of meds and a lot of steroids so that always makes things weird with random energy, exhaustion and insomnia!

    I am so happy to have this week at home to restore a little before I gear up for Phase III. (The BIG PHASE) Paul is still home as full-time caregiver because I am on a lot of meds and there is a lot of maintenance and dressing changes at the Hickman line. He is very competent! Who knew, he had a medical side?

   So, if you're wondering what I'm up to this week, you can probably bet that I am lying on the couch in my backyard, just enjoying the leaves and the sunshine!

THANK YOU SO MUCH FOR BEING WITH ME ON THIS JOURNEY!!! I came home to a perfectly clean house, healthy teenager, happy, furry pets, food in my fridge and so many warm welcomes!!

Gratitude to finish Phase II

Friday November 2, 2018

     Woke up early after a real night of sleep! I am just so excited to have labs and training on how to change my bandage for the my time home! We will meet with the doctors this morning, but are hoping to have only one more set of labs tomorrow and then Uber it right to the airport!

     Upon reflection, this has been a tough Phase, a true rollercoaster of labs and results and side-effects, etc. Between my parents and Paul, my Caretakers were off the charts!  I don't actually know all they did because I was so groggy, but I appreciate Everything!!! 

     When we got the call last night that the they had collected enought stem cells. .  it feels like it was all worth it!!  We went for a nice celebratory walk around the Lake and had some dinner.   And, when we got back to the Marriott room, the light was blinking that we had "maxed out" the credit card!! 😁 Yes, it is time to go!! 😂😂

    I am am so excited for the next little break at home and then to come back up for Phase III (Transplant).

     And with my brain coming back, I think I figured out how people can comment at the bottom (?!) This blogging is a whole new adventure for me!!

Very good sign this morning!!

PHASE II COMPLETE!!

Yes, just got the call that they collected enough cells today! I get to head home on Saturday and have a little break before coming up on Nov 13 to go Inpatient.

Thank you all for your constant prayers!

Happy Harvest

October 31, 2018

     Well, we just got results that my numbers are finally high enough to try and harvest. We will be going in at 11:30am for about a 4-hour procedure.

     Please say some prayers or positive thoughts, I am feeling a little emotional and nervous.

     We'll try and update tonight.

UPDATE:

     Today, seemed to go well. It appeared they got a lot of stem cells, but the question now is how many? They need 4 million stem cells per every kilo of my body weight. . . a lot!  So, they just sent them to the lab to be counted. If there are enough, they will be frozen and ready for me for Phase III Transplant. If there are not enough, I have to head back to the hospital at 8 pm for more shots and were start again tomorrow.

     Some funny things today since it was Halloween! After telling me about possible nausea and vomiting, the nurse who comes into take my vitals is dressed as a slice of pepperoni pizza --really!!

     The nurses were so incredibly nice, they stay in the room the entire time and monitor everything. Two of them told me stories of being involved in the earlier HSCT trials for MS and were teary-eyed over the results! They said one man, who came in a wheelchair and almost blind had remarkable progress and still comes in doing well! YEAH!!!

FINAL UPDATE: Ughh!!! Only got half of what we need so we start all over again tomorrow morning at 7:30am.

Still Waiting. . .

October 29, 2018

     Convinced that today was the day for Apheresis, we got to the SCAA at 7am. The counts had gone up but not enough . . . another day of shots waiting! It brought Paul and I right back to the days of waiting for the babies to arrive. A couple contractions and we were at the hospital, only to be sent home many times!

     So, the latest plan is to get to the SCCA at 7am for labs, then go to right to the Apheresis floor and start platelets. By that time the labs will be back and they are hoping I am ready to go! Apheresis usually takes about 4 hours and they say it can be mild to moderately uncomfortable. The usual: nausea, vomiting, headaches, dizzy, etc.

     After getting the news that we'd probably be starting tomorrow, and I was feeling pretty good, we took a beautiful walk around the Lake in front of our hotel and watched the sea planes land. . . what a great way to commute!

     It almost felt like a little date night and we tucked into Dukes Chowder House! Paul loved his Seafood chowder and the Happy Hour and I enjoyed their vegan stew (I think it was the first non-plain white food I've eaten in days!) Some substantive to get those stem cells moving!!

Again, thank you for all the continued thoughts and prayers and well-wishes!!!

Sleepless in Seattle

October 27, 208

     Odd night of minimal sleep. Between the Steroids and the Growth Factor Injections, they create insomnia. . . but unbelievable fatigue so its a strange foggy combo. I really thought that meant my stem cells were going to be full blast into the blood stream by today. I was rocking a new headscarf and earrings, feeling very Bohemian, (kinda Rhoda from MaryTylerMoore)  and ready to go! But it turned out, we need one more day.

My new Pirate look. Actually the earrings have all these beautiful silver droplets that are representing all my new, healthy stem-cells to come!

     I was ordered to stay very low and isolated to make sure no infection creeps in. It turned out to be a great day though. Some weird advice from the doctors is that you need lots and lots of calcium before harvesting. . .tons of cheese! For those of you who know me, I have been a vegetarian, pretty much vegan for over 40 years! But the body is so fascinating.  I am walking the hospital halls eating cheese sticks and sugar-sweet apple juice. Later,  Paul went to Whole Foods and got me the richest Mac and Cheese ever, which I then topped with more Parmesan! And to finish it off tonight, they have recommended melted ice cream. . .

Melted Coffee Haagen-Daaz

     I'll go again in the morning for labs and shots and, fingers-crossed, the Apheresis!

    I received so many nice messages from home today and appreciate everything so much: from feeding Niccolo, to walking the dog, to doing laundry and vacuming! THANK YOU ALL!

Almost too tired to post. . .but doing well!

Friday October 26

     Kind of a rough night with bone pain and insomnia, but was assured this morning that that is good. It means my stem cells have left my bone marrow and moved into the blood stream. So today was just the hope that the stem cells will get mobilized and unite! The goal is to have enough cells in the blood stream to only have to harvest once!

   Busy day of labs, injections, bandage change, head shave and little walk. I'm going to take my meds and call it a night! Oh, and guess what? I am not a natural blonde😱

Moving along through Mobilization!

October 24, 2018

      So, yesterday started with labs and injections, but I also a lot of uncontrolled nausea. Unfortunately, the aids for the nausea brought on a lot of dizzy side effects. Then, my sodium and potassium levels were so low that I was having a very hard time getting enough fluids. It's just so odd to have the nurses say drink juice and eat salty chips! Forty years, I've been telling myself "Don'd touch chips! You can never just eat one!"

     Paul and I did walk to a grocery store and load up on some other healthy food, but I was too tired to walk home. Loving Uber, here!  When we got back to the room, there was the most gorgeous floral arrangement from the Alameda County Public Defender's Office and it was so appreciated by myself and Paul. I crawled into bed early, covered in the most beautiful knit prayer shawl from the women at Our Lady of Grace in Castro Valley.

     This morning, I think we did a little better and started the day with oatmeal before loading up up on all the pills.  My counts are beginning to plummet, which is what they want before they can collect the stem cells. This puts me in a more fragile state, a little isolated so I made need some platelets tomorrow.  But, I am hoping to collect stem cells by the end of the weekend!

     After a long nap, we made it back up the hill to pick up more prescriptions for tonight. Got a quick call from home that the dog had gotten sick in the living room, but within minutes the door bell rang and the Amazing Zafiratos had dropped off a pizza for Niccolo and taken Rocco up to their house for a play date!

     Finally, took a little walk along Lake Union and had just enough fresh air to head back up for the night.

    Thank you again for all your amazing well-wishes!!

Phase II: Labs, shots, Aperesis Intro and . . .fun lunch!

October 22, 2018

     The days are getting more regimented with labs, shots to stimulate the growth of cells, and then miscellaneous trips to the pharmacy working out kinks. Today, I also had a run-thru at the aperesis lab which was to make sure the the Hickman Line is functioning well enough to handle the stem cell transfer. It rans smoothly!

     Final instruction for today was to eat more salt. . and I was directed to the Lunchbox Laboratory. It was a fun burger place with lots of old lunch boxes from the 70's (I recognizes all most all of them!)

     Nextdoor to the lunch place was the Shine Store, for all cancer and transplant-related thing.  I had my mom with me so she loaded me up with a pretty fashionable selection of beanies, bandanas and rain hats. I don't feel ready for a wig yet. I have given myself a good trim, but they say I should be ready to completely shave my head on Friday. . .then, I will model my hats!

    Shift change right now as I sent my parents back to Californian and Paul is on his way here.  Niccolo got a chance to play in his golf tournament in Carmel with his dad and that was such a relief to me. And, Rocco, the dog had his first sleep over at the Zafiratos and had the time of his likfe! THANK YOU!!

     All these ups and downs are definitely the hardest on Niccolo, being left at home, but I have been assured that he is well-fed! Sophia is in a little more of a normal space back at school with her wonderful roommates and she also has the great support of Jack.

    Thanks for all the great thoughts!! Much appreciated!

Made it through First round of Chemo!

October 20,2018

     Yesterday was unbelievably long! Went through 3 nurse shift changes and they were all excellent.  I started at 615am and got out about 10pm. I think I got a fair sample of everything that was to be expected: nausea, vomiting, headache, wasabi nose, bladder issues and lots of different reactions to pain medications. I had retained to much fluid during the procedure and in order to release me I had to lose 5lbs of liquid. So they gave me a diaretic, but that just makes you totally lose control and meanwhile they are telling you to hold it so they can measure😂

      But eventually, I made it out and after a couple more bouts of vomitting, got to bed. I woke up feeling like I had been hit by a truck and that pretty much persisted all day. I went for my labs and first round of Neupogen shots to stimulate my bone marrow. This will be my new routine for the next 10 days until they are ready to collect the stem cells. 

    For every step that seems dreadful, I somehow make it though!

Phase II Placement of Hickman Line

Thursday, October 18

     Long day, but I did okay! My parents are here and we drove over to UWMC at 7am. Again, the fear and hype of getting the Hickman Line was far worse than the reality. I think the repetitive explanations of the procedure and risks (and pictures-yikes!) are what get me anxious.

     This was the first time I have seen an operating room, not on TV, and it was pretty impressive. They explained things again and then finally started dripping in my cocktail for sedation. Very soon after, a spotlight came on and I saw my name in lights!  I was ready to sing! Just kidding, it wasn't that glamorous, it was an extra-large monitor with my full name in bold and all my medical stats flashing. But, I did feel like I was on stage. Clearly, the cocktail the nurse mixed up was a success! 

     Before I knew it, they raised the curtain and the show was over.  Then, I went to recovery and was released by 1pm. I had been fasting since the night before and was so hungry. The pharmacy wait at the hospital was a disaster so I took the pain prescription with me to fill later. However, as soon as we got in the car, I realized I needed something for the pain right away. We made a quick detour for Advil before we got to a great wood-fired pizza place in University Village.

     By the time we got back to the SCAA, the Advil had worn off and I really began to feel the pain. It is very tender and sore, mainly at the entry point above my collarbone. SCAA gave me some Tylenol with Codeine and things are better now.

     I am back in my room, taking it easy because tomorrow is going to be another very long day.  I'm really tired, but a little nervous to lie down and sleep with the two tubes coming out of my chest. . .the other patients I've talked to say that they are not as delicate as they look and I will get used to them in no time.

      Tomorrow, my day starts at 6:15am with labs and then a high-dose of chemotherapy until 9pm.  The doctor says this first treatment will be a good indicator of how I do next month when I have the 7-day round of chemo inpatient. So, thank you for your thoughts and prayers!

     And a HUGE thank-you and best wishes to my parents who will be with me on their 55th wedding anniversary!!

Back in Seattle for Phase II

October 15, 2018 Back in Seattle for Phase II

     I had whirlwind weekend trip back home. I was really only home for a day and then Niccolo and I drove Sophia to LA for her second year of college! (Photo of our quick lunch at Shake Shack in Hollywood). On Sunday, I got in a quick trip to Costco to load up the house with supplies for the boys! This is so hard being away and worrying about them. I also squeezed in a nice shopping trip with my mom for some cozy "patient-clothes".

     I arrived back in Seattle this afternoon for Phase II of the HSCT treatment. I have checked into the Marriott Residence Inn which is located on Lake Union.  It is right next to the Seattle Cancer Care Alliance, where I will be having this outpatient portion. I will miss my luxurious accommodations at the Harmon's house in Magnolia, but this will make sense as I have to be at the SCCA every day at 8am for Labs and injections and possibly infusions until it is time to collect the stem cells (10-24 days).

     During this outpatient procedure, I am required to have a 24-hour care-giver and my parents and Paul are going to take turns. My parents will arrive on Wednesday to get me started. Paul will hold the fort down at home and get Niccolo to a golf tournament in Carmel.

     Early Thursday morning,  I will be admitted to the University of Washington Medical Center (UWMC) so that they can put in a Central Venous Line, called a Hickman Apheresis Catheter. Honestly, I am most nervous about this procedure. I have never had surgery and the idea scares me. The doctor was funny though, he told me not to waste my time worrying about this. . .save my fears for the Chemo!

     Then, on Friday they will begin treatment for Mobilization and Collection of stem cells!  I report to SCCA at 6:30am for labs and then the first round of chemo which will take all day. This single-day of chemo is followed by daily injections of Neupogen which moves the stem cells from the bone marrow into the bloodstream. Once they get the stem cells, they will freeze them for Phase III (The Big Chemo blast and Transplant).

Pre Testing Weekend

October 7, 2018  Pre Testing Weekend

     So, I started Friday afternoon a little bummed because I wanted to be home with my family. But, after looking at the weather, I saw that the sun was supposed to come out on Saturday and I should really take advantage of a nice day in Seattle!

     Christy and I took an Uber to Pier 52 and then walked onto the Ferry to Bainbridge Island. It was so beautiful and the fresh air on the water felt great! Last time I was on the water up here was the summer before my first MS symptoms appeared. The irony of coming back here twenty some years later to get healed was not lost on me. This is quite the journey and I really felt at that moment that I was in the right place!

    Bainbridge Island was such a treat. . .so many nice shops, delicious food and adorable dogs! The  chocolate Lab in the picture, Walter, was hilarious. He was snuggled right inside the door when we walked up but as soon as the sun came out from behind a cloud, he hurled himself onto the middle of the doorway to soak in the rays!!

    I knew today was going to be dreary, but I bought a down vest yesterday and swore it would help motivate me in this weather. It did! I drove over to Discovery Park and walked a gorgeous 3 mile Loop.

   Then I went to a local market and bought some vegetable soup for dinner. I feel like I'm living the life of a little old cat lady, minus the cat!

Pre-Testing Phase (4)

October 5, 2018  Pre-Testing Phase (4)

     Yesterday, was a light day, but it wasn't fun. Of course, I had more labs (I don't know what they are doing with all this blood!). In the afternoon, I had a lumbar puncture (spinal tap), which made me nervous. It went fine, but the long needle and no lollipop had me a little uneasy. They nurse was fantastic and numbed me up, but waiting for the spinal fluid to drip into the vials seemed to take forever.  Near the end, I got a little faint-headed and they had me lie down for quite awhile afterward. They also gave me a lot of caffeine (diet Cokes), which is supposed to ward off possible headaches from the procedure.

     Today, I went to Cardiology Center in Edmunds. It was about a 40 minute drive in the rain. I still think it is pretty here, but it's starting to get a little dreary. I had an echocardiogram (ultrasound of the heart) to make sure my heart can handle all the upcoming chemotherapy. I wandered around the town of Edmunds for a bit and had a nice cup of coffee. These Washingtonians really know how to make coffee!

     Then, I made my way to an office at UW for a gynecology appointment. I was a bit early so I toured in my car around the University area for awhile. Like any University town, there was no parking! I just don't know if I could motivate myself to go to classes in this weather! It is so drippy and no one uses umbrellas. . .you just get wet.

    After that appointment, I was finished for the day. I got a bit teary because I don't have any appointments this weekend and my daughter comes home from New York tomorrow. I thought about flying home for the weekend, but last minute flights are $300 one-way! (Southwest is only cheap if your reservation is 2-3 weeks in advance).  So, I'll just have to wait until Wednesday. The doctors are letting me fly home for a couple of days. It should be fun, we will drive Sophia to LA and get her all set up for Year 2 of college. Then, I will fly back up to Seattle on Monday for the final testing and Phase II of the Transplant (Mobilization and Collection of Stem Cells)!

Pre-Testing Phase

October 3, 2018   . . . Pre-Testing Phase (3)

     So, I survived the bone marrow aspiration. . .it wasn't as bad as I had made it out to be! The professionals at SCCA know what they are doing and they are GOOD! The nicest nurse promised to get me all "marinated" with meds before she used the big needle. We had Def Leppard playing in the procedure room and a couple of very deep breaths back to 1988 and it was over. 

     They gave me yesterday off and I was grateful, because my hip was a little sore after all the meds wore off. Christy and I went walking at Discovery Park and then to lunch at a lovely little diner, Serendipity, in the Village of Magnolia.  Of course, when I went to treat, my credit card was denied twice!! So embarrassing, but I forgot to call and let them know I was in Seattle.

     Today, I was back at SCAA from 8am-4:30pm. I was greeted with a surprise IV for the day, lots and lots of labs (many duplicates because they do a clinical set and then a trial set), another physical, a transplant team meeting, pharmacist conference, pulmonary function tests, and a brain MRI with contrast (hence, the MRI). Thank goodness it is all in the same building and I just go from floor to floor!

     It really feels like Fall here now and I am getting cold! Before testing tomorrow, I think Christy is going to take me shopping for a down vest-- it seems to be the local's uniform! Then, I'll have a short day of labs and a lumbar puncture.

    Sounds like the boys are doing fine at home as long as the A's keep making them happy! Go A's!

Monday, October 1, 2018

Monday, October 1, 2018

Waking up today a little nervous. I am still in the testing phase and nothing has been bad yet. However, this afternoon I will be having a Bone Marrow Aspiration. Just a hollow needle in the hip to extract some cells, but it sounds painful! Apparently, they give me some meds and a Fentanyl lollipop. . .

I caught a cold from the plane, so over the weekend, I spent a lot of time watching movies and taking Nyquil. I did take a couple of walks and am capturing some great images of Seattle. Oh, and Christy made me tomato bisque, veggie fritatta, and spinach salad so don't feel sorry for me. . .I am blessed!

Getting Settled in Seattle!

Thursday, September 27, 2018

     After a whirlwind week of wonderful visits with friends and family, Paul and I arrived in Seattle on Tuesday.  It is a beautiful place! We are so fortunate to have the most kind and generous friends from law school, Christy and Bill, that live up here. They have completely opened their doors and are looking after me for two weeks, while Paul goes home to be with Niccolo and the pets. I am in a lovely studio apartment that is attached to their house. And, I think I might even learn to cook if I watch Christy. Our first night, she made the most delicious roasted spaghetti squash with a homemade portobella mushroom sauce! Oh, and at the same time, baked some homemade granola for breakfast!

   I rented a car and will be able to handle most of my appointments on my own. There are a few where I am sedated and Christy is going to get me to and fro. Yesterday was packed with appointments from 10am until 4pm, but treatment at the Seattle Cancer Care Alliance (SCAA) is so streamlined and efficient. The picture below is a view from the Lobby of the 6th Floor Bone Marrow Transplant Clinic. They immediately assigned me to a team that will be with me through the entire process. I am on the Gold team. Then, I had a lot of blood work and other labs, a physical, and a very thorough meeting with the nurses and the scheduler. Today, I will be having a chest x-ray, an EKG, a meeting with a the team social worker and a more detailed introduction to the entire transplant team. 

    Paul got me all settled and just left for the airport to go home, but I know he felt comfortable leaving me up here in the hands of SCCA and our friends. I sensed he may have been a little envious of my set up, it is pretty amazing! Christy filled the apartment with coffee, country bread, jam and all sorts of other goodies! 

  But only two days in and I miss my kids terribly.  Sophia is away at school so my absence should not affect her too much, but Niccolo is a junior in high school and I want to be there to make things normal for him. I just have to tell myself that this is what is best for our family's future. Two and half months is just a drop in the bucket in the big picture of life.

   

Problem Day 3

November 24, 2018 .

The hospital gave me a self-regulated morphine drip and I think I deleted my entire blog. I wanted to be a liitle ahead of the game and try blogspot (Cariing Bridge kind of made me nervous).. Yikes!  stay tuned.  I am alive though, on DAY 3, with a horrible case of mucositus.