8/23/2017 – General Check-up with PCP.
8/23/2017 – Emergency CT and Ultrasounds at Bristol Regional Medical Center (BRMC).
8/23/2017 – Call from PCP that Radiologist cannot see uterus, just a giant mass. Left ovary not visible. Uterine carcinosarcoma suspected. Referral to gynecologic oncologist in Kingsport, TN, has been created.
8/24/2017 – Evening call from colleague of PCP telling us the bloodwork came back and to go to the ER of our choice and get an emergency blood transfusion. Also ask to speak to oncologist on call. Referral not being followed up on quickly enough.
8/24/2017 – Triaged and admitted at BRMC. One unit of blood received.
8/25/2017 – 7am, General/Vascular surgeon comes to room to discuss options. Not oncologist but many years’ experience in gynecology. Says I am decompensating and cannot wait any longer. Need surgery today to remove 32lb tumor. It is 30cm (11.8″). He can have me taken for prep at noon and in surgery by 1pm.
8/25/2017 – 2 1/2 – 3-hour surgery to remove 95% of tumor, 8lbs of fluid (ascites). Took 4 surgeons to remove tumor. Partial hysterectomy (everything but cervix). Cervix and 5% of tumor left due to severe blood loss. 2 units of blood received in surgery. 46 staples to close vertical incision.
8/25/2017 – 8/27/2017 – In ICU. One unit of blood received on 8/26/2017.
8/28/2017 – 8/31/2017 – In regular room.
8/31/2017 – Discharged.
9/6/2017 – Staples ready to be removed, much to surgeon’s surprise. I had been so malnutritioned from the anemia and everything else, he didn’t think this could really happen in my first post-op checkup.
We receive the diagnosis, the pathology report, and the surgeon quietly tells my wife that it’s not a good prognosis. He told me I should get a second opinion, and that if I need help getting into Memorial Sloan Kettering, he’ll do whatever we need. Amanda got us in super fast, on her own.
9/20/2017 – Second post-op check-up. When Dr. Greene saw me, he grinned and said something to the effect of, “Why, aren’t you the picture of a cure!” I’m able to drive without any problems already!
9/20/2017 – Met with local oncologist, Dr. Musgrave. She reviewed with us what she called the 2017 ULMS protocol – Gem/Tax.
9/25/2017 – We meet with MSKCC Chief of Gynecology/Surgical Oncologist Dr. Nadeem Abu-Rustum. He’d consulted with medical oncologist Dr. Martee Hensley. He told us to get going on the chemo our oncologist wanted to do (and now that we know more about Hensley, we really know why – all I knew then was she was a sarcoma specialist). Get CTs every 3 months. He gave me a hug before we left and told me to stay strong. Seeing this doctor turned out to be a mistake. We didn’t know at the time that he wasn’t a sarcoma specialist. We didn’t know that surgery was the gold standard for leiomyosarcoma either, so we didn’t push enough when he said there was no benefit. We still regret this decision.
10/6/2017 – Port surgery
10/9/2017 – Baseline CT. Starting size of tumor, post-surgery/pre-chemo is 11cm by 5x6cm (about 4×2”).
10/10/2017 – Day 1 of Cycle 1 of my very first chemo. Started Gem/Tax (Gemcitabine aka Gemzar, Taxotere aka Docetaxel). Gemzar on Days 1 and 8, every 21 days. Taxotere on Day 8 only, every 21 days. Neulasta given on day 9 of cycle. This was a Gemzar-only day.
10/15/2017 – Developed measles-like rash in reaction to Gemzar. It was moderately itchy but bearable. The rash did not repeat. Chemo RN told me that sometimes people get an initial rash reaction to chemo, but then it doesn’t come back. I was lucky that this was true for me. Unfortunately, in my case, this may have been a sign of things to come with the Gemzar.
10/17/2017 – Day 8 of Cycle 1. (Gemzar & Taxotere)
10/31/2017 – Day 1 of Cycle 2. (Gemzar)
11/7/2017 – Day 8 of Cycle 2. (Gemzar & Taxotere)
11/21/2017 – Day 1 of Cycle 3. (Gemzar)
11/28/2017 – Day 8 of Cycle 3. This is the last day I receive this chemo regimen. (Gemzar & Taxotere)
11/21/2017 – Hemoglobin down to 7.2 (even lower than it was before the first surgery) and I’m sent to the hospital after chemo to receive 2 units of blood. (They’d tried me on iron supplements, but it made me nauseous, so they were going to do IV iron that day until they saw my CBC.)
My wife asked at this appointment if the tumor had been tested for ER/PR. It was and is negative. (Edited on 7/1/18: PR is negative, ER is weak. I want to find out just what percentage equals weak. Still trying to get Highlands Pathology to test for Androgen Receptor. Update: Nearly 10 months later, Pathology finally gets around to testing for Androgen. Negative.)
11/28/2017 – Day 8 of Cycle 3. That will be the Gem and Tax and OnPro body patch of the Neulasta, and maybe the IV iron unless I need another full transfusion again. Either way, it will be a long day! (IV iron isn’t any faster than a blood transfusion.)
12/1/2017 – Waiting to hear if I can get IV iron after my CT scan. My hemoglobin was up to 9.6 on 11/28, but I’m still really fatigued.
12/5/2017 – I received my first mid-chemo CT to see if the chemo was working.
12/5/2017 – I had a meeting with my oncologist, Dr. Musgrave. The CT read, “massive uterus” but I no longer had one. My doctor thought it might be fluid, since the CT also reported the pleural effusion had increased. She scheduled me for an echocardiogram (ECG) and abdominal ultrasound on 12/7. It also showed pericardial (heart) effusion.
12/6/2017 – I received 1 unit of blood. My hemoglobin was down to 7.3. I needed 2 units, but with the pericardial effusion, my doctor didn’t want to risk over-stressing my heart.
12/7/2017 – I had the echo and ultrasound.
12/12/2017 – I receive the results of the previous tests. The good news is my heart is in really good shape, and the pericardial effusion is so minor that my doctor isn’t worried about it. The bad news is that the supposed fluid in my abdomen isn’t fluid. It’s the tumor. It grew. After surgery but right before chemo*, the tumor was 11cm by 5.6cm by ? (not sure what the 3rd number was, aka 4.3″ x 2.2″). As of today, it is about 16.3 cm x 8.1cm by 16.4cm (aka 6.4″ x 3.18″ x 6.45″). THIS is what the CT called “massive”. (*We’ve never been told the size of the tumor immediately post-op, unfortunately.)
Also, the pleural infusion is large, and now I need to have an ultrasound-guided thoracentesis this Thursday to have the fluid drained and checked for malignancy. I really, really, really, really hope it isn’t malignant. I’d really like this news to be good. If it’s malignant, it means the cancer has spread into my body fluid.
Since the chemo isn’t working and because the gemzar might have induced hemolytic-uremic syndrome, I will not be having any chemo today. Dr. Musgrave proposes a regimen of doxorubcin (Adriamycin) and olaratumab (Lartruvo) but is going to consult with Memorial Sloan Kettering first. Amanda asked her if she can get the tumor tested for specific genetic mutations so we can find out if I’m a candidate for targeted drug therapy / immunotherapy. Dr. Musgrave said she would talk to MSK about this, since she believes they have access to Foundation Medicine.
She also told us that if the effusion is malignant, I am not a candidate for surgery. I may be able to have palliative surgery, if it will help quality of life, but it wouldn’t help with getting me into remission/cure. I want the rest of the tumor out. And my cervix to help reduce risk of recurrence. I think I would feel better, no matter what, if the tumor was gone. We think Dr Musgrave implied that she would want me to have my surgery in NYC, but we may have misunderstood. I would definitely have a very good surgeon though, if that were the case. My original surgeon here at home, sadly, is retiring at the end of the year, so I would have to find a new surgeon in any case.
There are advantages and disadvantages to having surgery in NYC, so we’d really have to think about all the angles.
12/14/2017 – At the hospital at 7:30am (way too early!) to have the thoracentesis. The nurse is wonderful. Amanda had watched a video the night before on how this procedure is done. I declined to watch it. After the nurse explained it to me, Amanda said it was nearly verbatim for what she watched, so now she feels extra comfortable. After I’m prepped, and the nurse has ordered the tests for the fluid, she takes Amanda back to the waiting area, and I am taken to a procedure room.
They took 1.3 liters (just under 5.5 cups) of fluid from around my right lung. The radiologist told me to have Dr. Musgrave schedule me to have the left side done next week. They do the thoracentesis from whichever side has the most fluid. Unfortunately, mine are equally bad. But they can only do one at a time. The way I felt during healing gives me a good idea of why. They could have done it the next day, but we were going to be in Roanoke. Amanda has called the Cancer Center and asked for me to be scheduled for the other side next Wednesday morning, but we haven’t heard back yet.
12/15/17 – 12/16/17 – Various test results, some for the pleural effusion, are starting to come back via the Wellmont app. Nothing yet which tells us definitively either way.
12/19/17 – Pleural effusion is BENIGN! And my labs show my numbers, including my eGFR (kidney function) is getting better! My RBC is still low, but it is very slowly going up. My hemoglobin is still stuck around 7.3 – 7.6, but we suspect that’s due to the tumor regrowing. Dr. Musgrave is consulting with MSKCC. She has reached out but Dr. Abu-Rustum is out for the holidays, coming back 1/2/18. I want to have surgery before any more chemo. And I want the tumor tested as if it were the first one to make sure there are no discrepancies.
12/19/17 – My weekly blood transfusion.
12/20/2017 – Second thoracentesis. Only half the amount of fluid drawn. Looks the same otherwise.
1/3/2018 – Dr. Musgrave hadn’t heard from the NY doctor yet. Hemoglobin finally up — still low but not longer critical at 8.9. RBC slowly coming up. Kidney function up! First time since 11/21/17 where I don’t need a blood transfusion!
Misc days – Speculating I might have a food allergy to beef, and maybe sausage too, now. Have read about cases where people get food allergies, usually temporary, after blood transfusions. (They don’t screen for allergies.) If the trigger food(s) can be avoided for several months, the allergy may go away, if that’s what it is. Beef/sausage didn’t make me sick before but now they do. Update: At some point, this stopped being an issue. Don’t know what was causing this problem. Glad it was temporary!
1/9/2018 – Dr. Musgrave says my lungs sound pretty clear! Kidney function just 2 points under normal now! Other labs getting Closer to Fine. She told us that unfortunately, the NY doctor is refusing to even do a surgical evaluation. Says I’m too high risk. One of the reasons we picked him is an article we read showed that he did innovative, high risk surgeries! But we’ve also since realized he’s not listed as a sarcoma doctor on the MSKCC website…. And if he thinks it is too high risk, we don’t really want him doing the operation. Dr. Musgrave is getting the process going for me to start Doxorubicin / Olaratumab, possibly as early as next week. But she also told us to go ahead and see if we can find a sarcoma surgeon who would at least do an evaluation.
1/16/18 – Scheduled to have another echo and ultrasound.
1/17/18 – Scheduled for labs and chemo education for new chemo drugs. Learned that ultrasound showed tumor has grown significantly. But in good news, learned the echo showed that the pericardial effusion is all gone!! Dr. Musgrave working to get me into see Dr. Samuel Singer at MSKCC. Amanda gave her the paperwork for Foundation Medicine to get my tumor tested for genetic mutations in their FoundationHEME panel. This panel is for leukemia, lymphoma, and sarcoma.
1/18/18 – Starting Doxorubicin/Olaratumab chemo regimen. (Cycle 1, Day 1)
1/23/18 – Scheduled to meet with palliative care person at cancer center to help with pain management. (Was already prescribed pain medication on Jan 9 and it’s made a very noticeable difference!)
1/25/18 – Cycle 1, Day 8
2/8/18 – Expected start of Cycle 2, Day 1, but WBC and neutrophils too low.
2/15/18 – Cycle 2, Day 1. Approved for Neulasta On-Pro Body patch!
2/23/18 – Appointments with sarcoma experts at Roswell Park Cancer Institute, Buffalo, NY. Received a lot of good information, but told that I am not currently a surgical candidate. Too risky.
2/27/18 – Cycle 2, Day 8.
3/1/18 – “Baseline” CT done for current chemo, but with only December’s to compare it to, it’s harder to tell how much the chemo is/isn’t working. Will need to do probably 2 cycles, then have another CT, and go from there (per Dr. Grand’Maison at Roswell).
3/13/18 – Cycle 3, Day 1. CT shows growth (but, again, it may have grown more between end of November and starting chemo in January, and the tumor may have shrunk some and we have no way to tell until there’s another CT), a lung nodule (4mm), and implants (regional metastasis).
3/20/18 – Cycle 3, Day 8 – WBC and Neutrophils low (Neulasta appears to have failed) but Dr. Musgrave okays treatment, said olaratumab unlikely to cause any problems with my numbers.
3/26/18 – We go in for extra bloodwork (CBC) only to see if I’m safe to travel (for pleasure) to Parker, TX (near/in Dallas, TX), to go to the 40th anniversary event for the TV show Dallas, where we’ll get a chance to tour Southfork, meet 4 of the cast members (Linda Gray, Patrick Duffy, Steve Kanaly, and Charlene Tilton), among other cool things! My numbers are back in range or close to it (WBC and neutrophils in range), and we’re good to go. Went back home so Amanda could get our tickets (her Mom is going with us). We’re driving – leaving early Thursday morning, and coming back sometime next week, the 4th at the latest.
4/5/18 – Echo done. Ejection fraction still 55%. Echo is normal!
4/5/18 – Cycle 4, Day 1. Zinecard (chemoprotectant for the heart) started today. While there are no signs that doxorubicin has damaged my heart, this could still happen, even months to years later. Zinecard will help protect against that as much as possible. (By my understanding, some people do not have a cardiotoxic reaction to Doxorubicin. My hemoglobin is the highest it’s been since before I got sick! was up to 11.9! 11.9 is *not anemic*!! Also, the trip to Dallas was fantastic! So much fun! You can watch the video Amanda made of us at Southfork here! (Have your sound on!)
4/12/18 – Cycle 4, Day 8. Pretty uneventful. Good numbers. Got the Neulasta patch at this appointment. Was told we’d get my next CT scheduled on Day 1 of Cycle 5.
4/26/18 – Cycle 5, Day 1. Still uneventful. Office visit with FNP who was very nice and explained some things on the CBC about why my platelets were going up and down (related to WBC, RBC, hemoglobin, etc). Nothing to worry about. Numbers all pretty good. No problems with starting Cycle 5! Will have Day 8 on May 3, and will get Neulasta that day. If everything goes well, Cycle 6 will start May 17th. May 17th will also be when I get my next CT scan so we’ll finally know if this chemo is working as much as we (me, Amanda, oncologist) thinks that it is. I will be having the CT at the hospital this time, as I had a delayed infusion reaction to the last one (worst itching ever!), and have to be premedicated this time. Hopefully we’ll find out the news about the CT that afternoon at the Cancer Center.
5/3/18 – Cycle 5, Day 8 – Numbers were low but not too low for chemo. Cleared by nurse to travel to NYC for about a week. Getting to see my Mom and several friends! Had some mild nausea. This has only been happening on/after Day 8 when I only get Zofran.
5/18/18 – Started Cycle 6. I was supposed to have my CT early this morning, but because I had a delayed IV contrast reaction after the last one, I was supposed to be premedicated. That instruction got lost somewhere, so I couldn’t have the CT (drank the prep for nothing – at least it was filling!). Got it rescheduled for even EARLIER the next day (5/19/18). Dr. Musgrave promised to get us the results ASAP.
5/22/18 – Received voicemail from Dr. Musgrave. CT shows progression of disease. Need to be seen immediately. New chemos to consider. Maybe clinical trials. Was scheduled to see her the 24th, it got moved to the 23rd, and got the cats boarded and left immediately so we wouldn’t have far to drive the next day.
5/24/18 – Cycle 6, Day 8. CT printout incredibly disorganized and vague. It left out so much of the information we’re used to seeing about all the chest and abdominal organs from past CTs. Last CT mentioned a 4mm nodule in my lung – which could be anything (it’s on the same side I had a lot of pain from the first thoracentesis, so it’s possible that it is scar tissue). It was one of the things we were waiting to hear about – did it grow. This CT says “still tiny”. Tiny and shrank? Tiny and same size? Tiny but a little bigger? The last CT said I had a mass on the right side of my liver, this one says it’s on the left side.
The report shows growth in the transverse dimension, but doesn’t mention the other two numbers at all. Usually we get something back like this: 1cm x 2cm x 3cm (obviously in larger numbers though). This just gave us one. My abdomen looks a lot smaller than it did, but we have no scientific data to back this up; data we’d been waiting anxiously for!
This was very frustrating!
The one upside was the growth of the primary tumor only equals about 1.5cm since March 1st, which is a MUCH slower growth rate than any time in the past. So there seems to be some stability with this chemo combination, but due to the toxicity of doxorubicin, I can’t be on it forever.
I know some people continue on with just olaratumab to maintain stability. That option wasn’t mentioned (yet, anyway). It could be that I’m resistant to doxorubicin. It could be that there’s just too much tumor.
Amanda planned to ask Dr. Musgrave about my going to Dana-Farber Cancer Institute, but before she could ask, Dr. Musgrave brought it up. I still would like surgery, and Dr. Musgrave says that DFCI tends to be much more aggressive about being willing to do surgery.
Amanda has gotten me registered with DFCI, and now we’re waiting on an appointment. Dr. Musgrave was going to try to expedite it. I will hopefully be seeing Dr. Suzanne George. Amanda has read lots of good things about her and Dr. Musgrave said she was wonderful to work with.
Dr. Musgrave also got me an appointment with a local cardiologist, who will monitor my progress through the rest of my treatment.
5/25/18 – Saw Dr. Eduardo (Ed) Fernandez for the first time. He’s the cardiologist Dr. Musgrave referred me to; we really like him.
5/30/18 – Having my next echo today. Will have follow-up with Dr. Fernandez on June 8.
6/7/18 – Cycle 7, Day 1. Today’s dose of doxorubicin would have put me over my lifetime limit. The pharmacy flagged it. Dr. Musgrave was out-of-state, so the doctor in the infusion center made the decision for it not to be administered. I still had the olaratumab. I had a feeling my hemoglobin was low again because I could hear my heartbeat in my ears. Sure enough, it came back as 7.9 so they they scheduled me for a transfusion the next day.
6/8/18 – Saw Dr. Fernandez in the morning. Echo was good – ejection fraction is 57% (2 points higher than previously). He said he doesn’t see any signs of problems, but cautioned us again that doesn’t mean I couldn’t still have doxorubicin induced cardiomyopathy in the future — even as far away as 10 years. He said now we’re at the point where we all need to decide if the benefits outweigh the risk.
After that appointment, I went to the hospital to receive my unit of blood. The last time I needed transfusions, one unit would only do me for a week, and then I’d need another one. Since I didn’t get the doxorubicin, we were really curious to see how much of a difference it would make.
6/14/18 – Cycle 7, Day 2. Asked if I would receive the missed dose of doxorubicin. Told no. That was fine with me. Olaratumab only again. Also, now I’m nearly a month away from my last dose of doxorubicin, so we await the CBC results anxiously. My hemoglobin has rebounded spectacularly! Now it’s at 10.4! That’s still under the lowest normal number (11.7), but a significant improvement! This really seems to tell us that it was the doxorubicin tanking my hemoglobin these past several cycles, not the tumor.
6/25/18 – I had my first appointment with Dr. Michael Nathenson (medical oncologist) at Dana-Farber Cancer Institute, in Boston, MA. It was probably also my last. He is certainly very nice, but the impression we were given was a doctor who really explained scans (he flipped through them quickly), was very aggressive (just recommended the next chemo), and while he did get us an appointment with surgeon Dr. Jiping Wang, he said he didn’t think surgery was an option.
6/28/18 – Dr. Wang declined to operate, saying it was too risky. A general surgeon performed an emergency surgery on me on 8/25/17, in a much more high risk situation, where there was very little time for any planning ahead, and I had a lot of blood loss. Dr. Wang won’t even try. Do the chemo. Do the chemo. What happened to surgery being the gold standard? What if I get back to how I was last August, and we’re 12 hours away from any sarcoma surgeons, and I can’t even go back to the general surgeon who helped me last year (he retired)? Then what? My tumor is nearly as large as last August. It’s been nearly a year, and nothing has really changed except I’m bald.
7/3/18 – Had my baseline CT for the Yondelis. Told the radiology nurse about how much trouble I was having breathing. She said they’d get the Radiologist to look at it right away. Within about an hour I was scheduled for a thoracentesis. She (aforementioned nurse) pulled 3 LITERS off of my right lung. (Equivalent of 8.5 12oz cans of soda if you need a non-metric visual. 😉 ) The Radiologist said I had hardly any lung left available on my right side (measured with his fingers, a piece about 2″ by 1″, that they got almost all of the fluid, and I should be able to breathe much easier as soon as I recovered from the procedure!
7/5/18 – Started Yondelis. It’s a 24-hour infusion.
7/13/18 – Had labs done to check my numbers since we’re going out of town next week. I thought I was going to need blood, but my hemoglobin was at 10.5, so nope! I did get a paracentesis (draining fluid from the abdomen). I had the same nurse again. This time only 1/2 a liter was removed. She checked and didn’t see any other pockets of fluid. I was hoping more would be there, but at least that amount is gone. I’m hoping that even though it wasn’t a lot of fluid, it will still help my back pain.
7/18/18 – I will see my cardiologist, Dr. Eduardo Fernandez again, for a check-up.
7/20/18 – Amanda and I will drive to Atlanta for the Sarcoma Alliance’s first conference. The SA is paying for everyone’s hotel room! The only one we didn’t think was very helpful was the nutritionist.
7/23/18 – We come back from the conference and will stay in town since I start Cycle 2 of Yondelis on the 26th.
7/26/18 – Started my second cycle. Had breakthrough nausea within first 5 days. Amanda worked fast to get orders faxed to Lewis Gale Medical Center (hospital) to have labs drawn on 7/30/18 to see if I was dehydrated (no), and to get a prescription filled for Phenergan gel to further suppress any nausea. Forgot to tell the lab I’d just had Neulasta, so they were very alarmed when they saw my paperwork, and very relieved to know why my WBC was so high!
7/31/18 – Breakthrough nausea progressed to vomiting. Thankfully short-lived (only 1 vomiting episode).
8/1/18 – Still have nausea, and dizziness if I bend over, but feeling a little better.
8/2/18 – 8/10/18 – Nausea and dizziness continue, but vomiting has not happened again. Also have very pale gums according to Amanda, and once had bright red spots too, but not hearing my heartbeat in my ears, which has happened every time I needed a blood transfusion.
8/6/18 – SSDI Interview (in person).
8/7/18 – Meeting with my supervisor and member of HR to tell them I’m unable to return to work by 8/25/18. That was the date I had to be in NED (No Evidence of Disease) by to keep my job. They couldn’t hold it past then. A year, unfortunately, is not enough time to be NED from this cancer. This seems to be true for many people, from things I have read.
8/9/18 – Approved for SSDI benefits.
8/10/18 – Amanda noticed early this morning that my toenails don’t look so good, and that my left big toe nail looks discolored and like it might come off. Dr. Musgrave said it’s trauma + chemo, but no infection. Phew!
8/15/18 – I had an echo today.
8/16/18 – Started Cycle 3 of Yondelis. Dr. Musgrave prescribed me a 3 day supply of dexamethasone to boost the anti-nausea meds. Some heartburn, but no nausea this time! I also had a thoracentesis today, in between my visit with Dr. Musgrave and starting the chemo. There was 3.3 liters on my right lung! I was guessing 1 – 1.5 at the most! Update: The dexamethasone helped. I was not nauseated this time. Just had a little heartburn now and again.
8/22/18 – EF is 59%. Dr. Fernandez said everything looked else good too, and I don’t need to come back for 2 months. As of now, no echo needed in that time!
8/25/18 – I’m getting up to 1700 on the incentive spirometer.
8/28/18 – While still short, my hair is getting pretty thick!
8/30/18 – I see a genetic counselor in Kingsport, TN. This isn’t about my cancer, this is to see if I’m carrying any mutations which would be good to know about.
8/31/18 – I have my “moment of truth” CT to find out if the Yondelis is working. Update: It isn’t.
9/6/18 – Labs and appointment with Dr. Musgrave to decide what we do next.
9/6/18 – Had another right-side thoracentesis. Another 3 liters taken off.
9/7/18 – This morning, Amanda got BCBS of TN’s COBRA department to expedite my COBRA paperwork from 2 weeks to 24-48 hours, and then she had the paperwork in her email by almost end-of-day today! She printed them, read everything to me, had me sign them, scanned them to PDF, and got them back to BCBS! Then she called (phone is super difficult for her, but she saves up her energy for the unavoidable phone times just for me) them back to make sure they got the papers, and then made the first payment for the last week of August and all of September. They told her since it was end-of-day/end-of-week, everything would still have to be processed Monday, but they’d put a rush on that part too.
The latest my policy should be re-activated should be Wednesday, September 12th.
9/10/18 – Reaching 1750 on the incentive spirometer. COBRA policy was active by noon today! This made it possible for me to be scheduled this week at Duke for a surgery consult!
9/13/18 – Genetic tests back. 83 genes tested. 81 were negative and 2 had inconclusive mutations. When they’re inconclusive, you’re told it could just be a hiccough in your DNA, and not anything to worry about. But testing is continually run, and if either of the inconclusives were to come back positive in the future, they would let me know. One of the mutations (MET) was the same variant as the mutation as in my tumor. My genetic counselor verified it was the exact same mutation as Foundation Medicine had listed, since FM uses different nomenclature. It was the same mutation. While it doesn’t change anything about hereditary risk for myself or my family, it could present a targetable variant for treatment for a clinical trial.
9/14/18 – Surgical consultation appointment with Dr. Andrew Berchuck at Duke Cancer Institute in Durham, NC. Update: In light of the forecast from Hurricane Florence, this was rescheduled to Tuesday, September 18, 2018, with Dr. Secord. As it is less than a 3-hour drive, we will probably go down that morning, since Tuesday is still looking like the least rainiest day!
9/28/18 – 10/5/18 – In Buffalo, NY, trying to get surgical consultation with Dr. Kane. In February, he said he never says never, and he’d reconsider operating if it became a palliative or obstructive need (wherein surgery would improve quality of life). His nurse told us he actually refused to operate in February because of how extensive the disease was and that he’d never operate now. And that I’d never be NED (well, not if no surgeon will try!). He wouldn’t meet with me in person at all, and black & white CTs do not tell the whole story about how well a person will/won’t do with surgery. We left without ever talking directly to him, much less seeing him.
10/10/18 – Labs & Appointment with Dr. Musgrave. Had to go for an emergency blood transfusion as my hemoglobin was 7.6.
10/11/18 – Interventional Radiology – I will get a pleural catheter (PleurX) inserted so that I don’t have to keep going in for a thoracentesis. I will receive Home Healthcare for 6-8 weeks. I went back for labs and to see a NP at the Cancer Center. My hemoglobin is 8.3. Not great, but at least not critically low. I have my baseline CT for chemo this afternoon and the plan was I’d start taking it this evening – but it didn’t pan out.
10/12/18 – Last night/this morning, we went to BRMC ER because I couldn’t pee. After 2 tries I had a Foley catheter in and immediately had 1 liter of urine drained (relief!). My hemoglobin was back to 7.6, and Amanda pushes the ER Doctor to do another transfusion.
10/14/18 – Home Health starts and I get 1/2 a liter drained. The PleurX placement hurts, but the RN says it is healing well and looks good. Amanda takes a photo as a baseline in case it changes appearance. I show the nurse a bruise that appeared on my abdomen the night before but she doesn’t seem concerned. The RN says someone will be back tomorrow to do labs, and Wednesday to drain my PleurX again, and she’ll check about the SCD’s we’re trying to get to reduce the lymphedema in my legs. They’re so heavy, I can barely pick them up to walk, get in the car, etc.
10/15/18 – No one shows up or calls. Amanda calls and Home Health says I’m not on the schedule but guesses someone can come Wednesday. Amanda tries to explain the labs are urgent, that I can’t start chemo w/o that information for my doctor. Eventually they call her back to say Thursday. 🙁 Insurance has been denying the chemo, but I have a sample bottle to get started with.
10/16/18 – Amanda receives an unexpected call from The EASE program from Cabometyx (cabozantinib). Amanda fills out a form, I sign it , and she sends it back. Within hours she receives an email that I am approved to receive Cabometyx FREE for a year! (Without insurance, it retails at $19,000/month.)
10/18/18 – Nurse comes, drains 1 liter. Doesn’t know anything about the SCD’s. Uncertain about the labs, but finally does them, but has to do an arm stick, despite the order for them to get heparin so they can access my port. It takes 2 days and 2 tries to get the labs to Dr. Musgrave. Eventually we gave up on them doing port draws because the order just wasn’t going through, and all the nurses who have come out have been very good at arm draws!
10/21/18 – Dr. M says she’ll check in morning for one of her nurses to follow up on the blood transfusion that she ordered — for Friday — but no one told us anything.
10/22/18 – Amanda has to call the cancer center about the transfusion. After some back and forth, she gets copies of my labs (hemoglobin is 7.5) to go to the ER because they can’t set-up for the transfusion center at Lewis Gale in Roanoke until Wednesday and they don’t want me to wait. Amanda also gets a transfusion order emailed to her. We finally get to the ER about 4:30pm. We’re not discharged until about 3pm the following day. My hemoglobin that evening was down to 6.9! So I get two units, and each one is done extremely slowly so as to not cause fluid overload, so it’s 4-hours per bag. And they don’t start the transfusion until around midnight. Everyone is very nice but the hospital seems rather disorganized. I was originally sent up to a room just to get me away from the germy ER, but somewhere during the night, they switched me to an inpatient admission.
10/23/18 – After much struggle they let us leave. A super nice Pharmacist walks us back to the ER entrance so we can get to our car easily (and not get lost in the hospital maze!). The plan is to pack and go to Abingdon, but we’re all so tired we decide to go in the morning.
10/24/18 – I took my first chemo pill (cabozantinib) at 12:45am. I will see Dr. Musgrave in the morning and Dr. Fernandez (cardiology) in the afternoon. Took first pill at 12:45am. This is a 60mg daily pill. No food 2 hours before or 1 hour after. Cannot be crushed or chewed. Must be taken with 8oz of water.
10/29/18 – Nurse comes, takes a liter out, and does labs. My hemoglobin is 8.6 – no transfusion!
11/5/18 – Saw Roanoke-area pain management doctor. Liked him. Switching to straight oxycodone without the Tylenol. This chemo has a risk of elevated liver enzymes. So far, so good, but I didn’t want to keep taking Tylenol if I didn’t need to be. And if we decide the Tylenol was really helping, I can take it as a separate pill and have better control over how much Tylenol I ingest. Dr. M. told me to try to stay under 3000mg/day, which is well below the suggested limit.
11/7/18 – Taking a chemo break, with doctor’s okay. We will contact Dr. M. again on Monday and go from there. It had gotten to the point that I couldn’t keep anything but water down due to heartburn. Started taking Zofran and Compazine today for the first time with this chemo. I don’t know yet when I will have the first “is it working” CT.
11/9/18 – I will have a consult appointment for the lymphedema in my legs. They are swollen, inflamed, and weeping (liters of fluid daily). I have been on an oral antibiotic to prevent infection since 10/24. That was a 10-day course, but Amanda sent a photo of my legs to Dr. M. on Wednesday, and she had her nurse send another prescription. Hopefully the lymphedema therapist will have some suggestions. My legs are so heavy I can barely lift them, my skin is tight, and peeling, and my feet really hurt because they are so swollen.
11/14/18 – I will see Dr. Fernandez and Dr. Musgrave. Dr. Fernandez was nice enough to drain my PleurX catheter, which helped from what I remember. I was pretty out of it in hindsight. I was admitted to the hospital from the cancer center, via ambulance, for critically low sodium and critically high potassium. Dr. Musgrave was concerned I might only have days.
They got me stabilized. I don’t remember much of what happened in ICU.
More on the above later. Maybe. Her period in the hospital was grueling. I don’t know if I can tell you about it.
1/23/19 – Teresa passed away. Every sarcoma surgeon refused to help for various, useless reasons. Maybe they lied about their reasons. If they did, they should have been honest because we would have stopped wasting time going to more and more doctors trying desperately to save her, and done more of the trips we dreamed about. Her time in the hospital was generally miserable, much of it caused by the hospital; miscommunication, deciding she had no hope right from the start — they sent hospice to us on 11/15/18. No matter how many times Teresa or we said NO, hospice wouldn’t stop coming — and charging nearly $500/visit.
Everyone told us she needed a sarcoma specialist, but they were completely and utterly useless. I wish we had just found a good general surgeon again. Even when her regrowing tumor was small, the sarcoma surgeons just pushed chemo. No chemo ever worked; not even chemo targeted to her tumor based on Foundation Medicine testing.
I have lost my soulmate. I am devastated. I don’t know how to go on without her. I am overwhelmed. Eating makes me feel ill. I have no appetite. I don’t want to be without her. I would give anything to have her back. No one ever understood me the way Teresa did. How can I ever be happy again without her? My true love. My soulmate. My world. Always Forever. And Ever. – Amanda Grabler
Last updated 27 January 2019