Notes Regarding Molly’s Treatment for Multiple Myeloma (Fall, 2017)

My Molly Notes

During Molly’s battle with cancer in 2017, I made a number of notes regarding her diagnosis, medical treatments, and ancillary matters. I was also sending updates to a number of her loved ones. Below are my notes and correspondence. I thought I would preserve them on my website for posterity’s sake.

MEMO TO CHRIS BURLEIGH

Monday, October 9, 2017

Dear Chris,

I want to apologize if I seemed out of sorts Friday evening when your mom and I stopped by. As you probably know, I don’t handle stress, especially emotional stress, very well. The day had been very long and emotionally upsetting. Please forgive me if I seemed out of sorts.

I am writing to give you a more detailed account of what happened at MD Anderson last Friday. One of the reasons I wanted to be with Molly, was so that we, as family, would have a clearer understanding on what is going on with her health. Saturday morning, I sent the following message to several family members who had asked to be “in the loop” (Jennifer, Gracie, Angie, Pat Danko, Lori Burleigh):

I wanted to update you on my sister’s health. Friday afternoon (October 6, 2017), I accompanied Molly to her appointment at M.D. Anderson. As you may recall, she was referred to M.D. Anderson several months ago, after abnormal bloodwork surfaced when she had her mastectomy. Initially, Dr. Lee, after two days of testing, diagnosed her with “Smoldering Myeloma”, but did not recommend any treatment. They made an appointment for late August for him to check on her. Unfortunately, that appointment had to be cancelled due to Hurricane Harvey, and Friday afternoon was the soonest the appointment could be rescheduled. Due to a ten-fold increase in marker cells (he described as “light chain”), Dr. Lee has changed his diagnosis to “Overt Multiple Myeloma”, and outlined a recommended course of treatment that includes chemotherapy and stem cell transplants of bone marrow. While he said a cure for Multiple Myeloma “remains elusive”, he seemed confident that Molly will respond favorably to the course of treatment he outlined. He is scheduling more tests for late next week, as well as a consult with the stem cell specialists. After these tests, he will begin the frontline chemotherapy as soon as possible. If she is a candidate for the stem cell transplant, that will take place several months down the road, after the initial cycles of chemotherapy. Fortunately, the side effects of the first few months are not expected to be too debilitating, and she will be able to take them in Beaumont. In typical Molly fashion, she received this news calmly, and with strength and grace. In her words, she told me “I will fight this thing as best I can, but whatever happens, I am okay with it”. Please keep her in your thoughts and prayers. I am sure she would be most happy to receive an encouraging phone call.

I want to provide you with a more detailed account of her appointment with Dr. Lee, as follows:

Lab Work: Upon arrival at M. D. Anderson, we went to the lab and they drew several vials of blood to be tested prior to the appointment with Dr. Lee. After finishing at the Lab (located on the 10^th floor, Elevator Bank B), we proceeded to Dr. Lee’s office where we checked in and waited about two hours (Dr. Lee’s office is on the 6^th floor, in an area designated “Lymphoma and Myeloma”).
Dr. Lee’s Nurse: When we got called back, Dr. Lee’s nurse examined your mom and asked her some routine questions regarding her health and how she felt. She also went over mundane parts of the results of the blood work from the lab…all of the ones she discussed were ok, or within normal ranges.
Dr. Lee: He came in shortly after the nurse and got right to the point, as follows:

History: He briefly went over your mom’s history- that when he first saw her and the results of testing he had done, his diagnosis was “Smoldering Myeloma”. He had seen markers in her blood that were consistent with Myeloma, but they were not present in sufficient numbers to warrant treatment. [Note- I did not think to ask him why he did not start treatment right away, but it might be explained by the following statement, which I found on the American Cancer Association website: “Early myeloma includes smoldering myeloma and stage I disease. Patients with early myeloma can do well for years without treatment. For many patients, starting treatment early does not seem to help them live longer.”]

Current Test Results: Dr. Lee reported that (a) her “light chain numbers” were way up- one marker went from 500 to 6,802 (he noted that when this marker is over 10,000 it can cause kidney damage) and the other marker went from 41 to 680; Dr. Lee described these changes as a “ten fold increase in the last several months; and (b) that your mom was more enemic than before, suggesting that more Myeloma cells were present. Based on these results, Dr. Lee stated he was changing her diagnosis to “Overt Multiple Myeloma” and was recommending treatment, as described below.

Recommended Treatment for Multiple Myeloma:

Dr. Lee is recommending a treatment plan that consists of 3 main steps:

Frontline Chemotherapy

Dr. Lee said that although a cure for Meyloma “remains elusive”, the good news is that there has been lots of progress in treating the disease in the last 15 years and that the treatment regimens in use today have been shown to be “very effective”, with “100% response rates”. The most common chemotherapy involves using a 3 drug regimen, as follows (Caveat: I am not 100% on the spelling of these drugs, but should be close): Velcade, Revlimid, and Dexamethicin. Dr. Lee said he was a little concerned about using Velcade on Molly, since the primary side effect (increase in neuropathy) is experienced by about 30% of patients. To deal with this, he is going to try to get your mom’s insurance company to allow him to use Xasimid, which is a newer drug without the neuropathy side effect. He also discussed the possibility of using Casfilsamid in place of Velcade. While it reduces the neuropathy side effect, he said your mom might not be a good candidate because of cardiac risk. Based on everything he said, there are a couple of bright spots relating to the frontline chemo therapy. First, the chemo can be administered in Beaumont and only one of the three drugs is intravenous, the other two are pills. Second, the side effects don’t seem too bad, along with the increase in neuropathy, he mentioned fatigue, diarrhea, rashes, weight gain, and insomnia as possible side effects. He does not expect her to lose her hair during this phase of treatment.

Stem Cell Transplant Therapy

Dr. Lee said that assuming 3 to 4 cycles (months) of the above chemo therapy “reduces her protein cells dramatically”, he would then propose stem cell transplant therapy. He would hospitalize Molly and administer a high dose of chemotherapy, followed by the transplantation of blood-producing stem cells to replace healthy cells damaged by the chemotherapy. A couple of things to note in this regard. Since the stem cells need to be collected before Molly begins chemotherapy, Dr. Lee is scheduling a consult with the stem cell team for later this week. They will also do a bone marrow biopsy (under sedation), as well as a full body scan and a bone survey by a radiologist. I will be coming back over to take Molly to these appointments/procedures. The other thing Dr. Lee mentioned was that Molly would probably lose her hair from the chemotherapy administered at this phase of treatment. He also said that should the stem cell team determine she is not a candidate for the stem cell therapy (he did not explain the factors that might disqualify her), he would increase the chemotherapy to 8 cycles before beginning maintenance therapy.

Maintenance Therapy

Dr. Lee did not go into much detail on this, except to say that it would consist of one drug only, probably Revarlon.

In conclusion, Dr. Lee seemed very competent and caring. He also seemed confident that he would be able to fashion and administer a treatment plan that will allow Molly to control her Myeloma so that it does not damage her kidneys or cause other damage that would significantly shorten her life.

After Dr. Lee left the room, we were joined by a social worker (named Lindsay) who began by discussing some resources available to patients that had been displaced by the hurricane. She gave Molly some written materials on a number of organizations, but recommended that, at a minimum, she contact CancerCare and the Luekemia/Lymphoma Society and ask for financial help. She also explained that Dr. Lee’s normal social worker was Kendalyn Shankle (tel. no. 713.794.1151) but that she was off the day we were there but Molly or family could call either of them at any time with questions, etc.

Lindsay then spent a little time asking Molly about her emotions and feelings relating to Dr. Lee’s changed diagnosis. Molly broke down and had a good cry, admitting that she was “scared and afraid” of what lies ahead. My impression was that this was a good thing for Molly to let these emotions out. She told me that she was going to fight this thing to the best of her ability and let the chips fall wherever God intended.

The purpose of this note is to try, to the best of my ability, to convey what happened at M. D. Anderson last Friday. At the end of the day, while emotionally shaken, I was hopeful…buoyed by the competent and loving care Molly is receiving at M.D. Anderson, and strengthened by Molly’s resolve and calm acceptance of this situation.

As I said, I will be with Molly (hopefully later this week) during the further consultation and testing Dr. Lee is scheduling, and I will let you know the outcomes, as best I can. Please call if you have any questions, or if there is anything else I can do, or should be doing, to help Molly and the family. I love you all. Tom McC

TEXT OF UPDATE RE MOLLY’S DIAGNOSIS

RECAP OF MOLLY’S TESTS 10-11 THRU 10-13

Monday, October 16, 2017

Re: M.D. Anderson visit, October 11, 12, 13^th, 2017

Last week I accompanied Molly to M.D. Anderson and took her appointments set up by her primary doctor (Dr. Han Lee) over a period of 3 days, as follows:

Day One: Wednesday, October 11

We arrived just in time for Molly’s first appointment at 10:00 a.m. I won’t bore you with the confusing details*, but we managed to make it to all of her scheduled appointments, finishing up at 8:40 p.m. It was a long and exhausting day- Molly completed the following appointments:

– XRay Bone Survey, Complete

– XRay Spine Cervical Series

– Blood/Speciman Collection, Lab

– Electrocardiogram (EKG)

– Consultation with Dentist (Dr. Aponte-Wesson), with dental xrays

-.Complete PFT (Pulmonary Function Testing)

– PET CT Complete Body Imaging (Nuclear Medicine Imaging Center

Of special note was the appointment with the Dentist. Because chemotherapy can make dental extractions very difficult (high probability of bone rot), MD Anderson requires patients to see one of their dentists- in other words Molly was sent for dental clearance prior to beginning her chemotherapy. After x-rays and a dental exam, Dr. Aponte-Wesson said there was a concern about decay on one tooth (distal, #31). She said that Molly could see if her personal dentist could repair the tooth, but that she would recommend “that a root canal be performed then the tooth cut off at the gum line”. Dr. Aponte-Wesson also prescribed a special tooth paste for Molly to use two times daily while undergoing chemo. Molly said she would contact her dentist in Orange and try to get an appointment early next week. Friday, while waiting for the stem cell appointment, I asked Molly if she wanted to try to call her dentist to set up an appointment. She told me that she had called him the day before and had been told that they were flooded and their office was not operational at this time. Molly said, “I guess I will have the MD Anderson dentist do the work”. I asked if she wanted me to call and try to make her an appointment with Dr. Aponte-Wesson, and she said yes. I called and the person who does the scheduling (Mary Gail, 713 792-6510) was not in, so I left her a voice mail explaining that Molly wanted to try to set up an appointment, and gave her Molly’s cell # and asked her to call Molly. Since is was fairly late on a Friday afternoon, I anticipated that Mary Gail would call Molly back the following Monday.

[ * – Before leaving my home Tuesday afternoon, I printed out Molly’s three day schedule from the M.D. Anderson website. When we got to the hospital, Molly said “they called and added a couple of things…an EKG and PFT. I went online and these items were not reflected on the schedule, so I called the person that Molly said told her the items had been added (Patty, at 713 792-6133). I explained to Patty that I was confused, because Molly said an EKG and PFT were added to the schedule, but they were not in the online schedule and I had no idea what time and what location these items were scheduled for. Patty went on line and said “You are right…I will add them on…by the way, were are the Labs??” I said they did not appear on the schedule I printed out, so she said “I need to add a lab appointment too, they can’t do the biopsy tomorrow without the labs”. Bottom line it was very confusing and messed up, but somehow we managed to get everything done. This whole scheduling thing has me concerned about Molly’s ability to understand and/or remember matters such as this. When I dropped her off the previous Friday (October 6) I stressed to her that she needed to call Dr. Lee’s scheduler Monday morning to find out when her appointments were, and that she needed to let me know the schedule as soon as possible so I could arrange to get to Orange to take her. I didn’t hear from Molly, so about 4:30 Monday afternoon I called her, and she said “I have one appointment for Friday afternoon at 1:30”. I said what about the other appointments? Molly said, “They (stem cell folks) are the only ones who have called me….the others are supposed to call me and they haven’t”. I reminded her that that was not the case, that she was supposed to call Dr. Lee’s scheduler on Monday. I asked her to call the scheduler first thing Tuesday morning and let me know. I didn’t hear from Molly Tuesday morning, so about 12:30 I called her, and she said “I talked to them this morning and my first appointment is tomorrow at 10:00 a.m.” Bottom line, I am very concerned that Molly may not be able to take care of these matters by herself anymore. She seemed oblivious to the fact that I had to make a five hour drive to Orange without almost any advance warning. As I write this memo, (Monday, Oct. 16) I have not heard from her, although she had promised to call me to discuss the housing issue. Also, I have no idea if she followed up on the dental appointment.]

Day Two: Thursday, October 12, 2017

We arrived at the “Out of OR Anesthesia Center” at 6:45 am for a scheduled bone marrow biopsy. Molly came out from under the anesthesia around 9 a.m. and they allowed us to leave at 10:00 a.m. We proceeded to the pharmacy and picked up the Rx tootpaste Dr. Aponte-Wesson had prescribed. We then went to Dr. Lee’s office- when looking at the online schedule, I had noticed that there was a lab appointment scheduled for Wed. December 13, then an appointment with Dr. Lee on Friday Dec. 15 at 1:30 p.m. I was concerned that Molly would have to make two trips. After waiting a while, we got to see Dr. Lee’s nurse- I explained my concern and she rescheduled the lab for 10 a.m. on Friday Dec. 15…ie, only one trip will be required. I also asked her about the results of the previous days tests- how would they be communicated to Molly? She said that Dr. Lee would call her with the results. We left the hospital around noon and stopped at Luby’s for lunch. It was good that we had no more appointments that afternoon so Molly could get some much needed rest.

Day Three: Friday, October 13, 2017

All three of our appointments were at the Stem Cell Transplantation Center, as follows:

Consultation with Dr. Q (Muzaffar Qazilbash, MD), who advised as follows:

– right now, he does nothing, until Dr. Lee has completed the frontline chemotherapy

– once that is completed, Dr. Q will do some tests on her liver and heart to make sure that Molly can withstand the very large chemo dose he will give her in the hospital as part of his treatment– the Stem Cell Transplantation process TAKES TWO MONTHS, THREE WEEKS OF WHICH MOLLY WILL BE IN THE HOSPITAL– the FIRST STAGE of the process is collection of stem cells…Molly will be an out patient- they will give her injections of a drug several days in a row…this drug brings the stem cells out of the bone marrow into the blood stream (where they can be collected). The collection will take place over 3 to five days (about four hours per day), until they have enough collected to use during the transplant. They will have outfitted Molly with a “mainline catheter” that will be used for administering drugs and collecting the stem cells…it will stay in throughout the whole transplant process. Side effects of this stage are flu like symptons.

– the SECOND STAGE of the process will begin with Molly being admitted to the hospital. They will give her a massive dose of chemotherapy that will kill all Myeloma cells.

– the FINAL STAGE will take place about 48 hours after the chemo dose- they will reintroduce the collected stem cells. The side effects of the second and third stages are: nausea, fatigue, hair loss, poor appetite, risk of infection. The first week of hospitalization will entail the chemo and the reintroduction of stem cells. They will keep her about two more weeks as she gradually starts to feel better.

Dr. Q said they do about 850 stem cell transplants a year at M.D. Anderson, 250 of which are to treat Multiple Myeloma. He said that 99% of the patients recover, and “in this day and age, the average life expectancy for a Myeloma patient after stem cell transplant is 10 years and improving”. He said the stem cell treatment turns it from a fatal disease to a chronic disease that can be treated with medicine (like diabetes or arthritis).

Consultation with Jennifer Pena, Transplant Coordinator

Jennifer will be Molly’s main point of contact- she gave Molly her direct number (713.745.8910). Here are the things she discussed/emphasized with Molly:

– Molly will need to be in Houston for 60 days

– the first three weeks will be outpatient, followed by 3 weeks in the hospital

– she will be discharged to local housing for a minimum weeks…a CAREGIVER IS VITAL DURING THIS TIME, to keep “eyes on”, helping with medicine, food, etc.; after two weeks will be discharged to home

-there will be a window of a few days prior to the hospital stay where Molly could return home for a few days (first 2 weeks she will be required to go to hospital almost daily)

– she will need a caregiver for the entire 60 days, especially the two weeks after she is discharged to local housing.

– IT IS IMPORTANT TO GET HOUSING INFO FROM ERIC TIDLINE AND TO MAKE CALLS EARLY FOR LOCAL HOUSING. Jennifer said to give them an initial date of 2 months out…this date will be variable, but it is imperative that she SECURE A SLOT ON AT LEAST TWO WAITING LISTS.

– she said the first week in the hospital is the toughest, in the 2^nd and third weeks, the transplanted cells are doing their work and the side effects begin to fall way.

– after she is discharged to home, she will be required to come back to the hospital after a month, then every three months for the first year.

Consultation with Financial Person

This was a brief appointment- she stated that since Molly had Medicare and a supplemental policy, everything should be covered

———————————-

THINGS MOLLY NEEDS TO DO IN PREPARATION FOR BEGINNING OF TREATMENT:

MAKE AN APPOINTMENT WITH THE M.D. ANDERSON DENTAL TEAM AND GET HER TOOTH FIXED

GET ON AT LEAST TWO WAITING LISTS FOR HOUSING

DISCUSS WITH DR. LEE THE TEST RESULTS AND TIMELINE FOR BEGINNING OF TREATMENT

MEMO I SENT REGARDING EFFORT TO GET HOUSING

October 18, 2017

Re: Housing for Molly (& Caretaker During Stem Cell Transplant Therapy

I am writing to update you on my efforts to address the above topic, as follows:

During our meeting with Jessica Pena (Dr. Q’s Transplant Coordinator), she emphasized that we should

Get housing info from Eric Tidline as soon as possible, since Molly and a caretaker will need housing for 60 days during her treatment (3 weeks of which will be in the hospital, but caretaker will still need a place to stay).

Get on at least two waiting lists as soon as possible, giving them an initial date of two months out. Jessica emphasized that it was imperative to get on at least two waiting lists as soon as possible.

..I called Eric Tidline that afternoon and he said he would email me the housing lists that day. When I got back to McQueeney on Saturday, October 19, I checked and he had emailed me three lists, each about 12 pages long. I had asked Eric to also send the lists to Chris Burliegh, so I texted Chris and asked him to print them out for Molly, which he did. Upon initial review, it was apparent that two of the list would be motels and apartments that, while being offered at reduced rates, would still be very expensive over the course of 60 days (for example: at $79 a night, total cost for 60 days would be $4,740).

Consulting with Molly, I picked the two best options and secured a spot for her on their waiting lists as follows:

► HOSPITALITY APARTMENTS, 7300 Bertner (.7 miles), 713 790-9120

-Molly and I did a threeway call and spoke to a volunteer named Tommie Barker. She took down our information and placed us on their waiting list.

-our wait list Card # is 17-957 and she said we need to call every 30 days to stay on the wait list; I marked my calendar for Nov., Dec., Jan, and Feb. with a note to call.

-the only charge for this housing is a $100 cleaning fee. Each apartment includes twin beds, a sofa bed, a kitchen, private bath and TV. A shuttle runs every 30 minutes.

► HALO HOUSE FOUNDATION, 8181 Fannin (1.4 miles) 713 665-8852

– we applied online at www.halohousefoundation.org. On Tuesday, Oct. 17, a volunteer from Halo House emailed me and confirmed that they received Molly’s application and that she was on the waiting list. The email asked that we call them to verify our contact numbers, which I did on 10-18, speaking to Jessica. Although they did not say we needed to call to stay on the list, I will call them each month when I call Hospitality.

– this place charges $20 per day with a one-time cleaning fee of $75, and a security deposit of $100.

-each apartment has one bedroom with two single beds, living room, kitchen/dining area, television with basic cable, and is for active treatment patients for leukemia, lymphoma, myeloma and stem cell transplant patients only

MOLLY CARE LOG

Friday, October 6, 2017

Took Molly to MD Anderson for consultation with Dr. Lee. He changed diagnosis from “smoldering Myeloma” to “Acute Multiple Myeloma” and outlined a treatment regimen consisting of frontline chemo therapy and stem cell transplant therapy. Said he would be ordering tests and would set up a consultation with stem cell team. (see separate memo for details)

Wednesday thru Friday, October 11-13, 2017

Took Molly to MD Anderson for the tests, procedures and consultations set up by Dr. Lee. Most significant events: Consultation with stem cell transplant specialist (Dr. Q), bone marrow biopsy, full body scan, meeting with dentist. (see separate memo for details).

Monday October 16 and Tuesday October 17^th (Housing)

Worked on housing, got Molly on two waiting lists (Hospitality Apartments and Halo House Foundation). (see separate memo for details)

Tuesday, October 17, 2017

Molly had advised that since her dentist was unable to do the work on her tooth, she had decided to have it done at MD Anderson (Dr. Aponte-Wesson) and had made an appointment for 11:30 a.m. on Friday October 20 to have the work done.

Saturday, October 18, 2017

Called Molly to find out how the dentist procedure went. She said “I am mad at them, I made a trip for nothing. When I got there, they said ‘what are you doing here’?”. She stated that she would find someone local to do the work on her tooth.

Monday, October 23, 2017

Got a call from Martha Watson Cole, she was crying, very upset and concerned about Molly. She said Molly had called her that afternoon from Beaumont, was sitting in her car in front of the doctor’s office, too tired to drive home. She said Edith Ann had been trying to call me and that she was very concerned also.
Called Edith Ann (936.201.6260); she is very concerned about Molly, related the following:

– a week ago, Molly fell again, laid there until Edith got home from work

– Molly is not eating well

– Molly seems weaker by the day and more and more disoriented

– unable to get out of a chair by herself or off the toilet at times

– “She can stay here, but she needs someone to look after her while I am at work”

– Megan and Chris came by Sunday the 15^th, she told them she would have a key made

I told Edith Ann I would do what I could. Called Chris, he and Megan are going to visit Molly on Tuesday and will discuss the possibility of her moving in with them (he needs to build a ramp and get her an assist chair). Chris agreed to call me after meeting with Molly.

Tuesday, October 24, 2017

Logged on to the MD Anderson Portal and found that all test results appear to be in. Also noticed that Molly had four new appointments (Cardiologist and Gastro related) for this Friday, October 27, with the first being at 8:00 a.m.

I called Molly- she was unaware of the Friday appointments, and said she had not heard from anyone from MD Anderson about the appointments or from Dr. Lee regarding the test results and time frame for beginning treatment. I asked her if it was ok to call Dr. Lee’s office and try to find out what was going on. She also said, “I wonder if I should go tomorrow for my stress test…I have a stress test scheduled for tomorrow with Dr. Hernandez, my cardiologist in Beaumont” (Note…I found out later, when I asked Molly to give me every non MD Anderson appointment she currently has scheduled, that this was incorrect. She has a mammogram scheduled for tomorrow, not a stress test. Another example of her confusion and inability to keep her schedule straight. See notes below regarding scheduling of dentist appointment.) I asked her if she knew if her Beaumont Cardiologist was coordinating with the MD Anderson people and she said she did not know. I told her I would try to find out from either Dr. Lee, or Dr. Yusuf, the cardiologist she is scheduled to see on Friday at 9:20 a.m.

Called Dr. Yusuf’s office and left a message with his nurse’s voice mail. (His nurse called me back around 2:30 pm and I explained to her that my sister mistakenly thought she had a stress test tomorrow and that she did not; we would discuss it with D. Yusuf on Friday).
Called Dr. Lee’s office and spoke to Jennifer, she was able to tell me that the appointments for Friday were ordered by Dr. Q, not by Dr. Lee. She could not tell me anything about test results or time frame for beginning of chemo and suggested I speak to Athena, his nurse. She put me through to Athena and I got her a voice mail, briefly explaining why I was calling and asking her to call me back. I also sent Dr. Lee the following message on the patient portal:

Tuesday, October 24, 2017 (9:45 am)

RE: Patient Molly Burleigh, MRN #2132991

Dear Dr. Lee,

I accompanied my sister to her visit with you on Oct. 6, 2017 and then to a myriad of tests, procedures, and consultations that you set up on October 11- 13, 2017. I am very worried about my sister- her health is deteriorating rapidly. She is very weak, and I am beginning to be concerned that she will not have the strength to endure the treatment regimen you outlined on our October 6 visit.

Have you had a chance to review the test results and consult with the stem cell team? Is my sister still a candidate for stem cell therapy (I notice that Doctor Qazilbash has several more appointments set up for her this coming Friday)? Do we have a time frame for when the frontline chemo therapy will begin?

I thank you in advance for your kind attention to these requests.

Sincerely,

Tom McCoppin

Brother and Primary Family Care Giver for Molly Burleigh

281.650.0785 cell

830.557.6757 home

I called Molly back and told her that I was waiting to hear back from Dr. Lee and Dr. Yusuf’s nurses. I told her I would drive over Thursday and take her to Houston (made reservations at Comfort Inn on McNee in the Medical Center for Thursday night) for her appointments on Friday. I asked her if she had made a dentist appointment yet and she said she had not…”she had forgotten about it”; but, she said she had three names of dentists in Beaumont that might be able to do her root canal. I asked her if she wanted me to try to set up an appointment with one of them and she said she would appreciate that. I asked her to tell me of all pending appointments she has at the present time, so that I didn’t schedule the dental procedure on a day that she already had an appointment. Molly said she currently has these appointments scheduled (currently scheduled MD Anderson Appointments in italics):

▪ October 25, 2017: Mamogram in Beaumont (she has a ride)

▪ October 27, 2017 Friday, following appointments at MD Anderson:

– Echocardiogram at 8:00 a.m.

-Consult with Dr. Yusuf (Cardiologist) at 9:20 a.m.

-Consult with Dr. Ethan Miller (Gastrointestinal Center) at 10:30 a.m.

-Blood/Specimen Collection with Main Endo Fuji CR Reader

▪ October 30, 2017, Monday; 10:00 a.m. appt. with Dr. Tatibanbla 409.813.1686 Oncologist, “Dr. Tat”

▪ November 6^th, Monday; Dr. Goodman, Rheumatologist (need time)

▪ November 10, 1017 Friday

-2:30 p.m. follow up with Dr. Qazilbash, Stem Cell Transplant

▪ November 14, 2017 Tuesday, Dr. Jorge Hernandez, 409.892.1192

-stress test scheduled for 10:00 am

▪ December 15, 2017 Friday

-10:00 a.m. Main Lab

-1:30 p.m. Follow up with Dr. Hans Lee

[It was during this conversation that I/Molly figured out she was confused about having a stress test this Wednesday. It is a mammogram on Wednesday and the stress test is scheduled for November 14^th].

Molly gave me the names and phone numbers of three dentists that had been recommended to her, as follows:

▪Dr. Katherine Olson, 409.866.4600

▪Dr. Jeansonne Michael, 409.892.6026

▪Dr. Dave Carpenter, 409.898.4300

I called Dr. Olson’s office and spoke to Danette. I explained our situation as best I could, and she seemed to think Dr. Trista (Olson is maiden name) could help. She said that they specialize in root canals, and have treated many chemo patients in their practice. She also stated that Dr. Trista was good about working people in. She asked for the name and phone number of the dentist at MD Anderson. She said Dr. Trista was in a procedure right now but would talk to her and call me in a couple of hours. She called back later and said that she had contacted Dr. Aponte-Wesson’s office and they refused to give her any information- that Molly had not signed a consent to release information. She asked that I email her my narrative, which I did. I checked Molly’s patient portal and found no reports from Aponte-Wesson, intending to include them in my email. (I called Mary Gail Mejia at Dr. Aponte-Wesson’s office, 713.792.6510, but she did not answer)

I was finally able to find notes in the Patient Portal from the visits to Dr. Aponte-Wesson on Oct. 11 and Oct. 20. Using the print screen/paint function I was able to send 4 pages of records from each visit to Dannette of Dr. Triska’s office. I called her at 5 p.m. to touch base and to confirm which days and times Molly would be available for an appointment. She said she would call me before noon tomorrow (Wednesday the 25^th).

Athena from Dr. Lee’s Office called me back at 4:45 p.m. I explained my concerns, to wit:

-we hadn’t heard from Dr. Lee regarding test results or timeline for starting chemo

-my concern about Molly’s deteriorating health and increasing weakness.

She said Dr. Lee was out of town last week, but she will pass on my request that he call. I asked that he call my cell and I will put Molly on for a three way call. She said it was important that Molly eat as much as she could, and that she not “just lay in bed and sleep all day…that will only make it worse”. Encourage her to sit up and walk around as much is as safely possible.

Called Chris about 3:00 p.m. He said they met with Molly and she wants to think about it for a “couple of days” (ie his proposal that she live with them). He said that the was unable to find the card and x-ray that Dr. Aponte-Wesson gave to her (I had asked him to get it and possibly drop it by Dr. Triska’s office on Wednesday).

October 25, 2017, Wednesday

Dannette from Dr. Triska’s office called. Dr. Triska has agreed to consult and treat Molly’s tooth in one sitting- we have an appointment for 8:00 a.m. Friday, November 3, 2017. She asked that while we are at MD Anderson this Friday, that we get a medical clearance for the root canal procedure. They have already sent requests to Dr. Lee, Dr. Qualibash, Dr. Aponte Wesson and Dr. Tat. I told her I would work on that. Also asked her for a ball park price for the work they are going to do on Molly. Directions to their office at 1525 Cornerstone Court: College St. Exit to Major Drive; Right on Major, left on Gladys, dead ends into Cornerstone Court.

Received email from Dr. Triska with medical clearance form and estimated cost of $1435, extra $91 for nitrous oxide. About this same time I received a call back from Jessica Pena. We discussed the problems I have had and she said if I would send her the clearance form, she would assist me in getting someone to fill it in and sign it. I called Dannette and went over the form, filling in what I could with her assistance. I then emailed the PDF form to Jessica Pena and asked her to fax the completed form to Dr. Triska and to provide me with an executed copy for our records (see email trail). Jessica also advised she would be cancelling the November 10^th appointment with Dr. Q, it will be rescheduled to a later time after the commencement of chemotherapy.

While I was on the phone with Jessica Pena, I missed a call from Rebecca, Dr. Lee’s Nurse Practitioner. She left me a message, saying that she was calling to respond to my inquiry to Dr. Lee about test result and time frame for chemotherapy. I won’t bore you with the sordid details, but I finally was able to speak to Rebecca, who related the following:

▪Dr. Lee has spoken to Dr. Patibandla regarding Molly’s test results and treatment

▪Dr. Patibandla will be managing Molly’s chemo treatment and any questions relating to test results and timeframe for chemo should be addressed to her

▪The medical clearance form for the dentist should be signed by Dr. Patibandla, since she is in charge of the chemotherapy

(I told Rebecca that we had an appointment with Dr. Patibandla on Monday, Oct. 30^th and that I would ask my questions of her. I said “so she will be able to tell me the results of the full body PET scan?” at which time Rebecca said “I can discuss the results of any of the tests we ordered. at which point she related the following:

▪ the Pet scan showed a relatively stable situation, “nothing acute”

▪ the skeletal survey showed splenomegaly, or enlargement of the spleen, and liver

▪ nothing in any of the tests should prevent the commencement of chemotherapy

▪ chemotherapy needs to begin as soon as possible, under the direction of Dr. Patibandla

Sent an email to Jessica Pena advising her that Dr. Patibandla is the one who needs to sign the medical clearance form for Dr. Triska. Printed out the form, filling in Dr. Patibandla’s name.
Began working on a memo to update Chris, et al. Before I was finished, Molly called and we went over the logistics of the Friday Appointments and the Monday appointment with Dr. Tatibandla. At one point in the conversation she said “Dr. Tati’s nurse called me a little while ago and I am a little confused about the pills”. I said what pills, and she said “the Chemo pills”.

I said when did you get chemo pills and she was unsure but stated “I still have two others, that I forgot to pick up in Beaumont today”. I told Molly not to take any pills until I had a chance to talk to Dr. Tatibandla’s office. She said talk to Debbie, she is the one that called me.

Called Dr. Tatibandla’s office and asked for Debbie, when she came on, I introduced myself and explained that I was trying to help Molly navigate through this process. I explained that I was with Molly on Oct. 6 when the diagnosis was changed and when Dr. Lee outlined the proposed treatment. I explained I was with her during the three days of tests and specifically talked about the problems with the dental work. Debbie said they knew nothing about the need for any dental work prior to treatment. I further explained that I had gotten Molly an appointment for Friday 11-3 to have the tooth fixed that Dr. Aponte-Wesson said had to be fixed before chemo started. I told Debbie of the call I received from Dr. Lee’s nurse today wherein she stated that from now on Dr. Tatibandla was in charge of the chemo treatment and all questions should be directed to her. Debbie advised that MOLLY SHOULD NOT TAKE ANY CHEMO PILLS UNTIL AFTER THE MONDAY APPOINTMENT.
Called Molly back and stressed that she should not take any chemo pills until we meet with Dr. Tatibandla on Monday. Suggested she not even take them out of the stapled bag and mark on the bag with magic marker “DO NOT TAKE”.

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CARE PROVIDER LOG:

MD Anderson Doctors, Nurses, Social Workers, Etc.:

Dr. Hans Lee, Lymphoma and Myeloma Center, 713.792.3510

▪ his nurse is Athena

▪ nurse practitioner is Rebecca

▪ assigned Social Worker is Kendalyn Shankle 713.794.1151 (saw Lindsay on 11-6-17)

Dr. Muzaffar Qazilbash, Stem Cell Transplant Center,

▪ Jessica Pena, Coordinator; 713.745.8910 jeremmen@mdanderson.org

▪ physician’s assistant is Jessica Chen (Jackie Uye??)

Beaumont Oncologist who will be managing Molly’s frontline chemo:

Sumalatha Patibandla, M.D. Molly calls her Dr. Pati

3070 College St # 301, Beaumont, TX 77701

(409) 813-1686; Debbie is nurse to call for info, etc.

Dentists:

Dr. Aponte-Wesson, MD Anderson; 713.792.6510

▪ Meridel Mejia, scheduler, 713.792.6510

Dr. Katherine Olson Triska,

1525 Cornerstone Court, Beaumont 77706 409.866.4600; Fax 866-4607

▪ Dannette 409.866.4608; 1525 Cornerstone Court

Housing (during stem cell transplant therapy):

▪ Hospitality Apartments, 7300 Bertner; 713 790-9120

Wait list Card #17-957; need to call each month to stay on list

▪Halo House Foundation, 8181 Fannin; 713 665-8852 applied online, on waiting list as verified by confirming email on 10-17

-probably a good idea to check in with them each month also

APPOINTMENTS CURRENTLY SCHEDULED:

▪ October 25, 2017: Mamogram in Beaumont (she has a ride)

▪ October 27, 2017 Friday, following appointments at MD Anderson:

– Echocardiogram at 8:00 a.m.

-Consult with Dr. Yusuf (Cardiologist) at 9:20 a.m.

-Consult with Dr. Ethan Miller (Gastrointestinal Center) at 10:30 a.m.

-Blood/Specimen Collection with Main Endo Fuji CR Reader

▪ October 30, 2017, Monday; 10:00 a.m. appt. with Dr. Patibandla 409.813.1686 Oncologist, “Dr. Pati”

▪ November 3, 2017 Friday; 8:00 a.m. appt. with Dr. Triska (Root Canal)

▪ November 6^th, Monday; Dr. Goodman, Rheumatologist (need time)

▪ November 10, 1017 Friday

-2:30 p.m. follow up with Dr. Qazilbash, Stem Cell Transplant

(Note: on 10-24, Jessica Pena said she was going to cancel this appt)

▪ November 14, 2017 Tuesday, Dr. Jorge Hernandez, 409.892.1192

-stress test scheduled for 10:00 am

(Note: will discuss with MD Anderson Cardiology on 10-27)

▪ December 15, 2017 Friday

-10:00 a.m. Main Lab

-1:30 p.m. Follow up with Dr. Hans Lee

NOTES FROM EULOGY I DELIVERED AT MOLLY’S FUNERAL

On behalf of my sister, and our family, I want to thank each and every one of you for being here today; your presence honors and comforts us, and we sincerely appreciate you being here. We are humbled, and so appreciate, that some of you traveled great distances at great expense to be here today…Thank You

I want to thank Pastor Mike, and the First Presbyterian Church. Mike, you were more than a pastor to my sister, you were a compassionate friend. Toward the end, Chris and I wanted someone outside the family, but someone Molly loved and respected, to meet with her, to make sure the path she was on was the one of her choosing, and we called on you. Thank you Mike for your unselfish love and wise counsel. And the church you serve, and the people of that church, were such a big part of our lives…it gave us our spiritual and moral foundation, shaped our understanding of god, and provided us with fellowship and friends, throughout our lives. Thank you.

I also want to thank the medical professionals who did their best to help Molly. Especially the fine folks at Harbor Hospice in Beaumont.

And thank you Johnny, Chris, and Jeremy, for allowing me the honor of speaking here today.

Molly Mountjoy McCoppin Burleigh, was like a good book, the one you never want to put down, the one you never want to finish. That is the paradox before us today…to celebrate and remember the good that was Molly, yet close that wonderful book of her life on this earth one final time.

As people around these parts know me as Tommy, they know my sister as Molly Joy. What an appropriate name. Molly’s childhood was typical of life in a small Texas town in the 1950s and 60s — Sunday’s at church, with a roast for Sunday lunch, girl scouts, little league, the Lions Club Carnival, hot summer days, simple family vacations and a new dress each Easter. Molly was an excellent big sister. She blazed the trail for Ray and I — first at Anderson, then Carr, then Stark. And while she was perfect in almost all respects, I must admit she did gloat a little, that she got her own room, that she got to drive before us, and that she was afforded the privilege of placing that ugly yellow flower on the antenna of the car we shared. There were some rough times growing up- when mental illness stuck its ugly nose under our family tent and took our mother away for long periods of time, Molly stepped up, and did her best for her two little brothers and our father. We were blessed to have a big sister like you Molly Joy. I will always remember you as that cute, skinny little thing that was always smiling.

As Molly struck out to build her life, marrying John, and raising three sons, we watched as she grew into a loving wife and mother. Later, we watched as she took on the role of doting grandmother. For Molly Joy, family and friends were everything, as it should be.

Molly Joy was very good at many things:

-she was a very good cook, many will miss her gumbo, her home cooked meals

-she was very good at making her home a welcoming place…how many of us enjoyed the 4^th of July get togethers that she and John hosted for many years

-she was very very good at growing things

-she was so good at being kind

-she was very good at forgiving others

-she was very good at never complaining

-she was very good about never saying unkind things about others

-she was very good at being a friend. If you take the measure of one’s life by the friends they had, Molly was wealthy indeed.

But there were a few things Molly was not good at:

-she wasn’t good at lying

-she wasn’t good at hurting the feelings of others

-she wasn’t good at being selfish.

-and she wasn’t good at picking out a favorite color

At the risk of sounding like bragging, I must tell you, Molly was the best…

-the best big sister a little brother could ever hope for

-the best mother a son could ever imagine

– and the best friend any man or woman could ever deserve

Molly’s kindness, her positive, uplifting attitude often made an impression on people….

-the fema man

-the hotel employees

-Debbie at Dr. Patilandba’s office

But make no mistake about it, underneath that calm and loving demeanor, Molly was a fighter. And what a fight she put up. She was up against a brutal foe and she fought it like a champion, all the while not feeling sorry for herself, treating all those around her with kindness and respect. It was an amazing thing to see, and profoundly uplifting.

As we finish up, I would like to make a suggestion to you sons, you daughter in laws, you grandchildren, and family and friends. As we go from this place today, honor her memory each day by striving to live life as she did…a life of simplicity, generosity, and humility. Not many people these days do humility very well, but Molly had it down pat. Do as she did- reach out a hand of friendship to those who are lonely: reach out a helping hand to those in need. And finally, seek God’s will in your life each and every moment, each and every day. By seeking to do God’s will, you will experience his powerful and loving Grace, as Molly did.

It is time to close, but one final thing. Over the last several weeks I had the privilege of spending a lot of time talking to Molly. One morning, I was chuckling to myself, and Molly asked why. I said, well, I was just thinking about what John’s gardens up there must be like…it must be an amazing and beautiful thing to behold. As we talked about that prospect, Molly and I were both shedding tears…not tears of sorrow, not tears of remorse, not tears from pain…but tears of pure Joy.

I leave you with this, which is from a Facebook post on November 16th by Chris, Molly’s middle son:

We lost Mom this morning. She passed peacefully. My Mom was truly the best I could have asked for. I realize how special she was by all the people who’s lives she touched. The incredible amount of visits from friends while in the hospital/hospice was a true testament to how special she was. Always kind and giving, I don’t have a single bad memory of her. I Love her so much, and will miss her everyday! Thank you all for the calls, visits, and offers to help. A special thank you to her group of Besties, who I know are hurting now. She loved you all dearly!!

On a note of faith……. While I was at Harbor with Mom last night, With her eyes closed, she starts reaching as to shake someone’s hand. She says “Hi”. Then her tone changes. She reached up with both arms as if to hug someone. She says “Where have you been?” Then she says “You better wait for me!” Right after that the nurse came in to take her vitals and woke her up. I asked her, “Mom were you talking to Dad?” She half smiled and nodded. I️ know she is in a better place with Dad!

We love you Molly Joy! Amen