Team Sheldon: 2019

Chest CT-atelectasis in right lower lobe

My chest CT is showing atelectasis which is most likely from radiation damage, irreversible. I do get short of breath going up stairs and over exerting myself but I’m overweight by 50 lbs at least. It’s normal for fat people to struggle with exercise. They will just continue to monitor it. Same with the spot on my right humoral head. Just watch it. My last CT of the chest did let the radiologist view my T7 & T8 radiated spots and verifies they are still stable. Love it when there’s nothing to report that’s negative. Next scan in December is an MRI of the spine. I guess my leash is still a short one. They watch me so closely and so frequently that it’s easy to get frustrated and annoyed. But negative scans are good and nothing new is what we pray for.

As I write this, sitting in first class on a 787 airplane out of Newark, I realize I’m so blessed to have just spent five days in New York/Newark with my love so he could go rub elbows with other IT geeks. I realize that maybe I really do need a bucket list to be working on to truly live my life! I didn’t even know NYC was on that list...but Erik knew I’d love it like I did. New York was amazing and my eyes were wide just like a kid on Christmas morning. The lights, the sounds, and people, and traffic, transportation, and abundance of police, the shops, and restaurants, the locals and even homeless. The “melting pot” of the country, the largest city in all the USA. I loved it all! I was in awe! I really am blessed to get to share things like this with Erik, who is always there to support me, love me, and spoil me.

College move in day

Moving in my only daughter to SHSU where she will be starting her studies in Pre nursing classes. I’m so proud of her for wanting to follow in my footsteps. It more excited she will understand my diagnosis and be able to help me when I’m at the end of my journey to take the weight off my husband. Not that I’m wishing for her to experience the inevitable but I will be glad it’s her by my side helping the family understand what is happening to me. It’s bittersweet watching her leave my nest and go out exploring on her own. I will miss knowing she is tucked away safe in her room at night just a flight of stairs away. I will miss the jibber jabber and countless hours of talking only she could do. I will even miss the attitude which seems weird. She’s growing into herself and finding her way. She’s becoming the woman she wants to be. She’s been through so much in her short 18 years and I’m hoping to see what happens these next 18 years as she becomes a nurse, if that’s what she chooses, a wife and a mother someday. I pray she never has to experience breast cancer like me. I know she will always worry and I pray too she can find peace. I pray I get to see my grand babies from all my children and go on trips and travel. I pray cancer doesn’t take me down too fast and I can enjoy my life instead of worry about the next scan or next spot. I’m just so proud right now of my two oldest children for going to college and I know cancer can not take this emotion from me!

Research on Ibrance and faslodex

FASLODEX is given on Days 1, 15, and 29 of the first month and then once a month thereafter. Your treatment consists of 2 injections into your buttock muscle, administered by a health care professional. The 500 mg dose is given as 2 injections of 250 mg each, 1 into each buttock.

SIDE EFFECTS:

Pain/swelling/redness at the injection site, nausea, vomiting, loss of appetite, constipation, diarrhea, upset stomach, dizziness, tiredness, weakness, headache, body aches/pains, flushing and sweating (hot flushes/hot flashes), or trouble sleeping may occur.

The cost for Faslodex intramuscular solution (50 mg/mL) is around $2,033 for a supply of 10 milliliters,

One shot

USES: Faslodex is used to treat breast cancer that has spread to other areas of the body in women who have gone through "the change of life" (menopause). It is used in patients who have not responded well to other medications (e.g., tamoxifen). Breast cancer cells need the hormone estrogen in order to grow.

The cost for Ibrance oral capsule 75 mg is around $12,387 for a supply of 21 capsules

The most common side effects of Ibrance are:

anemia (low red blood cell count)

fatigue

nausea

neuropathy

mouth sores

hair thinning or loss

diarrhea

vomiting

weakness

decreased appetite

New spot on right humoral head, aka shoulder

So after this last bone scan I took a photo of the image on the screen before the test was read and even to this uneducated scan reader I saw the spot.

The CT scan reveled something different. It detected the spot in the impression.

At first the doctor I felt tried to blow it off. But being the nurse and annoying patient I am, I questioned why they described it as sclerotic, a word used to describe my other mets. I sent an email to the team asking for a second radiologist to read the scans. Quickly after, I received a call from my oncologist and now on Sept 10 I get to have another bone scan, a CT scan, and an MRI of my T7. All on the same day. Pays to be persistent. If this actually comes back as another Mets, it will change my whole treatment plan. I will restart Ibrance, the $14,000/month before insurance, oral chemo and faslodex injections. Which I hear the side effects are bad. So here’s to waiting a month worrying again of what is growing in me.

Cruise funny 2019

In July we took the family on a Royal Caribbean cruise for Jaelyn’s graduation celebratory vacation. Before we got on the ship I was approached by one worker asking if there was a reason the coast guard would be detecting large amounts of radiation when they walked close to me. I immediately confessed it had to be me, no one else around me. They took me behind closed doors to talk to 3 coast guard officers and explain I was a stage four cancer patient and just had a bone scan and ct scan the day before. They felt sorry for me and did tell me the detectors were going off as I was just standing there. Lucky for me they didn’t require any paperwork from my physician and let me on the ship.

T7 radiation

Jaelyn helped me thru the T7 radiation by going to all three treatments with me. It was the week I started back on day shift so I was completely beat by the end of the week, both physically and mentally. The radiation was the same as the T8 spot. Only I had three fractions instead of the one. They tried to talk me into going in a clinical trial but I opted out. Overall it was a breeze. I have my repeat MRI coming up in September, three months from the radiation to see if it is stable.

T7

Had a follow up MRI Wednesday and found out Friday I have a 7mm lesion on the T7. The doctor took my case to the multidisciplinary tumor board and everyone apparently agreed the best thing to do was wait 6 weeks and rescan to see if it’s growing or staying stable. Dr. Yeboa said that she thinks we can treat it like we did the T8 lesion, with stereotactic radiation again, 1 or 3 treatments this time. She wasn’t sure yet when I talked to her. We feel really deflated because when we left the office Wednesday we were told the MRI was good from the preliminary report and we could follow up in a year. Things change fast. I hate this rollercoaster ride I’m on. I hate what’s it does to my family. I hate telling people I’m ok when there’s cancer growing in my body. I hate pretending I’m ok all the time when I’m clearly not. Erik and I have had some pretty long discussions about how we think this is going to go down. I think honestly I’m at the beginning of metastatic cancer and it’s just going to get worse and worse as time goes on. More lesions here and there popping up. I will continue to fight but I’m wearing down with each new punch this disease takes at me. There is no celebrating with this disease. I’ve learned that just when you think you have a victory something else happens and knocks you down. It’s exhausting. It has to be for the family too. My kids are numb. They don’t even get worked up anymore. We don’t hide anything. Maybe we sugar coat it more than we should but they are just kids. It’s not fair. None of this is fair to anybody.

April is filled up with Doctor appts and scans

I have a dentist appt, a gynecologist appt, a family practice appt to refill meds plus labs, an MRI of my thoracic spine and appt with the radiation oncologist afterwards, a nuclear med full body bone scan followed by a CT scan...all in April while I’m trying to start back up to work full time nights and while Braden plays basketball out of town most weekends. Oh and did I mention we also have prom activities for Jaelyn and a orthodontist consult for Evan? I don’t know how I will get it all done!

Surgery update

So I’ve been very behind on keeping up with this blog. But my second surgery came and went on February 22nd and all went well. I had what was found to be Ovarian Remnant Syndrome where part of my ovarian tissue was left in the abdomen during my ovary removal in 2017. It started growing into functioning ovarian tissue meaning it was producing hormones making me jump out of menopause. Something I asked several docs about by the way. Why was I one day hit flashing and the next all of a sudden not doing it any more? No one then had an answer but we do now. I stayed I. The hospital three nights and came home to recover only I had to have a catheter for 10 days because the ovarian tissue was attached to the bladder and I had to have part of the bladder removed and repaired. I developed a UTI (staph) from the catheter and was readmitted thru the ER at MD Anderson the day after the catheter came out due to fevers. The highest I got to was 103.2F! And it was the day my sister came to visit. While in the ER they wanted to do a CT scan to make sure it wasn’t a leak from my surgery. When they went to inject the contrast in my vein, my IV blew and all the contrast ended up in my arm tissue. Very painful! And I was very annoyed by this point. Five IV sticks total and I finally with support is my surgeon I said thanks but no thanks, send me home! The risk to attempt the contrast through my very small delicate veins was too much and outweighed the benefits of the CT scan since my body was already responding to the oral antibiotics for the UTI symptoms. I haven’t cried in a long time but that situation frustrated me and for the fact I was exhausted because no one sleeps in the ER. Erik and Autumn came to get me and save me from the traumatic visit to that ER. I didn’t spike another fever but about a week after stopping my antibiotics I got another UTI in addition to two weeks of diarrhea from the first round of meds. I’m 9 days from going back to work and feeling good. Except the menopause symptoms have returned and I’m not sleeping well through the night. Hot flashes are the worst! While Erik freezes at night, I am sweating.

Path report

Talked with the physician assistant to the surgeon. She said that the biopsies that they took during the first surgery are consistent with scar tissue around that cyst. The cyst it self was not biopsied yet and won’t be sent for pathology until the second surgery is completed. At this point he feels that the hot chemo part of the surgery is too risky to do, the risks outweigh the benefits of it at this point. I will still wake up with a big incision, a ureter stent on the right side, and most likely a NG tube. My hospital stay well be 4 to 5 days rather than 12 days. But they do not feel the need to resection the bowel at this point. All this is subject to change once they get in there, obviously. But we couldn’t be happier about the results of the pathology!

Overall I am pleased with how recovery has been this last 6 days. Besides the stinging in the tummy, I might be moving slower and I’m definitely lonely during the day when everyone has things to do but me. I’m bored really. Not a TV watcher or reader makes it hard to waste time. I can only check Facebook and Instagram so much throughout the day. I do notice some postoperative blues set in about day 3. I’m not really ready so to say for surgery two but I’m as ready as I’ll ever be. I was disappointed how the surgeon managed my pain initially and worry a lot how it will be managed with a great big incision down my whole tummy. Erik’s been working the business a lot in his off time and he’s so preoccupied with that and getting that up and running smoothly that I am feeling maybe I need someone to come stay with me to help me out so he can work. Kids all have their own things going on that I can’t help with either. My sister will be coming in March for 4 days which will be wonderful. Maybe this surgery won’t be as big of a deal as I’m making it in my head. After all, it’s just a cyst right? I’ve had bigger ovarian cysts in my lifetime that just stayed in there and dissolved in their own time. I have a lot of questions now that the HIPEC is off the table. Seems to me a NG tube, ureter stents, and even a midline incision seem like overkill. Guess I will find out at my appointment on Thursday.

Surgery one complete

Surgery #1 complete. Doc said nothing new has popped up (no new cysts) except for the original cyst/mass which is around 6cm. He did say there was a lot of scar tissue in there that he biopsied and we will have results back in 5 days. Scar tissue also covers the cyst/mass thing so hard to see if it’s mesothelioma or not. It is NOT attached to the bowel or bladder like originally anticipated. Praise God! Once we get the biopsy back he will decide if “hot” chemo is needed in the abdomen or not. Still having surgery on February 22nd. Just don’t know the extent of it. Overall the surgeon was optimist and felt good about what he saw. So now we wait another 5 days for the path report.

Problem is it’s been not even 24 hrs on pain meds and I’m not sleeping because I’m itching like mad! Pain pills and me do not get along! Plus even if I did handle pain meds well, the fellow who is the surgeons intern, only prescribed 10 pills total, 1 tablet every 8 hrs for three days for pain. That’s it! I understand the opioid crisi all too well in my job but what kind of pain meds will I get if I come home with a large midline incision after surgery 2? I’m concerned how this is going to work. I need the pain meds but I can’t tolerate any out there and they don’t prescribe much of them anyways. So for now, Tylenol it is.

Before checking in

Waiting to go back

After surgery at lunch. Notice the drowsy eyes from anesthesia

Days away from getting answers

I am scheduled for my first surgery on February 11. The surgery is just to go in and look around and see what we are dealing with. I hope after that hour long procedure to have a plan for the surgery on February 22nd. I’m super nervous about all of it. Is this a different form of cancer now or a peritoneal inclusion cyst? Either way I’m assured the treatment to correct it is the same and involves HIPEC. I just want the second surgery date to come and go fast so I can be healing in my own home, in my own bed. They promise me a week or two in the hospital due to sluggish bowels after surgery. Not looking forward to that at all.

Here’s a photo of my surgeon, Dr. Keith Fournier

Overwhelming response/blessings

Friday I took it upon myself to start a fundraiser to help Erik with MDA expenses. All I wanted for him was gas money and parking money and maybe a meal or two per day at the hospital. Well $300 goal turned into $8005! That well exceeds my wildest dreams! That pays for months of mortgage and the expenses at MDA I was hoping to get covered. Not only that but we’ve set up a meal train for a month, every Monday, Wednesday, and Friday. Thanks to Amy and Stuart Joines for their help in that matter. Cara from KSBJ is working on gift cards for gas and groceries and food for kids too. I’m planning an overnight rotation to help me while inpatient so Erik can go home at night with the kids. Everything is falling into place. Now as far as prayers? I have no idea where they are all coming from but there is a lot from all over this country and I couldn’t be better covered if I tried! I am so humbly blessed right now. Now we pray for answers and the next few weeks to fly by so I can get this over with.

Plus we’ve received $900 in cards from generous family not donating on the site! It’s been amazing to watch God work!

Patient teaching for the big surgery by Dr. Keith Fournier

Hyperthermic Intraperitoneal Chemotherapy

About Your Surgery.................................................................................2 Preparing for Surgery..............................................................................3 Day of Surgery ......................................................................................... 5 Recovery ..................................................................................................7 Home Care and Follow-Up ......................................................................8 Resources ................................................................................................9

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About Your Surgery

Welcome

Throughout your treatment, you will follow a specific plan of care. Your plan will depend on your individual diagnosis. The following pages provide an overview of your care plan. Although this material covers standard procedures, each patient receives individualized care.

Health Care Team

Many different health care providers will take care of you in the outpatient clinic and in the inpatient unit. Your primary health care team includes:

 Your attending surgeon and other doctors, including surgical fellows. Fellows are board

certified surgeons who have finished medical school and residency. They are receiving

additional training at MD Anderson to learn about cancer surgeries.

 Advanced practice providers including physician assistants (PAs) and nurse practitioners

(APNs)

 Nurses

 Dietitians

 Patient service coordinator (PSC)

 Patient advocates can help solve problems or address concerns you may have.

 Also on staff and available to help you:

- A genetic counselor can discuss your family’s health history with you.

- A social worker and chaplain can address your psychosocial and spiritual concerns.

 Other health care team members will address your specific needs and concerns when you are

admitted to the hospital as an inpatient.

The Surgery

Your doctor recommends that you have a cytoreductive surgery or tumor debulking. This may be combined with a procedure called hyperthermic intraperitoneal chemotherapy (HIPEC) depending on your discussion with your surgeon. Cytoreductive surgery is a major operation that requires an experienced surgical team. An attending surgeon with many years of experience will perform your surgery.

The goal of surgery is to remove all of the visible tumor in the abdominal cavity (this space lies between the abdominal muscles and abdominal organs). Removing the tumor may require removing involved organs such as parts of the intestine, gallbladder, spleen, ovaries and uterus and the lining of the abdominal cavity. Your surgeon may need to create a temporary diverting ileostomy during surgery. This requires wearing a temporary bag to collect stool that comes out along your abdominal wall. If you have a tumor in your pelvis that requires removal of your lower colon, then a diverting ileostomy is necessary to allow that area to heal. If you are eating well and maintaining your weight, the ileostomy is reversed at a later date, typically 6-8 weeks after surgery.

For patients whose tumors can be completely or nearly completely removed by surgery, HIPEC treatment has been shown to improve survival. Chemotherapy is given only if a complete or nearly complete tumor debulking is performed, or if used for palliative purposes to treat fluid in

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the cavity. During the surgery, the abdominal cavity is filled with a chemotherapy drug, which is heated to over 42°C. The patient's abdomen is then rocked back and forth for 60-90 minutes. This ensures that the chemotherapy bathes all areas of the abdominal cavity. The goal is to kill all remaining tumor cells. The surgery combined with HIPEC usually takes about 10 hours.

When to Arrive in Houston

You will need to arrive in Houston several days before your surgery for pre-op appointments and testing. Your arrival date depends on your specific case and varies from patient to patient. See below for more information.

 All patients should hand carry copies of results from any pre-operative testing or lab work done at home.

 Some patients need clearance through our specialty centers such as Internal Medicine, Cardiology, Endocrinology and Urology. If this is your case, you will need to arrive in Houston 2-5 days before surgery.

 For patients not needing clearance from other areas, plan to arrive in Houston 2 days before surgery. You will have appointments with your surgical team, anesthesia team and with the lab for blood work if needed. You will also sign consent forms for treatment and other procedures if needed. These will be explained to you by your health care team.

 If your surgery requires additional assistance from other departmental physicians, you will also have appointments with these providers. Examples of these providers include a plastic surgeon, urologist, a colorectal surgeon, specialized nurses etc. We arrange these appointments as conveniently as possible for you. Providers have specific days when they see patients in clinic. In order to coordinate all aspects of care for multiple providers and appointments, patients must arrive in Houston at least 2-3 days before surgery.

Hospital Stay

The average hospital stay is 14 days, but can vary from 7-17 days. Your discharge date will be determined by how well you recover after surgery.

Stop Smoking Immediately

Smoking increases your chances of complications, slows recovery and may prolong your hospital stay. Because your body will undergo a major operation, we need you to do all you can to assist in your recovery.

Programs are available to help you and/or your loved ones stop smoking. For more information, ask your doctor or nurse.

Preparing for Surgery

Diagnostic Tests

Your doctor may request a number of diagnostic tests 2-4 weeks before surgery. These are helpful in planning the surgery and can include:

 Blood tests

 Electrocardiogram (ECG) – This is a test that records the electrical activity of your heart.

 Possibly a stress ECG – This is an ECG done while you exercise on a bike or treadmill, or an

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exam by a cardiologist.

 X-ray of your chest – These are film images that are produced with low doses of high-energy

radiation.

 Computerized tomography (CT) scan – A test that uses an x-ray machine and a computer to

create detailed pictures of the body, including 3-D images. Do not eat for at least 4 hours before the CT scan. For more information, ask your nurse for a copy of “Computerized Tomography (CT) Scan.”

 Clearance from needed subspecialties (Cardiology, Endocrinology, etc.)

Preoperative Teaching

A nurse will teach you and your care giver how to prepare for your surgery, how to prepare your bowels the day before surgery and how to care for yourself afterward. You will meet with your team before surgery to review these instructions.

About Anesthesia

Anesthesia is a drug-induced state that produces a loss of feeling with or without a loss of consciousness. You will see an anesthesiologist, a doctor trained to give anesthetics (drugs that cause a loss of feeling with or without a loss of consciousness) who supports patients during surgery.

Before surgery, the anesthesiologist will talk to you about anesthetics and what to expect from anesthesia. He or she will also talk to you about the use of an epidural catheter for pain management. An epidural catheter is a small tube placed in your lower back that gives you continuous doses of medicine.

Tell your anesthesiologist about all medicines that you take, including over-the-counter medicine, vitamins, herbs and herbal supplements. For at least 2 weeks before surgery do not take herbs or herbal supplements. These include ginkgo biloba, garlic, ginger, ginseng, St. John's Wort or kava-kava. These products can cause excess blood loss or prolong your anesthesia.

If you take any blood thinners or anti-platelet drugs, you must discuss with your team when to stop taking these before surgery. You may need to stop taking these 1-10 days prior, but if you do not stop at the correct time, your surgery may be cancelled. These medicines include:

 Aspirin or aspirin products

 Blood thinners or anti-platelet drugs, such as Xarelto®, Coumadin® (warfarin), Pradaxa®,

Eliquis®, Plavix®, Aggrenox, Fragmin, etc.

 Lovenox or heparin injections

 Anti-inflammatory medicine (such as ibuprofen products like Advil®, Aleve®, and Motrin®)

unless instructed by your doctor.

Your anesthesiologist may allow you to take your regular medicines with a small amount of water on the day of surgery. Talk to your doctor or nurse about this.

Packing for the Hospital

Bring these items with you:

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 These educational materials

 Basic toiletries, such as comb, toothbrush and toothpaste

 Slippers and a robe

 Optional items: ear plugs and eye mask

Do not bring credit cards, money or jewelry. If you bring valuables, ask family or friends to keep them until you return to your hospital room after treatment. If no one is able to help, ask the nurse to store your valuables. MD Anderson is not responsible for lost or stolen items.

Admission Information

Check into the hospital on the day of your surgery. You will be given the telephone number to hospital admissions at your anesthesia appointment. Call this number after 5 p.m. the day before surgery to receive instructions on what time and where to report the day of surgery. You will need to have a place to stay in the Houston area 1-2 days before your surgery.

Preparing Your Bowels for Surgery

The nurse will give you instructions during your clinic appointment on how to prepare your bowels. Do not eat or drink anything after midnight the night before your surgery.

Visitors

You may have 1-2 family members/friends stay with you in the holding area before surgery. Afterwards, they will be directed to the surgery waiting area. This area is staffed by volunteers who will assist them. Family and friends are not allowed in the operating room. You may have only 1 person stay with you overnight in your hospital room. All patient rooms are private rooms with their own bathroom. Overnight visitors are not permitted to stay in the waiting room areas or lobby.

Day of Surgery

Getting Ready

 The day of your surgery, report to the hospital as directed.

 You will wear a hospital gown during the surgery.

 Do not wear anything that can come off during surgery, such as dentures or partial plates,

eyeglasses or contact lenses, jewelry, bobby pins, hair clips, wigs or any removable

prosthesis, such as an artificial eye or leg.

 Go to the bathroom and empty your bladder.

 You may receive medicine to help you relax.

 You will be helped onto a stretcher and moved to the holding area or the operating room.

In the Holding Area

The holding area is a patient waiting room near the operating room. An IV will be placed in a vein in your hand or arm. An IV is a small tube through which you receive medicine and fluids.

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In the Operating Room

 You will lie on an operating table. You will be secured while you are on the table.

 If you feel cold, ask for a blanket.

 The staff will monitor your heart rate.

 You will receive the anesthetic through a vein in your arm (IV).

 After you are asleep, a tube will be placed down your throat to help you breathe.

 Then you will have a Foley catheter placed in your bladder to drain urine.

 You may have stents placed in your ureters if ordered by your surgeon (if so, you would have

met with the urology team before surgery).

After Surgery

 You will most likely wake up with no breathing tube in place in the overnight recovery area. Although very infrequent, some patients need to keep their breathing tube in place after surgery. If this is your case, you will wake up in the intensive care unit (ICU) with your breathing tube attached to a ventilator. A ventilator is a machine that helps you breathe.

 You will be moved to a hospital room in about 24-72 hours. It can take longer to get to your private room if a bed is not available on a surgical floor. Your doctor wants your room to be on a specific floor for patients who have had similar surgeries.

 A nasogastric tube (NG-tube), a thin tube that passes from your nose into your stomach to help control nausea, will still be in place. Depending on the tubes you have, you may not be able to talk. After they are removed, you may have a sore throat for a few days.

 You may not see clearly when you first wake up because of a protective lubricant that was put in your eyes before surgery. Your eyesight will get better soon.

 After the breathing tube is removed, you will be able to sit up on the side of your bed or in a chair with the help of your nurse. You will be instructed to take deep breaths and cough every hour. For more information, see your copy of “Breathing Exercise Using the Incentive Spirometer.”

 Your nurse will show you how splinting (using a pillow to support your incision) will make the breathing exercise less painful.

After the surgery you can expect to have the following:

 An oxygen monitor, a sensor that looks like a clothespin, is slipped over a fingertip to

monitor the oxygen level of your blood

 An IV to give you fluids

 A Foley catheter to drain your bladder

 Compression boots and support hose to prevent blood clots

 Stitches (sutures) or metal clips (staples) to hold the edges of your incision together. Your

nurse will check your incision regularly to make sure there is no bleeding or infection.

 Tubes/drains you may or may not have depending on your needs:

 A Jackson Pratt (JP) drain for future fluid drainage.

 A chest tube(s) may be in place to help keep fluid off of the lungs. This is sometimes

needed if the diaphragm (the muscle below the lungs) is scraped during surgery due to

removing tumors from this area.

 Possibly an N/G tube still in your nose or a G tube out of your stomach

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Your health care team will:

 Monitor your general condition and vital signs

 Weigh you using a bed scale

 Draw blood in the early morning as needed and possibly take a chest x-ray

 Monitor and check your nutritional needs

 Care for your chest tubes and Foley catheter

 Give you IV fluids and medicines as needed

 Give you chest physiotherapy to help loosen mucus in the lungs. This is therapy performed

with a small machine placed on your chest and back that gently vibrates.

 Give you breathing treatments while the breathing tube is in place. Breathing treatments

include medicine that will keep your air passages open.

Recovery

Pain Management

You will receive medicine to help relieve or decrease your pain so that you can move around and recover faster.

During the procedure, your doctor will insert a special nerve block (called TAP) to help reduce pain in your abdomen area. This block will help manage pain for the first few days. Afterwards you will be able to give yourself doses of pain medicine as needed by a patient controlled analgesia (PCA) pump. The PCA pump is a push-button pump that provides small doses of pain medicine through your IV when you need it.

Tell your nurse how you are feeling and if the medicine you are taking helps. It is important for your team to know if you are having other reactions to the medicine besides pain relief. Many different pain medicines are available, and this information will help your doctor prescribe the best medicine for you.

Team Member Roles

 Your primary nurse will watch your progress and make sure you are well prepared when it is time to go home.

 A case manager will meet with you before you are discharged to help make arrangements.

 A dietitian may meet with you to discuss your dietary plan.

 The discharge nurse will give you and your care giver instructions on home care.

 Your doctor, the surgical fellow and advanced practice providers will follow your

progress. Please ask questions and tell them about any problems you have.

Nutrition and Activity

Although appetite loss is normal, nutrition plays an important role in your recovery. You may receive total parenteral nutrition (TPN). This is full nutrient and fluid requirements given through an IV. Some patients have TPN for a short while in the hospital; others are discharged on TPN pending their ability to eat all the calories they need.

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Your health care team will track your progress, and you will be weighed every day. Getting out of bed and walking several times a day will speed your recovery and aid in digestion.

Symptoms to Report

Report the following symptoms to your health care team:

 Nausea or vomiting

 Abdominal pain that is not well controlled with your pain medicine

 No passing of gas for 24 hours

 Rapid, irregular or skipped heartbeats

Home Care and Follow-up

After discharge, you will have follow-up appointments scheduled. If you live out of town, you must plan to remain in the Houston area for at least 1 week after leaving the hospital. Your medical team will check you 1-2 times before you may leave the Houston area.

Activities of Daily Living

When you arrive home, do not expect to do everything you did before surgery. Your body will need 3-6 months to return to a normal activity level. You will tire easily, but activity such as walking will help. Follow the guidelines below.

 Take frequent rest breaks.

 Avoid any strenuous physical activity or heavy housework, until approved by your doctor.

 Do not lift anything weighing more than 5 pounds (2.3 kg) for at least 6 weeks after surgery.

Gradually build up to more weight by adding 5 pounds each week.

 Wear clean, loose clothing over your incision.

 Walk a little more each day.

 Continue your breathing and coughing exercises.

 Eat a well-balanced diet. Use tube feedings if needed.

 Weigh yourself every day and report weight loss to your doctor or nurse.

 Drink at least 2 quarts (8-10, 8-ounce glasses) of fluids per day to help prevent constipation.

 Do not take laxatives unless instructed by your doctor.

 Resume sexual activities whenever you wish. Be careful to prevent strain on your belly

muscles for a least 6 weeks.

 If you must smoke after surgery, wait at least 1 day after leaving the hospital before you

smoke, unless your doctor gives you different instructions.

Caring for Your Incision

It is important to inspect your incision site daily for signs and symptoms of infection. If you have any of the symptoms listed below, contact your doctor immediately.

 Swelling, increased pain or tenderness in your abdomen or incision area

 Increased redness or heat

 Separation of the skin

 Drainage containing pus

 Drainage with a bad odor

 Temperature of 101°F (38.3°C) or higher

Hyperthermic Intraperitoneal Chemotherapy

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Unless otherwise instructed, clean your incision once a day and as needed with soap and water. Pat the area dry with a clean towel. Avoid baths or submerging the incision in water until it is fully closed. You may take showers.

Precautions After Surgery

Do not drive for 2 weeks after you go home and until you are off all prescription pain medicine. After 2 weeks, continue to avoid driving if your incision is painful or if you are taking prescription pain medicine. Your reflexes may be slower than you think. A deployed air bag can cause you harm if you were in an accident. Do not drink alcohol as long as you are taking pain medicine.

After surgery you may have fatigue, diarrhea, weight loss, nausea on and off, a metallic taste in the mouth when eating and a full feeling that does not go away. These feelings will gradually improve. In the meantime try to eat small, frequent meals and stay well hydrated with fluids.

Return Visits

You will have a follow-up visit with your surgeon and medical team within a week after you are discharged. Plans for further therapy will be discussed then.

In general, your long term follow-up visits will be dependent on the final pathology results, as well as the overall results of surgery. At each of these follow-up visits, you will be scheduled for blood tests, a CT scan of your abdomen and pelvis and possibly a chest x-ray or CT scan of your chest.

Resources

Gastrointestinal (GI) Center

Main Building, Floor 7, near Elevator A Monday through Friday, 8 a.m. to 5 p.m. 713-792-2330

Anesthesia Assessment Center

Main Building, Floor 6, near Elevator A 713-792-6133

Emergency Center

In case of an emergency, please call 911, or go to the nearest emergency center. MD Anderson’s Emergency Center is open 24 hours a day, every day. From Holcombe Boulevard, turn at Entrance Marker 3. The entrance is on Bates Street near Garage 2. From inside the Main Building, go to Floor 1, Room P1.3000.

Hyperthermic Intraperitoneal Chemotherapy

Revised 04/2018, Patient Education Page 9 of 9

The dumps

So I’m officially in the dumps. I know I heard the surgeon when we met say peritoneal cystic mesothelioma and yet seeing it come across in my chart really hit me in the face. My whole world is about to turn upside down if this is what I’m faced with. I have been researching HIPEC chemotherapy and cryoreduction surgeries to debulk tumors and I’m scared to death. Temporary ileostomy, TPN, central line, Foley, NG tube, metal staples, midline incision, drains...the MOTHER OF ALL SURGERIES is about to happen to me. I’m giving up dreams I had for 2019 to get my RNC, to goto a MBC summit in Austin, possibly a family cruise. I feel like I am staring death in the face. I’m half not wanting to go thru with this surgery because of fear of the unknown. I’m afraid I won’t come out of this surgery the same. I’m scared it will take away my ability to be a nurse, a mom, a wife. I’m so very upset that my kids and hubby and family have to worry like they do over me. I’m just sick over this.

Getting an EKG for preop clearance

To write or not to write

Jaelyn and I saw the motivational speaker, Rachel Hollis’s documentary movie last night “Made for More”. When we left Jaelyn said “Mom, you should write a book!” Little does she know someday when I’m gone my intentions are for Erik to print this out for our children. But then I got thinking, I’ve been sort of emotionless over the first part of my journey about having cancer. I tried being strong and put up a front for everyone else dealing with MY disease. Protecting my family was my first duty; not getting better at treatments, not going to appointments on time, not beating breast cancer. But being a mother held me responsible for hiding my tears and anger and making the everyday things flow smoothly. So I did it. I was good at it. While the kids would be in school I would go from appt to appt, labs, scans, shots...and it never disrupted their way of living. Sure Erik had to take time off work to come with me from time to time but I eventually got to where I could drive downtown in Houston all alone without a hitch. I was living with cancer. Working full time nights, being a mom and wife, and living as a survivor. But there was no emotion about the fact I was living with a sleeping monster in my body. Now I’m waking up and feeling. I’m angry for my kids. Sad for my husband. I am frustrated for having to go thru the possibility of some stupid mesothelioma in my peritoneum. Why me? I’m not gonna sit here and pity myself but I’m pissed off because I am too healthy to be sick and 2019 was suppose to be my year to get healthy, not sicker. The possibility of more chemo in my body, more scars, more pain...why me? Yes there I said it? Am I being handpicked to have this journey? What is my purpose through it all? What does God want out of my life? These are questions swarming in my little brain right now.

No more psych

By the way, the psychiatrist isn’t in network at MDA to go see for continued mental health. So I quit the lexapro after only taking for a month and I am off the Prozac and honestly I feel ok. A little anxious and not sleeping well but not too crazy.

Abdominal surgeon appt

Today we met Dr Keith Fournier, a peritoneal specialist for MDA.

We got the pleasure of meeting him because in August on my pet scan something small showed up appearing to look like a cyst behind my bladder. Fast forward to November when they did the CT scan it was bigger by a few centimeters so it was notable on the report and I won an unexpected office visit with Kovitz. We quickly ordered a MRI of the abdomen and pelvis to get a closer look. By December it grew 2 more centimeters, up to 5.5cm. This time they were able to see if was in a bad location behind the bladder and possibly attached to the small bowel loops. So today I went downtown to meet with Dr Fournier for a consult about what to do next. Here’s what I wrote on Facebook to all my followers:

Been a while since I updated everyone so thought I’d do that today. Had my three month CT scan in November and it showed something funny in my abdomen behind my bladder. My oncologist quickly ordered a MRI and the radiologists were uncertain what exactly is showing up but whatever it is, it’s close to the bladder and small bowel. I was sent to and met with a peritoneal gastrointestinal surgeon today. He wants to do a laparoscopic surgery to look around to see how complex this thing is we are dealing with. Then I will have an intense surgery where they open me to remove it. Might need help from a urologist if they have to fix the bladder and most likely will end up with a bowel resection and chemo they place inside the abdomen. The surgery is an 8 hr surgery if this is worst case scenario. He can’t just go in and biopsy it during the first surgery because the peritoneum is paper thin and there’s a chance the scope could rupture the cyst and spill dangerous cells in the abdomen. Prayers please we get this set up soon and for a fast, easy, complication free recovery. Recovery will be about 12 weeks. Not the news we were hoping for today.

The surgeon mentioned several times this could be a peritoneal mesothelioma which is a rare form of cancer. Not related to the breast cancer which is odd. Mostly mesothelioma are related to asbestos exposure too and I doubt I’ve worked with asbestos to my knowledge. So we are at a loss for words about this whole thing. Now I sit and wait for my first surgery. The PA Karen Beaty is helping to squeeze me in if there is a cancellation. We hope to get the first and second surgery done within a week of each other so my recovery will be cut shorter than the 12 weeks.