The following is documentation of my wife Beverly’s battle with Glioblastoma Multiforme Grade 4 Brain Cancer. I will periodically be updating this page.
WikiPedia has a good article http://en.wikipedia.org/wiki/Glioblastoma_multiforme
Aphasia is how we noticed that she was not well. (Thank you Ryann) Beverly had headaches, and dry eyes. It was the communication issues that alerted us to call 911, and then take her to the emergency room. She refused to go with the paramedics, so I drove her to the ER. After she was checked into the ER, she was in pain. She was sensitive to light. She had a cloth over her eyes. We were fortunate to have her in the hospital when she started to experience serious pain. At this point we had no idea she had a tumor, we thought it was a mini stroke. She was given morphine. She was probably given other medicines, I cannot remember. The main thing was she was no longer in pain. She had a CT Scan that revealed the presence of a tumor. She was transferred from University Hospital to the Neurological ICU of Carolinas Medical Center, also known as CMC Main in Charlotte NC. They have the proper neurological equipment and staff to take care of her. That was Friday May 31st 2013. Surgery was Monday morning.
Saturday 2AM MRI – results at 8 am. The tumor was 4cm. It was located in the left frontal lobe. Dr Mark Smith indicated he thought it was Glioblastoma, but would not be sure until it was removed.
June 3rd 2013 Surgery removed 99.9% of the visible tumor. The surgery lasted 90 minutes. There were no issues. The main surgeon Mark Smith. Assisting him was Michael Heafner. They did a spectacular job. She had 33 staples, which were painlessly removed a few weeks later. In recovery, the aphasia did not allow Beverly to tell us she was in pain. We had to ask her. She has recovered fully from the aphasia, with speech therapy and word search puzzles. Spending time with family really helps. Brain surgery on Monday -she went home Thursday – she went to a speech therapy session on Friday. She never needed a wheelchair. Her recovery was amazing.
June 14th 2013 Beverly had her staples removed. There were 33.
July 1st 2013 Radiation and chemotherapy treatments started. Beverly is under the care of Dr Daniel Haggstrom. Six weeks of temozolomide 125mg (Chemo pill) and Monday-Friday radiation. We had family and friends from our church helping with rides for the radiation. During the final 3 weeks of this treatment, the nausea was very intense.
September 4th 2013 MRI revealed the cancer was growing back. There was a new area where the tumor was growing. The Radiation and Temodar chemo pill were stopped.
September 12th 2013 Beverly gets a port in her shoulder at CMC Main.
September 20th 2013 Beverly started IV chemo every other week using Irinotecan (Camptosar) and Bevacizumab (Avastin) Beverly has a Port in her shoulder. Beverly visits the infusion center of the Levine Cancer institute for 5 hour sessions. Towards the end of the 5 hour session she becomes nauseous. Effects vary – 24 to 48 hours after treatment is the most difficult time. The effects are nausea, and fatigue.
November 14th 2013 MRI results good – the cancer is receding! Wonderful news especially with the holidays approaching.
Jan 15th 2014 MRI. The cancer has stabilized. the new area is not growing. This is great news. The challenge for this year is mitigating the effects of the chemo. One option for her – she does not need to start every day with her nausea meds. She should take them as needed. Most patients cannot take 12 months of the IV chemo Beverly is going through. Fatigue will become overwhelming. Beverly is on her 5th month. She is doing well with the nausea and fatigue.
Feb 7th 2014 Beverly has experienced some nasal bleeding. Her sinuses are very dry. Otherwise she is doing great. She is still very active. She goes shopping a few times a week by herself. She loves to cook for those who cook for her when she is not feeling well. She fights through the bad days, rarely complaining.
March 17th, 2014 MRI results are still stable – no new growth – excellent news! Her dosage of chemo was recently reduced to help shorten her recovery time. Here are some examples of how she is getting stronger – She loves to take hour long walks on the greenway during the day, or in our neighborhood in the evening when I get home from work. She is considering taking up Tai Chi. She still goes shopping by herself in the mornings. She is an inspiration.
March 24th-29th 2014 Beverly’s first cold. She was told not to take cold medicine, so this is a tough time for her.
March 28th, 2014 Beverly rides a bicycle for the first time since the surgery. She did great. Wonderful milestone.
March 31st, 2014 For the first time, Beverly cannot hold down food. She cannot sleep lying down. This was a very difficult week. April 4th she is still extremely cautions about what she is eating. She is lightheaded, most likely from not getting enough nutrition. She has an appointment with a integrated oncologist Dr Bailey-Dorton on the 10th. This should help her create a diet plan for her next chemo.
April 5th 2014. Beverly attends a tree planting event with me, sponsored by my work. She helps plant 2 trees and 2 shrubs.
April 6th 2014 Diet almost back to normal. We decide to record her Greenway walk, to see how far it is. (2.2 miles)
April 16th 2014 – Beverly started taking VSL #3 probiotic following her April 14th chemo, for her digestive system. She started reading the book Anticancer, a New Way of Life, by David Servan-Schreiber. She is able to keep food down. The biggest issue is hiccups.
May 4th 2014 – Beverly starts gardening again.
May 7th 2014 MRI – The cancer has stabilized, or is still stable. It is not growing. Great news. Beverly received the news over the phone a few hours after her MRI. We are ordering a DVD this time so we can see the results on the computer.
May 8th and May 11th 2014. We took a mini vacation to Williamsburg Virginia. Beverly split driving duties. She logged at least 5 hours of interstate driving. At no point did I feel she should not be driving. This is quite a milestone.
May 18th-24th 2014 – Beverly logs over 10 miles of greeway walks. 2.2 miles per day. She does not take breaks. Her days include trips to the store, and visiting friends. She is very active and independent.
May 28th 2014 chemo effects – On the evenings of the 28th and 29th, Beverly was able to sleep. She went shopping on the 29th to multiple stores. She made shrimp and grits for dinner May 29th. (yum) Will update this post in a few days. This is very encouraging, to have minimal effects, this far into IV chemo. Update – May 31st and June 1st (Saturday and Sunday) were tough days. June 2nd – Beverly is back to her morning 2.2 mile walk on the greenway, and active schedule.
June 12th 2014 – Beverly starts yoga, using her favorite DVD, The Gift of Yoga. She is able to do part of the program. Her goal is to complete the program she used to do a few times a week. Beverly is walking the greenway 4 to 5 times a week. Jeopardy at 7 pm is her favorite mind exercise.
June 16th 2014 – Labs and chemo went well. Beverly has good days, going shopping on the 18th and 19th. She goes for 2.2 mile walks on the 20th and 21st.
June 30th 2014 – Chemo effects. The days leading up to chemo Beverly had some fatigue. She slept more than normal. Those are usually her best days. Chemo day was tough, as was the evening, mainly nausea. July 1st – Beverly decided to do her 2.2 mile walk. She had to stop at the mid way point to rest. She waits until I get home, so I can take her shopping. July 2nd – still going strong -another 2.2 mile walk -A trip to the integrated oncologist, by herself – and shopping afterwards.
July 3rd – July 7th 2014 – Beverly and Michael take a 1100 mile road trip to visit Beverly’s relatives in New Jersey and Pennsylvania. 10 and 11 hour drives do not bother her. It was a wonderful trip. We are planning more trips this summer and fall.
July 11th 2014 – MRI day. Beverly drives herself to Levine for her MRI. She then goes to lunch with her friend Ginny at Cheddar’s. Results and IV chemo on Monday.
July 14th 2014 – MRI results day. The MRI is not good. Chemo was cancelled. We meet with Dr Haggstrom on the 17th to discuss alternative treatments. Beverly has been experiencing fatigue the past few weeks. The fatigue causes symptoms similar to her aphasia from last year. We have an active summer, with many plans. We are not cancelling any of those plans.
July 23rd 2014 – Beverly is having balance issues. two falls in the past two days. Neither is serious. This could be due to the lack of Avastin. She has Chemo tomorrow. the CPT11 is being replaced with Carboplatin. She will get this once a month. We will also be looking at trials. These trials will involve travel.
July 26th 2014 – Two days after the infusion of avastin and carboplatin, Beverly is doing well. Chemo on Thursday, she walked 2.2 miles on Friday and Saturday. We will hold off on pursuing trials. The trials would be too stressful.
July 27th 2014 – Beverly walked 2.2 miles today, and went shopping with me. She’s a bit fatigued, but has no nausea issues.
August 6th 2014 – Fatigue is still an issue. Occasional aphasia, that could be related to the fatigue is noticeable by me, because I experienced it last year. Otherwise Beverly is very healthy. She still walks 2 miles on the greenway most mornings. Tomorrow her infusion at Levine is avastin only.
August 9th 2014 – Beverly’s third fall, she was not hurt. She was dazed for a while, unable to sit up. We are unsure what caused it. In the afternoon we celebrated her 58th birthday with family. She was fine the rest of the day.
August 12th 2014 – Three falls, all outdoors, by herself in the backyard while checking n her plants. No injuries, but her arm received a few ant bites. The balance issues, the issues with reasoning and judgement, we (family) decided to no longer let Beverly drive. I have the keys. It has been many days since she has even considered driving. Researching in-home care options. For a few weeks Beverly has experienced pressure on the top of her head. She rarely mentions it.
August 17th 2014 – Tough update. Fatigue and aphasia continue. In addition to verbal issues, Beverly cannot text or compose emails on her iPhone. She does not have the energy or desire to go for walks. Her issues could be temporary. She is still her joyful self. We were hoping to make some videos. Beverly had recently mentioned she wanted to tell her story. She loves sharing her faith, but for the past year she refused to do this in front of a camera. Unfortunately now if you ask her a question, she will repeat the question, but cannot form the sentences to reply. She will look at me when she gets stuck.
August 18th 2014 – A call to Levine to update them of her symptoms, and we have Beverly back on Steroids. She has an MRI tomorrow at 6:30 am. Dr appointment Wednesday morning. Most of the day was spent in bed.
August 20th 2014 – Dr visit at Levine. Beverly will be changing treatment options again, the tumor is on the move. She is on steroids, and that is helping her with enough energy to get through the day. Written and verbal aphasia continue. Her balance issue continue. She is unable to use the TV remotes, she will consistently press the wrong button. I will be spending as much time at home as I can. We setup an office in the bedroom. We are looking into home health care options. We are finalizing her treatment options so I will not put them today. Next avastin is 8/22
August 22nd 2014 – Infusion of avastin, and pill chemo lomustine at Levine. The lomustine, also known as ceenu, is to be taken on an empty stomach. No food for 2 hours. These pills will be taken every 6 weeks. Beverly took the pills at 10:30, we had lunch at 12:30. Back home mid afternoon she threw up all of her lunch. We will need to be more careful next time. I need to make sure she sleeps in a sitting position. Family has setup a caringbridge site to coordinate meals and visits. Beverly’s energy level is low. She spends most of the day in bed. She still helps when she can with laundry, shopping and cooking. http://www.caringbridge.org/visit/welovebeverly
August 23rd 2014 – My brother Tom brings over an upright freezer. We put this in the garage. This will help us when we get too much food at once. Beverly loves soups. She avoids red meat.
September 4th 2014 – We now have a home health aide to stay with Beverly from 8 to 5 while I go to work. She starts Sept 9th. Beverly’s condition has stabilized in the past few weeks, but has not improved. It is too dangerous to leave her on her own due to her communication issues, and fatigue. Beverly has declined any physical or speech therapy. Tomorrow is labs, Dr appointment and avastin.
September 13th 2014 – Visiting Angels first week was a success. They can take Beverly places using Beverly’s car. She went to Concord Mills Mall to see the aquarium. She went grocery shopping at Aldi. She went to our church’s coffee shop. Main concern now is her steroid use. She developed hives on her leg. The area is not spreading. We are down to a half pill a day, from 1 (2mg). We may discontinue the steroid later this week. Communication has not improved. Balance has not improved.
September 14th 2014 – Yesterday (after my update) Beverly had a blackout. Fortunately she was sitting and we caught her. (A friend was visiting) The afternoon and evening were spent in bed. We did not attend service at Meck. Sunday morning Beverly had a second blackout. Fortunately she was sitting. The blackouts were short. Both were less than a minute. Her balance is not good enough to go to church today. She’s not in pain. I can increase the steroid, from 1mg to 2 or 3, if she has pressure headaches.
September 20th 2014 – Yesterday’s labs were good. Next MRI is Oct 1st, next chemo is Oct 2. Beverly had one fall this week. She bruised her thigh. A friend let us borrow a cane, a walker and a wheelchair. She does not need them yet. She should start using the cane but refuses.
September 21st 2014 – a bad fall while helping out in the kitchen. She cut her head. Did not need stitches.
September 24th 2014 – Cut to head is healing, no issues. A good week, with many visitors, and trips with Rose from Visiting Angels. Our fridge is overflowing with gifts of food.
October 1st 2014 – Balance is poor, and energy level is very low. MRI this morning at 9 am. Labs, MRI review, avastin and chemo Oct 2. Lots of family visited this week. Will post another update soon.
Oct 2nd 2014 – This was Beverly’s first use of a wheelchair at Levine Cancer Institute. The MRI was not good, the tumor continues to grow and spread. We are stopping CCNU. Beverly will take a pill called Etoposide. 7 days on 7 days off. She wanted to try this. She still has her joyful nature, and fighting spirit.
October 3rd 2014 – The Etoposide did not set well with Beverly. She threw up multiple times in the afternoon. She spent the day in bed. At times she was completely immobile, but needed to get to the bathroom. Fortunately I am OK with carrying her when she cannot move. It was her decision to take this medicine. I will see if she is willing to take it tomorrow. I will not recommend it.
October 6th 2014 – At the advice of Levine Cancer Institute, the hospice process has been started. In NC the decision rests with the primary care giver. (me)
October 9th 2014 – Hospice is a blessing. Beverly is under the care of an awesome team of Dr’s and nurses and knowledgeable staff. Visiting Beverly will be limited to family and close friends, due to the risk of catching a cold or flu. Updates may be sporadic. We are taking this part of the journey private. By this I mean – no pictures.
October 15th 2014 – Beverly is doing well. She needs quiet, lots of rest, and very few visitors. (and lots of TLC) Her pain is under control. She is handling the medicine well. (Decadron 8mg per day, Kepra twice a day and Senna) Our visiting Angel Linda has done a wonderful job of keeping Beverly comfortable. Beverly cannot walk, we have a commode that we can place next to the hospital bed. The hospital bed is wonderful, as Beverly cannot sit up on her own. Family has been wonderful, everyone asking “what can we do to help?” The hospice nurses will visit in Tuesday and Thursday. We are doing very well on food. family is visiting this weekend. Beverly and I have a few smiles and laughs and joyous moments each day. We are overwhelmed by the outpouring of love from our family, our church family, our work family, our neighbors. We are truly blessed.
October 23rd 2014 – Nate, the RN from Hospice advised us that we should stop using the commode. Judith from Visiting Angels has experience in what we need to do. Judith also noticed pain that Beverly is experiencing. It is difficult with the aphasia to tell if Beverly is in pain. Beverly still has smiles, and a few words for visiting family.
November 1st 2014 – Our first full week of Beverly being bedridden has had its challenges. We are learning how to keep her comfortable and clean. I am the night shift. My mornings sometimes start at 4am. Beverly is still doing well with the 8mg of steroids. She is not in pain. She has stopped speaking. Right side paralysis has worsened. Left side is still good. She likes to hold my hand (or anyone’s) and grip it tight.
November 8th 2014 – Beverly’s condition has not changed that much in the past week. She still cannot talk. She was coughing a bit on the 7th. Eating and swallowing may become a concern soon. The past few days in the late afternoon she overheats, or sweats to the point where we use a towel over her pillow. Occasionally when asked yes or no questions she does nothing. We just have to wait, and ask later. We are getting better at her care being fully bedridden. She can no longer sit up or use a wheelchair. She still has a smile for visitors.
November 9th 2014 – Beverly’s condition worsened to the point where we contacted Hospice for advice. The RN arrived and evaluated her. We are starting to use morphine for pain and atropine for saliva buildup. She has been unresponsive all day. She is still able to eat.
November 19th 2014 – Beverly passed away peacefully at home at 8am. I was by her side.
Communication issue related to the initial tumor. Beverly will disagree with me, when I say something that requires action. I have to learn to do things without saying them. This issue is only with me. If I try to explain this issue to people they usually laugh, and say that is every marriage. This issue is related to the location of the tumor. Left frontal lobe glioblastoma multiforme tumors cause this issue. Fortunately there are times when we can communicate as husband and wife. My wife rocks. I love her dearly.
The treatments continue, as long as Beverly can handle them, or a cure is found. A more accurate statement is -When her treatments reach 1 year this fall, the Dr’s at Levine will assess her treatment options. Most patients can only handle 1 year of the IV Chemo.
Nausea Medicines (note – this section is not 100% complete) For nausea we use Omeprazola (Prilosec) 20mg, Promethazine (Phenergan) 25mg, and Ondansetron 8mg. The Prilosec replaced the Pepcid which did not help. Each day Beverly decides how much to take and when. We made the mistake of just taking the same meds each day, when they were not needed. Providing feedback to the nurses at Levine has helped Beverly manage her nausea and medicine. VSL#3 probiotic.
DIET notes When on Temodar, her appetite and taste were severely affected. She had no appetite and little interest in foods she normally likes. On the IV chemo she has a nearly normal diet. She enjoys eating food again. Here is a list of helpful food and drink.
- Mangosteen Juice – Energy and cell regrowth. We order this from Amazon. We stopped using this. It is better than espresso, if you need energy.
- Aloe Vera Juice – Nausea and digestive system. We get this from a local Asian store. We stopped using this.
- Pedialyte Popsicles – Nausea. We get this at CVS. She only uses this for intense nausea.
- Prune Juice – Digestive.
- Soup – Beverly loves making all kinds of soup. She makes an awesome lentil soup that she brings to her treatments.
- Ginger Ale, Ginger Tea, anything with Ginger. For nausea
- See’s Candies – Gourmet Lollypops
- April 2014 – VSL #3 probiotic. to strengthen digestive system.
- May 2014 – Alkaline water.
- May 2014 – Trader Joe’s Beefless ground beef – for recipes that require beef.
- July 2014 – Fungi Perfecti Host Defense My Community – Mushroom pills, for immune support.
Personal Notes CMC and Levine have been wonderful. We are fortunate to have excellent medical facilties so close to home.
Beverly’s strong Christian faith, and the prayers and support from our family, friends, co workers, and the overwhelming support from Mecklenburg Community Church have also played a huge role in her battle. We are very blessed.
Writing, documenting and communicating have been a big help for me.
As of May 2014. Beverly enjoys cooking for others, shopping on her own, worshiping at Mecklenburg Community Church, going for walks with me on the greenway, and spending time with family.
View of the tumor pre-surgery. June 1st. The Dr’s knew what this was before pathology was done.
June 3rd post surgery. The tumor removed. The arrows are pointing to an area that is most likely scar tissue. The surgeons are confident they removed 99.9% of the tumor. Unfortunately with this type of cancer the 0.1% can grow back.
June 3rd MRI. These two dots are far from the tumor. They are areas of concern.
September 4th MRI. This was a difficult day. The Temodar chemo pill and radiation were not working. The area of concern was growing. Beverly immediately stopped radiation and Temodar, and had a port installed for IV chemo.