Is Ommaya Reservoir a New Place to Fish?

Here we are at another low point on the Cancer Roller Coaster Ride. The other day Rianne was very upbeat and excited, knowing that her tumor had shrunken and that radiation was next. The Radiation Oncologist, however, was puzzled at why a Diffuse Large B-Cell Lymphoma was located under the skull and in such an odd place. He and Rianne’s Oncologist collaborated with a Lymphoma Specialist from OHSU and decided that the tumor still needed to be treated chemically.
Radiation is now on hold. The next procedure that she will endure is called Intrathecal Chemotherapy. This will involve surgically installing an Ommaya Reservoir (Port) on top of her skull and sewn under the skin. You may want to Google it (as we immediately did!). I asked a friend if he knew what it was and he asked, "is it a new place to fish?" "Uh - not even close" I replied! In a nutshell, an incision will be made on her scalp to make room for the Port. Then a hole will be drilled beneath the Port and through her skull so that a tube leading from the Port will access the tumor directly - allowing chemotherapy medicines to attack the tumor head-on.
Rianne is understandably no longer excited as she was a few days ago. Her stress level has increased dramatically because of the Lumbar Puncture she is now enduring and also due to the surgical procedure ahead of her. She is still positive but knows there is now a longer road ahead of her.
As I type this post, I am sitting in a waiting area outside of her hospital room. They first drew her blood today to check her blood counts, which were good. She is now undergoing another painful Lumbar Puncture. The spinal fluid extracted by Dr. Cook will be tested for the possibility of cancer in her spine. After he draws the fluid he will inject her with Methotrexate, the first of 8 treatments of the intrathecal chemotherapy. He will alternate it with Cytarabine. Scheduling a surgeon to install the Ommaya Port might take some time, so Dr. Cook will continue to inject the chemicals through her spine until the surgery takes place - hopefully this week, as Rianne has already stated that she isn't looking forward to Thursday's injection through her spine.
Now, more than ever, she needs your prayers, as anything involving surgery of the skull and brain involves high risk.
Dr. Cook has also notified us that he will continue to administer Rituxan through the Port in her chest for systemic coverage throughout her body to continue to fight the cancer cells. Keep in mind – Rianne’s Non-Hodgkins Diffuse Large B-Cell Lymphoma is a VERY serious condition and her Oncologist is continuing to treat it as such. She will be injected through both Ports throughout the next 4 weeks as her treatments continue. August is now spoken for, as well as September, which will be the month for Radiation Treatments.
Ahead of time, thank you for your prayers and for your support. The cards in the mail, the gifts, the texts and the phone calls have all played a vital part in keeping her fighting through all of this – and we thank you for that!
Update: Rianne did well with the Lumbar Puncture but is in pain as the procedure is intense. She was given the option to be infused with the Rituxin today. She elected to return to Coos Bay tomorrow for the infusion as the Rituxin tends to give her a headache. She went through enough pain for today, so we’ll return tomorrow for the Rituxin Infusion. On Thursday she will again return to Coos Bay to be injected with the Cytarabine through the hole in her spine.
Here's another funny one for you: A friend told us this story before we left for Coos Bay this morning. She said she was discussing the Ommaya Port with her husband. She was concerned and said to her husband, "I'm worried that Rianne might get an infection from the shampoo when she washes her hair." Her puzzled husband asked her to repeat herself and think about what she was saying! She then said, "Oh yes! Duh! She doesn't have any hair!!!"

On We Go to Radiation!

It’s been a few days since our last entry - and I didn’t even let you know how her “Peek-a-boo” went. Her colonoscopy went very well for her and the doctor found her to be clear of cancer. The only finding is called Diverticulum, which are small lumps in the colon that can become inflamed unless more fiber is consumed. So, Rianne will now “get after it” with her fiber intake. All else was good and her stress of the possibility of having colon cancer is now GONE!
Rianne had a good weekend and on Monday we returned to NBMC for Chemo Infusion #5. We rose early and departed early, arriving at the facility before 9:00. We went in and met with Dr. Cook, Rianne’s Oncologist, and he said that the results of the Brain MRI from last week showed that the tumor has shrunken considerably. That was GREAT NEWS! He also said she will begin Radiation Treatment sooner than previously planned. He scheduled a consultation with the Radiation Oncologist for Wednesday (today) and sent us on our way. She was on "Cloud 9" all day long - I haven't seen her that happy for over a year!!
Yesterday she rose early and went to work at Curry County Title. She wants to put some hours in before her radiation begins, as she knows it will be every day for several weeks. I picked her up at noon and brought her home. She was tired and needed to rest, and again listened to her body tell her that she needed to lie down. She woke from her nap and did some light housework, then watched a few episodes of “The Mentalist” which is a favorite TV series of hers. She also likes CSI Vegas, CSI Miami, Bones, Lost, Medium, Ghost Whisperer and others. She can watch them for hours and sometimes does. Around 8:30 I coughed and startled her, which means she was dozing off on the couch from her medicine kicking in. I watched her drift off again and woke her to walk her in to the bedroom and tuck her in for the evening.
Today we again rose early and headed to Coos Bay for our consultation with Dr. Jenson, Rianne’s Radiation Oncologist. Before the consultation, just for fun, she tried on a few wigs and giggled the entire time! It was good to see her relax and smile. We met with Dr. Jenson and he explained the procedure to us. She felt very comfortable with him and was impressed with his knowledge of her Thallesemia Minor and also with his overall demeanor. He assured her that the tumor would be radiated successfully and for the first time we were told that her Lymphoma was “curable” versus “treatable”. It was a good emotional boost, but we have learned from experience to be somewhat wary of getting our hopes up too high. We ARE on a roller coaster ride here folks, so we are always keeping our eyes on the track ahead! He informed us that she will receive radiation treatments Monday-Friday for four weeks and that she will also be examined on Tuesdays to check her skin and overall condition. When we finished the consultation, we visited the housing facility behind the Radiation Treatment Center that is provided free of charge for radiation patients who need it. It is a very nice facility and we will likely use it if the daily commute to and from Coos Bay becomes tiresome.
Tomorrow we will return to the Radiation Treatment Center to allow the Oncologist to “map” Rianne’s radiation treatment procedure. This will involve programming the treatment machine to radiate the tumor safely and accurately, while minimizing side effects. “Mapping” will also maximize the effectiveness of the treatment process. He informed us that he will create the “map” and then use a “practice dummy” to insure that the machine is programmed correctly. If necessary, he will also prescribe medication to reduce side effects.
So, in a nutshell, we are entering a new chapter in Rianne’s cancer treatment plan. The radiation will be quite different than the chemotherapy, and we hope she works through it well. She’s a fighter and has a very strong will – I’m sure she’ll come out of it fine!
Thank you for your friendship and for your love, prayers and support. And thank you for reading this Blog and all of your comments. Remember - you are a HUGE reason she is able to get through this difficult season in her life!!

Super Snorkeler

Great weekend for Rianne! On Friday Rianne went in to work for a few hours. She knows her schedule and knows she’ll be down next week, so she insisted on going in to work. Bryan Little, her boss, had to force her to leave and actually drove her home at 2:30pm because he knew she wouldn’t leave on her own. Nice thing about it is that it shows how good she was feeling! When she got home she rested, then we went for a short drive and ended up at the confluence of the Big South Fork Hunter Creek and the mainstem of Hunter Creek. Some call the hole “Sugarloaf”, which is a popular place to swim. We let the dogs out and in they went. Rianne went in also with her new snorkeling gear. As usual, I chickened out due to the cool breeze and “wimp-itis” as some of my friends would call it! She searched for fish while I tossed the dogs a toy 10 or 50 times. When we called it a day she was ready to head home to relax and watch a movie, so we did just that. We went to bed relatively early.
On Saturday we slept in until 9:00 and got up to go for a drive up into the mountains. Hap Flynn and his son, Braidon, were camping by Game Lake, so we drove up to meet them. We ended up meeting them on the way out and decided to eat lunch in the shade at Fairview Meadow. Rianne loves the serenity of the mountains and could stay there for days if she was able to. We enjoyed a good lunch and visited, then headed back toward Gold Beach. When we got to “Sugarloaf” we swam the dogs and this time we both snorkeled! Renny and Kelbi, our labs, sure love the water, but Wickett isn’t so excited about it. She also isn’t excited about being ditched on the bank, so she decided to swim out and hitch a free ride from her best friend, Rianne! Sure made a cute video! We stuck around for a short while longer, as too much exposure to the sun isn’t good for Rianne right now. We returned home, ate dinner and went to bed.
Today we slept in, then watched the movie "Ironman." We received a text from Hap inviting us to go snorkeling, so we went back to Hunter Creek for another splash. Rianne sure is good at everything she does, and snorkeling is another one of those things. She moves through the water effortlessly while I thrash and splash and gasp after inhaling mouthfuls of water. She spots fish well before I do and she dives to swim down next to them. It’s impressive to watch her in action. What an adept swimmer she is!
Tonight we are winding down before her trip to Coos Bay tomorrow. Chemo Infusion #5 is scheduled to take place, but her oncologist stated that he may change the treatment schedule and begin radiation. It’s up in the air for now and we are prepared to do what he instructs, as we are very confident in his ability to treat her. Rianne is a little anxious about it, so please keep her in your thoughts and prayers.
I’m going to cut it short for tonight, as I’d also like to get a good night of rest. We’ll keep you updated on how things go tomorrow. We hope all is well for you and hope you all have a great week!

Rianne was Reading and Reading and Reading Today

Rianne has had a few good days! In our last Blog entry she was a bit discouraged about her road ahead, but since then she has continued to ride the “Cancer Roller Coaster” and has arrived at the top again. The most recent stretch of the ride has been mostly toward the top. Her headaches and aching sternum have been there consistently, but she has curtailed the pain with her medication.
Last weekend she laid low and concentrated on resting. It proved to be a good decision as she reached very good numbers on her Blood Draw, which was yesterday due to the holiday. She has done an excellent job of allowing her body to speak to her instead of pushing it to stay up and do things that cause her to become exhausted. It frustrated her to not watch the fireworks, but her body spoke loudly enough to her to stay home that evening - and that’s exactly what she did.
When her initial CT Scan was analyzed, the oncologist found an area in her colon which concerned him. Although the Chemo has been working in her body for over 2 months, he wants to be certain that there is nothing there. Soooo, as her parents would say, it’s time for a “Peekaboo!” Tomorrow morning she’ll have the joy of undergoing a colonoscopy. As I’ve said before, no sugar coating allowed here. She was ordered to gulp down a 10 ounce bottle of Magnesium Citrate before 10:00 this morning. Her last solid meal was at noon today. At 4:00 this afternoon she was instructed to mix 14 ounces of Miralax with 64 ounces of juice or Gatorade. I talked her into the Gatorade to keep her electrolytes up. The next step was to begin a series of drinking 8 ounces of the new and improved “Miracle Laxative Gatorade” every 20 minutes until it’s all GONE! She drank it all down and waited…..for about 10 seconds that is - then the fun on the toilet began! Then the fun continued……and it continued some more…..and it continued even more…..and she’s still continuing to have fun. She told me to suggest to people who “water the toilet” before a colonoscopy to “dab” and not to “wipe”. She says it tends to keep you from getting too messy during the clean up stage! Also, wear a nightgown or sweats because you may likely need to be able to remove your clothing literally on a moment’s notice! A & D Ointment has now become a new friend of hers! Last night I giggled at her when she was concerned about being a little constipated and concerned that she may not “clear out” before the surgery. She’s not so concerned anymore, as she’s basically been “reading” in the bathroom all afternoon. She’ll probably finish the novel she started by the time all is said and done with the “prepping” for tomorrow’s Peekaboo!
Her spirits have risen again and she is ready to fight again. She really didn’t want to give up, she was just exhausted is all. Rianne has spent countless hours reading and educating herself about Non-Hodgkins Lymphoma and has made enormous headway through her reading. She FULLY understands the seriousness of her condition and knows that without a fight there is no chance of making it out alive. She is once again ready to fight it out with the cancer in her body.
Oh! She’s yelling for more toilet paper so I better go! Thank you for all of your love, support and prayers. If you get a chance to text or call her, ask her how the fire on her backside feels – she’ll surely laugh with you as she explains it!

Below is a favorite joke of Rianne’s, which especially applies today – Sent to her from Kelly Margolis

"The Final Stage"
There were four guys who were in the final stages of interviewing for a prestigious job. They were from Harvard, Yale, MIT, and Texas A&M. The company decided to fly them all in for dinner and a final interview. Over dinner at a fine restaurant, the president of the company told the men that all were very worthy applicants, and that he wished he could hire them all, but that they only had enough money budgeted to hire one person. He told them that he would call each of them in one at a time for a final interview the next day, and that he would ask each one of them the same question. Whoever answered the question the best would be the one hired. All applicants agreed that this was fair.
The next day, the first applicant called in was from Harvard. The president posed the question, "What is the fastest thing in the world?"
The young man thought for a moment and replied, "That would have to be a thought." "Why do you say that?" asked the president. "Well, a thought takes no time at all...it is in your mind in an instant, then gone again." "Ahh, very good. Thank you," replied the president.
Next the same question was posed to the young man from Yale, "What is the fastest thing in the world?" The young man paused and replied, "That would have to be a blink." "Why?" asked the president. "Because you don't even think about a blink, it's just a reflex. You do it in an instant." The president thanked him, then called in the next person.
The young man from MIT was asked what the fastest thing in the world was, and after hesitating for a brief moment, he replied, "I would have to say electricity. Why? Because a man can flip a switch, and immediately, three miles away a light will go on." "I see, very good," replied the president.
Then, the young man from Texas A&M was called in. He, too, was asked, "What is the fastest thing in the world?" "That's easy..." he replied, "that would have to be diarrhea!" Rather stunned, the president asked, "Why do you say that?" "Well, last night after dinner, I was lying in my bed and I got the worst stomach cramps, and before I could THINK, BLINK, or TURN ON THE LIGHTS, it cut loose!"
(He got the job....)

The photo today is of Rianne’s Cancer Toilet which she nicely decorated – her Aunt Annajean and cousins Debbie and Pam Flomer sent a photo of a toilet in Moscow, Idaho with the words “Flush Cancer” painted on it. Rianne wants to paint something like it on her yellow toilet. If you have an idea for a phrase for her toilet, please respond with it in your comment – we still need to paint the words on it for her!

Rianne is Home!

Rianne is home! She and her parents rolled in towing the 5th wheel last evening around 8:00. It’s great to have her here and out of the hospital. She sure had a difficult 5 days up in Coos Bay – mostly because she is so active and was going stir-crazy lying in the hospital bed. While she was there her parents had to “suit up” in germ resistant coverings to prevent the spread of potential infection to her.
On Wednesday she called to tell me that she had to stay for another day. It crushed her and she was crying on the phone. I reminded her that it was for the best and that she’d have around the clock care until her condition improved. She had her digital camera with her and, after she hung up the phone, she took a few photos of herself. One of the tearful photos is posted tonight. She said she is grateful that Becky and Katie were able to listen to her and console her when she called them. Calls to Briana, Crystal and Edrie also helped her get through those difficult moments.
The tears in her eyes tell it all – everything from first learning that she has cancer to….. all of the tests and needles in her arms to…. the miserable rides to and from Coos Bay to…..hours sitting and receiving chemo infusions to….the unbearable headaches and nausea to…..the exhausting blood transfusions to……being away from her husband, home and pets to…..expecting to go home and having to stay another day. Rianne has been through more pain, suffering and heartache in 3 months than most of us endure in a lifetime. She’s bound to have some emotional moments, and that’s exactly what happened when our conversation ended.
Her parents were her guardian angels while she was hospitalized. They were the only people allowed to see her in the sealed room, with the exception of a visit by Brianna Hale, who was smuggled in. Don and Lillian also kept me informed of what was about to happen and when. They gave her a great gag gift – a baby-sized comb and brush for Rianne’s hair, which she currently has none of! They laughed and boosted her spirits, but the best gifts were the 4 rolls of REAL toilet paper. Rianne says, “Hospital TP is like sandpaper and it rubs me raw!”
Now she’s home and her spirits are improving. But they weren’t so bright when she first arrived. The length of the hospitalization exhausted her. We’ll be honest here – she mentioned that she wanted to stop doing chemo and didn’t want to go through with the radiation. She said she is through and that she can’t take it anymore. She is worn out from the awful feeling of having a sick body and seeing needles stabbed into her arms and into her Port. She is scheduled for more tests next week and a colonoscopy the following week. She is worried sick about the possibility of having more cancer in her body.
She asked me if I was going to make her continue with the treatment. I told her that I wouldn’t make her do it but would instead convince her to continue. It was a gentler way of saying “HECK YES YOU’RE GOING TO CONTINUE WITH IT!” I love her too much to allow her to stop now after coming this far. Her chemo infusions are past the halfway mark. The tumor should be shrinking and her future will be bright. She will again become that strong, vibrant Rianne that we all know and love!
This evening her spirits are finally improving. She again has that smile on her face, but I’m concerned about what she was feeling last night and most of today. Her thoughts are understandable but they do concern me. I don’t want her to give up on the fight!! If you too feel that she should continue with the scheduled chemotherapy, radiation and tests, please post a comment for her to read. She could really use the strength of your words right now!!!

I'm Here and She's There

I’m here and she’s there and it’s been a few difficult days. On Sunday morning we left the Emergency Room and prepared to head up to Coos Bay for Rianne to receive another blood transfusion. Instead we decided that her parents would take her up and pull the 5th wheel behind them in case she needed to sleep on the way home. Her temperature and condition were worse than we thought and the oncologist decided to keep her overnight.
Overnight has now turned into a 4th day. Late Sunday evening, after numerous antibiotic infusions, she received a blood transfusion. On Monday the oncologist ordered a SECOND blood transfusion, as her blood counts, especially the white blood cells, were still lower than preferred. Yesterday she received more antibiotics and today she has been closely monitored.
Tomorrow she may be released to return home, but that was what the oncologist said yesterday. He entered her room today, drew blood, returned with the results and kept her where she was. She called this morning frustrated and tearful, apologizing again and again for having cancer. It absolutely crushes me that she feels this way and it remains a difficult task explaining to her that none of it is any fault of hers. The photo in this post was taken the last time she broke down apologizing and it too was another troublesome moment for her.
Her oncologist explained to her that the infection she has is thought to be part of the chemotherapy process. He said that sometimes it happens due to the chemicals killing off cells throughout the body. Her chemically infused body is very vulnerable during chemo treatment and being hospitalized is also part of the process.
Her spirits were NOT high this morning, but her condition improved when her parents visited her this afternoon. We’re sure fortunate to have her Mom and Dad here right now and are especially thankful that they can be with her in Coos Bay. We are also fortunate to have your prayers and friendship and are grateful to you all.

Another Blood Transfusion

It’s been a week since I have had a chance to make an entry here in the Blog and I apologize for that. I’ve been working at the Gold Beach Football Team Camp and have spent an enormous amount of time away from Rianne. Unfortunately, it may have worked against us this time. Rianne is currently in a hospital bed at Bay Area Hospital in Coos Bay. Her parents took her up this morning and I stayed here to work.
Chemo Infusion #4 on Monday went well for Rianne while she was receiving it, but the ride home from Coos Bay didn’t go as well. On the trip home she became nauseated and also had an awful headache. When she arrived home that evening with her parents and Tate she was sick. We put her in bed and monitored her throughout the night. She recovered on Tuesday and did well the rest of the week.
Yesterday she felt well and joined her parents, Tate and I outside for some yard work. She looked fine and felt well during the day. I should have known better though – the warm sun and the amount of time that she spent outside caught up to her. I left for the camp to work the afternoon shift from 3:00-5:00. I stopped at the store to pick up groceries for dinner, then I began cooking a good meal when I returned home at 6:00. She was resting on the couch and visiting with her parents. She took her evening medication early and had to be woken up to eat. She ate a good amount of protein-filled steak and plunked into bed around 8:30 with a headache. I returned to the camp to work the evening shift from 9:00-11:00 and when I returned home at 11:15 I took her temperature. The thermometer read 99.8 degrees. Since it is a digital thermometer, I take several readings to insure some accuracy – a minute later it read 100.0 degrees. I gave her 2 tylenol in an attempt to reduce the fever, but this time it didn’t work like it has previously done. I fell asleep by her side at 12:15 and at 1:45 she woke me asking for me to take her temperature again. She was hot and clammy and did not look well. This time the thermometer read 100.6 degrees. We have been instructed by our Oncologist to call if her temperature reaches 100.4 degrees, so I took another reading and it settled in at 100.2 degrees. I wasn’t comfortable accepting the drop in the reading so I took another and it read 100.4 degrees. We immediately woke her parents and she asked her father to give her a blessing. He insisted that I call the oncologist first, so I did so. Her doctor and I discussed Rianne’s situation and he instructed me to take her in to the Emergency Room if her temperature didn’t drop in the next 30 minutes. At 2:30 the thermometer read 99.7 degrees on two separate readings. Unsatisfied, I remained awake and took another series of readings at 3:15am. The thermometer beeped an alert sound as each reading ended - they read 100.0, 100.0, and 100.1 degrees respectively. Instantly, I felt a lump in my throat and knew that something was very wrong. At 3:25 I took a final reading and it beeped in at 101.0 degrees. Without any further hesitation, Rianne and I got dressed and headed for Curry General Hospital, while her parents and Tate stayed home to get some sleep.
The Emergency Room Nurse did a good job taking care of Rianne. She slipped an IV into Rianne’s left arm and administered antibiotics and anti-nausea medication into it. She also drew blood to have it analyzed. At 4:00am Tate drove Rianne’s “Cancer Notebook” to the hospital so that the nurse would have access to all of the medications which she is currently taking, which are numerous to say the least. At 4:45 I returned home to pick up Rianne’s pain killer and a glass of Almond Breeze milk, which is the only thing that she can take with some meds to keep them down. She took the pain killer and grimaced as her chest began to feel pain, once again due to the Neulasta shot. Her headache worsened as the night, or should I say the morning, progressed. She was miserable and her face was losing color with each hour. This time I had no doubt in my mind that she was anemic again. The blood results returned with numbers stating exactly that. Both her white blood cells and red blood cells were low in numbers. Another transfusion was necessary, but she would rather travel to Coos Bay to receive it so that her oncologist could also examine her, so she was prepped for the trip. At 7:15am she pleaded for a Demerol shot to relieve the headache pain and received it shortly thereafter. She was finally released to be driven to Coos Bay around 8:00am.
When we arrived at home the decision was made to have her parents take her to Bay Area Hospital and pull the 5th wheel behind them so that they could stay overnight for her tests on Monday. The three of them left at 9:00am and headed north. Rianne was asleep in the back seat of the truck when her head hit the pillow, as the Demerol put her out. It was a helpless feeling for me to watch them drive away, but the schedule of her tests for Monday and my hours at the camp conflicted. Her parents came to Gold Beach to help care for her so that I could work the camp. I intended to follow them up in the van, but they all reminded me that driving to Coos Bay on an hour of sleep wasn’t a safe idea at all.
The oncologist admitted her for the night and possibly may keep her there for a few days. Her fever and low blood counts have her doctor concerned and he won’t release her until her condition improves. I spoke with her this evening after 6:00 and she was still receiving antibiotics. She hadn’t even received any blood yet, a process which took 6-8 hours during the first two transfusions.
Please keep her in your thoughts and prayers. She has had another awfully rough stretch, which we can only hope and pray improves and quickly. I love her so much! Thank you again for your love and support!