Thursday, August 22, 2013
Re: Updates on Ray’s Cancer Cure, Aug 16 – Aug 22, 2013.
Ray and I thank you for all your well wishes and prayers in the form of cards, gifts, texts, emails, and being of service to us. Your supportive love and concern is the bright spot of our days.
Ray’s health has taken a big u-turn for the better. All the many unexpected medical problems are now under control or gone. Ray is only dealing with throat soreness and overall fatigue from the effects of his radiation…. which by the way is tolerable with the pain patches he wears. Ray has one more radiation visit tomorrow, Friday, Aug. 23rd and then ONLY one more week (5 days) of radiation next week. We’ve been told that Ray will experience the continuing effects of the radiation given Aug. 30th for 8 or 9 days following this last radiation treatment. So, we are hoping from September 8th Ray’s pain will begin to diminish over the next four months.
Ray’s salivary glands on the left side of his throat will not come back. Ray has lost all taste buds at this time but we’ve been told they will come back eventually (in whole or partial).
Driving Ray to infusion hydration today I noticed Ray had packed a little instructional gold swing book in his day bag he always brings with him. This is good. He turned and smiled broadly when I noticed the book and said, “I believe you are experiencing some very hopeful positive beliefs regarding returning to golf again in the near future.”
And in anticipation of Ray coming to the Wednesday night meeting next week, he received an at home hair cut yesterday from our hairdresser and friend Kathleen LaBonte.
Again, many thanks to you all for your love and concern.
I’ve kept notes since Ray was first diagnosed with cancer but they I really needed a simple list to get a true perspective. I finally composed one and can’t believe how many unexpected medical problems Ray has had.
At the end of this blog I’ve added some photos shot on a much needed photo break I took this afternoon.
Here is the timeline list:
Timeline – Ray Jeffers
4.25.13 ENT Dr. Walz checked lump on left side of Ray’s neck.
5.1.13 – ENT result of Pet Scan – Squamous Cell Carcinoma, Stage 3, left tonsil cancer, possible base of tongue involvement proved incorrect.
5.16.13 – First chemo session. (Paclitaxel)Taxol i.v. 1 hour = Carboplatin (Paraplatin) i.v. 1 hour. Premedication – Decadron (Prednisone, Steroids, Deltasone, Dexamethasone, Solumedrol.
5.23.13 – Second chemo.
5.30.13 – Third chemo.
6.6.13 – No chemo – immune system compromised.
6.13.13 – No chemo – Platelets too low.
6.20.13 – Fourth chemo.
6.27.13 – Fifth chemo.
6.12.13 – Peg stomach feeding tube inserted. Dr. Annunziata.
7.1.13 – Peg tube removed. Dr. Annunziata.
7.5.13 – Stamm tube surgically inserted and abscess cleaned out. Dr. Gering.
7.8.13 – First Erbitux. Eribtux is not chemo but a designer drug that is more effective in combination with radiation. Erbitux causes less cumulative radiation effect. Once a week i.v.
7.15.13 – First day of radiation, 5 days a week, for 7 weeks. Dr. Greenberg. Tim/Kathleen technicians.
8.9.13 – Thirty-four days later found out Ray had an bacterial infection in the opening around the stomach feeding tube. Dr. Annunziata prescribed Levofloxacin 750mg for the bacterial infection called Pseudomonas.
8.12.13 – Increased pain Fentanyl patches to one each: 25mg+50mg. Dr. Greenberg.
8.12.13 – Viral infection /ulcerated lips. Dr. Amy Law – Acyclovir.
8.13.13 – Dr. Younes Office to see Brent Young/wound specialist for bacterial infection. Took culture. Seeing in a week for results.
8.14.13 – Up to this day Ray had been tolerating 6-7 bottles of the 8.45 oz of IsoSource food drink.
8.15.13 – 6:00am Woke Ray from deep sleep to begin feeding him through the tube.
Ray started throwing up directly following the 2nd of the two syringes of food. He’d probably had his antibiotic pill and Acyclovir on an empty stomach. The bottle did not say take with food, however another medical source advised giving this antibiotic with food in the stomach.
• Held off giving any more food until after radiation.
• He continued throwing up right until we had to go to radiation. Fortunately he did not feel any nausea during the radiation treatment. But once out in the parking lot he vomited repeatedly.
• 11:00 and 11:51 – tried giving 2 more syringes of food, first one, 25 minute break and then the other, both very slowly.
• 11:51 R. had a feeling he didn’t feel right.
• Gave Ray two pills (that he’d thrown up earlier) Acyclovir and Levofloxican 750mg.
• 12:20 – R. threw up all morning pills and food.
• 12:51 – right after or before giving pills Ray felt like he may throw up, he remembered.
• 3pm – Just before heading over to Dr. Law’s infusion room Ray had another bout with throwing up.
• 3:30pm – 1.5 hr in Oncologist’s infusion room getting anti nausea medication and hydration.
6pm – Home!
Friday, 8.16.13 – Ray slept like a baby last night. No more throwing up last night or today.
10:15 Dr. Annunziata (Gastroenterologist) – wrote a prescription for anti-nausea suppositories. Yeah, now I can start feeding Ray again. When weighed today the scale showed a 9 pound loss in one week! Not good.
11:30 – Infusion room for 3 hours at the oncologist’s getting hydrated and receiving the last of the antibiotics for the stomach feeding tube bacterial infection.
4:15pm – I went to meet Jen at Starbucks in Palm Springs for an hour to photograph people. Only problem was I forgot to bring the camera body in the camera bag filled with a couple of lenses. Jen and I used my long lens on her camera and took turns shooting competitively?. I’d get to shoot off three shots, and then she’d get to shoot 3 shots. We decided what the rules were before each 3 shots. We had fun. I got my fix.
6:45pm – Home to give Ray his first feeding (since two days ago) while Rob (who had come to visit with Ray while I was out) and Ray were finishing up their two hour visit.
8:00pm – Ray went to sleep and I went to swim some laps with Jen at the MHCC large pool.
Today I compiled an email list I sent updating friends and family on my husband’s progress after having discovered that he had left tonsil and left lymph node cancer three and a half months ago.
I just want you my blog followers to know why I have not had time to take or post photos. Below is a copy of the first email I sent out today.
Here is a picture of Ray taken earlier a while ago with our wonderful doctor, Dr. Annunziata.
Saturday, August 10, 2013
As many of you know already Ray was diagnosed with Stage III Squamous Cell Carcinoma of the left tonsil with left lymph node involvement on April 25, 2013.
Ray’s oncologist, after seeing my tears, told me and Ray, that she is CURING his cancer, not just treating it. The chemotherapy was supposed to last for 6 weeks; however, Ray’s immune system couldn’t tolerate the chemo and the oncologist shortened the length to 4 weeks.
During the chemo treatment Ray had had a stomach feeding tube inserted for the upcoming indicated 7 weeks of radiation. This stomach feeding tube failed and was removed surgically. This was an unexpected nightmare involving a major surgery at Eisenhower Hospital.
While in the hospital Ray had a different kind of stomach feeding tube inserted. Early insertion of a stomach feeding tube is necessary before the radiation treatment so that it is well healed and functioning properly by the time the radiation makes it too painful for Ray to eat.
We were told that having head and neck cancer is good in that there is less likelihood of metastasis. We were also told that it is the most painful radiation treatment.
Ray has now finished his 4th week of radiation and, like the radiation technician told us, “after the 3rd week, Ray, you are going to hate me.” Ray has 3 more weeks to go and each week will leave Ray in more and more pain.
He is already on pain medication, both slow release time patches and pain pills. We have been told to continue increasing the pain dosages as the pain becomes more intense. They say that as long as Ray is taking these pain meds for pain he will not become addicted to them and he should keep on top of his pain.
Here is what Ray would like me to share with all of you.
“Hi, everyone, These next three weeks are going to be a tough period; my toughest period yet in this cancer treatment. I don’t know how available I will be to you. Obviously I won’t be at meetings, and unless there is a real emergency, I don’t think I will have either the energy or the state of mind to meet with anyone. It might be best if you call one another during the next three weeks up to September 10th, and I don’t really know what it’s going to be like dealing with me for a few weeks after that.
I love you all, and I would love to get your messages. Please feel free to call and leave whatever messages you want, but I don’t know how available I will be to get back to you. But I hope you are all doing well. I love you and thank you for all the messages and well wishes. Love you, Ray.”
As a heads up, we’ve been told that with each month following the end of radiation there will be a 25% reduction in pain. My hope is that by the beginning of November if not sooner Ray will be back in action and more available.
I will be giving you occasional updates on how Ray is doing, If anyone else would like information on Ray’s situation please free to forward the email or any future email updates to them.
Please don’t feel you need to reply to the updates on how Ray is doing. I know you are thinking of us and love that you are.
Taking care of Ray is consuming most of my time. So please don’t take offense if I don’t respond to your well wishes and prayers. But be assured your care and concern is invaluable.
Much love and tons of gratitude to you all,
P.S. I don’t have or can’t find all our friend’s email addresses. So if someone asks or mentions that they weren’t included in the emails please tell them to email me at gottago at lindajeffers.com or just forward this email to them.
Jen and I found a neat spot to shoot from, high up, at the top of the P. S. High School track stadium stand stairs, beyond the fence, on the grass. We were alone up there for a short while but then others climbed over fences and up the hill and before we knew it we were surrounded by happy, talkative, energized families with teenagers (who didn’t particularly like that we asked them to exchange places after they sat right in front of us and would have affected our shots as they had hand held lights they were playing with) younger children, infants, and dogs.
I was worried about the possibility of sitting on the grass being others mentioned fire ants were attacking their bare feet. Fire ant bites in the past have sent me to the hospital because I am so allergic to whatever their bite produces. Those people who had joined us on the hillside were getting bitten by ants and now moved closer to where Jen and I were sitting on the grass. Good, maybe they’d be a barrier for us. More and more families arrived, all finding it necessary to sit in front of us, on the sides of us and behind us. Jen and I discussed not liking being in crowds, but quickly changed our comment to what we really didn’t like was the noise of crowds and loss of the serene feel!
We accepted the families and their noise, got into the fireworks that had begun and I only got bit once from a lone ant that caused me no harm.
The fireworks were by far some of the best I’d ever seen. Everything happens so fast once the show starts though. I was shooting with a wide angle lens (16-35mm), wanted to take some photos at 16mm and others at 35mm, and then also had my 70-200mm lens close by to see what close up shots of the fireworks would look like. I had a plan but whoever was shooting off the fireworks shot the fireworks one after another, really fast, with little time in between, and I was afraid of missing shots so never changed my lens.
For a number of shots, I did however try leaving the bulb setting on the shutter cable release open. I would cover the lens with a black, 5
inch flag (to block any light from entering the lens) and then lift the black cover over the lens exposing the next round of fireworks over the previous shots. Doing this allowed me to record multiple exposures on top of each other. But I found some of the exposures were too overexposed in areas leaving no color at all. I was glad I tried this though.
Driving home from LA last night, I spent most of the two and a half hour drive looking for shots. Ray never complained that I wasn’t really present for conversation either:-) It’s amazing how I can get lost and time flies when my eye is to the viewfinder. I believe they call my love of photography an obsession.
Canon 5D Mark III
24-70mm 2.8 L lens
ISO 640, focal length 24mm – for all five shots
On the last 3 photos I used auto exposure bracketing (5 shots at a time) with the exposures ranging from -2 to +2 (The -2 shot was really dark, the -1 shot a little less dark, a 0 shot, and then a much lighter +1 shot and really over exposed +2 shot). I did this so I would have some photos light enough that when all were merged together I could see detail in the darker areas of the photo. (But in Lightroom I realized I couldn’t use the bracketed shots merged together because (duh) some of the bracketed exposures were too slow (like 15 seconds) and that length of time caused blurring in the moon, clouds and water!)
Some of the photos below, I just chose the best of each of the 5 photos and edited that one to get what I’ve posted.