Tuesday, December 26, 2006

 
Jay's Post during Christmas n' chemo.

Whew! Finally, a chance to share some feelings and thoughts about my incredible loving wife and this experience.

Teena chanced a visit to Cabo arriving on the 12th of December. After a flight cancellation sending a shudder through us both, she finally arrived only 1 1/2 hours later than expected- the beneficiary of a partial first-class upgrade! Her many friends were filled with her spirit and and her unselfish presence. It was a week of her spreading herself thinly among her wealth of friends as well as taking our pups (Bendita and Emily) up to our rented beach house at the East Cape (Buena Vista/Los Barriles) for a couple of days of beach-walking and rest while I ran back and forth between our home and work which is underway at Villas de Cortez. We also had a wonderful Posada (Christmas meal and small party) with the kind, commited and caring people that we have the privilege to be working with there. Then it was back to Cabo to re-pack.

The visit was all too short, but it was also taxing and when the time came for us to return together to the Northwest for round 3, we were ready to get on with it.

As most of you know, I am not a novice at this cancer stuff. It is scary. It is also an opportunity to re-align one's self in important and meaningful ways. It is a time of deep and solemn gratitude for the time that we have together. Precious is not sufficient to describe it. It is moving to watch the family gather, connect, and re-connect. We are all we really have. One another. What we are sharing is very significant. Just as you are there for one another, as members of Teena's family, so too are my son, my brother, my family and my intimate circle there for me. And we are all here for one another. It is a tremendous gift we are being given, though it seems to be much the opposite, much of the time.

I just have to look at Teena for strength and a calming reality check. This is just life on life's terms and things, she reminds me, are exactly the way they are supposed to be. So, we have no choice but to grow and re-align the priorities once more. This cancer thing seems not as important as when the initial diagnosis came across the wireless communication line. Now, it seems more interesting again. How do we grow and share the experience?

Two things I know for certain about cancer. First, one of the most important movements in the developed world are women cancer survivors making a difference for future generations as well as provided the experience, strength and hope within their growing network of survivors. And second, this guy Lance Armstrong is changing the awareness level of the disease and its consequences for all of us. He is a hero deserving a status beyond his seven victories in one of the greatest tests of human endurance. He is a leader on a level I am just now beginning to appreciate, and we have the opportunity to contribute to this most worthy of causes. Clearly,
he is demonstrating what is important and what is interesting. Is it not amazing how many more cancer survivors I have become aware of recently?

Tomorrow we go to Portland for the third Taxol IP chemo round, the last dose in this third cycle. Then we are half way home. Three down and three to go. I am also filled with a sense of regret about being so close to Teena these past couple of weeks since I have developed what appears to be a nasty sniffle, turned cough, turned chest cold. She now has a sore throat, and I am concerned since her resistance is supposed to be nil so the toxins can kill the cancer. How do we get around this fear of consequences yet undefined? She tells me not to worry, of course. And, I worry. And I also know that she has excellent care.

Anyhow, back to gratitude. Christmas yesterday was wonderful with a fireplace, prime rib and Yorkshire pudding perfectly prepared by our dear sister Terry. My time here started out in freezing weather, and now it is just the daily sunless days of overcast and drizzle. Remembering one of the several excellent reasons Teena and I decided to make a life in the sun. That and the fact that I cannot imagine a life without her.

Saturday, December 23, 2006

 

Nurse Jay at my side!


Photos from Round 3
Originally uploaded by caboteena.
So the big CIsplatin chemo day was uneventful just very long. It is now Saturday night and I am eating and napping and watching videos and trying to not hug and smootch on Jay who is fighting getting a cold. No colds or flu allowed here!! We wear masks when we sit together and disinfect our hands a zillion times a day and he is sleeping on the sofa bed so all that really stinks but at least we are here together. Hopefully this too shall pass and we will be hugging and kissing by Christmas.
Terry is busy in the garage finishing her gorgeous woodworking Christmas presents. She is such a talented woman! Thankfully the weather has warmed and it is just normal gray and misty in the Northwest.
Feliz Navidad and a Merry Christmas to all. Next chemo not til Wednesday and that is the easiest day of the three and then I am HALF WAY THROUGH CHEMO!!!

 

Photos from Round 3


Photos from Round 3
Originally uploaded by caboteena.
December 20, 2006 Chemo Round 3, Day 1

All is well in the chilly Northwest! Wearing more layers than usual but it could be worse. Jay went to Dr. Ellis (the oncologist) with me like Margo did last time. I liked him even better this time and so did Jay. He is such a believer in meditation, feeding your mind and your soul and body nutrition and speaks directly about those important matters and I find it refreshing in a doctor – and I believe in those things myself so it feels right. He cites studies done (with breast cancer of course!) where they found a 30% LESS recurrence in women who ate low fat diets. So I am on it. I have actually eaten cheeseburgers and French fries twice in this recovery phase, something I do not do in my normal life, so that will stop, we are happy to report (Jay is not so happy about that I imagine!!!). He was also somewhat encouraging about our upcoming celebratory cruise, having done several cruises himself. We have a cruise to Southern Mexico (Acapulco, Xhiejuateno, Manzanillo and NO CABO) for March7-15 out of San Diego. May be a bit early since my immune system will be at its lowest at that time but he said we can watch it and do what we need to do including rebooking the trip (we bought extra insurance) if the doctor sees a problem. But I am feeling so good at this point a whole lot would have to change to make me not get on that ship!!
Jay also went to therapist Vicky with me and that was good. Not too many tears. I think we are both so much less worried lately because I just feel so good and other than the bald look, I look really healthy! I actually like my bald look though I noticed I was shy about it in Cabo even with my close girlfriends. Not sure why but that may change.
I wore my wig for the first time the other night when we went to dinner with Dylan and Kimberly at one of the most delicious restaurants I have been to in a long time. Voted Best Restaurant in Portland last year by the Oregonian. A Peruvian restaurant, very trendy and chic and yum-E! D&K always have the best ideas on where to eat and they just keep getting better! The wig was not a hit as far as I am concerned, uncomfortable and weird but the food and the company was a 10 so that is what matters!!
Brought in Terry’s beautiful hand-cut Christmas tree last night after a yummy chicken stir-fry prepared by Nurse Jay. Decorating to follow. Duck Bowl game this afternoon so hopefully I will get done this Chemo day in time to catch the second half when the Ducks will pull out an upset!!

Saturday, December 02, 2006

 
Margo's Notes on our Adventure with Chemo Round 2

Day 20, Round 1
I arrive at Portland airport, and Teena is waiting for me at the main terminal, wearing aforementioned pink hat and looking beautiful. Not having hair to distract from her face enhances the beauty of some people, such as Teena.
We drive to her cancer counselor appt., as if I had scheduled the flight for just that purpose (not true). The counselor is a lovely woman, and it is not long before Margo gets to cry about this shitty situation her sister is in, with Teena sharing some tears as well. As the button her counselor gave her says, “cancer sucks” for sure. After a bit, Teena talks about how single minded she has become about fighting her illness, and how she doesn’t like or believe in being so self absorbed. Vicky very calmly but clearly points out that Teena is in crisis. She has to be self centered, that is the only way to rally the energy and wits to heal. It is OK. I cry some more that I have such a wonderful sister who has to go through this terrible terrible fight, and who even feels badly for being single minded about her own condition. Noone else in our family would ever question being selfish; we just are. She questions it, and she has to be the one to get IT. NOT FAIR!
Off to a lovely Thai supper, and then on to Kelso.

Day 1, Round 2
Teena knows the drill now; Margo her quasi-helper does not. But its pretty straight forward. Teena gathers the stuff she needs while she sits in a chair for 4 hours, and we’re off to the local clinic for Taxol, IV.
First however we meet with the oncologist, Dr. Ellis. To make a long story short, when Teena asks what the percentages are of survival on the treatment mode she is in, he says “there is no agreement over the statistics. I could try and explain all the current studies but it would take an hour. Bottom line is there is no compelling studies that show that Cisplatin IP works any better than Taxol IV alone. They’ve been trying to prove it for years, but haven’t.” Teena and I sit there like someone punched us in the stomach! She is going thru HELL (Cisplatin IP) for uncertain odds????
Dr. Ellis goes on a long discussion of how NCI came to the conclusion that this was the preferred treatment, and then, round about, says, well, there are two paths to the same destination, and since you’re on this one, then we’ll do it with all our heart, soul, and vigor. WHEW! So, Teena asks him to take over as her oncologist, which he agrees to.
Then she goes and sits in a chair for 4 hours. Margo does a number of errands, and happily, gets to lap swim at the local Y for FREE!!! WHEW!
Pick her up, and there is cell phone stupidity not worth detailing, brought on by MPJ.
Weather looks bad. We’ll be going to Portland early, to be sure to not get caught in an ice storm.

Day 2, Round 2
After a delay, a walk and a solid breakfast, Teena gets the call that her bed is ready. We go wait way too long to be admitted. Teena knows the drill; again MJ is clueless but kind of follows along. She’s in bed, all tubed up, and getting sacks of various fluids. Some of which are very toxic and expensive. Nice nurses, pretty simpatico hospital. MJ goes and does errands and doesn’t feel in the Christmas spirit. I go back and tell Teena how mad I am. She has been through enough in her life. Teena says well that has equipped me well for this fight. SO WHAT I SAY!! NOT FAIR. It is hard to watch your beautiful sister with the whispy head have to be lying there taking in poisons by the bucket. She is calm and collected. I am not. We talk. I read my book about white settlers in Rhodesia. She listens to an inspirational AA speaker on her headphones.
7 hours later the fluids are in and out uneventfully. [Actually, we hope quite eventfully, as in: KILL THE BASTARDS]. We drive home. We watch two medical TV soap shows and eat popcorn. Teena is doing pretty damn well.

Friday, December 01, 2006

 
Thursday, November 30, 2006
Cisplatin IP at Sunnyside Hospital. They had no bed first thing in the morning so Margo and I went out in search of some protein for breakfast. Found the perfect egg and got the phone call that by the time we got there my room would be ready. Turns out Admissions was very backed up and we finally just called Oncology and they let me bypass Admissions to get me going. All went well. 2 hours of hydration fluids followed by 30 minutes of warm saline in my abdomen, followed by 30 minutes of premedications in my arm, followed by 1.5 hours of the magic Cisplatin in my abdomen, followed by 30 minutes of a warm saline chaser, followed by 2 more hours of hydration fluids in my arm! In the meantime it is bed rotisserie time where I lay for 15 minutes on each of my four sides to slosh the chemo all around my abdominal area and when I do visualization about all the Pac-man looking cisplatin molecules running around eating up all the bad cancer guys!! Figure it can’t hurt to offer some suggestions!!
Then home with Margo to a rather tasty and unusual dinner which I will not mention because it may impact Margo’s future abilities to get any nursing jobs! She was in fact the only one who got a stomach ache probably because I was eating very small amounts of the ‘main courses’. The evening ended with a small milk shake and one tired patient more than ready to sleep!! So far so good!

 
Monday, November 27, 2006
Mostly bald by now and getting more used to it, preparations for Round 2 officially started today with a visit to a Naturopathic Nutrition doctor. While I seem to have stopped losing weight I have only gained back maybe a pound so a little guidance seemed like a good idea. The whole idea of how to supplement and eat wisely during chemo is a total unknown to me. He was quite helpful. I had to log everything I ate or drank for 3 days and he used that to offer more healthful suggestions which I will implement. Sister Margo will be in charge of the soup diet for the weekend and then we will see about the rest of the dietary plan once I make it over the weekend!

Tuesday, November 28, 2006
Had blood drawn at my new Longview chemo place. We will hope for high white blood cell counts! Then off to Acupuncture. I did acupuncture a couple times before Round 1 and I did not get sick so I figure I will so whatever I can to make it through Round 2 in similar fashion. Next, I got to pick up Margo and off we went to see the Therapist together. Figure Margo could probably use a little cancer counseling too – I know this woman has been very helpful to me. It was cool to have her there. We both cried a bit, laughed a bit and talked about a ton of things! How great is that?!!

Wednesday, November 29, 2006
Chemo Day 1 Taxol IV here in Longview. Had an appointment with the oncologist who gave me the green light to proceed with Round 2 even though white blood cells are borderline low. This is a different oncologist than the first one I saw because I wanted to talk to someone else. I did not feel comfortable with the inexperience of the woman I talked to a month ago. This man has been practicing for 20 years. Problem is he is not ‘sold’ on Intraperioteneal Chemotherapy. But I appreciated his honesty and told him I am on board to do the absolute most chemo I can to kill this cancer and I would like him to help me do that, to which he agreed. He has also given me a referral to do genetic testing to see if my family carries one of two mutated genes that lead to higher incidence of breast, ovarian, and prostrate cancer. Think it would be a good thing for all us Jones’s to know about.
Then off to Chemo. The room is not open to anyone but patients so Margo went off to do a little swim at the YMCA followed by excessive grocery shopping! (My siblings take such good care of me!). I got done about 4PM. Back at Terry’s the three of us had a yummy dinner of swiss chard, wild rice and some delicious unknown barbequed–to-perfection meat – Margo’s wizardry with help from the BBQ queen Nurse Terry
The weather report for the area called for an ice storm to start about 10PM which would cause for hazardous conditions on the morning commute. I was not willing to risk not being able to make it to Sunnyside so after dinner Margo and I drove to the Days Inn across from the hospital. Good move. Of course it turns out that all we saw in the morning was rain but that was just fine.

Wednesday, November 29, 2006

 

KC and Teena in Terri's kitchen


KC and Teena in Terri's kitchen
Originally uploaded by BernalKC.
OK, KC here. So we're into Round 2 already and here I am posting a picture from my stay during Round 1. But the news is that I have been able to configure Flickr to allow me to post pictures to this blog. Yay!

Thursday, November 16, 2006

 
Wednesday was Chemo Day 8. This was Taxol into my abdomen. The hospital called at 8 and said they had a bed so I could come on down! Today's infusion was different than the Cisplatin day. I guess Taxol is not so hard on the kidney so there was none of the volume of IV fluids as the other day. Just lots of slow drips and rolls around the bed to get the chemo to wash around. Saw Dr. Teware and Sue and they were happy to see me and they got an earful about how awful the weekend was. We talked about meds to sleep and all that is taken care of. I was done by 6PM and by then another storm had taken over Portland. Terry and Kit drove together from Longview to deliver me and my car safely back to Kelso. We had a yummy and entertaining dinner at Red Robin and then sloshed home through the I-5 puddles. I was feeling pretty good, not great. Went to bed and immediately started in on 2 hours of acute diahrea. Pretty miserable. Then it left as quickly as it came and I slept like a baby.
Today, Thursday, I feel better than I have in a very long time! I feel like myself almost (unitl I look at the scars and ports and plugs and wonder whose body this is!!). The sun is shining in Washington and so is my mood! Went to Oregon and bought a wig at this wonderful wig store the Counselor had recommended. Kind, gentle, fun women who are doing a hell of a business these days, unfortunately! The wig will be fine but for today I am just kind of ignoring it...glad I have it for when I will need it.
Jay arrives tomorrow and I am like a young school girl I am so excited!! I just cannot wait to just be with him. We have both been through a TON of stuff since we were last together and it will just be so nice to just BE!

Sunday, November 12, 2006

 
Weekend Ruminations
Basically felt really shitty in an unspecific way. Felt very nauseous Friday morning for a couple hours but went to bed and that passed. Thank God - nauseous is what we do not want here! Fluids are critical to protect my kidney. Must measure all fluids in and all fluids out. Drinking pretty much all meals. Missy took over the KC nurse chore and made me yummy organic chicken soup that I will be enjoying for many months to come! Enjoying is not really honest here. Eating and drinking is a chore. I burp all the time. Drinking water is like pulling teeth sometimes. Seem to do OK with tea. Have a smoothie every morning with Boost and fruit so as long as I can do the soup and smoothie I know I am OK. KC made a delicious salmon dinner for Missy and I as his last hurrah and I ate pretty well at that meal too (and then burped all night!). Sleeping is better. The steroids in pill form are way less strong than the IV days. I am awake but it is a more gentle awake where I can read, take a nap, stress, read, etc. Tonight is just a half dose of the steroid so a good nights sleep might become a reality.
Missy and I stopped at a wig place after taking KC to the airport. It was worse than awful!! Won't go into details but if that is what a wig is like prepare to see me in lots of hats! Thank God Missy was there to help me see some humor in an otherwise ghastly situation!
Terry finally got home about 2:30 this morning after her SF plane was cancelled. It was just in time for my insomnia time of night and it was such a joy and a relief to know she is home. She brought me a wonderful, Mexican stuffed puppy named Cortez from my dear friends in Cabo. He is happily sitting next to me as I write smiling and making me miss my other home! Thanks dear ones for thinking of me again and again!

Friday, November 10, 2006

 

First week of chemotherapy

November 7, PICC line insertion
Kaiser Interstate
I asked to have a line put in my arm for the IV chemo and all the lab work so I wouldn’t have to be stuck over and over again. It is a normally simple outpatient procedure where a nurse runs a little plastic line into a vein in your upper arm and winds around to run in somewhere around your heart. I have great veins and all nurses get excited to be able to stick me (sickos!). Well looks can be deceiving. They started on my left arm and my great vein kept collapsing as they tried to get past my shoulder. After several attempts they switched to the right arm and got it on the first try. Probably didn’t help that the first nurse was training!!

November 8, Day 1 Chemotherapy, Taxol by IV
Interstate
9AM. KC and I made it to Interstate with no big traffic problems. Helped a lot that the rain had let up and except for Kalama it was a dry commute. Since it was my first day we had a private little ‘room’ in the Infusion room. Everyone was most efficient. They had my pre-treatment fluids running in no time. An educator came in to talk to us about all sorts of stuff. She had a whole chemo book and inside was a detailed color-coded calendar of all my chemo dates, lab draws, doctor appointments, etc. Very very helpful for an early stage Alzheimer victim such as myself! She then started going over all the drugs to be administered, possible side effects etc. Meantime, they are dripping Benadryl into me and I am getting very sleepy. Good thing KC was there to get all that I didn’t hear. I already forget most of it! Then my most favorite pharmacist came in with another little calendar of exactly what meds to take and when and what they are far and what to expect. She is The Best!! The anti-nausea meds are $65/pill and she managed to get me samples since I have no prescription coverage!! Finally Taxol and a nap. KC went out to look for a hot spot and to eat and drink coffee. Took about an hour for the Taxol and then I think I had more IV fluids, can’t really remember now. Altogether the visit was about 5 hours. I felt nothing! I felt fine. We stopped and bought a printer at Office Max on the way home!
BAM! – 2AM – wide awake, ready to go mow the lawn awake! Thought it must be my born-again menopause but it lasted too long. Found out next day that is the steroid they put in my cocktail that I will always have with chemo. Read, did relaxation stuff, think sleep returned about 5:30!!

November 9, Day 2 Chemo, IP Cisplatin
Sunnyside Hospital
They called about 8 to say there was no bed yet but that she would call as soon as she knew. Weird. They cannot schedule a time since you are on the oncology ward in the hospital for IP and they have to have someone discharged to get you in. The good news is we didn’t have to wait long and she called by 10. They put me in a hospital gown and since they want you totally in bed for this treatment they had to put in a Foley catheter for urine. Not my favorite part at all! Kind of like the PICC insertion it took several attempts. Then 2 hours of pre-meds by IV!! Magnesium and some other thing; my favorite steroid again; no sleep or rest inducing goody though so no naps this time. I will get better at the nap part next time! Special IV nurses have to come to prep the port going into my abdomen but it is simple. Port seemed to work fine so I was relieved about that. Finally an hour of Cisplatin in the ab. Not a big deal at all. Then 2 more hours of IV and IP extra fluids and then Bed Aerobics!! They made me roll all around for at least 15 minutes per side to slosh around the liquid in my gut. Not as uncomfortable as it may sound. Then time to go. We left the hospital about 7PM so it was a long-ass day! I felt mostly fine again. A bit bloated but much less than I expected. KC fed me Day 2 of his yummy chicken soup which I had NO desire to eat but made it through a cup any way. For the next 3 days I have a chart to fill out for all liquids IN and all liquids OUT. Staying hydrated is my most important task to protect my kidney from the chemo. Later we both did e-mails and attempted a short walk to try to relieve the hard, bloated, gassy feeling abdomen. Very short walk. Went to bed a little after 11 and BAM! – 2 AM here I am again!! This part could get old! But if this is as bad as it gets I’ll take it!! Sort of a burning feeling in my gut but pretty mild. Think I will go read my Yoga Journal and try to prepare myself for a little sleep since it is now 4:30.

 

The journey starts

Wide awake and time to start documenting my chemo and cancer journey. A lot of this is for me – I have been told that as goes Round 1 so goes other rounds so it may be best to have a little history of Round 1. Some of this may be for those who care and love me so they get a little more detail of my journey. And maybe someday there will be another ovarian cancer patient who is just starting her journey who will find this information helpful and encouraging.

Wednesday, November 08, 2006

 

Day 1, Round 1, Chemo Starts!


Day 1, Round 1, Chemo Starts!
Originally uploaded by caboteena.


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