Thurs, May 1

THURSDAY, MAY 01, 2008 10:33 PM, CDT
Today, I had a blood tranfusion (2 bags) and one bag of platelets. Took from 8:30 until almost 4:00. I had the twins with me all day (it was only supposed to take 4 hours) to do They got lots of homeschool done, though.
It's 1030 and my temp is still 100.2. I took 2 tylenols and hope it goes down. I 'm really wiped out , though. My white counts have continued declining all week. I go in on Saturday to see how far the transfusions helped.

Tues, April 29

TUESDAY, APRIL 29, 2008 10:49 AM, PDT
I think I did too much today. I needed to buy some more school supplies for the kids, so mom drove me. And since we were out, we stopped by the fabric store to get some material to make some cool head scarves. Oh, and, just around the corner is the consignment store for women and I got some clearance items because all my clothes got boxed up at home. It all took 2 1/2 hours and I was wiped out the entire rest of the day.
I'll try not to do that again.

SUNDAY, APRIL 27, 2008 10:13 AM, PDT
Today, I felt up to going to church with my parents and my husband and kids who were all with me. The talks were inspirational and moving about personal revelation. I loved the spirit in that meeting.
Wayne and Bryn always come Saturday evenings through Sunday evenings and we love it!
Wayne described to me all that has been happening at our house. How amazing! People coming in all the time helping rip out carpet, pads, tack strips, cleaning, packing. I am totally humbled by the service rendered to our family and want to express my deepest gratitude. He describes the beautiful laminate flooring that was delivered and all the people helping rip out dry rot in the bathroom. It is the most unexpected and overwhelming service either one of us can imagine happening to us. Thank you for all those who are doing anything at all. Thank you.

SATURDAY, APRIL 26, 2008 06:22 PM, CDT
To my friends and family: I want to express my gratitude for those who have come to the nasty hostible (my nephew, Christophers interpretation of hospital) to visit with me. I absolutely love having sweet friends and family come but sometimes I don't feel on top of the world (I know, duh!) But, I have felt bad about a couple of times being inhospitable (cool pun, huh?) when I've been mizabo (miserable).
What I really want to express is that distraction is the name of the game in the hospital. Playing games (I have a storehouse there at all times...self-preservation) and I have a good collection of great books from which, if I'm sorta loopy, I would love to have someone just sit and read to me and not mind too much if I nod off. This is such a long haul of treatment. I am usually at St Joseph's on the 10th floor in either A or C quad for 5-8 days every 2-3 weeks. I will post in this journal when I'm back in and how I'm doing.
Again, thank you all so much for everything (so many of which I am totally clueless about) to help my wonderful husband and family. The separation, particularly at this terrible time, seems cruel. The kids are split up. They don't see their friends. Everything is so upside down and twisted.
My testimony is sure. More sure than ever. I am so grateful for blessings I had and took for granted...but no more. I love the Savior. I love my Heavenly Father. and I love the Comforter who does just that. Life is so good.

SATURDAY, APRIL 26, 2008 08:18 AM, PDT
One of the challenges of chemo is having to drink a gallon of water per day. Aren't we all supposed to be doing THAT anyway? Flush out impurities? Yup. But, this lovely chemo burns my insides from my lips and mouth, through the digestive tract and intestines and on out the other end. Yahoo. It tends to make my tummy feel pretty bloated and unsettled.
I was just discussing with my sweet parents last night how last year I was veritably revelling, albeit with a dose of guilt, that my life was pretty easy. Kids, job, homeschool, house, adoring husband...the whole bit. I had actually thought in my head that if I were to be a little sick and incapable of doing my normal duties, I would have lots of time to study the scriptures, pray and develop a deep relationship with my Father in Heaven. VOILA!
Guests and friends of mine...be careful what your very thoughts are.
And, so, I have the time. Not so much the energy, but certainly plenty of time. I can go slow. It's all good. I am blessed with my mom, dad, niece and daughter who love to read to me when all I can do is close my eyes and listen. I have been transposing the talks given last and this general conference by Elder Holland addressing our very Christianity. I cannot pray without absolutely blubbering like a baby. (They'll probably stop asking me to pray soon)
I try really hard not to think of what my life was before the cancer. I get way too sad and it takes a lot to bounce back from. I can't really even think of the months of chemo in front of me. Does the same thing. What I have, always, is just today. Just today. And, I am almost always grateful for what today is. (Just being real...)
I will indulge just for one moment how very much I miss my husband. One doesn't think about the simple joys and pleasures of actually living with your sweetheart. To see his sweet face every morning. To be hugged every time we are near each other. Just the wink and the smile we exchange. I miss being in my own home. I even miss having to keep up my home. (Well, maybe not the dishes :) ) I miss being in church, partaking of the sacrament, listening to the testimonies and talks of good saints. I miss sitting with my family on the front right pew trying, albeit in vain sometimes, to pay better attention.
I miss teaching Relief Society. I miss being with the sisters.
I do want to express my gratitude to all the good saints of my ward and stake who have helped my husband with the house. I hear that my entire house has been packed up as if we were moving, the carpet ripped out and the floor being prepped for a hardwood surface. This whole thing is rather unnerving as I have no say or influence over what is happening. I have no way to cover up my messes before the world comes in to help. Embarrasstacating in the mostess.
What I have is today. Gratefully, I have today. My job is to make the most of every day, and to bring myself closer to the Lord. He is there waiting for me to move closer, anxiously.
I look forward to reading your comments whenever you have time to check in with this journal. Thank you for your love, prayers and concern for our family.
You have today. What will you do with it?

THURSDAY, APRIL 24, 2008 05:45 PM, PDT
Rachel got her mission call today. Canada, Manitoba, Winnipeg Mission. She reports to the MTC August 13.

WEDNESDAY, APRIL 23, 2008 05:47 PM, PDT
Released from St Joe's after 6 days of chemo. It is so nice to be back home with my parents. It's nice to smell real odors and not have everything smell and taste like chemo. It's very nice to be relaxing with my family....to hear my children's voices and the tender touches of my parents. My mom is so careful about all my meds

FRIDAY, APRIL 18, 2008 05:38 PM, PDT
Didn't get into my room 10A5 until after 5pm. Chemo didn't start until nearly midnight. Side effects were nasty. Nausea was heightened. Chemo was Round B of the Hyper C VAD. I did actually get to the point where I just wanted everything yanked out and let me go home and die. Through some wonderful doctors who kept stopping in to help, I was put on Ativan/Lorazepam which helps with both nausea and with anxiety. It did help make things better. I was in St Joe's for 6 days this time.

WEDNESDAY, APRIL 16, 2008 08:32 PM, PDT
I felt pretty stinkin' good for a couple of days. I was even excited about starting my next round of chemo. I packed my own towels, soap, pj's ...you know, make it more of a hotel with my tastes and smells.

TUESDAY, APRIL 15, 2008 11:00 AM, PDT
Appt with Dr. Norman. chemo through the ommaya port in the head with some extraction of spinal fluid for testing. Announced that my blood counts were good and that we'd start the next round of chemo on Friday the 18th. It always comes too soon. We were to call St Joe's for an open bed starting at 8am.

SUNDAY, APRIL 13, 2008 08:24 PM, PDT
I was released from St Joes after 6 days for complications with chemo side effects.

WEDNESDAY, APRIL 09, 2008 08:22 PM, PDT
Rachel returns home from England.

TUESDAY, APRIL 08, 2008 08:20 AM, PDT
Appt with Dr. Norman for an ommaya chemo administration. Checked lots of blood rates, explained my rectal pains. We left at 4 pm with more meds and shots of inpugen to be taken every day to raise my white blood counts. About 8 pm I was in the bathroom screaming in pain (diarrhea) every 2 hours and through the night. Finally, about 5am I told my mom that I just couldn't stand it any more. She woke my dad up and he rushed me, literally, to St Joe's. I don't know how he didn't get a ticket or into an accident! M;y husband met us at the ER and couldn't figure out how dad beat us here. We spent all day in an exam room testing pain pills. I was too scared to attempt any more BM's. I was admitted to St Joes for 6 days. Very tough days.

SATURDAY, APRIL 05, 2008 05:00 PM, PDT
4 days after chemo ends in Virginia Mason Hospital the sores on my lips and mouth as well as down my esophagus and through my gut to my bowels and rectum become pronounced and painful.

THURSDAY, APRIL 03, 2008 10:00 AM, PDT
Dr. Dasanu administers chemotherapy through my ommaya port in my head. Went well.

WEDNESDAY, APRIL 02, 2008 10:00 AM, PDT
Kieran comes home for a 30 day leave. YAY!

WEDNESDAY, MARCH 26, 2008 10:14 AM, PDT
This was definitely a down point in my life. I was so depressed. I just wanted to check out of the hospital and let the tumor suffocate me within three weeks. I didn't want to go through 6 months of grueling chemo when I would probably just get another round of lymphoblastoma sometime down the road anyway and then, some of the chemos will probably give me another cancer to fight. My sweet husband was nervous and at his wits ends. I was determined not to sign any more consent forms for chemo. I just wanted to die. He called my parents up from Port Orchard to Virginia Mason Hospital to sorta yell at me. I was still undeterred. I was feeling absolutely awful. They called the doctors in and they were hand tied to help other than trying to convince me it would all be better later. The original plan was to release me the next day to St Joseph's Hospital in Tacoma to begin the first round of chemo right away.
The chemo is called Hyper C VAD. I admit to St Joe's for 5-6 days of continuous chemo (sometimes 4-6 of them) and a boat load of anti-nausea and pain meds. They would be delivered through my chest port, which would also be used for blood draws and other meds injected. But, because the whole thing was so unsettled for everyone else (not for me, I was done!) my family decided to keep working on me and not let me leave Virginia Mason. So, I did stay. I did have the chemo. And I was absolutely miserable. For days and days

TUESDAY, MARCH 25, 2008 07:00 AM, PDT
PET SCAN at TRA Imaging I was advised to dress warmly because the room would be cold. I did so, with my own warm chemise blanket. My appointment with Dr. Norman was immediately following which he had specifically asked that someone accompany me. Mom and dad did. We soon called Wayne to join us. I was in big trouble and Dr. Norman had just moved 'heaven and earth' to get a neurosurgeon in Seattle to do an emergency ommaya port placed in my head to facilitate testing on my brain and to use the port for chemotherapy. I called Kieran in Hawaii to tell him the news. He started working on getting himself back here right away for a 30 day leave. The actual surgery didn't take part until late that night. And, unfortunately, the anesthesiologist determined that he could not access my throat. So, the doctors, without my knowledge, opted to do the surgery with just a local anesthetic. BAD idea. I was probably asleep for the first few minutes but soon was startled by feeling myself being shaved, cut, dabbed and the port being placed and shoved into its place and then...the horrific 12 staples. I just cried. There was nothing else I could do. The rest of the night was pretty miserable.

MONDAY, MARCH 24, 2008 10:51 PM, PDT
Rachel leaves for a two week family vacation to England for which she saved up her own money.

FRIDAY, MARCH 21, 2008 07:16 AM, PDT
So, the next step was to implant a portacatheter in my chest near my heart. This port would greatly aid administering chemotherapy. I would not need iv lines constantly. I did have some trouble being able to lie flat at night, so I just slept in a chair for a couple of nights.
We, Papa, Nana, Rachel and her dad, Michael who lives in California, and I went up to Birch Bay near the Canadian border to attend the celebration of Rachel's graduation with a 3.89GPA. Way to go, Rachel!

TUESDAY, MARCH 18, 2008 01:00 AM, PDT
I went to meet with my new oncologist, Dr. Kurt Norman by myself that morning. After all, I'd been through this light lymphoma stuff before, and I had a good idea of what it was going to entail. I now just needed the details about when, where and let's get going. Except that's not the way it was going to go. Dr. Norman was kind, and thorough but concerned that no one was there with me, that this was going to be very serious news and a lot to take in. It certainly was. It wasn't going to be the easy kind. It was going to be the "I'm going to kick your patooty from here to there for 6 months". I left his office crying, of course. I called my husband from the parking garage. The attendant felt sorry for me and just let me leave without paying for my stay. Nice person. Wayne left work immediately to join me at home. I called my parents who likewise left their home to join me at my house. We sat around with the kids to tell them the somber news and express love and blessings to God that we would recover from this trial stronger and healthier.
Since I knew I was going to lose my hair soon anyway, I made an appointment with the Gene Juarez School Academy. Bad idea. Bad hair cut. Bad color. But, hey, it's all good.

FRIDAY, MARCH 14, 2008 09:31 AM, PDT
I was supposed to have the full body and head CT scan. I knew that I needed pre-meds for I and called both the Radiology and Oncology departments on Wednesday (two days ahead) to alert them that I would been pre-meds. Both departments said that I didn't. so, When I arrived for the scan, a very coarse radiologist pronounced that we could not do it, that I needed pre-meds and that it would have to be rescheduled for Monday, Sorry for the inconvenience.
One more surprise I had been working on since the last Wednesday. Kieran had gotten permission to come home on leave for Grampa's funeral. I kept it a secret from everyone, bringing him home late this evening and surprising the family.

MONDAY, MARCH 10, 2008 04:20 PM, PDT
Marilyn called all the siblings to let them know the nursing staff at Ridgemont Terrace didn't think dad was going to last through the night. Although this last couple of weeks had bee exhausting, Wayne and I knew it was the only thing to do to drive back to Port Orchard and be with the family and mom and dad. I actually was a sweet passing. Bruce, who lives in Grantsville, Ut was on his way, and the youngest sister, Kathy, who lives in Michigan was just leaving to join us. The entire rest of the 8 siblings and some spouses and grandchildren were there throughout the peaceful evening. It was such a sweet mixture of compassion and sadness...but mostly an outpouring of love for this great man. We counseled with the staff to know the best way to involve Leona, Elmer's wife of nearly 60 years who has Alzheimer's. Should she be involved? would it create more confusion and anger for her? The counsel was to involve her in everything. She may have to ask repeatedly about what was happening but that she would get 'closure' this way more that any other. I'm glad we did it that way, too. The evening was filled with priesthood blessing from the men/sons upon dad's head and from the men to the women present...individually. The spirit was sweet and calm and again, filled with love for this man and for each other.

SUNDAY, MARCH 09, 2008 04:17 PM, PDT
Wayne visited with Elmer and Leona for a few hours while the rest of us had yet another great family meal at my parents. Wayne and I both stopped in later to visit the folks that evening and found them both well and energetic. They both seemed content. I'm glad that we had that time with them that night.

SATURDAY, MARCH 08, 2008 10:06 AM, PST
I awoke with pressure in both ears and a head ache. I was concerned about the growth of the tumor. I could feel it up my right nostril and was now worried about it putting pressure on my head/brain. We went to the Urgent Care, again, after a wonderful Sunday dinner at mom's, to check out the ears. The ER doc was thorough and called all sorts of other docs to consult. He ultimately ordered a full head CT to be added to the full body scan they would be doing the next Monday.

FRIDAY, MARCH 07, 2008 02:58 PM, PST
Another biopsy had to be scheduled. UW needed another test. And, while we were at it, let's do the bone marrow biopsy under general anesthetic (the only way I would ever do one again. I'd had a double hip bone marrow biopsy done 10 years ago. Absolutely miserable torture)

TUESDAY, MARCH 04, 2008 01:53 PM, PST
An appointment was previously set up for oncololgist Dr. Constantine Dasanu. I knew there had not been enough time for results to come back from UW and I think I came off as rude to Dr. Dasanu. I told him he didn't have anything for me yet, right? He was a bit offended and said that he actually knew quite a bit about me. But, really, no new information that put any future into works. Oh, well.

SUNDAY, MARCH 02, 2008 05:47 PM, PST
Another wonderful Sunday afternoon dinner with my folks in Port Orchard. I was very lethargic and again, mother suggested I get an IV drip of hydration, that she thought I was in danger of dehydration. The Port Orchard satellite was closed so we went all the way to the downtown Tacoma office. It took about an hour and I did feel better the next day.

SATURDAY, MARCH 01, 2008 08:41 AM, PST
The Percoset I was given as post-op was the worst. I vomited violently and was damaging the incision site. Finally, my mother called and suggested that it might be another allergic reaction to my long list of drug reactions. So, Wayne drove all the way down town Tacoma at 9pm to get some different meds for me. What a sweet man.

FRIDAY, FEBRUARY 29, 2008 03:28 PM, PST
Biopsy with Dr Morelock. He also removed 50% of the tumor for ease of breathing and swallowing. The pathology now needs to go to University of Washington for a study. We wait. The recovery from surgery went well this Friday night but Saturday didn't fair so well.

THURSDAY, FEBRUARY 28, 2008 03:19 PM, PST
Got an emergency appointment with Dr. Michael Morelock, an ENT with Group Health. He was very nice and was insistent on getting a biopsy scheduled for either that evening or early the next day. Of course, it was the next day.

WEDNESDAY, FEBRUARY 27, 2008 09:09 AM, PST
I am typically allergic to CT scan dye and have to have a 13 hour preparation of medicines to counteract the dye, but this had to happen quickly. So, prep was emergency and all went well. It took a while to wake up but all went well. I made a new friend and ally in the radiology department at Group Health. My parents took me home to my house.

TUESDAY, FEBRUARY 26, 2008 09:32 PM, PST
I saw Dr. Sullivan that next Tuesday and he was a little alarmed at the size of the obstruction in my mouth. I hadn't even felt anything prior to that. But, when he showed me with a mirror and a light I was astounded to see a grayish mass from top to bottom of my mouth and from one side to the other save about a 20% area. He also mentioned that it was probably a recurrence of the Lymphoma from 10 years ago. I knew it, too. He ordered a stat CT Scan to be done today, but Group Health doesn't work that way. I was to be the next day.

TUESDAY, MAY 06, 2008 07:22 PM, PDT
I will be heading back to St Joe's on Thursday. I should be there for 5-6 days. I would love to have visitors. If I'm feeling less than go-get-em, would you like to maybe read to me? And, if I'm feeling great, I'd love to play games. Distraction is the best medicine for the chemo, Any time you can come is great. There is no closed time and I'm actually up most of the night

Wednesday May 7, 2008

What a glorious, fantastic, oh-my-giddy-aunt day!!!! My goodly parents took me to the temple today! Tomorrow I start chemo again and today I was feeling up to going. I did have a little problem about 1/2 before the session was to start that threatened to abort the session and just go home. I was in pain and it looked like it was just gonna keep going. 5 minutes before the company was to leave the chapel for the endowment room, I had the same painful problem again. Mom was sure we'd have to leave. But, she and I both had prayers that I'd be without pain and could withstand the session. I love my Heavenly Father!!! I am so grateful to him that I could be in his holy house, to hear the sacred covenants and feel of the sweet Spirit. Mom and I could hardly finish the session without crying. It was very magical. So, now I'm packing for tomorrow...oh gooooodeeeee.