Rashes and Wedding Shopping

Yes, I know. These two concepts do not usually go hand in hand. I can explain.

My wonderful personal shopper went out with my sisters and me (after having done several advance evenings of scouting), to look for the perfect blouses for them to wear as my bridesmaids. We thought we might have found the answer a couple of times so went ahead and purchased. Then we went to Macy's at Flatirons. They had many nice choices.

The result was that we found a blouse, in everyone's size, that fits nicely, that looks nice on all of them, and that everyone actually will be happy to wear. How many brides can say that about their bridesmaids? Name three.

I'm very excited about it. They will each wear the same color pant which they probably already have an appropriate pair of at home. (Yes, I know this isn't the most lovely grammar you editors have ever read.)

Back to the rash. As we were sitting outside Macy's fitting rooms waiting to find out if they could locate a particular size at one of the other stores, I looked at my arms. There were red welts starting to pop out. I can kind of feel some irritation on other body parts, but don't see the rash yet. So far it is not bothersome, and I'd be REALLY happy to have it only on the parts of my body that are typically covered up.

So, it was a long day, but it was successful. We all had a few laughs about something that only the 5 of us will understand. Thank you to my sisters and B for making this such a great day.

Bridezilla

I'm really not a bridezilla. How can you be when other people are doing all the work? I just think it's kind of a cool word.

We saw the golf club where this shindig is going to take place. It's very nice. It will serve our purposes nicely. My friend designed our invitation and those should be out any time. Tomorrow my personal shopper and I are going to see if we can find clothes for my sisters (and for me). I did find a dress I liked online, so ordered it in two sizes to see if it will work.

A friend is donating a really nice guestbook that she received as a thank-you gift and that is signed by the artist. Her husband wants to be our chauffer from the house to the club. He is going to get a chauffer's hat. That will be really nice.

We picked the processional, wedding, and recessional music. Michael pretty much did that. Good job! We worked out some things about the actual ceremony that we felt strongly about. It's all coming together with little work from me. I do, of course, get the final say about everything, but my wedding planner has great taste and knows all the wedding protocol.

Next week we will meet with the minister to go over everything. Not much left to do except figure out music for the reception.

Round 1 Day 8

This is how they tell where you are in your chemo cycle. I'm still trying to get the lingo down. R1D8 went well. I also started my second drug that night.

I came home and slept and had pretty severe chills, but no fever. I would really like to have a BM, as it's been a couple of days and that is sooooo not like me. My legs and feet are a little numb, sort of like they were when I went in and was ultimately diagnosed with MS. All these things are to be expected. I did have one day of the big D (diarrhea) last Monday, but that was all. So far I don't think I really have anything to complain about.

My Dr was on spring break so saw his PA. I asked about the cancer marker (CA19-9) in the blood and if it can give you an accurate account of what is happening. She said that there is often no direct correlation between the numbers and the status of your cancer. That is usually determined by scans. So next week I will have more questions about knowing how things are going. My white blood cell count was a bit down, so I guess we know the drug did something.

Round 2

Tomorrow is my second chemo infusion and I will start my other drug (daily pill) which will be delivered tomorrow. I'm anxious to know how I will do with both drugs going.

My sisters talked about having a 'sisters day' at chemo. One can pick me up and give Michael a break and then we can meet at the center. I just can't think of anything more fun! (The sisters part is the fun part, of course.)

I got an email from a person, who I found out, has the same doctor I do. The cancer world is really small in many ways, I am finding out.

Renaming the Blog

As you may or may not have noticed, I have renamed the blog. I have receive quite a bit of negative input over the title. My goal was to write another blog later called JRz Final Journey--The Sequel. It is still at the same location, but you see the new title now. There is validity in not letting the name get in the way of all the positive energy coming my way.

I had a previous blog called JRz Journey when I trained for my half marathon. So, I thought this would be appropriate.

Normal Stuff

It's good to do normal stuff like taxes and Easter dinner. My sisters came over yesterday and one did our taxes and the other two cooked. It doesn't get any better than that.

I have two lunch dates this week. Normal stuff, catching up, jokes, and conversation.

We played the last night of our pool league tonight. It was fun. We missed the last two Mondays. Next Monday is the after-league pizza party. I'm glad I played the league. The people are so nice, my game has improved, and it was fun. Who knew 2 years ago, that I'd be playing on a pool league? It wasn't even in my consciousness. It's fun to try something new.

Make sure that you always have something in your life that is fun. If you don't know what that is yet, go out and explore. Take up pool.

Michael

Michael is really the only person I am naming in my journal. I can't not name him, he is an integral part of what is going on.

I know that I can never truly know what this experience is like for him, as he can't really know what it is like for me. We work hard on communication and talking about our feelings. We know that we may need people other than each other to help us through. I have had such an outpouring of support from family and a large group of friends in all parts of the country. Michael has a much smaller family and group of friends. I sometimes think that he is not getting the amount of support and attention he needs and deserves.

He is not a blog writer. We have learned that we process things very differently from each other. We are continuing down the path of those little understandings that will help us get through this journey.

I told Michael that he should have run when I told him I have MS after our first date. He says that he is glad he didn't. That other experiences in his life have prepared him for whatever lies ahead. I know that those experiences are what helped to make him who he is today and part of why I love him.

I just don't want him to get forgotten in all this. It's all so complicated. He may be prepared for this but I don't know that I am.

Sleep

Sleep has rarely been an illusive thing for me. I've always been a good sleeper. Now, not so much. I lie awake in bed thinking about everything. Trying not to go to the 'bad' place. If I take an Ambien, sleep is a way of denying what I am feeling. I still question whether this has all really sunk in or if I'm going through the motions for everyone else. I'm really not sure. I'm afraid that the true reality of it will hit me like a bigger ton of bricks than at that doctor's appointment.

I've never had to do this before. I don't know how to act, or what to feel, or how to deal with it. I'm doing the best that I know how. I would have thought that would give me enough peace to sleep. But not always.

3 Days Later

It's Saturday. I'm feeling good. The headache went away, but I feel a little dehydrated. I need to MAKE myself drink more water. I hate doing that if we're going somewhere, cause then I need to pee. Sheesh! I've had little microseconds of nausea but overall, feel good, other than a bit tired.


We picked up my ring yesterday. They look so much better when they actually fit the finger. It's very pretty. Plans continue to press forward. I've had a number of epiphanies regarding things for the wedding. I met a minister with the last name Reller a number of years ago, after being asked many times if we were related. I thought that it would somehow be significant if he was involved. Thanks to the efforts of my girl Friday, he is doing our ceremony. I was floundering over colors. The ribbon color for pancreatic cancer is purple--problem solved.

Thanks again to my planners and the people contributing to this effort. You are all awesome. We are cleaning up the house today. My sisters are coming tomorrow. One will do our taxes (THANK YOU!) and the others will cook. I'm looking forward to seeing them all in one place.

First Chemo Treatment

Michael, my sister, and I met with the Dr. before the first treatment. I was sweating bullets and could hardly contain my emotions. I had written down a number of questions. In the midst of that, Michael and the Dr. and my sister all joined in on a joke. I asked some question, and the doctor started with an answer that led Michael to say, "If a truck starts out from the east coast going xx miles per hour," then the Dr. said, "and a bus starts from the west coast going xx miles per hour", and my sister finished with, "what's the bus driver's name". We all exploded with laughter.

On chemo day, you always get weighed (yuck) and you alwalys get blood drawn. Those two things are non-negotiable. I will meet with the Dr. the next two weeks and then depending on how blood counts go, may only meet with him every other treatment. It's all dependent on your bloodwork, side effects, and what you need.

We went into the chemo bay with the beautiful view of the Flatirons. I started to cry. My anxiety level was so high. The first nurse tried to get two veins in my left arm--one rolled and the other disappeared. The nurse who had done our chemo class got it right into a vein in the right arm.

They start you off with a 10-minute anti-nausea medication that should work about 24 hours. Then they start your chemo drug. One of the side effects could be a burning sensation at it drips into your body. I waited for it--I didn't get that. We sat there for 30 minutes as the bag emptied and chatted.

Then it's off to scheduling to set up your next appt. Michael and I went to the Great Harvest Bread Co. where I had a half sandwich. Then to Dairy Queen for a cone.

I did take a 3.5 hour nap when we got home. Ate a little dinner. I still felt good. I did have a headache (still have it a bit), but that was it. Every now and then, a microsecond of nausea, then fine.

I won't start my daily pill until early next week, as it had to be ordered from a pharmacy company. So, there is still some unkown there. I also know that things can change as more of the drugs get into my system. So, I am not skating on a cloud, I know that things can change. At this time, however, I choose to think that they will stay like this.

Preparing for C Day

There was much to do this week. The Dr. wanted a bone scan to see if anything was starting to spread within my bones. It was cool seeing my skeleton on the screen of the scan machine. My foot lit up like a trucker's headlights with all the fused bones, and I could see the rib I cracked a year ago in the car accident. The scan was clean.

I also saw my neurologist to discuss the MS medication I'm taking and the chemo drugs I'd be getting. Since the drugs I'll be getting are extremely immunosuppresant, he thought I might want to give up my daily shot for awhile. We'll revisit that at my 6-mo appt in early May.

Michael, one of my sisters, and I went to Chemo Class on Tuesday. One of the nurses sits down with you and goes over the possible side effects of the drugs you will be taking. It's enough to scare the cancer right out of you. Not everyone gets all the side effects and some hardly blink. As you're sitting there tho, you imagine yourself getting the worst of everything. Hence, the meltdown previously mentioned.

It was good information, and we had the opportunity to ask questions. The best part of it is probably that I can't clean the cat boxes anymore. Dang! That was always my favorite thing to do aside from scooping the dog poop. Apparently, I can still do that. Thanks goodness!

After all that, then they send in the financial person who tells you how much each treatment is going to cost. Holy Crap! Nobody has that kind of money. They also have all the information on your insurance, out of pocket maximums, etc. I am so grateful to have the insurance I do. Thank you Ball Aerospace. My costs will be manageable.

The one really nice thing about the cancer center is that first of all, they are all so nice. They have schedulers to coordinate all your appointments. They explain everything to you. They answer your questions patiently. They reiterate constantly that if you have any questions or need anything, do not hesitate to call. The financial person ensured me that there are grants that can be obtained, payment plans to develop, and that the last thing I should do is worry about the financials.

It is a caring place to go, if you have to go to a place like that.

Developing a Sick Sense of Humor

As difficult, scary, depressing, and stressful as this has all been, one does start to develop a macabre sense of humor. It helped during all the notification if I could get people laugh along with me.

It started the day we found out. We are planning a trip to Vegas in a couple of weeks. On the way home late last Friday after getting the final diagnosis, amidst tears and shock, Michael says, "Maybe we should just get married while we're in Vegas". I replied with, "That has got to be the worst proposal any woman could ever get", and we both started laughing hysterically. It's only gone downhill from there.

Now this is not appropriate at all times. But hopefully we will all learn to know those times. One sister said we might as well have some wine and give my liver a run for it's money (not a direct quote) and then asked in horror if that that was too inappropriate. I let her know that we were way beyond that. She was relieved to know what the boundaries were.

The second marriage-related joke came last Sunday when we decided to get wedding rings. Michael asked if maybe he could get mine on consignment, meaning could he get his money back later. Then the sales clerk asked if we wanted the lifetime protection plan. It was all we could do to not bust a gut.

Some people may think this is all weird and in bad taste, and perhaps it is. But laughter is a good thing. It is healing, it brings people together, and it just feels good.

Laugh as much as you can.

The Wedding Planners

In the midst of all this, we are planning a wedding. My good friends have stepped in and are doing all the work. I just have to make a few decisions. They are having a blast. Even under the best circumstances, doing this type of planning is really not my 'thing'.

Friends are donating pieces of the wedding as gifts. It's so great knowing that they are such an integral part of it all.

• One friend is making the bouquet
• One is designing the simple invitations
• One is providing someone for hair and makeup (tho because I may have drastically thinned hair and a rash, another friend suggested a veil)
• One's daughter is doing the cake for cost
• A relative of the Reller clan is doing the ceremony
• I'm trying to see if I could get two friends to sing
• The list goes on.

It's been such a relief to not have to worry about details. Basically I just need to show up.

Meltdown

Tuesday and Wednesday were very stressful. I tried to finish up the work I had. I talked to a lot of people about what was going on. I held it together pretty well until the end of the day. Wednesday night (before my first treatment) I had a meltdown after we went to bed. I was so scared about treatment.

I try not to let my mind go to that dark place of death, because I don't want to cloud my positive thoughts and energy. It's hard not to. I think I may need to join a support group. A Sammy person I know, who has cancer, has invited me to hers. I think I need to do something. It's a lot to handle, and only people who have been through it can truly understand. Not that friends and family don't listen and hand back comforting words. We couldn't get through this without it. Michael, too, may want to find a group. I can't know exactly what he's going through, as I am on the opposite side. We talk about our feelings, but there is a piece missing that we each need to find.

Thank God for Ambien. The little white pill that lets you put your fears to rest for a few hours. (I don't use it all the time, just when I REALLY need to sleep and can't.) Don't try this at home without a doctor's permission.

Notification

I spent most of the weekend and the beginning of the week talking to friends, family, and coworkers. I've been overwhelmed at the level of support, encouragement, and positive mojo that's come my way. It's been amazing. I'm really glad that notification is just about done. I've never caused so many people to cry. But we've cried together, and I've never heard 'I love you' or said it, as many times as I have over the past few days.

Don't forget to say it. It's important. I heard it from people I was surprised who said it. It's been a learning experience for me. Don't just think it, say it. It doesn't matter whether they're family, lover, friend, or coworker. It's been an amazing lesson.

To anyone who is reading this, 'I love you'.

Phone Calls

I've made a bunch of phone calls today. The hardest one was to my mother whose husband is fighting prostate cancer that decided to come out and play. I decided that I should just keep calling people. I wanted my close friends to hear it from me.

I didn't call cell phones because I didn't want to catch anyone driving and cause an accident. I've had to leave a few messages which I'm sure don't sound good. I can't tell people in a phone message. It's just not right somehow.

Is Ignorance Truly Bliss?

Thursday and Friday I didn't feel well and stayed home. My upper abdomen was pretty uncomfortable. Due to the illness or to stress or both, who knows. I spent the two days starting and finishing 'Dog Days' by Jon Katz, a nice book about dogs and animals. It was a nice diversion.

It's hard having your life on hold. I was terrified of knowing what could be the worst news of my life, yet the not knowing was so hard.

We got to the Dr. and he had just gotten the final pathology reports in. It wasn't the slow-growing pancreatic cancer we hoped for. It was the nasty version, Stage IV, that had spread to the liver and might be lurking elsewhere as well.

Through my tears and shock, we asked questions and listed as best we could to what he was telling us. Without treatment I'd go about 3 months. With treatment I might last up to around a year year. I'm not ready to go, I'm not going to sit back and wait.. So we discussed treatment.

Treatment involves a once a week infusion of a drug I don't remember the name of. Also there is another drug taken in pill form. The first makes you very tired, the second can give you acne. So much for the nice complexion I've had all my life. I will get a bone scan on Tuesday to see if there is anything in my bones, and then go to 'Chemo Class' where they explain how all this is going to happen.

Communication

As we were going through the 3 weeks of tests, scans, biopsy, and worry, I elected to tell only one of my sisters and my father what was going on. It was difficult knowing that I probably had cancer, yet didn't have any final information. I just couldn't tell a lot of people, because I didn't know what to tell them.

This got in the way of my sisters and I planning a trip to Minnesota to see my mother. This journey started right after we started talking about the trip. Not wanting to tell anyone else, I said something vague to my other sisters that I had something going on and wasn't sure about dates. I was hoping that they could trust me and that I'd have something to tell them--one way or the other--soon.

Unfortunately, it was misconstrued as a control issue. [I am anoldest child...] By not at least telling them I had a medical issue, it was easy for them to come to their own conclusions. I guess I didn't trust them to respect my desire for not wanting to talk. In reality, I should have given them some information and known that they would have waited until I had something more to say.

There are always lessons in communication to be learned. No matter how old we get, we are still so good at poor communication. I hope to continue to improve in this.

The Start of the Journey

This journey actually began on 2/24/08. I have been writing in a notebook, so am going to transfer that to the blog. Our rescue dog Molly died unexpectantly, suddenly, and quickly on that Sunday afternoon. We were shocked and devasted. Molly was a special dog whom I had first fostered and then adopted. She came from a nasty puppy mill and was unsocialized and afraid of the world. In the 5 years she'd been with me, she made much progress in dealing with her fears and issues.

Over that weekend, I'd had some abdominal pain (the second bout) that I thought might be gall stones. So the next day I made an appointment to see my PCP. She ordered bloodwork and an ultrasound was scheduled for the following day. The technician kept 'marking' things on the screen and asked me if I'd ever had a CAT scan. I didn't get a good feeling from that.

Later that afternoon, my Dr. called and said that they found spots on my liver and that it could be cancer, so I needed a CAT scan right away. Also, she made me an appt with an oncologist for the following Monday. I had been on my way to have dept birthday cake, so was in complete shock at how my day had just flipped. I felt like I was in a different reality. I had to drink 2 bottles of barium (I won't even go into the details of the after effects). After the scan we waited in the Imaging reception area for the Dr. to call. Things didn't look good. I made an appt for us to see her on Friday for a preliminary report.

I did a little research on liver cancer. Unless you've got cirrhossis or underlying liver disease, the liver doesn't get cancer unless it's spread from somewhere else. I was officially scared. Until our appt, I tried not to think worst case--it was hard.

There was what was likely a primary tumor (~3 cm) on my pancreas. There were multitudes of lesions on the liver, both lobes. She ordered more bloodwork and gave me a prescription for Xanax should I have any anxiety. Maybe just a little. I went back to work and told my boss. I said I really didn't think I could work the rest of the day. She told me to go home and take Monday as well.

We tried to stay busy through the weekend. I told my sister Maria and my Dad. Also, a friend at work knew because he happened to come into my office right after the first phone call from the Dr. while I was trying to assimilate the information I'd just been given.

On Monday, 3/3/08, Michael picked me up from work and we went to the cancer center which is down the street from where I work. The oncologist is probably in his late 30s, he seemed very nice. He didn't come in assuming that he knew everything about me. He wanted to know what path I had taken to get there. He showed us the CAT scan and explained what we were looking at. A tumor at the tail end of the pancreas and at least 20 lesions on the liver. He also did a breast exam.

His hope, because I hadn't lost gobs of weight and didn't really look sick, was that it was a slow-growing, hormonal-driven cancer. He ordered an octreotide scan, which involved me getting an IV of radioactive material and then at least two nuclear scans. It scanned me from head to mid-thigh and then around my chest and abdomen. It was actually pretty peaceful and I could have fallen asleep. After the first scan, I had to do a bowel prep. This one wasn't quite as bad as the one for my colonoscopy. At least I won't have to have one of those again. But I did have to bathe and groom my show dog that night for a trip to Kansas with my breeder, so it made for a looong night.

Then I went back for my second scan, and was told I didn't need to come back, they got everything they needed. The Dr. also ordered a needle biopsy of a liver lesion. It was scheduled for Monday 3/10/08. Oh, and then there was that 24-hour urine collection which I did on Sunday.

The biopsy involved going to Imaging--they would do it with the help of a CAT scan. I had my own nurse. The radiology tech was the same one who had done my CAT scan the previous week. The radiologist assured me they had all done hundreds of not thousands of these and they were a good team. Between the Versed and Fentanyl I don't remember anything after they put the needle in my back to numb it. I woke up about an hour and a half later on my side, and then could roll onto my back for another hour and a half. The procedure was easy. The waiting was hell.