June wrap-up

I thought I'd close June with one more post. I didn't realize until today how much more I write when I am not at home. I guess at home I have so much to distract myself with that I don't spend a lot of time thinking about what is going on or how I am feeling. I do know that I have felt pretty darned good here at home. With Mom here, I have wanted for nothing, and even got a few welcome surprises along the way.

One of those surprises was a new breakfast area at my house. Mom moved my furniture off the back patio, cleaned out my garage, and set things up so that if I want to eat breakfast outside, I can do it without fighting the dogs for my food. We ate out there this morning, the first day in nearly two weeks where it was still a bearable temperature at breakfast time. It was so pleasant! The sky was overcast and there was a nice breeze while we ate and watched the neighborhood wake up. Today's weather has been such a change from the white, flat, dry heat we have been having that it made this morning's breakfast even more special.

After breakfast, we had to get Mom to the airport and ready to head home. It was bittersweet for me. Obviously I want to feel well enough that I don't need someone here looking after me, but it means that Mom is gone. I feel great, and I've already talked to Mom once tonight, but my house is an odd kind of quiet...lonely. After dropping Mom off, I had a checkup with the doctor who did my first surgery, and she says I look healthy & well. I'll take that! This evening, my friend Jennifer drove down from Waco for dinner. It was so nice to see her, and even though the evening was pretty low key, I daresay we'd do it again.

Now, I am wondering what to do with myself for the rest of the week. I have a couple of library books to read, and one DVD to watch that is also on loan from the library. I am planning a small get together for Independence Day on Saturday evening, but other than that, I don't have a lot going on. Since my last treatment I have felt pretty well overall, but on Sunday I think I was asleep longer than I was awake. I didn't think I would be able to sleep on Sunday night because I slept so much during the day, but I rested without any problems. I guess what I hear about fatigue being a side effect of chemo is true after all. I fully expected to have lost my hair already by now, but so far I haven't. I tried on my new hat for Jennifer tonight, and we agreed (again) that it was cute enough to wear even if I keep all of my hair.

I have had lots of great mail and phone calls this week--reminders that so many people are loving me and praying for me from a distance. I feel that love every single day. Judy & her kiddos sent me a package with treats, books, and other fun things. I am still smiling as I sit here thinking about it. I am so loved!

Have a great day!

Home

Home feels so good. Unpacking, opening mail (even bills), and simply eating a meal at home are so comforting. When the mail includes so many prayers and well-wishes, it is a whole new level of comfort.

I am so blessed. Thanks for being part of that blessing.

I promise

I promise (hand over heart) I do know how to write a short, focused post.  I will try to do better (and to not start posts when I'm being medicated!).

End of round 1

I'm hanging out at MD Anderson for the evening.  I know, you should all be jealous!

Mom and I got here for my final treatment of my first round this afternoon, and we're just relaxing in an infusion suite.  Mom is working Sudoku, I am catching up on Facebook, and we're both listening to the TV from the next suite.  Very calm.  

This week has been mellow and I have felt better each day, what a blessing!  I didn't realize it, but Sunday and Monday I was fatigued.  When I felt so much better on Tuesday and Wednesday, I had a kind of "duh" moment when I realized how I'd felt wasn't a new normal, but instead side effects from the chemo.  I am so blessed to know that the days of feeling icky definitely have an end date.  I won't indefinitely feel nauseous and exhausted.  Nice!

Here are a few high points from the week.  We have visited Greg, Missy, and the girls a couple of times.  I love it that Lucy knows me by name now, and Maggie wants to kiss me when she sees me.  Mom and I are planning to cook lunch with/for that crew tomorrow.  "That crew" has grown!  Kelly and three of her kids came for a visit to Houston and are staying w/Greg & Missy.  It was so great to see Kelly and the girls that I didn't even care if they got me wet when they hugged me.  Kelly & family will stay here until Saturday then go stay w/her sister in law who lives further northwest in Houston.  Mom has been getting to know her way around my neighborhood, as well as back & forth to Greg's.  It is so nice to have someone else to do all the stressful Houston driving.  Gotta love Mom!  We have done some shopping, some cooking, and a lot of great visiting.  I am amazed that I love Mom more and more every day, and that each day I feel like I learn some part of her life before I was a part of it.  It's awesome!  

I felt so good yesterday that Mom suggested we go out to dinner to celebrate.  I perused some online menus and had to choose between Cafe Express and a Mexican place called Escalante's Mexican Grill.  We ended up at the Mexican place and it was FANTASTIC!  I think I know where I get my tasted for carbs and guacamole--I inherited those rightly from Mom!  One recommendation--get an appetizer, then share an entree.  They plated our entree on two plates so we didn't have to scrape or split anything on our own.  Oh-and the tortillas are amazing.  Mom and I are now determined to make delicious homemade flour tortillas--do you have a recipe we can use?  

Today I had to have blood drawn pretty early, so after that was done we headed out to Greg's.  I actually got into the pool and got some sun.  We had yummy croissant sandwiches for lunch and I could have taken a nap, but just couldn't resist visiting with everyone else while they were swimming.  

Now, I'm waiting to get my next dose of chemo.  Right now I'm getting Benadryl in an IV, so if I haven't stopped making sense yet, I will soon.  This is the last item on our list for tonight, and we're planning to make lunch at Greg's house tomorrow, and then HEAD HOME!  I pray I will feel well enough to go to MY church on Sunday.  Will you pray with me for that?  Thanks for all your love & support!

Home again, Finnegan

I had a great day today.  Part of that could be attributed to the fact that it's the first in many days when I woke up in the morning and am going to bed at night.  None of this medicine from midnight to 4 stuff--no, thank you!

Mary headed back to central Texas today, in preparation for her flight back home tomorrow.  She left me safely ensconced at Greg & Missy's for a relaxing day of waiting for Mom to come back to Houston.  I snacked, I napped, watched a bit of TV, and played a few rounds of online Scrabble with my friend Suzanne.  At the end of the day I even got a giant bubble bath in the giant tub--no complaints from me!

Debby, Lori, & John came to Houston with Mom after Mary got home with the car.  (You see, my car has a defunct transmission, so everyone who's coming to look after me is, for now, in Debby's car.  Debby is driving the pickup truck that is usually Angie's, and Angie has the Saturn. How Ed is getting around is a complete mystery to me....farm truck, perhaps?)  

Anyway, everyone made it in just fine, and after folding the laundry that I had taken to Greg & Missy's to wash (thanks, girls :) Mom brought me back to the apartment.  Everything is unloaded & unpacked, plus the coffee is set up for the morning.  All we have to do now is turn the pot on, and we'll be set!  

All in all, it was a great day for me.  I am tired, and as my friend Mike often says when I ask how he is, "I'm better than some and worse than others."  I think that's a fair sum of the day.  Mostly, I'd say I'm way better off than most--thanks to all the love I'm getting from all of you.  I hope your Father's Day Sunday was awesome! 

Only Grace

Since mid-April I've had Matthew West's song, "Only Grace" in my head and I hadn't heard it, even on Pandora, until tonight.  I don't know what the lyrics are in the verses, but the chorus is a great reminder that we have "only grace, only love" and that it's enough.  Amen and amen.

It has been a tough couple of days.  Yesterday started out simple enough.  We had to get to the clinic around 8 am, get blood drawn, then meet with my oncologist.  That appointment went well, and Dr. Wolf hugged me as she left the room.  The nurse practitioner had a hard time finding the consent forms for me to sign, but we eventually got all that taken care of.  We were headed to the hospital around 11am to start chemo, or so I thought.  Mary went to the car, got our clothes & computers, I waited to get lab results (which I never got), then we headed for the hospital, sure we would be settled in a room by noon and ready to go.

Well, that didn't happen.  When we got to admissions, we were told that there were no beds on the unit I needed, and it would be "hours" before there would be a bed available.  When we tried to find out how many hours, we got a standard of answer, "it will be before 11 o'clock tonight, when our office closes."  Grrr.  I was irritated.   Mary tried calling our contacts at the clinic to find out what they could find out, but no luck--no one seemed to have any answers.  About the time I was about to blow a gasket, we had a little blessing.  My friend Kendall called.  She had just finished her appointment at MD Anderson and wanted to get together.  Kendall and her friend Lauren picked up Mary and me and took us to a great burger place for lunch.  Kendall has just finished 8 months of treatments, and was able to walk us through some best practices when working on admissions.  It was calming for me to hear that this wasn't a singular experience, but something that happens when the world's cancer patients who can get to Houston come here.  (Mary actually helped translate between the un-helpful admissions woman and a couple from Peru on a couple of questions.  You go, girl...at least someone is helpful!)  The population of the floor I'm on is typically 104-105% of capacity, which means the staff is always busy and juggling patients.  It was a great time for God to remind me that I wasn't the only person involved in this fight against cancer--there are other patients, medical staff, and families to consider.  It also served as a subtle reminder that whenever I finally did get admitted, to not take my frustration out on the nurses/staff.  The busy-ness of the floor meant that had had a full census of patients all day, not that they had been slacking off and just looking for something to do.  Lesson #1 learned.

After lunch, Mary decided that our best bet was to head back to the apartment, so that is what we did.  Admissions had my # and her #, so we could safely be 30 minutes away and still get to the hospital in plenty of time to "claim" my room when the time was right.  Thank God that was what we did.  It was almost 4 hours later that we got a call.  We ate, rested, visited, talked about our frustrations (and how we didn't want to make the other one suffer b/c we were both frustrated), and had some great coffee.  Much better than pacing around the crowded hospital lobbies, that's for sure!

When the call came in, we headed to the hospital and were settled in a room around 630pm.  7pm is shift change, so rather than try to get things started then, the nurse explained how things would work with our night nurse and started gathering materials we'd need for starting chemo that night.  She was very sweet, and I immediately was calmer about how long we'd waited.  Mary unpacked our clothes, organized the toiletries, and set out my Bible, some stationery and a few other things I requested.  The room is a bit small, but fits the two of us perfectly.

The night nurse came in and started to get right to work.  She started to check my record to find out what I'd need, and discovered that there was one critical lab result missing from my report.  I had to have more blood drawn and wait to make sure everything was where it needed to be.  Once the labs were drawn, the nurse started looking for the consent forms, and couldn't find them.   So, more waiting to sign consents again (sigh).  Then things could start.  One doctor had told us she thought chemo would start sometime between 3 and 4pm (which in the moment, sounded late) and the first drops actually started about 1205am Saturday morning.  

And drops they were...I had slightly less than 1 liter of the first med to infuse, and it took a whole 24 hours.  When they infuse other fluids, a liter usually takes about an hour.  I am now 26 hours past my start time, and the 2nd drug is almost finished being infused.  The first one went into an IV in my arm, and this 2nd one is being pumped directly into my abdomen.  Soon I'll get to spend an hour or two turning from side to side to ensure the medicine coats my entire abdominal cavity.  Fun.

To pass the time today, Mary and I explored the hospital.  We walked through the rose garden outside, got a free hat for when I start losing my hair (or even for now--it's cute), had a couple cups of coffee (sbux, of course), and got a free hair wash and style for me.  Mary also discovered the "cybercenter" where she faxed some stuff for free, and picked up a couple of movies for us to watch in our down time.  We also rested, ate 3 great meals, and had great care from our nurses and doctors.  For meals, we can call anytime we want and order whatever we want off their menu, and it gets delivered to the room within about an hour.  Mine is all free, and Mary's has been pretty affordable, unlike typical "room service" meals  Happily, most of the food has been tasty--way above what we were expecting for hospital food!  Plus, I am able to order enough to have snacks between meals.  As in the rest of life, smaller, more frequent meals are better for me during chemo, so I'm going to try to stick with that.  Anything that keeps me feeling good during this is what I need!

Sorry if this is too much information for one post, but it is 3 in the morning, and I don't have a lot of choices with what to do, so I thought I'd share everything (I skipped my bathroom breaks--you're welcome!).  Thanks for sticking with me through all of this, and letting me be humanly frustrated when things don't go the way I plan them.

I'll close with God in action in all of this, lest I forget...today Mary and I were trying to briefly explain to Judy what would be expected of anyone who wanted to come and stay with me during treatment.  Mary listed as a "bonus" that for admitting day, we simply need to call admissions once we are ready, then go do something fun and/or relaxing until they tell us our room is ready.  Less than one day, and she was already able to see how our toughest frustration is actually a gift.  

Thank you, Lord, for that perspective.

God is SO good

Tuesday and Wednesday were days between appointments.  None of us had anything planned those days, we were just rolling with whatever came our way and sounded appealing.  I had more residual pain from the surgery than I had expected, so we played it pretty low key for Tuesday.  Mom and Dad flew into Sugar Land on Wednesday and wanted to buy everyone lunch.   Everyone included Greg & Missy, Debby & Lori, Melissa, Lucy, Maggie, Mary, and me.  It was so great to see Dad and Mom (who's staying through the end of the month, at least) and to be able to answer Dad's questions about treatment, plans, housing, etc.  

Sometime during the day on Wednesday, Debby got a call from a church in Houston letting her know they had an apartment available and that we'd need to let them know ASAP if we wanted it.  Debby called me around 11am to let me know to call them.  I called the only number I had for the Church Apartment Ministry, left a message, and waited for a call back.  When the call came around 230, we were told that they had no knowledge of a place for us, and that it must have come directly from a church.  In a "Three Stooges" manner (gotta love cell phones!), 4 of us ended up driving about 15 minutes to see an apartment.  

This is where I really started to see God's hand.  Typically, the apartment would have been vacant and available about an hour before a patient and his/her family took advantage of having housing near the med. center.  We had more than half a day with an apartment sitting empty, and a volunteer from St. John's Presbyterian Church just waiting at the apartment for someone to come by and let her know they wanted it.  It is fully furnished, room for 4 to sleep, and only 6 miles from MD Anderson.  When we talked to Marie, the SJPC volunteer, she said that the only reason the apartment was still available was because her database was down and she couldn't update others to let them know it was available.  She said that must have meant God was holding it just for me and my family.  What a blessing!   If you'd like to send something to me directly, address it to me @ 5490 Braesvalley, # 369, Houston, TX 77096.  

Mary, Debby, Mom and I took a "test drive" to the hospital to see how long it would take us to get there, and somehow managed to get lost, even though there only appeared to be one turn between the two places.  We stopped for coffee after we found the hospital, then somehow managed to get turned around--again--on the way HOME from the hospital.  I was tired, hot, and frustrated, and I imagine Mary was as well.  Just when I think we were both about at our limits, I saw a sign for a Mediterranean restaurant I'd been wanting to try.  Mary pulled into the parking lot, and while I went in to order our dinner, she and Debby figured out where we were and how to get where we needed to go without any doubts.  When Debby asked what the purpose was of us getting lost, I told her that Mom needed to see that Mary and I could have some tension and still be all right in the long run.  God knows what we need so much more than we do!  

Today has been a different kind of day, and I'll write about it soon.  I'll just say this one thing, today is "my first day of chemo" and as of 515pm, I still haven't been admitted to the hospital.  More soon!

One word...

So, one word today, ouch!

The surgery to insert the port went fine.  Mary and I got to the hospital at the fresh hour of 530am, and I was being taken into surgery by 705.  Much more efficient than my last surgery, praise God!  I remember being sleepy, then being woken up, so all in all, the anesthesia team did an excellent job.  Recovery was quicker than I'd expected, and I was out of recovery by 10am.  In the time in between, Mary was able to get to the pharmacy to pick up the prescriptions from Dr. Wolf and I was able to do everything the recovery room nurse needed from me.  

The "ouch" comes from sore muscles on my left side.  Because the port/catheter has to go through muscle, I am experiencing muscle soreness I haven't felt before.  A reliable resource tells me that I should expect the soreness to last about 36 hours, and then I'll feel much better.  I am praying for the Lord's strength to sustain me through this, as it has through everything else.  

The medicine to treat the pain makes me sleepy and occasionally dizzy, so I'm going to sign off here.  I just wanted to give everyone an update on where I am today.  Thanks for the love and the prayers!

Stuff from Today

Busy, busy day.  Mary, Kathleen, and Jessica got here around 3 in the morning, I took Greg to work around 7, and had a full day of appointments.  Blessedly, the super-early morning appointments that I had originally scheduled were moved to later in the day, so I was able to come home and rest until about 10am.  Mary and I spent the day at MD Anderson, talking with the social worker, getting blood drawn at the lab, finding out about support groups, and meeting with the radiation oncologist.  

The big news of the day was pretty limited.  There is lots of support available to me and my family.  There was some question if there is additional testing needed on my lymph nodes.  One pathologist indicated there is reason for concern in that area.  The radiation oncologist recommended I ask my regular oncologist if I could be the focus of an inter-disciplinary panel. That means that basically everyone involved with my care would review my medical history and diagnosis to ensure everyone is on the same page with my care, and that everyone involved has input on the best next steps.  I guess that is one benefit of having a diagnosis that is unusual....lots of minds focused on care and treatment.  

Oh, and since I have two different types of cancer, I get two different ribbon/bracelet colors.  For uterine/endometrial I have peach, and for the ovarian, of course, I have teal.  They don't match,  just for the record.  I guess I'll just have to get over it.

Some other thoughts from the last week:  

I asked my stockbroker about options for withdrawing from my retirement account if I need it to pay for health care, and after he heard what I've been going through, he answered my questions, then asked if he could pray with me.

 I have some options for a place to stay in Houston, which is a big relief.  My church has people willing to help with finances so I can take care of things in case I lose my job.

 I asked my work about options for working part time, and won't have an answer until at least Friday.  

I still am not sleeping well, I think I need to get more active through the day.  Pray I continue to feel better so I can be more active.

I have a procedure scheduled on Monday, but won't know what time it is until Friday after 3pm.  

With Mary here, I am hoping to take at least one day and do something relaxing and fun before all the craziness starts.  

For right now, I'm beat, so I'm signing off.  I am sure there will be more soon.  

EDIT:  I wanted to add that my experience so far with MD Anderson has been great.  Every staff member I've dealt with has been very positive, very convinced we are going to beat this.  I have laughed with nurses and other staff more than I think is probably normal in a cancer treatment.  One nurse even told me she wasn't going to let me leave without getting a hug...I must just look like a hugger :)

Besides asking if he could pray for me, my stockbroker asked a question I don't think I've heard very much before, he said, "are you scared?"  I told him that in that moment, I wasn't, but overall I think I am.  To be clear, I am not scared of not being cured, I am confident in my doctors' plans for my treatment.  I am scared and worried about finances, health benefits, etc.  I am trying to hold on to what Greg said, though.  It was something to the effect that all of those financial worries are "small stuff" that are only going to be critical for the next 4-6 months. Instead of focusing on the worries, I need to stay focused on the big picture of healing and moving forward, and it seems I have been stuck in thinking about the worst-case scenario.  If you would pray with me, more than ever, that God really does have this whole situation in His hands and I can let it go, I would really appreciate it.  

The verdict is in

It is 317am, and I'm up for the 3rd time since I went to bed around 10pm. Gotta love hot flashes that are surgically induced! Hot flashes are a far cry from the "I'm cold" I've been saying for the past couple of years. Now I go from chilly, to sweaty hot, to freezing, all in the course of about 5 minutes--several times a day. It's like my own personal weather system!

Part of the reason I may be having a hard time sleeping tonight is because of my appointment yesterday. I saw an oncologist at MD Anderson (MDA) in Houston. I was half hoping she'd tell me that what was offered to me at Scott & White (SW from here on out) would be the same regimen of treatment she would recommend. That would have kept my life simple...uncomplicated. Um, yeah, that didn't happen.

Prior to the appointment yesterday, I'd already decided that if MD Anderson offered a treatment that was more aggressive, more cutting-edge, I was going to get treated in Houston. I mean, I'm only 36. If the next six to twelve months are more uncomfortable or irritating because of treatment, but it means I'll live 30 more years, I'd be a fool not to take advantage of that. I have had plenty of other opportunities to be foolish in my lifetime, and I didn't want this to be another one.

Here's what it came down to. SW said they'd give me 6 rounds of IV "the gold standard" chemotherapy treatment for my ovarian cancer. When we asked about what they were going to do about the uterine cancer, they said that this chemo would treat both. MDA said that they'd give me 6 rounds of chemo, plus radiation to treat the uterine cancer.

The chemo is not the same as what SW had to offer, instead it is more of a mixed cocktail. IV chemo will be on day 1 (currently scheduled 6/18) , intrapariteneal (okay, I don't know how to spell that, but I'll call it IP) chemo will be on day 2, then another dose of IP chemo on day 8, starting all three steps over on day 22. So, chemo is still every 3 weeks, just with multiple steps. IP chemo treats the ovarian cancer more directly, as it is pumped directly into my abdomen. Because the drugs used for ALL chemo are essentially poisons designed to kill any cancerous cells, I get that poison right on my stomach...fun, fun. For days 1 and 2, I'll be inpatient, but day 8 I'll be outpatient. It all sounds somewhat messy and complicated, but I'm young and smart (when I'm not on pain meds) and I think I'll be able to figure it out.

The next step is trying to figure out who I'll have with me during chemo. Several sisters and friends, plus my mom, have all said they'll be here whenever I need them. All along I'd thought they'd be with me in my home, and that was nice...I could go to my own room if I needed some quiet. Being at MDA or elsewhere in Houston is going to make those living quarters significantly different. I think my next step should be creating some sort of schedule. I know I won't want to be around many people, because my immune system won't be great, I could feel nasty from the chemo, and I'll probably be losing my hair. I don't see this as a great time for me to be sunny and loving others all the time. I suspect I'll want someone who'll read to me, make sure I eat, and won't annoy me. I have a pretty short fuse anyway, and I don't want this experience to remind people of my surly adolesence. God has changed my attitude and my heart so much for the better, that I don't want to ruin that by falling back into my own grumpiness. Pray about that, won't you?

Okay, it's well past the time I should be tired again. I'm going to try to go back to bed, but clearly I had to get some stuff out of my head. I officially have 7 days before things start being driven by my MDA schedule, so let's do something fun before then!

Monday, Monday...

I haven't been doing a lot the past few days, but I still feel like a lot has happened. First off, my mom is amazing. I have not gone hungry, or craved any silly little thing that she has not taken care of right away. Add to that that she has taken my wimpy little garden in my yard and made it look absolutely amazing. PLUS, she has done all of the laundry, dishes, and housecleaning. Is this what it is like to be an only child? I could not have imagined it.

Today has been busy-ish. I had to go to my doctor's office to have a mammogram and some blood drawn to screen for breast cancer. If she finds anything in the films or in the genetic testing, she is recommending some radical treatment to pre-emptively rid my body of breast cancer. You would think that would freak me out.

After worship yesterday, a group of my church elders prayed over me and for me. I could not have imagined how powerful that would feel, nor how calming it could be. I tend to cry anytime I hear someone pray for me, and yesterday was not an exception, but for once I was not crying tears of despair, but tears of hope. I had a certain sense that the reason the past month or so has not devastated me is because I have so many people praying for me, and so often. I get the sense that the odd moments I panic or get scared are the odd moments someone out there is not praying for me. They have been so few, and I am overwhelmed.

This evening I'm headed to Houston with my mom and my sister to get a 2nd opinion about treatment options from an oncologist @ MD Anderson. My appointment is tomorrow morning. If she offers some more aggressive treatment than what I've already learned about, I will probably get treatment there. If not, I'll stick with what I've learned about closer to home.

Thanks for praying to me, and reaching out to me, and just loving me. I know I'll continue to need all of those things!