Doctor! Doctor! Give me the news…

My last post was full of downers of self doubt and sadness, so I thought I would post something upbeat for the holiday weekend.  My family is vacationing with MaryBeth’s family (parent’s, siblings, sibling’s spouses and most importantly for MaryBeth, sibling’s newboarn infants).  MB loves to hold and play with babies, so she has a 2 to keep her busy this week.  It’s was great to watch her with them yesterday as she had a HUGE smile on her face just holding the baby and letting it fall asleep in her arms.

Healthwise, I met with Dr. Kauh on Thursday.  The news wasn’t great.  Essentially, we both agreed that I have worked through 3-4 treatment regimens to slow down or stop my tumor growth and nothing has really worked.  My tumor is now a cm smaller than the original tumor and is growing around and getting tangled up in some very delicate arteries.  Dr. Kauh is going to get me into a Phase IB clinical trial which will look at the potential efficacy of a new drug for treating cancer (they are not sure exactly which cancer it will help: pancreas, thyroid, or lung).

The hope is that this experimental drug holds some promise, but if now, the next step would be to set up home hospice care.  Essentially, the hospice workers deal with the issues surrounding people who are dying (not that I am planning on doing so in the near future, mind you).  Instead, they would come by daily (or more if needed) to check on me, provide medication as needed and all in all just be supportive of the transition we are going through.  One benefit is that MB would have to worry less  about taking care of me, as the hospice nurse would be able to take on someone of those duties, leaving MB and I more time just to enjoy being together.

A friend of mine, with whom I was talking about this yesterday, boiled it down for me.  If the Phase IB trial doesn’t work, we’ve essentially exhausted palliative treatment for me.  I have no sense how this will affect my prognosis, but truth be told, I have too many trips and plans in the works for me to die any time soon.

Next month, MB and I are traveling to DC for PanCan Advocacy Days.  I was going to go by myself, but MB felt it would be helpful to have someone there to look after me (not to mention that she is committed to the cause, too).  In July, the family and I will be flying up to NJ to visit with my mother and attend her annual blue berry festival.  For those who are long time readers of this blog, you may remember that Mom owns a blue berry farm, and she has a party each year at which she invites friends and family members to come pick blue berries and enjoy in some revelry.

In August, MB and I decided to join my family in Wildwood NJ for the annual Hamburger family get together.  We have been unable to attend for years and years because the trip to the beach occurs the week after school starts for our kids and we couldn’t see pulling them out of school to go to the beach.  This year, however, given the situation, we thought we could pull the kids out so that we can all go join my family and my step mother’s family at the beach.  Sometimes special circumstances call for special action.

So as you can see, we have a lot to look forward to over the summer.  I’m getting excited about all the stuff coming up.  And we are doing all this to continue to make memories that my kids can have of me when I am still generally healthy.

This past week was horrendously busy.  It doesn’t sound like a lot, but I worked extra long days for much of the week and I am exhausted.  Last night I think I ended up going to bed before 8p because I was so tired.  I hate that my disease continues to affect me so that even simple tasks (working, driving, etc.) wear me out.  I am so glad that my supervisors at work understand my situation and have encouraged me to take care of myself (e.g., work for a long as I can and then go home).  It is hard for me to accept the reality that things are only going to get worse, with me having less and less energy which will impact all aspects of my life.  I miss being more involved in Karate and Scouting, but I just do not have the energy to do either, really.

As much as this posts sounds like I’m complaining, I’m not.  I getting used to my “new normal” reluctantly.  I’m getting used to it, but that doesn’t mean that I have to like it.

Sorry for the long ramble of a post.  I will post more later.  But for now, the day is just starting out, it’s sunny and warms outside.  I’m on vacation with my family and MB’s family, and things are good.  Much to be thankful for today.

Thank you for all your well wishes, thoughts, and prayers.  I say it all the time, but I truly mean it.  I love you all and thank you for your support and love.

Merle

Fear

Last week, while I was in the hospital, I talked with a very good friend from high school about how I was dealing with current situation.  Once I got over my brief crying spell, she asked whether I was afraid of the future / my cancer / etc.  I am not sure I am afraid of what will happen to me, but more how my impending death will affect my loved ones.  I’m sad that I will likely not see my children graduate from high school or get married or lots of other life milestones.  I know that I am really getting tired of being sick all the time.  I know that it is harder and harder to maintain a positive outlook.  But I’m not sure I am afraid.

I think my fear will increase, I think, as I got to a time when the disease progresses further and my behavior is more and more restricted and, truth be told, I get closer and closer to dying.  MaryBeth and I started having the hard discussions surrounding things like what I would like to have during my memorial services; how I want to have my death handled; etc.  I think that the reality of my situation is solidifying.

My church is in the process of calling a new minister and Rev. Jan seems wonderful and I would be surprised if she is not called to serve.  MaryBeth had a chat with her the other day and it turns out that our interim minister (Rev. Roy) works until the beginning of July and Rev. Jan would start around the beginning of August.  Apparently, Jan has already spoken with other UU ministers in the area, recognizing that I may need  the services of a minister this summer (hopefully not).

In the meantime, the family and I are still planning on vacations and trips to continue to develop family memories, trying to behave as normal as possible.

I still get nauseous, I continue to have aches and diarrhea, and the fatigue is still very present.  I am beginning to have more and more aches and pains as the days go on, so the symptoms of the disease are becoming more prevalent.  Who knows what the future holds.  My tumor now is almost the size as the original tumor, but the one now is surrounding the base of the mesenteric artery making surgery impossible.

I am dealing with the edema I’ve been experiencing by wearing compression stockings.  I have a new appreciation for what women go through when wearing tights or pantyhose.  I still feel like I am retaining water, but that doesn’t seem to be a concern for my doc at the moment.  I’ll see him again in a couple of weeks and we will re-assess where I am, how I am feeling, and what treatment options are still out there for me.  In short, I keep plodding along.  I’m not giving up.  I’m in this fight to the end, it’s just that as death become more concrete and less abstract, my outlook on life has shifted.

I know for certain, however, I would not be able to face my future without friends like you all.  Many folks wonder what they can do to help, but you know what, just being there, giving me a hug from time to time, and checking in on me (showing they care) is a wonderful help as I go through this adventure.  As always, please continue to send your positive thoughts and energy.

Sorry for my incoherent ramblings.  Thanks for reading.  More later…

merle

 

Quick Weekend Update

After being discharged from the hospital on Tuesday, I have been taking Cipro to continue fighting the E. Coli. Things seem to be going okay on that front.

I had an appointment with Dr. Kauh on Thursday. On top of everything else, I was again anemic and needed another couple of units of blood (I got them on Friday).

While I was in the hospital, the docs ordered an MRI to make sure there wasn’t an abscess in my stomach (there wasn’t), but it turns out that my tumor has grown again. It is now 5.1 cm and is encompassing several of the small arteries in the area (further evidence that this tumor is non-operable.

It’s a little depressing that nothing seems to work to slow down or shrink the tumor (though, Dr. Kauh did again emphasize that I am lucky to have a lazy tumor). We may try me on a Phase I clinical trial of a drug that may help. Unfortunately, Phase I trials are all about toxicity levels and less about effectiveness of the drug.

In the meantime, I keep plugging along and fighting the good fight.

Thanks for your support.

Merle

Sprung…not so fast

“All of you who have recently been discharged from the hospital, take 1 step forward….not so fast Hamburger!!”

Apparently, the folks at Emory Hospital missed me.  I just got a call from one of the doctors there and it seems that there was some bacteria growing in the blood cultures they took on Tuesday when I was originally admitted.  Because there is a bacteria growing in my blood, the doctors wan to re-admit me to the hospital; having a bacteria growing in your blood is not good, it would seem.

My boys have a graduation ceremony for a Coming of Age program they have been doing for the past 9 months at church.  While the doctors would prefer that I go to the hospital earlier rather than later, my plan is to hold off so I can go to the boys graduation celebration and then head to the hospital.

Aren’t you all jealous of me?  All this time I’ll be spending in the hospital?  Some people have all the luck.

More later.

Merle

Sprung

Just a quick update…the docs sent me home last night. YEAH. They did not find any infection, but just to be sure, they sent me home with Ciprofloxin, a general antibiotic just in case they missed something.

I have to say that I did not miss being awakened in the so some nurse could take my vitals or collect some blood. MaryBeth offered to do it form me (we do have an electronic blood pressure cuff). As much as I appreciate her special offer, I told MaryBeth I really did not need her to do so (actually, I used several choice expletives that I cannot repeat in mixed company).

More later.

Merle

Being cold

I’ve written before that I have been cold more often than not, largely due to my loss of weight.  I’ve also talked about going into work as much as possible.  Well, this past Tuesday, I went into work but only made it half a day before I was feeling too miserable to useful (so I went home).  Around 4p, I started shivering (out of no where).  I was so cold that I went upstairs, got in bed, under the covers, and tried to warm up.  I was less than successful.

I went down for dinner and continued to shake more and more.  Finally, MaryBeth went and took my temperature twice (99.7 and 100.8).  Our oncologist said if my temperature ever got above 100 to go to the emergency room.  I thought MB was being silly, but when I got to the ER, my temp had spiked to 105.   Apparently, this is not good because I was taken back to a room immediately, they put cold compesses on me, and put in 2 IV lines.  Three hours after entering the ER, I was in a hospital room and have been here since.

The doctors are looking for and infection, but have not been able to find anything yet.  So I sit here at Emory, get broad spectrum antibiotics every two hours.  Meanwhile, I have been catching up on my sleep.  :-)

My temp is hovering right around 100 at the moment, but there is talk that I may be able to go home tomorrow (we’ll see).  Just wanted to bring you all up to date.  You know, when I was on an all liquid diet, my nausea was almost non-existent.  Now that I’m back on solid foods, the nausea is back; talk about a trade off.

That’s all for now.  More later, perhaps.

Merle