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Celebration of Life

Friday we will be gathering to celebrate Jim's life.  For details visit the Lima Family Mortuary site.

We have already received a number of beautiful bouquets that have really lifted our spirits.

In lieu of more flowers, please consider a donation to the Monterey Bay Aquarium or the American Cancer Society, in James' honor and memory.

Good Morning, Goodbye.

Yesterday I had the joy and sadness of saying good morning to my husband Jim for the very last time.  Good morning, such simple words, yet as I spoke them, it felt like they were the most important words I could ever say.  For the past 17 1/2 years, I said good morning to this man every day.  I took those words for granted. For nine months we have fought side by side to battle our foe, cancer.  As chemo was successfully fighting the tumors, it also created opportunities for nefarious infections to take hold.  He fought bravely and well and in the end was able to die in peace and dignity, surrounded by love.  He was, and always will be, my love, my heart, my breath, my life.  

On Monday morning, Jim's breathing was improving and we were, as always, hopeful.  As the day ended, things, as they say, took a turn for the worst.  He was very agitated and just wanted to come home.  He was unable to get enough breath and we had to make the decision to intubate so he could have enough oxygen.  The thing we'd hoped to avoid was staring me in the face.  I looked in Jim's wide eyes and asked him if he wanted a tube down his throat so he could breathe.  Life wants to live.  He said yes.  So I said yes.

The crash team was awesome and let me stay at Jim's side, whispering all my love, strength and life into his ear, as they worked quickly and with precision around me. They explained every step as they went and treated us both with compassion.  They moved us down the hall, from Progressive Care to Intensive Care (ICU).  Then I started making some of the most difficult phone calls I've had to make.  We did not know how much damage had been done nor how long he would last.  Tuesday was an incredibly long day. When you are on a ventilator, they have to keep you sedated so you don't struggle  against the machine.  We were told he could hear us, but was unable to make any response.

Throughout the day I sought out our care team to get as much information as I could.  Since Jim and I knew intubation was a possibility, I knew the terms that were and were not acceptable to him.  If there was a way that being on the ventilator could give him the strength his needed to be able to come off it, it was okay.  But if there was no life without it, he did not want that.  So I asked some difficult questions and recieved difficult answers.  His lungs could not now or ever sustain life.

At one point I was alone with him and I read him some poems and prayers and promises.

I read a Buddhist prayer for dead and dying,

Oh Buddhas and Bodhisattvas abiding in all directions,
Endowed with great compassion,
Endowed with foreknowledge,
Endowed with divine eye,
Endowed with love,
Affording protection to sentient beings,
Please come forth through the power of your great compassion,
Please accept these offerings, both actually presented and mentally created.

Oh Compassionate Ones, you who possess
The wisdom of understanding,
The love of compassion,
The power of doing divine deeds,
And of protecting in incomprehensible measure,
James is passing from this world to the next,
Heis taking a great leap,
The light of this world has faded for him,
He has entered solitude with their karmic forces,
He has gone into a vast silence,
He is borne away by the great ocean of birth and death ..…

Oh Compassionate Ones, protect James, who is defenceless. Be to him like a mother and father.

Oh Compassionate Ones, let not the force of your compassion be weak, but aid them.

Let James not go into the miserable states of existence.

Forget not your ancient vows.

I read him the 23rd psalm.  I spoke sweet nothings, yet everythings, into his ear.  I also put on our song, took one hand in mine, put the other on his shoulder and we danced, one last dance. http://youtu.be/qQ-15YIvH5Y

His brother Mike arrived around 8pm and I was able to get the first solid sleep in days, knowing Mike was keeping vigil.  I fell asleep to the sound of him telling Jim stories, sharing memories.  I was gently wakened as my brother-in-law told me that our son, Bobby and his wife, Melinda, had arrived, close to midnight.  We held vigil in shifts throughout that long night.  Gratefully Jim kept fighting and was there for them.

In the morning, I shut everyone out of the room and with the sun streaming in and Keith Urban singing gently through my phone, I had the honor or bathing my husband.  It was incredibly intimate, sad, beautiful thing.

At 10 am we gathered at his bedside and had the ventilator tube removed.  It's is a very managed process where Jim felt no panic or pain.  Mike, Bobby, Melinda, Mom, Bonnie and Linda were there with us.  We were able to say goodbye, knowing James could hear us as we lifted him up. From Pittsburg , PA, my brother David said a prayer for him and sat vigil with us, via my phone.  

James' was a life well lived. 

What day is it? Where are you?

Jim has been asked that question too many times in the last 24 hours and he's getting sassy.  He answers in ways that would make Uncle Art proud including, "Today", "we are here", "I am in bed", "it's time for quiet", just to name a few.  When the nurse asked where she should place the 02 sensor, his response made me just about bust a gut.  It is good to have things to laugh about.

Yesterday was pretty rough in the breathing department. We moved to a new room in progressive care unit so they can give him higher volume of oxygen. The o2 units on this floor have a higher volume throughput. He continues with breathing treatments every 4 hours and they've added a couple tricks to enable him to cough up the aforementioned gunk.

Today we had a better day, although he's still not hungry. The stuff he's coughing up tastes ( and smells) horrible so no real appetite. He'll have another broch, tomorrow, but this will be a simpler procedure just sucking (auctioning is the technical term) and rinsing to clear out gunk. We hope this will help the lung to open up.  It is likely he'll have a similar procedure later in the week.

It's been wonderful to see Marie, John and Gail.  Marie's experience in the medical field as well as her clarity and compassion have been invaluable, calming and centering.  Today when I introduced her to one of the many professionals to traipse through our room, I said, "this is my friend Marie from Chicago," then gesturing to the doc, I said "this is the hospital oncologist."  He interpreted this to mean that Marie was an oncologist so the rest of the conversation was between the two of them. It was amusing, yet informative.

Tomorrow morning is an early start with a 5:00 am x-ray, 7:00 am visit with the hospital pulmonologist (Dr. Krishna is off ...imagine, on a holiday (which btw neither of us remembered it was a holiday tomorrow)), then the big suck at 7:45.  Both Marie and Linda will be with me to give me tons of support. I'm hoping for a good night's sleep for both of us.

Please continue to keep us in your thoughts and prayers.

Valentine's Day

I'm struggling to come up with the words to write tonight.  As I sit next to the bed of the man who has, in less than two decades, become my world, I wonder, "how did I get here? This is not my beautiful life". Ah, but it is.  I woke up this morning to my valentine lying in his hospital bed and I knew there was no where else I'd want to be right now, than here with him. For better, for worse, for richer, for poorer, In sickness and in health, I am my beloved's and he is mine.

After a restless night with a variety of interruptions, we prepared, NPO, no coffee, nothing to eat for a 9:00 am-ish bronchoscopy. James is becoming quite the favorite in the endoscopy center!  The procedure was quick and initially encouraging.  Dr. Krishna suctioned out a lot of gunk and sprayed the  inside of the lung with 'mucomist' which is some medication that helps the lungs cough up the gunk.  Essentially, he has to clear the gunk out so his aveoli can process oxygen.  Dr. K informed us he would not do another bronchoscopy soon, to give Jim's lungs and bronchial tubes time to heal (and not swell).  When we checked in, we'd been told he might have to do up to 3! He said if the X-ray looked good, we could go home tomorrow morning. Beach house, here we come!

Ah, not so fast.  When I got to go into recovery, the nurses were having trouble getting Jim's oxygen (o2) levels up. After his X-ray they gave him the treatment - the breathing treatment that is, which really helps his oxygen intake.  Dr. K came to check in and the results of the xray were disappointing.  Jim's right lung is not fully inflated, it may have been collapsed from the trauma the lung incurred in the previous bronchoscopy.  So we will be staying here a few more days.

When we for back upstairs it took quite a while (well, it seemed like a long time) to get Jim's breathing to acceptable o2 levels.  He is now breathing with just the cannula (the little tube that plugs into your nose:). He still thinks he can take it off (usually in his sleep) so when the alarm goes off, I pop up and put it back on and get his breathing settled.  We are obviously concerned about any damage being done by low o2.  

And so, the fight continues.  Our old foe brought in reinforcements in the form of opportunistic infections who are undermining the very air we breathe.  But our fight is not over.  We continue to draw strength from each other and from our circle of care. We are not defeated nor deterred.  Love will win out. Love is the answer.  

Letting the days go by, into silent water 
Once in a lifetime, water flowing underground 
You may ask yourself, what is that beautiful house? 
You may ask yourself, where does that highway lead to? 
You may ask yourself, am I right, am I wrong? 
You may say to yourself, my god, what have I done? 
Letting the days go by, let the water hold me down 
Letting the days go by, water flowing underground 
Into the blue again, after the money's gone 
Once in a lifetime, water flowing underground 
Into the blue again, into silent water 
Under the rocks and stones, there is water underground 
Letting the days go by, into silent water 
Once in a lifetime, water flowing underground 
Same as it ever was, same as it ever was, same as it ever was, same as it ever was 

~Talking Heads, "Once in a Lifetime"

Second verse, same as the first

Here we are again, another stay in the hospital, this is three weekends in a row! We are feeling pretty frustrated and discouraged. It is pretty scary to be spending this much time in the hospital. However, on the other hand, we are hopeful, yet again. Because at least we are getting the treatment we need.  We are so grateful for the excellent care we have gotten (from everyone except the doc we fired). We are grateful for insurance, social security and disability payments. I am grateful for every moment we have together, and we are incredibly grateful for the love and support of our family and friends.

After getting trained and up to speed, with Linda's help and encouragement, on the at home IV treatment, we got an email from Dr. Wong telling us that, after looking at the CT results, he saw the infection is more involved than he thought, so he wanted us to see Dr. Krishna again to see if there is more we can do besides the antibiotics and breathing treatment.  So I called Krishna's office yesterday and was told he could see us on the 27th. I don't think so. So I went into 'mama bear mode' and explained, politely, that this was unacceptable.

We got a call this morning that Dr. Krishna could see us at 1:30.  So I ran off to do some errands and was gone about an hour when I for a text that we were checking in to the hospital at two.  It seems that Krishna and Wong got together and decided that at-home treatments were not going to be enough to stop this infection.  So here we are again.

Jim is sleeping now, getting his usual anitibiotics and breathing treatments as well as two units of blood, O positive, of course!  Not just a blood time but a prayer.  We are hoping the whole stay turns out, oh, positive!

Tomorrow morning Jim will head down to get his first bronchoscopy of the week.  No one has told me exactly why, so I am making up a plausible reason; that Krishna can suck out as much of the gunk and infection that is causing all that trouble in his lungs.  Hey, it seems reasonable.

Dr. Krishna is great about communicating directly, so I am sure I will have more to report tomorrow.

Thanks Joni, for today's quote:

Monday, Monday

We get to go home today and see the stars of Dharma!

Dr. Wong just left and Jim had his last breathing treatment for our stay.  It has REaLLY helped being on a regular regime so I'm hopeful that he will now stay on schedule with his treatments at home.  We were just talking about some app or something that can help us track when he's supposed to do what.  It's. Good thing we both have project management skills.  We'll have an interactive calendar up and running in no time!

Jim will get one more dose of the IV amoxicillin here at the hospital around 11 (they are on their own time zone here) and then we hope to go home!  The RN case manager just stopped in and said it might have to wait until after the 3 o'clock treatment (sad face). 

Once home, Linda and I will get trained on the IV pump by the home health people, who deliver all the equipment (down to gloves, etc) and will deliver fresh IV every three days (note to self- one more thing to go on the calendar).

I'm planning to back to work on Tuesday but have the sick time if I need to change plans. It's great to have such a supportive team at school to keep things running as smoothly as possible.  I'm also able to communicate with my students and it's been so sweet to get their messages of encouragement.  The other day they were trying to guess some exciting news I had; 'it's better than this, but not as good as that.'  One of my kids guessed, "Mr. McConnell doesn't have cancer anymore!!" I told him that would be the best of all possibilities, but no, it was just that we got to try out our new 3-D printer, which by the way, we pretty amazing!). They make me smile every day.

Quick update

After a restless night, we had a visit from Dr. Wong and decided that Jim will be discharged Monday.  He's running a slight fever and they want to give him a chance to adapt to the new drugs.  I asked when he might start feeling better, and Wong suggested we measure in weeks not days.  We'll hopefully learn more from the infectious diseases specialist today.

So Jim is the patient and I need to be patient, too!  Not necessarily one of my biggest strengths.

Finally, a solution....

Here we are, back on 4B at El Camino Hospital.  The picc line is in. It is basically a very thin line that delivers IV meds into the bloodstream.  Jim will be getting a small pump that he'll wear in a 'fanny pack' which will automatically deliver the needed antibiotics 4 times a day.  I'll only need to change the 'bag' once a day, when I get home from school.  The meds and pump are all scheduled to be delivered the day he goes home.  I am still hoping for Sunday, but everyone here keeps saying Monday.  We'll see about that.

When I say everyone, I mean it. It's been quite a parade! They were right ready for us when we got here about 12:30. The RN and CNA got all of Jim's vitals, hooked him up to oxygen and the "picc lady" was here and gone by 2:30. The RN case manager dropped in to give us the plan, as well as the Oncology doctor on duty.  We just met with the representative from the specialty infusion company that will be delivering all the supplies for home and training us how to use it all. Later the Infectious disease specialist who is coordinating all of this will pay a visit.  Oh, and Jim got a late lunch delivered.  So quite a busy day so far!

The knowledge that we are taking action to finally relieve the debilitating cough and chest pain has us both feeling upbeat and encouraged.  

If It's Not One Thing, It's Another

The great news is that his onco doc is ecstatic about the cancer, however the infection James has is brutal. not quite flesh eating but bad. 

He has actmumycetes and aspergillis and will go into the hospital hopefully tomorrow (they are full because of flu season) to have a pic line put in. He'll be on a pump delivering four doses of iv antibiotic each day for the next few weeks at least. Then he'll be on oral antibiotics for 6 months at least. The hope is as the drugs take effect, the coughing will get better and maybe off O2. If they can get him in early tomorrow, he'll be home saturday morning. If he doesn't go in until later, it might take a while to get everything set up, so he'd come home Monday. 

From the procedure last Friday, it appears the chemo has been very effective in killing his lung tumor.  They'll do a CT scan in the hospital then another one in 4 weeks to get a sense of how things are maintaining. Once the infection is under control, we'll talk about restarting chemo.

As always, your prayers, thoughts and support are so important and valable to us.

Every Breath is a Second Chance

I'm trying to gather my thoughts into coherent words, sentences, paragraphs.  There is so much in my head right now that I'm not sure where or how to start. 

Friday we were scheduled for a bronchoscopy with ultrasound and biopsy to get a better picture of what was happening in Jim's lungs.   For the past few months his coughing has gotten worse, almost debilitating. Dr. Wong wanted to find out is it a lung infection (untreated since his pneumonia??) or simply a progression of the cancer.

We had an appointment two weeks ago with Dr. Chausow.  It was unsatisfying at best. "Well," he said, "that stuff you're coughing up might be an infection, or you might just have to live with it."  He did NOT inspire confidence nor did he share our fighting spirit. We fired him.

Finally this past Tuesday, we got in to see our preferred pulmonary interventionist, Dr. Ganesh Krishna. 

Research tells me that Ganesha is widely revered as the remover of obstacles, the patron of arts and sciences and the deva of intellect and wisdom. He is also known as the god of beginnings. Krishna is portrayed in various perspectives: a God-child, a prankster, a model lover, a divine hero and the supreme being.  Given the etymology of our doctor's name, and what he has done for us so far, we really like Dr. Krishna.  Dr. Krishna was the one who did the earlier bronchoscopies and identified the tumors as cancerous.  Which may seem like a reason NOT to like him.  However his intelligence, professionalism, compassion, and kindness won us over almost immediately. 

He scheduled Jim for the procedure right away.  So Friday Dr. K went in and took a look around.  He found a lot of dead cells and essentially irrigated the right lung area with saline solution to clean it out then also biopsy-ing 3 sites.  The tissue was sent to cytology and to be cultured, to find out if there is cancer present and also to identify the infection.  His visual inspection led him to believe there is ...wait for it... much less cancer in the lung that they expected to find!!

Frankly, this didn't really, and hasn't really, had a chance to sink in yet.

As Jim was waking up from the procedure, it was clear that his lungs were not up to the task of taking in enough oxygen.  Every time they took him off the O2, his numbers would drop into the dangerous range.  Dr. Krishna decided to keep him in the hospital overnight to see if the lungs could recover from the procedure. As we want into the next day, it became clear that the lungs will need more time.  So in order to be discharged, we needed to get oxygen machines.

We waited about three hours for the travel unit to be delivered to the hospital and once we got home, they delivered a home unit.  A new adventure, and something new to torture the dog with.  I have to admit, I am nervous about the whole oxygen machine thing,  I was joking with Jim and Bobby about turning off his oxygen when he misbehaves, but it am a little scared that I might do something wrong.  The consequences just got more serious.  

So back to the cancer.  What does it mean, that he didn't see much cancer in the lung?  We have a follow up appointment with Doctors Krishna and Wong in the next week and we hope to have some real news to celebrate!