TOO MANY GOODBYES 

why do we love to only lose

why do we hold dear a parent
or a brother or a sister
when we will have to say goodbye
way before our hearts are ready
why do we hold a lover
and give our very souls to another
only to lose them
why do we stand helplessly by
as a child is taken
or a husband or a friend
why does death rob us of the
love and comfort of those we hold dear
and force upon us
too many goodbyes in a life
that is lived too short
each one takes a piece of our
heart until we feel shredded
and ragged and raw with
nothing left to exist with
each goodbye is final while we
remain here in this life and yet when we reminisce
about our losses
when we remember a smile
a voice
a smell or a caress
a pair of arms that comforted us
another heart that quickened
at the sight of us
we are warmed and coddled
and held safe
and oh how we hope that
we will find them again
they will be waiting in the brightness of the beyond
when we say our final goodbye
here on earth we will also be
joyfully saying hello to all of those
we thought lost forever with
too many goodbyes

 

BY JOANNE ELLIS

 

 

Angels

 

In this world are many angels

And we sometimes call them friends.

They encircle us with kindness;

Their love and caring never ends.

They are there when we are needy,

And they're there in glad times, too.

Without these loving angels

Life would be harder to get through.

God has sent them down among us

And we meet them everyday.

If we knew that they were angels,

Would we know just what to say?

We should surely thank our Father

For this, His special, loving touch

For without our friends, our angels,

Life would not mean as much.

He has said we should in all ways

Love and care for one another,

And that even total strangers

Should be looked on as a brother.

We have friends to help and love us

But are we always good friends, too?

We must strive to be like angels

In everything we say and do.

© 2006 Judy Haworth

"Keep on loving each other as brothers. Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it." Hebrews 13:1, 2

Free!

 

Do not mourn 'cause I'm not there.

Don't fall into deep despair.

My precious Lord has come for me.

He led me home and set me free!

He freed me from the ills and pain

That I shall never feel again.

My body's whole - His gift to me.

Praise God, He came and set me free!

Someday soon we'll meet anew,

We'll be together, me and you.

I'll wait and worship at His knee

Until the day you, too, are free.

Do not mourn 'cause I'm not there.

Don't fall into deep despair.

My precious Lord has come for me.

He led me home and set me free!

©2009 Judy Haworth

Dale Ellis
May 4, 1947 - November 19, 2010

 

I woke at 5 a.m. after being up till midnight the night before. I went to the bathroom, got a drink of water, and was heading back to bed when I decided to check on my husband. At 5:05 a.m. on November 19, 2010, I found he was gone. I checked several time for a pulse, held my ear against his chest, and realized for sure that his short, hard journey with cancer had ended. With tears streaming, I called the hospice nurse, and family, then sat and talked with him for a few minutes. The last alone time he and I would ever have. I told him how much he was loved, how I was going to miss him forever, and to look for his family members who would be waiting to greet him.
We were in the middle of a small ice storm and everything was glazed. First to arrive was our oldest son Daniel, who helped me put de-icer and grit on the driveway, and prepare for the day that was to come.
The hospice nurse called and was at another home in a neighboring city. Due to the icy roads it would be at least an hour to an hour and a half before she would be able to make it to our home.
Our journey to this date had started out actually over a year and a half ago. We had decided that we would retire in 2010, he on May 1, and me on May 14 as I needed to finish out the school year for the office I worked at. We were so excited. He turned 63 in early May, just days after he retired.
Starting during early winter of 2009 he had become more and more worn down and easily winded. His doctor changed his asthma meds, and reminded him about the roughly 100 pounds he needed to lose. He was really watching his diet, and trying to spend a few minutes every day on the treadmill, but the weight wasn't really coming off. He lost some, but was getting discouraged that he wasn't losing more. Over the spring months of 2010 he returned a few times to the doctor to tell her that the changes in his meds hadn't helped. He was relying more and more on nebulizer treatments every evening to clear his lungs a bit to breathe better. She changed his allergy meds too, and they were going to see if that helped.
By March of 2010 I had to drive Dale to the bus stop every morning as he could no longer walk that far; the equivalent of a bit over a block, without feeling like he was gasping. I reminded him that he would have to call his doctor and get back in to see her as this wasn't normal, he had been walking to that bus stop every working day for over 25 years! I dropped him off each morning, then drove to my workplace which was just blocks away, since I could park cheaper than he could downtown. I picked him up after work every day.
Finally May came and the first few weeks off were somewhat uneventful, although I was worried about his health. I had jokingly told him I was going to go to doctor appointments with him once we were both retired to be sure he told the doctor everything.
Now that I was also home with him all day long I could see how poorly he was doing. Things he used to enjoy were too much for him. This man loved to shop, and now on a good day he would drive me to the store, tell me what he wanted, and I would go get it. Or I went solo on most of the errands with a list in hand of what he wanted me to pick up for him.
I had waited to have a rotator cuff repair done until after I retired, and in mid June, two days after my surgery, I wanted to call one of our sons to take Dale to the ER. He had gone to the basement to do laundry, came back up and sat in a chair by my bed, and he was gray. He said
he just had to catch his breath. I was afraid he was going to fall over. His color was bad and he was gasping for air. He refused to see the doctor or go to the ER since he had a doctor appointment coming up that following week.
The following Monday I went with him to his doctor appointment. I told his doctor how worried I was, and that something was going on that was limiting his ability to do almost everything in daily life. I told her about his inability to walk through a grocery store, or do much more than sit. She decided that they would walk him around the building to see how his oxygen saturation would read afterward. He had been at 96% prior to the walk. I told her they would never be able to walk him around the building, and I was right. They never got him outside. He made it down the hall and back and his oxygen level was in the upper 80s. She had mentioned to him previously that she wanted to do some heart studies, and he did not want to go there. He had a stress test in the early 2000s and felt his heart was fine. Of course those tests were now over a decade old. I reminded him to tell her about the most recent kidney stone episode, and as she asked a few more questions, she determined that she wanted a kidney ultrasound, and a nuclear medicine scan on his lungs. Her suspicions were leading us in another direction.
Those tests were arranged for Friday that week, and he was immediately hospitalized as they found blood clots coming out of the kidney, and his lungs were full of blood clots. An MRI the next day showed us what we were facing...kidney cancer. Because it was so big and a special team would be needed to do this surgery his urologist decided to send him to Rochester, and Mayo Clinic's St. Mary's Hospital. We were sent by ambulance on June 30. I was allowed to ride with in the ambulance as I was not yet able to drive.
Mayo doctors needed to repeat some tests, and do biopsies. Then we waited through the 4th of July weekend before surgery was done on July 6th. Cousin Becky insisted on coming down to be with me while Dale had the surgery. She was retired and could now take the time to do this. I kept telling her to stay home, and I would call everyone with an update after he was out of surgery. I had after all sat through all of Dale's other surgeries (hips, back, etc.) and was used to this. She insisted and showed up, and thank God above she did. After surgery and our update from the surgeon Becky went back to our motel room to walk her dog and then take a nap. (She had driven hundreds of miles during the night to be there with me.) I waited outside of the ICU for them to bring Dale up. And waited, and waited. Finally the doctors came out and had me come back. Dale was surrounded by people. I was told he wasn't going to make it through the night unless they took him back into surgery immediately and hooked him up to an ECMO (extra corporeal membrane oxygenation...I think) machine. They could not oxygenate him and get proper blood gasses exchange stabilized. All the blood clots the kidney tumor had been throwing into his veins were ending up in his lungs. He would die without this. I signed the necessary paperwork and they told me to call the family. I first called our motel room and sobbed to Becky, "it's bad, get over here," and hung up. We waited in the ICU waiting room again for hours. I called out children. Dan was heading down the next morning. Katherine decided to wait for an update, and Jeff arrived the day after Dan.
We were finally able to see Dale during the night. He had been moved from recovery to the cardiac ICU because of the ECMO machine. So many machines going, he was intubated, he was receiving blood, pain meds, and lots of other assorted meds to keep him stable. He was in critical condition.
Becky and I stayed for awhile, and finally went back to the motel to collapse and sleep, if fitfully, for a few hours. We were over to the cardiac ICU bright and early the next morning. Dale had made it through the night. Thank you God.
We went from his ICU room, to the waiting room, to the dining room, and repeated all. Finally Dan called and he was on the freeway entering Rochester. We told him we would be outside the hospital and to watch for us. We took him up to see his Dad. I warned him about what he was going to see. So hard to see your husband or father in such dire straits.
Later we got Dan to his room next to us at the motel, and had supper. We went back over to the ICU. Becky went back to walk her dog, Lady, and Dan and I talked for awhile in the waiting room. Then back to sleep.
The next day Jeff showed up. He kept calling trying to find us. Dan used his I-Pad and had Jeff tell him what cross streets he was at. He could then tell Jeff what streets he needed to take. He was only about a mile away. We got Jeff settled into the motel and then we all went to the ICU. I warned Jeff to about what he would be seeing. Jeff walked in, started crying, and said "he's going to die." Dan and I reassured him that this was temporary and he would get through this. Jeff then introduced himself to the nurses in the room, and said "I was the only planned child." What? For heaven's sake Jeff, how is that appropriate to say here?
After a couple of hours of ICU visits and waiting room we met up with Becky and went to supper. The waiter asked us if anyone wanted a drink. Very loudly Jeff said, "No, Jeff can't drink, Jeff's an alcoholic." Again I looked at him and wondered what on earth was going on in his mind.
Dan stayed 2 days, Dad was stable, so he left to go home to family and work. Becky went home after a couple of days too. Jeff stayed. Jeff checked himself into detox...ok, I get it, Jeff had been drinking the whole time. Jeff had driven down to Rochester drunk. By day 6 I sent Jeff home. I was paying for family rooms, and all he was doing was drinking. He spent little time with me or his Dad. I was angry. I told him he needed to go back home to his wife and his job, and to sober up and not drive all that way drunk again. Sad but true I was glad to see him go.
Many people made that long trip down to Rochester while we were there. Dan and his wife Tiffany and grandchildren Katie, Elise, and Ben, Katherine and her husband Keith, my sister Lori and her husband Richard, friends Kay and Bob, Virginia and Richie, and a couple of Dale's former co-workers who were there for tests stopped in to see him. Neighbor Rhonda sent down some clothing items I needed from home with a co-worker who was coming down to Rochester. Kay sent a care package with books, pop corn, and other items that might be nice to have. Daughter Katherine did the same, and included a small fleece blanket, because she knows I am always freezing, little hand held video games, books, and a photo album. A sweet note on it said something to the effect that I know you want you and dad to be back home, but until you can be, here are pictures from home for you to look at. I opened it, looked briefly, burst into tears, and shut it again. It was a long time before I could look at all those pictures from normal, happy times again.
The nurses in Cardiac ICU told me about Mayo's Care Pages and got me the information I needed to set them up. Unending daily phone calls with family, friends, and former co-workers were wonderful, but a way to keep everyone all over the country updated was even better. I still talked to my children and some friends nearly daily, but the care pages were a blessing.
These are my updates to the Mayo Care Pages:
From short of breath to kidney cancer, here we are at Mayo. Dale had surgery on July 6 and ICU informed us that he would not make it through the night unless they took him back to surgery to hook him up to an ECMO machine. This has oxygenated his blood and taken care of all of the gas exchanges the lungs usually handle. His lung function has slowly been improving and they may remove the ECMO today. He is still intubated and sedated, but slowly, blessedly, doing better. This will be a very slow process. So, he has a long road yet. But, he is here with us and has the best care in the world. Kind words and lots of prayers. We will get him home yet to that "deck time" he was so looking forward to! Hi All,
Hopefully I will get this set so you can leave messages.
Posted Jul 12, 2010 5:08pm
Hi All, Still waiting for Dale to go into surgery to get rid of the ECMO (hopefully) or have it switched to a smaller venous version in his neck. Apparently surgery was busy today so he is one of the later ones who will go down. I imagine this place has surgeries going all the time!
I will update when he is out of surgery, but it may be later this evening.
Posted Jul 12, 2010 8:33pm
Looks like it will be around 9 before they take him in now. Their surgery was swamped today. May not be out before midnight or later so I may not give an update before tomorrow morning.
Posted Jul 12, 2010 11:29pm
They decided to NOT remove Dale from the ECMO tonight. They will likely put in a chest tube to remove the fluid buildup in his lung tomorrow morning. They will also bring the Urology team back in to see if they want to put him on dialysis for a bit as they are trying to reduce the excess fluid in his body, without straining the remaining kidney. It is stressing his lungs and body in general. With all the meds they have hanging on poles going into him it is not uncommon for 30-40 or more pounds of fluid to build up and create problems. So they just decided he really wasn't ready to go off ECMO yet. They keep reassuring me that much is going well, but this will be a long slow process.
More tomorrow.
Posted Jul 14, 2010 1:40pm
They are still trying to pull more fluid out of Dale's tissues. I could see a small change in his hands today, but there is a lot to remove yet and it may take days. He is being kept a little more sedated as his heart rate is better that way. Still on ECMO and may be for many days yet. As the one doc keeps reminding me...baby steps. He is still very sick and this will be a long haul. Sorry I don't have a better update today.
Posted Jul 15, 2010 5:20pm
Yesterday an ultrasound showed a lot of fluid in Dale's abdomen. Today, with ultrasound guidance they put a drain in to remove it. A bit over 6 LITERS! (Yes, liters.) It was old dark stuff. They believe the heparin was causing a slow but steady oozing at the surgical site. They are keeping the drain in for now. Dale's blood pressure, which had been around 80/54 shot up to 122/60! Maybe this is the turning point!
Posted Jul 16, 2010 10:04am
Dale's abdominal tube kept draining and the total from the initial drain to this morning was just shy of 8 liters. Last night they were worried it was still draining at about 500 cc s an hour. They were watching it to see if they needed to go back into surgery to cauterize something still bleeding. Luckily it slowed. So for now they are watching it. Today they will put a feeding tube down his esophagus to get more nutrition into him. So many tubes and machines. He will be on ECMO and dialysis at least over the weekend. They will reevaluate on Monday. A lot has to change before they can get him off of all of that. But, I keep hoping for more of those baby steps they want. Lots of prayers might help!
Posted Jul 17, 2010 8:04pm
A quiet day for the first time in many days. This is good, we will take quiet. On Monday and/or Tuesday they will revisit whether he is ready to come off of ECMO. They have it turned down quite a bit today and he is doing ok. Tomorrow they will turn it down some more and see how he does. That will tell the docs by Monday if he is ready to function without it. Abdominal drain still draining. Not huge amounts, but 300 or so cc s in a day. IF they take him down to remove the ECMO early this coming week they may scope the abdomen to be sure there is nothing still slowly seeping. It would make sense to be sure they have solved that too while he is anesthetized.
More tomorrow or Monday
Posted Jul 18, 2010 10:51am
Another quiet day (I hope). They have been turning down the ECMO to see how he tolerates it. So far so good. They will reassess on Monday morning to see if he is ready to come off of ECMO. They would take him to surgery, turn it completely off, and watch all of his stats. If he
stayed stable they would then remove it and repair the artery and veins they tapped into. They could take him down and decide he wasn't quite ready and bring him back up, and try again in a couple of days. IF they get him off they will put a port in for dialysis as that needs to continue for a bit. So far they have taken around 25 pounds of fluid out, which is a wonderful start. They need another 25 or so before they would remove dialysis. So first we see how he does today, then we see if they attempt to remove him from ECMO. They did say he is a lot better than he was early last week. The docs keep saying baby steps. Boy do I want to see a giant step or two! But every tiny improvement is good to see.
.Posted Jul 18, 2010 3:52pm
Adding this as although I put it in quick update I don't know when that shows.
I asked the surgeon yesterday to write down the name of Dale's cancer. From what I looked up so far on line it is scary stuff. It is clear cell renal cell carcinoma with sarcomatoid features. I just want to get him through this, into whatever treatment they can offer, and home to cherish and care for him!
Posted Jul 18, 2010 9:24pm
I forgot to add to my previous post (where is my brain?) that the surgeons will have Dale meet with oncology when he is better. Although this is a bad cancer (don't scare yourself Googling it like I did) they will still put him through chemo. We will know more what to expect when we get that far. I am hoping they can buy him years and years!!!!!!!!
Right now I am hoping for the ECMO to finally be removed tomorrow. They have been turning it way down and he is holding his own so far. Maybe tomorrow he will finally be ECMO free. I will keep everyone posted as to how it goes.
Posted Jul 19, 2010 2:23pm
Dale was taken to surgery about 1/2 hour ago. The nurse let me know that they were still checking all of his assorted tubes and lines before they start anesthesia. They will turn off ECMO and monitor him for about 1/2 hour. If he maintains in normal parameters they will then sedate him, remove the tubes from his groin, and repair the artery and vein they grafted into on July 6. If all goes well he will go to the regular ICU. They will keep dialysis going to continue to remove the excess fluid in his tissues. (about 27 of 60 or so pounds removed so far)
Posted Jul 19, 2010 4:13pm
Dale is still in surgery, but they have removed ECMO! Now they are repairing the artery and vein and installing a port for the dialysis machine. It will be a couple of hours yet before I have another update. But, a huge step in the right direction!
Posted Jul 19, 2010 7:38pm
ECMO is removed! He made it through surgery A-OK. They put the ports for the dialysis machine in his neck and Urology will be up to hook it up shortly. He is really still out since he needed full sedation for all of this. But, a good big baby step! He still has a lot of healing to do but this is so encouraging.
Posted Jul 20, 2010 6:48pm
Well here we are back in the ICU Dale started out in 2 weeks ago after the nephrectomy! When they removed ECMO yesterday I expected to see a neat incision and stitches. The roughly 4 inch incision is open and the packing is being removed and replaced 1-2 times per shift. Because of the artery and vein repairs they had to do there is still a fair bit of seepage and they want to watch it. When they change the packing the one nurse had his hand in so deep it was up to his wrist. Never realized how deep the incision was!
Other than the new incision needing to be attended to Dale had a calmer day. He is breathing some with the ventilator now, which is good. He won't get rid of the vent until his lungs can reliably handle the blood gas exchanges at appropriate levels. He is still on dialysis and quite a few meds.
It is worrisome that it seems he is not moving his right side very much. He does move his left arm some. They had to put a restraint on that side as he kept trying to reach the ventilator tube.
I talked to the doctor today about what kind of progress to expect and whether I could hope to get Dale home in time for some "deck time" yet this summer. Sounds like we will be lucky to be back to Duluth by the end of August and that he will need a rehab facility to regain his strength and ability to walk on his own. PT will be his friend!
So for now he needs lots of healing time. He is really not awake yet, and in some ways I am glad he is dozing through some of this still. Maybe by next week he will be off a vent and more awake. All in good time.
Posted Jul 20, 2010 9:26pm
I want to thank all of you who have left such wonderful messages of encouragement. Your prayers are also so appreciated! I will show all of this to Dale when he is better.
And to those who have sent cards....I am saving all that are addressed to him for him to open when he is better! Thank you too for the ones addressed to me. Anything from home always turns me into a crying mess as I so wish he were healed and we were back home with all of you! But, even though I get emotional, it is good to hear from everyone.
Posted Jul 21, 2010 3:51pm
Dale had the chest tube that has been in for 2 weeks removed a bit ago today. He is now down having an IVF filter put into a large vein leading to his heart. By placing the filter they can get him off heparin and still not worry about more blood clots to his lungs. (This is a removable version should it become clogged.) They can now turn off his heparin and give the open wound where they repaired the artery (after removing the ECMO) a better chance to dry up and slowly heal from the inside out. I forgot this wound had been open (not quite this big) for the whole time ECMO tubes were going in and out of him, keeping him alive. But it had been open so long that they would prefer it now heal from the inside out. So, a vein filter and turning off heparin is another good couple of baby steps!
Posted Jul 22, 2010 10:04pm
Yesterday they took Dale to surgery and put a filter in the main vein leading to his heart in case there are any other blood clots lurking. They removed his chest tube as it had not had any additional draining. : - )
Tomorrow is a tracheotomy. They can then get rid of the ventilator tube. Over the next days/weeks he will finally be able to talk, and slowly start sipping liquids, then eventually eating. They said the trach is more comfortable for patients and that they find it easier to wean them off of that than a vent. And, it is reversible. When he can breathe on his own, they cut a stitch on each side holding it, pull it out, push the tissue together, tape it up, and it heals fine.
I also heard tonight that they may remove the continual dialysis over the next few days and only do it a couple of times a week.
Dale was a bit more awake today and even realized I was there when I talked to him (I asked and he nodded yes, that he knew it was me.) He does gently nod or shake his head when asked questions. I can't wait till he can actually be awake more and is able to talk again
So, a pretty calm, good day. Still baby steps, but at least they are finally being made!
Posted Jul 23, 2010 11:41am
Dale had a good night and is mostly breathing on his own. They will take him to surgery around noon to put in the trach and remove the vent. They will also look at the wound where the ECMO was and rinse and repack it. That wound will be the slowest thing to heal as it is deep and the packing is changed several times a day. It must heal from the inside out.
So first, we get the trach today. Within a few days he will be able to start talking a bit (or whispering if necessary at first as his throat will be sore), and slowly liquids and food will be will be added.
More later if there is anything to add.
Posted Jul 24, 2010 3:13pm
Dale had a good night and morning. He is breathing on his own through the trach. Although he keeps his oxygen stats up, it is a bit of work for him. They were going to hook the ventilator up again at 2 p.m. to the trach so he could rest. He is off of continual dialysis and they will be doing it every couple of days if he tolerates it well. The continual is gentler but the regular can pull more excess fluid out of his body. They will do an ultrasound of his gall bladder today to see if it has any issues. His white blood count is still up a bit and yet they aren't finding any infection so far. All cultures are negative. So they will check a bit further to be sure they aren't missing anything. Dale is a bit more alert and does nod or shake his head to yes and no questions. He is still receiving a bit of pain meds that they hope to decrease more. On the whole, some good steps forward the past couple of days. He still can't focus well, but he does turn his head towards us when we talk to him.
Posted Jul 25, 2010 9:59pm
Dale struggled with the trach making him cough most of the night last night and most of today. They would put some lidocaine down the trach every so many hours, which would help a bit. The trach is a little short for his trachea and they may put an extendable one in tomorrow. I am told that would place it better for him and help. They are giving him low levels of pain meds and will give him some Ativan tonight to help him relax and get some much needed sleep. Until they can back off of the Ativan completely he will still be a bit fuzzy. It will take some days for it to wear off. Maybe by the weekend he will be awake enough to track better and start to talk a bit. I will post more updates as there are any this week. Let's hope for a quiet week!
Posted Jul 26, 2010 5:42 pm
Dale had his weekly surgical debridement and rinse and check of the open wound where the ECMO was. I will likely hear later how that went. They did put in a longer trach tube and he is breathing easier. He is still on so many meds that he is really not with it yet. They will be weaning him off of pain/anxiety meds and he MAY start to wake up more by the weekend. He can't focus yet on anyone, and that is hard to see. He does slightly nod his head or shake it when they ask him about pain. He moves his fingers and toes a little bit when asked, but not every time they ask. Tomorrow is 3 weeks out from surgery so to see him still barely responsive is hard. They keep telling me this will be a long, very slow recovery and I am trying hard to not expect too much too soon. Hopefully the rest of the week will bring rest for him and some slow bit of improvement.
Posted Jul 28, 2010 1:53pm
Dale had a pretty good night. He was up in a special chair for almost 2 1/2 hours this morning. He is looking around more, and nodding or shaking his head appropriately to questions. Poor guy is still trying to talk but it is too soon with his trach. In a week or two when he is stronger they will show him how to do that. Being up in the chair tires him out and he was ready to sleep for awhile. He has also been breathing on his own without ventilator support for 4-6 hours at a time before he is just so worn out they hook it up again. Yesterday's CT scans showed no problems so they are assuming the infection is the small area they see on the side of the old ECMO opening. That wound is still very deep and they are packing it and checking it and culturing it several
times a day. For now they put Dale on an antibiotic to be sure the infection is taken care of. They may remove his abdominal drain today as it is putting out only a small amount and has been in for almost 2 1/2 weeks, so they would like it out.
Maybe this will finally be Dale's "turn around" week and things will start to improve much faster.
Posted Jul 29, 2010 11:18pm
Dale had a good day. He is communicating by nods or head shakes very logically. He is awake a lot. He sat up in the special chair for over 2 hours. (It tilts back like a table to transfer him back to bed.) They were running dialysis again and that will finish at 11:15 P.M. Then I suspect he will sleep for a bit. He is mostly off of pain meds, which helped him wake up.
They deflated the balloon at the end of the trach so he can also breath through his nose and throat, with the trach. He is breathing a lot better this way. I think it is frustrating that he can't yet talk, as he tries so hard. But with the trach in he can't do that yet. PT was up today to help with regaining muscle strength and movement. After being so sick and laying for so long, he is very weak. Once he can more comfortably use his arms, he will be able to reach the trach and block it briefly when he wants to talk.
They took him into surgery and debrided the groin wound where the ECMO was again today. It is healing enough that they could stitch some of the deeper layers and put in a vacuum sponge, which is supposed to help it heal faster. He even watched TV for several hours.
I know he has a long way to go yet, but basically he has made a lot of progress this week! Feels wonderful.
Posted Jul 30, 2010 1:35pm
Dale is seeing PT and OT and got to sit up at the side of his bed today, and then later in the big chair they have for him. Sitting on the side of the bed helps work core muscles in a way that sitting in a chair does not.
He can now whisper some questions. The first one he asked me today was "am I dying from this cancer?" I told him I did not think so, and that they removed the kidney and the football sized tumor. I explained that the tumor had sent so many blood clots to his lungs that it was his lungs that have kept him so sick for so long. I told them they are improving.
I will answer more questions as he asks them, at the most basic level I can. I told him he will be able to talk to the doctors soon and ask them questions too. (I did not want to elaborate on all that happened to him up to that point or tell him what a very bad cancer he was fighting.)
They put a trach cap on his trach that allows him to breath in through the trach but out through his mouth and nose. This gives them a chance to see how well he is breathing on his own (no
ventilator attached) and it means that he can whisper (which can still be hard to understand). But his ability to whisper talk will improve as he uses his vocal cords.
He will still get dialysis this afternoon. His remaining kidney remains shut down and they are still hoping it will kick in. I have not explained the dialysis issue and he hasn't yet asked.
So, progress in so many ways. A good week after all!
Posted Jul 31, 2010 10:44pm
Dale had a wonderful, if tiring day. PT, OT, sitting on the side of the bed (with help), sitting up in a special chair. He is awake and completely "with it." He gets exhausted quickly, but he is working along with them as best he can. He can whisper pretty good now, which means he can really communicate with the hospital staff, and family (yippee!). He can't whisper long, but he can make himself understood.
No dialysis tomorrow, they will give him a break until Monday. Now if all of our prayers can get that remaining kidney to wake back up. The docs say it can sometimes take a month or two. So, there is still hope that it may return eventually to normal function. If it does not Dale would need dialysis on a regular basis. But we will cross that bridge if we come to it.
For now, wonderful progress!
Posted Aug 2, 2010 10:29pm
Dale has a functioning kidney! Tomorrow's blood work will show if it is doing all it's work yet or still needs a little help. He may need a few more dialysis treatments, but this is a wonderful development!
As he has become more aware he has spells of confusion. He will talk of things 20 years ago like it is now. They told me the confusion is absolutely normal and that it can take a week or so to clear up. Sometimes he answers appropriately and the next time something a bit bizarre. But they said as their brains are waking up from so many weeks of sedation they are processing so many memories and all the new data, and dreams, so sometimes responses don't "fit." So, a way to go on this piece of the puzzle, but it is normal.
His speech is still a whisper and they said the vocal cords will have to slowly come back too.
He will likely get out of ICU some time this week. Lots of PT and OT will be needed yet, and he has to be able to sit up on his own, and eventually walk. But we are headed in the right direction.
Posted Aug 5, 2010 2:58pm
Dale is getting a final dialysis (hopefully) this afternoon. His kidney function is improving and they hope this will tide him over while it continues to pick up it's duties. They will remove the tubes from his neck after dialysis is completed today.
Then he moves to Francis Building, 6th floor. He is returning (I think) to the urology surgical floor he had been on when we first got here. He is no longer in need of ICU care! (Yippee!) He spent 13 days in cardiac ICU, and 16 days in the regular ICU, so this is another step in the right direction.
He still has some confusion. He asked today whether I saw my brother. My brother died in 2003. But most of the time he answers clearly and is aware of his surroundings. He has only been awake about a week so far, and it may take a few more weeks for all of the fog to clear.
Now it will all be about PT and OT. He is still very weak, but is slowly gaining some independent movement of his arms and legs.
Also speech therapy will follow him to help him regain his voice (only a whisper now) and to assess his swallowing ability. Speech therapy will decide when it is safe to start letting him have more than ice chips. They will actually put a camera down his nose and watch him swallow assorted items to be sure they all go where they belong, and not into his lungs.
So I suspect we will still be here about a month yet. Once home and rested, he will have to return for assorted checkups periodically.
But at least for today, he is well enough to leave ICU finally!
Posted Aug 6, 2010 5:59pm
Out of ICU!! Yippee! For the first time in a month Dale is back on the urology post-op floor. (He had spent a few days there prior to his surgery too.)
The catheter in his neck for dialysis has been removed and the functioning of the remaining kidney looks very promising.
He may get his trach tube out later today!
He passed his swallowing test today with speech therapy and can start to have some clear fluids.
And best of all.......he says he feels like he just woke up from a mental fog. He is back with us again! Weak of body and voice, but doing great.
Now PT and OT, and a bit of time on the rehab floor in a week or two, and he will be up and moving.
Posted Aug 9, 2010 4:49pm
Dale no longer has a trach...yippee. Just a big square padded bandage. And, PT got him sitting up on the side of the bed, without being held by anyone, for a good 20 minutes. They have ordered a tilt table to put him on and put him slowly upright to strengthen those very weak legs. He will be
well and safely strapped in, but nevertheless, standing with full weight on his legs. Should come tomorrow.
The sponge in the lower abdominal wound from the ECMO is now down to something about 1/2 the width (length wise) and not quite as thick as a deck of cards. The sponge is covered with a clear bandage with a hole in the center, and attached to a very gentle wound vac, which has been helping it heal. The sponge needed to be easily 3 times that size less than 3 weeks ago.
He is starting to drink Ensure, juice, etc. but only a little at a time. He had about 2/3 of a Dixie cup sized serving of orange sherbet yesterday, which he said tasted so good. With the tube feeding going in he doesn't feel hungry. But as he can put in calories they can decrease tube feeding. So he is trying to drink liquids and will be ordering some soft foods this week.
Now that he is completely awake he REALLY wants to come home. I am feeling more optimistic that we may get home in late August or very early September.
He is making huge steps, no more baby steps.
Progress!
Posted Aug 13, 2010 11:53pm
Here we are at Friday the 13th! It has been a pretty good week.
Things are going well. Dale had a piece of toast with jelly 2 times today! Practically a banquet meal. Luckily, happily, nothing wild going on. They will take Dale to surgery on Tuesday and finish sewing up the ECMO wound. The wound vac has helped it heal so well that they can finally close it.
He has been on a tilt board 2 times a day since last Tuesday. They get him to a 40 degree angle so his legs start to get stronger and used to holding him up again. We may be heading to the rehab floor in a week and a half to 2 weeks.
One of the ECMO nurses from cardiac intensive care stopped by to see Dale on Thursday. He had heard that Dale was out of the other ICU and finally completely awake. That was really nice of that guy to stop by. Several people now (including the janitor who also did the ICU and the floor he is now on) have told him how good it is to see him awake, talking (good whisper with occasional voice creeping in), etc. All of them have told him how good it is to see him now considering how sick he had been. One of his surgeons told him tonight that if it had been done in Duluth he wouldn't have made it. (We were talking about how good it was that Dr. Hoffman sent him down here.) She told Dale that ECMO pulled him through it all. He told her he was just realizing how sick he must have been.
I still only answer questions he asks without unnecessary detail. (He doesn't need to know how bad it was!) Tonight I Googled ECMO so he knew what it was specifically.
So everyone, your prayers have helped pull him through!
I can't wait until we can actually head home to Duluth!
Posted Aug 17, 2010 8:50pm
They took Dale to surgery today and closed up the last of the ECMO wound. Finally! No more wound vac hooked to the hole that was still in his lower abdomen. The wound vac is really pretty cool, it helped it heal to this point so they could now close it.
The remaining kidney is picking up beautifully. All the blood work indicates it is functioning well. A big relief!
Dale sat up at the edge of the bed and ate a light supper. Mac and cheese, chocolate milk, and a popsicle. He still needs help to get sitting up like that but is now strong enough to sit there unattended.
They got him briefly to 70 degrees on the tilt table today. Most of the 20 minutes was spent at 50 degrees. But that is good too as it is up from 35 degrees last week. Hopefully in another week or two he will be strong enough to stand on his own.
We hope to be moved to the rehab floor in less than two weeks.
So much good progress! I think he is past baby steps now and making huge steps. I am sure the rehab floor will be a lot of work for him but he is highly motivated...he wants to get home.
Posted Aug 20, 2010 3:37pm
Dale says a hi and thank you to everyone for all the kind words and prayers. He is still very weak, but working with PT and OT and able to sit in a chair now to eat! Finally put on a normal eating menu today. More PT over the next couple of weeks, and before you know it we will be home.
Posted Aug 26, 2010 10:29pm
Dale is finally on the rehab floor. He will now get the concentrated PT and OT he needs to become fully mobile again. Right now he can get in and out of bed, and uses a walker to walk a few steps to transfer to a chair. Hopefully within 2 weeks they will have him walking and we will get to go home! It will take months to get his stamina back, but they should be able to help him rebuild muscle strength in arms and legs.
A wonderful step in the right direction! (No pun intended.)
Posted Sep 1, 2010 8:49am
In just the few short days he has been in rehab Dale has done amazingly well! He gets stronger every day. It is definitely hard work, but he too is happy with the results (although exhausted!). He has even been doing some stairs, using handrails on both sides, by himself, with only the therapists hovering in front and behind him. He has a way to go before he can be strong enough to get up the stairs at home, but they are pleased with his progress! Once home, and safely up those stairs he will be able to stay there thanks to the small apartment next to our upstairs that used to house his mother.
His determination is amazing...he wants to get home so much! After all he has been through, to see him at this point, he is my miracle man!
Target date to head home is September 18. We both can't wait, and I have no doubt he will be ready!
Posted Sep 7, 2010 6:12pm
Dale has been working so hard on the rehab floor and it sounds like we will get to go home this weekend! A full week faster than their original estimate! (Way to go Dale!)
We should get to go home this Saturday, and our oldest son Daniel will come and get us. He has already set up some things Dale will need at home.
We will have to return in about a month for a surgical follow up with his surgeon, CT scan, blood work, and a meeting with oncology. This whole thing isn't completely behind us yet, and he has much to go through before he is cured.
But compared to July 6th, it is wonderful to see how far he has come!
As he had me write for him in Face Book yesterday: Thanks for all of the prayers. They worked!
Posted Sep 12, 2010 8:46pm
We made it home yesterday thanks to our wonderful driver, son Dan. Grandson Ben came with to help, which was most appreciated.
Dale is still weak, and tired, but doing well.
We have to be back in Rochester on Oct 4-6 for more tests and doctor appointments. We meet with oncology while we are there too. I believe whatever chemo they arrange can be done here in Duluth.
At least he got through the worst of it and is on the mend.
Posted Sep 24, 2010 4:29am
Well, life keeps us on our toes.
Dale is now in St. Mary's Hospital in Duluth. He has a kidney stone and infection! We came in about midnight after he had passed red urine. A CT showed about a 5 millimeter stone. They took him into surgery to put a shunt around the stone so the remaining kidney can work. He will have to be in the hospital for several days. Sigh!
Posted Oct 7, 2010 12:20pm
We went to Rochester on Oct 4 for a follow up set of tests and to meet with oncology on Oct 5. We expected to hear that Dale would need surgery to remove the small growth in his right lung, then chemo and/or radiation to either get rid of any lurking cancer cells, or to keep them in check. We expected to buy some time, maybe a few years.
Instead, the tests on Oct 5 showed widespread metastatic cancer. Little to medium sized growths everywhere. We were told this is an aggressive, and rare cancer. And, there is nothing more they can do. No further treatment, but hospice mode instead.
To say we are devastated would be an understatement. The doctor said he expects with the rate of metastatic disease he saw means it will be relatively fast. He said if we are very lucky we may still have "double digit" number of weeks.
So we are home, and making whatever plans we need to now that we know this is terminal cancer.
If you can, please call us at 724-4347 to arrange a time to visit Dale.
I won't post anything further on these Carepages. I just wanted everyone to know where we are at.
Thank you for all of your prayers through all of this.
=============
And so end care pages updates. But not the end of Dale's ordeal. I wheeled him in the wheel chair back across the street and when we got back to the hotel we held each other and cried for a bit. I remember crying so hard at one point Dale told me to breath! We then decided not to call our children right away. Maybe we would wait until we were back in Duluth. I then called the friends who had brought us to Mayo for this appointment. They had gone back up to the twin cities to stay with their daughter and family and would be back to pick us up the next afternoon. I told them what had happened and asked that they get us first thing the next morning. We wanted to go home. We were is such horrible shock we just needed home.
I then called Neprhology and cancelled Dale's surgical follow up with his surgeon that was scheduled for the next day. Neither of us could bear the idea of staying for that appointment. Or even going to it. At this point, why!
We talked about retirement funds as Dale was worried whether I would be ok. I reassured him that it would be ok. I wasn't ready to talk about life without him! To say it was a rough evening would be an understatement. Lots of hugging and tears.
The next morning finally came and I fed us some forgettable breakfast, and packed our bags. Then we waited and waited. Finally a call from our friends about traffic delays. We turned on the TV for a bit as a distraction.
When they finally arrived we checked out and loaded ourselves and our bags into their car. There was nothing to say, and for awhile we all were pretty quiet as we drove.
I honestly can't remember if we stopped for gas or food on that drive home. Dale and I had talked the night before about how hard it was going to be this time to get finally to the top of Thompson Hill and see the bay, lake, and city spread out. Home for the last time for him.
We got home and settled in, numb. I am sure I made supper that night, and I am sure we talked for hours, called family and friends to update them on what happened, and rested. It is all a blur.
The next day I had to send an email to Dale's former co-workers about the diagnosis. I just couldn't talk to them yet.
I also emailed our doctor's office to arrange hospice care, and both Dale's doctor and my doctor called. I think hospice called later that day and arranged to come to the house the next morning.
I went to the store and got baby monitors to use between his bedroom and mine. That way I could hear him the minute he needed me at night.
When he slept during the day or early evening I was just around the corner from his bedroom at my computer. Barely 14 feet from his bed. I played a lot of computer and Face Book games to have something to do.
I took a foot stool into his room often in the evenings and we watched some TV together. I would lay my head on his bed and he would put his arm around my shoulders. I saw little TV. Spent most of such times crying. Trying not to let him see me. We talked about what was happening now and them, and hugged. Every single time I left his room I hugged him and told him how much I loved him. He told me the same every time.
From probably week 2 home the TV was on 24/7. He didn't want a quiet dark room.
We also called a lawyer to have power of attorney set up for me to take care all of his end of life needs. We did a Minnesota Health Care Directive. To read the DNR listing because of terminal metastasized kidney cancer was devastating. The lawyer thought of so many things we would not have. She had Dale sign the car title so if I ever wanted to sell it in the future I could.
Family started visiting many times a week, as did friends and former co-workers. Dale quickly got sicker and frailer.
For the first couple of weeks Dale could still come out of the bedroom into the little adjacent living room to visit. He was on crutches, but he could manage. I had ordered chair and couch
risers from Bed Bath and Beyond so he could more easily transfer from sitting to upright. At 6 foot 3 inches tall, and being somewhat weak, it was hard for him to rise from the furniture otherwise. We also put his bed on the 3 inch risers.
Visitors brought candy, bread, and assorted treats for him. Most of which he could not eat. The cancer was affecting his ability to eat, and nausea and vomiting were constant problems. He got weaker and weaker, paler and paler.
My cousin Bryan called and said he wanted to take some family photos for us to have. W hat a precious and wonderful idea. Bryan is an excellent photographer! He asked where in town we should have everyone go. Would we like Enger Tower? Down by the lake? I had to tell him Dale was too weak now to even go downstairs, let along out of the house. So we arranged with our children and their families to come up the next Saturday afternoon and we all took turns sitting with Dale for these pictures. I barely was able to hold it together long enough to get through them. To know why we were taking the photos just tore me up. Bryan put the photos on a cd and gave us several copies. Endless thanks to Bryan for thinking of this!
A hospital bed was delivered and the commode was moved into his bedroom. Assorted meds were prescribed to help with nausea and pain. It was harder and harder to find anything he could keep down. We went to smoothies, then baby food, and finally to just sips of apple juice and water. We gave up checking his blood sugars or giving him insulin injections. During the last week and a half he could barely manage to swallow tiny spoonfuls of water slowly drizzled into his mouth.
He developed huge swollen, painful lymph nodes on the lower back of his head and he found that heat softened the pain for him. We used those little pocket heat packets with a wash cloth over them. Anything that would make him more comfortable. We used one for a couple of days on one on his thigh also.
For awhile he enjoyed the visits from everyone. Then as he got sicker, and could no longer get out of bed, he only wanted to see family. He asked me to let everyone else know that he just didn't want visitors anymore.
Hospice arranged for a home health aide to come a couple of times a week and give him bed baths, shave him, help me change his bedding, etc.
As the weeks went on and my big strong husband could no longer really move himself in bed, he would still get his ankles twisted. I would get them unlocked and pillows under them to try to keep them from tangling. This would happen several times during the day and during the night. It was so painful for him to be moved at all that he would cry out. I would apologize for hurting him and try to solve the issue as quickly as I could.
When Keith and Katherine were up every weekend they would help me change his bedding and reposition him in bed too. It was a task I was physically unable to manage alone.
I would hug him, tell him how much he was loved, kiss his forehead. He would whisper that he loved me and doze back off.
The last weekend before he died his pain level was spiking and hospice wanted to move him to Solvay House, a hospice facility where they could rehydrate him with IVs, and get his pain under control. My husband refused to leave the house. He wanted to be in his own home and so that is how it stayed. Hospice added another pain med, and one of the workers told me there wasn't much time left.
The last week my poor husband could no longer move. He could no longer talk. He could no longer shut his eyes. But he could hear. I had been crushing his pain pills for some time by then, and finally was drawing them up with a minimal of liquid and slowly drizzling them into the side of his cheek down by his teeth. Hospice said it would be absorbed this way, even if he couldn't swallow.
On Thursday that week cousin Becky, a retired RN and former hospice nurse (among the many things she did in nursing during her long career) sat with Dale while I ran some errands. I told him she was there, and that I wouldn't be gone long. Becky talked to him about it being ok to let go and how all the family would be there to help and support me.
That night after Becky left I was in and out of his bedroom many times. Even though my dying husband could no longer speak, when I hugged him and kissed his forehead and told him how much he was loved he would move his lips...I knew he was trying to tell me he loved me too.
The next morning he was gone and my heart was forever broken.
It has been a long and painful journey from that day. Funeral and visitation plans were made, family and friends were there, and so much of it is a blur. We held his visitation two days before Thanksgiving in a snow storm. The next day, the day before Thanksgiving, we held his funeral. So many people who had known my husband filled the funeral home, along with family and friends.
So here I am 15 months later finishing this story. That first horrible year of "firsts" was so hard. Christmas, anniversary (would have been 44 years), Easter, birthdays, family picnics, etc. without him. But now I am somewhat amazed to report that I am doing ok. My life has changed so much in ways I could not have foreseen, and I am ok. I go up to the cemetery now and then and talk to my Dale. And I know I will see him again when it is my turn to pass on.
So this was our journey through cancer. I am sure I have left out much, and I don't mean to forget to mention all the unending kindnesses from so many people. My brain has turned so much into a blurring kaleidoscope of memories. Endless love and thanks to our children Dan and Katherine and their families, and friends who selflessly were there for us.
And sadness and pity to our alcoholic son who could not be there during the last many months. He saw his father once in September when we were first home. Once he heard it was terminal we never saw him. He lied and requested FMLA time off from work because his dad had cancer and he might need to help his parents! He missed out on sharing a sad journey, and so much shared love and support from everyone. His drunken ranting phone calls about all his problems in life and how terrible he thought he had been treated growing up, and how that SOB---his dying father..had treated him started during the last month of his dad's life. Also how I never did enough for him. All who know us know that is alcohol speaking--he was raised the same as his siblings. Those phone calls may haunt him someday. We didn't even know where
he was when my husband died and that broke my heart. All calls were from different motels in town. His second marriage had broken up while we were in Rochester, and he was moving from motel to motel. May he eventually find sobriety and return to the family like the prodigal son. He burned a lot of bridges with most of the family and will have to work on rebuilding relationships.
Cancer is a horrible, devastating disease, and a journey no one wants to take, but millions of families go through every year. Everyone experiences it differently. This was just our story.

Post Script:  I told a friend recently it felt a bit like PTSD after having lived through all the things that happened with my husband's cancer.  I hear about someone else starting any kind of cancer journey and I flash back to all we went through.  I was there with him every single day through the whole thing.  I could not have NOT been there.  People said "oh it is so sad, you just retired."  And I would tell them thank God we had because I would have been torn between being there with him and having to come home to work to pay the bills.  Being retired, allowed me to be by his side every step of the way. 
 
When Jeff was misbehaving and stinking drunk down at Rochester, I was so stressed the social worker had me talk to a chaplain.  That lady said maybe I needed to go home for a few days and just rest.  Then come back refreshed.  I said I couldn't leave him, that man is my life.  I sent Jeff home but I stayed.

Dee Clayton

 Athlete of the Month / Tribella Women's Multisport - Dee Clayton

Do you have what it takes to inspire? If you’ve ever wondered how to make an impact on others, take notes from Dee Clayton. To say she’s an inspiration is an understatement. Dee is an accomplished athlete who has found success as a cyclist both on the road and on the trail. She won the TBRA Tennessee State Mountain Bike Championship, raced the Hell of the South road race last year, and finished a 100 mile bike ride from start to finish in four hours and thirty minutes. That’s fast! Her most recent victory was late last year when she won the Tennessee State Mountain Bike Championship.

Outside the cycling world, Dee is an equally accomplished philanthropist and is extremely passionate about giving back to charity. For years, she has contributed to a variety of charities by participating in fundraising events and by raising money for her favorite charity race, the Susan G. Komen Evansville Race for the Cure. Dee is captain of the team, Maude Squad, which her cousin Maude started when she was diagnosed with breast cancer. Since Maude succumbed to the disease at a very young age, Dee has led the way as the top individual fundraiser of the event for the last three years.
This year the race has more meaning. Only a few months after her 2010 mountain bike victory, she was diagnosed with Stage IV kidney cancer. Since her diagnosis in December, Dee has undergone numerous radiation and chemotherapy treatments, as well as two extensive surgeries within three days. One surgery was to remove a kidney, while the other was to remove two vertebrae. Doctors replaced her vertebrae by a titanium cage that surrounds her spine. Basically her spine is fused from L1 to T11 with three anchor rods that are over a foot long and held in place by nine two inch long screws. Dee was in a back brace for three months yet still her pelvis and hips are turned forward causing her to be bent over in what she jokes is “a perfect aero position on the bike.” Dee’s humor and positive attitude are infectious. She once commented on the cycling connection she has with her Doctor; he worked on Lance Armstrong’s cancer team from Indiana University.
Throughout Dee’s treatments, surgeries, and rehabilitation, she has remained positive and upbeat in the face of her terminal diagnosis. One of her good friends describes her as a “true inspiration on and off the bike, and the sweetest person I have ever met.” Despite numerous setbacks during her life, including the loss of her father at a young age, several bad bike wrecks last year, and a broken arm on the first vacation since her surgery, she has displayed tremendous courage and strength. While she has accepted her condition, she still wants to make a difference in cancer awareness and fundraising to find a cure. This fall, she is excited to yet again be part of the Tri for a Cure held on September 24^th. She says, “I can’t wait to do it again this year…even though they may have to push me in a wheelchair for the 5K! I enjoy helping others so much. This year it means more to me than ever!”
In the last few weeks Dee’s condition has worsened, yet her passion for this cause remains. Although she is unable to personally raise money for the race, her friends and family ask that if you are inspired by her story and enthusiasm for helping her find a cure for cancer, please use the link below and donate to her team and to her specifically. Her family is hopeful that Dee will be well enough to attend the event. She has some “really cool” shirts planned for the team.

Link for donations:  https://secure.info-komen.org/site/Donation2?idb=1140161800&df_id=6378&FR_ID=2171&PROXY_ID=9345132&6378.donation=form1&PROXY_TYPE=20

Athlete of the Month / Tribella Women's Multisport
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As posted at this link: TriBellas

Joan Van Boxel 

September 16, 1947 - August 8, 2010

 

February 2012

 

There are times in life where you can place back in time and remember every exact detail of what happened, your emotions, what song was on the radio, the time, the place, and every single thought you had at that moment. From December 30th 2009 until August 8th, 2010, I had many of these moments.

It was New Year's Eve Day and I was on my way home from dropping my kids off by my mother in laws house, cause we had plans to go out that night. I knew my mom was at the spinal clinic with my aunt to figure out what was going on with her back and why it was so sore, so I was anxiously awaiting that call. Half way home, I got the call. My mom was calm as she told me that she had kidney cancer and that it had spread outside of the kidney. WHAT!! what is kidney cancer? Never heard of it until this moment. Being the need to know freak that I am, I looked up kidney cancer as soon as I got home. Talk about having your heart ripped out, I was devasted. My mom's cancer was terminal. My mom was going to die!!

My life changed that day, my faith changed that day, my relationship with my mom changed that day. I was no longer just her daughter, I was now her strength, the person that she wanted to talk to, the only one she trusted to get her in and out of the house for appointments. The only thought I had was, how can I be strong for my mom when all I want to do is call my mom and shed my tears to her, not for her.

One particular time I will never forget, where my strength was tested was at an appointment, almost near the end of my mom's journey. She was just sobbing, she wasn't ready to die, she is afraid of the pain, she wants to see my daughter Lily get married. Do you know how hard it was at that point to carry on? I prayed that night that God would give me more strength, I was feeling weak. The next day, I was ready to face the battle, He was there to help me through this.

The night before my mom would be admitted to the hospital for the final time, my dad called and asked me to come. My mom wanted me there, the pain was really bad. I hopped in the car and spent the night talking to my mom about everything. I asked her when she passed if she would find a way to give me some sign that she was ok and that she was in Heaven. She promised she would, after she giggled a little bit. That night I watched her sleep and listened to her cry, even in her sleep. My heart broke again, was the most helpless feeling in the world. I wanted to take her pain but I know if it was possible she wouldn't have let me.

The next day she said something wasn't right, she wanted to go to the hospital. I think she knew she wasn't coming home. I watched her look around the house, as I pulled out of the driveway, I saw a tear go down her face. That day we were told my mom would be signing with Hospice. We all knew this, but my mom was heavily sedated so she didn't know yet. I went home for a bit to catch a little sleep and we had decided to let the doctors tell her.

About a week later, I left the hospital to again sleep and just leave for a while. I was called back almost as soon as I sat down. Mom's breathing had changed. Brad and I flew out the door, he dropped me off and I sprinted to her room. She had what is called the death rattle, never heard it before, I broke. I completely broke at that point. Some how after I settled, which was minutes, I walked to her, my dad and brother were holding her hands so I went to her head. We prayed the Our Father and then I told her it was time to go. I told her to walk to grandma, walk to the light, walk to the beautiful music, we would be ok, I will take care of dad and Jake (my brother). Her breathing was really quiet while I was talking and I could feel it slow, just before her last breath I whispered I love you and she was gone.

The next week was hectic with funeral preparations and then the funeral. I didn't have time to think, in a way I felt relief that she was gone. She had no more pain, no more suffering. It's hard to watch a loved one going through something like that. If relief sounds harsh, I apologize, but that's how I felt.

3 months down the road, it hit me! My mom was gone, she was really gone. I remember laying in bed and crying so hard that I couldn't breathe, my heart was broken, I would never be the same. I wanted my mom, I wanted to call her and ask her how do I get through this, but she wasn't there. 6 months later the pain was raw still but the crying was less and less. The 1 year mark was horrible! I was at the hospital again in my thoughts losing her all over again. Today it is coming on 19 months, I don't have the pain anymore. I miss her and will always miss her, but today I can talk about my memories with her and even smile or laugh thinking about her.

If you have a parent with cancer, my advice to you is to love them as much as you can. Be open, leave nothing unsaid! Have no regrets, I have none, and I think it has made my healing process easier. Be with them when it is there time if at all possible. It was a very special moment and I was so afraid I would miss it. Tell them you love them 100 times a day if you must, but make sure they know, cause you never know if you will get another chance. Live in the moment, try not to think about the future, it will kill you inside. Pray for miracles, pray for peace, pray for strength, pray for everything...it helps!!

One more thing before I close this up...you may have forgotten about "the promise" she made to me. Well, a couple of months ago we were in Green Bay and I decided to stop and "see" my mom at the cemetary. Prior to this, I hadn't been there since her burial. Anyway, my family and I pulled into the parking lot and all the lights in my van turned on. I felt immediate peace, peace like no other. I know in my heart that my mom kept her promise to me, she is ok and she is in Heaven. Somehow, some way, God let her tell me!! Since that day, I am ok, I mean really ok.

Hope Nesper

 

 

 

November 2010

Joan is survived by her husband Daniel, children Hope Nesper and Jacob, 3 grandchildren Andrew, Braedy, and Lily.  One brother Bruce all from Green Bay,  WI.  On August 8th, 2010 Joan lost her 7 month battle with kidney cancer.

This is my mom's story with cancer....

Starting in the summer of 2009, my mother started having back and shoulder pain.  She played it off as swinging on the monkey bars with the grandkids or from taking my lab for a walk, or should I say my lab taking her for a walk.  As summer went on the pain was getting worse and worse so she decided to see a chiropractor.  He treated her for months, when finally he told her that this pain is not normal and that she should see her family doctor.  My mom scheduled an appointment with the doctor for a physical, she hadn't seen the doctor since she was diagnosed with melanoma cancer probably 20 years back.  Needless to say she was very nervous.  The doctor noticed she had extremely high blood pressure, I can't remember the numbers, but it was dangerously high.  That was the first sign of the cancer, but who would have thought!  He started her on blood pressure medications and gave her muscle relaxers for her back.  By this time it is November, the blood pressure is better but her back is still hurting uncontrollably.  She decides it's time to go back to the doctor, this time he wants to do an MRI but my mom refuses, she had a fear of closed in spaces.  Again, more muscle relaxers and finally she agrees to see a spinal doctor.  She told my mom they have an open MRI machine and my mom agrees to it.  My aunt was with my mom during this MRI appointment and immediately following the MRI, they sent her to the doctor for results.

It was New Year's Eve day and I was on my way to my mother in laws house to drop off my children, we had plans to go out that night.  My aunt called and said they wanted to see her right away.  My heart dropped, I knew it was bad.  Not only did she have back pain, high blood pressure, but she was also suffering from night sweats.  I knew she had cancer of some sort, but I figured it was ovarian cancer.  I dropped off the kids and on my way home I got the dreaded call from my mom.  She was crying and said she had kidney cancer and that it had spread to her bones.  Kidney cancer??  What?  I never heard of kidney cancer.  I told my mom I would go home and head to Green Bay to take her to the oncologist.  When I got home I looked on the internet about RCC and what I read scared me.  How was I supposed to go with my mom to this appointment, she is going to die!  I pulled myself together, drove to her house crying all the way there.  I had to stay positive and strong for my mom, I just had to and at that moment I knew I would be my mom's strength through this.  I prayed for this every night...

We saw the oncologist and they scheduled more tests.  We found out she had numerous spots in her bones, one on her liver, 2 on her lungs...he told her she was terminal, but that treatment for RCC has come a long way and their hopes were that she live a somewhat normal life for quite some time.  They started her on Torisol first which she did really well on.  Hardly no side effects at all and she was feeling somewhat better.  They also did radiation on her bone mets and on the mets she had on her skull.  My mom lost her hair from the radiation, but it did shrink the mets.  We later went in for a check and found the Torisel had worked!!  So excited, my mom may have a shot at some time.  Well the end of March my mom started passing blood clots in her urine, so back to the oncologist we went.  More scans and this time the news wasn't so good, the tumors had grown and she now had more tumors including one on her other kidney.  He said it was time to remove her kidney.

In April she had a radical nephrectomy in which they removed a cantaloupe sized tumor from her kidney.  They told us she was recovering well, but as the day wore on she wasn't coming out of it.  She was in a deep sleep, but they never said a coma.  I thought for sure this was it, this was the end.  After a couple of days she finally came out of it and then was released.  She recovered fairly well, no other problems.  We had to wait 6 weeks before they would start her on Sutent, it would take that long for her to heal.  So on her 6th week of recovery, I was heading over to do some cleaning and grocery shopping and as I pulled on their street I saw the rescue squad!  Oh I was so scared, what is happening...I somehow walked into the house to find my mom almost unconscious with paramedics all around her.  She lost total control of her bowels and honestly she looked dead.  They took her to the hospital and couldn't find a blood pressure.  We later find out she had almost a complete blockage which they fixed right away.

So in June they started her on Sutent and wow was she sick.  She had horrible diarrhea, no appetite, she was losing so much weight she looked like a skeleton.  All she did was sleep, no improvement at all.  On August 4th my dad called me at 8pm and asked me to come, my mom was in a lot of pain and wanted me to come.  I sped over there and had the best night with her.  We talked and I mean really talked about things.  She told me she was ready to give up, the pain was so bad and now she was getting headaches.  My heart just broke, I knew the cancer had spread to her brain.  All night long I just laid there and watched her sleep.  Why Lord, why is this happening?  My poor mom looked so sick and I was so helpless.  The next day which was a Sunday, she said something was really wrong and she wanted to go to the hospital.  I noticed that her stomach was swollen, not good.  While I was getting her ready to go, she really took time to look around the house.  This was her sign to me that she knew she wasn't going back home.  It is really hard thinking about that day.

At the hospital they ran more tests and my mom was given Valium for the MRI so she was out of it.  The oncologist came in and told us things weren't good.  The cancer had spread all the way up her spine and it had moved into her brain.  They told us it was time for hospice.  I think we all kind of expected this, but it was very hard to hear.  My mom was sleeping and had no idea what was going on.  When she woke up, who should tell her?  Us or the doctor?  We decided it would be best for her to talk to the oncologist.  The next day, Monday she had some more tests done, why, I don't know.  But on Tuesday they finally came in and told her all the bad news.  She cried and pleaded with them to keep looking for something to help her.  It was heart wrenching and again there is nothing you can do, I have never felt so helpless in my life.  They said she probably had about of month left with us.

On Thursday I headed up to the hospital and before I even walked into the room the hospice nurse grabbed me and took me in a room to talk.  She said my mom took a turn and probably would be gone within days.  What??  She was just talking to me on the phone last night, how could this have happened.  We all took turns staying with her and on Sunday night we got a call that mom's breathing had changed to come soon.  We all made it to the hospital and said our goodbyes.  I went by her head and whispered to her that it was time to leave, to walk to the bright lights, heavenly gates, to find my grandma and take her hand, that she would lead her the rest of the way.....I whispered I love you and in that moment she left this life to start her new heavenly life.

I miss my mom so much and so many times I have picked up the phone to call her and then I remember that she is no longer with us.  It hurts every time!  I still can't bring myself to the cemetery, it is still too fresh and too hard.  When my mom died she took a piece of me with her and I know that time heals, but part of my heart will always be with her.  I can tell everyone reading this that everyday I had with my mom was a gift and we had so many good talks, nothing was left unsaid.  I wouldn't have had that if she would have been killed in an accident or suddenly died for some other reason.  It is a very hard thing to go through, for the patient and also the family.  My mom always said that there was a reason God choose her to have cancer.  Even if it brought one person closer to Him he has served His purpose.  My mom never lost her faith, never blamed God, never asked why me, she was the strongest, most caring woman I have ever known and I am happy to say she was my mother!  Love you forever mom and until I see you again...

Written by Hope....her daughter

In Honor of My Mom