Richard's own words....

Hi all.

Many people have asked for an update on my status. I wish I had better news but such is the battle I must fight.

Starting about mid-October, I started getting lots of bile reflux. At first, the doctor’s believed it wasn’t an issue but as it got worse, I started having other issues as well.

I eventually ended up in Mercy Gilbert Hospital with severe kidney pain likely due to
dehydration. After a not good period in the hospital in Gilbert, I was transported to Tucson and back to UMC. After one CT scan, my UMC doctor decided that the cancer had clearly returned. If you wantto hear about the MGH 2 week saga you can drop me a line. Anyway, I was at UMC for a week before they sent me home.

It is nice to be home but I am not able to eat so I am on IV TPN and still getting sick every few hours. In addition, last week, I restarted chemo to see what happens. The hurry up and wait and see is excruciating, but what all cancer patients must experience. They plan to do 2-3 more rounds of chemo and then rescan. At that point we will decide what to do.

As everyone knows, patience is a virtue I lack, so this is definitely hard. Being home is definitely the happiest place I can be. Paul and Anna drive me nuts, but that’s just my energy level. Heather has been amazing and I can only say I love her as she has provided so much support.

To those who have written or stopped by, I say thank you and I’m sorry if my mood swings are legendary. I would not wish this internal mental and physical battle on my worst enemy. My energy level varies from minute to minute.

I also want to thank my co-workers who have provided me with work to help distract me from the abyss that this can be. Definitely, the #1 thing I find is an unchallenged mind results in fatigue, doubt, and depression.

Thanks and best wishes to everyone,
Richard

14 hours later....

The surgeon has deemed his surgery "successful"!!!! I am exhausted but wanted to make sure everyone knew that all our prayers have been answered! Thank you for your love and support

Update from Richard

It has been a long time since the last update. The last series of chemo (3 rounds) regiment was, to put it nicely brutal. During the first series of 3, I was usually ok by about day 14 or earlier of the 21 day round. For the second series, with 2 extra days of 5FU (apply named), I was lucky to be better by the 18th day. For
the second round of the second series, I think I recovered the last day. So, getting only 3 or less days of relatively good health was really tough. I know everyone will laugh at me, but most know that I really love what I do, so my best round was the last round of the second series. I was good enough to go to work on day 15 which coincided with the day silicon came out of FAB and we did power on (only 2 days until we had full functionality and I was able to help debug a few of the issues).As those who know me, I was in the hospital during A0 power on and it was very, very hard. For those who can’t relate, think of having a baby. You toiled for 8 ½ of the 9 months and then were sent away to not be able to be involved at the birth or after.

Anyway, I am now 5 weeks past my last round and feeling very good. Today, I convinced Heather to go to the gym with me and the kids so we could go swimming and use the water slide. Last Monday, they removed my feeding tube which I had not used for 2 week prior to that. I can only tell you that I would not wish a feeding tube or my second round of chemo on anyone (friend or foe). The chemo just because of how hard it is on the body and the feeding tube because it is a constant reminder of things happening and painful in general. I will be getting one back after surgery but 2 weeks without is indescribable and swimming today was the happiest I have been in 3 or more months.

So what has happened over the last several weeks: I had a PET scan last Wednesday and just like the previous it came back clean (so doesn’t mean much); my lab work shows my body has completely recovered from all the chemo of the second round (white and red cells good). I show now visible large masses of tumors (didn’t before because my cancer is more like spurge than dandelions in the lawn).

I am going to U of Az instead of Mayo as it was recommended by several (including my Mayo surgeon) to see if I could get "hot chemo" after the stomach removal. I was accepted into this experimental program (likely the first or low 10s to have this done for stomach cancer). The procedure is radical (stomach removed and anything else they feel could be an issue later, the intestine connected to the esophagus, then pour warm chemo directly into the abdomen and leave it for a few hours so it can attack and kill most things. If it doesn’t kill you, which is can, it has been fairly successful for ovarian and colon cancer.

The surgery is scheduled for 7/30. I have to be in Tucson the night/day before to clear my body of food (ugh) and then up in the AM for what is supposed to be about a 12-16 hour surgery. For those keeping score, you are welcome to pray, hope, etc., that this time I don’t get woken up 2 hours later as this means they didn’t do the surgery because they found things too bad to execute. Basically, they go in like they did last time, there is a 34 point scale where they look at everything from my physical condition (190 lbs which is fantastic) and I actually did a light jog and biked with one of my best friends last Friday, to "is there any other sites in the
body where it has spread". Given the PET, it is all up to what they find once they are in there, just like last time.
My cancer is likely being spread by the peritoneum which is the lining in the abdomen which holds everything in place. That is why hot chemo is hoped to help kill it off (much better than intervenes). If I am 24 or less on the score, they do the surgery, if not…well, let’s hope for this not to be the case as the answer is fatal.

they say I will be in ICU for about 2 weeks (others have said 4) before I can leave. Clearly, I hope for being in ICU at all so who cares how long if I eventually WALK out.

So that’s the status of the last several weeks/months. I am sorry I did not keep this up but until this weekend, I really couldn’t. I am so happy today for going to the gym and doing some little things I have not been able to do in months (I can’t explain how hard it is to not be able to swim with my kids). Today, I am happy, very happy.

For those who are praying or whatever for me, I have the following and please do not be offended or concerned about my mental state. I tell people, "if you are praying for me, that is fine but pray for cancer to be eliminated first". I am only one person and cancer will kill 1 in 4 (or more) each year. If God has a plan, then what happens to me is already decided and that is fine. I do not want to go now as I really want to love my wife and kids for many more years, but if that is what happens, it is what it is. I describe it as everyone will die. This is a clear fact. The difference between someone else and me is simple, I see the bus coming and I don’t know if it will stop in time or not. Everyone else gets to forget
about car accidents, heart attacks, etc. but we will all die eventually. I am not at a place mentally just like everyone else and where I was 9 months ago. I think about what might be occasionally (more than those without a bus in front of them) but less than I did and instead I just speak a little more freely, tell people what I want (just in case) more often (but I’m nicer than I used to be), and love my family and friends every day. I figure this is probably the best anyone can do.

Thank you for all your thoughts, support, etc. and please don’t stop, but also don’t
forget about the people in your lives. Anyone of us could be gone tomorrow.

Sincerely,
Richard Mackey
Cancer Fighter

An Update from Richard

Here is another Letter from Richard that he asked me to post for him....

Hi to all and thanks for your continued support and prayers.

Today, we met with the surgeon again to really talk face to face on
what was seen during the surgery on the 22nd.
The results were not good. The bottom line is, it is in the lymph nodes,
which we knew. Now we found out that there are multiple
places outside the stomach which are cancerous and malignant.
There is one place on each side of the diaphragm
which can only get there via the lymph nodes. So, we know it is spreading.
There is also a place on the original surgical site which has
cancer as well. The last one can be due to several different
reasons so I won’t speculate. These 3 places (any of these)
makes the stomach removal not an option as there must be no
other sites before they can focus on the stomach. In addition,
the tumors have gone higher up the gastro-esophagus canal
but this would not have prevented the surgery. So, things are
not looking great but I keep up my hope.

I had my 3rd day of my chemo today. I am now on a 5 day
regiment of sort. The regiment happens every three weeks.
Basically, Monday is chemo (5 hours), Tuesday is additional
meds (3 hours), Wednesday and Thursday are one quick drug
(30 minutes), and Friday is the shot to make your white blood
cells come back (5 minutes). I will do three rounds of this and
then another exploratory.

There are discussions about radiation as well at this time but
nothing definite so it is just wait and see. This would not happen
for 2 more weeks as you do the first round before starting
radiation.

That is about all we know right now other than one of my doctors
has decided to leave Mayo and go back home to MN where his
family is located. Fortunately, he is just one of the two surgeons
and both have been heavily involved.

I’d like to thank all of you for your support of my family during
this time and to request you hope as well for a very good friend
who’s grandfather was just diagnosed as well. We wish him
and them all the best as well

Sincerely,
Richard

Letter from Richard

Dear Friends,
First, I would like to say thank you for all the support you have given my family during this time. It has been overwhelming to me to realize the number of people who have touched our lives.
To each of you, I give my heartfelt thanks, admiration, and love. You are very special to us. Your support, especially to Heather, Anna, and Paul, has left a lasting impression on all of us. As many know, today, I went into the hospital with hopes of having my stomach and surrounding tissue removed expunging the tumor. The procedure was to take 6 or more hours.
The first part of the procedure was another exploratory laparoscopy to review the area around the stomach, liver, pancreas, intestines, and esophagus for additional tumors and margin to remove the infected stomach.
There was no sign of additional spread to organs which is extremely positive. Unfortunately, there was not enough margin between potentially active
tumor cells and the esophagus. What this means, is the surgery was aborted and returned to oncology for additional eradication and treatment prior to attempting removal.
The current recommendation is 3 more rounds of chemotherapy predicated on agreement by my oncologist. Biopsies were performed as well and the results will be available in a few days. My response to the previous rounds of chemotherapy has been successful. At this point, I am back in a holding pattern but the next rounds of chemotherapy will be even stronger than the previous and will likely have more impact on my day to day activity level.
Clearly, the results today were not what any of us had hoped but we knew that it was a possibility. I remain realistically hopeful given the severity of the situation.
I appreciate your continued support for my family as they are the reason I do everything, everyday.

Thanks,
Richard Mackey

Todays the day

Richard was wheeled back to the OR at 7:15 this morning.... now comes the waiting part....

The importance of Cheesecake and movie popcorn

As we are counting down to Thursday morning, I wanted to give a quick update... We are heading up to Mayo bright and early for more consults and scopes tomorrow. We enjoyed a movie yesterday with the kids and a big bag of popcorn since we don't know how long it will be (if ever) before Richard can enjoy that greasey, fake yellow colored treat! Tonight we enjoyed a little date night at the cheesecake factory. The hard part now is just waiting for more information which can only come post surgery. Once I know anything, I will post it here and on Facebook. On a lighter note, here are some highlights from our trip, including Richard's debut as a cast member :)

Richard is scheduled for surgery, so we are going to Disneyland!

We have continued on our roller coaster and it has led us to a new surgeon and facility. The surgery is scheduled for bright and early on the 22nd, and a this time it does appear to be a total removal of the stomach. Given that the recovery will be quite hard with the addition of radiation on top of chemo, we opted to go to So Cal for one last family adventure to Legoland and Disneyland (we decided this Monday night and are leaving Thursday morning!)
Richard has been feel really good and has continued to gain weight. We know that it is still an uphill battle with this, but we are up for the challenge.

We were able to continue our Easter tradition of a large Easter Egg Hunt/ Potluck. There were 12 dozen confetti eggs that were the highlight of the party.
Thank you for the continued prayers, encouragement and support.

the waiting game

So we are back in a holding pattern (boo). While waiting for more answers, we have come to some conclusions:
1- Oncologists are very optimistic and Surgeons are very pessimistic
2- Drs obviously have no idea what a conference call is or they wouldn't torture the patients so much
3- Richard's mom is pretty good at Wii Bowling
4- Richard seems to be the exception to most of the side effects of chemo. He has been able to go to work on a regular basis and even do a little work outside.
5- It is possible to meet the Family Maximum Deductible in 50 days

The PeT scan is scheduled for this Wed and we follow up with the Doc on the 30th to find out the results and to see what is the next step.

The pictures are just some random shots I wanted to share because I can!
This is Anna with the "Zonkey" at the Petting Farm

finally Bear and Isis are getting along

Yes, I've been slackin on the Blog updates

Sorry to those who are wondering what is going on, I'll try to be better :)
Last weekend, Richard was ok to stay home with Paul while I was with Anna at her dance competition (she got 2 gold medals!) I will admit was worried about how this last week was going to be since it is when the immune system is most suppressed, but we did ok. Just some fatigue and discomfort from the surgical sites, but no real issues with nausea. Yesterday we enjoyed a "family adventure" at the AZ Museum of Natural History looking at Dinosaurs. We were there for 2 hrs, and the kids really enjoyed being out with Dad.
Th next round of Chemo starts on the 8th and then the PeT scan will be scheduled.

A whole new look

before
One of Anna's biggest concern when we explained what was going on was that Richard would look "weird" if he lost his hair and we were hopeful that we wouldn't have to deal with that issue. Unfortunately, last week it started falling out. However, Richard came up with a great idea.... let Anna "help" him shave his head! It was a great idea since it allowed her to take part in the "change" and not be surprised by the new look. Paul even was watching and commented he wanted a haircut, but not at home, so yesterday I took him for his cut. We just happened to take a pic of Richard and Paul last week (pre-new-dos) so I snapped another tonight showing the difference.
after

a great week

sorry I haven't posted in a while, but things have been going great for Richard!
He has been going to work for a few hours each day, and today he got to do something that we honestly never thought would happen again, he donned his referee uniform and served as a 4th official! He is having no issues with eating real food (if you can call the Intel Cafeteria that) and has actually gained weight. I am in awe of how good he is doing. He even took the kids for the afternoon so I could get some rest (I am fighting a sinus infection). I have to believe that this is all due to the prayers and well wishes we have been blessed with!
The next round of chemo starts on Monday, and we are hopeful that he will continue to improve.

So far so good

Richard was discharged on Saturday and has been enjoying his freedom :) The chemo appears to have worked some because he is not using the feeding tube. We have to watch his weight closely and figure out what he can eat, but it is better than being hooked up. Yesterday we went to the Dr to schedule his chemo appointments as well as got better instructions on the does and don'ts. No major restrictions this week (Dr kept saying "just use common sense"), which is nice :)

finally some good news

it has been a crazy couple days! Richard's surgeon seems to have gone MIA and we couldn't seem to get any answers regarding when he could be discharged, so we finally had to become "those kind" of people and start bugging the staff for answers.... but it worked :) As of 5pm today, he is cleared to come home tomorrow as long as we get the home health care set up! We also got to surprise Anna with a short visit in the waiting area. It has 16 days since she has seen him so I took her after her performance tonight and both of them were all smiles.
Tomorrow will be more straightening up of the house (it is just amazing how quickly this place can explode!)

Everyone is breathing easier :)

The restrictions have been lifted and you no longer have to wear a mask to visit :) I am quite happy about this since it is really annoying to wear. He is doing really well and doesn't seem to be having any of the issues with he feeding tube like last time. Keep on praying and fingers crossed and maybe he can come him this weekend!!

The Cleaning Crew

Today, I saw something I never dreamed of... Intel Engineers cleaning my bathrooms! Christie organized a "cleaning crew" of Richard's co-workers, spouses and friends to clean the house so it is safer for when Richard comes home. I will admit that I am not in to cleaning, let alone the "deep cleaning" that is needed in this situation.
Paul thought it was cool having all new people to talk to, and Anna actually missed the whole thing since she was at Girl Scout Science Camp, but she has promised to keep her room "beautiful". Now we just need Richard :)

Day and night

I can say I was honestly amazed at how well Richard was this morning!!! He was up, walking with minimal pain and in great spirits. He was even drinking sips of water without any adverse effect....this is the first day in over a week that I have felt lifted in his progress. Keep the good thoughts and prayers coming - they seem to be working!

Better Meds make for better days

So this morning Richard had to have minor surgery to redo the stitches that had let go which gave his team the opportunity to take another look at what is going on. The good news is that nothing is worse and the feeding tube should be usable, which means he "might" be able to come home sooner than later (yea)
Also, they have found a combination of meds that help with the pain, but don't make him sick (which is what caused the stitches issue). He still gets a little loopy but seems m comfortable overall.
We are holding off on connecting the feeding tube at least another full day to give his body a chance to heal up a bit.
Tomorrow I will only get quick visits but I am excited that my dad will get to see Anna perform again (this time with the full team) before he leaves Sat. She'll be at Basha HS for the half time of the Basketball game if anyone wants to join us!

Best way to get updates!

So I finally got around to putting this together :) I have been over whelmed with the love and support that has been pouring in over the last week... it is truly amazing. I light of the number of emails requesting updates or ways to help, I have created this blog. I will post updates as they come in as well as use it for "calling the troops" if I need help. Please feel free to post comments as well.

I hope this works for everyone!