From Philip

The following is from Philip. There have been changes to this. The doctor has discontinued the chemo pills due to side effects. They are now more concerned with the results from the genetics tests before deciding on another course of action.

Health Update: We have more info and treatments starting.

The good news is the MRI showed no signs of spreading to lymph nodes or other organs, however it has spread outside the muscle lining of the colon. It is considered stage 2 at this point in time. With that being the case, the surgeon and oncologist want me going through an estimated 6 months of chemotherapy and radiation to help shrink it and keep it from spreading before a surgery date is set.

They are also doing some genetics testing to make sure things will be ok for me. Currently they have prescribed me a pill form of chemotherapy. No radiation at this time until the genetics tests come back.

I want thank everyone for their support and care at this time. A very special thank you to my family for their help with all of this and to Mikala Nelson for being an outstanding partner and helping me deal with so much of this.

MRIs (Plural)

Yesterday's MRIs ended up being at 9:40 p.m. both with and without contrast. So Philip (and Mikala) ended up there for quite some time. However, they are done so when the oncologist schedules, she will have results. 

On that note, it's time I gave some credit where it's due. Philip has a girlfriend named Mikala. She is an absolute Godsend. I used to work with her dad and was shocked when Philip told me who she is. They have known each other for some time (over a year). 

Mikala used to work for a medical company and knows which offices in the valley have competent staff. She also calls ahead of time for his appointments to check that his test results were sent. Doesn't mean the staff won't change their story once we arrive. But it does mean she have a point of contact to go back to. So, shout out to Mikala. Thank you for everything!

Update

The appointment with the urologist yesterday gave us some new information. The next steps include an MRI and consultation with an oncologist. Depending on when she can fit us in, it may be a couple of weeks before we know any more. So nothing is really going to be happening for a couple of weeks. I will update again when more info is available. Hugs.

Round 3

So here we are again. Philip has colon cancer. I will try to keep this blog up to date for those who want more than just a short answer over the phone. So far...

• It does not look aggressive
• It is in the very early stages
• It is most definitely operable

He is trying to get an appointment with the surgeon to talk about when they'd like to do the surgery. It will most likely be in the next few weeks. We will be staying at home for the holidays due to this and LK's foot surgery. I'll post more information as I receive it myself. Hugs to all.

Never Have I Ever...

...Wanted to post another thing to this blog. But here we are. 

More to follow, when I'm sober.

Numb. And not the comfortable kind.

So, after three surgeries (yes, three) Gregory is now headed to 12 weeks of daily radiation (yes, daily). He has his spirits up so that's a good thing. Call if you need more info.

When It Rains...

OK, so, the week is over and I feel a little safer posting.
Sunday - Go to work to make up some hours for Monday.
Monday - Gregory's second surgery. Doc wants to see us Friday for results.
Tuesday - Short reprieve.
Wednesday - Out to the garage at 0430 to go to work. Pipe has burst and there is now a hole in my wall and the bottom of said wall is leaking water for about 10 feet across. Call plumber and leave for work. 
Plumber comes out after work - $1600. But they don't fix flooded walls. Call flood control guys. 
"~$6000 AND we have to get authorization from your insurance company." 
Insurance guy - "We'll get back to you in the next three working days." 
Me - "But that means leaving it for the weekend. We are having monsoons here. It's going to mold." 
Insurance and Flood guys - "Probably." 
Me - "Everyone out!" Call Friend Richard. 
Rich - "I'll be right there." Comes out immediately and drains the wall saving me from filing insurance claim. Fireman from next door brings fans. Boyfriend Steve pours me a drink and keeps it full.
Thursday - Sitting in office and the air conditioner starts making VERY bad noises. Call the plumbers back and ask for air guys. Can come out tomorrow.
Friday Morning - Head to doctor's office. 
Doc - "Oops, no results. Come back next week." Drive back home.
Friday Afternoon - Air guy comes out. "Um, that unit is bad and going out. Let me check the attic." Comes down from the attic with pictures. BAD pictures. Well, at least it's the same unit. 
Me - "What's it gonna cost?" 
Air guy Phil - "About $10K." 
Me - "And insurance won't cover that, will they." 
Air guy Phil - "Nope." 
Boyfriend Steve pours me a drink and keeps it full. Schedule crane and installation for Saturday.
Saturday Morning - head to work at 0450 to make up for upcoming Friday.
Saturday Afternoon - Crane and new A/C shows up. Takes all day but they are done around 1800. Boyfriend Steve brings dinner. I pour me a drink and keep it full.

Oh My Soul

No posts in quite a while, I know. The good news was a false alarm and we've been dealing with the misdiagnosis. I was very relieved and happy to hold on to "it isn't cancer" pronouncement but I'm not stupid. I knew that we needed a definite answer to what it actually was. We headed to a very good general surgeon. So good that the tests she ordered were much more accurate than the CT scan Gregory previously had. It wasn't conclusive but the MRI showed it wasn't just a sebaceous cyst. She sent us to an excellent oncological surgeon. Long story short he was headed to surgery. I won't go into the quantity and levels of meltdown which occurred due to tests and other stresses, but it was significant. And not just Gregory.

After surgery, the labs came back showing it to be aggressive fibromatosis (also called a desmoid tumor). While not a traditional sarcoma, it 1) can kill you, 2) can come back, and 3) does respond to chemo and radiation in some cases. The trick is to get it out with a wide, clean margin around the tumor. For more information on this see Treatment of Soft Tissue Sarcomas at the American Cancer Society webpage. Fortunately our surgeon did get clean margins. We were to return after surgery to check the incision and then every three months after that to watch for recurrence.

Our first three month visit didn't go well. Something had started growing. So our doctor had us come back in a month. That appointment was Friday. The new mass shrank from the previous month but is now more painful. There is a very good possibility it is epidural fibrosis (a bundle of nerves getting pinched by scar tissue and fibrous adhesions). The surgery to remove this is significantly less invasive. Gregory has requested a general anesthetic to avoid meltdowns during the procedure. Mom concurs. The doctor's office will call us in the next week or so to schedule things. I'll post when more information is available.

And We're Clear

Thank the good Lord, it is not cancer. If we find out what it is when (and if) it's removed, I'll post. But it is not cancer.

Inconclusive

At  least that's what the doctor said about the ultrasound results when confronted by these three.

Yes, they went to the doctor's office with Gregory and me. Yes, they made comments afterward that would have made the Sopranos proud. "It's good news, right doc?"

So Gregory is now scheduled for a CT scan next Thursday, October 6. We get results from that test the Thursday after that (October 13). I have no doubt at least one of Gregory's "enforcers" will be present for both appointments.

Cars and Luck

So Saturday morning I grabbed my keys and headed out to do errands. The Kia had a check something light on when I drove it on Friday so I grabbed the keys to the 300. It needed gas and air anyway so those were the first items on the list. Or they were until the car wouldn't start. First thought: Did I kill a unicorn or something?

Fast forward to Saturday night. The Kia's light was just the tire pressure but we did find a squirrel had been living in the engine compartment. Acorn shells everywhere. I'm thinking those hamsters had a party and invited the messy squirrel.

The 300 just needs a battery. Or a charge. I'm not sure yet.

Ultrasound Complete

Now we head back to the oncologist next Thursday so we can get results. We won't know anything for certain until then. Well, except for the fact that it is NOT a vestigial twin. Thank goodness for small favors.

Ultrasound for Gregory

So we have an appointment for an ultrasound tomorrow at the radiologist. Then we go back to the doctor next Thursday for the results. At that point he'll tell us if a biopsy is needed or if, as Greg says, it's just a vestigial twin.

I hate Family Guy.

Our Gregory

Here I am again. Wishing to God I weren't. Our Gregory saw an oncologist today. He has a lump on his torso under his arm. Both his regular doctor and the oncologist agree it isn't an infection or fatty cyst.

So... ultrasound and possible biopsy later this week then back to the oncologist a week after that for results. You'll know when I know.

Rearranging Things

I always seem to be rearranging things. Maybe it's part of trying to find a new "normal." I only do things little by little since I'm not sure exactly where it's all going. Also, the boys are no help at all so it has to go slowly. I did start putting up paper in my bathroom. The other walls I'm going to paint. Eventually. I even have the paint already. I suppose what I need more than anything is the conviction that what I think will work, actually will.

My office is in constant flux these days. Anything I don't know what to do about goes in there. I'm not even sure it's an office anymore. I don't work too much at home anymore. Maybe I should get rid of the desktop computer and opt for using the laptop. No clue.

It's not the decor so much as the utility that gets me stymied. I need another set of eyes. No family around means sitting and planning alone. I hate that. So if anyone wants to come help, I could use some fresh ideas on changing around rooms and purposes.

In a Lifetime of Calculated Risks and Smart Moves...

Today would have been our 28th Anniversary. I'm ok with having made it to 25. Smartest thing I ever did was marry this man. And that's saying something.

Rest in Peace

As of February 25, Mike is finally free of cancer. I apologize for waiting until now to post but I just couldn't face it.

The service in Las Vegas was held on Friday, March 1 at St. Viator Church. There is a second service to be held this coming Friday, March 8 at 10 a.m. in Corona del Mar at Pacific View Memorial Park, 3500 Pacific View Drive. Afterward, there will be a reception in Fountain Valley at my mother's house.

Little Things Become Big Things

When the little things in life become the big things, the big things must be put aside. Little things like going to the bathroom; keeping solid food down; managing pain; these have become the focus of daily life.

Not since Gregory was little have I watched and waited so much for just the littlest victories. Philip has joined the fight by offering to get up in the middle of the night if needed, so I can sleep. This too is a little thing that seems huge to me.

It's appropriate I think that the humming birds in the front yard are so vocal about having their nectar put out for them. They are another of the little things that dog me but make for a joyful result.

Mostly over the flu

Except for the fact that this virus tends to try making a comeback if we don't stay vigilant, we are mostly over the flu out here. Mike has had some good days but also some fairly difficult ones. Give us a call on the mobile phones if you'd like to visit.

Hospice

After fighting this thing with every available option, Mike is simply too worn out to continue having chemo. This week we started hospice at the house. Just the fact that there will be no more chemo is such a relief. He is just too tired and getting no benefit from it whatsoever. The numbers just keep rising. We are working with Nathan Adelson Hospice.

At this point in time, the rest of us have the flu. I know some people have asked about visiting and we want to have you over. You are welcome to give us a call pretty much any day. Just be warned that right now is certainly germ warfare offensive time. I'll let everyone know when we are finally rid of it.