Journey with Cancer

Hi all.

Just wanted to update everyone. I had the lung biopsy yesterday in San Francisco by Dr. Mario Pompeli. The surgery went so well that they sent me home the same day. Even when in pain it’s nice to be home, not in the hospital. Home just has a comfort to it. But, oh man, does my neck and throat hurt! Hard to swallow. Hard to turn my head from side to side. But I can’t wait to hear what the results are. I don’t know how long it will take. I just want it to be a definative answer so we can make a new plan of attack.

Either way my mastectomies are scheduled for April 20 (the day after our 21st wedding anniversary). I am meeting with a platic surgeon next week to see if we can do reconstruction at the same time. If not. they let you heal for several months and then go back and do the reconstruction. Either way, California law requires that your medical insurer provide reconstruction surgery if you want it. And I do.

Then, depending on the results of this biopsy, I may have more chemo or may have radiation. This may also effect whether I can have reconstruction now or later. I will try to keep folks up to date.

Stephanie here:
Awesome news! Shauna just called. Her surgery went so well they sent her home. They are just leaving the hospital in San Francisco headed home. She is groggy, tired and a little nauseous but otherwise fine.

Tricia has been home sick with a cold for more than a week. I have done my best to limit my exposure but when its just the two of us home all day, both sick, there is bound to be some interaction. So the night before my pre-op appointment in San Francisco I started to come down with a cold.

So the next day Craig and I went to SF to meet the surgeon, anesthesiologist and nurses who will be involved in the surgery. The doctor described the procedure. He will cut me near the base of my neck about 1 to 1 and 1/2 inches (near the trachea) and put a tube in, a laser camera and a device to cut out the sample. He said it is relatively simple unless they make a mistake and do damage to some of the major bood vessles in the area. If that happens they will cut me from neck to base of the sternum (think open heart surgery type) to get to the damaged area and fix the oops. He says this happens in less than 2% of these surgeries. Since I am traveling all the way to Sab Francisco for a specialist we don’t expect this to happen.

We also talked about the cold I was starting to get. It was determined that I should go home, isolate myself in my room and do my best to kick the cold. If my lungs are compromised with an infection or severe coughing and they go ahead with the surgery then there is a risk of getting pneumonia and I could die. However, if all I have is a sore throat and a runny nose, then we move ahead and do the surgery. The doctor thinks that I may only have to stay overnight so not much reason for visitors but feel free to call. I will also have Stephanie post on the blog the news when I am done with the surgery, or if surgery gets postposed.

Crajg and I have booked a room Monday night at a place about 2 miles from the hospital. Since we have to be there at 5:30 am I wanted to sleep more and feel better when we arrive. I can have my anti nausea meds but I can not eat anything so the closer we are to the hospital the better. Less time to feel hungery and nauseous.

Craig will be there for the surgery and until I get settled into my room. He will be there for me when I get to go home. He has been there for me when I have needed him. I thank him of course but I also owe a debt of gratitude to his boss, Lisa, for working with him regarding all the time off he has to take. She is also getting things ready for when he needs to take several weeks or even a month to care for me after the double mastectomies. Thank you Lisa! You’re the best!

I have a pre-op appointment on Friday and the surgery is scheduled for Tuesday March 28 at 7 am. We have to be at the hospital in San Francisco at 5:30 am. I think we will look for a cheap hotel in SF to stay Monday night. At least I will be able to get some rest the night before. The average stay after one of these procedures is 1 to 3 days.

Had another good conversation with my oncologist today. I will be seeing a thoracic (chest) surgeon at Kaiser San Francisco and will have a surgical biopsy there. This should occur within the next week or so. When I have a surgery date I will post it here. My onc and my onc surgeon want my mastectomies two weeks after that. That surgery will be at Santa Teresa. Again, when I have a confirmed date I will post it here. At least now while we wait for the new biopsy results we will be doing something. I always feel better when I am doing something to attack this stuff. Sitting on my butt and waiting, not knowing, that’s hard.

Well, crap. I heard from my oncologist today. I clearly should not have pressured the nurse praticioner to tell me the results of the biopsy because there was more to it. My oncologist beleives that they didn’t get a good sample during the biopsy and that’s why the results didn’t say cancer. The doc is looking into other biopsy methods. One possibility is sedating me and going down my throat into the lungs to get a sample. Another possibility is just cutting me open the standard surgical method. I have an appointment next Monday where we will discuss the options.

I’ll admit that the news made me very fragile emotionally. I put myself right back into Stage IV and all that means. But a dear friend reminded me that this actually just puts me back into “I don’t know what is up with your lungs” and that is a better frame of mind to be at. I hate the waiting and not knowing but that’s where we are and I will just have to deal with it.

I have partial news about my lung biopsy. The good news is that it isn’t cancer. Could possibly explain why the chemo is kicking butt on the breast and lymph nodes but has had no effect on the lungs. Bad news is they aren’t sure what is it. I have about a dozen or so small spots or nodules in my lungs. They light up on a PET scan just like cancer. But the biopsy of one of the nodules came back as not cancer. My doctor is checking with other doctors, getting other opinions. If its true that these really are not cancer then I am NOT Stage IV. Not terminal. Actually, possibly curable. Of course I will still have to contend with whatever these foriegn bodies in my lungs are, but not cancer is amazing! I just can’t do anything the ordinary way.

As I know more I will post it here.

Monday morining started with me feeling ok. Tylenol pain level, not vicodin level which is always a good sign. Went off to an appointment with a group called Families Can. They help families with cancer with monetary grants. I had to provide financial info from last year versus anticipated finacial info for this year. What I asked for was the money to pay for Tricia’s braces. We still owe about $2100.00 which we pay $156 a month. That would take a big burden off our budget and free up another $156 a month. I also learned about another charitiy that may help pay for the co-pay amounts on the prescription drugs I have to take. The anti-nausea, pain medication and white cell generation drugs. This foundation may pay between $150 to $300 a month. That would be another huge help.

It was also a day of seeing old friends. Stopped in for a few minutes to visit with freinds Dorothy and Terri. Had a fun few minutes of catching up.

On the way home I was passing by my old work place, Eagle Business Products. I hadn’t heard from the folks there since Christmas - I got this great Ghiradelli chocolate tower gift - so I thought I should stop in. It was a weird kinda karma thing, since as soon as I walked in they said “did you just get my message?” What message? They had called the house and left a voice message on my machine. They had been thinking of me at the same time I was thinking about them. Wild, huh? We talked for a bit. It was good. Brock lost his mom to cancer and it was good to hear from him about some of the things he and his family went through.

In the afternoon I took Tricia to her orthodonist appointment. She had several wires and brackets break during February but we just couldn’t get her in with me being in and out of the hospital. Her doctor came out to see me and see how I was doing. He was very kind. He scheduled Tricia to return in 2 weeks to finish up the repairs needed.

Monday evening was hockey night. Met with Stephanie, her friend R and our friend Mike at a place called Emma’s down on Santa Clara street. Food there didn’t do anything for me but everyone else seemed happy with their food. We then jumped in Steph’s car to the arena. Mike and I were in my seats in 112 and Steph and R were in 218. It was an exciting game. Sharks won and Cheechoo scored a hat trick. I was thrilled to see the hat trick but was not willing to give up my beanie cap. I just don’t have enough hair yet. I took things slow and was able to have a great evening out. I collasped into bed soon after getting home. All in all a very good day from start to finish.

Well, here it is Saturday after chemo and I am still at home. No fever, no infection and no trip to the hospital. I am very pleased. After Rounds 6 and 7 by now I would have a fever and be in isolation at the hospital.

Tricia played in her first lacrosse game this season. She is happy to be back playing for the San Jose Extreme. Craig drove us and I stayed in the car and watched from the warm comfort of the front seat. I didn’t want to be around anyone who might have a cold or anything.

If I am still feeling good I will be going to the Sharks game on Monday with my friend Mike. I need to get plenty of rest between now and Monday eve. I also know that I have to take it real easy when ever I go out. I just don’t have the energy I used to. If any of my hockey friends are at the game Monday please come down and see me - clearly I won’t be moving during intermissions - I will be in Section 112 row 5 and would love to see you.

Stephanie here:
Shauna had her last scheduled round of chemo on Monday. No one knows if that was really the last round because it will all depend on the results of the lung biopsy taken last week and no one seems to know when those will come back.

I had lunch with her today and she seems to be doing all right. They reduced her dosage by 25% and had her start injecting herself again to keep her white blood cell count up, as well as the antibiotics for thrush. It’s all in the hopes of keeping her out of the hospital this time.

She says the pain is managable with Tylenol, no Vicodin level of pain so far. She had enough energy today to get to the grocery store and then have company for lunch. I helped lug groceries in and then we sat and chatted and watched NCIS while we ate. I can tell her appetite is starting to return. Now, instead of just nibbling around the edges of a sandwich she eats half of it with gusto.

She has lost so much weight, it’s simply amazing. But! Her hair is growing back in and I can definitely see it’s starting to cover her head once again. There should be enough to take pictures of soon.

Shauna, you are my hero and I am proud to be your friend. You rock girlfriend!