Wednesday, October 28, 2009

Update on my dad and a visit to Yakima

It has been just under 2 months since my dad was diagnosed with cancer. I really can't believe that it has only been that seems like several months have passed. I think that is just because so much drama has happened here. Anyway, I decided that since things have calmed down just a bit at home, I decided to make a quick trip over to Yakima to see my dad and take him to his treatment.

He is doing radiation five days a week and then chemo on Wednesdays, so I came for a chemo day. I came over last night since he needed to be at the center at 8:30 am. The ride was beautiful, I forgot how beautiful Yakima can be. I think that part of it is that I have such negative emotions attached to this place. But if I look at it more objectively, it can actually be a rather beautiful place...the city itself not so much, but the drive up here is pretty amazing.

Last night I had dinner with an old friend, and had a really nice time. I miss chatting with her. It was so nice to see her, looking happy and healthy. She was given a "terminal" cancer diagnosis in 1997. So glad that they were wrong!!

I didn't sleep well, maybe it was because of worrying about being in Yakima, or maybe just my insomnia hanging this morning came a bit too early. Thankfully I did have time to find a Starbucks (and the very handy new Starbucks iPhone app that located the nearest stores for me).

I picked my dad up and wasn't quite sure what to expect. He is now on full-time O2 (2 liters). I think that the biggest difference was the weight he has lost...29 pounds since I last saw in him September, 29 pounds that he didn't have to lose to begin with. Other than that, he looks pretty good. I think that he is losing some of his hair, but he is 69 years old, so it doesn't look necessarily odd or out of place.

First stop was blood work, then in to see the oncologist. My dad was his normal joking self when the nurse came in. She was a new nurse to him, so he started out with his joke routine. I nearly fell out of my chair when I heard the word "penis" come out of his mouth...but fortunately the nurse didn't seem to mind or be offended :)

The oncologist told dad that he needed to gain some weight (told him that he looked like he could be in a holocaust movie). I didn't particularly like this doctor. He didn't introduce himself to me or ask who I was. He gave us very little information and I really didn't get to ask any questions. He even prescribed a new medication but didn't tell us. He just handed it to the nurse for her to get it. I don't know if this is normal protocol for this doctor or what, but I know that if I were there regularly I would either get a new doctor or have some words :)

Anyway...after that unhelpful exercise we went into the infusion room. This was the first time that I have actually been in one of those rooms. I have caught a glimpse of the infusion room at the Polyclinic several times as went to my allergist, but have never been in one. So, that was an experience. I also realized when I got inside that it was likely the room where my aunt died a couple of years ago. She was diagnosed with cancer and went in for her first chemo treatment and then died during that first treatment. I am not sure why it never occurred to me before I went there.

Dad handled the chemo procedure well. This was his 5th chemo treatment, so he has been down the road before. It was just obvious from some of the other patients that they didn't tolerate it as well. Dad's sister came for a bit and we chatted a bit, and then she went to help Dad's wife set up a new bed for Dad (he can't sleep in his regular bed because of his "wound" from the radiation). Dad slept a bit during, and I did a little knitting. The treatment last about 4 hours total I think. After his infusion was completed, the nurse came by and changed his PICC dressing.

Then over to the radiation suite. Luckily this center has everything in the same building...the doctor's offices, the infusion suites, the radiation area, etc. It is decorated like a lodge with "log-esque" furniture and fake creek outside. A bit cheesy to me, but nice that they really tried to make it a comfortable place for the patients. It was busy and there were many "sick" people there, but it definitely didn't have that sterile "sick" feel. It was quiet and a bit peaceful. Which I think is really great. I wish more medical facilities paid attention to aesthetics. I know that medicine is the primary purpose, but other things are important for healing too.

Anyway...we had quite awhile to wait before the radiation treatment, so my dad told me a bunch of stories. We had been estranged for quite a long time (he was an alcoholic and left my mom when I was 7 and then he basically disappeared until I was 17. I tried to let him in, but couldn't deal with it, so haven't had much contact with him. Some letters, a couple of visits, but not much. But I think that I have finally let go of a lot of that stuff). So, he was telling me a lot of stories that I have never heard. Fortunately this time the stories were not the hard to hear type.

Finally he went to radiation and I picked up his prescription at the pharmacy. The radiation is really quick and so we were able to go home. He was tired, but I think that he didn't want to lay down because I was there. I talked for a bit, but then told him that I needed to go so that he can get some rest. I will go back by in the morning before I head out of town.

All-in-all that was a pretty good visit. But I am definitely looking forward to going back to Seattle tomorrow! Had a good visit with my grandmother too (but that is probably for another blog...I need to get to sleep!).

Tuesday, October 20, 2009

Is it okay... not be okay? I feel like everyone in my life is worried about me and I appreciate that, but frankly I am tired of talking about what is going on and tired of convincing people that I am okay. In fact, I really don't think that I am okay, but somehow that seems "okay." (ironic I know). I am tired and worried and don't know what we are going to do in the long run. I am tired. Particularly tired of working so hard to be okay. I want to just be and let myself be a bit broken for right now. **sigh**

Tuesday, October 13, 2009

Can't believe we are here again

After the seizure on 29th things calmed down. Gess was not admitted to the hospital, so we went home. The first couple of days were hard because we were both so anxious. But, we got through them and to my astonishment, Gess decided to stay in bed, get a lot of rest, and not rush back to work. He had some issues with depression and anxiety, but that will be for another blog entry. He started to feel better. We went to clinic and the doctors didn't have much to say. They told him to stop the IV antibiotics because he suspected that one of the drugs may have contributed to the seizure. His blood pressure was high, but the doctor thought that was caused by the remaining edema, so he prescribed a diuretic. He continued to rest, started to feel better and was anxious to go back to work. He still took it easy, going in for an hour or so on Friday.

Yesterday we went to a diabetes appointment in the morning. His blood pressure was down and he was generally feeling good. He went to work with no problems. When he got home we had dinner and watched some TV. Everything was fine and he was feeling fine. Until 10:00 pm. Suddenly one side of his body went numb and then there was pain in the back of his neck. Then he started coughing up blood. About a cup, bright red.

We knew that meant we needed to go to the hospital so we went upstairs and he started to feel worse. He reported a very sharp pain in his right lung, causing him to tense up and double over. He said call "911." So for the second time in his life....but also the second time in a couple of weeks...I dialed those numbers and within minutes the room was filled with firefighters. They checked him out and Gess started to feel someone better. The numbness was gone, but the whole thing was so strange, the firefighters urged him to go to the ER, and he agreed. Thankfully I was able to transport him and we didn't have to wait for an ambulance. The container with blood in it and his shortness of breath got him right into triage and allowed us to bypass the waiting room. The ER rooms were full, so we got a bed in the hallway. Tests, blood draws, xrays. Pain "spasms" continued and the doctors wanted to admit. It was after 4:00 am by this time, so I went home to try to get some sleep.

They admitted him to the ICU because of the weird chest pain and the bleeding. I slept, but not much and not well.

Today has been uneventful so far. He has slept on and off. No more numbness, but the pain keeps coming back. It is not predictable in nature at all. The episodes may be 2 minutes apart or 2 hours apart.

One of the doctors has a theory about what is causing this and it has to do with the chest wall affixing itself to the lining of the lung (or something of that nature). They are going to do a CT Scan to test the theory. That will be tomorrow. For now they are getting ready to move him out of ICU and down to the medicine floor. I am glad that he is not "sick enough" to need the ICU, but will miss the great nurses here. It makes his life much easier when his nurse responses to calls quickly and comes in to check on him regularly. Life on the floor is not as good.

The plan for now is to hold him at least 24 more hours and see how he progresses and what the CT shows (if anything).

We are both frustrated with the events. He is freaked out about work and I am freaked out that I am unemployed and not able to provide so that he can just stop working if he wants to. Of course, he doesn't want to quit working. He likes to work. He was talking about short-term disability through work, but the coverage is only 60% pay so he said he wouldn't do it. If I were working, it might be different, so I feel guilty. I need to find a job. But, if I do find a job, I won't be able to do this hospital every other week thing either. So, really it is a scary position that we are in.

Honestly he doesn't seem sick enough to need to be on disability. But, at the same time, he keeps having these strange things happen that land him in the hospital. They all seem unrelated. His lung functions aren't affected. They have basically been the same for the past 5 years. This doesn't seem to be infection related. He feels fine and just finished a course of abx. So, it is actually a very frustrating course of events. He will literally go from feeling good to being in the ICU in a matter of hours. There isn't a progression. It isn't predictable. It is nothing and then panic emergency. And then back to nothing again. It is exhausting.

Friday, October 2, 2009

How to ask for help

When Gess is sick, several people ask "Is there anything I can do?" and my standard response is "Thanks, but we are fine." Mostly because I do feel "fine" and don't know what to ask for. But as things have changed, I know that I probably need more help, but I am not sure what to ask for. I am so used to doing this all by myself, it is just hard to envision having other people involved. We have started to have one couple more involved. They will take Gess to the hospital and they watch Beauty. But, there are other people that want to help and I honestly just don't know what I can even ask for. It is hard for me to ask for help, period. Even more so when I don't know what to say. I have the best friends and they really do want to help, and I know that I need to let them help. I just have to figure out how.