Tag Archives: realizations

11 Months now On TPN. Not doing so well.

It has now been 11 months since I started back on TPN. After a string of really bad bacterial infections they started to use my port for everything. Well I guess the port did not keep out the infection or it was never cleared to begin with.

About two weeks ago I got super sick again. I would have going to the ER the night before, but in all honesty I did not know how bad off I was. By the time my home health care nurse and her supervisor got to our apartment, I was not coherent and my fever was over 105. I was hallucinating and just not in good shape. My heart rate was erratic at best and I was floating in and out of consciousness. The nurse told my hubby it would be a huge risk for him to try to take me on his own. So they called 911 and asked for a special ambulance with cardiac equipment.img_20150807_105514

I am guessing it took them hours to bring down my fever and to get me stable enough to move me to a monitored room. One step down from ICU. After a few days I was moved to a regular floor and they put in a new PICC like for the TPN They wanted to take the port out right then, but my blood numbers were still not where they should so they were going to wait till end of weekend.

Then I found out they were going to do lung biopsy day after I got home the port removal next day. I kind of told them to go to hell. I was still/am still recovering from this horrid blood infection. I am sure my Dr.s are not happy with me, but I have good reason. The dr who was going to do the biopsy is not even board certified. That to me made NO sense. With my history with procedures and things going sideways fast. Just not a good idea.

I will see my regular dr today in hopes he can get me someone with the credentials to take the port out.

I have about 1/2 a dozen or so tumors in my lungs that need to be taken out. I am not happy about the fact that Kaiser is going to be doing it. I am scared, last time was just one tumor and the surgery went sideways at the end. This time we are dealing with so many more. It just scars the crap out of me.

So I should do a bit more of an update on the family front. PA started having seizures again. So she is back on medication. We are having to home school her and this is NO walk in the park. Shann was easier to home school by far that PA is. Oh My Heck this child is worse than her sister ever was.img_20150619_173119

We have tried it now for several months now and we need to go back to regular school. She just is not doing well and is so hard on me. I am spending so much more time in bed I just can not keep up. Then the house work. I keep falling so far behind I use to keep a very clean house. Now on a good day I can hardly just keep it picked up, let alone clean.

OH!!! The best news of all!! My oldest daughter Shannon and her Husband David are expecting. Due date is July. I am excited for then, but I am not sure if I am ready to be an Oma img_037988

Results, reflections and what it all means

A few weeks ago, I wrote about my experience with the gallium scan at Stanford and the procedure I had done. What I did not write about were the results and what it means for my future.

They were not able to use any samples from the biopsies taken from my pancreas. Apparently that is common because the needle they had to use is so small and the area was so hard to get to. There were just not enough cells in the sample. They will have to try again in 6 months to a year to be able to biopsy again. The main reason I have to wait so long to have the procedure again is my Dr. is afraid I am not strong enough at this point. The pros do not out weigh the cons. He feels I would end up in hospital for several weeks after and my health would decline.

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What they did find was I do have several small tumors (too small to biopsy at this time) as well as moderate chronic pancreatitis. Now I get to drastically alter my diet for both issues. If I don’t alter my diet I will end up very sick and not able to eat at all. I would then be hospitalized and be put back on TPN or be tube fed. Changing my diet should mean less time in the hospital. I still have and will have lots of pain when I eat and I do have to take pain medicine, but as long as I stick to the diet I am much better.

The diet I have to follow is not fun and I no longer get to eat out. I had to cut out all dairy, sugar, gluten, soy, and nuts of any kind or in any form. Had to cut out as much fat as I can (no fried food) no red meat, pork, chicken & most turkey. I can have some fish, but no shellfish because I am allergic. I can’t have tropical fruit, citrus, tomatoes, avocados and anything in the cabbage family. Also have to be carful with beans and all vegies have to be cooked well. I can have a few eggs here and there. I also have to be carful with potatoes (no skin on them) and minimize how much white rice I have (brown is preferable).

Seems pretty restrictive huh LOL… Well it is, but I am learning to work with it. When I explain to people how I eat just to simplify it I say that I eat a vegan, GF diet with no nuts. It is more complicated than that, but people seem to be able to grasp and accept that a little better.

The other thing my GI specialist told me no more over the counter pain medicine. He said it will aggravate my condition and he wants to know exactly what I am taking at all times. He went as far as to put in my chart allergies to ibuprofen and Tylenol products. Just so no other Dr. would order them for me if I were hospitalized.

He also put me back on octreotide injections to help control the Carcinoid Syndrome symptoms. This has helped greatly. It has made it so I am able to get back to doing some of the things I use to. Things like cleaning house and playing with my youngest daughter. It has made it so I am not as sick all the time.

I am grateful for this even if it s just a few days out of the week. I am not as well as I have been in the past. He explained to me that this is chronic and progressive. It is something I just have to accept. I should enjoy the good days and rest on the bad days. I should not dwell on how awful this disease is and how it is robbing my health and me of time.

So my focus now is one getting stronger and make every day count. We do struggle with bills and trying to make ends meet. That’s the other thing being terminal and in and out of hospital is expensive and well bills pile up. Pretty sure we will not be taking a vacation anytime soon or ever. I had wanted to be able to see my mom and her family again, but don’t think that’s going to happen. At least we have social media LOL…

I’m bored & was accused of hovering

I’m bored & my husband has accused me of hovering. I asked him what I should do and he told me to write a blog post about being bored. So here goes and for the record he cannot come back and say anything because he told me to do this.

I’ll admit it I don’t entertain myself well & after I have been sick for a few days I need to get out to do something. I already picked up the living room & have dinner in the oven and to set the record straight I did try to entertain myself. I went on to Facebook no one really was on line so I could not chat with anyone. Unless you play games (which I do not) then Facebook becomes boring after about 5 minutes. I went onto Pinterest too & well nothing was peaking my interest there either. I trolled Twitter for a bit & you guessed it. It did not really pull me in either. I also thought about some of the unfinished projects I have, but soon realized I needed something for just about everything so I was back to not being able to go anywhere. Besides sometimes I just want to be entertained. Is that so bad?

See everyone in my household all have something they go & do during the day. My husband has school so he gets out most days to study at our local Starbucks and has school every Wednesday night. My 17 year old has High school and also has church activities every Tuesday night. Even my 4 year old has school most days. Even if it is just 4 hours a day even she gets out of the house.

The only time I get to get out is when I can con someone to take me.

Unfortunately I cannot just get out of the house on my own. See I am not able to drive any longer because of health and vision problems.  I have to depend on others for rides. Usually when I am bored & want to get out to do something, I just hover around my husband & he usually gives in. Right now I can’t think of anything to do that doesn’t cost money & somewhere I don’t have to walk too much. Being it is getting ready to storm outside he doesn’t want me out in it. I feel like a little kid stuck indoors watching the world go by.

Of course there is always housework **sigh**

Bugs revisited…..

So I have written in the past about PA’s fear of flies & ants (well bugs in general). This is not a “Yikes a spider” type of thing but an out right screaming tantrum refusing to step into the room with the bug wakes up with nightmares type of fear.

I made the mistake last summer to take PA horse back ridding in hopes it would help her core strength & balance issues. Well it backfired on me. What is the one thing you cannot get away from around horses? You guessed it Fly’s & Ants. After that disaster of an outing it took her 2 weeks before she would sleep the 4 continuous hours a night before waking.

Now back to the present. We are very carful about the bug issue around here & it’s not easy because for some reason we moved to a place where the flies are HUGE and abundant. My husband is always on the look out for flies & actually carries a flyswatter around the house with him. One of these days I will make him a holster for the thing **laughing**.

So over the past few months we have not had a bug incident & no real mention of them (thank heavens). That is until very early this morning (4am to be exact). I woke up to her screaming at the top of her lungs that there were ants in her bed & just sobbing about how they were crawling all over her. It took my husband & I a long time to get her to calm down & had to move to the front room before she would calm down. Even then she was still acting like she had ants crawling on her. Needless to say she did not get back to sleep & thank heaven to my Shann (her 16 year old sister) for taking over for us after she got home from seminary (early morning bible study). My husband & I were able to get another hour or so before we actually had to get up & get going.

The rest of the morning was traumatic & she was whiny & defiant. I felt bad for sending her to school that way, but we needed a break. Now she is home & obviously tired. I still have no idea what brought this on. The only thing I can think of is that she has been picking at a hangnail she got & she is interpreting the sensation of that like she has ants crawling on her. We often have to cover up sores on her or she will pick obsessively at them until they are covered & out of sight. However she will take Band-Aids off & will not keep them on. Then she keeps picking at her sores. It really is a no win situation.

So I am left wondering how long she will not be able to sleep & how long she will keep having nightmares. I actually had thought she might be hallucinating this morning, cause she was wide awake & still was picking at her skin like she had ants crawling all over her. I am just not sure how to approach this. Even if we try to talk to her about it just makes her think about it more.

So frustrating sometimes when you just don’t know how to solve a problem like this with a small child let alone a special needs child.

Hard questions…Difficult answers

Tonight I went to a women’s church group. I like going to these because they are usually fun & they get me out of the house. One of the few times I get out of the house by myself. Not being able to drive kind of sucks & limits what I do.

Lately it has become near impossible to get through one of these evenings without having to answer some uncomfortable questions. I have come to the conclusion that people are really curious in general about death. They are also curious about how people deal with being told, “You have __ years before you will die from your disease.”

In the past I have been able to avoid these questions by turning the conversation around or jumping subjects. I have also been lucky to keep most of what I deal with under wraps so to speak. Not talking about it doesn’t work much anymore because of all the time I have spent in the hospital in recent months & people have actually found out that I have cancer.

It doesn’t bother me to talk about it. In fact anytime I can raise awareness about Carcinoid cancer the better. Being it is so rare I often have to go into great detail with people about what exactly it is & how it affects someone with it. It is fairly easy for me to talk about it because I can detach myself from it all & become the teacher. It’s easy to list facts & numbers.

Now where it gets tricky for me is those uncomfortable questions I mentioned earlier. Like I said the questions about the cancer itself are easy to answer, but when you get into the more personal questions is where I get tripped up.

I had someone ask me not just tonight, but I get this question A LOT… “How do you go on every day?” I always want to look at them & say… “REALLY?” Well let’s see, I get up out of bed everyday take my shower, take care of my kids, husband so on & so on… What do you think I do lie in bed & cry about it? I still have a family & husband to take care of. I still have a life to live. I just have a little obstacle (some days more than others) that gets in the way. I think about it, but I don’t obsess over it all the time.

  • How do you handle knowing you are going to die in a few years?

It’s not like I am going to die tomorrow. I don’t dwell on it, if I did I would be a very unhappy person & no one would want to be around me.

  • How do your kids handle this?

I dislike this question a lot. My almost 17 year old has full knowledge of what I am dealing with & frankly knows more than I would like her to know. When I was first diagnosed we took her out to a really nice dinner (she was 11 at the time) and we told her over dinner. We told her I had cancer & she asked if I was going to die. I told her not for quite a few years. She said ok and asked if she could have the shrimp. She doesn’t like it when people come over to help. She thinks its charity & she says she’s not a charity case. Other than that I think she handles it pretty well.

The one thing I dislike more than everything else is when people look at me and tell me they know what I am going through. Please don’t compare. If you suffer from an aliment which most of us do. That’s fine you are allowed to be sick to have a bad day/week/month. You are allowed to feel crummy & sick. I will not take that right from anyone, but please don’t tell me you know how I feel. Don’t tell me you know what I am going through. Unless what you have is going to kill you please don’t tell me such things.

People are curious by nature and I know that. I don’t mind answering questions from people I encourage it. For me it is the type of question. Questions like the examples I stated kind of put me in a weird place. I never know how to answer. I don’t want to come off sarcastic, but yet I don’t want to sound like I am feeling sorry for myself either. I am just living day by day the best way I know how. I still have a family to raise I still have a husband I need to be there for. I am going on like anyone would. I just have a shorter amount of time, in which get this life done right.

Importance of Journaling in my life

I have always been passionate about journaling. It was a big part of my upbringing and important to my parents. I remember as a kid being told every Sunday we had to sit down and write in our journals. My sisters and I were all given our first journals when we were 5 years old. Every Sunday we would all sit down and write something.  I remember not being thrilled about this and actually, I dreaded it for a long time. I never knew what to write and I would just sit there. Usually I wrote simple explanations about my day. It was always just once a week, but it was something my parents insisted on us doing.

After a few years I did not dread it as much. Both of my parents kept journals. I remember a row of journals in the bookshelf that were my parents. I also remember the journal was sacred. No one read anyone’s journals with out permission & was never an issue.

I did not realize it but my parents were instilling a very important skill in me. Not only did it chronicle my life. Also taught me about what and how I was thinking. Also taught me how to deal with my feelings and work through problems. I have had countless journals throughout my life. My very first one was a red hardbound journal with my name in gold lettering.

As I got older, I got better about journaling. For years I kept a journal and was very good about writing in it almost daily. I stopped journaling off and on over the years. Now looking back life was less stressful when I was journaling, because I talked things out in my journal. I used it like therapy so to speak.

When I have stopped journaling, it has always been because I am going through a rough time. Or it is because I am not ready to process something that had happened. I kept a journal through my original cancer diagnosis & subsequent surgeries. However after I had my youngest daughter and then told me my cancer was incurable I stopped writing. I think I stopped writing, because I had not totally accepted the fact I was not going to get better.

Almost a year ago I started writing this blog. This has been a journal of sorts for me. I do need to get back to actually writing a journal, because I tend to write more personal things on paper. I think I will make this a goal and work on it.

The House, A Yellow Rose Bush & My Grandma

A little over two years ago my husband, daughters & I were living in a very small run down apartment in Silicon Valley. It was a very unhealthy place we named it the sick house. It was where we had so many bad things happen. I was diagnosed with a terminal cancer. My husband had his surgeries & my youngest was diagnosed with epilepsy, PDD-NOS, SPD & ADHD. For many years I thought we would never escape it. We had many chances but none panned out. I had all but given up until I got an email from someone whom we had discussed renting from the year before.

He had recently purchased a house & out of the blue he contacted us. He said he had bought it and thought we would be perfect for the house. I was interested and asked him to send me a picture. With in minutes I had a picture. The first thing I noticed was the yellow rose bush.

I know that seems a bit strange being it was the house I was interested in. However as soon as I saw the rose I was hooked. See I grew up very attached to my grandma & gampa. Off and on through out my child hood I spent much time with them. My grandma and I were very close and she loved yellow roses. She watched my older daughter before she was not able to any longer. Before ALS took her life from us.

Back before my husband and I were married, I lived with them. My husband did not like where I was living at the time so he moved me in with them the weekend after we met. I guess a 4x8ft dirt floor shed wasn’t the ideal place for me to live. Yes I lived in a shed, while my biological mom lived in a converted garage that I paid for.

So I was looking at this picture I was sent of this house and I heard a whisper in my ear “This is where you are suppose to be”. I honestly believe my grandma whispered this to me. My proof was the yellow rose. We really had not looked this far inland and I was not crazy about how hot it gets here, but this is where we were supposed to be. I told my husband this & he was a little hesitant but he trusted me. We made the decision after seeing it once. Was a long trip just to see the house 6 hours round trip from where we were living at the time. My husband fell in love with this house too.

Was just a matter of weeks and before we moved. I organized 2 garage sales to get the money we needed to move. My husband sold our second Rodeo. We moved on one of the hottest days that year. I had called ahead & arranged for some people from our new church to help us unload the truck. All in all it worked out pretty well..

Now when we moved PA was non-verbal & hardly walking. She was 2 and just 24lbs. After we moved she really started to thrive. We were able to get her into early intervention & some serious therapy. She started to gain weight and make some real strides. I honestly think the apartment was holding her back. After a few months of therapy she was running.

I still miss where we lived before. Well the area anyway. I loved the bay area & everything about it. After all we spent the first 16 years of our marriage there. I know we had to move and I am grateful for the opportunity we had to move to a nice house. This really has been a good move for our family even with all the hardships we have endured over the years we still have a darn good roof over our head **laughing**