Tag Archives: Communication

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

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My views on Faith, Church and my Cancer

There is so much that goes along with having Carcinoid syndrome/cancer. The frustrating thing is the fact that not any two people with this have the same symptoms, or have the triggers for symptoms. With most cancers there are set symptoms and usually it follows a path and the treatment also is set, however, not with Neuroendocrine/Carcinoid cancer. We have a few drugs that help with symptoms and a few treatments that help some, but not others. Sometimes tumors can be taken out and other times they can debunk tumor loads, still others whom they can’t do anything. One thing most of will never see or hear, once our cancer has spread is a cure or the phrase “You are in remission”.

I get asked all the time if I am in remission and when I explain to them I will never go into remission or be cured I usually get one of two reactions. I get the ones who try to tell me if I have enough faith I will be cured. Then there are the others who just don’t believe it and either take great pity on me, (which I hate) or they bombard me with questions. I really do not mind the questions because they are interested and want to understand. I will usually stop and answer questions and I have gotten rather good at striking up conversations with complete strangers. I find it empowering to be able to educate people. Too bad I can’t get some of my doctors to spend a little time learning more.

To address the ones who like to tell me I need more faith. I try to explain to them my beliefs in which yes, some people are cured by faith and prayer. I know in my heart that there is nothing wrong with my level of faith. I know we are being tested in this life and this is my life and this is how I am being tested. I am not one that will be cured and there was a devotional/talk done by an Elder David A Bednar in our church (The Church Of Jesus Christ of Latter Day Saints, Yes I am LDS/Mormon) Those Facing Adversity to “Shrink Not” in which a question was posed to a young man who had been battling cancer. “Do you have the faith Not to be healed”? Here is the link in case you want to read it. https://www.lds.org/broadcasts/article/ces-devotionals/2013/01/that-we-might-not-shrink-d-c-19-18?lang=eng It was life changing for me to read this. See I had struggled with the whole faith thing for a long time. I was angry. I thought there must me something wrong with me, with my faith or my belief. I had so many tell me I needed more faith. Even the leaders in one of our old wards said that to me on a regular basis, which is why we moved. I started to pull away and question if I was doing the right things with my life. After much reflection and after moving to a wonderful ward I figured out it wasn’t myself or my faith that was the problem at all, but it was the faith of others. More that fact that they did not know or want to know about my cancer. They also did not understand me.

I have rarely discuss my religion on my blog, because most of my readers are here to read more about Carcinoid cancer or Autism, however I felt I needed too in this case. If it were not for my church and my faith I don’t know if I could have made it this far. My faith is what gets me through the day. My knowledge of the gospel and the continuing learning process I am going through helps me every day. I wake up every morning and my goal is to be the best mom, wife, friend that I can be. I try to help as many people as I can. I just try to live my life the best I can with the knowledge I have to offer. No one really knows how much time they have left here on this earth. I do know I will have less time than most, but I am ok with that. I do worry about my family, but I know they will be ok in time.

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People think they know autism when they see it? NOT

Something that has been bothering me for a while is someone who visited my family a while back & spent maybe an hour or two. This person told another friend my daughter was not on spectrum. Now this person has never up till that day spent time with my daughter. As far as I know she knows nothing of kids on the high end of the spectrum. Every individual with Autism is unique.  No two diagnoses are the same.  Just like each person has a different personality, each person has a different level of Autism.  Yet she is an expert & is now telling others that I am making up my daughters autism?

 

Why would someone make that up?

If she were not on spectrum why do I have a 2 binders 3 inches thick full of reports, assessments and doctors reports about her disability?

How could I manage to get services from a school district & have her go to a special pre-school for mild to moderate autistic kids for two years?

Then have her in a similar classroom for kindergarten?

School districts are stingy about who they give services too and unless your child has a definite disability you do not get anything.

 

I guess this person’s argument was my PA did not look or act like she was autistic.

 

So I ask you:

  1. What does an autistic kid” look” or “act” like?
  2. Can they never behave and seem “normal”?
    1. From what I remember on this day PA was stimming really bad. This person had made mention she was “just hyper.” Really? I have never seen an NT child stim because they were hyper.

 

My daughter can usually behave for company fairly well.  Really the only clues would be her stimming. Even with company she can manage some eye contact for short period of time. People who do not understand autism may think she is “normal” maybe just a little high-strung. However unless you see her on a regular basis spend a little time with her, maybe encounter her in an unfamiliar setting you will not see what we see & deal with.

 

What I would like to say to someone; who either does not believe me or doubts how it really affects us; is unless you have walked in my shoes, spent the time to get to know my girls & family; unless you have spent more than an hour or two and seen PA at her best, worst & everything in between, you have no right judging me or making a call on my child’s diagnosis.

 

In case you are curious her official diagnosis is PDD-NOS (pervasive developmental disorder not other wise specified) with SPD (sensory processing disorder), severe food aversions, epilepsy, hypertonia & chronic constipation & GI distress. PDD-NOS is on spectrum. This diagnosis may be on the high end of spectrum but it is still ON SPECTRUM.

 

Judge not, lest ye be judged.

The Tell-Tale Hair

My husband and I were on our way to my Sandostatin injection (the injection I get every 14 days for my Neuroendocrine cancer) at the hospital when we started talking about my hair & the fact I had been growing it out. I told him how much better I liked my hair long, but that it was so much work that it takes twice as much time & energy to do something with it.  However, I have kept it short for the past 6 years or so purely for the wash & go factor. He posed a question to me that I had never really thought about. He asked me if I wished, at times, that the chemo would make my hair fall out. Hmm….

I have never really thought about it but in a lot of ways, yes, I do. To be clear, I am grateful that I am lucky enough to have kept my hair & that I “Look healthy”.  I say it like that because it really is a double-edged sword. The types of cancer drug I get don’t cause you to lose your hair, or if it does happen it is very rare. When I go into the oncologist’s office I don’t get the same treatment as some other people who are being treated for cancer because I don’t look like I am, so therefore it must not be that bad.

Typically cancer patients would get a form they filled out to rate their symptoms they have with their treatment, such as how tired they are, if they have nausea, or vomiting, and other side effects. I don’t get this form to fill out, even though I have many of the the same side effects as traditional chemotherapy patients, minus the hair loss.  The exclusion me feel as though my cancer doesn’t count and that my side effects are less important than everyone else’s.

The double edge sword is that sometimes people don’t get it. They see me for how I look on the outside and they have a hard time understanding I have cancer. That even though I look good on the outside it doesn’t mean I feel good.  I don’t want people to feel sorry for me, but just once I don’t want my illness to be questioned: “You look so good… You can’t be that sick.”

So yes some days I do wish my hair would fall out.

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.