When the Results Aren’t Good

I’ve been playing phone tag with the OB’s office all day. They usually just leave a message. This time her message was to call back every time. I signed something at this particular office saying they could tell my info to me in a voice mail. They normally do! Telling me “it’s a little abnormal we want to see you again,” or “everything’s great, have any questions call,” whatever. But this time it was just back and forth. Come on guys, can you be more obvious?! If you are willing to leave a message telling me I have abnormal results then I’m going to ASSUME this particular situation is worse!
Well I got the call. Turns out the weird suspicions I’ve been having were right. I’m premenopausal. I’m 28 yrs old! It’s from the adrenal function issues I’ve had from long-term steroid use. They’re putting me on meds, oh but don’t worry, it’s all very normal (sure normal in women in their 30s or 40s to need this or just ME apparently) Blah Blah Blah she explains… All of these months of trying and I haven’t even been ovulating. None of it mattered. It made me cry. It really isn’t that bad. many women go through mild fertility assistance. But it just felt like one more thing my health was trying to take away from me.

I’ve always known I’d be a great mother. No matter how sick I get, I can take care of a kid. But now I might not have that option? For real?! That seems so surreal. But I guess the good thing is it’s still a might. We have a number of options left, starting with the Clomid I start in November!

It can be difficult to establish in my own head how I feel when I get bad news to do with my health anymore. I feel as though part of this comes from every few months learning something else was wrong with me for most of my life. Maybe I learned to just not cope? Perhaps I cope so well it flows over me? I think it is the case really. I go through all of the stages of coping so rapidly that most people don’t notice I had a problem to begin with.

**This does NOT extend to any other area of my life**

Instead this is why when I do encounter something that I can’t just let flow through me and go with it… I don’t know what to do. I shut down. I could be pouring myself into preparing for the eventual baby (which I have been doing for months), but I have such a hard time mustering the hope right now. I spent a lot of spoons/energy on hope these last number of months. I’ll figure out my way to cope with this, until I do, I remind myself I just haven’t found the next great thing yet.

Prolonging My School Hiatus

As it gets closer to August 25th my hopes for starting back to school this semester are dwindling. Even though I’m no longer on Cytoxan/chemotherapy, I still can’t seem to get my health back up to par for classes. I have no reason to go back to school if I don’t have the energy to make it through classes yet another semester. I’m not gonna lie, this is a blow to my self-worth. I know, I know, logically I have the same self-worth as before. But it just feels like one more thing that got stepped on by Lupus and I’ll just have to walk away and start new somewhere else. Currently I am maintaining my denial and am certain I will finish school… eventually. In the mean time I am still trying to hold on to the last wisps of the structure for my life I mistakenly thought would go as planned (way back Freshman year!), I have thought of a few things school-wise to turn my focus on.

I have a number of Incompletes that I need to finish for my major, bot to mention graduation. Instead of pushing myself, I will be focusing on two Incompletes for the entire semester. I don’t need to overload myself. On top of the Incompletes, I’ll be Petitioning the school to get my credits to Roll-over. The thing is… by the time I will be able to finish my degree, with the requirements for credits as well as the requirements for my health, I’ll have been “In school” for more than 10yrs!! Ouch! That was another blow to my esteem… it’s taking me more than ten years to get my Bachelor’s Degree:/ But I have certainly enjoyed the topics I’ve perused while attending classes on and off;) I certainly know what I want to do as a career, if I have the opportunity to work outside the home. With the way my Lupus is going, that isn’t looking to be likely! But I will always look for ways to try to get out there!

Step One Toward Baby World

Well the first steps involve a lot of doctors appointments and tests along with getting my cycle regulated and fertile. Since I was on birth control I have to be off it long enough for my body to start producing eggs again. This CAN take 3 months to a year or so. But I have the time limit of how long before my health deteriorates. If it gets bad enough then trying to have a child wouldn’t be a health-conscious choice at that point.

We see the High-Risk OB this week! We have been consulting with him over the phone and he has been talking with my other specialists. But husband and I get to meet him finally! We will find out what he plans for my Lupus with a pregnancy. I already have the bloodwork done, saw the dentist and eye doctor, my Oncologist’s Okay, my Rheumatologist’s excitement and curiosity. This really is it before the whole waiting for a positive test result.

Turning Into a Reptile

Painful Chemo Rash. Won't stop peeling.

Painful Chemo Rash. Won’t stop peeling.

I think I’m finally metamorphisizing into a reptile. (yes I know I made up that word, but it totally works) I have a horrendously magnificent rash. My entire body itches and burns. My face is well beyond excruciating. If I don’t get some super awesome X-man power from this I am thinking that perhaps this wasn’t worth it! The rash is in my scalp, around my eyes, in my ears, even in the cracks between my toes! This photo shows the rash beginning to fade forming a peeling. Once it peels completely it hardens then peels again!

This rash is what lead to my treatment plan, including the doctor, changing completely.

My Brain’s a Goldfish In a Bowl

The goldfish swims around the bowl in circles. There’s an iHome on the desk the goldfish passes with every sweep. Wooh! iHome! *Goldfish is shocked* Swims around again passing the iHome; Wooh! iHome! *Goldfish is totally shocked by this new item in it’s view.

No matter what, by the time the goldfish gets around the bowl, it’s already forgotten about the iHome. This is my brain on Chemo.

Visiting the In-Laws

Here’s a post that I started more than a month ago, but could only finish now.

12/27/13

So we found out Boxing day that everyone on BF’s mom’s side of the family is getting sick and getting sick fast. This was where we had planned to stay, but with my suppresed immune system that isn’t close to an option. So how do we still make it to Grandma’s 90th if we have nowhere to stay that night?

We had to work fast. His father’s house was an option, but a slim one. For one thing we didn’t know if anyone was sick there because we hadn’t needed to ask. This side of the family has a number of toddlers, which frequently means sniffles and coughs… at the very least. For another thing, they are already housing a number of family members for The Birthday. There was no telling if they had any rooms left that we could stay in! He is the youngest of 6 siblings… there wasn’t likely to be a room that wasn’t being used. Here’s hoping.

**Fingers crossed**

We also started looking up hotels that were half way between his mother’s place and his father & step-mother’s place–keeping in mind, of course, that we have a very slim budget. I mentally bookmarked quite a few hotels as options the night before we headed out the door.

Speaking with his father about the option of staying the night at their place, we got lucky. His father agreed that we needed to make sure the family members showing up weren’t sick first, but there was a bed on hold for us.  My poor Dear had to do all of the driving, not that he doesn’t usually do most of the driving, but it was difficult for me to realize that there was no option for him if he got tired of driving. However, there are some pluses to not having had a license until I was 26 years old: I learned to be a good navigator and copilot.  If you need someone to open up your water bottle, check the map for our next exit, change to a radio channel that isn’t playing Nickelback or unwrap your sandwich, I’m your woman! But put me behind the wheel and my ADHD is so busy concentrating on not getting distracted by anything on the road that a lot of the leisureliness of a road trip gets deleted.

When we got to BF’s parent’s house we put on our protective masks and headed for the door. We stood inside the glass porch to speak with his dad. Sure enough, a number of family members had sniffles and coughs.  His father was very worried about us staying in the germy environment and getting sick. We explained that we had looked up hotels before leaving, finding a number of reasonably priced hotels that we could stay in for a few days. Specifically, we had quite liked the idea of the Microtel in the area. I had stayed in Microtels growing up on family vacations when I was little and we were traveling on the road. They tend to be rather nice hotels the room itself is just smaller. but the things in it aren’t.  This helps make the hotel room cheaper than other hotels typically are. His father agreed to pay for a hotel room for two nights, this way we could stay for the duration of the family visit that we’d intended. This meant we had half of the time to spend with his father’s side and the other half to spend with his mother’s side, just as we had intended. Both BF and I were extremely touched by this show of concern and interest in my/our well-being.

Knowing how difficult it can be to accommodate me to begin with, everyone on both sides of the family really went out of their way to make sure I had the opportunity to feel included. They managed to make me feel like I was actually one of their children being accommodated rather than someone outside the family that they had to “deal with.” If I hadn’t already been sure at this point, that they were going to be amazing in-laws, this vacation certainly cemented the idea in my head.

Infusion #3- This Isn’t Fun Anymore

This isn’t fun anymore. Not that it was actually fun to begin with. But I have hit a point past my physical pain tolerance. Which is pretty hard to do when I’ve set my mind to it.

That sensation that alcohol causes burning into a cut to clean it? I like how that feels. The feeling that I have all over my body right now is burning and itching. It is so beyond my pain level I wish I could pass out so I don’t have to feel the pain anymore.

I had my third Infusion of Cytoxan on Monday. It seems to be an average thing for my functioning to start to come back around Thursday-Friday after the Infusion.

I keep wondering if this is really helping anything. My quality of life only seems to have gone down. What has it gone down for? Muy numbers on my blood work? But were those numbers really affecting my lifestyle on a level that the treatment itself is?

Like Saying Goodbye

It feels like I’m saying goodbye to most of my friends. I don’t mean this in an over-dramatic morbid fashion. Believe me, I decided I’m not dying this time around so any of the rest of it is irrelevant.

More in the sense that I’ve been through this before. The getting sick, getting isolated. They forget. My friends never mean to, they care about me as a person! Quite a lot depending on the individual relationship, but No matter what not being in someone’s daily life you end up drifting out of their minds too… Then when I’m healthy again I have to start all over with making a new group of friends.

Impulsive Choices

Yeah. I’ve been home for a few hours and look what happens, I just did something really stupid.
I’ve been feeding this Momma cat since she was preggers and we assumed she had still-borns when she started showing up again alone and not pregnant. Recently, she’s been showing up about every day the last two weeks. Well this time… She had a kitten with her!
This kitten looks just like the Daddy cat we thought was the daddy who used to always be with the calico and protect her. Well the calico we named Spitfire sits in my door while I get her food. He kitten darted in and I grabbed it. Smooshed to the ground so it was immobilized basically. Started shutting the door, right before I shut it, I glanced at the door. Big mistake, the kitten was able to twist it’s head around & bite hard. Twice puncturing my left middle finger and once puncturing the outside of my right palm.
Yeah I know stupid. For a lot of reasons impulsive, not remotely thought out and the biggest one: I’m on chemo and if this cat has a disease, if I catch it…

After all the shaky panic wore off. We calmed down, because we realized we did everything we could correctly. We made sure the puncture wounds bled to clean out nasty stuff if possible. We washed my finger & hand with antibacterial dish soap and warm water. Then made sure I was clotting, this is super important. Not gonna lie, I think this is where more of our panic came from. BF had to squeeze my finger pretty hard to get it to eventually start clotting. It felt like forever which it wasn’t. Really only a few minutes. For supposedly not being able to clot, we sat weirdly watching my wounds clot in front of our eyes! We put on Neosporin and a ton of band-aids.

This whole time BF is running back and forth between setting up cat traps to collect the kitten in a box, check on me and put pressure on my wounds, and simultaneously put our live-in cats away behind doors without them noticing this kitten.

My parents agree I did everything right after the bite, so now it’s about waiting to see if I get sick. Which is un-nerving. I don’t like waiting and not knowing. Well, I don’t like waiting at all really. So, ADHD or not, just not thinking, whatever it was. I was stupid and impulsive. Now I have to see if I pay.

But then, once BF managed to trap the kitten and put it in the bathroom, we again opened the door to check for the Momma kitty.

Well she came walking right in the door with a bouncing curious grey kitten! Now there are to kittens living with us!

Time For Chemo Infusion #2

Finally.

This week was hell. I barely slept, I have actually been getting panic attacks again as well! When I do sleep, it’s during the daytime, exactly when everyone else wants to see me, so I miss visiting with family and friends who are in town for the holidays.

There is one positive thing about this week! I got to meet my seester’s BF. He is the first person who, upon meeting me, seemed totally comfortable and ok with my health quirks and all that comes with it! He even got all the vaccines, etc. necessary to keep me safe,  JUST to be able to visit our family! So not only is he sweet, polite, and interesting (Not to mention I LOVE how he treats my sister), he also isn’t scared off or weirded out by all the complications and eccentricities that come with dealing with my Lupus. I am sorry I didn’t get to spend more time with him, but I don’t think this one is going anywhere ;) , so I’ll have plenty of chances that I can look forward to!

Aside from this familial break from the stress of my health-life, my week was pretty complicated! I was on the phone with doctors and doing research everyday!

I called daily to ask questions of various specialists that I see. A nurse would get back to me with a brush off or a hint of information. When I managed to get a hint I would ask more questions of the doctor, causing the nurse to say she’ll get back to me and I am left tied to my phone waiting for yet another phone call. When I did manage to get an actual answer to a question I was always very thankful, I imagine the doctors are all very busy, I am one of many patients they see, I can’t be the only person with emergent issues and questions?!

But this still doesn’t make me any less frustrated by the walls being put up and evasions to my inquiries about my own health situation. Questions as simple as; “when are you scheduling my next appointment?” couldn’t seem to be answered by any doctor. Mind you, I didn’t actually get to talk to a doctor. I spoke to nurses who would read off a letter or note the doctor had left for them to relay to me. Honestly these women are angels. They dealt with me getting more and more frustrated with not getting answers.

Asking the same questions over and over doesn’t help, doing it louder helps even less.

But these ladies were patient and sympathized (in general, I am having a problem with one office). The nurses even go so far as to reread the questions they write down and ask for clarifications they think the doctor might want, these things help me have more of a chance I will actually get an answer the next time the nurse calls! They are on my side. These nurses, receptionists as well, want to help.

But somewhere there is a disconnect. Between how busy a doctor’s office is or who I talk to on the phone v. who speaks to the doctor or whether the doctor is distracted or is in a rush. Either way I don’t get all, if any, answers per phone call. Often all I acquire are more questions. My anti-nausea medication prescription was called in incorrectly by three different doctors, yet it is in my file at each of their offices, so to is my explanation and information which has all been written down by each office’s nurse when we have spoken on the phone.

But there is the disconnect between patients and their doctors?

I even had my father making phone calls. For one thing, he wakes up A LOT earlier than I do ;) , but also having grown up with this disease, too often I see a difference between how a doctor reacts to one of my parents versus the “young patient” or even the “young patient and her significant other.” My parents both have rights (as I signed the papers) to access my medical records and speak to my doctors. Like I’ve said before, it’s important to have people around you to guard your back, especially when feeling as exhausted as I have lately.

I’m lucky to have such a large immediate circle of support. I am even more lucky to have growing support from many other outer circles that either have always been important to me, so this support means more than they can imagine, so too are the number of new people I am meeting through this experience. I am learning that all of their support is invaluable not just for the advice, but to know that I am not “alone” in my experiences no matter how unique each one of our situations may be.

By the end of Saturday night (that’s right, we called daily for a week), we finally got answers.

First: I’d like to point out how surprised I was which doctor I actually got the definitive information from. Honestly, I would have expected one of the doctors I had a more long-term relationship with one of the doctors that, having experienced more with, I already trust more.

The oncologist is who called with the information!

You’ll love this! Guess who the oncologist called back with the information about my test results and when my next infusion would be? **Granted we both left messages, cause I seem to be getting nowhere with this office** But she called my father back to tell him my test results and when my next appointment is!

Seriously! It’s not like I’ve been an adult for 10 years and all… nope. This brought me back to the juvenile clinic I used to attend. Whether she meant to or not the oncologist made me feel like I was the child being talked about/around in the doctor’s office. What she may not have realized yet, is that I’ve been making my own medical decisions since I was 10yrs old. My parents helped with research and discussed decisions with me, but they were MY DECISIONS in the end! So far, it is starting to feel like the oncologist thinks she can circumvent me by having my parents decide on my treatment plan for me instead of even discussing it with me. If this continues it will be a big indicator that this doctor REALLY isn’t gonna work for me! I am giving it a try tomorrow. Monday is my 2nd Infusion and I will be seeing the oncologist while I am there for the treatment, despite the fact that her office is in another part of town.

This could be very interesting. Due to the fact that I will have half my immediate family with me. Each one with their own questions, protective curiosity and supportiveness to lend to the situation. After the encounter with this doctor’s nurse on the phone at the beginning of the week (what led to all the week’s difficulties), I need a lot of second opinion perspective on the situation, not to mention distractions and fun, to keep my blood pressure down!

**Watch me get white coat syndrome knowing I have to dwwal with this doc anyway**

Did I mention I’m not looking forward to this?

That’s ok. I’m making it fun. I’ve picked out a festive outfit my socks, panties, and earrings are christmas-y!!! I am wearing my guardian angel pendent knowing that all my extended family Down South is thinking about me. I am also bringing a cute pair of purple fuzzy socks given to me in a care basket by our couple friends J&J! I remember getting chilly last time I had the infusion until I put on fuzzy socks so these will be perfect (Plus they’re so silky!).

My Seester, who works in public radio, is audio taping my experience for family understanding, remembering, and documenting the experience in general–but just for us, not for radio. That my Seester even has an interest in supporting and experiencing this with me, let alone seeing and understanding what I am going through now with my disease more advanced than what she saw when we were children, means more to me than she can imagine!

My mother will be there for the first doctor’s appointment in a very long time. Being a teacher she gets very few days off. When I was little all of my memories are hospital trips with my Momma. To have her there with me again brings back the calm felling I remember from doctors offices when I was little, that feeling that everything will be ok? This might be the only infusion she will be able to provide support for me in person. As she will most likely be teaching for all of my others. I have an ulterior motive for wanting her there on top of Momma comfort and nostalgia: my mother is amazing at reading people. I need to know what she thinks of all these new doctors that she will be meeting Monday morning. It will be interesting to see if she reads the various doctors and nurses the same way I have.

Both my Momma and Seester will be traveling the hour to go to my infusion with me and then back home again and then back out of town for last minute shopping and to pick up my brother at the airport. Now that’s support! That much driving on the 23rd of December won’t be fun. It’s wonderful to feel loved. I might not get to participate in all of our traditions for Christmas, but what Christmas is about is This family, support, love.

My wonderful BF has agreed to stay in town and take care of various maintenance fellows who are scheduled to visit our properties yearly. These would have been hard appointments to reschedule as they are busy companies. My BF staying also allows him to get a bit more rest instead of waking up at the butt-crack of dawn with the rest of us. That way when I come home after chemo he will be prepared to be on point and, if necessary, to take care of me. He has been working nights everyday since break started. I know he is exhausted, giving him those few extra hours of sleep is almost a Christmas present in itself from my parents to him ;) though he would never say it or ask for it, giving him a chance to relax is good for him. My dear BF is only comfortable not being there because he knows my family has done this forever with me, “they got this.”

I am still considering looking for a new oncologist, but until I find one that specializes more specifically in auto-immune diseases, I am going to have to figure out how to put aside my frustrations and assumptions and work with this doctor. But I’ll tell you what, tomorrow I plan to ask how much experience she has working with auto-immune diseases, express to her that the shaking all my specialists assumed was due to my system receiving a dosage of Decadron hasn’t gone away, as well as request that the doctor write a written script in front of me for the correct dosage of anti-nausea pills. This way I can check that it is correct this time…

yeah, I am sooo not sleeping tonight.