Tuesday, July 28, 2009

"Normal" Life.....

I think if you took a poll of cancer patients, they would tell you the one thing they really really want, is to have a "normal life" or get back to what was their normal life. I know that goes through my mind in lots of different ways, as the topic has so many layers to it. Getting back to normal relates to emotional, physical, spiritual and financial "normals". My biggest wish, hope and dream, would be to continue living life the same way after being diagnosed as the way I did before. Is that ever ever possible though? Even if, say you got the physical back on track, don't you always have the mental there saying......you have cancer. You might be in a remission, but the fact is, once you have cancer, you always have cancer, even if it's just a little bitty thought in the back of your mind. The trick then, as I see it, is to strive, through our limitations, to regain as normal of a life as we can after being diagnosed. I would imagine at certain times throughout the journey, you have one thing that will bother you more than others, depending on where your focus may be at that time. Like if it''s a physical thing, well of course, that can't help but take priority at that time, but maybe down the road when the physical aspects get back on track, maybe the financial aspect will rear it's ugly head. Accepting our diagnosis, is #1 in regaining our normal life back, and then the process of adapting to life with cancer comes next. What helps me, I find, is focusing on the bigger picture. Sheesh, I'm always making plans for the future, because I refuse to allow cancer to run my life. Now I will admit, there are times when cancer DOES run my life, through no fault of my own. Like for example, when you have doctor visits every blessed day of the week! Hard to un-focus on cancer during times like that, as the constant needles and blood and vitals etc., slap you in the face with the reality of the situation. But those days, fortunately aren't the norm. How does that saying go? I may have cancer, but it doesn't have me. It's just that we need to remind ourselves every morning when we wake up that HEY..I survived another day, so what am I gonna do with it? And I don't necessarily mean do something physical with the day, it can be any of the other aspects I talked about. We just have to come to the point of acceptance that says, yep, this is shitty....I have cancer.... but it is not the center of my universe and I will push along as best as I am able. Now I don't mean to sound trite...far from it.......and this is not the easiest thing to do either, especially when physically feeling crappy, but keeping it uppermost in my mind helps me. I still have so many things I still want and need to do, that I have to focus on them and give cancer a back seat in my life as best as I can. I have lots of trips I still need to take, some I am currently planning as we speak, and I want to be around for my girls. At least till I'm an old lady :) I just don't want anyone giving in or giving up, which is WAY easier to do than getting battle armor on and fighting another day, but that's the card we drew, so don't fold your hand....play the cards.

Saturday, July 25, 2009

Still Hangin' in There.......

I went to the doctor's office on Thursday (2 days ago) to receive my 2nd injection of the IV chemo drug Velcade. I was so terrified because of what had happened to me after the first injection, and so so so did not want to end up hospitalized this weekend too. Dr. Nair and I had lots to talk about at this visit, but we came to an agreement on my current plan of care. We decided that rather than starting at the normal dose of 103 mg of Velcade, that we would lower the dose I received Thurs to 100 mg. and instead of having the injections twice a week which is the usual protocol, that I would only receive it once a week for now. In addition to lowering the dose, we also developed some pro-active things to do to try to prevent another hospitalization. They are to go back to the office on Fridays after my IV on Thursday, to receive an IV infusion of hydration (as much as I drink water......and it's a ton....) I was still dehydrated when I was admitted to the hospital last week. In addition to the day after hydration, I was also taught to give myself neupogen injections, which I will give myself every day while undergoing this new chemo velcade. Neupogen is the drug I received right before my transplant last year. It is a drug that increases the production of while blood cells, and therefor gives you protection against any bacterial, viral and other infections that are floating around out there. It will give me a protection that the velcade just demolished last week. The problem last week is that the velcade just crashed my WBC, which fight infection, into such dangerous zones, and therefore also started running a temp because of this. To get the neupogen approved by the insurance company will take jumping through a few hoops, since it's an injectable as well as VERY expensive. I don't know how much this is per month as I haven't received any paperwork on it yet, but I know that the oral chemo revlamid I take costs $8,000 a month and velcade is much stronger and more powerful, so I can (no...actually I can't!) imagine what that cost will be. It will probably take about 4 days or so to get this approved, so in the meantime, my whole next week, every single day, will be taken up with doctors appts. On Monday I will go for a CBC (complete blood count) to see where my low platelets are and to determine if I will be going in for a platelet transfusion as well as getting a neupogen shot. Some slightly good news though, is that when I did come home from the hospital last week, my platelets were at 40 (normal 140) but by yesterday they had come up to 54 with no intervention), and then Tues and Wed will be just getting the neupogen shots and Thurs will be IV chemo day, and Friday will hydration and neupogen shots (although I hope to have my own by then and can give them to myself at home) Oh yeah...another change is that instead of the usual prtotcol of 103 mg of velcade twice a week for 2 weeks and then 10 days off, I will be having it once a week all the time. The bottom line is that I am on the right meds to get the MM under control, but the larger question becomes, where is the right balance? I will be on 15 mg of revlamid, 100 mg of Velcade, 40 mg once a week of dexamethasone and coumadin (the blood thinner as chemo causes blood clots). Any and all of these drugs can mess with my blood counts, so he said that our job right now is to play with the dosages until they are right and I can work my way up to the usual dosage and protocols for the velcade which has a proven record of really kciking some MM butt. This could take several months or up until around the holidays, no one knows for sure, since this is NOT an exact science and each person handles things differently. (I'm opting for the several months tops!) It's actually kind of new and weird for me too, as I'm not a "side effects" person.....really ever. This last time was the very first time that I've had more than the usual pesky side effects (low energy etc) from any type of drug I've been given, even through all the stuff I had to take for the bone marrow transplant. Kinda threw me off my game when I had to go the hospital last week, as it was so unexpected too. Well that's where we are right now in bizarro cancer drug world and I just visualize and see myself going through a few rough patches right now, with the promise of getting it right and having LOTS & LOTS of complete remission ahead of me after all this is said and done. Join me in seeing this, won't you? :)

Tuesday, July 21, 2009

Back in my Own Bed.....

Was released from the hospital on Sunday afternoon, after arriving there about 11:00 AM on Thursday. The Readers Digest condensed version of what happened: Received my 1st velcade infusion on Friday the 10th. Felt ok and then as I had written, started running a fever and feeling weaker and weaker as each day went by, to the point I was holding onto walls and using a cane when I walked. EVERYTHING was a struggle. I was supposed to receive my 2nd infusion of velcade the following tues, but called the office and told them how I felt and that I had been running a fever and they said no to the infusion and made me an appt to see the doctor the next day (wed). Went through the usual routine of blood etc and it turns out my WBC (which have never been an issue until today) were 1.2 and normal is 4.0. That means with the temp it's called a neutrapenic fever which is a life threatening condition. The hospital didn't have a bed for me that day (required a private room b/c of all the precautions needed with this issue) , so doctor filled me up with 3 hours of IV drugs to get me through the nite and admitted me for the next day. I won't go into all of the gory details of the hospital stay, let's just say it's just horrid being in the hospital. I don't know how you are supposed to heal in such an environment. You can't sleep, the food is horrible, the tubes and Iv's all over, people in and out all day and nite.....and that's just part of it. Each and every moment I was there, all I wanted was to come back home and be in my own bed, with my coffee, take meds on my timetable etc etc. Needless to say, I was thrilled when they gave me the ok to go home on sunday afternoon. I was to follow up with blood at the office on Monday so that's what I did, and WBC back in normal range, RBC a bit low, but nothing requiring intervention BUT my platelet count is super low right now. Normal is 140 and my count is 40! He said we'll wait till I see him on my Thursday appt and if they are still at crisis level, I'll need to have a platelet transfusion. This shit is really getting old. After being in remission and feeling good for 10 months, this relapse has just not given me a break. It has truly been one thing right after or in conjunction with another. Between all the UTI's, transfusions and now a hospital stay under my belt, well all this has happened in the last 6 months so it is truly wearing me out. I need to string together a bunch of good days for a break and have time to recoup. Mentally and physically, it's just a struggle to day by day get through the last 6 months with all this stuff going on. What a cunning and baffling and unrelenting disease this is. We must never take for granted even one second of feeling well.....ever. I am feeling a bit better today, being my 2nd day home, but of course, I did over do it yesterday (monday, after getting home from hosp on sunday) b/c I had the doc appt and then decided to just grab a few things from the grocery store while I was out, which then in turn, I was like, hell, I'm here and I don't know how I'll be feeling so I'd better grocery shop, so that's what I did. By the time I got home I was so whipped, I could barely bring the groceries in and put them away, but now it's done and me and the dogs have food :) Today I am just chillin and plan on doing the same thing tomorrow. Have to be at doctors at 11:00 am on Thursday, so me and the doc have alot of talking to do to figure out where we go from here, since velcade didn't like me too much. Maybe we'll play with the dosage, but it scares the hell out of me to try it again, after what I just went through. No pain no gain, right? Who thought up that crappy way, anyway?

Thursday, July 16, 2009


I really don't have the energy to write down all that has transpired in the last few days, so maybe I'll be feeling better in the next few days and let ya'll know what's going on. Bottom line.......I have been getting worse over the last week (since the velcade last fri) and my WBC have become life threateningly low. When you body cannot produce it's own protection, the ONLY thing to do is hospitalize me and get me on IV antibiotics. I saw an "infection specialist" today, so only him and Nair will be my doctors. I am breaking down in tears right now....I HATE hospitals. The noises, the interruptions, the IV machine noise, uncomfortable beds, bad food....just everything about them and I hate being here so much. I had no choice though.....I could literally die if I had let this go untreated. It's called a "neutrapenic fever". Pray for me.

Tuesday, July 14, 2009

Where's the Fever coming From?.

I made my last post on saturday, having had my 1st velcade infusion on friday, as I just wasn't feeling well enough mentally and physically to write anything on friday right after my doctors visit, and after having such a shitty day. What I neglected (or really just chemo brain forgot to tell you)...when I go through the "regular routine" of weight, blood draw, blood pressure and temp, I was surprised to see I was running a low grade temp of 99.2 that day. Not a REAL biggie, but certainly something to watch for sure, when you have no immune system to speak of. Of course my first thought was....UT- OH......here's the possible start of another UTI coming my way. Now generally speaking, for a normal person 99.2 is a slight indication that something may coming my way, but on top of that, my usual temp runs a bit lower than the normal persons...I generally run about 97.8, so that , for me is even more of an indiciation that something may be going on with me. Several visits ago, Dr. Nair had written me an antibiotic for 2 weeks with a 2 week refill, just in case I felt something coming on and before I could get to him, and of course things like this always crop up on a friday or the weekend, when you can't get to the doctors office before monday! So when I came home from my fridays infusion, I started on my levaquin (antibiotic), just in case I was starting a UTI and also dow 3 ibuprofen as a precaution. Started a "fever log" as I can't remember anything these days (YES>>chemo brain back in full force). On Saturday, took my temp and it was normal throughout the day. Sunday, I started to feel weird and feverish, so took my temp at 1:15 pm and it was 101.2, so again, I take the antibiotic and 3 ibuprofen. At 4:15 (so only 3 hours later)it came down to just 100.6, so not much help in going down :( Took another 2 ibuprofen, and finally went to sleep knowing that was the last time I was going to take it that night. Needless to say, felt pretty shitty on Sunday. On Monday, didn''t feel feverish or weird, so took my first temp of the day at 3:25 pm and it was 98.6.....(although con't to take the antibiotic) YAY.....normal. BUT BUT BUT.... at 4:45, just a bit over an hour later, I started feeling really bad and took my temp and it was 101.4! Again, took 3 ibuprofen and my antibiotic. Took my temp again 45 minutes later (at 6:30 pm) and the ibuprofen made it go back down to 101.0, so just .4 lousy degrees in 3 hours. Needless to say,I'm still feeling pretty dang wiped out and weak by this time. At 6:30 pm, after 2 more ibuprofen, I got it down to 99.0 around 8:00 pm and tried to go to bed early. Now today, I was supposed to go in for 2nd Velcade infusion, but I kwow chemo kicks your butt and I wasn't sure whether they would even want me to have it today, so I called the office around 9:00 am (my appt wasn't until 11:15 and my temp was 98.9) but they said NO...Don't come in for the velcade, until we figure out what is causing the fever, they set me up for an appt for tomorrow (wed). Now here is here the predicament lies. If I hadn't had a low grade fever on fri (BEFORE the infusion), it would stand to reason the chemo is the culprit as it is one of the side effects. But because I did have a low grade temp on fri, is it the beginning of an asymptomatic UTI (which I continue to take the antibiotics everyday..it's only 1 pill a day of 500 mg of levaquin).....so it it just the UTI starting? Is is a combination of the velcade and and a UTI? Or is it something altogether different and new? I know that kidney issues can cause fever as well as several other MM issues? I am so weak right now, from something...had to use a cane for stability again today...can hardly move around in bed and again (and I know you are getting tired of hearing this..the FATIGUE is just so overwhelming. Like I couldn't drive myself to the doctors today..just no way...so mom , again my angel, will have to drive me tomorrow, if I still feel the way I do right now. I guess I just want answers. Is it the chicken or the egg? I just know, this is once again, one of my "rough spots" that I will have to get over to fight this fight. It just gets real old sometimes, ya know? I'll keep you posted.

Saturday, July 11, 2009


I went to see Dr. Nair yesterday for my regular appt., to check all vitals, as well as having the usual CBC to check on white and red blood cells. I weighed 91 lbs. by the way.....something I am so concerned about :( I didn't know if the results of the bone marrow biopsy I had on Tues. would be in by then or not, so I went in wondering if the results were back yet. Mom took me to this appt., as I also wasn't sure if I would be receiving my infusion that day or not, and in case I did have the new chemo infusion and I had any side effects, we thought it best if mom took me to my appt. and Ashley would come and pick me up when I was done, as we also didn't how long it would take either. So I went to this appt not knowing several things. My RBC were all either just at normal or a little low, but nothing that required any intervention. So all of those are stable for now. That last transfusion has lasted me 3 weeks now, so that's a high five, as again, it has made me not as horribly fatigued as I had been.
Just a word about Dr. Nair before I go on with the rest of my day......
As I've said before, I trust him implicitly. We are a team. I really think that goes back to my very first appt. with him when he so thoroughly explained what MM was and what the possible treatment options were for this disease. (He made drawings and all). :) After he was done I had said to him "We are in this together, right?" and "We're gonna do our best to beat his thing as a team, right?" and he answered yes to both questions, and then I gave him a "fist bump"! Oh, yes I did! LOL.....he then stood up and pulled me to my feet and gave me a big hug and said "we will fight this as a team and fight together". That was the very beginning of our relationship, and we've only grown closer and more trusting over these 2-1/2 years. He has also told me that he knows and respects that I am very informed about this disease, so when he says something, he knows I understand what he is talking about and if I don't understand or have any questions, he takes however long it takes to explain things to me. He has a way that includes me in all decisions. For instance, when I went in for my last blood transfusion, the way he said it was "how do you feel about having a blood transfusion for your low RBC count?" Now if I had said, let's just try the shots for a few days and then I'll make my decision, he would have respected my decision and done it my way. At the time, as well documented here, I was feeling so horrid I jumped at the chance for a transfusion, so of course said yes, but my point is he would have done it my way had I chosen differently. Another thing about my doctor.....he does not give false hope NOR predict dire outcomes. If you are ever diagnosed with a serious disease and a doctor either tells you no problem OR gives you an expiration date.....find the door AND another doctor as fast you can. The "no problem" doctor cannot predict side effects, medical complications, etc. and the "expiration doctor" does not have a crystal ball that can predict the future and everyone is different, so neither doctor has any business telling you one way or the other, and has no business being your doctor. That's why I trust Dr. Nair so much. He does neither. What he has to say to me at any given appt. is about how I am doing right then. Another reason I trust him so much>>>> he has said to me on several occasions "Jan, out of all of my patients, you are the one that is always on my mind. I think about what is going on with you and what the next several outcomes might be, and where we wil go based on them. You are always uppermost in my mind". That assures me I am not on someone's back burner....or that my doctor is just waiting for the next bomb to drop before thinking about options, etc etc. It makes me comfortable. He totally has my back and and we have a mutual trust and respect for each other, that I am so grateful and thankful is there. He always greets me by either holding my hands in both of his or a big hug and ends the appt in the same way. I feel close to him. I cannot imagine going through all of this without someone like him guiding me through this journey.
Now back to my day.....he told me that the bone marrow biopsy results were in and that it showed 50% cancer cells were in my bone marrow. At initial diagnosis back in 1/07 the results were 65% cancer cells, so that basically means I am almost back to where I started from and that's even after going through the hellacious bone marrow transplant. I started to cry. This news actually stunned me and I don't really know why. It shouldn't have, as I've had several indications that I have a very aggressive form of MM starting with relapsing from the transplant after only 10 months and the latest low red blood cell counts over and over. That's what MM does. Of course I got an extra hug (LOL) when I started to cry, (and a box of tissues) which I really hadn't planned on crying, it just sorta popped out of me! It was totally unexpected on my part, but hey, it was a real and genuine reaction. We then spoke some time about starting the velcade right then and there and I was prepared as I did bring my IV transfusion bag with all my "stuff" in there to occupy the time. He assured me that this will definitely bring down my MM numbers (that's why he wanted the biopsy results done first). He said I would receive Velcade for 4 months and then we would see where I was at that point. That would be on a schedule of Fridays and Tues. for 2 weeks and then 10 days off.....to start that schedule all over again, for a total of 4 months. I asked him if his goal for this round of treatment was a partial remission (in my mind having had an unsuccessful BMT and having to back down on my revlamid b/c of side effects) and he said NO....my goal for you will always be complete remission. He also told me in years back, all an MM patient could hope for was at the most 3-4 years tops, but now with the inventions of so many new chemos and drug combinations, that I can seriously look at a minimum of 10 years and that who knows what is coming down the pike as far as new treatments and drugs. Like I told you before, he doesnt just throw out numbers easily (or at all), so for him to say something like this really does mean something. After discussing a few more things, I went back to the infusion room and started the next leg of this journey I'm on. Nobody promised it would be easy, huh? I'm just bummed out right now, but I'll get over it and move on. I still find myself feeling a little sorry for myself and the tears well up, but it comes in waves and then passes. Luckily for me, my personality doesn't really make me stay in a sad place for very long and thankfully I'm not a "dweller", so that's a good thing too!! So for now, that's were I am>>>> all positive thoughts and prayers are more than welcome. :) A really big thank you for traveling with me and being by my side while I go through this. It helps even more than you know.

Monday, July 6, 2009

Bone Marrow Biopsy Tommorrow......

Spent several hours at the outpatient surgery part of the hospital, filling out all of the paperwork, getting blood drawn, etc., making sure all of the "proverbial ducks are in a row" for my bone marrow biopsy tomorrow. Have to be there at 9:00 am for the 11:00 am procedure. I'm not sure, and it wasn't documented on the paperwork anywhere, what kind of anesthesia I will be receiving tomorrow. Last time I had a biopsy at the hospital, it was a different kind of biopsy..... it was right after my cancer diagnosis, and the biopsy was to determine what kind of cancer I had. They had to take different pieces of my tumor from different areas to send to the lab for a definitive diagnosis. Tomorrow it will be going into the hip bone and extracting strands of bone marrow and be used to determine how many cancer cells are "hanging" out and where I basically stand with this disease right now. At initial diagnosis, my bone marrow contained 65% cancer cells, so I am curious to know how aggressive this disease is being right now, (especially after having had a transplant!) and it will also help the doctor assess how aggressive he needs to be in treating the MM. Fingers crossed they haven't gone up an outrageous amount. Which brings me back to...... I'm not sure if I will be out like a light tomorrow or he'll do what he did for the 1st one I just described. During that procedure, I was awake the entire time (I remember them asking me....how do you feel?....did you feel that?..it won't be too much longer....stuff like that) and was told they were giving me (through the IV line).....a fast acting but short duration pain medication that they could administer frequently as needed and another drug...( I forget now.....WOW, that drug has lasted a LONG time..LOL) maybe it was versed?), so that I could still be awake to answer their questions, yet not remember the pain ....THAT"S MY POINT DOING IT THIS WAY :) So we'll see, either way, as long as the biopsy goes smoothly is done as painlessly as possible, it's all good. I'll let you know how it goes, but if it's the same as the prior biopsies which I am anticipating, I won't even know something was done, except for a teensy bit of tenderness in the hip area. No big deal :)

Friday, July 3, 2009

What Low Blood Cells?.......

Had my appt for my bloodwork yesterday and WOW......all was really really good! It's such a great feeling when after a doctors appt you walk away with good news..... for a change! My WBC's were normal, but those pesky RBCs that have been nothing but mean to me and a HUGE pain in my ass these last few months were wonderful. So that means that not only did the blood transfusion work, it seems to have lasted and not petered out, as it was given to me a week ago today and my numbers yesterday indicate almost double what some of them were last week and the rest in normal range. Woo Hoo. The main thing about all of this though, is I FEEL good. I feel normal, with only a slight fatigue at the end of the day, but hey, that's normal. I am driving, running errands, doing household stuff and even in the midst of choosing a color to paint my bedroom! I had picked up the swatches of colors over a month ago, but then BOOM (enter 4th of July firecracker noises here) the big blood crash, so needless to say, the painting of the bedroom was placed way way back on the last imaginary burner. I also WANT to get back to my studio making beads and jewelry. I've missed that so much :( But now, well, let's just say, I'll be in the studio for LOTS of time now, because while I did have my "crash" time, I had lots of really cool ideas floating around in my head for bead ideas, so I can't wait to get out there and start "playing with fire" again. If you have never seen photos of my bead studio, you can check out my Facebook Page.....Jan Farmer....and on the left bottom of the page is a link to my photo album of my bead studio. Gonna run for some groceries shortly..... ahhhhhhh......the little things you look forward to when feeling better....LOL) and then coming home and "play" with glass for a few hours afterwards. Ya'll have a great 4th of July tomorrow. Ashley and I will either be going over to Mom's for a BBQ or go out to eat, we haven't decided yet. I have 2 upcoming topics that have been swimming around in my mind lately, that I will be writing about shortly.....one is the Bucket List and another will be photos of baby kittens that my Mom and Van fostered.... a feral cat (actually it fostered them)...she had babies in their driveway and they are getting old enough to go to a no-kill shelter for adoption soon and I want to take photos of them while they still have them. They are truly too cute for words.

Wednesday, July 1, 2009

Just a Quickie..... & Pics :)

Still feeling pretty dang good today. Have a doctors appt for blood draw tomorrow, so we'll see where the ole RBC's are hangin after the transfusion. I'll have a pretty busy day tomorrow as my appt is at 1:00 pm.....and it's the appt where I get all my monthly scrips written, so afterwards I'll have to stop at the pharmacy and have them filled and then get home as the TV cable guy will be here between 5-7, as the DVR crapped out about 3 days ago, so I've had to watch TV in my bedroom for the last few days. I've added a couple of new photos today that I took on 6-18-09, so that was 13 days ago. Wanted to give you an update on the hair and then I happened to be wearing this little T-shirt type top I bought at a bar when we were on our cruise in November. It was called the "Blue Bitch Bar" and we ate there for lunch (also a photo of that farther down near the cruise photos). I hadn't worn the shirt till the day I took these photos. Thought it was such a hoot, I wanted to share :)