To Hell and Back... but, I'm Still Alive

It's been a rough couple of months, I was to hell and back a few times... I'm getting back to normal... well, as normal as you can with cancer!  Let's say, I'm stabilizing... at least I'm crossing my fingers that I'm stabilizing this time.  I said that a couple of weeks ago to someone, three days later I was in the hospital.

I'll be doing update posts as I can to get everybody up to speed... hopefully everyone hasn't given up on me and is still checking in on my blog from time to time.  Oh well...

I hope everyone out there is doing okay!

More Photos Of My Cancerous Bump

These photos were taken on Dec 14, 2012... I had a CT scan earlier that day and when I took off my bra I must of scraped it open.  Mom decided to mark the border of it to show the growth... wish we thought of that as soon as we discovered it.

 

 

 

 

 

 

 

 

 

 

 

 

 

This photo was taken on Dec 15, 2012

 

 

 

 

Here's a couple of photos of the CT fluid injection site.

 

 

 

 

 

 

Lovely, huh?

 

 

I see my oncologist on Monday for the PET and CT scan results.  I also received a voicemail to set up an appointment for chemo... guess I'm starting a new chemo.  I think she said Ontak... just did a search, guess I heard correctly, though I'm not liking what I'm reading.

 

http://us.eisai.com/section.asp?ID=257

 

Cancer Update: 12/12/12

I know it's been awhile... so here we go!

Back in October, actually October 2nd, I went for my last chemo session for this round on Brentuximab... after this session we would do some scans and determine if I appeared in remission or if we should continue with the chemo.  The neuropathy in my fingers and toes were pretty bad; so my doctor talked me into not having the chemo that day, we would do a PET scan to determine if the cancer was still active and then decide if I could stop the chemo altogether or if we needed to just delay it, giving more time between sessions and giving my nerves a chance to recuperate.

She said she never had to talk a patient OUT of doing chemo before… I was concerned about the cancer coming back again.  When I finished the round of CHOP last year and was “declared” as “appears to be in remission”, it was two weeks and the cancer on my arm had reappeared, then a few weeks after that it appeared in the lymph node under my right arm again… also spreading into my chest area and into my bone marrow in the pelvic area.  So I had reason to be wary.

We were preparing for the PET scan when we were notified that Medicaid denied the request!  I received a letter from the panel of their decision by certified mail… we had to sign for it!  Unbelievable!!  This NEVER happened before… I had been on Medicaid for six months and had just been renewed on Sept 11^th.  Evidently part of the change was the beginning implementations of Obamacare, such as the setting up of the “panels”.   So I guess Republicans were not wrong…  

 [A little background… last year my cancer had progressed and took a pretty bad turn in November.  In December I applied for Social Security Disability and Medicaid.  Up until this point I had been getting help through the hospital’s financial aid services, I lost my insurance when I was laid off in July 2011.  I was approved for SSD in January and approved for Medicaid in February.  My Medicaid deductible is $5400.00 every six months… so it’s kind of like having insurance.  Very expensive insurance… especially for someone on Disability.]

 So, my PET scan had been denied.  They informed us that we could do a CT scan.  We didn’t need a CT scan.  We needed a PET scan because the PET scan lights up the active cancer.  We were looking to see if the CANCER WAS ACTIVE so we could determine if I still needed the chemo or if I could take a break!  Since we didn’t have much choice, we did the CT.  It showed two irregularities, or nodules, or something… one in each side of my lung.  Slightly concerning… but not immensely. [When I was first diagnosed in 2004, the scans showed some nodules, one in each lung.  The doctors there assumed it was lung cancer and immediately put me at stage 4 and started CHOP chemo.  I had one dose and then moved here to NC; the doctor here stopped it immediately and said there hadn’t been enough testing.  It was determined to possibly be scar tissue from when I had a severe case of pneumonia in 1991.]  I thought maybe this is what was showing up this time also, my doctor doesn’t agree.  She says the scan I had earlier this year did not show this.  So now we’re up in the air… is it infection from a cold, was it the scar tissue and just a fluke that it didn’t show up in the last scan, or is it cancer that has traveled to my lungs??  Which would be WAY BAD!

Then I received another letter from the panel (certified mail, of course)… they also denied the physical therapy my doctor prescribed for the neuropathy.  WOW!!  I began to wonder if I was ever going to get approval from Medicaid for anything ever again.  I really felt as if I was getting left to die.  This was becoming unreal.

When I saw the P.A. on Nov 5^th, there was discussion of symptoms coming back and I was informed that we were going to wait until January and do another CT, since Medicaid would not authorize the PET.  I was highly upset!  I had been off chemo since September… my symptoms were coming back in full force, the difficulty in breathing, shortness of breath, the wheezing, the pains, etc.  I told her I thought it was very much like playing with fire!  I have symptoms coming back, a possibility of it being in my lungs… and we’re gonna wait another couple of months??  Are you serious?  I’d hate to wait until January, do the scan, and then find out, SHIT, if only we scanned sooner, now it’s too late!  If only we had caught this sooner!  I mean REALLY?!  I DID NOT GET THAT AT ALL!  The P.A. told me she understood and went out to talk to the doctor.  It was decided that we would do the PET scan, but through the hospital financial aid services.  I thought, “Thank God!”  I believe it was the very next day that I received a voice message telling me that the doctor had changed her mind and that she didn’t want to see me until January.  I was shocked!!  I was dumbfounded!!  I was speechless!  After the initial shock wore off I became upset, angry, severely pissed off… HOW DARE THEY JEOPARDIZE MY LIFE!!  I wanted to cry, but I was so angry… I wanted to go down there and demand the scan; I was going to tell her that if we wait and the cancer spreads while they do nothing, then I was going to sue her freakin’ ass!!!  I was so upset and so angry that I ended up shutting down.  I couldn’t call, I was afraid of what would come out of my mouth.  I didn’t want to go running down there in fear of creating a major disturbance and having security called.  I contemplated getting a second opinion, and I thought about finding a new doctor.  But I adore my P.A.

I shut down for about two weeks… then I had something appear on my back.  This was taken on November 29, 2012.  *In some of the photos I marked some things that looked suspicious to me, they appear to be growing as well as it all progresses. They're just little bitty baby ones right now.

 

 

 

 

 

Okay, let’s back up a bit.  Right before I saw the P.A. back on Nov 5^th, I had what appeared to be some kind of bite, like a huge mosquito or bug bite on my right arm.  Didn’t think much of it so didn’t mention it.  But now it had become perfectly circular, it was very pink and had a red line around the circumference that was a little indented.  In a way it looked like a burn, kind of like from a car lighter.  At one point, after a shower, the top layer of skin came off and it REALLY looked like a burn.  Very strange.  Wasn’t sure if it was cancer. 

 

Didn't photograph the first stage of the arm thing, the big bug bite stage, then it started to look like this.

 

 

 

Then, a few days later, after the shower it looked like this.

 

 

 

 

 

Then this thing popped out on my back.  This was the day before Thanksgiving.  I had an appointment with the P.A. on Dec 4^th for Labs & Exam, figured I’d call and bump it up, then figured at this late time there probably wouldn’t be any openings.  So I called my family doctor.  She thought the one on my back looked like an infection, so she put me on antibiotics to clear it up.  I told her that mom removed a tick last year from approximately the same place, so she had blood work done also for Lyme disease and Rocky Mountain Spotted Fever, just in case.  Well, the antibiotics didn’t affect the one on my back at all, but the one on my arm started clearing up.  At this point I don’t know if it was the antibiotics, or it just running it’s course.  On Nov 29^th I had mom take some photos of the one on my back… SOON AS I SAW IT I KNEW… I knew it was cancer!

 

 

Here it is on December 1, 2012

 

 

 

 

 

Here it is on December 10, 2012

 

 

 

 

 

  

 I saw the doctor on Dec 4^th, told her I was fairly certain it was cancer.  She looked at it and agreed.  She said she also feels swollen nodes on the left side of my chest/arm area.  Said we needed another CT and a PET scan.  Just found out Monday that Medicaid approved the scans, thank God!  My PET scan is on Thursday and the CT is Friday.  I see the doctor on Monday, Dec 17^th for the results and game plan. Still feeling uncertain about my doctor… feel a little betrayed and definitely feel that trust has been broken.  Will definitely need radiation, which I think we need to be moving a little faster on.  It has already grown substantially and I’ve found several new ones breaking out, they’re still tiny, but coming along just as fast.  We keep taking pictures every few nights to track the progress.  It is EXTREMELY fascinating to see it like this… my camera phone is AWESOME!!  Some really great high-def photos.  The little ones we couldn’t see with our eyes, we wouldn’t have known if we hadn’t taken the photos.  Then when I used the magnifier on them... WHOA!!!

 

You have to admit... it is a little fascinating, isn't it!?!

So that’s what’s been happening and where I’m at!  In the middle of all this right before and during Christmas… AGAIN!  Well, look at it this way… if the Mayan’s are correct and the world ends on 12/21… at least I won’t die from cancer and I won’t have to do this crap anymore!  Oh, that reminds me, I have a dental cleaning on 12/21… got to have clean teeth for the end of the world!  Flash those pearly whites!  :D

Chemo Update

They canceled my chemo last Tuesday... neuropathy is more severe than they are comfortable with. They are going to set up a scan for next week, to see if any active cancer cells are still showing, then we'll go from there. The delay, hopefully, will give my nerves a chance to heal a little.

Cancer Update: BMT, Chemo, Neuropathy

Photo by Anne STA ~ 
Still no news on the bone marrow transplant, they are looking for a match.

On September 11th I had my 15th session of chemo.  Was supposed to have one more on October 2nd, but they are considering extending it a little longer.  With my neuropathy getting worse little by little, they are also considering either putting more weeks between sessions or maybe stopping for a bit to see if it subsides, then continuing.

I haven't talked with the doctor yet, but after this last session, the neuropathy took a big jump.  It is really bad in my fingers, and not just the fingertip area, it has gone down to the second joint.  I have a lot of trouble feeling things, the nerves are super sensitive, and I get bad pains zapping through.  I don't use the computer much 'cause typing makes my finger pads start to hurt like they are smashed and bloody.  My toes sometimes feel like they are hanging off like a loose tooth that needs pulled.  The feeling is so real and a bit disconcerting... I have to actually look at them and check to make sure they're not.  I'm concerned that most, if not all, of this neuropathy may be permanent.

I have been dealing with the discomfort and pain during the day by trying to keep my mind busy and concentrating on other things.  I try to do what I'm able to and I watch alot of movies, news, tv shows.  It's the night time that gets you... as you try to settle down to sleep and there isn't anything to busy your mind.  Then you really feel the pains.  Sometimes you want to cry, sometimes you feel like screaming because of the constant, neverending, relentless buzzing, zapping, shooting pains.  My toes are so sensitive the sheets feel like razors or glass shards being dragged across them.  My doctor gave me neurontin (gabapentin), but I had bad cramping with it.  She then gave me percocet (endocet 5-325), which has been working for me at night.  I take one tablet about two hours before bed.  Sometimes I want to take two pills, but I know this drug can be addictive and can cause liver damage... so I don't.  She has recently gotten me authorized for Lyrica, hoping that I wouldn't have the cramping with this... but I'm too scared to take it... the possible side effects and warnings are awful.  Suicidal thoughts, becoming aggressive, swelling of the mouth, tongue, lips, difficulty breathing.  **Yeah, not winning me over.**

Maybe I'll buck up and try it tomorrow.

I was also told to take magnesium, so I added that, plus some other vitamins and whatnot.  Magnesium, Super B-Complex, Zinc, Align Probiotics, E & C, and a vitamin blend for people who take acid reducer pills such as Prevacid, Prilosec, etc.  One of them or a combination of one or two is causing me severe cramping and diarrhea.  I've had to stop taking them and tomorrow night I'm going to start adding them one at a time to weed out the culprit(s).

Neuropathy Woes

The neuropathy in my fingers is getting worse... tonight I picked up a stack of (two) bowls from the cupboard, thought I had a good hold of them, but evidently I couldn't feel that I didn't quite have them or couldn't feel them slipping... not really sure since it happened so fast, and, of course, didn't feel it.  It was almost immediate... the bottom one was laying shattered on the counter.  :0  It was a little shocking 'cause it happened so fast!  *lol*   I told mom that maybe we better get some plastic dishes for me.   ;)

Also, my hands, arms and legs shake alot... it's like the beginning stages of Parkinson's or something!  :)  Oh the wonders of chemo!

Bone Marrow Transplant (BMT) Update

I received a call from my BMT nurse and coordinator, she wanted to make sure I wanted to start down this path... because she found a couple of possible donors and before she requested the samples she wanted to make sure I was on board, because requesting samples for further testing costs money.  It will be 6-8 weeks before I know if we have a match or not.  Once we find a match, then I have to have my scans, meet with the doctor again, have to go through the chemo to wipe out my bone marrow cells and then have the transplant.  So I guess if they do find me a match in this go-around, we'll be looking at an October transplant.  A rough estimate anyway.

I have been asked if blood type matters... the answer if Yes, and No... for the best (or perfect) case scenario, yes they would like to find a bone marrow donor with the right HLA markers that also shares my same blood type.  BUT, they do use donors with different blood types.  What really matters are the HLA (Human Leukocyte Antigen) Markers.


Matching a patient

Q: How is a bone marrow match determined?
A: Doctors look for a donor who matches their patient's tissue type, specifically their human leukocyte antigen (HLA) tissue type. HLAs are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The closer the match between the patient's HLA markers and yours, the better for the patient.

Excerpt from www.marrow.org
http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#match


What is really crazy is... if we do use a donor with a different blood type as me... MY blood type will CHANGE to the DONOR'S blood type!  How wild is that!


Q: How likely is it that I will match a patient and go on to donate?
A: On average, one in every 540 members of Be The Match Registry in the United States will go on to donate bone marrow or peripheral blood stem cells (PBSC) to a patient. Because of the vast variation in tissue types, we can't predict an individual registry member's chance of donating to a patient. If you have a relatively common tissue type, you might be one of many who could match a searching patient. If you have an uncommon tissue type, you may never match a patient, or you might be the only one out of more than 9.5 million registry members who can save a person's life. Every person who joins the registry gives patients more hope of finding the match they need. The most important thing you can do as a registry member is to stay informed and committed so that if you're selected as the best donor, you're ready to move forward.

Excerpt from www.marrow.org
http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#match


So finding a match is like finding a needle in a haystack.


Q: What happens if I match a patient?
A: More testing will be done to see if you are the best possible match for the patient. We may ask for another cheek swab or blood sample or we may be able to use a stored sample. Though almost all patient information is confidential, we can tell you the patient's age, gender and disease.
If the patient's doctor selects you as the best donor for the patient, we will schedule an information session so you can learn more about the donation process, risks and side effects. At that time, we can also tell you the type of donation the patient's doctor has requested — either bone marrow or cells collected from the blood, (PBSC) donation.

Excerpt from www.marrow.org
http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#match


Q: Who pays for the donation process?
A: Donors never pay for donating, and are never paid to donate.

All medical costs for the donation procedure are covered by the National Marrow Donor Program (NMDP), which operates the Be The Match Registry, or by the patient's medical insurance, as are travel expenses and other non-medical costs. The only costs to the donor might be time taken off from work.

Excerpt from www.marrow.org
http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#match

Chemo: Cycle 12... & Bone Marrow Transplant Consult

Last Tuesday I had chemo session #12 (of 16)... the neuropathy in my fingers and toes is definitely difficult to deal with.  It's like the outer shell (the skin) is numb, but the nerves underneath are super sensitive, especially my toes, my toes are definitely more severe.  Even my cat rubbing his face on my toes sends out an explosion of tiny little electrical pulses.  My fingers... I have trouble picking things up, trying to go through paperwork, turning pages, I drop things a lot.


Back at the end of May I had the Bone Marrow Transplant (BMT) consultation, I was given a lot of information and they took a lot of blood.  I found out that I will be hospitalized for a month and then have to live over there near the hospital for three months, we live about an hour from the hospital but that is too far away, I could die before we got there if I got sick or had a complication. I will need 24 hour care. The insurance doesn't cover the expenses for this. We will have to come up with the money for housing and my mom is going to have to live over there with me and be my caregiver/nurse.  They sent tests out to my brother and sister to see if they might be a match.  *The kits are swabs for your checks.* 

I found out last Friday... neither one was a match. :(  *bummer*

They are going to check the national registry to see if they can find a match, she said she would call early this week.  You can wait for weeks, months, sometimes years before a match is found.

If you are interested in becoming a donor, please go to www.bethematch.org and register, they will send you a kit in the mail, you swab your cheeks and send the swabs back.  You must be between the ages of 18 and 60 to donate.  If for some reason you don't qualify to donate, please consider making a financial donation.  It helps cover the costs for others to donate.

For information, questions, facts & myths... go here:

http://marrow.org/Join/Join_the_Registry.aspx

If you are interested in donating to my Lymphoma Fund for uncovered costs associated with my bone marrow transplant, there is a link on the top right column of this blog.  It is through PayPal, but you do not need a PayPal account to donate, just put in the amount and go down to where it says "Don't have a PayPal account?" and click on "Continue".  Any amount would be most appreciated.

My biggest concern is how to pay for housing for the 3 months I will need to spend over there.  They have a place, similar to the Ronald McDonald House, they try to make it as affordable as possible, we might be able to get into that if they have space available. We may have to get a motel room or see if we can find a furnished apartment.  We won't know until we find a match and then see what's available.

PET Scan, CT Scan & Results

Monday afternoon on the 5th, I received a message from the cancer center... I needed to come in for a B-12 shot a week before my first chemo, "...so we're canceling your chemo tomorrow and just come in for the shot".

Uhhh??  This will be my 6th chemo and I've never had to get a B-12 shot before?? Umm... **complete confusion**

So I call the cancer center, get voicemail (of course), and leave a message.  "Your message was a bit erratic, this is my 6th chemo not my 1st, very confused, please call back asap."  While I'm waiting for a call back I deduce that my doctor has probably decided to switch me to a different chemo for some reason and failed to include me in the decision.  Slightly irritated, feeling like she again is not giving it enough time, but assuming she has a good reason.

I finally received a call back, the nurse didn't realize I had no idea... decided it may be a note for a second line of defense just in case and told me she would double check with the doctor and call me back.

That's exactly what it was... my doctor was waiting for the results of my scans and wanted to have other medicine ready if the scans weren't good.  Unfortunately, they couldn't get me in for scans as quickly as before and was set up for the same day as my chemo.

Soooo, Tuesday, Mar. 6th, I went in for my PET scan followed by a CT scan then over to the cancer center for the B-12 shot (in case I needed to switch chemo's).  A consultation was set up for Thur., Mar. 8th for scan results.


Thursday, March 8, 2012:  Scan Results

PET scan showed that the area under my armpit was not glowing, the cancer is inactive.  So it seems the radiation did it's job.  There is still a mass there, hopefully it will continue to shrink.

The front chest area is glowing more than it was at the last scan in November.  That has grown a bit more.  There was no radiation done in that area.

The lump we recently found on my left leg was not glowing.  We don't know how long the lump has been there, so it could be one of two things:

• it was active and the chemo is working, or
• it is just forming and not yet active

The active cancer that was peppering the bone marrow in my pelvic area... it is no longer glowing, it has become inactive.  There has been no radiation in that area either... so that only means one thing... the chemo appears to be working.

This is fantastic news... but let's keep it realistic, it may not mean as much as it sounds.  Remember, I did CHOP chemotherapy last spring, when I was done the scans showed the cancer inactive.  I appeared to be in remission.  Two weeks later I had a lump growing in my arm and roughly six weeks after, the mass under my arm grew back.  When we did the scan it showed the cancer was back and had spread to other places... and it was becoming more aggressive.

This does mean that since it appears to be working I may now be able to get the bone marrow transplant.  (I recently found out you have to be in a certain amount of remission before you will be considered for a BMT) My doctor decided to keep me on the same chemo I've been taking and has already put a call in to UNC and Duke about the bone marrow transplant.  Then I set up my chemo for the following day and had my bloodwork done.

So it's mixed news... high hopes for the best with a smidge of reality for good measure.

Chemo: Cycle 5...

I had my 5th cycle of chemo on Feb. 14th, Valentines Day...  It went well, I got hooked up to the meds then sat back with my mocha and listened to a podcast of "Alcatraz" by Jorge Garcia and Bethany Shady (Sidekick22), you can also listen and follow at Diego's Soul Patch.

If you didn't know, Jorge played Hugo (Hurley) on "LOST" and is currently playing Dr. Diego Soto (Doc) on "Alcatraz".  Bethany is Jorge's girlfriend and partner for the podcast... they had also done a podcast for "LOST" when that was going on... that's where I got hooked.  **In case you decide it's better late than never... Geronimo Jack's Beard: A Lost Podcast.**

Chemo: Cycle 4... or 2-2?

I was having a severe pain in my left uterine area around January 19th/20th, it was only when I needed to urinate, but no pain during urination or anything, and after I urinated it was gone. It felt like my uterus was being pulled out or falling out or something. It was so severe I could barely walk. It lasted about 2 days or so. Just plain weird!

On the day of my chemo, Jan. 24th, I was having pain behind my left ear, the left side of my head, and little in my left shoulder… I was afraid I may have a blood clot. The P.A. and I decided to just wait and watch since none of it made any real sense. It wasn’t like I had a cold or sinus infection, just another weird situation. The pain moved to the right side a few days later and then disappeared.

Chemo went well… no incident.

Friday, Jan. 27th, I woke up that afternoon coughing and pain in my right lung area. By evening I was running a temperature. At 8:45 pm my temp was 101.1°, I called the on-call doctor. She put me on antibiotics, said it might be pneumonia. I didn’t think it was because the cough was not a cold kind of cough and I hadn’t been sick. You don’t wake up with pneumonia, you build up to it. But this diagnosis was with limited info and over the phone. Anyways… by 11:30 pm my temp was 101.5°… at 1:00 am it was 101.6°.

Saturday I started taking Percocet w/Acetaminophen for the pain and trying to get temp down. I was also packing my head in ice. The pain was in my right lung/chest area and extending up to my shoulder and neck area. I was in so much pain I couldn’t sleep.

By the weekend of Feb. 4th, the pain wasn’t as bad and I had this poking feeling in my throat/esophagus area and a coarseness that was causing the cough. It took me awhile but finally realized it was a yeast infection in my throat… also developed a vaginal yeast infection… all from the horrible antibiotics. So I started taking the Fluconazole (Diflucan) I had left over from December antibiotic yeast outbreak and Monistat 3 (went thru 2 boxes of it). Still couldn’t rid my body of all the yeast. On Friday, Feb. 10th, I called my doctor and got another prescription of Fluconazole, this one was 150 mg tablets instead of the 100 mg. I took one Friday night and meant to take another one on Saturday, but forgot to… regardless, the one was enough to finish eliminating the yeast. THANK GOD!!!!

So now I’m yeast free, cough free, and pain free… except for the uterine pain I’m having again when I have to urinate. What the hell!??? I can't get a break!

My Oncologist, Dr. Lola Olajide: Rex on Call - Breast Cancer

Here is my oncologist... Dr. Lola Olajide, Rex Hematology Oncology Associates (Rex Cancer Center).

Chemo: Cycle 3... or 1-2?

I started that new chemo again --- the one geared towards my type of Lymphoma --- on Jan. 3rd, my birthday. It went okay; mom couldn’t go in with me, it’s that time of year when colds and flu are abound so no friends or family are allowed in the chemo rooms. She won’t be able to go in until April… so I get kind of bored sitting in there by myself.

I'm not sure if this counts as Chemo Cycle 3 or Cycle 1-2.

On the way home from chemo mom’s truck broke down. The radiator blew. It was about 35° out and I didn’t have a coat. We had to sit and wait for AAA to show up and for my sister to come pick us up. I was supposed to be having a special birthday dinner and the family was coming, but since the chemo took longer than expected and then the break-down, we wouldn’t have enough time to make the dinner without it running really late. So we opted to stop for Chinese take-out instead.

Cancer Post: Thanksgiving - Hospital Update

Some of you already know that last Thanksgiving I was in the hospital again. I was one week away from my third treatment of this new chemo. The masses under my armpit blew up real big, plus I had inflammation and swelling of my breast. I couldn’t even put my arm down; it was sticking out from my body in a weird position because of all the swelling. The nerves in my arm became impinged and the back of my arm is still numb, possibly permanently. My right breast was almost three times its normal size, burning hot and red as can be. I had to pack down in ice for days.

I was doing laundry on Monday afternoon, Nov. 21st, and I was trying to open the bleach bottle, but the bottle slipped across the dryer away from me and my arm jerked trying to stop it. It hurt really bad… so much I was swearing. I put some ice on it in case I pulled something and within 2 hours it had swelled quite a bit. I kept ice on it while I slept that night, but when I woke up I couldn’t feel the back of my arm and the swelling was much worse. I called the Cancer Center and went down for them to check me out. I was admitted on Tuesday, November 22nd, but the breast swelling didn’t happen until Thanksgiving morning. They decided it was too dangerous to do surgery because of the blood vessels and nerves involved, so Wednesday they gave me radiation to the area.

Thanksgiving morning the on-call doctor woke me up and quickly ran through my case, I asked him for a hydrochlorothiazide and a furosemide pill (Water pill/Lasik) since I had some swelling and they had me on a sodium drip (to which I am sensitive to and causes me to swell), he denied me one of my Lasik’s. I explained I had to take them together because just one or the other didn’t have an effect on me, that’s why I was prescribed both of them… and I only take them as needed. He refused stating he thought it was causing my elevated sugar level… “Funny, I haven’t had any for several weeks, guess THAT can’t be the cause.” But of course, he’s the doctor… that went to school… he couldn’t be wrong… and of course would never admit to being wrong. Yes, he was one of THOSE doctors!

Around 10:30 am I was eating my breakfast when I leaned forward and my breast pressed against my leg, it was very painful. I looked down my gown, saw how big it was, how red it was, felt how hot it was, and the area around the nipple was rock hard. It scared the hell out of me and I started to cry… I thought for sure the cancer had moved into my breast. I called my nurse because I didn’t know what else to do… asked him to please come as soon as possible. After I explained and showed him, he put in a call for the on-call doctor to stop in. I waited for a little while and when he did show up… he didn’t come past the entryway, asked me what the problem seemed to be, I was a little taken aback because he didn’t come in or over to me and the way he questioned me… so I stood up and raised my gown. He said that’s probably just “something-something-or-other” and left. I was in such shock I don’t remember what he said… he never came in, never examined the breast, and didn’t even bother to explain the “something-something-or-other”. I was so upset and couldn’t stop crying.

The nurse that came in later that evening took care of it like the doctor should have… she examined the breast, marked the redness pattern with a marker so we could gauge if it was expanding or going away, then started packing me in ice. The next day the doctor came in, with a nurse for his protection; evidently word got out about what happened and that a friend of mine had called the hospital until she got hold of someone in charge who then came to see me about the situation. He lied outright about the situation, denying everything. I started to get upset because he was so lying and when I started to cry I decided that’s enough. I told him I wasn’t going to let him upset me again and I wanted him to leave my room immediately. I told him I wanted to be discharged after my radiation because I felt I was not getting the care I needed and I would rather go home and take care of myself. So I basically kicked him out of my room.

I had my radiation, was preparing to leave when my nurse came in with a prescription for antibiotics and pain killers. I thought, these are the antibiotics I was on when my breast swelled up and became inflamed… obviously they weren’t doing the job. So I had my nurse call the doctor and inquire about a different antibiotic… he denied my request. Oh, big surprise. **When I saw someone on Monday at the Cancer Center, one of the first questions I was asked was who and why had I been sent home with those antibiotics… then I was told to quit taking them and was prescribed something else… THANK YOU! Looks like I’m not so dumb am I!**

I went home, kept myself packed in ice, took my meds, took my lasiks which got rid of A LOT of fluids built up in my system, and the following Monday, Nov. 28th – Dec. 13th did daily radiation treatments, except on weekends.

Chemo: Cycle 2

Had my second round of chemo last Monday.  Took longer than expected again... was there until 3 pm.  Figure it's going to be that way always.

Was up most of Monday night because of the cramping.  Better on Tuesday, Wednesday, and Thursday but had bad cramping again on Friday.  I didn't take the Miralax on Thursday because I needed to go to Sam's Club.  So I guess that proves that the Miralax is helping.  Still tired.

Labs showed my INR dropped again... so now I'm taking 7.5 mg of Coumadin 4 days a week, and 5 mg for 3 days a week.

Talked with the doctor about the bone marrow transplant.  We are going to finish this regimen of chemo to see if it works, if doesn't, then we'll go ahead with the bone marrow transplant.  She just wants me to keep going on the financial end so if and when it's time, we're prepared.  Even if this chemo puts me into remission for a while, with this type of cancer, eventually I will need the bone marrow transplant.  I opened a separate checking account to deposit the funds into, I've got the PayPal account set up to receive money, and you don't have to have a PayPal account to donate.  Now working on setting up the button and link.

Another Medication Change

Last Monday I quit taking that Bentyl (Dicyclomine) for the cramping.  It was causing a severe lack of concentration and I just could not focus at all, I was having a difficult time even thinking straight.  I spent most of my time laying in bed sleeping or staring at the tv or out the window... sometimes at my computer screen watching my bubbles screensaver.  I just wasn't accomplishing anything.  It also caused me to have real blurry and fuzzy vision, so much so I couldn't drive.  And weirdly enough, I started breaking out, which, in addition to all my other side effects, also cleared up a few days after stopping the medication.

I'm trying something a little different... I'm taking half a Miralax everyday to see if that will help.  So far I'm just having minor cramping.  Not sure if it's the Miralax regimen or just that it's been a couple of weeks since my chemo and maybe the medication has gone out of my system thus causing the cramping to diminish.  My next chemo is Monday so I guess we'll be finding out.  I'm going to talk to the doctor to see if there is some other medication I can try... not sure if taking Miralax everday is healthy.

On Abortion Clinics, Pro-Lifers Are 'Close'-Minded

Family Research Council:  Washington Update

Americans need to understand that when organizations like Planned Parenthood insist that women have a "right" to abortion, they don't mean a safe one. In clinics across the country, vulnerable women are shuttled in and out of clinics that look more like combat zones than surgical centers. Kermit Gosnell, who is on trial for 261 pages of abortion horrors at his Philadelphia clinic, put a real face on the "choice" movement. For his patients--and so many others--"choice" means being subjected to rusty equipment, bloodstained blankets, and untrained staff. And unfortunately, Gosnell is just one example of a nationwide nightmare. Like other clinic operators, the millionaire doctor shirked on safety to grow his profit margins. And thanks to a shift in pro-life strategy, that's all starting to change. In states across the country, America is getting serious about protecting women with airtight regulations for abortion clinics. In fact, when I was in the Louisiana legislature, I authored a bill to do exactly that. While conservatives are still trying to change people's minds about abortion, they're putting more emphasis on protecting the mothers that seek it. To do that, pro-lifers are cracking down on abortion at the source. It's what Dr. Theodore Joyce calls "The Supply-Side Economics of Abortion."

Yesterday, he expanded on this phenomenon in an article published by the New England Journal of Medicine. "Early approaches to restricting abortion access were directed largely at [women]--the demand side of the market and perhaps frustrated by many women's determination to overcome demand-side hurdles, abortion opponents have turned to supply-side restrictions, focusing on providers of abortion services. This strategy is likely to be more effective." Believe it or not, abortion is one of the least regulated surgeries in the United States. In Pennsylvania, for instance, one district attorney said the state's clinics have fewer regulations than beauty salons or public schools. So one approach pro-lifers have taken, most recently in Virginia and Kansas, is passing laws that force abortion clinics to meet the same standards as ambulatory hospitals. That means more licensed staff, better sanitation, bigger rooms, and cutting-edge equipment. To most of us, that only sounds logical. But to abortion clinics, the bulk of which cut corners to make a profit, it represents a huge hurdle in doing business. For them, the emphasis has always been on revenue, not patient safety. When they're asked to comply with strict new health standards, most would rather shut down than protect women.

Take the state of Texas, for instance. Seven years ago, legislators passed a law that required all abortions at or after 16 weeks be performed in a hospital or ambulatory surgical center. Dr. Joyce points out that the policy had a shocking effect on the abortion rate. In one year, "the number of abortions performed in Texas at or after 16 weeks of gestation dropped by 88%, from 3,642 in 2003 to 446 in 2004." In Arizona, he explains, bearing down on the clinics had a similar effect. Leaders there passed a rule that only doctors could perform abortions. "As a result," Dr. Joyce writes, "Planned Parenthood of Arizona stopped performing abortion services in three clinics, since only nurse practitioners had been available&" Ironically, the same groups spending millions of dollars to protect abortion are the ones fighting these laws. That, more than anything, should expose the pro-abortion movement for what it is: cold, calculating opportunists who see women as profit, not patients.


http://www.frc.org/washingtonupdate/on-abortion-clinics-pro-lifers-are-close-minded

New Medication Added

I stopped taking the Allopurinol last Friday and the cramping has just gotten worse and worse since I stopped.  I'm having severe cramping now.  Extremely tired... like I just can't go on.  Spending most my time in bed sleeping.  Still having a problem with the lack of concentration.

I called the doctor today and she prescribed a new med, Bentyl (Dicyclomine), which is like Tylenol for your colon.  It helps to reduce stomach and intestinal cramping, it slows the natural movements of the gut and relaxing the muscles in the stomach and intestines.

This medication can cause dizziness, drowsiness, lightheadedness, weakness, and blurred vision.  Also can cause dry eyes, dry mouth, nausea, constipation and abdominal bloating.  Oh how fun!!  We'll see how it goes.

Labs Today

I had to go and do labs... 45 minute drive to take some blood and check my INR level.  That's to make sure my blood is thin enough, I guess.  Don't want to clot.

My level was low... can't remember the exact number, but was below a 2.  They want it around 2.5.  So they upped my Coumadin dosage a little bit, but only for two days a week.  So now it's 5 mg per day, except two days a week I have to take 7.5 mg.  They also want me to come back for labs in 10-14 days.

14 days would be the Friday before my next chemo, so I hoped we could just wait the 2 extra days and do it on that Monday.  Nooooo, I have to make an extra trip.  So my appointment is Wednesday, Nov. 2nd at 10:00 am.  :(

So far this week I've only noticed a few minor reactions... not sure what is the chemo and what may be the Allopurinol.  Or maybe it was just the mass death of cancer cells.  Anyways, tonight is my last day for taking the Allopurinol... so that will hopefully shed some light in the next few days.

I have had some cramping, very tired (no energy what-so-ever), some dizziness, awful lack of concentration.  Have slept a great deal.  No nausea, but a decrease in appetite.

We'll see how it goes next week.

Chemo: Cycle 1

Had my first round (or cycle, as they refer to it) of the new chemotherapy today.  Had a bit of trouble accessing the port when we first got started.  They couldn't find the place  the needle had to go in.  Freaked the nurse out, she seemed traumatized over it.  My arm was still a little sore and at one point I DID feel the needle going in my arm... which caused me to flinch.  But they soon figured it out and I'm usually a pretty good sport about this kind of stuff.  Sometimes things like this happen.  Now they know what they're looking for.

So far no bad side effects, no nausea.  Just real tired.  Was there quite a bit longer than expected today.  Arrived at 12:40 pm and left at 3:40 pm.  Shouldn't take that long in the future.  Labs, consult with doctor, chemo... should only be about an hour... hour and a half at most.

I'm the first, and only patient at this time, getting this particular drug at Rex Cancer Center.  How cool is that... I'm a PIONEER!

The drug is Brentuximab Vedotin, also known as Adcetris.
Seattle Genetics