Update September 2015

It has almost been a year since I went to L.A. for my 2nd stem cell transplant.  While my body seems to have accepted my sister's cells well; I have not had graft vs. host problems; it continues to have cancer. 

After seeing that the cancer continued to grow/spread, the doctor's first option was to take me off the anti-rejection meds and hope that it would cause something called graft vs. disease to happen.  They were hoping my sister's cells would just go crazy, killing that cancer.  Unfortunately, this didn't happen.

Next, my doctor put me on an oral medication called Afinitor.  It says it is an anti-rejection medication, but I believe the doctor said they used it to try to stimulate my immune system to fight cancer growth.  (Don't quote me on that one.)

Since my cancer seemed to be unresponsive, and continued to worsen, I restarted chemotherapy in April or May.  They put me on a combination of Bendamustine and Rituximab.  Bendamustine is the chemotherapy that I was on before my transplant that seemed to be quite effective.  The Rituximab is not a chemotherapy, but a targeted therapy that seeks out B cells with CD20 on them. 

I went for an updated PET scan in August to see how or if my cancer was responding to the treatment...and the cancer is still progressing.  Most of the growth is on my left side.  I have a mass that is quite large under my collarbone and into my underarm on my left side that I feel is hindering my entire left side from being able to flush out the cancer. (That of course is just my opinion.)

My doctors felt that my best option is to take the anti-pd1 drug, Keytruda.  The drug is not yet approved to treat Hodgkins, but I am receiving the drug off-label, or not for its intended use. It has had good results treating recurrent Hodgkin's in the trials, however they never tested it on someone who has received and allogeneic transplant like I have. The doctor said they don't know what could happen to me; it could cause severe graft vs. host disease.

I know that the Lord's Will will be done, and I am for the most part at peace with that.  I know where I am going when I die on this earth; I am going to live in Heaven, with no pain, no sadness, no cancer.  I will be worshipping God and Jesus, with my fellow believers who have gone before me.  I know that God would not take me out of this world and away from my children unless it was a part of His larger plan.  I know that God loves my children more than I ever could, and He wouldn't take me away if it would jeopardize their future salvation.  These are the truths that I hold on to when I am thinking that I might not be there for big events in their lives; graduation, marriage, birth of their children, and most importantly when they accept Christ as Savior. 

That being said, that doesn't mean that I don't believe in miracles!  That doesn't mean that I don't continue to pray for complete healing.  I know that God holds the whole world in His hands, that He is in command of my destiny.  I know that He has plans for me. 

So if you will....keep me in your prayers. 

Transplant #2

So, after doing two more rounds of chemo, two more PET scans, and repeating all my previous tests (EKG, echo, PFT and blood work) I was approved for my second transplant.  It is sort of a bittersweet accomplishment because I am ready to do the transplant and glad I got approved; but at the same time sad that I had to leave my family and just dreading the whole process.

This transplant will be a little different than my last one.  The chemo I am doing this time is different and is given for a longer time period.  I will have 8 days of chemo and then my rest day before they infuse the stem cells.  This time, since the stem cells came from my sister and not myself there is a chance of rejection and graft versus host disease.

I started my chemo last night at about 10pm.  My first chemo is Busulfan, which they are infusing over 2 hours every six hours.  So I get my doses at about 10 and 4.  I will get a total of 12 doses before moving on to the next chemo Fludarabine, which they give every 24 hours for a total of 5 times.

It is so much easier to think of the things that I will be missing out on by being here in LA than in finding reasons to be appreciative of it, but that is exactly what I need to do.  The pastor at my church  has talked about how happiness depends on what is happening to or around you, but joy is more than that, deeper than that.  That is what I want to exhibit through this whole process, joy.

Thank you for your continued prayers.

One more year

I was looking back at my blog and realized that I haven't updated it in over a year...oops!  To be honest, I get tired of being a Debbie Downer, I get tired of getting good news and then bad news...so I got tired of sharing it too.

Last June I was told I still had some spots on my scan but I was in remission.  When I went for a follow-up scan in August, the cancer was all over.  I remember the scan report saying that all lymph systems were involved and there was activity in my bones...it wasn't good news at all. 

The doctors talked about my options at the time.  They really wanted me to get on this drug trial, but I missed the cutoff, so they began me on a new (to me) chemo treatment of Bendamustine.  I had treatment two days a week every 4 weeks.  I completed a total of six cycles over the next several months.  Some of my treatments had to be pushed back because my counts hadn't recovered as well as they needed to in order to receive the next treatment.  This treatment has been really hard on my platelet counts. 

In January, I believe it was after 3 or 4 cycles of treatment, I had a GREAT scan!  It said that pretty much everything was gone.  So, after a positive scan my doctors began to prepare for the next steps and plan out the future treatment plan.  They said that my best option of getting rid of my cancer would be to do another stem cell transplant, this time with donor cells instead of my own.  There is a 25% chance of having a sibling as a match and I figuring having three siblings just increased those chances.  My siblings and I sent in our blood samples so that it could be determined if any of them were my HLA match.  I was relieved when we found out that my sister was a match! 

During this time, I finished my 6 cycles of treatment and also completed my tests required for approval; to make sure I am healthy enough for transplant.  The transplant was approved and then it was my sisters turn to have tests to make sure she was healthy enough to donate.  After they got her results; and she of course was healthy enough; they started the mobilization of her cells.  She had to get a shot of Neupogen daily for 4 days and then she went to the hemapheresis unit of UCLA and they collected her stem cells.  She was able to get all they needed after one day of donation so she was able to go home.

Before I could be admitted for my transplant they needed one last test, an updated PET scan.  It had been a couple of months since my last chemo and I had started to feel some swollen lymph nodes so it wasn't really a surprise to me when I found out my scan wasn't very good.  They started me back on my chemo right away.  The plan is to scan me again in a few weeks and see whether I need another cycle of treatment or if I can go to transplant.  So, that is where I am at now.  Just waiting to see what the next scan says. 

June2013

I am sorry that I haven't done an update recently...I had a lot of things going on at about the same time, so I hope you will forgive me.  My little girl had a birthday, and the older one a recital, and my husband got to come home!!! Yay! 

Also, I got an updated PET scan.  The results were good.  There were two small areas that showed some low activity, but the doctor says
                I'M IN REMISSION! 
The spots will have to be monitored, of course, but it was a good result.  I am not going to lie...I wanted to be able to say I was cancer free. 

The scan also showed there was some fluid around my right lung, which I had drained on Monday.  They were able to get a liter of fluid out, which surprised me.  I was a little uncomfortable as my lung  began to expand back out.  I am still a little sore where they inserted the tube, but nothing major.

Thank you for your prayers and support.  Please rejoice and praise God with me for the good news that I have been given.

I'm coming home

Since my last update, I did have to get more blood and platelets while in the hospital.  Then on Sunday, I was released!  It was so nice to get out.  My mother-in-law flew in Saturday morning, to be my caregiver when I was released.  She got here just in time.  

Monday, I had an appointment at the clinic.  They went over some of the precautions that I will have to take over the next several months as my body continues to recover.  Most of it is probably common sense; like avoiding crowds and sick people.  Also, I have to avoid food that sits out like at buffets, salad bars, and fast food places.  One thing that I wouldn't have thought about is avoiding people who have had recent live vaccinations.  They explained that the worst ones for me to be around would be the chicken pox and shingle vaccines.  When people are given these vaccines, their bodies shed them for several weeks which is fine for most people.  However, with my low immune system, it could actually give me the chicken pox, which would not be good.

My blood counts were fine on Monday, so I didn't have to get any blood products.  I didn't get my counts checked again until Thursday, and found out today that my counts are good. They are all coming up by themselves.  My platelets are high enough that they can now take out my line.  They are trying to get it scheduled for Monday or Tuesday and then I can go home!!! Yay!!!

I am not sure when they will scan me to make sure the cancer is gone but I will let you know when I know.

Thank you for the prayers. I am going home soon!!!

Two weeks down

A week ago I received my stem cell transplant. They brought my stem cells in a portable freezer and defrosted them one at a time. Once it was defrosted, they began to infuse them through my IV. Each bag needed to be transfused within 15 min of being defrosted.  The stem cells, or maybe it was the preservative added to them, made the whole room smell and gave me a strong taste in my mouth.  I had heard that it would smell, but luckily it didn't smell bad. My nurse for the day said she thought it smelled like canned sweet corn, so I'll go with that.  It was a sweet smell and a sweet taste.  A few days later when I was walking the halls, I smelled that smell and knew someone else had received their transplant.

Since then, my body has just been trying to recover.  I re-read my last post and thought, "Well that was kind of dramatic." However the truth is I wouldn't have survived out of the hospital. Since my transplant I have received blood again and platelets twice. For the last several days I have been getting neupogen injections to raise my white count.

I'm not sure when, but I developed a rash over my body.  At first I thought it was a reaction to the adhesive, but then thought it was caused by this strong anti-bacterial soap they were putting in my bath water.  However, it could have been a reaction to the chemo or some of the other meds they have me on.  I think it's getting better, but some parts of my skin look worse due to the petechial hemorrageing caused by my low platelet counts.

I also have some mouth sores on my right side.  So, the right side of my mouth and throat are sore.  It makes it more difficult to eat the already not very appetizing food.

The sores and rash should leave as my counts get higher and my body can start healing. Other than the mouth pain, I have been feeling fine.  I'm just ready to get out of here. Hopefully they will let me out by Monday.  It will be nice to go outside again, and to have different food to eat.  Then I will just be one step closer to actually getting to go home and seeing my family again.

My hair began falling out by the handfuls, so today I let them shave it off....Oh well...it will grow back again.

Thank you for your prayers. God is getting me through this!

One week down..

One week ago, I flew into LA and was admitted to the hospital.  While time has gone by at a normal pace...I really wish I could just fast forward through the coming weeks.  I am ready to go home... but now I have to stay here. After all that chemo over the last week, my blood counts will be dropping and my immune system will down.  I have to stay in the hospital so I can live through this. This next week is going to be the hard one.  

I know that God is in control and that He will get me through this, but sometimes I let the fear and anxiety get the best of me.  Please keep me in your prayers. Just say a quick prayer for me when I come to your mind.

Tomorrow they will be giving me my stem cells back.  Then, I just have to get my counts up.

The schedule

I was admitted to the hospital yesterday.  I got into my room about 5 and then began all the interviews with nurses and doctors. This is a teaching hospital so I will be questioned by many different people who are learning, as well as those who are handling my care.

Here is kind of a schedule of what I will be doing for the next couple weeks.
Thursday, April 18th-  BCNU chemo 
Friday-Monday, April 19th-22nd-  etoposide and arabinoside each twice a day
Tuesday, April 23rd- melphalan
Wednesday, April 24th - rest
Thursday, April 25th- stem cell infusion

What they are doing is hitting me with high doses of chemo, then rescuing me with my stem cells, which they just put back in my body through my IV line.  After I get my stem cells the rest is about monitoring my recovery.  My blood counts will drop really low the week following my chemo.  I may need blood or platelet infusions, and I am at a high risk for infection.

When they fill like my counts are good enough, usually 10-15 days after receiving stem cells, I will be released but have to stay in the area for up to two more weeks before I get to go home.  It really all depends on how well and how quickly I recover.

Transplant is Back On

I finished my second COAP cycle on March 21^st.  The next week, March 25^th-the 29^th, my doctor had me taking a bunch of different tests.  I had an EKG, an echocardiogram, a pulmonary exam (lung function test), a bunch of labs, and of course a new PET scan.  Everything looked good!! EVEN the PET scan!! Yay!! Thank you Jesus!!!

 

Now all I had to do was wait for my LA doctor to say that everything looked good enough for transplant.  My transplant coordinator went ahead and scheduled me to be admitted on April 8^th.  I had to call my Mom and tell her she needed to be here in person by Friday the 5^th, so that I could get her a long-term pass for base access.  So, my parents got here Thursday evening and Friday we were able to get the passes for my Mom, with help from my husband’s squadron.   I also received a call from my coordinator and was told they didn’t have enough information from my scans to approve me yet, so she rescheduled me for admittance on April 11^th.  On Wednesday, the 10^th, I still hadn’t heard if they were going to approve my transplant, which I admit was a bit infuriating.  I needed to tell my kids if I was going to be leaving the next day and not coming back for several weeks.  So, I called the coordinator to find out what she knew and also inform her that I had a fever and cough.  When she got back to me, she said the doctor had approved my transplant!! But I couldn’t be admitted with an active infection, so I wouldn’t be admitted Thursday after-all.   However, the doctor still wanted me to come to LA, so she could check me out herself.  So, I flew to LA and the doctor officially approved my transplant.  I signed my paperwork and was reminded of the process and risks, etc. involved with the transplant.  They said as long as I am over this bug, I will be admitted Wednesday, April 17^th.

 

So, it looks like this transplant is officially back on!!  It was almost a year ago that I thought I was going to have this transplant but didn’t get to after a PET scan showed new growth.  One thing that I have been learning the last few months is that God’s timing is perfect.  I may never know why, but I definitely believe that my transplant postponement happened for a reason.

 

I do appreciate and ask for your continued prayers, not only for me, but for my family.  I know that it is hard on my husband that he is not here at this time, and my girls….well they have never gone a day without their Mama.  And on top of that, they don’t have their Daddy at home right now either.  Although they will have my Mom here, which I am so thankful for, I know this separation is going to be hard for them to deal with.  So, please remember them in your prayers.  Thank you!

COAP- Cycle 1

I have now had both infusions of my chemo, but I am still taking my prednisone until day 14, or 15 since I started a day late.

When I got home from my first infusion, on Valentine's, I just felt kind of drugged...high...kind of out of it.  It was a strange feeling to say the least.  That night, for some reason, I stayed up doing random searches on the computer.  I think I was trying to plan the wedding I still want to have. :) (I blame this on Sara for making me look at bridesmaid dresses.)  I also discovered that the girls Valentine's bouquet had both of their birth month flowers (not on purpose), so then I had to find out what the husband's and mine looked like when combined with the girls.  Just random, strange stuff...I think those drugs really gave me some kind of high.

For the next few days, I continued to have a kind of lightheaded, off-balance sort of feeling.  It is kind of hard to explain.  I took my temperature, since I had been having fevers previously, but they stopped.  Actually my temperature was low..like 96-97, but I felt fine.  The night sweats pretty much stopped also.  I still sweat, or maybe drain, at night, but not bad.  I am not waking up soaked, and the sheets don't really get wet at all. 

The large lump that I had under my underarm started going down right away, I think.  It is almost non-existent now, which I think is awesome considering it was the size of a walnut.  The doctor said the lump, or possibly multiple lumps, were blocking my lymphatic drainage because I was having strange swelling, or retention, on my left side.  As the lump has disappeared, so has this strange swelling. Yay!  Also, my rash, which the doctor doesn't believe is from my cancer, but I always get with my cancer, is gone.  My skin is nice and smooth again!

I was finally starting to feel right in the head again, then it was Thursday again, and time for another chemo. The second infusion didn't seem to make me as crazy.  I still felt pretty normal.  At least, until last night. At about 4:30, I smelt something that made me crave Chinese food.  I came downstairs and googled recipes for fried rice and teriyaki sauce and started cooking.  I was finished making, and even eating a little after 6, which is really strange for me.  I didn't get distracted...I was very focused on making that food.  And, it was delicious..at least it was exactly what I wanted. Yum!  I think the girls were a bit confused because we don't normally eat that early, but...

I am still trying to eat good, but it is harder.  Maybe it is the steroids, or whatever else they give me, but sometimes I just crave food and have to eat then. I guess I need to stock up on healthier snacks again.  I seem to be losing a little bit more weight, possibly because of the cancer or the treatment.  It is hard to tell you when I lost it because my scale at home hasn't been working, but when they weighed me on Thursday I was down to 138.  (Before diet I was weighing 170-175 and with diet I had gotten down to about 145.)

Thank you for your continued support and prayers. 

Valentine Chemo

Valentine's Day


Today I woke up already dreading having to go to chemo today, but...

I tried making the girls special Valentine pancakes...neither of them liked or wanted them...they wanted their regular pancakes. :(  Well, I tried.

Then I really just got the girls and I ready.  I packed the girls' lunches and dropped them of with the neighbor for their Valentine party and play date. :) And packed a to-go salad for me.

Then, off I went to get my new chemo.  I talked to the doctor and he explained that some of the drugs were different than the chemo regimen that we had previously discussed because these drugs are simply unavailable now; no longer made.  So instead of C-MOPP, I am on a regimen of COAP; Cyclophosphamide, Vincristine(Onocovin), Cytarabine(ARA-C), and Prednisone.  My chemo cycles are 28 days long.  I have chemo treatments on day 1 (today) and day 8 (next Thursday), then they want me to go back to the office for a shot of Neulasta(just helps blood counts) on day 9.  So, chemo once a week for two weeks, off two weeks, repeat.  The predisone is a tablet I am supposed to take day 1-14.

I forgot to mention in my previous post that I am now having at least somewhat frequent fevers, mostly at night.  The nights that my fever are the highest, I have night sweats. Which means that I wake up 1-3 times throughout the night drenched; my clothes and the sheets below and on top of me soaked. Yuck!  So, I change my clothes and switch to the other side of the bed, hoping it doesn't happen again before I wake up.  Both the fever and night sweats are common for my lymphoma but...I think we are going to need a new mattress when this is over. :)

I think that is it for now...Thank you for your continued support, love, and prayers!

Update February 2013

Well I guess I need to write an update since some of you might be wondering what is going on with me.

I had to re-schedule my PET scan for December 15th.  I got the results a week or so later and the doctor said the cancer is still growing and spreading.  There were some new areas of activity.  One of those areas was my underarms, specifically my left side.  What is weird is that I felt a lump, but it just kind of came out of nowhere...it was large quickly...and painful, so I didn't really know that it was my lymphoma until the doctor confirmed it.  I was just thinking, "oh great, what else is wrong with me".

When the doctor told me my results, I asked if I could be re-biopsied.  I just wanted an additional confirmation that we were fighting the right disease.  So, mid-January (sorry don't remember the date) I went in to have a biopsy done.  They took a core needle biopsy from my painful underarm lymph node.  Which for some strange reason helped the lump to be less painful.

The same day as my biopsy, I also had a dye study done on my port.  I had started having pain when the nurses flushed my port.  When I went in early January to have my port flushed I warned to nurse and when she tried to push the saline in she said that it was hard to do.  She could also tell that it was quite painful for me and asked if it felt like pain or pressure, to which I answered pressure.  It is a strange feeling to try to explain but it hurt, believe me.  I am pretty tough and it was bringing tears to my eyes.  Because of this they ordered a dye study.  The dye study showed that my port catheter was blocked, by forcing dye and saline in my port, another painful experience.  At first they told me there was a hole and then that my lymphoma was pinching off the catheter, so....either way it was not functional.

The doctor spoke with me about what I wanted to do, as far as treatment.  He of course suggested beginning chemo again, and going with the regimen that he had spoke to me about before.  He also said that the port would need to come out, and he really wanted it to be replaced. 

So, last Friday, the 1st, I had a new port put in and the old one taken out.  I had some nice neighbors watch the girls for me and another one drive me and wait for me.  Thank you ladies very much!  The procedure took a little longer than expected, but turned out fine.  I am a little sore and stiff, but fine...as long as nothing touches my incision sites.  Of course with two little girls...let's just say I scream sometimes.

I have asked my doctor's office for a schedule of the chemo cycles, but the nurse said the doctor is no longer sure what cocktail he wants to start me on.  So...until then I am waiting.  My sweet neighbors have also volunteered to help with and watch the girls when I begin treatment.  I am extremely thankful for their help, especially since my husband is away for work for a few months.  Thank you again ladies!

So....that is it for now.  Thank you for your continued prayers and concern!  I will try to be better about updating.

Update

I kind of took a few months off the blog, but thought I would try to catch you up. 

Since my last post things have changed a little.  I have not been quite as strict with my diet as a was initially.  I am still trying to avoid the processed foods, sugar, gluten...but I am not eating as much raw veggies and I eat meat daily. I haven't been taking my supplements regularly either.  I also stopped eating the Budwig Protocol smoothie a little over a month ago.  It was just getting to the point where I was having a really hard time drinking it.  It's not that it was horrible, it just wasn't that good, and my body was starting to revolt and needed a change.  So, usually for breakfast I have a fried egg with sea salt and pepper, maybe a dash of Tabasco here and there.  Lunch for a long time was mainly a salad with raw sunflower seeds and avocado.  I finally gave up on dressing...because they just don't taste good without sweetener.  For dinner I would try to eat basically with the family, with maybe a few alterations.  For example, I might have organic meat while theirs is not, or I use gluten free pasta for my spaghetti and regular whole grain for them. 

I am not going to tell you that I haven't cheated...I have.  I ate some of the girls Halloween candy, I have had a few frozen pizzas, some Spam, and during Thanksgiving time...I ate rolls, pumpkin pie, green bean casserole...yum.  I have by no means been perfect at this, but I still feel that I am eating much better than before and am overall, more healthy. 

I am finally back in a healthy weight range after losing 20 pounds!!  Yay!  I always told my husband that I didn't want to change my diet to lose weight, but changing my diet definitely helped me lose weight.  Although I have been exercising as well, I really think all that weight came off due to my diet change.  I started exercising with a neighbor while my Mom was here, so she watched the girls.  After my Mom left, it was harder to go work out with the neighbor because our kid's were just not cooperating with us. (Sorry Neighbor!)  Since my husband was now home, he and I started going to the gym 3x a week.  This other gym is just easier to take your kids to because they are just behind a half wall.  You can see them; they can see you; you can talk to each other without having to stop the workout.  Anyway, I got up to running/jogging a 12 minute mile.  I was trying to add on to it but we haven't been in awhile.  I hope we can get back in there soon.

My hair is growing back in, and it is growing in curly.  For a few months I was using the clippers to keep my hair short because I thought that I was going to be losing it again and didn't want the girls, or me, to get excited about the hair, just to watch it fall out again.  Then I thought I might as well just let it grow.  I have been letting it grow since, I believe, mid to late August, and it is about 2 inches long.  I just got my first haircut, which was really just a shape up to help it look more even and lay nicer.  I still can't believe it is curly...it is kind of funny.

I am finally scheduled to get another PET scan, so I would really appreciate a few extra prayers.  My PET scan is on the morning of Monday, the 10th.  I, of course, won't get the results until later that week.

While I pray for, and still would like you all to pray for, complete healing; I just want you to pray that God's will be done.  I would love for Him to show His power and awesomeness through ridding me of my cancer!  I would love to tell people that only God saved me from this cancer!  But I guess I should already be shouting and telling people how God has already saved me...and I am not very good at that.  GOD SAVED ME!!!  He sent His precious son, Jesus, to die on the cross for MY SINS!  Because of this great gift, I have eternal life.  He has already saved my eternal life, and that is all that really matters. I only pray that He will allow me to continue this life to be a better witness for Him, and a witness to my daughters...to my friends and family, who don't know Jesus.  What kind of friend am I really, if I don't share the Truth!

My New Diet

My flax seed oil came in Thursday, the23rd, and since then I have been having my smoothie, based on the Budwig Protocol, for breakfast. 

This is how I make it:  2/3 cup organic cottage cheese; 6 Tbsp. flax seed oil--Blend this together with my immersion blender and let set 5 min.  Then I add some berries and water; blend and drink.

This is really filling, so I don't really eat lunch, just a snack in the afternoon, dinner, and sometimes a snack before bed.  The cottage cheese is the only dairy in my diet and according to my reading it loses its dairy properties when combined with the oil.  Dr. Budwig used this, along with other things, to treat cancer patients for years. 

The rest of my diet is mostly raw fruits, vegetables, and nuts.  I have tried different things like;

I tried making a green smoothie with kale and other veggies one of the first days.  My smoothie maker didn't blend it very well...and it was disgusting.  Thick and ...uchk!!  It made me gag...I drank it...but gagging.  Later I read somewhere about making sure you don't use the stalks of the kale, so maybe that was why but...not going to do that one again.

I have juiced different things for a snack or just to drink.  Carrot/Apple juice is really good.  I even juiced kale, cucumber, and carrot and it was OK.  But yesterday...mmmm!...I juiced oranges and added a little almond milk....it was delicious! Juicing the oranges makes the juice all frothy! Yummy!

I have also tried out a few raw vegan recipes so I don't have to eat salad every night.  I made these cabbage rolls that were good and I will definitely have again.  I also tried raw spaghetti (zucchini instead of noodles) that was OK.  But I have definitely had a lot of salads.  And I don't like raw collard greens...it is like trying to eat a houseplant!  I have tried a couple of dressing recipes...but I don't really care for either of them.  I need to find a good fake Ranch recipe.

I have also had some cooked meals.  I had beans, cooked spinach, and last night I made some stew with lentils and cabbage. 

I also just snack on nuts, veggies, or fruit whenever I am hungry.  Last night I ate half an avocado.

I am looking forward to trying some new recipes for both my cooked and raw meals.

I am losing weight and really feeling much better.  I don't have the upset stomach problems that I had with my old diet and my back pain, which was causing me quite a bit of pain two weeks ago, is almost non-existent.  (The doctor thought back pain was caused by cancer near my back.)

Thank you for your continued support and prayers!  God is awesome!

Formulating a New Plan

After the recent disappointment of the cancer still not responding to treatment...I am thinking "what gives? What do I need to be doing differently?"  I actually even asked my LA doctor, "Do I need to do something different? Change my diet; eating habits?"  She said no, but....I mean the chemo isn't working...it's not like a change could hurt right?  A friend mentioned looking into the Paleo diet, and while I was I saw this link to the 31-day Home Cancer Cure.  Well, I downloaded the book, can't hurt to just see what it says.  When I updated my FB status and said I downloaded this book, suddenly other friends felt free to share their ideas with me.  I was pointed to the Gerson therapy, the Primal Blueprint, eating for your blood type, and balancing your pH.  So, after a lot of reading... 

I have decided....you all are going to think I'm crazy....I am not going to do chemo at this time.  I want to give my body a chance to breathe and to fight!  Really fight; not lay tired and confused from the effects of chemo and a lifestyle of eating that wasn't helping; fight!

I will get more in-depth later, but for now here is a little bit of what I will be doing:

- Budwig Protocol-  mixture of cottage cheese and flax seed oil

- Taking supplements

- Exercising at least 30 min a day ("they" recommend rebounding)

- Changing my diet; No sugar, processed food, dairy(besides the cottage cheese in Budwig), or gluten.  I will basically be a vegan, at least for a few months.  I will be aiming to eat about 80% raw, 20% cooked.  I will be staying away also from meat and eggs at this time unless I am low on energy then I will add them for about 3 times a week and only good fish.

Other random things I am going to do/try:
- Testing my pH
- Deodorant without aluminum
- Toothpaste without fluoride

Well, that is about it I think.  I know that this seems really weird...we have been taught that our doctors know best and that if you have cancer you get chemo and/or radiation.  What if all you need is natural? I just really feel like this is the way God is leading me.  I really felt like He didn't want me to do that last treatment, but I was unsure, so I did it...and the cancer kept growing.

I know that some of you probably think I am crazy, but please continue your prayers. Thank you!

Results of 8/9 scan

I wish I had good news to share with you...but I don't.  The cancer is still unresponsive to treatment, and still seems to be growing.  The doctor called me yesterday afternoon and let me know the results and her suggested next plan of action.  She suggested COAP, which is a combination therapy of cyclophosphamide, vincristine, arabinosylcytosine, and prednisone.  She said she had already discussed it with my local oncologist.  I am going to try to talk to him today to find out a little more information and see when he is planning on beginning treatment because I have an appointment with him on Thursday and want to know more before beginning.

If you pray...please continue your prayers for my family and I.  They are very much appreciated.

Upcoming PET scan

Please pray for me and my upcoming PET scan.  I fly to LA for the scan early Thursday morning (August 9th).  I will get to go over the results with my doctor that afternoon.

I am feeling really anxious and to be honest, a little emotional.  I know that it is in God's hands either way, but it is hard to not have anxiety over it.

So please pray for me....for healing and to not be anxious. 

Adcetris #2

I received my second dose of Adcetris on the 17th. (of July)  The only side effects that I had noticed after my first dose was some numbness in my big toe. I'm not sure if this is a side effect yet...I guess I will soon if it happens again, but... at the beginning of July my eyebrows looked different.  I'm not sure if they were just thinner or if the hair just lightened.  I thought they had thinned but my Mom thought it looked like they were just lighter.  The next week they were darker or thicker...so I'm not really sure.  My hair seems to be coming back though so I don't think the Adcetris is causing hair loss for me.  However, my hair looks really light.  It seems to be getting a little darker or thicker....again I'm not really sure.  But let's just say right now I'm probably a blonde. Last night was the first time that I went in public without a head covering; we met my brother and his family for dinner.  I think my hair is kind of at the stage where people might think that I just decided to cut my hair this way...

I have and PET scan and follow-up appointment in UCLA on August 9.  If the scan shows response to treatment they could either continue the adcetris to get more of a response or hopefully get a good enough response to finally begin the high dose chemo and transplant.

Doctor's Appointment

I had an appointment with my LV oncologist today.  He spent quite a bit of time talking to me, explaining things, and trying to answer my questions.  He also went over my PET scan results from the 14th.  He didn't have the images, which I really wanted to see, but he tried to explain the written findings.

Questions and paraphrased answers

Are we sure that we are treating the right cancer?
We trust the findings of the pathologist.  They are the ones that determine the biopsy results.  All of the chemos that you have had this time Gemzar/Navelbine and the ICE treat a wide variety of cancers.  We have basically been dropping bombs on you...the new treatment (Adcetris) is more targeted.

Why haven't the chemos been working?  Why does my lymphoma look different this time? (Not sure if he exactly answered my second question but the answers related to each other.)
I can't tell you for sure why they aren't working.  But a few cells probably survived the ABVD from your first time with cancer.  Because they survived this effective chemo...they became stronger.  When they came out of lying around dormant they starting growing the new lymphoma.  It is stronger and more resistant to treatment.


What about treatment?
Brentuximab (Adcetris) was recently approved...I think just last year.  I haven't had to give it to any of my patients because they have had results with their chemo and Hodgkin's isn't that common....and usually ABVD works for people the first time.  It is a drug of the future.  It targets the cancer cells specifically.  The antibody that is attracted and attaches to the cancer cell is bonded with a chemo so the chemo goes right into the face of the cancer instead of floating around your whole body killing cancer cells along with good cells.  When a new drug comes out it starts out being used for people with few other options and gradually gets used earlier and earlier in treatment.  I had to talk with the head of your insurance because they weren't going to approve it...it was only supposed to be approved if you had failed remission after the stem cell transplant.  I told the guy that he had a chance to make a difference in your life and he approved it.  The goal is to get the cancer to respond to the treatment and then still send you on for the high dose chemo and transplant.  We are going to give you two treatments and then send you back for another scan.

What about the side effects? PML?
The side effects are like most chemos...lower blood counts, nausea, tiredness, numbness in the hands or feet.  There is nothing we can do for you to prevent or prepare for PML but it is a very rare side effect.   And if it happens it would mean I'm dead.  Well I wouldn't have said it quite like that.  I'm not sure if there is a treatment for PML.

What about my port?  If I'm not able to use it...I want it taken out.
I think that we can use it.  I would like to have them access it today for your treatment if you are ok with it.  Since your arm is no longer swollen it wouldn't appear that you still have a clot.  I think that we should use it.  Sometimes cancer patients blood gets thicker and is more likely to clot.  We are going to keep you on the Lovenox shots rather than Coumadin because it is easier to regulate for someone like you...going through treatment ...and if your counts get low and you need to stop it...you can stop it immediately whereas Coumadin is still in your system for a few days.

The PET results
"new enlarged gastrohepatic, left paraortic and aortocaval lymph nodes, as well as mild uptake in a new left sub pectoralis node, as detailed above, suggestive of progression of malignant disease."  This is all new growth since the PET scan from April 24th.


After speaking with the doctor I decided to go ahead with the treatment they had planned for me to have.  They accessed my port fine and I received my premeds (anti-nausea and Benadryl) and my first dose of Adcetris.  The whole infusion with premeds and Adcetris took about an hour...not very long at all.  I am scheduled for my second treatment on July 17th.

Adcetris® Lawsuit

This is a link to a lawsuit against Adcetris, the drug that the UCLA doctor recommended to be the next treatment.  Although there have only been these three reported PML cases...I guess it may not be common, but PML sounds horrific.  These are the things that patients have to deal with...what are the risks and side effects?  Is it going to be worth it in the long run?  Am I going to live...or is the treatment or the disease going to kill me?
Adcetris® PML Brain Infection Lawyer & Lawsuit | The Senators (Ret.) Firm, LLP