Throughout this month I've been holding my breath thinking "This will pass... it will pass." From before the holidays with the shingles, to a recent boiley-chest rash with absolutely zero cause or reasoning to my most recent set-back at New York Presbyterian for six days. I'm still waiting for it to pass.
I also attempt to set small goals for myself every month: cooking a new meal, buying something new/decorating the apartment, applying for jobs, going to the gym 4-5 times a week, attempting to find anew yoga studio. It didn't feel like there was that much on my plate that month. But my body was telling me otherwise.
Revlimid has been a g-dsend with it's nightly dosing (i just pop one pill a night!), zero infusions, and hardly any side effects except my immune system going bizerk. Literally. It's turning things on that it never has had on before, and luckily turning off DNA switches (the cancer) as well. But in the interim, it's messing with me. Completely. And I am one frustrated pup.
Only two weeks ago I started having a head cold that somehow broke into a staff infection, bacteria infection, and another case of scalp shingles. Even I didn't want to be around myself. My counts aren't bad but they aren't normal. The only reasoning I am given when asking why I've had three separate skin-rash-breakouts within six weeks is, "The Revlimid is changing your immune system." Do I want this? Of course, but do I want to be isolated for weeks at a time - HELL NO. Cancer sucks, no matter what way you look at it. But I get really heated when I'm a)not allowed to venture outside my apartment b)not allowed to work out or go to yoga and C) not allowed to eat the things I crave.
For the third time in six weeks -- I'm back at this place. Being bedridden and isolated for six days is my worst nightmare, mostly because I become immobile, and I lose everything I work for everyday to keep my body healthy. My muscle mass, my balance, my eating habits. I lost five pounds in the hospital, and now am huffing and puffing just walking around the apartment. So, I am absolutely livid. The I am Bekah Hear ME ROAR... kind of livid.
Luckily, the infections are healing and the shingles have started going away -- but a part of me is waiting for the other shoe to drop. Because, it keeps on happening this month... We meet back with O and his team next week to discuss if and how we can prevent ANY of this from happening. The fact that I've never had shingles in my life, and now I've had it twice within a month is a big frightening. The fact that my face swelled up like a balloon and I was in so much pain, I literally thought the swelling was going to break my nose is even scarier.
I haven't truly been angry at this disease in a while, and sometimes its not worth the energy -- but in this instance its everything I need to start figuring out how to live with this drug, still get the things I need and use the anger as motivation to put the rest of this stuff in check. I'll take all of it, and once again for the 35285437954 time use it when I go into physical therapy to gain strength back in my legs and find balance in my ankles and hopefully return to the gym, and eventually go back to some of those monthly goals. Each set back is traumatic, especially this one. I've spent two days crying, now it's time to get back to work.
I hate being angry, but if it's there, I'll use it...
- b.
Wednesday, January 30, 2013
Wednesday, January 2, 2013
let's go, twenty thirteen.
Since November, I celebrated and survived packing, moving, unpacking, holidays in a new city, a case of face-shingles, a trip to New England, celebrating a good college friend's wedding, new years, and prepping for my first interview.
Here's to remembering and honoring those that we lost in twenty twelve,
and celebrating life to fullest in their memory, during twenty thirteen.
love,
b!
The year is starting off with a huge and exciting bang, and an ESR/SED rate of SIX. Normalcy is starting to set in again, and goodness it feels so good. Here's to lucky (twenty) thirteen with lots of health and happiness!
 |
The beginnings of our new home.. |
 |
My crazy shingles while packing up my old apartment.
It's NEVER dull being a cancer patient :)
For HLers: If you suspect any form of odd bumps/shingles, make sure to call your onc immediately.
Thankfully this cleared up within three weeks...
|
 |
Thankfully, I was able to put on a good face for the wedding
since it all cleared after some quick emergency doctor visits and meds!
|
New Year's Wedding!
 |
| One giggly, amazing couple |
 |
| College loves.. |
Here's to remembering and honoring those that we lost in twenty twelve,
and celebrating life to fullest in their memory, during twenty thirteen.
love,
b!
Friday, November 30, 2012
Here's to December
Here's to:
- Still kickin' as I reach my sixth year living with Hodgkin's Lymphoma. This December marks six years since my diagnosis.
- Moving to a new city.
- Recently receiving excellent news that Revlimid is working, and tumors are drastically shrinking.
- Starting a new chapter with my partner.
- Having a zero-scan/check-up December.
- Living.
Sending love to each and everyone of you,
Here's to another December.
xoxo,
b!
Wednesday, November 14, 2012
For those who relapsed after an Auto-SCT or are Refractory Hodgkin's Lymphoma Patients:
This post is for any individual who has relapsed after an auto-stem cell transplant or has refractory Hodgkin's Lymphoma. I have also attached it to the top tool bar of the blog so you are able to access it at any given time. I hope this helps.
-----
I am Refractory (ABVD, BEACOPP and other first line treatments are not working)/I Relapsed after Transplant: What Next?
It has been an absolute honor and incredible struggle to be part of the Hodgkin's Refractory Community. The souls I have met and crossed paths with have changed my life dramatically; however, living with this disease on a daily basis is not the easiest of lifestyles.
Due to creating so many relationships with other Hodgkin's Lymphoma Patients, it has come to our (the HL commuinty) attention that there is not enough information or guidance when a Hodgkin's patient relapses after an auto-transplant. Since Hodgkin's disease is rare to begin with, and the cure rate is so high there are a small population of us who unfortunately do relapse. Therefore the next steps after an auto-transplant are crucial to your body, your survival rate, and your mental health.
Most general oncologists, although they are very well educated may not be well-versed in relapsed/refractory HL due to it's rarity. In turn, they may or may not be aware of various options for their patient. When you relapse and you are under a general oncologist, he or she can only provide you treatment that your specific hospital provides. Therefore, your next steps are critical to receive the best treatment for your specific disease.
I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on how to make the best choices despite my circumstances. I felt it was only necessary to do the same for others...
I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on how to make the best choices despite my circumstances. I felt it was only necessary to do the same for others...
Steps to take if you are refractory and or you have relapsed after Transplant:
Be aware that you have many options. And options give us hope for the future. These next steps are difficult, but trust me, they are doable. There are many of us out in the HL community who live long lives being treated with clinical trials or receive an allo-transplant and are alive today.
Review where you are located, who is treating you, and ask yourself these questions
- Am I being treated by a lymphoma specialist?
- Has my oncologist treated relapsed Hodgkin's Lymphoma before? Has he/she treated MORE than five patients?
- Am I being treated at a major cancer facility?
- Can my oncologist offer me other options besides an allo-transplant?
- Have you sent you files elsewhere and received a second opinion?
Go see the top specialists for Refractory HL in the country. This is in your best interest if you have relapsed after an auto-transplant to distinguish a short and long term plan. Call and consult with Dr. Anas Younes or Dr. Owen O'connor. They are both able to offer multiple options of clinical trials and discuss different transplant options, as well as their medical opinion of which track you should choose determined by your individuals disease. Be your own advocate, your cancer is serious but with tailored treatment you can be okay. This means, even if you can not manage a flight for a consult, email Dr. Younes or Dr. O'connor. When you email them include: Name, Location, Treatment History (hospital locations and oncologists you were treated by). Be short and to the point, but pack it with as much helpful information for these professionals to help you.
Memorial Sloan Kettering Cancer Center
New York, NY
New Patients Phone#: 646-497-9137
General Phone#: 212-639-7715
Be aware that the next FDA approved drug used for Refractory HL is SGN-35 also known as Adcetris. And there are other options... Most major cancer facilities and lymphoma specialists should have this form of treatment. There are many individuals who have reached remissions with this treatment, or utililized it to bridge them to an allo-transplant, or received this drug for managed treatment. Either way, it is a successful drug and it should be on your radar if you have relapsed or are refractory.
*Click Here to view a current list of open Refractory HL clinical trials. For you to do more searches, keep in mind what phase these treatments are on. Phase I, II, or III. (The higher the phase, provides a higher form of research).
- EBV+ Clinical Trial: Ask your oncologist to test your tumor block for EBV+ tumors/Epstein Barr Virus positive tumors (not your blood, your actual tumor block). You can do this by calling pathology yourself and requesting the test. If you have an EBV+ tumor, you might want to consider before all else a non-toxic clinical trial first. Read more on that trial here oh and here.
- Revlimid: Many Refractory HLers are seeing positive results from this drug, normally used for Myeloma patients
- SGN-35 + Bendamustine: Combination used in several clinical trials that are happening in the U.S. (Go to www.clinicaltrials.gov and use the search engine by putting in "Refractory Hodgkin's Lymphoma)
It is a very personal decision, and only you know what will be best for you. Please remember everyone's Refractory HL disease is different some of us have more aggressive HL, others are chemo-sensitive but very refractory (disease responds but continues to come back after treatment), and others disease never goes away but is not very aggressive. Due to YOUR individual disease, a lymphoma specialist, especially the two above will be the best doctors to determine what route: clinical trial vs allo-transplant you should be treated with.
- I encourage you to read some of the following on this topic.
- Written by Alison, mother of Adrienne: Cure vs. Management
- Research clinical trials around the country/world for Refractory HL at: clinical trials.
- Visit other educated Refractory Lymphoma patients on the Refractory Facebook Group and Hodgkin's Forum.
- If thinking about an allo-transplant research articles such as this one, oh and this one.
Ask Hard questions. This is your life. Ask those hard questions, even if it is difficult to hear. You are putting your life in your specialists hands. When you are faced with an allo-transplant or a clinical trial. Remember to ask your specialist the following:
- For those facing an allo:
- How many relapsed/refractory Hodkgin's Lymphoma patients have you treated?
- How many of those patients have achieved a remission? A five year remission?
- Discuss GvHD: How do you treat it? How many of your patients experienced Grade 3 or 4 GvHD?
- What is the percentage or mortality or survival rate of those treated with allo-transplant?
- How many patients have reached a remission and have low to little GvHD that you have treated?
- Discuss side effects, ALL of them. Even those that are 'rare.'
- Will this prevent/exclude me from receiving other treatments?
- When faced with a clinical trial:
- What phase trial is this? (one through four, four being the safest).
- How many relapsed refractory HLers have enrolled in this trial?
- How many of those HLers responded? Partial Remission? Complete Remission?
- What are the side effects? How will we manage these side effects?
- What is the mortality or survival rate?
- Will this prevent/exclude me from receiving other treatments?
- Visit Corporate Angels, they will fly you for free.
- Stay at Hope Lodge, a free facility for Cancer Patients in New York City.
- Reach out to your Leukemia and Lymphoma Chapter for financial support.
Above all, remember that with options there is hope, and there are many, many options for all of us.
Sending love and tons of light to you,
B.
Tuesday, November 13, 2012
Two thumbs up for Revlimid
Yesterday we received scan results after being treated with Revlimid for two months...
With two thumbs up from Dr. O'connor and my wonderful partner, we were all excited to hear that the Revlimid is not only working, but it is working quickly, and very well against my tumors. All of my nodes have decreased significant amounts. None of them are 'stable' or have 'mixed' results. For the first time in a while, everything is decreasing from starting with 3-4 cm nodes before treatment, to now only having nodes between .5 and 1.8 cms. And for those taking note, my SED rate is down to 15 (hot damn, it's in normal healthy range). We are absolutely thrilled. And although there has been a lot of loss lately in the HL community and on the east coast, we take this small kernel of good news and are running with it...
Revlimid is suppose to be a slow-acting drug on 20mgs. So all of us were a bit surprised that there was such a dramatic decrease since I was treated with 10mgs over a period of two months. Thankfully, almost all of my side effects have subsided and I am now tolerating the drug much better, except for some neuropathy and fatigue. Due to these factors, O'connor believes this will be a very positive drug for my future.
After the last six months, it finally feels like we are leaving behind the roller coaster of unknowns and are approaching stability and some form of normalcy again. It hasn't quite sunk in yet, but we will take it.
Here's to being on the other side of things!
Sending so much love to all of you,
B.
Monday, October 1, 2012
Hello October!
October brings crisp fall days, boots, pumpkin spice lattes, big sweaters, apple picking, hay rides, and thoughts of Adrienne..
This morning started off with thinking about one of the toughest, bravest warriors and her mother, Adrienne and Alison. Adrienne survived with HL for over thirteen years, and is probably one of the primary reasons why I, and so many other warriors are alive today. She showed us it was possible to live with this disease as a chronic illness and still achieve your life goals. Today marks three years since Adrienne's passing, and her presence continues to impact my life and my ability to continue this lifestyle -- just as she did. So, today we remember Adrienne and also send love to her entire family, especially her mother Alison, who has shares/d invaluable experiences and information to help other cancer patients in this journey. Today, we remember Adrienne.
Without Adrienne and Alison, I wouldn't have met with Dr. O'connor today -- the man and my oncology team that has kept me alive for almost six years with this illness. It felt almost fitting that Dr. O, Ellen, and I of all days, were within the same four walls.
This meeting/check-up consisted of discussing these rare and intense side effects that have mostly subsided since decreasing my dose of Revlimid from 20mgs to 10mgs. At this point on the 10mgs I am left with the following:
Revlimid side effect (10mgs)s:
can cause intense pain where the tumors are located. If this is a correct diagnosis than the pain
will decrease over time as the tumor cells begin to die off, since there will not be a large disease
burden.
This morning started off with thinking about one of the toughest, bravest warriors and her mother, Adrienne and Alison. Adrienne survived with HL for over thirteen years, and is probably one of the primary reasons why I, and so many other warriors are alive today. She showed us it was possible to live with this disease as a chronic illness and still achieve your life goals. Today marks three years since Adrienne's passing, and her presence continues to impact my life and my ability to continue this lifestyle -- just as she did. So, today we remember Adrienne and also send love to her entire family, especially her mother Alison, who has shares/d invaluable experiences and information to help other cancer patients in this journey. Today, we remember Adrienne.
Without Adrienne and Alison, I wouldn't have met with Dr. O'connor today -- the man and my oncology team that has kept me alive for almost six years with this illness. It felt almost fitting that Dr. O, Ellen, and I of all days, were within the same four walls.
This meeting/check-up consisted of discussing these rare and intense side effects that have mostly subsided since decreasing my dose of Revlimid from 20mgs to 10mgs. At this point on the 10mgs I am left with the following:
Revlimid side effect (10mgs)s:
- Neuropathy. We are treating this with Cymbalta. At this point I am completely numb in my toes, the padding of my feet, as well as the tips of my fingers. In addition to Cymbalta I will also be researching Acupressurists in the Bucks County area.
- Pain levels. My body-pain/aches have definitely decreased. Instead of being at a seven on a one through ten scale, I'm now around a three. Unfortunately still in pain, but better than before. Taking IBprofin everyday is taking the edge away. In addition, I have shooting pain about 5-6 hours after taking a dose of Revlimid within my upper chest (the reason for my hospitalization last week when we thought it was a blood clot), and when I take a very deep breath.
can cause intense pain where the tumors are located. If this is a correct diagnosis than the pain
will decrease over time as the tumor cells begin to die off, since there will not be a large disease
burden.
- Hair thinning, I'm losing very few strands a day, but still when I wash my hair, I am losing hair. Mentally this is never a positive thing for someone who's lost their hair several times, but I'm trying not to focus on it at the moment.
My team and I have decided I will continue on the 10 mgs of Revlimid indefinitely if I can tolerate the pain and neuropathy or they subside over time. In addition, I scheduled a port surgery to replace my old portacatch with a new power portacath so my tender arms never have to be touched again for imaging/scans! Although it's never fun to get surgery, I am super excited to not have to endure anymore needle sticks, hours of waiting for a nurse to access a viable vein, or the bruising that comes from missing my veins time after time.
This new port, we will be able to use for all of my scans, blood work, and anything else that needs a vein access. Some twenty-eight year olds get a new car and are excited, I'm off to receive a new port-a-cath, and I seriously can't wait. Other positive news to relay is that I am back up to 122 pounds. I thank everyone who sent over or dropped off food as it obviously stuck, and I am almost back to my normal weight, all good things!
Lastly, if you would like to financially help in anyway, you live in the Bucks County/Philadelphia area and you would like to book a family, engagement or budoir professional photo shoot, my good and dear friend, Ms. Jillian Bauer, is running a special now through December 31st. Please check her out as part of the proceeds are a contribution towards my medical/treatment costs. Please click here for more details.
Here's to October, the crispness of fall, and Adrienne.
Sending Love,
B!
Wednesday, September 26, 2012
Adjusting to Revlimid
After a whole week on 10 mgs of Revlimid starting on the 11th of this month, I was sure we would be coasting on this treatment. On the 15th, my oncology team pushed the drug dosage up to 20 mgs, and things were good for a few days...I even had enough energy to do yoga, and two physical therapy sessions and to top it off a trip to the beach.
Unfortunately, on Saturday morning I woke up with shooting pain in my chest, extending into my neck, back and throughout my left arm. To add to it, I was having a ridiculously hard time breathing in deep -- and when I did, there was a substantial amount of pain. Being a cancer patient, we have a higher risk of throwing a blood clot, and these symptoms did not feel good, at all. So off I went to the ER, and was admitted to the hospital to run tests, a VQ and a CT, which luckily resulted in positive results, my lungs were clear and there were no clots to be seen.
The ER and hospital visit took three times as long as it should of, and many arm sticks, due to not being able to access a vein, at the end of this visit my family, my partner and I all decided it is time for a new port. The new ports you can access and use for CT's, mine at this point you cannot, and my veins in my arms have taken quite a beating over the last six years. If you saw me today, and didn't know I was a cancer patient, I'd swear you'd think I was using heroin. It's not a good look. We are hoping to schedule surgery once this treatment becomes more stable.
The muscular pain around my chest continued, the painful deep breathing continues, and after being released, new side effects/symptoms started to arise. So far these have been side effects I've experienced on the 20 mgs of Revlimid:
Last night it was decided that I would decrease the drug back down to 10 mgs in hopes that some of these side effects lessen. This morning I'm grateful that my hands are no longer cramping and locking anymore; however my neuropathy is consistent in my toes, and my calves continue to spasm and cramp anytime I'm not moving.
Unfortunately, on Saturday morning I woke up with shooting pain in my chest, extending into my neck, back and throughout my left arm. To add to it, I was having a ridiculously hard time breathing in deep -- and when I did, there was a substantial amount of pain. Being a cancer patient, we have a higher risk of throwing a blood clot, and these symptoms did not feel good, at all. So off I went to the ER, and was admitted to the hospital to run tests, a VQ and a CT, which luckily resulted in positive results, my lungs were clear and there were no clots to be seen.
The ER and hospital visit took three times as long as it should of, and many arm sticks, due to not being able to access a vein, at the end of this visit my family, my partner and I all decided it is time for a new port. The new ports you can access and use for CT's, mine at this point you cannot, and my veins in my arms have taken quite a beating over the last six years. If you saw me today, and didn't know I was a cancer patient, I'd swear you'd think I was using heroin. It's not a good look. We are hoping to schedule surgery once this treatment becomes more stable.
The muscular pain around my chest continued, the painful deep breathing continues, and after being released, new side effects/symptoms started to arise. So far these have been side effects I've experienced on the 20 mgs of Revlimid:
My side effects of Revlimid:
- Mouth Sores
- GI issues
- Muscular cramps/spasms (primarily in feet, legs, hands)
- Fingers/Jaw locking
- Neuropathy
- Due to jaw spasms and locking, slurring of some words
- Thinning of Hair
- Dry Mouth
- Back Pain
- Feet/Legs falling asleep within minutes
- Full body tension/pain/aching after sitting for more than an hour, and just to note I am usually incredibly pain tolerant but my muscles are so incredibly tender, that just a soft touch sends my body into a level of pain I haven't experienced since SGN
After two days in the hospital, and these symptoms on top of it, especially the joints locking and spasming/cramping which is a side effect of Revlimid that some patients do get, I have spent the last two days in bed battling my muscles. And I am one tired pup, that still has one more week of these drugs to finish up before the end of my cycle. Although mentally I know this will be the roughest part of the treatment, figuring out all the kinks and letting my body adjust, I am feeling a bit drained and exhausted.
Last night it was decided that I would decrease the drug back down to 10 mgs in hopes that some of these side effects lessen. This morning I'm grateful that my hands are no longer cramping and locking anymore; however my neuropathy is consistent in my toes, and my calves continue to spasm and cramp anytime I'm not moving.
I am, with everything I have trying to be patient. It has been a long time since I've been on a real drug, and a part of me almost forgot what it was like. This will take some time and adjustments with medications. I'm hoping staying on the lower dose will be more of a relief -- time will tell.
Here's to the lower dose being the key to a hopefully, very boring week,
and of course, a sweet New Year.
and of course, a sweet New Year.
Sending Love and Light,
B.
Saturday, September 15, 2012
Can we be grateful and upset? Yes and yes.
If you would like to continue to read this blog once it is set to private in October, please click here and follow directions:
----
One of the most difficult pieces of this disease is how everything can be ripped away in an instant. Health for a twenty-eight year old woman in this body is never taken for granted, and every moment that I feel well I hope to goodness I utilize and soak up as much as possible. Everyday, every moment.
So when a set-back happens after fourteen months of wonderful health (which I never want to seem as though I'm complaining or kevetching because I am so grateful). To put it bluntly, I get pissed. I get upset. I get so frustrated. In most scenarios I look to the silver lining, I can find something beautiful in this amount of pain or look what I achieved in this amount of time... But, I've slowly (it's only taken six years right?) come to the realization that I can be grateful and still be upset. Being upset or angry does not take away or negate how fortunate I feel.
I am so, so incredibly blessed not only with my support system, my resources, my education, my family, my intake of food and ability to access and afford physical support networks (gym, yoga studio). I have the most amazing family one could ask for that continue to tell me to slow down, there is no rush, be where you are not where you think you should be.
But, but, but... when all of this started in June/July I had no idea the amount of time I would be in pain, discomfort, and immobile. I did not see this one coming -- and I usually do. I struggle with thoughts of how angry or down am I allowed to get before I seem ungrateful or not appreciative of what I have? So many other warriors are fighting harder battles, so many are no longer here. A part of me fights with my inner soul about all of this. Do I have a right as a six year veteran of cancer (who is living a semi-normal life) to be livid, grieve, and mourn the last three months? Do I have a right after I worked extremely hard at school looking forward to a full-time job to kevetch that I may only be able to get a part-time job, and that is probably after two more months of recovery? Do I have that right? And does that take away from understanding that I still appreciate my time here -- no matter the pain or discomfort.
These last three months, I really questioned myself. Where should I be at twenty-eight? Where should any of us be? Why is that the question though, why are we setting ourselves up for another failure. When I asked myself where I should be, I really should be focusing on where I am. Today, I can get up. Today, I can do some yoga. Today, I get to see good friends. Will I get to tomorrow? eventually. But, today is today.
For all the ups and downs that have surfaced this summer I do have to say my friends are some of the outstanding, beautiful, just down right amazing people in the world. I surround myself with people who lift me higher and along with my family, and my partner, I still say I would not be here without my pockets of friends throughout the east coast. This weekend I had the pleasure of sitting down with one of them, an amazing young man who has his entire life in front of him and we discussed some of these issues. Society, social media, Facebook -- the pressures of our culture. What is next? where do we go from here? What age do we need to be getting married and having kids without feeling like a failure? Goodness the normal pressures of a twenty-something year old are sometimes too much to bare. A part of me grieves for my own generation as well, at least I have a physical illness that puts some of these things into perspective. (Again, here I need to be grateful, because this is what I do, I am still working on it).
I've realized more and more that people should get to feel how they want to feel. So, why can't I? I feel the same pressures (at times) from our society, but mine is more focused on where I personally thought or think I should be professionally. It's definitely not the same dynamic as a healthy twenty or thirty something year old, but this voice whispers in my ear from time to time. And this is where I found myself this summer.
Thinking:
- I need a full time job
- I need to get myself physically 100 percent in 2 weeks
- I need to move immediately now that I've completed my degree
- I need to be superwoman. I need to force my feelings and my thoughts in a direction that aren't there yet.
And truth be told, I wasn't. I am still 'working' on being here -- and not where I should be. I took the time I needed, and still need to be heartbroken. Here I was, jumping through another hoop, another setback, another few months of being sick and immobile. And in my world, when I physically can't move, emotionally I feel backed up and immobile as well. It's a horrible cycle, and eventually I come out of it stronger (like most of us) I bounce... eventually.
But this time, maybe because it took so long for this diagnosis to happen and we all struggled with what was really going on and the horrible unknown -- maybe, just maybe, I needed more time than I was willing to give myself. Truthfully, I, and the rest of the cancer world never ever gives themselves enough time. Somehow most of us out there have this mentality that we need to get through this fight right this second, we need to focus and be 'strong.' That is the cancer culture, and if we aren't... some of us look inwards and see a failure. An unfortunate attribute to this disease, especially when you don't feel it.
After months of refection and time it always seems to come back around to one major concept. Be where you are. Feel how you want. Can I be absolutely, incredibly grateful for the life that I have while others are struggling? Absolutely. It's definitely not the most pleasant feeling in the world, but I know when I am struggling and others are not, I am still very, very pleased and happy for those individuals. My anger I've realized, or sadness at some times, does not take away from anyone else's pleasure. And, it does not take away from mine.
I am not one single emotion or dimension, I am dynamic, I have depth, we all do. So allowing this anger and frustration to surface, be dealt with, reflected upon, and felt I've realized can only help me. I get to be where I need to be that day, pissed off at the world, or overwhelmed with the beauty of my life. And I get to struggle and still feel loved, appreciated, and one of the luckiest woman in the world. I get to feel however I want to feel -- It's just nice that I've started allowing myself to do it.
Here's to being where you are, today.
Sending Love and Light,
B.
---
Cancer news: Started Revlimid at 10mgs this week and bumped it up to 20mgs today, no side effects to speak of just yet. I've once again finished off another set of steroids -- so now we wait to see if the fevers return, or the Revlimid will force the disease back enough so I can continue to feel physically well.
----
One of the most difficult pieces of this disease is how everything can be ripped away in an instant. Health for a twenty-eight year old woman in this body is never taken for granted, and every moment that I feel well I hope to goodness I utilize and soak up as much as possible. Everyday, every moment.
So when a set-back happens after fourteen months of wonderful health (which I never want to seem as though I'm complaining or kevetching because I am so grateful). To put it bluntly, I get pissed. I get upset. I get so frustrated. In most scenarios I look to the silver lining, I can find something beautiful in this amount of pain or look what I achieved in this amount of time... But, I've slowly (it's only taken six years right?) come to the realization that I can be grateful and still be upset. Being upset or angry does not take away or negate how fortunate I feel.
I am so, so incredibly blessed not only with my support system, my resources, my education, my family, my intake of food and ability to access and afford physical support networks (gym, yoga studio). I have the most amazing family one could ask for that continue to tell me to slow down, there is no rush, be where you are not where you think you should be.
But, but, but... when all of this started in June/July I had no idea the amount of time I would be in pain, discomfort, and immobile. I did not see this one coming -- and I usually do. I struggle with thoughts of how angry or down am I allowed to get before I seem ungrateful or not appreciative of what I have? So many other warriors are fighting harder battles, so many are no longer here. A part of me fights with my inner soul about all of this. Do I have a right as a six year veteran of cancer (who is living a semi-normal life) to be livid, grieve, and mourn the last three months? Do I have a right after I worked extremely hard at school looking forward to a full-time job to kevetch that I may only be able to get a part-time job, and that is probably after two more months of recovery? Do I have that right? And does that take away from understanding that I still appreciate my time here -- no matter the pain or discomfort.
These last three months, I really questioned myself. Where should I be at twenty-eight? Where should any of us be? Why is that the question though, why are we setting ourselves up for another failure. When I asked myself where I should be, I really should be focusing on where I am. Today, I can get up. Today, I can do some yoga. Today, I get to see good friends. Will I get to tomorrow? eventually. But, today is today.
For all the ups and downs that have surfaced this summer I do have to say my friends are some of the outstanding, beautiful, just down right amazing people in the world. I surround myself with people who lift me higher and along with my family, and my partner, I still say I would not be here without my pockets of friends throughout the east coast. This weekend I had the pleasure of sitting down with one of them, an amazing young man who has his entire life in front of him and we discussed some of these issues. Society, social media, Facebook -- the pressures of our culture. What is next? where do we go from here? What age do we need to be getting married and having kids without feeling like a failure? Goodness the normal pressures of a twenty-something year old are sometimes too much to bare. A part of me grieves for my own generation as well, at least I have a physical illness that puts some of these things into perspective. (Again, here I need to be grateful, because this is what I do, I am still working on it).
I've realized more and more that people should get to feel how they want to feel. So, why can't I? I feel the same pressures (at times) from our society, but mine is more focused on where I personally thought or think I should be professionally. It's definitely not the same dynamic as a healthy twenty or thirty something year old, but this voice whispers in my ear from time to time. And this is where I found myself this summer.
Thinking:
- I need a full time job
- I need to get myself physically 100 percent in 2 weeks
- I need to move immediately now that I've completed my degree
- I need to be superwoman. I need to force my feelings and my thoughts in a direction that aren't there yet.
And truth be told, I wasn't. I am still 'working' on being here -- and not where I should be. I took the time I needed, and still need to be heartbroken. Here I was, jumping through another hoop, another setback, another few months of being sick and immobile. And in my world, when I physically can't move, emotionally I feel backed up and immobile as well. It's a horrible cycle, and eventually I come out of it stronger (like most of us) I bounce... eventually.
But this time, maybe because it took so long for this diagnosis to happen and we all struggled with what was really going on and the horrible unknown -- maybe, just maybe, I needed more time than I was willing to give myself. Truthfully, I, and the rest of the cancer world never ever gives themselves enough time. Somehow most of us out there have this mentality that we need to get through this fight right this second, we need to focus and be 'strong.' That is the cancer culture, and if we aren't... some of us look inwards and see a failure. An unfortunate attribute to this disease, especially when you don't feel it.
After months of refection and time it always seems to come back around to one major concept. Be where you are. Feel how you want. Can I be absolutely, incredibly grateful for the life that I have while others are struggling? Absolutely. It's definitely not the most pleasant feeling in the world, but I know when I am struggling and others are not, I am still very, very pleased and happy for those individuals. My anger I've realized, or sadness at some times, does not take away from anyone else's pleasure. And, it does not take away from mine.
I am not one single emotion or dimension, I am dynamic, I have depth, we all do. So allowing this anger and frustration to surface, be dealt with, reflected upon, and felt I've realized can only help me. I get to be where I need to be that day, pissed off at the world, or overwhelmed with the beauty of my life. And I get to struggle and still feel loved, appreciated, and one of the luckiest woman in the world. I get to feel however I want to feel -- It's just nice that I've started allowing myself to do it.
Here's to being where you are, today.
Sending Love and Light,
B.
---
Cancer news: Started Revlimid at 10mgs this week and bumped it up to 20mgs today, no side effects to speak of just yet. I've once again finished off another set of steroids -- so now we wait to see if the fevers return, or the Revlimid will force the disease back enough so I can continue to feel physically well.
Friday, August 31, 2012
Ebb and Flow...
As September awakens it will definitely be a huge transition month. However in some ways, that is the life of a cancer patient. Ebb and flow, push and pull -- finding the balance between the worlds we straddle. Before the latest news I was preparing/hoping for full time work, a move within the next few weeks, and tying up loose ends here in good old Doylestown, awaiting... some kind of movement into my professional life.
above all else, e.e. cummings reminds us:
life (who never grows old) is
always beautiful and that
nobody beautiful ever hurries
Sending Love and Light,
The goals are all still the same, but sometimes priorities have to be viewed differently and one must pause. So here I am, doing just that. Now that I am officially off the steroid load after four days of non-stop eating, and a hard, hard crash today. I begin focus on yoga, action, peace, nourishment/food as much as possible to rid my body of the immobility that surrounded it throughout the last two months. More than not though, I just wish my body would catch up with my mind -- here I am ready to be on the move, but a few other things need to transpire before I catapult my way into the future: whatever that may be.
Fortunately, my "B" symptoms of night sweats and fevers have subsided due to the steroids. And our hopes are obviously that they stay this way. It appears with paper work in check I will start the Revlimid, also known as Lenalidomide (new drug of choice) on September 10th. Most likely it will take 2-4 weeks for my body to regulate to see what I am capable of handling on a day to day routine and basis (work, exercise, side effects, ect). This is the 'patient' part of being a cancer patient where I'd like to push the fast forward button -- but we all can't be so lucky. It's where my practice in this world, literally takes the most patience out of me...
My hope is that with the opening of Fall, I will find a position that suits my body, my needs, and that this small oral pill will not even conflict with the daily life I planned out for myself since graduation. So here is hoping for new beginnings on September 10th... and a very, gentle, loving transition into Autumn.
A few quick notes as we close down summer:
- We are also taking food donations/drop and go meals throughout the next month to buff me up as I rebound, so please email me by clicking here if you're interested in contributing
- If you would like to continue to read this blog, once it is private in October, please click here.
- Lastly, a huge, huge thank you for all who contributed to our travels to Texas. Again, if it weren't for each of you, I definitely would not be continuing treatment, and venturing into the fall with such high hopes.
above all else, e.e. cummings reminds us:
life (who never grows old) is
always beautiful and that
nobody beautiful ever hurries
Sending Love and Light,
B.
Sunday, August 26, 2012
Dx: Cancer, Kidney Infection R/O: Everything else
PLEASE prepare for a long post, I've again promised a lot of updates to many people and want to supply as much information as possible so I don't have to continue to update through every phone call. It makes my job so much easier when people read these posts so I thank you from the bottom of my heart for reading, and if you want to just get to the meat and potatoes (results and plans) of the post jump to the bulleted portion. On another quick note, in about a month I will be making this blog private, if you would like to continue to read 'true beauty' please click here and read directions.
-----
First and foremost I would just like to thank you all once again for your unwavering support. I continue to realize each time there is a bump in the road I suddenly have this army of individuals cheering for me, sending me love and positive vibes, and just being there. It's an amazing, amazing feeling to not just be cared for by your inner circle of family and friends but by the HL community, and another entire extension of friends that I have met along my different paths... I become overwhelmed, and although I do not respond to each one of you I hope you all know that I hear you, I hear everything you write or say.
To also preface this post before some negative news, I would like to ensure everyone that although some of these new bumps in the road are not what we hoped for, it could not have come at a better time. I just completed my Master's degree in July. I ventured through a whole year of studies and internship and finally finished my degree. A degree where I've once again been blessed to be connected with a few amazing women who I know will call my life-long friends..
These symptoms occurred just as Rich and I were coming home from our amazing and life-changing vacation where I was in zero pain and able to push my body to some of my best physical capabilities... I am so thankful that my symptoms did not occur till the moment we started packing our bags for home. We were able to totally suck the marrow out of that trip like no other, and I am so, so grateful for NJCASA, Kim and Joel for making this trip possible for me and Rich. We would never have been able to experience such a trip without the generosity and kindness of incredible strangers and a beautiful organization such as NJCASA.
I'm also grateful that (some) things happen for a reason, that I haven't jumped into a position yet and now I have the time I need to have to recover from the last two months and prepare for what is to come before I start venturing into the working world. To have time to mentally recharge myself and renourish my mind and body before I take these next steps.
-------
So what are the next steps?
Here is a break down of what happened this week:
The Diagnosis: It was very obvious early in the summer I did have a Kidney infection with classic symptoms; however, with previously being on anti-bitotics for an UTI a culture would not be able to pick up on an infection. Therefore, we conclude that there was an infection somewhere in my kidney area that took time and lots of treatment to kill, which looks like it (hopefully) subsided this week. This led us to the fact that I had a differential diagnosis, and the next one was obviously the cancer.
We took a CT about a month ago, and there was not any progression; however I do and always had disease burden going into this trial. Scan by scan, my tumors have grown by millimeters, but not enough to qualify as progression. In addition our focus is always quality of life, which has continued well into 14 months of treatment on the EBV+ Trial. Again, I can not even begin to state how grateful I have been for these fourteen months. So, so grateful.
So, our conclusion. I am a complex case, no one can deny that with a previous kidney disease in 2002, to almost six years of cancer, earning a Master's Degree, completing two internships -- and still kicking ass and looking cute doing it. I mean really how many people can do that? ;) In the end, my body could just be tired of handling this disease burden and is ready for my tumors to shrink a bit more before these "B symptoms" (night sweats, fevers) die down. Or it could have been the prefect storm: My EBV trial produces lots of inflammation, I had inflammation at one point during my Kidney Infection these past few months, and the cancer itself could all have combined to what we are looking at now. We will never know, all we can do is take the pieces of the puzzle we do have and put them together to form a plan to shrink the cancer.
Our Plan: Unfortunately during this process I have dropped 10 lbs since June. Way too much for me. Putting on weight is our number one goal and a BIG mental recovery. Not knowing these last two months has been the worst form of torture for any kind of patient -- all of us know this, the unknown is the scariest part. Now that we have a plan, I have one hundred times more secure and I can feel my spark turning into a flame again to push on, but after one straight month of scans, I need food, no doctors, and time to heal.
Step One: Therefore, O'connor has put me on steroids this accomplishes several things: Steroids cuts inflammation, it will cut the lymphoma temporarily. Steroids increases hunger (and crazy unwanted emotions!), in turn, I've been eating like a starving person these last two days, it's been incredible. Steroids will give me time to recover physically and put on hopefully another five pounds before our next step: treatment. Steroids will also cut the fevers and night sweats. All in all a good first step.
Step Two: In two weeks we will start chemotherapy called Revlimid. NOT a clinical trial (wahooo!) This is an approved drug for myelodysplastic syndrome, myeloma (cancer of the bone marrow) and now is being entered into the NHL and HL world for treatment.
This drug was previously known as Lenalidomide, that some women might be aware of in the 60's and 70's to be given to those in pregnancy and unfortunately their children ended up having major birth defects. Revlimid/Lenalidomide is in a class of medications called immunomodulatory agents. It works by helping
the bone marrow to produce normal blood cells and by killing abnormal cells in the bone marrow.
-------
So kids, that is the plan for now. I am fortunate that I have an amazing network of refractory HLers that have confirmed that this is a semi-normal treatment regimen. Meaning that they are able to work full-time on it with minimal side effects. For now we will take this next month or two and see how things shake out in hopes that I can take the next steps of my life as planned.
Although I am exhausted and everyone is mentally drained, we have a plan. And due to the lack of control with this disease, a plan is something very valuable to hold on to during these unknown times. After Friday's appointment I feel much more mentally at ease and now know what I have to do: eat, eat, and eat before we start round 15.
So what can you do? A LOT of people in the area have been asking just that. Although everyone knows I'm pretty stubborn in allowing anyone to help, I'm budging on this one because I know how crucial it is. Something that could be very useful to me would be a "drop and go meal." If anyone out there enjoys to cook or would be willing to drop off a meal (and know I probably won't be up to chatting) but could just drop it on the doorstep, whether I am here or not and let me know when they'd like to drop it so someone can bring it in, it would be a huge, HUGE help.
The best way to do this so I don't get ambushed with three baked zits in one week would be to email me. Let me know what you'd like to make and what day or time you'd like to drop it off. I can email you back with my address and a confirmation. In situations like this, it is always so wonderful to give two options (whether that be meals or times to drop off). However in the end I am thankful no matter what time of day or what meal, and I will make it work. Just to note though: your love and support is all I really need but for those who are INSISTENT :) on doing something for me, this would be much more beneficial in the long run for my body.
Okay Kids, that is about all for now. Again, it has been a miserable two months to say the least. But with
a plan in place and steroids in my tummy I feel stronger already, a little crazy...
Sending love and light
to each and every one of you,
xoxo,
B.
-----
First and foremost I would just like to thank you all once again for your unwavering support. I continue to realize each time there is a bump in the road I suddenly have this army of individuals cheering for me, sending me love and positive vibes, and just being there. It's an amazing, amazing feeling to not just be cared for by your inner circle of family and friends but by the HL community, and another entire extension of friends that I have met along my different paths... I become overwhelmed, and although I do not respond to each one of you I hope you all know that I hear you, I hear everything you write or say.
To also preface this post before some negative news, I would like to ensure everyone that although some of these new bumps in the road are not what we hoped for, it could not have come at a better time. I just completed my Master's degree in July. I ventured through a whole year of studies and internship and finally finished my degree. A degree where I've once again been blessed to be connected with a few amazing women who I know will call my life-long friends..
These symptoms occurred just as Rich and I were coming home from our amazing and life-changing vacation where I was in zero pain and able to push my body to some of my best physical capabilities... I am so thankful that my symptoms did not occur till the moment we started packing our bags for home. We were able to totally suck the marrow out of that trip like no other, and I am so, so grateful for NJCASA, Kim and Joel for making this trip possible for me and Rich. We would never have been able to experience such a trip without the generosity and kindness of incredible strangers and a beautiful organization such as NJCASA.
I'm also grateful that (some) things happen for a reason, that I haven't jumped into a position yet and now I have the time I need to have to recover from the last two months and prepare for what is to come before I start venturing into the working world. To have time to mentally recharge myself and renourish my mind and body before I take these next steps.
-------
So what are the next steps?
Here is a break down of what happened this week:
- Once I left O'connors office on Monday, he took me off all my medications except for Tylenol and Kytril (anti-nausua medications). If there was an infection to be found by Thurs/Fri we needed to make it happen and being on antibiotics was not going to help that cause.
- I'm not sure why my symptoms shifted after this -- but they did, and I'm incredibly thankful that they happened this week, while I was in NYC and under O's care, and have the ability to see him twice in one week, now how many O patients can say that! :)
- The symptom switch: Monday came with a huge surprise: my pain started decreasing. After a miserable weekend of pain, all of a sudden poof -- they stopped completely. It was such a relief; however, the trade off was 24/7 fevers low and high up to 102.2 some nights, and they kicked my ass. Even with Tylenol there wasn't much relief at times, but there was one afternoon Rich and I were able to have at least one lunch outside of the hotel and Hope Lodge.
- Along with fevers, came the sweating. At first I couldn't differentiate if my sweating was due to the culmination of fevers happening towards the end of the day/night and they were just breaking. Or if it was that classic B Hodgkin's symptom of "night sweats" by Wednesday night I was pretty convinced that these were night sweats and that this was being caused by the cancer. However, we all tried to to keep an open mind until the Indium, WBC scan happened on Thurs/Friday.
- After a long, long day on Thursday and Friday with several appointments in and out of the hospital for this specific scan (taking blood, waiting four hours, reinfusing the blood with trackers, then scanning twice on Friday morning and an appointment with O'connor Friday afternoon, and more blood work), it was all done and we had the best answers that the team could come up with..
We took a CT about a month ago, and there was not any progression; however I do and always had disease burden going into this trial. Scan by scan, my tumors have grown by millimeters, but not enough to qualify as progression. In addition our focus is always quality of life, which has continued well into 14 months of treatment on the EBV+ Trial. Again, I can not even begin to state how grateful I have been for these fourteen months. So, so grateful.
So, our conclusion. I am a complex case, no one can deny that with a previous kidney disease in 2002, to almost six years of cancer, earning a Master's Degree, completing two internships -- and still kicking ass and looking cute doing it. I mean really how many people can do that? ;) In the end, my body could just be tired of handling this disease burden and is ready for my tumors to shrink a bit more before these "B symptoms" (night sweats, fevers) die down. Or it could have been the prefect storm: My EBV trial produces lots of inflammation, I had inflammation at one point during my Kidney Infection these past few months, and the cancer itself could all have combined to what we are looking at now. We will never know, all we can do is take the pieces of the puzzle we do have and put them together to form a plan to shrink the cancer.
Our Plan: Unfortunately during this process I have dropped 10 lbs since June. Way too much for me. Putting on weight is our number one goal and a BIG mental recovery. Not knowing these last two months has been the worst form of torture for any kind of patient -- all of us know this, the unknown is the scariest part. Now that we have a plan, I have one hundred times more secure and I can feel my spark turning into a flame again to push on, but after one straight month of scans, I need food, no doctors, and time to heal.
Step One: Therefore, O'connor has put me on steroids this accomplishes several things: Steroids cuts inflammation, it will cut the lymphoma temporarily. Steroids increases hunger (and crazy unwanted emotions!), in turn, I've been eating like a starving person these last two days, it's been incredible. Steroids will give me time to recover physically and put on hopefully another five pounds before our next step: treatment. Steroids will also cut the fevers and night sweats. All in all a good first step.
Step Two: In two weeks we will start chemotherapy called Revlimid. NOT a clinical trial (wahooo!) This is an approved drug for myelodysplastic syndrome, myeloma (cancer of the bone marrow) and now is being entered into the NHL and HL world for treatment.
This drug was previously known as Lenalidomide, that some women might be aware of in the 60's and 70's to be given to those in pregnancy and unfortunately their children ended up having major birth defects. Revlimid/Lenalidomide is in a class of medications called immunomodulatory agents. It works by helping
the bone marrow to produce normal blood cells and by killing abnormal cells in the bone marrow.
-------
So kids, that is the plan for now. I am fortunate that I have an amazing network of refractory HLers that have confirmed that this is a semi-normal treatment regimen. Meaning that they are able to work full-time on it with minimal side effects. For now we will take this next month or two and see how things shake out in hopes that I can take the next steps of my life as planned.
Although I am exhausted and everyone is mentally drained, we have a plan. And due to the lack of control with this disease, a plan is something very valuable to hold on to during these unknown times. After Friday's appointment I feel much more mentally at ease and now know what I have to do: eat, eat, and eat before we start round 15.
So what can you do? A LOT of people in the area have been asking just that. Although everyone knows I'm pretty stubborn in allowing anyone to help, I'm budging on this one because I know how crucial it is. Something that could be very useful to me would be a "drop and go meal." If anyone out there enjoys to cook or would be willing to drop off a meal (and know I probably won't be up to chatting) but could just drop it on the doorstep, whether I am here or not and let me know when they'd like to drop it so someone can bring it in, it would be a huge, HUGE help.
The best way to do this so I don't get ambushed with three baked zits in one week would be to email me. Let me know what you'd like to make and what day or time you'd like to drop it off. I can email you back with my address and a confirmation. In situations like this, it is always so wonderful to give two options (whether that be meals or times to drop off). However in the end I am thankful no matter what time of day or what meal, and I will make it work. Just to note though: your love and support is all I really need but for those who are INSISTENT :) on doing something for me, this would be much more beneficial in the long run for my body.
Okay Kids, that is about all for now. Again, it has been a miserable two months to say the least. But with
a plan in place and steroids in my tummy I feel stronger already, a little crazy...
But still stronger...
Sending love and light
to each and every one of you,
xoxo,
B.
Tuesday, August 21, 2012
Confusion
I know I have been promising a lot of individuals an update, or a call or text back. Your support is incredibly overwhelming and comforting, and I truly appreciate every single one of you for either checking in with me or making it easier on me and bombarding Rich with those calls so I can focus on what needs to be taken care of...
Unfortunately Upenn Gyno/Urology had nothing to say about my case, Dr. Gracia who is very well known there took incredible care of me and we did some tests however everything showed up normal. When you are sick and nothing shows up it can be quite frustrating as these symptoms have been on and off now for two months and... I am tired. I think everyone is, to be honest.
After a lovely check-up but zero answers in the PA area, Rich and I came up to NYC on Sunday and I had an all day appointment with O'connor's team. We started from Day One of Symptoms back in June and looked through every piece of imaging, all of my symptoms and blood work. Again, everything normal. Except for my not so lovely side effects and the fact that yes, I am a cancer patient. This leads O'connor and his team to two conclusions:
1) I may still have an infection, and so on Thursday we will do an Indium WBC Scan . This scan is a nuclear procedure in which white blood cells (mostlyneutrophils) are removed from the me (a bunch of blood) then they are tagged with the radioisotope Indium-111, and then injected intravenously back into me. The tagged leukocytes subsequently localize to areas of relatively new infection. So these areas will light up in even the most sensitive areas if there is an infection in the kidney, which obviously we are all hoping for, but at this point might not be likely.
2) It's my cancer. My disease burden has been low, and even though it would be a very difficult pill to swallow the truth is, nothing else is showing up on any scans or tests except my cancer (which is still stable). My body after a year and a half just may not be able to handle this amount of disease consistently and so it could be acting out in these symptoms. If the test on Thursday/Results Friday do not show any infection whatsoever in my body, we probably will conclude that it is my Hodgkin's, making it's appearance once again before I attempt to take huge steps in other directions (professionally and moving to a different area).
In the end, no one seems to know what this is for sure which is confusing, frustrating, and obviously upsetting. The EBV+ Trial has given me such an amazing quality of life, and to have to put that behind us will be heartbreaking. However, I should not jump to any conclusions just yet, we are taking this a day and a test at a time. So a day at a time it is, and I will attempt to keep everyone as updated as I can on the new happenings.
Thank you for all the love and support,
Lots of Light,
B.
Unfortunately Upenn Gyno/Urology had nothing to say about my case, Dr. Gracia who is very well known there took incredible care of me and we did some tests however everything showed up normal. When you are sick and nothing shows up it can be quite frustrating as these symptoms have been on and off now for two months and... I am tired. I think everyone is, to be honest.
After a lovely check-up but zero answers in the PA area, Rich and I came up to NYC on Sunday and I had an all day appointment with O'connor's team. We started from Day One of Symptoms back in June and looked through every piece of imaging, all of my symptoms and blood work. Again, everything normal. Except for my not so lovely side effects and the fact that yes, I am a cancer patient. This leads O'connor and his team to two conclusions:
1) I may still have an infection, and so on Thursday we will do an Indium WBC Scan . This scan is a nuclear procedure in which white blood cells (mostlyneutrophils) are removed from the me (a bunch of blood) then they are tagged with the radioisotope Indium-111, and then injected intravenously back into me. The tagged leukocytes subsequently localize to areas of relatively new infection. So these areas will light up in even the most sensitive areas if there is an infection in the kidney, which obviously we are all hoping for, but at this point might not be likely.
2) It's my cancer. My disease burden has been low, and even though it would be a very difficult pill to swallow the truth is, nothing else is showing up on any scans or tests except my cancer (which is still stable). My body after a year and a half just may not be able to handle this amount of disease consistently and so it could be acting out in these symptoms. If the test on Thursday/Results Friday do not show any infection whatsoever in my body, we probably will conclude that it is my Hodgkin's, making it's appearance once again before I attempt to take huge steps in other directions (professionally and moving to a different area).
In the end, no one seems to know what this is for sure which is confusing, frustrating, and obviously upsetting. The EBV+ Trial has given me such an amazing quality of life, and to have to put that behind us will be heartbreaking. However, I should not jump to any conclusions just yet, we are taking this a day and a test at a time. So a day at a time it is, and I will attempt to keep everyone as updated as I can on the new happenings.
Thank you for all the love and support,
Lots of Light,
B.
Tuesday, August 14, 2012
The terrible, horrible, no-good, very bad summer.
I have been dreading writing this post, hoping this health "hiccup" would be just that; however, it has turned from one week to two months of pain and frustration. Nothing, nothing compared to what some other warriors are going through, or even what I experienced years ago. But after have a very healthy year, and my body suddenly caving in on me. I am a bit heated over the subject.
Rich and I were fortunate enough to go on a trip in early June that was donated to us through NJCASA, we paid only a small sum of money for six whole days on the Big Island of Hawaii, it was picturesque and surreal. Our days were filled with breakfasts on the beach, hiking up mountains, listening to stories of the natives who lived there, and trying every single local, hole in the wall, restaurant we could find. We hiked over miles of lava rock to reside on pristine white beaches for entire days...carrying our flippers and snorkel gear just like it was a daily accessory. It was paradise.
The last day of the trip on the way home, I started having abdominal pain -- nothing too bad, but not good either. The pain is located in the tissue/muscle area on the right side of my abdomen, adjacent to my hip bone. It comes and goes with the pain ranging from One to Seven. Thinking nothing but something of it, I scheduled a doctor appointment, which eventually led to "you're fine, but go to the ER if it gets worse." Which led to... an ER visit, with fluids, and pain meds, and then the pain was gone. This was the third week of June.
A week later, I had to put my precious pup Lilly down to sleep. She was fourteen, and has very well been my partner in crime throughout all of my treatments, heartaches, achievements, lonely nights and celebrations. Lil had been diagnosed with cancer six months prior and although I was told she had more time, I could tell the decline was happening. On July 5th, I held her till our vet put her down. Although I've had loss, my entire world was absolutely shaken by the void that was suddenly left in me. I was so unprepared, and the days that followed were not some of my best.
In addition, during these weeks the HL community had another devastating blow as Shea, an 18 year old absolute beauty went into the hospital due to infections and quietly slipped away with her family surrounding her. The Anderluh's are in my constant thoughts, these losses are terribly heartbreaking.
During this time, my abdominal pain returned, along with kidney pain, with it's friends: nausea, vomiting, and high-grade fevers, and a weight loss of seven lbs. Through these weeks, the weeks I prepared for, for so long in my education the last week of internship and last two weeks of class. I could not even move off the bed or couch, and started going in for IV infusions of fluid, thinking that the loss of Lily, and not watching my intake of fluid/food was the perpetrator. In the early weeks of July, I had to call out of too many obligations and responsibilities and I began to realize this was more than just the loss of my fur-love.
When the fevers began to gain control, and shakes and shivers were happening I finally called my team in NYC and met with them for an assessment and scans. With my cancer being completely stable, we looked outside the box. My symptoms were classic Pyelonephritis (Kidney infection), and right away I was put on IV antibiotics. Although I felt well the first week on the meds, my cultures ended up revealing that I did not have any infection whatsoever, something that we were all confused and frustrated over. If you do not know what you're treating, and you just go on antibiotics, in the end you are only temporarily treating the infection. So, here we were at square one again, and my symptoms began roaring back.
At first, I thought this was just my body slowly recovering since I've obviously been heavily treated; however, without the culture begin positive it was of high concern that we were looking for another infection. With days going by and weight dropping, I made the trip down to Texas (somehow) on August 8th for the EBV+ Trial. Oddly enough I did not have fevers that day, and was administered the drug. The plane ride home though had to be one of the most traumatic ones I've had. At lift off my shaking and shivers began and were uncontrollable, Rich and I had packed several blankets and even wrapping me up in a cocoon couldn't stop my convulsing body. Throughout the entire trip, Rich encased my body with his arms, held ice to my head when I started burning up/spiking fevers, and ordered too many tea's too count in which our flight attendant didn't seem to appreciate one bit. As we got home, and I retrieved my thermometer, my body was just coming down from the shakes, and it was 101.6 -- I couldn't imagine what it had been on the plane.
The next morning, this past Friday I went into the Doylestown infusion room to receive fluids or any kind of supportive care. This, in turn led to being admitted to Doylestown where the doctors although all admitted to my sickly face that "I was above their pay grade." Suggested I needed to go somewhere else after they had ordered every single test imaginable from CT's of the body and brain, MRI, IVP, Ultra Sounds, Echo's, Cultures, and more...
The result was there is none. We have ruled out specifically: kidney infection/stones, gallbladder/stones, appendix, cancer, brain/heart issues, obstructions/stones between bladder and kidney area, twisted or abnormal ovary movement, and many others... On paper my body looks immaculate and without infection. However, I continue to have fevers, nausea, and some vomiting. Although the Doylestown team did not find anything, Dr. O ordered IV antibiotics to make me comfortable at least so I could attempt to put on more weight and have running fluids.
In a word, I just feel defeated. Tomorrow I travel to Upenn to see a Urologist, since we first thought this was a kidney infection, maybe she has a different opinion on what's going on, after that, I will continue with oral antibiotics. I am feeling 'okay' not great though. The abdominal pain resurfaced after I came home from the hospital this afternoon and it is raging within my stomach, it is a struggle to eat, and I feel so incredibly weak since I have really struggled to be active in anyway.
It has been a long two months, and although I am so grateful for finishing up school (with supervisors and professors being so understanding), and our vacation in June. I am sitting here quite perplexed. How is it possible that two months ago I was hiking some of the rockiest trails in Hawaii, and now I can barely walk down a hallway without huffing and puffing? The unknown is certainly a scary place to be.
As always -- I am so thankful that I am still here, no matter how much pain or the "unknown" surrounds this body.
So today, to keep focus on that...I am grateful for:
As always, I'm sure we will find the answer somewhere -- I am just hoping it is sooner rather than later.
Sending Love,
B.
Rich and I were fortunate enough to go on a trip in early June that was donated to us through NJCASA, we paid only a small sum of money for six whole days on the Big Island of Hawaii, it was picturesque and surreal. Our days were filled with breakfasts on the beach, hiking up mountains, listening to stories of the natives who lived there, and trying every single local, hole in the wall, restaurant we could find. We hiked over miles of lava rock to reside on pristine white beaches for entire days...carrying our flippers and snorkel gear just like it was a daily accessory. It was paradise.
The last day of the trip on the way home, I started having abdominal pain -- nothing too bad, but not good either. The pain is located in the tissue/muscle area on the right side of my abdomen, adjacent to my hip bone. It comes and goes with the pain ranging from One to Seven. Thinking nothing but something of it, I scheduled a doctor appointment, which eventually led to "you're fine, but go to the ER if it gets worse." Which led to... an ER visit, with fluids, and pain meds, and then the pain was gone. This was the third week of June.
A week later, I had to put my precious pup Lilly down to sleep. She was fourteen, and has very well been my partner in crime throughout all of my treatments, heartaches, achievements, lonely nights and celebrations. Lil had been diagnosed with cancer six months prior and although I was told she had more time, I could tell the decline was happening. On July 5th, I held her till our vet put her down. Although I've had loss, my entire world was absolutely shaken by the void that was suddenly left in me. I was so unprepared, and the days that followed were not some of my best.
In addition, during these weeks the HL community had another devastating blow as Shea, an 18 year old absolute beauty went into the hospital due to infections and quietly slipped away with her family surrounding her. The Anderluh's are in my constant thoughts, these losses are terribly heartbreaking.
During this time, my abdominal pain returned, along with kidney pain, with it's friends: nausea, vomiting, and high-grade fevers, and a weight loss of seven lbs. Through these weeks, the weeks I prepared for, for so long in my education the last week of internship and last two weeks of class. I could not even move off the bed or couch, and started going in for IV infusions of fluid, thinking that the loss of Lily, and not watching my intake of fluid/food was the perpetrator. In the early weeks of July, I had to call out of too many obligations and responsibilities and I began to realize this was more than just the loss of my fur-love.
When the fevers began to gain control, and shakes and shivers were happening I finally called my team in NYC and met with them for an assessment and scans. With my cancer being completely stable, we looked outside the box. My symptoms were classic Pyelonephritis (Kidney infection), and right away I was put on IV antibiotics. Although I felt well the first week on the meds, my cultures ended up revealing that I did not have any infection whatsoever, something that we were all confused and frustrated over. If you do not know what you're treating, and you just go on antibiotics, in the end you are only temporarily treating the infection. So, here we were at square one again, and my symptoms began roaring back.
At first, I thought this was just my body slowly recovering since I've obviously been heavily treated; however, without the culture begin positive it was of high concern that we were looking for another infection. With days going by and weight dropping, I made the trip down to Texas (somehow) on August 8th for the EBV+ Trial. Oddly enough I did not have fevers that day, and was administered the drug. The plane ride home though had to be one of the most traumatic ones I've had. At lift off my shaking and shivers began and were uncontrollable, Rich and I had packed several blankets and even wrapping me up in a cocoon couldn't stop my convulsing body. Throughout the entire trip, Rich encased my body with his arms, held ice to my head when I started burning up/spiking fevers, and ordered too many tea's too count in which our flight attendant didn't seem to appreciate one bit. As we got home, and I retrieved my thermometer, my body was just coming down from the shakes, and it was 101.6 -- I couldn't imagine what it had been on the plane.
The next morning, this past Friday I went into the Doylestown infusion room to receive fluids or any kind of supportive care. This, in turn led to being admitted to Doylestown where the doctors although all admitted to my sickly face that "I was above their pay grade." Suggested I needed to go somewhere else after they had ordered every single test imaginable from CT's of the body and brain, MRI, IVP, Ultra Sounds, Echo's, Cultures, and more...
The result was there is none. We have ruled out specifically: kidney infection/stones, gallbladder/stones, appendix, cancer, brain/heart issues, obstructions/stones between bladder and kidney area, twisted or abnormal ovary movement, and many others... On paper my body looks immaculate and without infection. However, I continue to have fevers, nausea, and some vomiting. Although the Doylestown team did not find anything, Dr. O ordered IV antibiotics to make me comfortable at least so I could attempt to put on more weight and have running fluids.
In a word, I just feel defeated. Tomorrow I travel to Upenn to see a Urologist, since we first thought this was a kidney infection, maybe she has a different opinion on what's going on, after that, I will continue with oral antibiotics. I am feeling 'okay' not great though. The abdominal pain resurfaced after I came home from the hospital this afternoon and it is raging within my stomach, it is a struggle to eat, and I feel so incredibly weak since I have really struggled to be active in anyway.
It has been a long two months, and although I am so grateful for finishing up school (with supervisors and professors being so understanding), and our vacation in June. I am sitting here quite perplexed. How is it possible that two months ago I was hiking some of the rockiest trails in Hawaii, and now I can barely walk down a hallway without huffing and puffing? The unknown is certainly a scary place to be.
As always -- I am so thankful that I am still here, no matter how much pain or the "unknown" surrounds this body.
So today, to keep focus on that...I am grateful for:
- My ridiculous supportive partner who has watched this roller coaster first hand and will always break out in dance party mode for me to make me laugh
- My mommas, who yet again this team of women are always, always there advocating for me in and out of the hospital
- Everyone who has reached out wondering "where have you been?" it's nice knowing I have so many people in my corner, I am one lucky lady.
- Our vacation in paradise, I hang on to those moments of perfection while we are in and out of the hospitals these days.
As always, I'm sure we will find the answer somewhere -- I am just hoping it is sooner rather than later.
Sending Love,
B.
Subscribe to:
Posts (Atom)