September 14, 2012
It's been a whirlwind of a few weeks! Thank you for each of who have reached out with thoughts and prayers! I haven't been able to respond back to everyone but your prayers have been a source of encouragement and strength. I'll try to fill you in on what's going on...
For the last few months I was being treated for asthma. My symptoms started a few months ago but were easily attributed to my childhood asthma and environmental factors. I noticed a rapid decline within the last few weeks. Thursday, 9/6/12, I went for a standard asthma check up. My doctor was concerned that I wasn't responding to the meds he had me on and asked me to go get a chest xray. I went across the street to the urgent care facility that afternoon. They told me I had a tumor in my chest and possible lymphoma and referred me to a specialist. It was Thursday and they didn't think I'd get in that week but said to follow up immediately. I passed all this on to my mom and like the amazing lady she is, she had an appointment for me with a pulmonary specialist the following day. He looked at my tests, confirmed the diagnosis of lymphoma and a chest tumor, and admitted me to the hospital that afternooon. I asked what could have "caused" it and they don't know. They haven't found what brings this on. It's not "normal" for someone my age and health but I do fall in the range of those who statistically get this. He said based on the size of the tumor it's been growing about 9 months. The tumor is inoperable because it is not clearly defined but has many starting and stopping points.
So many things happened in the next 7 days...some of them I barely remember. They did alot of tests to see how far the lymphoma had spread as well as testing to see how strong I was for a chemo program. I haven't ever had surgery or any major procedure so each one was a new adventure. I had a thoracentesis procedure the day I was admitted where they removed 2 liters of fluid from my left lung (the side the tumor is leaning on). You're completely awake although they do give you a calming medicine. They poke a hole in your back and basically just drain out the fluid. It's a strange sensation! My left lung hadn't had air in it for so long it went into spasms but after it stopped I felt better than I had in months. I had a bone marrow biopsy. You're also awake for that although they do numb you to the bone. That procedure was probably the most painful one I had that week but it wasn't like getting an arm sawed off or anything and God got me through it (and my mom who stayed by my side the whole time!). They installed a power port in my right shoulder. It's sort of like having my own international space station embedded in my skin. They put me under anesthesia for that procedure which was great. I also found out that I don't respond well to anesthesia. It made me pretty sick but it eventually passed and the procedure was a success. The port enables them to easily take bloodwork and give me my chemo treatments without always having to IV me. There were other procedures but they pale in comparison to the ones above :)
My oncologist is a great doctor and has been very aggressive in treating me. There's an 85% cure rate for my type of lymphoma (I have Non Hodgkins Lymphoma, mediastanal large cell B, stage 2E for those of you who want details!). He prescribed RCHOP chemotherapy and I had my first treatment last Thursday. I didn't respond really well to the first treatment and had some reaction setbacks. By Sunday I was coherent though and starting the recovery process.
Monday of this week I started a new job. The first day was great! Unfortunately I was still on alot of steroids as part of the chemo program. This in addition to all of the fluids they had pummped in me caused my body to swell up massively. I went to the ER Monday night and they readmitted me. My blood isn't coagulating properly and they were afraid of additional blood clots. I already have one in my left shoulder. They drained over 10 pounds of fluid off me on Tuesday. What a relief! I was out again by Wednesday and able to go back to work today.
Today I feel great...almost normal! I'm thankful for that :) Not all of my systems and levels are regulated but I'm better than I've been in weeks. I also received some good news from the tests they did this week. Although I have fluid again in my lungs and surrounding my heart and I only have about half of 1 lung capacity, the tests showed that I'm not rapidly accumulating fluid. It also showed that my heart is strong and in fact is working better than it was 2 weeks ago. Also the doctor was able to see some death in the tumor cells which is great considering it'd only been 5 days since chemo.
I should be feeling good for the next 2 weeks while my body rests and gets ready for the next treatment. My next chemo treatment is the first week of October. I'll have 6 total treatments, one every 3 weeks. The doctors believe that by the end of that the tumor will die and the lymphoma will be healed. I have much to be thankful for.
There are moments when I still grapple with the fact that I have cancer, with the fact that I'm sick, with the fact that I can't just go for a walk in my beautiful neighborhood or a bike ride like I love doing; but when I stop to reflect I can't help being thankful. I've been given such peace to take each day as its meted out. I won't take on tomorrow's illness or what if's. I'll get through today, thankful that it's not worse than it is, and knowing that God has got this. I'm not promised a pain free or easy battle but He's got this. I trust Him. I'm reminded of my once wild animal turned pet that learned to trust me implicity and although every fiber in his being is trained to fight and defend, he is content to let me hold him against my chest and let me take care of him. When he goes into one of his wild rages, usually from fear, I'll pick him up and hold him close to my chest. You can feel every muscle relax as I hold him close. He knows I've got him. I won't let anything happen to him. I will protect him. He's safe. He trusts me. How much more does my Heavenly Father care for me? I can rest. I'm not fighting this alone, wildly clawing for hope and strength. I relax and rest against Him, in His embrace, knowing that He's got this and it'll be ok.
I also have an amazing family who love me and are a daily encouragement to me. In addition to this I have so many people praying for me. Thank you!!! Please continue to keep me in your prayers! I have 5 more chemo treatments and would love to maintain a "normal" life while I go through this process. I would also love to be healed at the end of this ordeal. I turn 35 in a few weeks and it'd be great to start the year cancer (and tumor) free :)
I'll try to keep you all updated as I progress! Thanks for your patience as it takes me a while to repsond to all the emails and calls. Please know that it's an encouragement though!!!
September 28, 2012
I had a great follow up doctor's visit today. I'm so thankful for the good news :) The doctor said he heard air in the bottom of my left lung for the first time. He said it's still 25% filled with fluid but that's an improvement. It was 100% filled, then 75% and now 25%. The fluid, which has cancer cells in it, is diminishing and my body is processing it. It also helps explain the vibrations and lung cramps I've been having this week. He said as the air gets in the bottom half of the lung it's pushing the inner lining of the lung (which has nerve endings) into the outer lining of the lung (which doesn't have nerve endings) into each other and causing spasms and coughing spells. This is great news! :) The more air that gets in my left lung, the more I am able to breathe like a normal person :) I may even be able to start taking walks around the neighborhood soon :) My blood thickness is still not right, especially since I have a large blood clot in my left shoulder. I am on 10mg of coumadin a day;.5mg is what the average person needs. My blood went from 1 to 1.2 and it needs to be much higher, so he raised my coumadin level to 15mg a day. I don't have to continue the daily shots I was giving myself however. This means I bruise VERY easily :) I was scrubbing off some old tape gunk from the hospital the other day and now the spot looks like a beautiful rainbow :) I'm trying not to eat too many greens as the vitamin K will interfere with the coumadin, but just like when you tell a child he can have everything but.....all I'm craving right now is spinach and broccoli :)
To see progress in healing after the first chemo is encouraging. I have 5 more and Lord willing I will be completely healed when they're done and can work on re-strengthening my body and building its immune system.
Chemo #2 is next week. Boy did that come fast! I go in Thursday for the chemo. The doctor is changing the nausea meds and we're hoping to avoid the days of nausea I had following the infusion. Keep me in your prayers! Also, the chemo burned my throat the last time. Not only is this painful, it slows down the infusion process and rather than being a 7 hour procedure it was more like a 12 hour procedure. The doctor said today that there really isn't any meds they can give you for that but that most people's bodies adjust to the chemo and they stop having that reaction by the 2nd infusion. Please pray that my body responds like most people's (unlike the coumadin!) and I don't get the throat burn next week :) The only other side effect related prayer request is the exhaustion. Last time it took a week to get my energy back...and I don't even remember the first 4 days. I have Thursday and Friday off and would love to be able to get back to work on Monday. My new job has been amazing and very generous with me but I'd love to be back at work and coherent on Monday morning :)
The "serious" hair loss starts with this treatment. The doctor said to expect it all to fall off the first week after this infusion. My parents already bought me a super cute wig that I've been wearing :) I'm thankful it's fall and not 100 degrees and high humidity....it could be worse! I also have to go back on steroids for a week during the infusion....not my favorite thing. This is also part of what caused all the fluid problems I had last time. I'll only be on it 5 days instead of the 3 weeks I was before though so hopefully I won't have any more late night ER visits following the infusion :)
I've been so thankful to be feeling good these last few weeks. I can't believe how much better I feel! It makes me realize how sick I was :) The next 2 weeks could be rough but then it should be followed by 2 more good weeks....and on and on through the end of December :)
Thank you for your prayers! I'll let you know how the infusion goes next week...
October 7, 2012
Wow! What a completely different reaction to the chemo infusion this time!!! I am so thankful! I have not gotten sick once! The throat burn/swelling did start about 20 minutes into the infusion but we caught it quickly and my doctor remedied it by prescribing more benedryl. The infusion only took 7.5 hours instead of the 10 hours last time.
I have not had nearly the reaction that I did last time. I have not had naseau or been sick (I was for days last time). I have slept ALOT the last 2 days but when I'm awake I have energy and even enjoyed cleaning the house.
Today I'm experiencing some swelling in my joints due to the high steroids I'm on but it still is not as bad as last time when I ended up in the emergency room. Tomorrow is my last steroid dose for this round so if I can make it through the next 48 hours I should be good!
I should start feeling even better in the next 2 weeks as my body heals and processes the drugs that I was just infused with. The doctor listened to my lungs Friday and said he could clearly hear air in my entire left lung...even the bottom...for the first time! I have little or no fluid in my lung (which means no cancer cells either). Because the fluid is gone my cough has almost completely disappeared and my breathing is normal (I can't run a marathon but I can walk and live "normally") :) In fact, the doctor was so pleased with the progress he could see that he moved the PET scan until after the next chemo infusion. That will show the exact status of the tumor and fluid. I've lost all my hair...got my first buzz cut :) Another "experience" I can check off life's list :)
Thank you all so much for your prayers and thoughts...and thanks to my amazing mom for taking care of me again during this infusion (I get loopy from one of the drugs for at least a day!). It's so comforting to have family and friends around to go through this with me :)
October 17, 2012
At my doctor's visit today they said that my blood actually got thicker/more clotting, not thinner...they are really having a hard time thinning it out. The only reason this is a problem is because of the blood clot in my shoulder. They're trying to thin it out so that it dissolves on its own rather than moving to the heart or lung. My ...doctor increased my cumidin to 20mg 4 x's a week and 15mg 3 x's a week...which is an unheard of high dose. We'll see what happens!
My 3rd infusion is next Friday as long as I stay healthy this week. I've been feeling good but I'm ready for these infusions to be done :) I've been trying to exercise this week and am enjoying walking and yoga....will try biking again soon if I continue to feel good! I'm very thankful to be able to be out and enjoying the fall weather...it's always been my favorite time of year.
On to my funny stories....
First one: I was in the grocery store and this little kid starting telling her mom (very loudly!), "She's bald Mommy!", "She's bald!". At first I started looking around to see who the kid was talking about....and then I realized....me :) The mother ignored her which of course made the girl continue to shout it until I left the aisle. Even though I had a hat on, I did not have my wig on and you can still tell I have no hair and apparently the kid really wanted to point that out :) It was comical...kids are so honest...funny that I totally forget about it until I see myself in the mirror or someone looks at me funny or a kid yells it out in the grocery store :)
Second one: I was in the waiting room at my doctor's office today and this couple came in. He was elderly and very feeble. She was dressed "to the nines". He was the patient. They checked in and you could hear that he was a joker...he made several jokes with the nurse and you could tell he was upbeat. They took a seat after checking in and after a minute the wife stood up and told her husband she was going to get a cup of coffee (the table with the coffee was no more than 7 steps away from them). She told him "watch my purse" several times.....as a side note, this is ironic to me that she would feel the need in a room full of cancer patients to have her purse guarded that closely so she could walk 7 steps away to an open table and get a Keurig cup of coffee; it did make me wonder what was in the designer bag....he was very patient and then finally looked up at her past the baseball cap that was clearly too big for him and smiled through his smudgy glasses that were half slid down his nose. He said very sweetly and with a smile, "Well, I'll watch it but I don't know if I can defend it" :) The mental images that came flooding to my brain of this sweet, funny man protecting her purse cracked me up :) I think the thing that tickled me the most was his "lighten up" attitude...he clearly was going through alot and yet he managed to not be taking life too seriously. She was so concerned with protecting whatever was in her purse and he seemed to have a different handle on what was so important in life...
October 24, 2012
Just had my doctor's appointment and I'll have my 3rd chemo infusion this Friday...3 more infusions after this one so I'm halfway there :)
My INR was 2.8 which was very encouraging! It's the first time it's been over 1.4 since I started. It needs to be in the 2-3 range so right now it's normal and my coumadin level didn't have to increase again :) I'm on 125mg a week and hopefully we'll be able to start tapering that down if my INR stays high. I'll get an ultrasound in another 1.5 months to check the status of the blood clot which hopefully will be gone and I can stop the coumadin completely.
I'll have another PET scan in 2 weeks which will show the exact progress of the tumor. Based on my progress and other symptoms we're expecting it to go down but still be there for now. After the 6th chemo treatment we'll repeat the PET scan and are hoping for the tumor to be completely "dead".
Long term the doctor and I chatted about my prognosis. The tumor will never completely disappear but it should die off with the chemo and become just a mass of dead tissue and scar tissue. The doctor is hoping for complete remission...aka "to be cured"...of my Lymphoma after the 6th chemo. This happens in 60-70% of the cases. In the other 30-40% of the cases the Lymphoma comes back at some point in life...can happen anytime. If this happens the doctor said "it's bad" :) he really breaks things down for me :) If it comes back it will come back strong and I'll need an even stronger chemo regime (that thought makes me faint) AND a bone marrow transplant. We'll just have to wait and see on this one....the only thing I can do is just leave it in God's hands and forget about it :)
The doctor has adjusted all my infusion meds and since I responded well the last time we're expecting that this time. I don't want to be infused Friday....but I know the grace will come for the moment I need it and I need to focus on everything I have to be thankful for...which is ALOT :)
HALFWAY THERE!!! :)
I'll update again after the PET scan results...
November 14, 2012
I had a good update at the doctor's today. My INR is 3.0 so it went down from 3 weeks ago but it is still in the normal range. This is good and means I can keep my Coumadin at 15mg's a day. It was cute to hear the gentleman ahead of me express concern that his Coumadin got increased from 4mg to 6mg a day....after you've been on 20mg's a day, 6mg seems like no big deal :)
I also got the results from my PET scan from last week and it was good news. My tumor went from 12x5cm to 7x3cm. It will never completely disappear but it should continue to shrink. The doctor was very pleased and said it was better than he was even expecting. The lymph nodes in my neck have completely returned to normal and the cancer cells are gone there...there was "no activity" in that region. The blood clot in my left shoulder was likely caused by the cancer cells and swelling of that lymph node. The blood clot should dissolve by the end of December and I should be able to get off the Coumadin at that point. The test showed that there was "marked reduction in abnormal activity with my mediastinal mass lesion"...aka, there is a marked reduction of the cancer cells in my chest tumor. The notes say, "marked response to therapy with near complete normalization of activity in the mass and marked reduction in overall size of the mass." So, the cancer seems to be cleared up in my lung and neck and is significantly reduced in my chest, and the tumor is shrinking. The doctor said we are just on "cruise control" for the next 3 chemo's and will do another PET scan and ultrasound in January to make sure everything has gone into remission.
So! I'm thankful for the good news of course :) I could use some prayers to get me through these last 3 infusions which will be the toughest. The doctor said these last 3 will show accumulative side effects and I may not be able to continue working. #4 out of 6 is this Friday....and they'll all be done by the end of the year.
I have much to be thankful for!
December 15, 2012
Just finished my doctor's visit before Friday's infusion and things are going well. They had trouble accessing my port to draw blood but thankfully it's a dual port so after several pricks they were able to get into one of them :) My levels continue to remain normal so we're keeping everything as is for now.
My 5th infusion is this Friday and my last infusion is 12/28. I am very much looking forward to being done with them! :)
Around the end of January they will do another PET scan as well as an ultrasound. The doctor thinks my blood clot will be gone by then and is planning on taking me off coumadin permanently. As far as the tumor and cancer cells...if the PET is normal, I will be officially in remission and will have another scan in 6-12 months to make sure I continue on that path. If the PET is abnormal, I will have another biopsy of the chest tumor. I had one in the hospital when I was diagnosed and although it's not on my top 5 favorite things to do it's really not a big deal. I'm awake for the procedure and just have a local anesthetic. If the biopsy comes back normal, I am in remission. If the biopsy comes back abnormal, I will undergo radiation. My doctor said he is expecting everything to be normal but to prepare myself for radiation in case everything is not. I'm really hoping not to have to go down that road but that's not on today's plate so we'll deal with that when we get there :)
I also checked about exercising as I would like to start getting into several forms of it (biking, weight lifting, hot yoga) and my doctor said I have no restrictions other than I can't exercise to the point of getting sore as my body has no reserves to deal with that or heal soreness in my body.
So the good news is, I have official doctor's notice to be both grouchy (due to the Prednisone) and lazy (no pain, no gain is not for me) :)
December 27, 2012
My last chemo is tomorrow! At least that's the plan...I came down with a cold this week and they may decide tomorrow morning that my white blood cell count is too low for the infusion...but as of right now I should get my 6th and final chemo infusion tomorrow morning. I have much to be thankful for and I am VERY much looking forward to being done with chemo!!! :)
I go back to get tested and see my doctor the third week of January. This will determine what the next steps are, including the possibility of radiation, but the doctor is expecting me to be in complete remission.