The family and friends of Molly Wood are uniting to raise money to help in her battle against Hodgkin's Lymphoma. Please read on for an update on Molly’s health. Molly was diagnosed with Stage IV Hodgkin’s Lymphoma in late 2010. After completing chemotherapy in the fall of 2011, Molly was cancer-free. Of course, her doctors continued to monitor Molly and last July they detected a new mass in her chest that appeared near her windpipe. Initially, they were not too concerned as the mass appeared to be exceptionally slow-growing. Following her most recent PET scan and a successful tissue biopsy, they have determined that the mass is cancerous and she has been diagnosed with Stage II Hodgkin’s Lymphoma - there appears to be no cancerous growth in her bone marrow this time.
Molly has met with her oncologist who has proposed a treatment plan that, while extremely rigorous, is also highly successful in treating recurrent Hodgkin’s. In addition to chemotherapy, Molly would also undergo a bone marrow transplant. The biggest drawback to this is that following the bone marrow transplant, Molly will not be able to receive chemotherapy treatment in the future should she ever need to. Due to this new development, she will be going to the Mayo clinic in Rochester, MN to get a second opinion. She may also seek a third opinion from the University of Nebraska at Omaha.
Molly will be unable to work during this time as she is traveling to get additional opinions from other doctors as well as once she begins the chosen course of treatment. As before, we are hoping to alleviate some of the burdens and stresses of her medical expenses. With your help, we can alleviate the financial responsibilities so that Molly can focus on once again being cancer-free!
Want to learn more?
The following are resources to help you learn more about Hodgkin's Lymphoma and the fight to find a cure
Mar.20.2017 at 8:35 PMHASTA LUEGO
If my minimal Spanish is any indication, I have decided upon doing alternative treatment south of the border, more specifically, Tijuana. The clinic is called Hope4Cancer and it focuses on non-toxic, non-invasive cancer treatment methods. It is not the same clinic for which I sought treatment in 2014. I will be leaving for San Diego on Tuesday, March 28th and my 1st day of treatment will be March 30th. It is a 7 day/week, 3 week program focusing on rebuilding and rebooting my immune system via detox methods, high dose vitamins, coffee enemas (yikes!) and nutrition, while at the same time using advanced equipment to kill the cancer. These advanced methods include producing a vaccine to my specific tumor proteins to promote an antigen-antibody response, as well as sound, light and heat therapies that will target the tumor cells without destroying healthy cells. I will also receive spiritual and emotional support in the form of something they call ‘recall healing’ with the idea that the development of cancer often has an emotional core. I am excited that they use a whole-body approach in their program. Western medicine focuses solely on killing the cancer, with no regard for nutrition or emotional issues.
Speaking of Western medicine, my oncologist is not yet aware of my decision. I have been playing phone tag with the U of IA cancer clinic and have not yet had a chance to speak with him. I think (hope) he will respect my decision and support me when I need blood work or imaging tests in the near future.
As I mentioned, I’ll be flying into San Diego on March 28th. There, I’ll meet my mom and 2 of my brothers who live in the city. On the morning of March 30th, a transporter from the clinic will pick up my mom and I and take us across the border and directly to the clinic, which is about 10 miles away. My mom and I will stay there for 3 weeks – no crossing the border every day, thank goodness – and on April 20th, I’ll be driven back to San Diego. For the next 3 months, I will follow their treatment plan and guidelines before going back for a 2-day follow-up visit. I’ll visit again in 6-9 months, again for 2 days. I fully expect this to be a lifestyle change and am acutely aware of the fact that this will be a marathon rather than a sprint to good health.
While I was angry I was forced into making another decision about my future treatment, I know, with 100% certainty, that this is the right choice for me. Throughout these 6 years, I have never once felt 100% certain about my treatment choice – shadows of doubt always lingered. After speaking with my oncologist regarding his recommendation, I felt so negative, so defeated and so stuck – stuck in the chemo cycle. No chemo has put in me remission before, so how would this be any different? A part of me feels like I’m becoming resistant to chemo. However, after talking with the clinic coordinator at Hope4Cancer, I felt hopeful and encouraged and my gut instinct was telling me that was where I needed to be.
Of course, these cancer clinics come at a cost, one that is not covered by insurance companies. I am so fortunate and eternally grateful to have supportive and generous parents, but anything to help alleviate these costs would be appreciated more than you know. Please spread the word and share my website with family, friends, colleagues, the entire internet, everyone and anyone you can think of who would be willing to help.
All of you play such a huge part in my emotional well-being. You truly brighten my mood and inspire me with every message, text, thought of well-wishes and prayer. It’s impossible to stay down when all of you are in my corner picking me back up. Thank you for all you have done and all you continue to do.
I may not be able to update my site much while I’m in Mexico, but be looking for a post the last week of April describing all the dirty details of my time there.
Much love, Molly
You can learn more about the clinic and it’s treatment methods at www.hope4cancer.comMar.15.2017 at 8:52 PMANOTHER FAILED ATTEMPT
Hello Everyone –
As you can tell by my title, things have taken a turn for the worse with my latest treatment. In October 2016, I started the immunotherapy drug Opdivo (nivolumab). I was really excited about this drug because it’s not chemotherapy and it was a different approach to treatment than I have taken in the past. It was a simple hour-long infusion every other week and I didn’t have any side effects from the drug. In late December I had a CT scan that indicated good results – most of the tumors in my lungs were gone as was about 50% of my tumor load. I was shocked but obviously elated to hear that my disease was responding so well to this treatment. I continued with the bi-weekly infusions for a total of 10 treatments until I had a PET scan last week.
The PET showed very different and much more devastating results than the CT. My tumors were growing and new tumors were forming at a significant rate. I now have multiple tumors along both sides of my neck, in my left armpit, in my left lung, a new and large one near my liver and bile duct and one in a cavity in the right side of my back. My oncologist could not tell me why the Opdivo stopped working other than that my disease has always proven to be aggressive. Understandably, I was crushed by this news – crushed not only for me, but for my family and loved ones as well. This has been a long road full of potholes and roadblocks – over 6 years since diagnosis – and with each setback I feel angrier and more devastated than the previous setback. After receiving 20 different chemo drugs during this 6-year process, it’s hard to not realize that my window of opportunity is closing, that my options are becoming fewer and farther between, that there is only so much one body can take before it waves the white flag in defeat or disappointment. I am not saying I’m defeated; I am not saying I’m stopping the fight; however, these setbacks have definitely taken a toll on both my body and my mind.
I left my oncologist’s room with the promise that he would be in touch with me in a few days with his recommendation on the next course of action. A few days later, he calls proposing that I start Brentuximab (a targeted chemotherapy drug) the following week. He feels that I don’t have a significant amount of time before I reach ‘crisis mode’ because of how aggressively the lymphoma is behaving. Me, being the stubborn person I am, told him I need more time to think about it and to assess and research all of my options. This week I have been doing a lot of research on both western and alternative treatments. I have learned so much and have spoken with people who are very knowledgeable about cancer. I can’t say that I have reached a decision yet, but mentally I do feel the best I’ve felt since getting the news. I feel lighter, more encouraged, more in control and, most importantly, not so angry. I hope to have a decision made by the end of the week because, as stubborn as I may be, I do know that time is not on my side.
I promise to post again soon with my decision. Thank you for continuing to remain with me on this roller coaster ride. The thoughts, love, prayers and support are appreciated more than you know.
Love, MollyNov.15.2016 at 6:24 PMAND THE WINNER IS…
Hello Again –
I wanted to write a quick update about which treatment option I ended up choosing. After meeting with the doc from Mayo and hearing his advice, I opted for Nivolumab, the immunotherapy drug. October 27th was my 1st treatment, which went off without a hitch. I spent about 2.5 hours in the outpatient infusion suite, but the infusion itself lasts only about an hour. The rest of the time was spent getting situated, receiving information about the drug, and waiting for the pharmacy to prepare it. After the infusion, I was free to leave and go about my day as normal. The regimen for Nivolumab is one infusion every 2 weeks, so I’ve also received my 2nd treatment. So far, I have not experienced any of the negative side effects that they have scared me with. In fact, my hemoglobin had even gone up one whole point between the 2 treatments! Yay for small victories.
Because I live in Iowa with an unpredictable winter season approaching, I have decided to, for the time being, transfer my treatments to a local hospital. I meet with an oncologist next week in Des Moines who is a colleague of my oncologist in Iowa City. The following day, which is the the day before Thanksgiving, I will receive my 3rd treatment. This treatment, and the treatments following, will be done locally. I will still meet with my doctor in Iowa City for checkups and for scans, but will be traveling there less frequently.
Thank you for checking in and for your continued prayers. My next scan is December 20, so I’ll be posting shortly after that. Cross your fingers and pray that this drug is the one that proves to be successful! Although the treatment this summer didn’t have the desired outcome, I still have so much to be thankful for…and so many people to thank for their continued love and support. Happy Thanksgiving to you all.
Love, MollyOct.23.2016 at 10:21 PMUTTER DEVASTATION
I am writing this tonight with an angry, frustrated and sad heart. As mentioned in my previous post, I had a PET scan in IA City on Sept 13th. This was a follow-up to the inconclusive PET I underwent in early July. By the title of my post, I’m sure you can guess that the results of the most recent scan are not in my favor. I was informed that several lymph nodes (10+) lit up in areas throughout my neck, chest and abdomen; the largest nodes are in my left neck, in both arm pits and under my right breast. My oncologist recommended we biopsy one of the nodes to ensure a Hodgkins’ diagnosis, so the following week, I reported back to IA City and they removed 3 core samples from the node in my left neck. These samples confirmed, yet again, Hodgkins lymphoma.
My doctor assured me that I am not out of treatment options and mentioned 3 different courses of action. The 1st option is a bone marrow transplant using a donor’s bone marrow. This is not even something I am willing to consider at this point for many reasons. The 2nd option is an antibody/chemotherapy drug called Brentuximab. It targets the cancer cells specifically, but it doesn’t have the greatest long-term success rate and there’s a good chance I could develop numbness and tingling in my hands and feet. Once this neuropathy occurs, I would have to stop using the drug. The 3rd option is not chemotherapy, rather an immunotheraphy drug called Nivolumab. It works by allowing the immune system to recognize and clear the cancer, but it can cause inflammation of several organs and also does not have the greatest long-term success rate.
To help me navigate through these choices, I decided to get a 2nd opinion at the Mayo clinic. On Friday, October 14th, I met with Dr. Nowakowski and for about an hour and a half, we discussed my health history and my future treatment options. He strongly recommended that I go with Nivolumab, the immunotherapy drug. He explained to me that while my body may respond short-term to chemo, it does not work well for me long-term and that I should try a different method entirely. He knows this drug better than anyone, as he was in charge of it’s clinical trials and was responsible in getting it FDA-approved. He felt that the patients responded well to the treatment with minimal side effects and that it is safe to administer even months after a stem cell transplant. I am so glad I was able to have met with him because his professional opinion has definitely helped me weigh out my options more clearly.
Unfortunately, on Tuesday night I had a set-back that has forced me to reach a decision sooner than later. I laid down to go to bed and felt an enormous amount of pressure/pain on my chest. No matter which way I laid, I could not find relief. I knew I wouldn’t be able to sleep that night and that something was terribly wrong, so I went to the ER at Mercy in West Des Moines. I didn’t have to wait long before I was in a room getting blood drawn and an EKG done. The EKG showed a very rapid heart rate and the blood work showed a hemoglobin of 5.7, which is critically low (normal is 12-16). They immediately rushed me in for a chest CT and then I was given 2 units of blood. They moved me from the ER to a patient room, where I stayed until Friday afternoon. During this time I kept spiking fevers, so I was given cycles of 4 different IV antibiotics to combat any infection in my system. I also had a CT of my abdomen, which showed the cause of my chest pain – the tumor underneath my right breast. Finally, after a negative urinalysis and 6 clean blood culture samples, they took me off the antibiotics and decided that the lymphoma was the main culprit behind the fevers and I was able to go home. Basically, they were being overly cautious because they didn’t know my case (and had no info from the University of IA) and because of my recent bone marrow transplant. My chest pain is much better, but I do have an appointment to see my oncologist in 2 days. I’m sure we’ll get the ball rolling on some sort of treatment plan. Also, I just want to say how grateful I am to those of you who donate blood – someone saved my life this week and that means more to me than any words can say.
I didn’t really want to start another treatment so soon, but I feel like my body is telling me differently. After I learned the transplant didn’t work, at all, I was completely destroyed mentally. It took a lot for me to get into the mindset to undergo that transplant and I truly had high hopes of a positive outcome. I was shattered to learn that it didn’t even work for 2 months. It made me think that it was all a waste of time – that I sat in that hospital room for 21 days for nothing. It has taken me quite a while to start to get over the anger, the hurt, the frustration and the negativity. I am slowly getting there, but it’s a process. I know I can’t turn back the clock, so I need to start looking toward the future and dust myself off. I am not done fighting.
Love you all,
MollyJul.29.2016 at 2:17 PMPET SCAN & RECOVERY
Hello Again –
I am now 2 months post-transplant & have been feeing really good – I have regained a lot of my energy & feel better every day. My PET scan on July 5th showed a few things of interest. I developed pneumonitis or some sort of lung infection in the weeks following my hospital discharge. I noticed that I had become more & more short of breath in the days leading to my scan & that I didn’t have the lung capacity to walk far without feeling tired. A lung function test as well as the PET showed that my lungs were severely compromised so my transplant doctor immediately put me on antifungals, antivirals, antibiotics & prednisone (a steroid) so that all avenues of infiltration were covered. He suspected that I developed pneumonitis from the intense transplant chemotherapy drugs, but without an invasive biopsy, he couldn’t be certain. Regardless of the cause, within days of taking the new meds, I felt infinitely better. Breathing is fun…& important! I really didn’t realize how bad I felt until I started feeling better. 2 weeks later I went back to my oncologist for a follow-up lung function test & it showed that my lungs have cleared up & are functioning within normal limits. However, I’m remaining on all the medicine until further notice.
The other result of the PET scan, regarding the lymph nodes, was a bit unwelcome but not too concerning. It showed 2 very, very small areas of abnormal uptake – one in my right chest & one near my left kidney. However, these areas were so small that the radiologist deemed the results inconclusive for lymphoma; or for anything else for that matter. The nodes are located in 2 areas in which I’ve never had the disease before, so my oncologist didn’t seem overly concerned – he said they could light up due to any number of things, including due to the lung infection. With that said, I have yet another PET scan in mid-September to follow up on these nodes. My oncologist & I felt this to be the best option at this time & we’ll see how it develops, if at all, from there. In the meantime, I’m not going to sweat it & am going to enjoy my summer feeling positive, stronger & more energetic than I’ve felt in a long time! I haven’t gone back to work yet & I still have restrictions, as I’m not 100 days post-transplant, but all of those restrictions are very minor in the grand scheme of things.
My next, & hopefully last, appointment with my transplant doctor is August 2nd. If all is well, I’ll be back in my oncologist’s capable hands & the transplant will be a distant…but worthwhile…memory.
Thanks for checking back in & I’ll be sure to inform you of the results of the mid-September scan. All of your support & love has been truly beneficial to my recovery!! You are the greatest!
Love, MollyJun.26.2016 at 11:50 AMFREEDOM!!
I was discharged from the hospital on June 7th & would have kissed the ground outside of the hospital had I not been afraid of contracting a fungal infection that would have led me straight back to where I had just come. In total, I spent 21 days as an inpatient but to me it felt like 21 years. One thing is certain: I can never commit a crime because I know full-well that I could not do the time. I started chemo on the afternoon I was admitted & received it for the following 6 days. Melphalan, the ‘M’ in ‘BEAM’, was the absolute worst of them all. In order to prevent mouth sores, I had to suck on ice before, during & after its administration. On May 25th (now known as my 2nd birthday), I received the stem cells that I worked so hard to collect a few weeks prior. The transplant itself was pretty uneventful & it took less than an hour to administer the 3 bags. However, I did receive a ballon & a certificate from the nursing staff for my efforts – yay, me!
The next several days I watched as my white blood count & platelet count crept lower & lower. During this time, my physical health also plummeted drastically. This was the transition phase of when the chemo was still in my system & the stem cells were learning where to go & what to do. Basically, I had no immune system & despite my best efforts with keeping my mouth cold during melphalan, my esophagus had been badly damaged. For about 7 consecutive days, I could not swallow food or water – it even hurt to swallow my own saliva. I would vomit randomly throughout the day, which did nothing to ease the pain in my throat. I developed a fever, which warranted a chest x-ray to ensure that I didn’t have pneumonia. Honestly, it was hell. It was everything they had warned me about in the beginning. During this time, it was really hard for me to remain positive & to see the big picture. It was the longest 7 days of my life & it felt like it would never end. However, it did end & slowly but surely, my immune system started to improve & my throat began to heal. Everyday, my numbers were posted on the board so that I could see the improvement. My stem cells engrafted a bit earlier than expected, which was just fine with me. Once I started feeling better, my main focus was setting a hospital record in quickest turn-around time for a transplant patient. I’m unsure if 21 days is a record, but I do know the doctors were impressed & pleasantly surprised with my progress. Once I was handed my discharge paperwork, I power-walked (as briskly as my post-transplant lungs would allow) out the double doors & never looked back.
The majority of my recovery has been spent at my mom & stepdad’s house in Danville. I was told that I would need a caregiver around me to help with preparing meals, reminding me to take my meds, etc. I slept a lot the 1st week home, but would awaken a few times throughout the night around 3:30 AM & 7 AM, which ironically were the times in the hospital they would wake me up to take vitals. Luckily, I broke this pattern after a few days. Every day I feel better & every day I feel as if I’m regaining more of my strength. I haven’t been as weak or fatigued as I had originally anticipated. I’ve been to the doctor 3 times since discharge to have my blood drawn, & each time, my numbers continue to improve. I do have a handful of restrictions & I have to wear my mask every time I am outside my home, but this is a small price to pay for freedom. I will do everything in my power to prevent going back to the hospital.
Aside from the damage to my esophagus & the nausea, vomiting, & GI issues associated with the chemo, the worst part about being in the hospital is the smell. I can’t really describe it, but the smell of the hospital room – the sheets, the blankets – makes my stomach turn. 2 days after discharge, I had to report back to the hospital for blood work & was told I was a bit dehydrated & needed fluid. So, I went to the chemo infusion suite, was escorted to a room similar to the one I had just left, & immediately got sick in the toilet from the smell of the place. I am so thankful that I don’t work in the hospital setting because I’m sure I would have to find a new job.
Despite loathing the fact that I was in the hospital, I am beyond grateful for all the love, support, messages, cards, & visitors that I received over the course of the 21 days. Without all of that & without all of you, my time in there would have been completely unbearable. Thank you so much for keeping me sane & positive & for giving me the mental strength to persist & push through all the obstacles. I truly could not have done it without you & am forever thankful.
On July 5th, I have a PET scan to determine the immediate success of the transplant & to determine if all this BS was worth it. I am hopeful that I will have great news to report. I will definitely post an update once I know the results. In the meantime, keep your fingers crossed & the prayers coming! Love you all.May.18.2016 at 10:40 AMTHE BEGINNING OF THE END
I have received the dreaded phone call – my freedom has been stripped from me & I have to turn myself in. In just a few short hours, I will be walking into the University Hospital where I’ll remain captive for about 30 days. I’ll be at the mercy of doctors, nurses, blood pressure monitors, constant beeping & a chemo pole – not to mention a smell that turns my stomach & makes me want to run for the hills. This is the day I’ve literally been trying to avoid for the past 2.5 years. However, I’ve been in denial & I’ve been stubborn for too long & I know those characteristics have been detrimental to my health. It’s time to bite the bullet & face this head-on…run into the fire guns blazing. All the cliche terms you can think of apply to this moment in time…and I am beyond scared, beyond nervous, beyond anxious. I am absolutely dreading it. I never want to feel the way I’m feeling right now ever again in my life. While I’ve had time to process this & have known this day has been coming, the actual phone call was a harsh reality check.
Despite all the negative feelings I have, I do have to count my blessings & focus on the positives. I am a mere 30 days from beating this & hopefully will rid myself of this black cloud that’s been hovering over me for far too long. 30 days is nothing compared to the 5.5 years I’ve been dealing with this. The 1st week in the hospital will, hands down, be the worst week of my life – I’ll be inundated with 4 different chemo drugs until my immune system is completely wiped out. I’ll feel sick, nauseous, weak, close to death. The bacteria in my gut will be my worst enemy. But then I’ll get my stem cells back & those suckers will go to town to rebuild me from the ground up. They’ll give me a fresh, new, (hopefully) cancer-free immune system & after a few months, I’ll be Molly 2.0…stronger, healthier, sexier. I’ll have a new lease on life & an excuse to celebrate 2 birthdays every year – in my opinion, the more reasons to celebrate (i.e. receive gifts), the better. It has been a long road full of obstacles & potholes, but it’s a very exciting feeling knowing this could all be coming to an end very soon.
During my hospital stay, I will be allowed to have visitors, but I think they only permit 3 at a time. So if you’re interested in gracing me with your presence, call, text or message me & we will definitely figure out the best time & day for that to happen. I would love to hear from all of you regardless, so please message me if you have the chance…it’ll help the time go much more smoothly & quickly…& it’ll do wonders for my mood. Don’t think that you’ll be bugging me or interrupting anything because that will be the furthest thing from the truth.
I’ll do my best to keep you updated during this 30-day roller coaster ride. Thank you all so much for helping me along this journey & for never letting me feel like I’m in this alone. Words truly cannot express my extreme gratitude.
Much Love, MollyMay.13.2016 at 10:38 AMCOLLECTION COMPLETE
Last week I went to Iowa City to start the stem cell transplant process. On Tuesday morning, I had a central line put into my left jugular vein. I was a little worried about this procedure, but it went very smoothly and quickly. It was a bit sore the whole time it was in & my range of motion was slightly limited, but all-in-all, not a big deal. After I was finished in the OR, I reported to the donor center where they took a vial of blood to determine if my white count was high enough to bypass the booster shot scheduled for later that night. Of course, my counts were low so I had to report back to the hospital at 8 PM to get yet another shot in my arm. This drug was called Mozobil & it’s job was to help my bone marrow release stem cells into my bloodstream so that they could be more easily collected the following day.
On Wednesday at 8 AM, I reported back to the blood donation center, where they hooked up my central line to the pheresis machine & began collecting my blood. The machine separated & collected my stem cells over the course of 5 hours. The goal was to collect at least 5 million stem cells on this day. If not, I would have to come back the next day to collect more until the goal had been achieved. A few hours after I left the hospital, the transplant nurse called to tell me that I had collected 17 million stem cells! I thought for sure I would be collecting over a course of 2-3 days, because that’s just my luck, so I was elated to hear this news. For me, the less time in the hospital, the better. The Mozobil shot proved to be highly successful & worth every uncomfortable side effect.
After the central line was pulled (13 cm in length, yikes!), I was free to go home. So for the past week, I have just been working & awaiting a phone call informing me when a bed will be available on the transplant floor. As of this moment in time, I still have not received that call. I am OK with having a week or 2 to work & get my affairs in order before spending 4 consecutive weeks in the hospital. I’ve spent my evenings after work pampering myself in the form of massages & facials & tanning. I’m trying to be outside as much as possible because I won’t be able to set foot outdoors for 30 days. That will probably be the hardest part of this whole ordeal, especially because summer is approaching. However, I realize that in the grand scheme of things, this is only a small fraction of time & the end is in sight.
Keep those uplifting messages & prayers coming my way! They do wonders for my mood & attitude! I’ll let you know when I get the impending, inevitable phone call.
Love, MollyMay.01.2016 at 1:44 PMPRAYERS ANSWERED, CRISIS AVERTED
I found out some really great news on Tuesday afternoon….my insurance was reinstated! This came as such a relief & I didn’t know whether to break down & cry or jump up & down in happiness. It had been such a stressful situation but the outcome couldn’t have been better & I owe many people a big ‘thank you’ for helping me through this ordeal. Luckily, this mishap did not cause a delay in my treatment plans & the schedule remains on track.
I went to Iowa City on Thursday (April 28th) to meet with the transplant nurse & the transplant physician assistant to sign paperwork & to discuss the upcoming schedule. I also went to the blood donation center to have them look at my veins to determine if they are adequate to use for stem cell collection…sigh, they are not. Yesterday, today & tomorrow I receive 2 shots each day of a white blood cell-boosting drug called Neupogen. Fortunately, I am able to have these shots in Des Moines. Since the drug stimulates the bone marrow to rapidly produce white blood cells, a side effect is bone pain, which I have thus far been able to keep at bay with Advil. Monday morning before work I will go in for the final 2 shots. Tuesday morning I go back to Iowa City so that we can start the stem cell collection process. At 9AM, I will have a central line inserted into my jugular vein (yikes!) because my arm veins are small & not suitable to use for this high-rate collection process. Afterwards, I will report to the blood center, where I will give up all my freshly-made stem cells. This process will take about 5 hours & the goal is to donate 5 million stem cells. If this goal is not achieved, I’ll repeat it the following day. 2 million stem cells is the bare minimum amount in order to proceed with the transplant.
Once the adequate number of cells have been harvested, which can take 2-4 days, the line will be taken out of my jugular & I will be free to go home until a bed on the transplant unit becomes available. There are only 15 beds in this unit, so I was told availability may take 1-2 weeks. Once I get the phone call, I’ll be admitted & the 4-week-long hospital stay will begin.
Thank you for all of your supportive, uplifting messages during this stressful time. The chaos about my insurance really upset me & put me in a bit of a panic, but thankfully, it all worked out. I appreciate all the prayers & well-wishes more than you’ll ever know.
I’ll post again after the collection phase is complete & let you know how that goes. I’ll be one step closer to having this whole ordeal behind me.
Much love, MollyApr.24.2016 at 9:18 PMA DELAY OF PLANS
I know it’s been over a month since I last posted & I apologize for that. I had cycle 3 of ICE on March 30th – April 1st. During that stay, I also had a lung function test & an echocardiogram to ensure that my heart & lungs are healthy enough to undergo a stem cell transplant. For the most part, Cycle 3 was uneventful & the side effects didn’t seem as lengthy or as miserable as they did following Cycles 1 & 2. I bounced back pretty quickly & was able to enjoy my birthday on April 7th with family members that had come to visit for a few days.
On April 20th, I went back to Iowa City to discuss with my oncologist & the transplant team the ins & outs of what a stem cell transplant will entail….shocking news: it does NOT sound fun. In order to collect cells for the transplant, I will need a series of 4 shots over a course of 4 days. The purpose of these shots is to signal the bone marrow to produce more stem cells & to push the cells out into my bloodstream. I will then go to the hospital where they will put an IV into each arm. From one IV they will collect my blood, which will be rich in stem cells. The blood will go through a process called apheresis, in which a machine will separate & collect the stem cells. The remaining blood will be returned through the IV in my other arm. The stem cells will be stored & frozen until I’m ready to get them back. This whole process will take about 5 hours & the goal is to collect about 5 million stem cells. If I don’t reach that goal, I’ll have to go back the following day so they can collect more. I have to give up no less than 2 million stem cells in order to have a transplant.
Once stem cell collection is complete, it will probably be another 1-2 weeks before they have a bed ready for me in the transplant unit. Once a bed is available, I will be in the hospital for 4 consecutive weeks. During the 1st week I will be getting a chemo cocktail called BEAM. From what the nurse said, BEAM is much, much more intense than ICE & it is not well tolerated – people become very nauseous & sick while receiving BEAM. The purpose of BEAM is to obliterate the immune system & bring it down to baseline. It essentially serves to reboot the immune system so that it can start fresh. During this time, I will be very prone to infections so will be given IV antibiotics as well as anti-nausea meds. Once BEAM is completed, they’ll reheat my stem cells & give them back to me via my port. The stem cells will do their job to rebuild my immune system & I will stay in the hospital until my blood counts rebound & they feel I have enough energy to care for myself. I will have weekly check-ups for the 1st month or so but complete recovery of immune function will take much longer – I was told to prepare to take off work for 3-6 months. UGH. During recovery, they told me to expect to feel very weak & fatigued; I will be able to care for myself, but not much else, so I will need a caregiver around me during this time. With that being said, I plan on living back at home with my parents for a few months until I regain my energy.
I will be able to have visitors while I’m in the hospital as long as they are healthy & not showing symptoms of a cold or flu (young children won’t be allowed, though…sorry). So PLEASE come visit me if you’re so inclined because I know I’ll be going out of my damn mind. I can barely handle 3 days in the hospital…4 weeks is going to be absolute torture. I am going to feel like a caged animal because I won’t even be allowed to leave the transplant unit, let alone go outside, for 4 weeks.
The transplant was scheduled to start on May 2nd, but last week I had some very crushing news – hence the title of this post. I received notification that my insurance has been denied & my coverage ends on the last day of April. I was absolutely devastated after learning this & have been in a panic ever since trying to figure out what to do next. Luckily, my employer has been super supportive & a social worker at Medicaid has been a God-send in helping me figure this all out. I should know more by the end of this week, but am hoping this was an error & that I’ll be insured again soon. Depending upon what I learn, I may have another round of ICE this Wednesday. For the transplant, I have to wait at least 1 month after my last chemo, but no longer than 3 months. I am really hoping I won’t need a 4th round of ICE, but at this point, I don’t know for certain. This whole insurance debacle has been infinitely stressful & frustrating & has thrown a wrench in my treatment schedule. I hope to have good news to share later on this week but in the meantime, keep me in your prayers because I sure could use a small miracle right about now!
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